Tomorrow is my five year wedding anniversary so it seemed fitting today to blog about someone very close to me heart.
My darling husband.
Tony and I 'officially' got married on the 24th October 2008 in front of our two witnesses, my parents, my sister, family friends from Canada and my best friend from school. It was a tiny affair but it was wonderful. After the ceremony we went to our favourite pub/restaurant and then went on to spend the night in Chiseldon house hotel. The reason it was such a small do was because the next day on the 25th we had a church blessing and for me as a Christian that was the important part. It was during the blessing that we exchanged rings and vows and had about 80 guests. We had the service at 5pm and had candles lit everywhere we could safely put them! It was a truly beautiful occasion.
After the service we had tea and cupcakes in the church with all our guests and once all the photographs were taken we went back to my parents house with 25 friends and family and had a fabulous celebration catered by a local restaurant.
Our wedding 'flowers' were gathered from the country village that I grew up in and arranged by a good family friend. They were breath taking! She had used these amazing Autumn colours, almost everything wild from the hedges and just brought a few flowers from the market to put some actual flowers in the display. My bridesmaids had bouquets made out of felt flowers which were fabulously quirky! The photography was done by another family friend and my Dad being a C of E vicar did the service.
Tony and I have never been a 'flashly' couple (not that kind of flashing!) and our wedding reflected us wonderfully. It was small, intimate and full of love and laughter. I was 7 months pregnant at the time and wore a deep purple maternity dress and I love knowing that even though she was still inside Amelia-Rose was technically at our wedding!
We pledged to each other that day 'In sickness and in health' 'For better and for worse' we would stay together and there isn't a doubt in my mind that we have kept those vows.
In the quest for honesty (as is the purpose of this blog) I will not lie and tell you it has all been plain sailing. In fact, there was a time that our marriage was pushed to the very limit. It was after we had relocated to Dorset but Tony was commuting to Wiltshire to work (2 and a half hours away) and working 24 hour shifts. He was away more then he was around and rather then go through the pain of missing each other when he was gone we fell into a pattern of bickering and the light heartedness that had always been key in our relationship slipped away. I felt like I had lost the man I married to depression.
There was a time that I wondered if we would make it. But thank God, we fought. We talked, we cried together and most importantly we healed together. That's the thing you see with unconditional love. If you love someone unconditionally that goes beyond the boundaries of behaviour and hurt.
Unconditional love is not 'I love you if you behave in a way I like' it is 'I love you despite everything else, no matter what.' What this time in our relationship taught me is that you can love someone enough to lay your life down but you don't always have to like them very much!
When Tony started to work in Dorset and we were seeing each other every day again we both let ourselves heal. We let our marriage heal. Unconditional love.
We grew as a couple and as parents and the whole time we were growing together. He became a bigger part of me and I became a bigger part of him.
Now 5 years on and not a day goes by that I don't look at Tony and thank God for bringing him into my life. Tony is selfless and kind in a way that goes above and beyond the call of duty. He is tender and loving. He never belittles how I feel and I have never EVER heard him complain about my illness. Obviously it goes without saying that he wishes I was well but he never complains about the impact my reduced capability has brought to our lives. In fact, several times a week he will tell me how well he thinks I am coping and says he doesn't know anyone else who would be able to face chronic illness with such strength and remain positive. He's like my own personal champion
When I got sick without ever needing to be asked Tony took over all the house work, in fact, he actually tells me off if I do it! I enjoy housework so do as much as I can but there are things like hovering and carrying loads of washing that I simply cannot do and like a domestic knight in shining armour he swept in and took over.
He kisses me on the forehead and tells me he loves me, he holds me so tight when I cry, when he envelopes me in his arms my troubles melt into him and he carries them with no sign of it being a burden.
I don't have to voice how I feel or how bad the pain is around him, he always just knows. If I do need to talk about it though he listens.
In the lonely long nights that I am awake in agony (and I mean agony) he is there, stroking my hair, holding my hand. Telling me I look beautiful even if I don't feel it.
I need to take pain killers first thing in the morning and to enable me to do this before I have to get out of bed I get breakfast in bed everyday and if he is on an early he makes me a cup of tea in my travel mug and puts a bowl, milk and cereal on a tray so it is at the side of the bed when I wake up.
The thoughtfulness of my lovely hubby is endless.
No one can make me laugh like Tony does, he is silly and so inappropriate sometimes but it is always done in good humour. He's never grown out of the naughty school boy humour!
He is the most dedicated father to our daughter also. I am still really struggling with the pain from the hip blocks so this morning to keep Amelia-Rose busy and give me some quiet he spent an hour in her bedroom with her on the floor playing Barbies!
As if doing everything he does at home wasn't enough 'giving' Tony is a carer for adults with learning difficulties. His ability to do the job he does to the standard he does it is outstanding. For whatever reason, care work is a female dominated profession but hands down, Tony is as good if not better then some of the best female carers I've ever met. He takes the needs of his clients as paramount and gives a huge part of himself to his work. He really is a carer, he cares. For him, it's about so much more then just turning up to work, doing your shift and coming home. He invests a part of himself into every shift and I couldn't be prouder of him for the work that he does.
I can't imagine what life would be without my love. My soul mate. My 'other half'. We have laid the strongest foundations in the past 5 years and I look forward now to building our future together.
So, what is love? Well if you ask me. It's Tony.
Wednesday 23 October 2013
Tuesday 22 October 2013
Getting through
Yesterday I went and had hip blocks put in to both of my hips. It is a procedure where the doctor puts an injection into your joint and injects a local anaesthetic and steroid. It's not a nice procedure to have done although yesterdays was less intrusive then when I had the dye put in for my MRI last year because that went into the groin and this Dr went in from my outer thigh, really where you think of when you think of your hip. You're normally given a sedative or a general but for me to get the blocks done before I have to go back to London the only appointment they could give me was yesterday and there was no one around who could sedate me.
The first one went in fairly straightforward. It hurt but was endurable. My body seems to react to the intensity of the pain by making me laugh, not just a little chuckle, full on hysterical laughter. I've come to believe that when our body is going through something exceptional we react in one of three ways. You can go into shock. Cry and get very upset and panic or you reach this weird laugh hysteria. I went into crazy loon laugh mode.
The injection in the left side was nowhere near as easy. The needle wouldn't pass into the joint and it took longer. The team were wonderful, the doctor was great but it really hurt. The pain went up into my back and down my leg and when I thought surely he must be done the Dr apologised for not having it in place yet! I was sure he must have almost been finished but he hadn't been able to get the needle in the right place yet!
The nurse told me a few times how brave I was which sounded strange to me although I appreciated that she acknowledged (and the Dr too) that what was happening was really not an easy thing to go through and I coping well! The thing is, I didn't feel brave! As I laughed and ooo'ed and aaa aah aah my way through the procedure I didn't exactly feel like a super hero!
However, on the way home I realised what I did feel was proud of myself. I didn't cry or get overwhelmed. I went in and I endured it and managed to banter with the wonderful medical team. It's yet another nasty big hospital appointment that I've got through alone. These are the appointments that Tony can take me to but can't come in with me. I have to do it alone.
The Dr wanted me to be wheeled through into recovery on my 'trolley' and was happy to know I had a wheelchair. Having both done at once (well in one appointment) made me feel very unstable and wobbly and when we got home I fell up the stairs a bit, nothing dramatic, more of a stumble but I don't think there was anyway I was making it up the stairs alone. Enter my prince charming who put me over his shoulder and gave me a fire mans lift up the stairs. The hysterical pain induced laughing came back but I didn't have to climb the stairs!
Over night was really hard, the pain wasn't only in my hips but down my legs, into my back, randomly my feet hurt, my tummy felt like I had pulled a muscle and my wrists hurt?? What is that about?! I guess it's the hypermobility syndrome, the feet and wrists possibly from where I was clenching so much during the injections? My pelvis and feet felt SO heavy. I managed two hours sleep in two one hour blocks and haven't managed to catch up on any today which is a bit of a bummer. I am so rubbish at sleeping during the day though.
I'm back at the pain clinic Thursday but the next two big appointment to come are both in London one of the 8th November and the other on the 15th.
To try to keep my mind off the pain last night I went on a bit of an online shopping spree! Whoops! Anyway I feel far more organised for Christmas (I know, I know, it's October but I'm making loads of presents this year!) and I also brought all the decorations for Amelia-Rose's birthday (which is, erm... January!) oh and did a food shop.
Hopefully these blocks will bring a bit of calm, I am SO ready for manageable pain.
The first one went in fairly straightforward. It hurt but was endurable. My body seems to react to the intensity of the pain by making me laugh, not just a little chuckle, full on hysterical laughter. I've come to believe that when our body is going through something exceptional we react in one of three ways. You can go into shock. Cry and get very upset and panic or you reach this weird laugh hysteria. I went into crazy loon laugh mode.
The injection in the left side was nowhere near as easy. The needle wouldn't pass into the joint and it took longer. The team were wonderful, the doctor was great but it really hurt. The pain went up into my back and down my leg and when I thought surely he must be done the Dr apologised for not having it in place yet! I was sure he must have almost been finished but he hadn't been able to get the needle in the right place yet!
The nurse told me a few times how brave I was which sounded strange to me although I appreciated that she acknowledged (and the Dr too) that what was happening was really not an easy thing to go through and I coping well! The thing is, I didn't feel brave! As I laughed and ooo'ed and aaa aah aah my way through the procedure I didn't exactly feel like a super hero!
However, on the way home I realised what I did feel was proud of myself. I didn't cry or get overwhelmed. I went in and I endured it and managed to banter with the wonderful medical team. It's yet another nasty big hospital appointment that I've got through alone. These are the appointments that Tony can take me to but can't come in with me. I have to do it alone.
The Dr wanted me to be wheeled through into recovery on my 'trolley' and was happy to know I had a wheelchair. Having both done at once (well in one appointment) made me feel very unstable and wobbly and when we got home I fell up the stairs a bit, nothing dramatic, more of a stumble but I don't think there was anyway I was making it up the stairs alone. Enter my prince charming who put me over his shoulder and gave me a fire mans lift up the stairs. The hysterical pain induced laughing came back but I didn't have to climb the stairs!
Over night was really hard, the pain wasn't only in my hips but down my legs, into my back, randomly my feet hurt, my tummy felt like I had pulled a muscle and my wrists hurt?? What is that about?! I guess it's the hypermobility syndrome, the feet and wrists possibly from where I was clenching so much during the injections? My pelvis and feet felt SO heavy. I managed two hours sleep in two one hour blocks and haven't managed to catch up on any today which is a bit of a bummer. I am so rubbish at sleeping during the day though.
I'm back at the pain clinic Thursday but the next two big appointment to come are both in London one of the 8th November and the other on the 15th.
To try to keep my mind off the pain last night I went on a bit of an online shopping spree! Whoops! Anyway I feel far more organised for Christmas (I know, I know, it's October but I'm making loads of presents this year!) and I also brought all the decorations for Amelia-Rose's birthday (which is, erm... January!) oh and did a food shop.
Hopefully these blocks will bring a bit of calm, I am SO ready for manageable pain.
Saturday 19 October 2013
"The sun is shining the tank is clean"
Today has been a really super day. For no reason really but my spirit has just been 'on one' all day. Poor Amelia-Rose has been so poorly this week and any mother can tell you caring for a poorly child is often both exhausting and heart breaking and whilst yesterday I felt like I had been hit by a train I've felt really good today.
I've managed to do that thing again where I can separate the day I have from the pain I've experienced. Win!
Amelia-Rose was a little ball of energy this morning which was lovely to see, we hung out together playing Barbies (her choice!) and I emptied out a cardboard box of its bubble wrap and we spent a good 45 minutes stomping on it. It was such good fun! Granted her stomping was a little more enthusiastic then mine but it was so wonderful just to be goofy for a while.
My mum has started coming round once a week to do some housework for me (as I can't hoover etc) which is much appreciated and afterwards today we went out for lunch at the Red Brick Café. Man, I don't know what it is about that place but it is magical. It oozes creative energy, everyone there is just having a great time and enjoying the great food and atmosphere. It's a really special place. I was thinking when Amelia-Rose starts school full time I would love to take my notebook and pen and go alone to do some writing.
It left me feeling inspired and I buzzed for the rest of the afternoon. I have times when I am going around our town that I feel like I could just burst sunshine! I never thought where I live could make me so happy but it really does. It's the most amazing place.
I've managed to do that thing again where I can separate the day I have from the pain I've experienced. Win!
Amelia-Rose was a little ball of energy this morning which was lovely to see, we hung out together playing Barbies (her choice!) and I emptied out a cardboard box of its bubble wrap and we spent a good 45 minutes stomping on it. It was such good fun! Granted her stomping was a little more enthusiastic then mine but it was so wonderful just to be goofy for a while.
My mum has started coming round once a week to do some housework for me (as I can't hoover etc) which is much appreciated and afterwards today we went out for lunch at the Red Brick Café. Man, I don't know what it is about that place but it is magical. It oozes creative energy, everyone there is just having a great time and enjoying the great food and atmosphere. It's a really special place. I was thinking when Amelia-Rose starts school full time I would love to take my notebook and pen and go alone to do some writing.
It left me feeling inspired and I buzzed for the rest of the afternoon. I have times when I am going around our town that I feel like I could just burst sunshine! I never thought where I live could make me so happy but it really does. It's the most amazing place.
Wednesday 16 October 2013
6 days absent
It's been almost a week since I wrote and I really have missed it. I've just not really been in the 'right place' to write so I decided to leave it.
The 12th October was the year anniversary of my operation in Reading and having to think about that time and the consequences of that surgery have been difficult.
My experience at Reading hospital left me traumatised which resulted in my body actually going into shock (not a pleasant experience) and the operation itself has left my hip so unstable I 'pop', 'click' or 'semi dislocate' for the proper term up sometimes up to 11 times a day, even on a good day it will go 8 or 9 times.
I've actually just started seeing a psychologist to help me process what happened in Reading and what has happened since. The lady I see at the pain clinic thought it would help, I think she identified that the experience is something I really really don't like talking about and probably for that reason needs to be talked about! We are also all hoping it will help me heal the gap between mind and body. That seems like such a ridiculous thing to write but I really don't relate to my body at all. Until it started hurting me everyday I never really thought about my body but now, I just, I don't trust it! It hurts, it dislocates, it doesn't do what I want/need it to do. It's not a body image thing like 'urrgh I'm so fat, I've got a big nose' it's a 'you Mrs body screw me over all the time and I don't like you anymore so there!' thing.
I also haven't been writing on here because I've been working on some other writing projects and I have energy for one or the other! I am loving doing them though,
I got some good news today! I am going to get the hip blocks I need! Finally! On Monday!! I have to travel over an hour which is a down side but I was getting really concerned that I was going to have to go back to my consultant in London and tell him that nobody in Dorset could/would do the hip blocks he ordered. He wanted to know the impact it would have on life and with only three weeks between the injections and my next appointment with him it isn't really going to give us an accurate idea but at least it will be done.
The rather daunting downside though is that the Dr that will do it can't sedate me or give me a general anaesthetic (which is the norm) because there isn't an Anaesthesiologist available.
Unfortunately I am going to have to cut this short because Amelia-Rose isn't very well and needs her Mumma!
The 12th October was the year anniversary of my operation in Reading and having to think about that time and the consequences of that surgery have been difficult.
My experience at Reading hospital left me traumatised which resulted in my body actually going into shock (not a pleasant experience) and the operation itself has left my hip so unstable I 'pop', 'click' or 'semi dislocate' for the proper term up sometimes up to 11 times a day, even on a good day it will go 8 or 9 times.
I've actually just started seeing a psychologist to help me process what happened in Reading and what has happened since. The lady I see at the pain clinic thought it would help, I think she identified that the experience is something I really really don't like talking about and probably for that reason needs to be talked about! We are also all hoping it will help me heal the gap between mind and body. That seems like such a ridiculous thing to write but I really don't relate to my body at all. Until it started hurting me everyday I never really thought about my body but now, I just, I don't trust it! It hurts, it dislocates, it doesn't do what I want/need it to do. It's not a body image thing like 'urrgh I'm so fat, I've got a big nose' it's a 'you Mrs body screw me over all the time and I don't like you anymore so there!' thing.
I also haven't been writing on here because I've been working on some other writing projects and I have energy for one or the other! I am loving doing them though,
I got some good news today! I am going to get the hip blocks I need! Finally! On Monday!! I have to travel over an hour which is a down side but I was getting really concerned that I was going to have to go back to my consultant in London and tell him that nobody in Dorset could/would do the hip blocks he ordered. He wanted to know the impact it would have on life and with only three weeks between the injections and my next appointment with him it isn't really going to give us an accurate idea but at least it will be done.
The rather daunting downside though is that the Dr that will do it can't sedate me or give me a general anaesthetic (which is the norm) because there isn't an Anaesthesiologist available.
Unfortunately I am going to have to cut this short because Amelia-Rose isn't very well and needs her Mumma!
Thursday 10 October 2013
Autumn days
Today has been cold but mostly wonderful. My thumb is really sore at the minute and I'm finding it difficult to do every day things that should just be easy. Chopping veg for stew earlier was horrible! I make a lot of stews for Tony and Amelia-Rose because I can do it in the morning before I'm too tired and I know it will just bubble away in the slow cooker and they'll have a lovely dinner. There's something very therapeutic about a good stew I think!
I use my left thumb to hold in the lever on my mobility scooter which is unavoidable but boy am I paying for it at the minute!
Tony is on a late shift tonight so started at 3pm and will be home about 10.15pm. It meant I picked Amelia-Rose up from school and we got to spend the evening just the two of us which was nice. Obviously it goes without saying it's lovely when Tony is around but Amelia-Rose and I got to spend some real quality time together today and it was absolutely wonderful.
Autumn is my favourite time of year, those wonderful blue sky days with a nip in the air and crunchy leaves under foot. I think there is something magical about Autumn.
On the way home from school Amelia-Rose and I collected lots of 'Autumn things' and used them to make an Autumn picture using sticky back plastic when we got home. Every pile of leaves we found we crunched in. Amelia-Rose with her feet and me on my mobility scooter! Lord knows what people must have thought seeing a fully grown woman going round and round in circles through leaf piles but it made Amelia-Rose and I happy and that's all that matters!
I took her a kinder egg for a treat after school and she got a little blue horse in it, when she first got home I had to go in the house whilst she hid it in the garden, she then drew me a treasure map and I had to go out into the garden and find her. I should point out Amelia-Rose is already better at giving directions then I have ever been! I was most impressed! After that we made the picture and Amelia and pretending the picture was pony land and I was the first human to ever be allowed into pony land. I quietly put the camera on the table and got some very sweet 'pony view' pictures and also made a little film. You can't see either Amelia-Rose or I in it, just hear us talking but I feel like I captured a really special time.
Autumn is my favourite time of year, those wonderful blue sky days with a nip in the air and crunchy leaves under foot. I think there is something magical about Autumn.
On the way home from school Amelia-Rose and I collected lots of 'Autumn things' and used them to make an Autumn picture using sticky back plastic when we got home. Every pile of leaves we found we crunched in. Amelia-Rose with her feet and me on my mobility scooter! Lord knows what people must have thought seeing a fully grown woman going round and round in circles through leaf piles but it made Amelia-Rose and I happy and that's all that matters!
I took her a kinder egg for a treat after school and she got a little blue horse in it, when she first got home I had to go in the house whilst she hid it in the garden, she then drew me a treasure map and I had to go out into the garden and find her. I should point out Amelia-Rose is already better at giving directions then I have ever been! I was most impressed! After that we made the picture and Amelia and pretending the picture was pony land and I was the first human to ever be allowed into pony land. I quietly put the camera on the table and got some very sweet 'pony view' pictures and also made a little film. You can't see either Amelia-Rose or I in it, just hear us talking but I feel like I captured a really special time.
We had a nice meal together. I had a carrot, apple and ginger smoothie because I'm still struggling with my jaw and didn't fancy a crunchy salad but I am really enjoying and sticking to the raw food. It's amazing what it is doing for my energy levels.
I hope days like today are the days Amelia-Rose remembers when she is older. It really reminded me of how things use to be before I became disabled and I hope she holds onto these memories. Being as creative as I am I have always loved the creativity being a mum brings back into your life. We would always have some craft project or another on the go and be off on long nature walks looking for fairies or dragons.
When Amelia-Rose was born she reopened my eyes to the beauty and magic of the world and I loved living life at her pace. Everything was new and exciting and demanded being explored. If we were walking past a row of houses we would make up detailed stories of who might live inside and pretend we knew all about them. I am ashamed to say when pain became such a big part of my life I lost some of that. It was so hard to just function anything beyond that suddenly became out of my reach.
I feel like at the minute we are getting that back and that excites me so much. There is something very cruel about not being able to be the mum you know you can be.
I love the way that Autumn eases us into Winter. It is a slow transition that gently prepares us all for the darker days ahead. It has made me think about how my life is transitioning from thinking I was going to get better to accepting that this is something I have to manage my whole life.
Wednesday 9 October 2013
'The James'
Today my body has gone "Aggghhh pain pain pain, hurt, hurt, hurty hurt hurt, rrrrrrrrrrrraaaaaaaaaaaaa"
Today my mind has gone "Sod you body, I feel good!"
It's the second day in a row that my pain hasn't dragged me down and yeah, I'll say it, I'm proud of that. I am proud of myself. We're not ever really meant to talk about being proud of ourselves are we? It's 'blowing your own trumpet' or being 'big headed' but why shouldn't we talk about the times that we've done something and thought 'Yeah, good for me!'
So today I met James, 'the James'. For months I've heard everything James has to say about the album and my vocal performances but I've never actually met him. Just as I began to think that maybe James was actually the name for Steve's imaginary friend that lives in the studio there he was in the flesh! Who knew it?! He's real!
You see, James is helping Steve with all the editing and production side of the album. I go in with Steve and we'll write a song, record it and spend some time putting it all together and then James goes in with Steve and listens to it with a new pair of ears and they make it the best it can be. Up until now we've just never been in the same place at the same time. It was great to finally meet.
The three of us got on like a house on fire and I honestly had one of the best afternoons that I've had for a long time. We did what I would call a typical 'Steve and Chloe' and had some really massively deep and personal conversations but there was no sense of 'Oh this is a bit weird, talking about all this with someone I met half an hour ago!' Perhaps now it won't be a 'Steve and Chloe' it will be a 'Steve, James and Chloe'.
A few songs on the album are written as a direct result of the drastic change my life has been through, the reasons behind them are really personal but I didn't feel at all uncomfortable being so honest with James in the room. It was clear he really got where they were coming from and that was nice.
It was good to talk about everything too, I say everything, I mean, the music, the process, the reason for the songs, how we all feel about it as a whole album rather then just individual songs. I think it must be impossible to talk about 'everything' that ever was EVER but you know what I mean.
It's funny how the three of us from very different backgrounds all ended up sat in a recording studio together on the 9th October 2013. I find it fascinating that there we all were, each of us putting a bit of ourselves into this album and seeing how our lives will forever be sort of entwined in this record.
We managed to get the vocals done (take that jaw infection!) for the final track which is insanely exciting. I almost can't comprehend that that's it, it's almost done! Although in many ways it is just the beginning, the journey of actually creating this album is almost through!
Today my mind has gone "Sod you body, I feel good!"
It's the second day in a row that my pain hasn't dragged me down and yeah, I'll say it, I'm proud of that. I am proud of myself. We're not ever really meant to talk about being proud of ourselves are we? It's 'blowing your own trumpet' or being 'big headed' but why shouldn't we talk about the times that we've done something and thought 'Yeah, good for me!'
So today I met James, 'the James'. For months I've heard everything James has to say about the album and my vocal performances but I've never actually met him. Just as I began to think that maybe James was actually the name for Steve's imaginary friend that lives in the studio there he was in the flesh! Who knew it?! He's real!
You see, James is helping Steve with all the editing and production side of the album. I go in with Steve and we'll write a song, record it and spend some time putting it all together and then James goes in with Steve and listens to it with a new pair of ears and they make it the best it can be. Up until now we've just never been in the same place at the same time. It was great to finally meet.
The three of us got on like a house on fire and I honestly had one of the best afternoons that I've had for a long time. We did what I would call a typical 'Steve and Chloe' and had some really massively deep and personal conversations but there was no sense of 'Oh this is a bit weird, talking about all this with someone I met half an hour ago!' Perhaps now it won't be a 'Steve and Chloe' it will be a 'Steve, James and Chloe'.
A few songs on the album are written as a direct result of the drastic change my life has been through, the reasons behind them are really personal but I didn't feel at all uncomfortable being so honest with James in the room. It was clear he really got where they were coming from and that was nice.
It was good to talk about everything too, I say everything, I mean, the music, the process, the reason for the songs, how we all feel about it as a whole album rather then just individual songs. I think it must be impossible to talk about 'everything' that ever was EVER but you know what I mean.
It's funny how the three of us from very different backgrounds all ended up sat in a recording studio together on the 9th October 2013. I find it fascinating that there we all were, each of us putting a bit of ourselves into this album and seeing how our lives will forever be sort of entwined in this record.
We managed to get the vocals done (take that jaw infection!) for the final track which is insanely exciting. I almost can't comprehend that that's it, it's almost done! Although in many ways it is just the beginning, the journey of actually creating this album is almost through!
Tuesday 8 October 2013
What a blooming day!
Ok, so I'm not really sure what to write about tonight. We'll see where this takes us shall we?
The day started off a bit manic, I rung the dentist at 8.30am (in my undies if I'm honest!) and the only time they could see me was at 9am! Cue calm but fast (Amelia-Rose does not respond to rush!) frenzy to get dressed, do my hair and get Amelia-Rose dressed and be out the door and on the other side of town in 30 minutes. We were victorious though and I got there on time! Hoora!
I have been put on antibiotics for 5 days but then I am on my own! Eeeeek! You see the dentist can see from the outside that clearly there is some kind of infection in my jaw/tooth but it isn't coming up on the x-ray and until she knows exactly where it is there is nothing she can do. So, I have 5 days to 'treat the symptoms' but we actually need it to develop so we can treat the cause! I have to go back in three weeks.
When I got back I made some biscuits and started a new food blog www.theverybendybaker.blogspot.co.uk I thought it would be fun to have somewhere to post all my recipes and it keeps them off this page then.
I got to plant most of my tulip and daff bulbs today with mum which was nice. I am excited to see them all come through in spring. I've gone a bit crazy with the tulip bulbs but it will be worth it. Our garden is going to be blooming wonderful!
Blooming. I wonder if I am going through a blooming stage in my life at the moment? I feel most probably I am at that point where the bulb has sprouted and the stem grown but the beautiful blooming flower is still safely tucked away inside the petals.
I don't know though, maybe in 5 years time I will look back on this time and think 'Yup, you were blooming then'. I know now when I reflect on the years gone by I was blooming at times when I didn't necessarily think I was.
I wonder sometimes how differently life would have turned out if I had made different decisions and taken different paths but I am so grateful that I took the ones I did. Would it have been nice to travel around Canada or go and work in America? Sure it would have but if this period of illness was an unchangeable aspect of my life would a travelling buddy have cared for me in the way Tony has? No. Would photo's of sunsets make me smile inside and out in the way Amelia-Rose does? Definitely not.
I believe every word I have spoken, every turn I have made, every decision I have mulled over, every leap of faith I have thrown myself into to, every step I have taken has led me exactly where I am right now and this is where I am meant to be to give me the strength I need to succeed in spite of my health.
When I was ten my mum and I went to stay with our friends in Halifax, Nova Scotia in Canada. One day we went to a farmers market and there was a chap there busking. He was absolutely fantastic and my mum and I decided to buy his album together. To this day it is one of my favourite albums and tragically you can't get it anymore although Raghu Lokanathan is still going strong (www.raghumusic.com)One There is a line in one of the songs that has followed me around for the past 15 years and regularly pops into my head when I meet new people.
"If you ask me where I'm from I'll say everywhere I've ever been"
The day started off a bit manic, I rung the dentist at 8.30am (in my undies if I'm honest!) and the only time they could see me was at 9am! Cue calm but fast (Amelia-Rose does not respond to rush!) frenzy to get dressed, do my hair and get Amelia-Rose dressed and be out the door and on the other side of town in 30 minutes. We were victorious though and I got there on time! Hoora!
I have been put on antibiotics for 5 days but then I am on my own! Eeeeek! You see the dentist can see from the outside that clearly there is some kind of infection in my jaw/tooth but it isn't coming up on the x-ray and until she knows exactly where it is there is nothing she can do. So, I have 5 days to 'treat the symptoms' but we actually need it to develop so we can treat the cause! I have to go back in three weeks.
When I got back I made some biscuits and started a new food blog www.theverybendybaker.blogspot.co.uk I thought it would be fun to have somewhere to post all my recipes and it keeps them off this page then.
I got to plant most of my tulip and daff bulbs today with mum which was nice. I am excited to see them all come through in spring. I've gone a bit crazy with the tulip bulbs but it will be worth it. Our garden is going to be blooming wonderful!
Blooming. I wonder if I am going through a blooming stage in my life at the moment? I feel most probably I am at that point where the bulb has sprouted and the stem grown but the beautiful blooming flower is still safely tucked away inside the petals.
I don't know though, maybe in 5 years time I will look back on this time and think 'Yup, you were blooming then'. I know now when I reflect on the years gone by I was blooming at times when I didn't necessarily think I was.
I wonder sometimes how differently life would have turned out if I had made different decisions and taken different paths but I am so grateful that I took the ones I did. Would it have been nice to travel around Canada or go and work in America? Sure it would have but if this period of illness was an unchangeable aspect of my life would a travelling buddy have cared for me in the way Tony has? No. Would photo's of sunsets make me smile inside and out in the way Amelia-Rose does? Definitely not.
I believe every word I have spoken, every turn I have made, every decision I have mulled over, every leap of faith I have thrown myself into to, every step I have taken has led me exactly where I am right now and this is where I am meant to be to give me the strength I need to succeed in spite of my health.
When I was ten my mum and I went to stay with our friends in Halifax, Nova Scotia in Canada. One day we went to a farmers market and there was a chap there busking. He was absolutely fantastic and my mum and I decided to buy his album together. To this day it is one of my favourite albums and tragically you can't get it anymore although Raghu Lokanathan is still going strong (www.raghumusic.com)One There is a line in one of the songs that has followed me around for the past 15 years and regularly pops into my head when I meet new people.
"If you ask me where I'm from I'll say everywhere I've ever been"
Monday 7 October 2013
Mind over matter
I've been really proud of the 'head space' I have been in over the weekend. Every now and again I have to stop, regroup and really force myself to pause and reconnect. I think starting the raw food lifestyle again (I don't like to call it a 'diet' as people automatically associate that with weight loss) has given me a real boost. I am aware I've lost a lot confidence in my body recently because it feels so 'out of my hands' but taking the time to prepare myself fully raw dishes and knowing that I am nurturing my body in such an efficient way has possibly started to bridge the gap between body and mind.
What makes me think that is that this weekend has been a horrendous pain weekend. Horrendous. Saturday morning was ok and I was grateful for that because we took Amelia-Rose to the theatre to see 'A tap dancing Mermaid' which was absolutely wonderful. I've been taking Amelia-Rose to see live productions since she was under 2 and she adores going to see shows. This particular one was a one woman show by Tessa Bide and it was truly magical. http://www.tessabide.com/ Tessa is an amazing performer, we've seen a few of the shows she's been in as we got to know her when she worked at The Lyric but this is the first one she has actually devised herself also.
Anyway, I got through the morning but was feeling worse by the hour as the afternoon set in. Around dinner time I could tell I was going to be in for a rough night. On top of all the regular pain I had 'that' awful stomach ache (see first post!) and my jaw was really bothering me. Throughout the day I had developed a very sore lump on my jaw which was increasing to swell.
The night was every bit as bad as I had expected and I got no sleep. No, that's a lie. I did sleep. I last looked at the clock and it was 4.05am. I woke myself up crying (in pain! boohoo!) at 4.30am. Yes. You read it right. I got 25 minutes sleep! That was it then until 10.30am when I dozed off for two hours and was then awake until 9.30pm! Two and a half hours sleep in 36 hours!
I should have been going out of my mind with all that lot but I wasn't. I really did manage to just accept it. I knew the next 48 hours or so were going to be tough but then everything would calm down and I could carry on.
I was sad that I was sick on the weekend when I cherish them so much now Amelia-Rose is in school part time but it was unavoidable and stressing myself out was only going to make it worse. I knew I did the right thing Sunday texting my mum very early explaining the situation and asking her to take Amelia-Rose for the day. It was harvest festival at church followed by the harvest lunch and my grandparents were down for the weekend. I didn't want her to miss any of that so I accepted that this year I couldn't do these things but she could and it was ok for her to go for the day. I wasn't being a terrible mother by letting her go and admitting to myself it would have just been too much to have a lively four year old ball of energy to entertain all day. I was just being a poorly mum.
Last night before bed I did a 40 minute guided meditation and slept well.
I took this morning slowly and have started on my mission to declutter my drawers but set myself the goal of one drawer.
My jaw is still very sore so I made myself an amazing orange and basil juice with pulp for tea and I didn't insist on a big nutty salad or something that would require a lot of prep.
All of these things make me think that maybe my mind is beginning to process how to live with this in a way that doesn't make me feel like I am missing out, letting everyone down or resenting my body for causing me so much pain.
I have managed to keep my spirit level through a pain 'peak' and I really am incredibly proud of that.
Be blessed x
What makes me think that is that this weekend has been a horrendous pain weekend. Horrendous. Saturday morning was ok and I was grateful for that because we took Amelia-Rose to the theatre to see 'A tap dancing Mermaid' which was absolutely wonderful. I've been taking Amelia-Rose to see live productions since she was under 2 and she adores going to see shows. This particular one was a one woman show by Tessa Bide and it was truly magical. http://www.tessabide.com/ Tessa is an amazing performer, we've seen a few of the shows she's been in as we got to know her when she worked at The Lyric but this is the first one she has actually devised herself also.
Anyway, I got through the morning but was feeling worse by the hour as the afternoon set in. Around dinner time I could tell I was going to be in for a rough night. On top of all the regular pain I had 'that' awful stomach ache (see first post!) and my jaw was really bothering me. Throughout the day I had developed a very sore lump on my jaw which was increasing to swell.
The night was every bit as bad as I had expected and I got no sleep. No, that's a lie. I did sleep. I last looked at the clock and it was 4.05am. I woke myself up crying (in pain! boohoo!) at 4.30am. Yes. You read it right. I got 25 minutes sleep! That was it then until 10.30am when I dozed off for two hours and was then awake until 9.30pm! Two and a half hours sleep in 36 hours!
I should have been going out of my mind with all that lot but I wasn't. I really did manage to just accept it. I knew the next 48 hours or so were going to be tough but then everything would calm down and I could carry on.
I was sad that I was sick on the weekend when I cherish them so much now Amelia-Rose is in school part time but it was unavoidable and stressing myself out was only going to make it worse. I knew I did the right thing Sunday texting my mum very early explaining the situation and asking her to take Amelia-Rose for the day. It was harvest festival at church followed by the harvest lunch and my grandparents were down for the weekend. I didn't want her to miss any of that so I accepted that this year I couldn't do these things but she could and it was ok for her to go for the day. I wasn't being a terrible mother by letting her go and admitting to myself it would have just been too much to have a lively four year old ball of energy to entertain all day. I was just being a poorly mum.
Last night before bed I did a 40 minute guided meditation and slept well.
I took this morning slowly and have started on my mission to declutter my drawers but set myself the goal of one drawer.
My jaw is still very sore so I made myself an amazing orange and basil juice with pulp for tea and I didn't insist on a big nutty salad or something that would require a lot of prep.
All of these things make me think that maybe my mind is beginning to process how to live with this in a way that doesn't make me feel like I am missing out, letting everyone down or resenting my body for causing me so much pain.
I have managed to keep my spirit level through a pain 'peak' and I really am incredibly proud of that.
Be blessed x
Saturday 5 October 2013
How can I keep from singing?
Well today something very exciting happened! I was able to set up the official facebook page for a little something that given me so much strength over the past 10 months. I have an album coming out! Or rather, we have an album coming out! Go check it out, no, read this then go check it out! www.facebook.com/unexpectedsongbird
I want to take you on the journey that through the last four years had brought me to this moment.
A few months after we relocated to Dorset in 2009 I plucked up the courage to sing a beautiful song written by the incredibly talented Steve Richie (who use to be a member of my favourite folk band Tanglefoot before they disbanded) in church. The song holds a very special place in my heart because it was the song that finished playing just moments before Amelia-Rose was born. In my opinion it is one of the most beautiful songs ever written and I would urge you all to find a way to listen to it. I am sure it is available in other places also but I know it is on spotify. The song is called 'For the day'.
No one in the parish knew I could sing and it was the first time for 7 years I had sung in public. Singing has always been a passion of mine but I use to suffer with the most awful stage fright and whilst I didn't 'choke' on stage in the days leading up to a concert I would feel sick!
Our church music group had a fabulous sax player called Dan (who has since gone on to be a really valued person in my life. Amelia-Rose calls him 'Granddad Dan') and he asked me if I had ever sung Jazz, I told him I hadn't but I had always wanted to give it and a go and before I knew it I was in his front room looking through song books and refusing to sing into the microphone because there were builders outside working on his house!
Through hours of patience and practise Dan got me singing into the mic and before long we had our first gig!
At first Dan and I would use backing tracks but we were given the phone number of a piano player and went along to meet him with the hope that we might be able to preform together. Dan and I had been asked along to participate in the open mic session at our local Jazz café and we had no desire to turn up there with our backing tracks!
Around the same time we also met a guitar player called Adrian so we no longer needed the backing tracks! Whilst Steve, Dan, Adrian and I never preformed together Dan and I would switch between Steve and Adrian depending upon who was available when we had a gig.
Dan and I eventually went our own ways when he put together a new band and I was keen to try new things. We are still firm friends to this day and I fully accredit me finding my way back to singing to him! Not many people would have put up with my silly nerves in those early days!
Steve was looking at putting together a new much smaller group and was interested in trying different material. Right before my hips started to get bad Michael, a fantastic trumpet player joined Steve and I and we began rehearsing and looking for our audience.
When my hips got bad I wasn't well enough to commit to gigs let alone preform and that could have been the end of the story but really it is just the beginning.
Steve and I got together in January 2013 with the intention of talking about trying to write some new material. I took a very deep breath and showed him some lyrics I had written using a direct quote from something Tony had said to me one night when he was consoling me. An hour later we had a song! We were both blown away by the ease in which our creative energy seemed to mix and we were excited enough to commit to trying another song.
Steve emailed me a piece of music he had put together and asked if I had any ideas for lyrics that might work. He gave me one phrase and left the rest to me. I won't lie, it felt like an enormous responsibility. I have Steve on a bit of a pedestal and the idea that he was trusting me with a piece of his music was mind blowing!
Steve has been a professional musician his entire adult life and worked with some very successful bands. He knows the business and has played to packed out arenas. It isn't just his success though that makes me admire him so much. He is, in my opinion, genuinely one of the wisest people you will ever meet and he has this amazing ability to draw out your own inner wisdom without you even trying.
The following week we were back in the studio and it was time to take another deep breath and sing what I had written. You can imagine my internal terror when a verse and chorus in he stopped me... "That's it" he said " Lets record it!" *PHEW*
The rest as they say is history. Steve and I have spent many many hours together writing and recording and talking late into the night and not writing or recording at all!
It is a very unexpected creative relationship and friendship (not least because of the 38 year age gap) but a very real one. Steve and I seem to draw out each other's creative process and compliment each others personalities. I couldn't tell you what 'it' is but we have 'it'. There is never any frustration or clash of ideas, sometimes I think we're sharing the same thoughts!
So now, 10 months on and we have one song left to record and a big album launch at our local Arts Centre on the 7th February 2014.
So how did we decide on the name 'Songbird'? Well, to be honest with you I don't think we did decide. I think it was given to us. A gift that God, fate, the universe whatever you chose to believe in gave us.
Rewind back 3 years and out of nowhere Dan started to call me songbird in our email exchanges. I thought it was very sweet and it kind of stuck but it really was only between Dan and I.
Rewind 22 months and Steve, Michael and I were trying to think of a group name for the three of us to preform under. "How about songbird?" Suggested Michael and that was it. I don't think we could ever have been called anything else.
Writing the album has given me a place to channel and work through a lot of my emotions about going from perfectly healthy to chronically ill. Steve's studio has become a little haven for me where I go and I know even if I don't sing a note I will leave feeling lighter and affirmed.
And singing? What does singing do for me? Singing makes my soul soar like an eagle over a canyon. When I am singing I do not belong to this broken body, I am content, I am weightless, I'm boundless, I am free.
I have always been a huge fan of Enya's music and I think perhaps her version of this old hymn sums it all up for me.
"How Can I Keep From Singing?"
When tyrants tremble in their fear
And hear their death knell ringing,
When friends rejoice both far and near
How can I keep from singing?
In prison cell and dungeon vile
Our thoughts to them are winging,
When friends by shame are undefiled
How can I keep from singing?
I want to take you on the journey that through the last four years had brought me to this moment.
A few months after we relocated to Dorset in 2009 I plucked up the courage to sing a beautiful song written by the incredibly talented Steve Richie (who use to be a member of my favourite folk band Tanglefoot before they disbanded) in church. The song holds a very special place in my heart because it was the song that finished playing just moments before Amelia-Rose was born. In my opinion it is one of the most beautiful songs ever written and I would urge you all to find a way to listen to it. I am sure it is available in other places also but I know it is on spotify. The song is called 'For the day'.
No one in the parish knew I could sing and it was the first time for 7 years I had sung in public. Singing has always been a passion of mine but I use to suffer with the most awful stage fright and whilst I didn't 'choke' on stage in the days leading up to a concert I would feel sick!
Our church music group had a fabulous sax player called Dan (who has since gone on to be a really valued person in my life. Amelia-Rose calls him 'Granddad Dan') and he asked me if I had ever sung Jazz, I told him I hadn't but I had always wanted to give it and a go and before I knew it I was in his front room looking through song books and refusing to sing into the microphone because there were builders outside working on his house!
Through hours of patience and practise Dan got me singing into the mic and before long we had our first gig!
At first Dan and I would use backing tracks but we were given the phone number of a piano player and went along to meet him with the hope that we might be able to preform together. Dan and I had been asked along to participate in the open mic session at our local Jazz café and we had no desire to turn up there with our backing tracks!
Around the same time we also met a guitar player called Adrian so we no longer needed the backing tracks! Whilst Steve, Dan, Adrian and I never preformed together Dan and I would switch between Steve and Adrian depending upon who was available when we had a gig.
Dan and I eventually went our own ways when he put together a new band and I was keen to try new things. We are still firm friends to this day and I fully accredit me finding my way back to singing to him! Not many people would have put up with my silly nerves in those early days!
Steve was looking at putting together a new much smaller group and was interested in trying different material. Right before my hips started to get bad Michael, a fantastic trumpet player joined Steve and I and we began rehearsing and looking for our audience.
When my hips got bad I wasn't well enough to commit to gigs let alone preform and that could have been the end of the story but really it is just the beginning.
Steve and I got together in January 2013 with the intention of talking about trying to write some new material. I took a very deep breath and showed him some lyrics I had written using a direct quote from something Tony had said to me one night when he was consoling me. An hour later we had a song! We were both blown away by the ease in which our creative energy seemed to mix and we were excited enough to commit to trying another song.
Steve emailed me a piece of music he had put together and asked if I had any ideas for lyrics that might work. He gave me one phrase and left the rest to me. I won't lie, it felt like an enormous responsibility. I have Steve on a bit of a pedestal and the idea that he was trusting me with a piece of his music was mind blowing!
Steve has been a professional musician his entire adult life and worked with some very successful bands. He knows the business and has played to packed out arenas. It isn't just his success though that makes me admire him so much. He is, in my opinion, genuinely one of the wisest people you will ever meet and he has this amazing ability to draw out your own inner wisdom without you even trying.
The following week we were back in the studio and it was time to take another deep breath and sing what I had written. You can imagine my internal terror when a verse and chorus in he stopped me... "That's it" he said " Lets record it!" *PHEW*
The rest as they say is history. Steve and I have spent many many hours together writing and recording and talking late into the night and not writing or recording at all!
It is a very unexpected creative relationship and friendship (not least because of the 38 year age gap) but a very real one. Steve and I seem to draw out each other's creative process and compliment each others personalities. I couldn't tell you what 'it' is but we have 'it'. There is never any frustration or clash of ideas, sometimes I think we're sharing the same thoughts!
So now, 10 months on and we have one song left to record and a big album launch at our local Arts Centre on the 7th February 2014.
So how did we decide on the name 'Songbird'? Well, to be honest with you I don't think we did decide. I think it was given to us. A gift that God, fate, the universe whatever you chose to believe in gave us.
Rewind back 3 years and out of nowhere Dan started to call me songbird in our email exchanges. I thought it was very sweet and it kind of stuck but it really was only between Dan and I.
Rewind 22 months and Steve, Michael and I were trying to think of a group name for the three of us to preform under. "How about songbird?" Suggested Michael and that was it. I don't think we could ever have been called anything else.
Writing the album has given me a place to channel and work through a lot of my emotions about going from perfectly healthy to chronically ill. Steve's studio has become a little haven for me where I go and I know even if I don't sing a note I will leave feeling lighter and affirmed.
And singing? What does singing do for me? Singing makes my soul soar like an eagle over a canyon. When I am singing I do not belong to this broken body, I am content, I am weightless, I'm boundless, I am free.
I have always been a huge fan of Enya's music and I think perhaps her version of this old hymn sums it all up for me.
"How Can I Keep From Singing?"
My life goes on in endless song
Above earth's lamentations,
I hear the real, though far-off hymn
That hails a new creation.
Through all the tumult and the strife
I hear it's music ringing,
It sounds an echo in my soul.
How can I keep from singing?
While though the tempest loudly roars,
I hear the truth, it liveth.
And though the darkness 'round me close,
Songs in the night it giveth.
No storm can shake my inmost calm,
While to that rock I'm clinging.
Since love is lord of heaven and earth
How can I keep from singing?
Above earth's lamentations,
I hear the real, though far-off hymn
That hails a new creation.
Through all the tumult and the strife
I hear it's music ringing,
It sounds an echo in my soul.
How can I keep from singing?
While though the tempest loudly roars,
I hear the truth, it liveth.
And though the darkness 'round me close,
Songs in the night it giveth.
No storm can shake my inmost calm,
While to that rock I'm clinging.
Since love is lord of heaven and earth
How can I keep from singing?
When tyrants tremble in their fear
And hear their death knell ringing,
When friends rejoice both far and near
How can I keep from singing?
In prison cell and dungeon vile
Our thoughts to them are winging,
When friends by shame are undefiled
How can I keep from singing?
Friday 4 October 2013
Happy Friday
Today started off a bit shaky when I woke up feeling really dazed and confused. I was alone upstairs and it took me a few minutes to realise that Tony and Amelia-Rose were downstairs. I couldn't quite figure out why the house was so quiet!
To kick the day off I had a yellow pepper, apple and grape juice (with pulp, I always keep the pulp in because I can't bare wasting so much food by not drinking it!) which was once again hijacked by Amelia-Rose. WOW! It was SO good, I have a bit of 'throw it all in' approach to making juices. If I think the flavour combination will work together I will give it a try!
I then popped into town to stock up on dried fruit and nuts, dashed home so I was there to take Amelia-Rose to school with Tony and then nipped back into town to get a 'Get Well Soon' present for lovely Gerry who got sick yesterday.
After school I took Amelia-Rose to the chocolate shop which has been our Friday tradition for a long time now. We use to go on a Friday morning but since she started school we have been going on a Friday afternoon. After that we did a bit of clothes shopping for the little lady as the weather is turning cold and then went to my parents house for dinner as my grandparents are down.
All in all it sounds like a pretty average day but it wasn't average... It was a really really good day! Today has been one of those days where everything went my way and I have felt in really high spirits.
All the passers by on the street were super smiley and on more then one occasion a complete stranger stopped to help me out or gave way to me so I could cross the road, one chap gave me the biggest smile and told me to 'Have a nice day' after I thanked him for holding a door open for me.
I love going into town at this time of year because all of the tourists have gone home and it's like all the locals are breathing a sigh of relief. Tourism is vital to our seaside town, I would never wish it away because it's fantastic for local traders but it is nice when the holiday season is over and life gets back to normal! It's sort of like getting the town back.
One day I will write a full post about our lovely town but I want to get out with my camera first so I can include a decent amount of photos.
Today for no reason in particular has filled me with hope and I am going to try to hold on to that hope for as long as possible! I have decided that I am going to really try to stick to a more holistic approach to my illness and blog about it as I go along. I have always been holistic, especially in my approach to parenting but I am yet to fully commit that to my illness.
Writing everyday this week has reignited my passion for writing and I am finding myself looking forward to the time that I can come and sit with the laptop and start writing. I feel a bit of an excited buzz that I have fallen back in love with something that has always been such a huge part of life and I am excited to see what comes from it.
Having said that, tonight's post is a very short one because I have been working on a different writing project and now I need my sleep!
Blessings x
To kick the day off I had a yellow pepper, apple and grape juice (with pulp, I always keep the pulp in because I can't bare wasting so much food by not drinking it!) which was once again hijacked by Amelia-Rose. WOW! It was SO good, I have a bit of 'throw it all in' approach to making juices. If I think the flavour combination will work together I will give it a try!
I then popped into town to stock up on dried fruit and nuts, dashed home so I was there to take Amelia-Rose to school with Tony and then nipped back into town to get a 'Get Well Soon' present for lovely Gerry who got sick yesterday.
After school I took Amelia-Rose to the chocolate shop which has been our Friday tradition for a long time now. We use to go on a Friday morning but since she started school we have been going on a Friday afternoon. After that we did a bit of clothes shopping for the little lady as the weather is turning cold and then went to my parents house for dinner as my grandparents are down.
All in all it sounds like a pretty average day but it wasn't average... It was a really really good day! Today has been one of those days where everything went my way and I have felt in really high spirits.
All the passers by on the street were super smiley and on more then one occasion a complete stranger stopped to help me out or gave way to me so I could cross the road, one chap gave me the biggest smile and told me to 'Have a nice day' after I thanked him for holding a door open for me.
I love going into town at this time of year because all of the tourists have gone home and it's like all the locals are breathing a sigh of relief. Tourism is vital to our seaside town, I would never wish it away because it's fantastic for local traders but it is nice when the holiday season is over and life gets back to normal! It's sort of like getting the town back.
One day I will write a full post about our lovely town but I want to get out with my camera first so I can include a decent amount of photos.
Today for no reason in particular has filled me with hope and I am going to try to hold on to that hope for as long as possible! I have decided that I am going to really try to stick to a more holistic approach to my illness and blog about it as I go along. I have always been holistic, especially in my approach to parenting but I am yet to fully commit that to my illness.
Writing everyday this week has reignited my passion for writing and I am finding myself looking forward to the time that I can come and sit with the laptop and start writing. I feel a bit of an excited buzz that I have fallen back in love with something that has always been such a huge part of life and I am excited to see what comes from it.
Having said that, tonight's post is a very short one because I have been working on a different writing project and now I need my sleep!
Blessings x
Thursday 3 October 2013
Roar....roar....RAAAAAAW!
Most people think I am absolutely insane for choosing to follow a raw food diet (once I have explained to them what it is!) so, as I have decided to fully recommit to it I thought I would reflect on the reason why I do it.
Many many years ago I was sitting next to a lady on the train on the way to college and she had a lunch box full of raw broccoli, cauliflower, carrots and snap peas. She offered me some and started to talk to me about why they were raw. She was an 'older' lady, I would guess in her mid 60's and she told me she had had the most awful arthritis in her hands and her doctor had told her to eat all of her vegetables raw. Since then the pain in her hands had completely subsided and she had sworn never to eat a cooked vegetable again!
A few months ago I saw a documentary on Netflix which was all about the benefits of raw food, I almost couldn't believe what I was seeing and decided to do some research. I spent hours reading articles and recipes and found myself on youtube searching 'raw food'. It all seemed too good to be true so I decided to give it a go. To not put too much pressure on myself I decided I would aim for 70% raw. I was drinking more water then I had done for years, making myself the most amazing juices and rediscovered the true taste of food. I was hooked! I brought myself a little indoor 'sprout house' so I could sprout my own seeds and got into the habit of always having nuts soaking in the fridge.
My energy level increased greatly and I felt like I was almost one step ahead of myself all the time. For the first time in a long time I wasn't dog tired all the time. The most amazing thing to happen though was the pain in my hand almost completely subsided.
Unfortunately when life got very hectic I fell off the raw wagon, landed in a pile of processed carbs and immediately my body responded. I felt sluggish and slow and not only did the pain and swelling come back in my hand it came back worse then it has ever been. I actually completely lost the use of my right hand and ended up in A&E one Saturday morning in agony. My energy was at an all time low which in turn brought my spirit down and I became stuck in a vicious circle that has taken me a while to break out of.
Following the raw lifestyle is very time consuming, when you're doing it that isn't a problem because you feel so great but getting yourself back into it when you've stopped is difficult.
As this week has been a week of release I have decided I am releasing my body from the constraints of a non raw diet and have vowed to myself that I will fully commit again back to being raw.
So today for breakfast I had a apple, carrot and pomegranate juice with the pulp which was amazing. It was so refreshing. Amelia-Rose wanted in on the juicy action and I didn't get the last of my own juice because she pinched it off me!
Many many years ago I was sitting next to a lady on the train on the way to college and she had a lunch box full of raw broccoli, cauliflower, carrots and snap peas. She offered me some and started to talk to me about why they were raw. She was an 'older' lady, I would guess in her mid 60's and she told me she had had the most awful arthritis in her hands and her doctor had told her to eat all of her vegetables raw. Since then the pain in her hands had completely subsided and she had sworn never to eat a cooked vegetable again!
A few months ago I saw a documentary on Netflix which was all about the benefits of raw food, I almost couldn't believe what I was seeing and decided to do some research. I spent hours reading articles and recipes and found myself on youtube searching 'raw food'. It all seemed too good to be true so I decided to give it a go. To not put too much pressure on myself I decided I would aim for 70% raw. I was drinking more water then I had done for years, making myself the most amazing juices and rediscovered the true taste of food. I was hooked! I brought myself a little indoor 'sprout house' so I could sprout my own seeds and got into the habit of always having nuts soaking in the fridge.
My energy level increased greatly and I felt like I was almost one step ahead of myself all the time. For the first time in a long time I wasn't dog tired all the time. The most amazing thing to happen though was the pain in my hand almost completely subsided.
Unfortunately when life got very hectic I fell off the raw wagon, landed in a pile of processed carbs and immediately my body responded. I felt sluggish and slow and not only did the pain and swelling come back in my hand it came back worse then it has ever been. I actually completely lost the use of my right hand and ended up in A&E one Saturday morning in agony. My energy was at an all time low which in turn brought my spirit down and I became stuck in a vicious circle that has taken me a while to break out of.
Following the raw lifestyle is very time consuming, when you're doing it that isn't a problem because you feel so great but getting yourself back into it when you've stopped is difficult.
As this week has been a week of release I have decided I am releasing my body from the constraints of a non raw diet and have vowed to myself that I will fully commit again back to being raw.
So today for breakfast I had a apple, carrot and pomegranate juice with the pulp which was amazing. It was so refreshing. Amelia-Rose wanted in on the juicy action and I didn't get the last of my own juice because she pinched it off me!
For lunch I made myself a stuffed pepper which was just a playground full of nutritional fun and for dinner I finished my leftovers from lunch and munched my way through some fruit.
Because I haven't been eating raw for over a month now I will probably experience some detox symptoms over the next few days (flu like feelings) but once my body is free of all the toxins again the only way it up!
So why do I do it? Having read the above you might think it is pretty obvious why I do it! It makes me feel great! It runs deeper then that though. Like it or not my body is not what it should be, it has to work harder then most peoples just to achieve a level of productivity that would see most people taking a sick day from work!
When you are unwell for a long period of time or are living with chronic pain you realise just how important your body really is. If your body is broken it is going to cause you a whole world of heart ache one way or another! An unhealthy body often leads to an unhealthy mind and spirit. It is impossible to be happy all the time when it feels like your own body is working against you.
One side effect of my illness and pain is that I see my body as 'the enemy'. It causes me pain and fatigue and I often feel trapped inside it.
When I started the raw food diet I was aware that the rift between body and mind was closing. Hippocrates a Greek physician who walked the earth some three hundred years BC said
'Let food be thy medicine and medicine be thy food'
I don't want to feel resentment towards my body when something as simple as food can help physically heal my body!
The preparation time that goes into raw also gives me time to reflect and be grateful for the food that I am eating. When I can get the balance right it allows me to approach all my meals mindfully which again bridges the gap between mind and body.
I want to love, appreciate and respect my body and move beyond this feeling that it has let me down in some way.
Today I made sure I set aside some time to begin writing my own personal raw food cookbook and am excited to get this show on the road!
Blessings x
Wednesday 2 October 2013
Pausing and Accepting
So, it would seem that God does in deed work in mysterious ways.
As you know I've had a really tough few days as I wasn't able to go on a trip I had planned with two of my friends. I have been looking forward to it for months and was crushed that I wasn't well enough to go.
It triggered the enormity of my whole situation on me and I had a really rough time working through it.
Anyway, late last night I got a text message from one of my friends telling me they had travelled to Bath and had a nice day but just as they were leaving to go to the hotel my other friend started feeling really poorly and was promptly violently sick. A message from her husband (that came through just as she herself started being unwell!) confirmed that he was sick too and their little girl had also been sick on the way home from school. They knew they had to drive home and my poor friend was sick on and off the whole way home.
THANK GOD I wasn't with them! For one thing turning round and having to face such a long journey home when I already would have travelled a lot that day would have been awful. Throw a day shopping on top of that and I would have been wiped out in bed for days!
The thing this has reminded me is that sometimes when things happen you just have to pause and accept it. Trusting that one day it will become clear why it happened. God had my back on this one.
I am also in a much better place emotionally then I have been since August. Truly. No mask needed. The whole not being able to go to Bath thing triggered something so much bigger then just the disappointment about the trip and I honestly believe I HAD to go through that. To release it, get it out in the world, out of my head and out of my heart. The shock and numbness of the past 4 weeks has been taking up so much space within my spirit there has been little room for positive drive and resolve. Now I have let that I out I have felt so much more positive today and I think, for the first time in 20 months I took the first step to truly accepting this.
I met up with my friend Gerry (or 'Lovely Gerry' according to my mobile phone address book) and we had a look through the market. We popped down to a part of town that I don't get to much now a days and I treated myself to some new make up and then we popped into a clothes store with a 50% sale and I treated myself to some lovely winter clothes.
When we went to try the clothes on it became apparent their was no disabled changing room (which, considering it was a national chain and not a small independent shop really surprised me!) Gerry went and asked the lady behind the counter if their was a seat we could use and she pointed to a very small very low stool that is there for people to try shoes on. As soon as I saw it I had to say to Gerry there was no way I could sit on it, I would have 'clicked' (semi dislocated) by hip! So, we scooted right down to the bottom of the very narrow line of the changing rooms and I put my scooter opposite the changing room and turned the seat around so I was effectively sitting facing into the changing room. Gerry then took the curtain and pulled it across the hall creating my own disabled changing room.
When we went to pay I wanted to use some of the gift cards I got for my birthday, I placed myself down the side of the counter between the counter and the jewellery rail so I wasn't in the way but still able to interact properly with the shop assistant. The way the gift cards work is a bit complicated and they had to ring the organisation to find out how much was on the cards because they had to put in the amount and then swipe the card. It was a bit a faff but just one of those things. The girl who had been serving us asked us to go down to the next till so she could serve the lady behind us whilst the cards got sorted. I had absolutely no problem at all with them carrying on serving but now I had to move from my perfect 'out the way but able to interact' spot and was forced then to be sat in the middle of the two tills where I couldn't properly use the counter or interact with the sales assistant.
A few weeks/months ago an experience as silly as that would have internally really upset me. It would have highlighted for me that I wasn't 'able bodied' and left me feeling like I was just in the way and shouldn't be there. Today though, it was different somehow. I realised it wasn't them treating me differently or being inconsiderate. They were just ignorant. Now ignorant may seem like a harsh word but I don't mean it in a derogatory way. They really just didn't have a clue that by not having a disabled changing room and asking us to move further down (when they could have just swapped tills!) it would potentially have a negative impact on our shopping trip.
I accepted their ignorance and decided instead of stewing on it for days or internalising it and it affecting my self worth I would write a letter to the head office about the changing room situation. It won't be a shouty cross letter about how outraged I was in the complete lack of suitability for their disabled patrons but just calmly explaining the impact it had. If I hadn't had someone else there me I simply wouldn't have been able to buy anything without trying it on first.
I felt really good that I was able to keep the whole experience in perspective. It was nothing personal.
We live in a very busy beautiful seaside market town which is flooded with thousands of tourists every year and the snide comments I get from people when I am out on my mobility scooter has really knocked my confidence. I had no idea people could be so cruel to a complete stranger. After a summer of almost weekly verbal abuse I think understandably when I am faced with any kind of inequality due to my disability I take it personally.
The first time someone had a 'pop' on me on the scooter I was so shocked I couldn't actually respond at all. Then the following week I decided to pop into town by myself as Tony and Amelia-Rose were at Saturdads.
It was a glorious sunny day and thanks to the success of Broadchurch the town was heaving. When I saw how many people there were I was so excited for all the local independent shops and market stall traders. The impact of last summers awful weather has hit them all hard and it was great to see so much business for them! When I was making my way down the pavement in a single file line just like everyone else was I couldn't believe it when a man pushed his way past me glared at me and said 'It's too busy for YOU to be out today. Stupid woman' As is I somehow was the reason that the streets were so busy and as a consequence had no right to be there.
A little further down the street there was a man stood blocking a shop door way with 5 (yes 5) little yappy dogs that were going mad at everyone who walked past and lurching out in front of people if another dog walked by. Everyone in that little area was clearly annoyed by these dogs but one man took it upon himself to tell me that I was the problem and should 'get off the path'. Due to the dogs and the very small pavement only one line of foot traffic could move at a time. North or south. I was just about to pull away having waited patiently for my turn and a kind lady telling me to come through when the man stood behind me huffed his 'this is f*cking ridiculous' directly at me and walked through the gap, promptly followed by everyone behind him! Talk about feeling invisible! In the end the woman told whoever it was behind me to wait for a minute so I could go. I had only been out the house for 20 minutes but was desperate to go home.
I would LOVE to tell you that this kind of verbal bashing is a rare thing and everything you read in the papers about disabled inequality is untrue but from my first hand experience it is very very real. That is why something as silly as the shopping experience I had today would have at one point really upset me. My confidence has taken a big hit this summer but today proved to me I am healing.
I also didn't beat myself because when I got home I had to go and sit on the bed. I have perceived needing more rest and not being able to be on the go go go all the time as a sort of failure. Like I am letting myself and my family down. Today though I was able to not only think but also say out loud I'd had a lovely 2 hours shopping but I really needed a rest and if I didn't rest I knew I was going to pay for it. I accepted that for now anyway I only have the ability to be active (even though I am sitting down) for an hour or so at a time. My parents would call it eating an elephant one bite at a time. By acknowledging that I needed to rest then meant by the time my daughter got in from school I was able to give her my full attention.
I have decided I am going back on the raw food diet so I took my rest time as an opportunity to start writing my own raw food recipe book with my favourite online recipes. I will write more about why I follow a raw food diet in another post but I have well and truly fallen off the wagon recently and I feel pants as a result. For me this diet isn't about weight loss at all, nor is it a 'fad'. It is a lifestyle choice and one of the ways I manage my pain. The power of good food! Watch this space to learn more.
Be blessed x
As you know I've had a really tough few days as I wasn't able to go on a trip I had planned with two of my friends. I have been looking forward to it for months and was crushed that I wasn't well enough to go.
It triggered the enormity of my whole situation on me and I had a really rough time working through it.
Anyway, late last night I got a text message from one of my friends telling me they had travelled to Bath and had a nice day but just as they were leaving to go to the hotel my other friend started feeling really poorly and was promptly violently sick. A message from her husband (that came through just as she herself started being unwell!) confirmed that he was sick too and their little girl had also been sick on the way home from school. They knew they had to drive home and my poor friend was sick on and off the whole way home.
THANK GOD I wasn't with them! For one thing turning round and having to face such a long journey home when I already would have travelled a lot that day would have been awful. Throw a day shopping on top of that and I would have been wiped out in bed for days!
The thing this has reminded me is that sometimes when things happen you just have to pause and accept it. Trusting that one day it will become clear why it happened. God had my back on this one.
I am also in a much better place emotionally then I have been since August. Truly. No mask needed. The whole not being able to go to Bath thing triggered something so much bigger then just the disappointment about the trip and I honestly believe I HAD to go through that. To release it, get it out in the world, out of my head and out of my heart. The shock and numbness of the past 4 weeks has been taking up so much space within my spirit there has been little room for positive drive and resolve. Now I have let that I out I have felt so much more positive today and I think, for the first time in 20 months I took the first step to truly accepting this.
I met up with my friend Gerry (or 'Lovely Gerry' according to my mobile phone address book) and we had a look through the market. We popped down to a part of town that I don't get to much now a days and I treated myself to some new make up and then we popped into a clothes store with a 50% sale and I treated myself to some lovely winter clothes.
When we went to try the clothes on it became apparent their was no disabled changing room (which, considering it was a national chain and not a small independent shop really surprised me!) Gerry went and asked the lady behind the counter if their was a seat we could use and she pointed to a very small very low stool that is there for people to try shoes on. As soon as I saw it I had to say to Gerry there was no way I could sit on it, I would have 'clicked' (semi dislocated) by hip! So, we scooted right down to the bottom of the very narrow line of the changing rooms and I put my scooter opposite the changing room and turned the seat around so I was effectively sitting facing into the changing room. Gerry then took the curtain and pulled it across the hall creating my own disabled changing room.
When we went to pay I wanted to use some of the gift cards I got for my birthday, I placed myself down the side of the counter between the counter and the jewellery rail so I wasn't in the way but still able to interact properly with the shop assistant. The way the gift cards work is a bit complicated and they had to ring the organisation to find out how much was on the cards because they had to put in the amount and then swipe the card. It was a bit a faff but just one of those things. The girl who had been serving us asked us to go down to the next till so she could serve the lady behind us whilst the cards got sorted. I had absolutely no problem at all with them carrying on serving but now I had to move from my perfect 'out the way but able to interact' spot and was forced then to be sat in the middle of the two tills where I couldn't properly use the counter or interact with the sales assistant.
A few weeks/months ago an experience as silly as that would have internally really upset me. It would have highlighted for me that I wasn't 'able bodied' and left me feeling like I was just in the way and shouldn't be there. Today though, it was different somehow. I realised it wasn't them treating me differently or being inconsiderate. They were just ignorant. Now ignorant may seem like a harsh word but I don't mean it in a derogatory way. They really just didn't have a clue that by not having a disabled changing room and asking us to move further down (when they could have just swapped tills!) it would potentially have a negative impact on our shopping trip.
I accepted their ignorance and decided instead of stewing on it for days or internalising it and it affecting my self worth I would write a letter to the head office about the changing room situation. It won't be a shouty cross letter about how outraged I was in the complete lack of suitability for their disabled patrons but just calmly explaining the impact it had. If I hadn't had someone else there me I simply wouldn't have been able to buy anything without trying it on first.
I felt really good that I was able to keep the whole experience in perspective. It was nothing personal.
We live in a very busy beautiful seaside market town which is flooded with thousands of tourists every year and the snide comments I get from people when I am out on my mobility scooter has really knocked my confidence. I had no idea people could be so cruel to a complete stranger. After a summer of almost weekly verbal abuse I think understandably when I am faced with any kind of inequality due to my disability I take it personally.
The first time someone had a 'pop' on me on the scooter I was so shocked I couldn't actually respond at all. Then the following week I decided to pop into town by myself as Tony and Amelia-Rose were at Saturdads.
It was a glorious sunny day and thanks to the success of Broadchurch the town was heaving. When I saw how many people there were I was so excited for all the local independent shops and market stall traders. The impact of last summers awful weather has hit them all hard and it was great to see so much business for them! When I was making my way down the pavement in a single file line just like everyone else was I couldn't believe it when a man pushed his way past me glared at me and said 'It's too busy for YOU to be out today. Stupid woman' As is I somehow was the reason that the streets were so busy and as a consequence had no right to be there.
A little further down the street there was a man stood blocking a shop door way with 5 (yes 5) little yappy dogs that were going mad at everyone who walked past and lurching out in front of people if another dog walked by. Everyone in that little area was clearly annoyed by these dogs but one man took it upon himself to tell me that I was the problem and should 'get off the path'. Due to the dogs and the very small pavement only one line of foot traffic could move at a time. North or south. I was just about to pull away having waited patiently for my turn and a kind lady telling me to come through when the man stood behind me huffed his 'this is f*cking ridiculous' directly at me and walked through the gap, promptly followed by everyone behind him! Talk about feeling invisible! In the end the woman told whoever it was behind me to wait for a minute so I could go. I had only been out the house for 20 minutes but was desperate to go home.
I would LOVE to tell you that this kind of verbal bashing is a rare thing and everything you read in the papers about disabled inequality is untrue but from my first hand experience it is very very real. That is why something as silly as the shopping experience I had today would have at one point really upset me. My confidence has taken a big hit this summer but today proved to me I am healing.
I also didn't beat myself because when I got home I had to go and sit on the bed. I have perceived needing more rest and not being able to be on the go go go all the time as a sort of failure. Like I am letting myself and my family down. Today though I was able to not only think but also say out loud I'd had a lovely 2 hours shopping but I really needed a rest and if I didn't rest I knew I was going to pay for it. I accepted that for now anyway I only have the ability to be active (even though I am sitting down) for an hour or so at a time. My parents would call it eating an elephant one bite at a time. By acknowledging that I needed to rest then meant by the time my daughter got in from school I was able to give her my full attention.
I have decided I am going back on the raw food diet so I took my rest time as an opportunity to start writing my own raw food recipe book with my favourite online recipes. I will write more about why I follow a raw food diet in another post but I have well and truly fallen off the wagon recently and I feel pants as a result. For me this diet isn't about weight loss at all, nor is it a 'fad'. It is a lifestyle choice and one of the ways I manage my pain. The power of good food! Watch this space to learn more.
Be blessed x
Tuesday 1 October 2013
Baby steps
So today is the day that I should have been travelling with my two friends to Marlborough for the day before heading to the travel lodge and then going on to Bath tomorrow. On Sunday it became clear that I wasn't going to be able to go and to say I'm a disappointed is a bit of an understatement. I have been looking forward to this day since the spring.
Yesterday was a really hard day. I didn't get much sleep Sunday night and the disappointment of not being well enough to travel triggered the enormity on this fact... I am disabled.
Disabled.
I am disabled.
Disabled noun ( plural disabilities)
To put things into perspective until the 29th August we thought I was going to get better and return to not only full mobility but also an active and pain free life. Yesterday on the 30th September I fell apart. Today I am assessing the damage and I hope tomorrow I will start picking up the pieces. In the past 4 weeks I have cautiously dipped my toe in the pool of emotion brought on by this reality but it wasn't until I woke up yesterday that I fully submerged myself in it. It was as if I have been balanced on the edge of the pool and yesterday I lost my footing and fell in. I honestly thought I had 'felt' about this but nothing... nothing compares to what happened yesterday.
I wanted to reach out for help but desired to be alone. I shed perhaps a thousand tears. The front I hide behind was dismantled and there exposed lay the reality that for the rest of my life I will manage a chronic illness.
Getting in the car for two hours and going shopping with my girlfriends is never going to be easy. I am not saying it won't happen, because I know me and I know when I get my fight back I will move heaven and earth to have the life I desire but it will always need careful planning and that is what made me sad yesterday. I say sad. I mean devastated.
All of these terms that I am sure will one day become positives are at the moment huge and daunting. 'Managing' 'Preparing' 'Planning' this is how we will need to live our lives from now. I am not saying my life is over because it isn't. It is just never going to be the same again and right now that feels too big.
I have spent my adult life wishing the best for all the people around me I never considered that it might be my life that was hit by this world moving event.
I have been stood in a desert, the dusty cracked ground beneath my feet, the blistering sun beating on my back and yesterday the rain came. It was a rain storm that for a while I thought would actually drown me and sweep me away but today I can see that hopefully it was a storm sufficient enough to nurture everything around it without doing too much permanent damage.
If I could just get my pain under control. If I could just build up my core muscles to support my body and make me more stable. If I could just get a good nights sleep. If I could build a relationship with the local occupational therapists again. If I could allow myself the time and money to go get regular massages or sound baths. If...if...if. I have been living on ifs and what yesterday made me realise is that unless I turn these 'ifs' into 'whens' I am never going to have the resources to manage this consistently.
I need to start accepting that like it or not this is a part of me and I must stop putting so much energy into proving to myself how much I can do in spite of it and ultimately burning myself out. If I can start working on that true acceptance then all the ifs will turn into whens because I will start to do the things I need to do to empower myself to move forward.
I need to accept that for a while there is going to a be huge mountain of emotion for me to walk over and I need to quit trying to go around the mountain. I have to go over the top. It's ok for this to hurt me. It's ok for me to need the extra support I do from my husband, family and friends. The people who pause for just a second to think how enormous this is and acknowledge it and want to be there for us right now accepting nothing in return, these are the people who I think will be in our lives forever. They will forever have a place in our heart and we will be eternally thankful for them. The ones who think this is all just nothing and it's high time for me to get over. They are not people who will be walking down the road with us in 10 years time.
So life may never be completely carefree and to achieve the sense of being carefree will take a lot of productive pain management and resources. I may always be the mum in the wheelchair or on the mobility scooter but no one will ever love my child more then I do and that will make up for everything I can't do. It will make everything I can do even more precious because only I will ever truly know how much effort I am putting in to maintain a level of normality.
I am starting new medication today that I am told will have some nasty side effects for about 2 weeks but could be the start of kicking this Hypermobility Syndromes butt. There are two goals with this medication. 1. To get me the sleep my body needs to compensate for having to work so much harder then a 'normal' body and help me emotionally deal with being in pain all the time (it is exhausting) and 2. Hopefully over time it will turn my bodies response to pain down a bit and help it respond in a more natural and proportionate way.
It will take a while for the medication to work properly so until then I shall carry on. One foot in front of the other. Baby steps for now.
http://www.youtube.com/watch?v=IqF8qR3N-Og
Yesterday was a really hard day. I didn't get much sleep Sunday night and the disappointment of not being well enough to travel triggered the enormity on this fact... I am disabled.
Disabled.
I am disabled.
Disabled noun
I have been so adamant that this isn't going to define me I have tried to ignore it altogether.
To put things into perspective until the 29th August we thought I was going to get better and return to not only full mobility but also an active and pain free life. Yesterday on the 30th September I fell apart. Today I am assessing the damage and I hope tomorrow I will start picking up the pieces. In the past 4 weeks I have cautiously dipped my toe in the pool of emotion brought on by this reality but it wasn't until I woke up yesterday that I fully submerged myself in it. It was as if I have been balanced on the edge of the pool and yesterday I lost my footing and fell in. I honestly thought I had 'felt' about this but nothing... nothing compares to what happened yesterday.
I wanted to reach out for help but desired to be alone. I shed perhaps a thousand tears. The front I hide behind was dismantled and there exposed lay the reality that for the rest of my life I will manage a chronic illness.
Getting in the car for two hours and going shopping with my girlfriends is never going to be easy. I am not saying it won't happen, because I know me and I know when I get my fight back I will move heaven and earth to have the life I desire but it will always need careful planning and that is what made me sad yesterday. I say sad. I mean devastated.
All of these terms that I am sure will one day become positives are at the moment huge and daunting. 'Managing' 'Preparing' 'Planning' this is how we will need to live our lives from now. I am not saying my life is over because it isn't. It is just never going to be the same again and right now that feels too big.
I have spent my adult life wishing the best for all the people around me I never considered that it might be my life that was hit by this world moving event.
I have been stood in a desert, the dusty cracked ground beneath my feet, the blistering sun beating on my back and yesterday the rain came. It was a rain storm that for a while I thought would actually drown me and sweep me away but today I can see that hopefully it was a storm sufficient enough to nurture everything around it without doing too much permanent damage.
If I could just get my pain under control. If I could just build up my core muscles to support my body and make me more stable. If I could just get a good nights sleep. If I could build a relationship with the local occupational therapists again. If I could allow myself the time and money to go get regular massages or sound baths. If...if...if. I have been living on ifs and what yesterday made me realise is that unless I turn these 'ifs' into 'whens' I am never going to have the resources to manage this consistently.
I need to start accepting that like it or not this is a part of me and I must stop putting so much energy into proving to myself how much I can do in spite of it and ultimately burning myself out. If I can start working on that true acceptance then all the ifs will turn into whens because I will start to do the things I need to do to empower myself to move forward.
I need to accept that for a while there is going to a be huge mountain of emotion for me to walk over and I need to quit trying to go around the mountain. I have to go over the top. It's ok for this to hurt me. It's ok for me to need the extra support I do from my husband, family and friends. The people who pause for just a second to think how enormous this is and acknowledge it and want to be there for us right now accepting nothing in return, these are the people who I think will be in our lives forever. They will forever have a place in our heart and we will be eternally thankful for them. The ones who think this is all just nothing and it's high time for me to get over. They are not people who will be walking down the road with us in 10 years time.
So life may never be completely carefree and to achieve the sense of being carefree will take a lot of productive pain management and resources. I may always be the mum in the wheelchair or on the mobility scooter but no one will ever love my child more then I do and that will make up for everything I can't do. It will make everything I can do even more precious because only I will ever truly know how much effort I am putting in to maintain a level of normality.
I am starting new medication today that I am told will have some nasty side effects for about 2 weeks but could be the start of kicking this Hypermobility Syndromes butt. There are two goals with this medication. 1. To get me the sleep my body needs to compensate for having to work so much harder then a 'normal' body and help me emotionally deal with being in pain all the time (it is exhausting) and 2. Hopefully over time it will turn my bodies response to pain down a bit and help it respond in a more natural and proportionate way.
It will take a while for the medication to work properly so until then I shall carry on. One foot in front of the other. Baby steps for now.
http://www.youtube.com/watch?v=IqF8qR3N-Og
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