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" 

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

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?"
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?

 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

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!


 
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


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)
  • 1a physical or mental condition that limits a person’s movements, senses, or activities:children with severe physical disabilities [mass noun]:differing types of disability
  • 2a disadvantage or handicap, especially one imposed or recognized by the law:the plaintiff was under a disability
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