I can hardly believe that this time last week (9.24pm as I write) we had just gone on stage for our album launch gig. This week has flown by in a blur and I'm convinced it is Tuesday or Wednesday!
I am thrilled to have Amelia-Rose home for the whole week (school break! Yahoo!) but I feel a tad under prepared!
I normally make sure I plan lots of things to do for school holidays but so far I have nothing up my sleeve! We were talking at bedtime about what she would like to do and so far we have that she'd like a write a 'proper book', make up a story and do the pictures etc. then she asked if we could laminate it and tie it up with ribbon so the pages don't fall out!
I adore how drawn Amelia-Rose is to English, she loves writing stories, poems and 'songs'. As a little girl I LOVED English as a subject. I've always been drawn to how one can express oneself through the written word. I think if you can develop a real pleasure from writing it can be like a key that unlocks a whole new part of life.
Before I had Amelia-Rose I had started to write children's books. I've still got them all on file and would love to do something with them one day. I should share them with Amelia-Rose this half term. If nothing else I know she'll be honest with me!
I was intending to write about the hospital appointments in London tonight but I am just too tired and have had an awful tummy ache since about 3pm this afternoon. It took me to my panic pain stations earlier where the pain gets so prominent I can't do anything to ease it even just a little. It's such a silly thing to say the pain can scare me sometimes but it does, if I can rationalise the reason for it I can manage even the worst pain but when I don't know why it is happening internally I get very on edge. This stomach pain does not feel like the pains and spasms I experience normally. I suppose that just makes me human... with a fear for the unknown!
Blessings x x
Friday, 14 February 2014
Tuesday, 11 February 2014
We did it!
Big things are happening in my life at the moment and it's an odd sort of situation where I am moving forward yet have this lingering grip of pain holding on for dear life! When I consider what my body is going through at the moment the reality of that is so far from what is going on in the rest of my life it's unclear how to match the two up!
The week before last the local paper did a story featuring the album launch and my illness. It was nerve wracking doing the interview because I so rarely talk openly about the reality of living with Hypermobility Syndrome but I felt I owed it to everyone diagnosed not to down play my symptoms and just be really honest.
The paper did a great job in captivating my general positivity but were also very to the point in writing about the symptoms. I was really pleased with the article. It was a good message.
Then after that Steve and I went off to the local radio to do an interview which will be aired today. They are also going to play a song off the album too. There are no words to describe how wonderfully surreal that feels!! A song I jointly wrote and performed... on the radio? WHAT?
It feels like everything I have 'been through' has been bringing me to this place. I am under no illusions that the struggles are over but I feel like I have enough strength in me now to soldier on.
Gosh that sounds so incredibly cheesy but something happened Friday night during the gig. I feel like I came home. I don't like to focus on the negative things but it's not been the easiest of lives! I've always had this strange sense though that in the end it would all work out, that I had a 'something' to fulfil. I've never felt like what I was going through was by any means the meaning of life. I guess I have always rest assured that things could and would change and retained this sense of 'Clo' that keeps me silly and positive and determined. I still couldn't tell you what the purpose of my life will be (I've never been very good at knowing where I'm going!) but I feel like I am on the right tracks, I believe when the time is right it will be revealed to me. I have to pay attention to what is being said around me and people are buzzing. Something is shifting.
I don't really know if I can put Friday into words, Nor can I ever write truly how much I appreciate the work of everyone involved to make the night happen!
We were able to portray how well we've all gelled in the rehearsals up on stage and from what people have said we knocked it out the park. The response from people has been overwhelming. My sister said 'Tonight you became the person you were always meant to be', another friend commented 'I've never seen anyone so relaxed on stage before'. My parents were beside themselves with pride. It really feels like something special happened Friday. It completely smashed all my expectations of how well it 'may' go!!
I feel like this whole experience has helped me learn to manage my symptoms better. I think I've reached a new level of listening to my body and taking cues from it. I am getting better at putting my body first and when it needs rest I rest. When it seems a soak in the bath will help I get in the bath. I may have finally realised how to live successfully along side it rather then seeing it as his absurd 'thing' that just hurts me all the time!
So symptoms update;
Still being sick if and when I attempt solid food.
Pain in my oesophagus when I swallow, sometimes this even applies to water (ow)
Back ache, oh the back ache!
Thumb on my right hand is really swollen at the minute, I must continue to persevere with the turmeric tea!
The middle finger on my right hand seems to have improved somewhat ,in terms of movement.
Hips, well, they are my hips, how do I describe my hips? Clicking, popping, dislocating and very sore. I've discovered a very hot wheat bag in the groan is helping with the hip pain. Possibly because it's burning hot on the skin so takes my mind off it but hey... it's a break!
I am juicing loads which is having an amazingly positive effect on my fatigue! I am also drinking turmeric tea a few times a day and I must say I do think it's beginning to have an effect on my 'bone' pain. The constant ache in my joints does seem to be more manageable. It's less invasive on my mind.
To look after my voice (which is a muscle after all) I am singing everyday and drinking buckets of lemon and ginger.
In terms of what I put into my body I think I must be the healthiest person I know. I cannot imagine how much worse my symptoms would be if I was inactive in the 'fight' against the syndrome. I don't like the word fight, some day it feels like a fight but I don't want it to be a fight. I want it to be a courtship. Where we politely acknowledge each other but don't dictate each others fate!
Off to London for hospital appointments this week, I normally find it so stressful but instead of going there and back in a day we've decided to go up the day before stay over night and then we don't have to get up at lord knows what time of the morning!
I'm not sure we will learn anything new from these appointments but we'll see!
The week before last the local paper did a story featuring the album launch and my illness. It was nerve wracking doing the interview because I so rarely talk openly about the reality of living with Hypermobility Syndrome but I felt I owed it to everyone diagnosed not to down play my symptoms and just be really honest.
The paper did a great job in captivating my general positivity but were also very to the point in writing about the symptoms. I was really pleased with the article. It was a good message.
Then after that Steve and I went off to the local radio to do an interview which will be aired today. They are also going to play a song off the album too. There are no words to describe how wonderfully surreal that feels!! A song I jointly wrote and performed... on the radio? WHAT?
It feels like everything I have 'been through' has been bringing me to this place. I am under no illusions that the struggles are over but I feel like I have enough strength in me now to soldier on.
Gosh that sounds so incredibly cheesy but something happened Friday night during the gig. I feel like I came home. I don't like to focus on the negative things but it's not been the easiest of lives! I've always had this strange sense though that in the end it would all work out, that I had a 'something' to fulfil. I've never felt like what I was going through was by any means the meaning of life. I guess I have always rest assured that things could and would change and retained this sense of 'Clo' that keeps me silly and positive and determined. I still couldn't tell you what the purpose of my life will be (I've never been very good at knowing where I'm going!) but I feel like I am on the right tracks, I believe when the time is right it will be revealed to me. I have to pay attention to what is being said around me and people are buzzing. Something is shifting.
I don't really know if I can put Friday into words, Nor can I ever write truly how much I appreciate the work of everyone involved to make the night happen!
We were able to portray how well we've all gelled in the rehearsals up on stage and from what people have said we knocked it out the park. The response from people has been overwhelming. My sister said 'Tonight you became the person you were always meant to be', another friend commented 'I've never seen anyone so relaxed on stage before'. My parents were beside themselves with pride. It really feels like something special happened Friday. It completely smashed all my expectations of how well it 'may' go!!
I feel like this whole experience has helped me learn to manage my symptoms better. I think I've reached a new level of listening to my body and taking cues from it. I am getting better at putting my body first and when it needs rest I rest. When it seems a soak in the bath will help I get in the bath. I may have finally realised how to live successfully along side it rather then seeing it as his absurd 'thing' that just hurts me all the time!
So symptoms update;
Still being sick if and when I attempt solid food.
Pain in my oesophagus when I swallow, sometimes this even applies to water (ow)
Back ache, oh the back ache!
Thumb on my right hand is really swollen at the minute, I must continue to persevere with the turmeric tea!
The middle finger on my right hand seems to have improved somewhat ,in terms of movement.
Hips, well, they are my hips, how do I describe my hips? Clicking, popping, dislocating and very sore. I've discovered a very hot wheat bag in the groan is helping with the hip pain. Possibly because it's burning hot on the skin so takes my mind off it but hey... it's a break!
I am juicing loads which is having an amazingly positive effect on my fatigue! I am also drinking turmeric tea a few times a day and I must say I do think it's beginning to have an effect on my 'bone' pain. The constant ache in my joints does seem to be more manageable. It's less invasive on my mind.
To look after my voice (which is a muscle after all) I am singing everyday and drinking buckets of lemon and ginger.
In terms of what I put into my body I think I must be the healthiest person I know. I cannot imagine how much worse my symptoms would be if I was inactive in the 'fight' against the syndrome. I don't like the word fight, some day it feels like a fight but I don't want it to be a fight. I want it to be a courtship. Where we politely acknowledge each other but don't dictate each others fate!
Off to London for hospital appointments this week, I normally find it so stressful but instead of going there and back in a day we've decided to go up the day before stay over night and then we don't have to get up at lord knows what time of the morning!
I'm not sure we will learn anything new from these appointments but we'll see!
Wednesday, 15 January 2014
The day Hello Kitty came to party
So the past 2 weeks have been all about my daughter's fifth birthday party! This year she asked for a Hello Kitty theme and asked that everything was PINK!
Up until about 2 months ago my daughter hasn't liked 'Pink', proudly telling people she is not a 'pinkish' girl so this new pink stage has been a bit of a revelation to us all.
I love birthdays, I always have. When I was a little girl I would stretch my birth'day' as long as I could! Just a day? Oh no! Lets go for the whole weekend!
Something that I am really having to work on is setting myself new realistic physical expectations. I have always been very proud of my make it yourself attitude and it meant for the first three years as a wife and mother our meals were from scratch and my daughter and I made most the gifts that we gave. I loved the lifestyle. Of course, when I became disabled things had to change and it's possibly the thing I struggle with the most. It makes me feel completely inadequate!
My husband now does a lot of the cooking because it is difficult for me to prepare food and I really miss it. I will raise the blood pressure of feminists around the world now but we had a very traditional marriage. I was the home keeper and my husband was the bread winner. I was very fortunate that even before my illness my husband has always been hands on with house work on his days off (helping out where he could) but cooking was always my territory.
I take great pride in cooking nice meals for the people I love. As a little girl I use to plan elaborate menus and invite all of my extended family over for 'dinner parties'. For me cooking is about love, so you can imagine how difficult I have found it to let that go. (This is one of the things we have addressed with the occupational therapists. How to enable me to be able to cook completely independently again. Hoora!!)
Rationally I can say to myself 'All they need is your love and your time' and yet the fact that I can't 'do' as much as I use to is still a very sore wound for me. I am aware of it though which I think is positive and I am working on it. At least I've identified the sore spot!
It's not a great personality trait having your self worth (for want of a better phrase!) caught up in what you can physically do for other people but A; Before the disability I had no idea because I was able to give as much of myself as I wanted! and B; I do know now and it's explained a lot of past experiences to me and I fully intend upon growing as a person knowing this is within me. I guess it's all part of being kind to myself. (See previous blog!)
Urgh, I feel like this is sounding like I am a real downer on myself and it isn't meant to at all! I am not a self loathing person, I just, I feel my best when I am helping someone. I like to give to people and I suppose, what I am trying to explain is that it's only since I have become disabled that I've realised that that want to give to other people all the time is a bit wrapped up with how I see myself. In terms of being a useful human being etc. Man I have gone WAY off subject...
Getting back to the party...
Pre party as I looked at the food I had prepared and the decorations I had bought I simply thought "I haven't done enough" but when I saw how beautiful the hall looked and how happy my daughter was I was able to appreciate my hard work. (And the hard work of others. It wouldn't have been made possible without my amazing family and two friends who actually put all the decorations up for me!)
I also did something that I have never done before. I put myself in my wheelchair. Going in my wheelchair is normally only an option because I simply cannot do what it is I need to do without it (like being out in public in a non mobility scooter friendly place) but on this occasion I decided the best place for me to be was indeed in my wheelchair. Call it self preservation. I knew, if I didn't put my butt in that chair I would have over done it and the only person that pays for me over doing it is me. Well, in a physical sense anyway.
After the party I had a long soak in the bath and when I was reflecting upon the day it occurred to me that it was the first time I had felt comfortable in my wheelchair. Normally I HATE being in my wheelchair. The first time I went out in it I had a panic attack (after 6 years of not having one!) and it near enough broke my heart to see the reflection in shop windows of a woman sat in a wheelchair but here we are, 22 months later and I actually felt like 'me'. I was relaxed and I enjoyed myself. It was a HUGE victory. Huge. And even now a few days on it still feels pretty darn good.
I am so good at putting on the 'I cope with this so well' face but in this case I actually really did! It was such a fun party! I didn't feel like I was putting on a show or a brave face at all. I just genuinely had a blast.
I set up four tables each with a different activity on so the children were spilt into groups and then with an adult helper moved their way around the various activities so that everyone got a turn at everything and we weren't left with children running wildly around the room!
Table one was the toilet roll game! Using toilet roll you make yourself (or a nominated person in your team) an outfit to wear. The children had an absolute BLAST and we will definitely be doing this again! Even the mums couldn't resist getting involved!
Table two was the tray memory game. You place various items on a tray and cover it with a tea towel. You then do a sneaky swipe and remove something from the tray and the children have to guess what it is that is missing. This was another great hit and engaged the children far more then I thought it would! I would say this is a game to reserve for school age children. There were a few pre-schoolers at the party who did enjoy it but I think it was because they were integrated with the older children.
Next stop was the pin the bow on the Hello Kitty which we set up on the wall. I drew her and cut the bow out myself because you can't buy one anywhere but it was worth it. The children loved it and did great at waiting their turn. As they were in groups of 4-5 they didn't have to wait long.
Table three I put out a tray of pens and some cardboard bunting and all the children got to decorate a bunting triangle. My original idea was that I would then string them up and put them up in my daughter's bedroom but most the children wanted to take them home which was absolutely fine. It was nice they had something they were proud of.
Table four was the age old, can't go wrong with it, works every time, biscuit decorating. Icing sugar, various sprinkles, a biscuit and a spoon. Job done. This never fails to delight children!
Pass the parcel is my daughters favourite party game and she asked that it be the first thing we did so I actually prepared two. One for the beginning and one for the end. The first one had a chocolate coin between each layer and the second as little toys that my husband and daughter had bought. For an nice added touch I put them in sweet little cellophane bags that had birthday balloons on so it was almost like they got a little present.
We did party boxes rather then party bags at the end of the party. I prefer boxes because I think they are more likely to be used again and again by the children where as party bags tend to go straight in the bin. We tied a helium balloon to every box so every child left with a party box, a balloon and I also made some biscuits that I put into Hello Kitty food bags. It felt like a great party.
Cake pops without the sticks
Marshmallows dipped in pink crystal sprinkles
Cupcakes
Meringues shaped like a 5
Cones with chocolate coins in
The table
Hello Kitty Bow straws (I stuck the bows on)
Food table
Hall decorations
How to rescue a helium balloon!
We served strawberry milk to drink
Happy faces and bows on the bananas to make them more 'a peeling' ;-)
A few weeks before the party we tried to find a nice party dress but couldn't find one that my daughter really liked and she asked if I could make her a tutu. I used pink and lilac net with a very large pink flower button on the front. For the top half I bought a pink leotard (She also does gym and tap so it will get plenty of use!) and a Hello Kitty iron on patch for the centre! Job done! She also has a hello kitty birthday badge on here!
Blessings x
Up until about 2 months ago my daughter hasn't liked 'Pink', proudly telling people she is not a 'pinkish' girl so this new pink stage has been a bit of a revelation to us all.
I love birthdays, I always have. When I was a little girl I would stretch my birth'day' as long as I could! Just a day? Oh no! Lets go for the whole weekend!
Something that I am really having to work on is setting myself new realistic physical expectations. I have always been very proud of my make it yourself attitude and it meant for the first three years as a wife and mother our meals were from scratch and my daughter and I made most the gifts that we gave. I loved the lifestyle. Of course, when I became disabled things had to change and it's possibly the thing I struggle with the most. It makes me feel completely inadequate!
My husband now does a lot of the cooking because it is difficult for me to prepare food and I really miss it. I will raise the blood pressure of feminists around the world now but we had a very traditional marriage. I was the home keeper and my husband was the bread winner. I was very fortunate that even before my illness my husband has always been hands on with house work on his days off (helping out where he could) but cooking was always my territory.
I take great pride in cooking nice meals for the people I love. As a little girl I use to plan elaborate menus and invite all of my extended family over for 'dinner parties'. For me cooking is about love, so you can imagine how difficult I have found it to let that go. (This is one of the things we have addressed with the occupational therapists. How to enable me to be able to cook completely independently again. Hoora!!)
Rationally I can say to myself 'All they need is your love and your time' and yet the fact that I can't 'do' as much as I use to is still a very sore wound for me. I am aware of it though which I think is positive and I am working on it. At least I've identified the sore spot!
It's not a great personality trait having your self worth (for want of a better phrase!) caught up in what you can physically do for other people but A; Before the disability I had no idea because I was able to give as much of myself as I wanted! and B; I do know now and it's explained a lot of past experiences to me and I fully intend upon growing as a person knowing this is within me. I guess it's all part of being kind to myself. (See previous blog!)
Urgh, I feel like this is sounding like I am a real downer on myself and it isn't meant to at all! I am not a self loathing person, I just, I feel my best when I am helping someone. I like to give to people and I suppose, what I am trying to explain is that it's only since I have become disabled that I've realised that that want to give to other people all the time is a bit wrapped up with how I see myself. In terms of being a useful human being etc. Man I have gone WAY off subject...
Getting back to the party...
Pre party as I looked at the food I had prepared and the decorations I had bought I simply thought "I haven't done enough" but when I saw how beautiful the hall looked and how happy my daughter was I was able to appreciate my hard work. (And the hard work of others. It wouldn't have been made possible without my amazing family and two friends who actually put all the decorations up for me!)
I also did something that I have never done before. I put myself in my wheelchair. Going in my wheelchair is normally only an option because I simply cannot do what it is I need to do without it (like being out in public in a non mobility scooter friendly place) but on this occasion I decided the best place for me to be was indeed in my wheelchair. Call it self preservation. I knew, if I didn't put my butt in that chair I would have over done it and the only person that pays for me over doing it is me. Well, in a physical sense anyway.
After the party I had a long soak in the bath and when I was reflecting upon the day it occurred to me that it was the first time I had felt comfortable in my wheelchair. Normally I HATE being in my wheelchair. The first time I went out in it I had a panic attack (after 6 years of not having one!) and it near enough broke my heart to see the reflection in shop windows of a woman sat in a wheelchair but here we are, 22 months later and I actually felt like 'me'. I was relaxed and I enjoyed myself. It was a HUGE victory. Huge. And even now a few days on it still feels pretty darn good.
I am so good at putting on the 'I cope with this so well' face but in this case I actually really did! It was such a fun party! I didn't feel like I was putting on a show or a brave face at all. I just genuinely had a blast.
I set up four tables each with a different activity on so the children were spilt into groups and then with an adult helper moved their way around the various activities so that everyone got a turn at everything and we weren't left with children running wildly around the room!
Table one was the toilet roll game! Using toilet roll you make yourself (or a nominated person in your team) an outfit to wear. The children had an absolute BLAST and we will definitely be doing this again! Even the mums couldn't resist getting involved!
Table two was the tray memory game. You place various items on a tray and cover it with a tea towel. You then do a sneaky swipe and remove something from the tray and the children have to guess what it is that is missing. This was another great hit and engaged the children far more then I thought it would! I would say this is a game to reserve for school age children. There were a few pre-schoolers at the party who did enjoy it but I think it was because they were integrated with the older children.
Next stop was the pin the bow on the Hello Kitty which we set up on the wall. I drew her and cut the bow out myself because you can't buy one anywhere but it was worth it. The children loved it and did great at waiting their turn. As they were in groups of 4-5 they didn't have to wait long.
Table three I put out a tray of pens and some cardboard bunting and all the children got to decorate a bunting triangle. My original idea was that I would then string them up and put them up in my daughter's bedroom but most the children wanted to take them home which was absolutely fine. It was nice they had something they were proud of.
Table four was the age old, can't go wrong with it, works every time, biscuit decorating. Icing sugar, various sprinkles, a biscuit and a spoon. Job done. This never fails to delight children!
Pass the parcel is my daughters favourite party game and she asked that it be the first thing we did so I actually prepared two. One for the beginning and one for the end. The first one had a chocolate coin between each layer and the second as little toys that my husband and daughter had bought. For an nice added touch I put them in sweet little cellophane bags that had birthday balloons on so it was almost like they got a little present.
We did party boxes rather then party bags at the end of the party. I prefer boxes because I think they are more likely to be used again and again by the children where as party bags tend to go straight in the bin. We tied a helium balloon to every box so every child left with a party box, a balloon and I also made some biscuits that I put into Hello Kitty food bags. It felt like a great party.
I made the topper and was almost finished when I popped into the kitchen...
Just minutes later my daughter came in and said 'Look Mumma I drew on the mouth!'
So, yes she doesn't look like a Hello Kitty topper but she is a beautiful cat that my daughter
helped with!
A few weeks before the party we tried to find a nice party dress but couldn't find one that my daughter really liked and she asked if I could make her a tutu. I used pink and lilac net with a very large pink flower button on the front. For the top half I bought a pink leotard (She also does gym and tap so it will get plenty of use!) and a Hello Kitty iron on patch for the centre! Job done! She also has a hello kitty birthday badge on here!
Blessings x
Monday, 6 January 2014
Stepping into 2014 in style.
BOOM! Now if that isn't the best t-shirt you ever did see I challenge you to show me better!
2014 has descended upon us which means it is now less then 6 weeks until album launch time! Wow! Steve and I have put so much of ourselves into this album I hope people enjoy listening to it as much as we enjoyed making it. On a personal level it has been a bit of a sanity saver for me in the crazy that was 2013.
If you want to learn more about the music collaboration 'Songbird' I am in head on over to www.relaxx.co.uk or www.soundcloud.com/songbird-Unexpected. You can also like us on Facebook at www.facebook.com/unexpectedsongbird or be our friend by searching Song Bird (two words!)
Ok, plug over! As much as I could go on and on about that particular project I shall save that for another day! This is a health/life blog after all!
Update time!
I managed to honour the promise to myself that I would not put myself under lots of pressure for the 'perfect' Christmas but instead have the best Christmas we could have with my health limitations and I honestly think I did it!
The 10 days leading up to Christmas were still earth shattering exhausting but that was because my poor husband had an accident and ended up with his arm in a sling for a week! Our daughter was still at school and buzzing about Christmas coming and oh man it was such a busy week. There were a few crying tired tears! The thing I learned though it that actually in a time of crisis I CAN cope. Physically I paid for it but that was inevitable, the fact is, I learned that I am not as useless in a time of extra physical demand as I thought I would be!
We had a wonderful Christmas and I really felt like we got it 'right'. Good feeling.
The colder weather has bought higher pain levels as it does, but I have taught myself a new word. Capacity. Now I hear you say "But Clo, surely you have known this word most of your life?" and of course I have but I have just recently realised 'Capacity' is a word I like.
It has removed the constant battle between my desire and my capability. For the past 22 months my pain has been the enemy, I have been locked in a battle to not let my pain 'win'. It was to be challenged and never 'allowed' to hold me back. Do you know where this attitude gets you? I'll tell you... no where fast!
The only place that gets you is crying on your bed because once again you lost the battle! (Yeah, so, I don't like admitting that to the world wide web but once again I will say this blog is all about what it is like to live with a chronic illness and, well, that's what it is like sometimes!)
I am now listening to my body more and more and taking her lead. I have not yet mastered this art but by using the word 'Capacity' I am able to rationalise my need for extra physical rest in a way I never have before. Go me!
I have an almost constant dialogue running in my mind. "Do you have the capacity for this? No? Then what about this? Have you got the capacity to do this? Yes?! Wonderful!" etc. I am also holding the consultants words very close to my heart... "Just be really kind to yourself".
I have learned if you live with a chronic illness and you are not kind to yourself not only do you suffer but so do all the people around you who love you and care for you. I am day by day learning to forgive myself and be kind to myself. I cannot offer anything to anyone else if I am laid up in bed!
These are all amazing positive steps and I hope this can truly be the beginning of living with my illness instead of against it! If this is the first time you have read the blog (where have you been?! ha!) and don't know what on earth I am talking about all is revealed here http://www.youtube.com/watch?v=P-AeepZVuZQ
The not so good news is that my stomach has nose dived over the past 3ish weeks. Since June my husband and I have noticed that I am sick a lot more then your average joe but in the past 3 weeks I have been violently sick everyday and 'holding down' maybe one in every 10 meals? I am nibbling when I can and drinking lots of fluids but even that can be ridiculously painful at times!
At the moment the only thing I can do really is keep trying different foods and drinking home made juices. A wonderful friend of mine bought me over a soup maker yesterday (which felt like the kindest thing in the world) so I am keen to use that. You throw all your veg in with some stock, set it to the type of soup you want and leave it in the same way you would a stew in a slow cooker. Here's the best bit though! At a set time within the cooking process it blends it! How awesome is that!
Needless to say I am so hungry! I feel empty in a way I never have before and would be inclined to chew on anything if it stayed still next to me for too long (says the vegetarian) watch out cat!
I live in hope that a week or two with juices and soups will give my tummy a rest and hopefully the muscles will start doing their job again. Lazy beeps! ;-)
Although this new development is far from my idea of fun I have achieved two things;
1. Using my visualisation to help me raise above the frustrations of it all. In my mind I have spent a pretty good chunk of time stood next to a lake in Canada watching my pain float away in the past 3 weeks. How very Zen of me! Haha!
2. Not to panic. Even when the pain has been off the chart I have not reached my panicky pain since the 19th December which in the very least deserves a huge high five! It's not just a step forward it's a hop, skip and a jump forward! (Ironic concept there for a wheelchair user eh! LOL)
So I guess that brings us up to now! It's a funny sort of thing when we hit a celebration like NYE because everyone wishes each other 'health and happiness' at times that can feel a little like rubbing salt in a wound but even that I have managed to put into my own perspective.
Yes my disease is genetic and yes it will likely get worse with age but this is the first year that I have known what condition I am living with and I am keen to learn just exactly how to live with this. I will try everything and anything so that this becomes a part of my life and not my entire life. Chronic illness can consume you and lord knows that is nobodies 'fault' but I believe in my heart that my standard of living can and will improve in the months ahead. In 2014 I will be brave enough to embrace just about every alternative therapy under the sun because, well, for want of a better phrase I deserve it! I deserve health. Whatever my 'healthy' is. I deserve it.
It's our daughter's 5th birthday soon and we're having a party for her next weekend. Watch this space for the party blog!
Be blessed peeps!
Remember, tell the people you love you love them, tell the people you like how much they mean to you and concentrate your time on the people who make you feel good! Life is so precious.
Friday, 20 December 2013
The flour that broke the camels back
Tis the season to be jolly ow ow ow ow owww ow ow ow owwwww
Another busy day after a busy week.
I had a great appointment with the occupational therapist from social services today who assessed me for a stair lift grant. The woman was absolutely wonderful but it was exhausting. I had to tell my whole story and I had to be honest, it is so much easier to put on a brave face!! Being honest when you're in as much pain as I am is exhausting! The superb news is though is that she has assessed that I have a 'critical need' and will be writing in her report that she thinks I need the stair lift.
After the meeting I had to make some mince pies to put in the hampers I do for my family. As I finished and was packing away my entire tub of flour fell out the cupboard. That's 2kg of flour all over my kitchen floor. It didn't just tip in a pile, oh no, it spread across the flour and what did I do? In my sheer frustration and screaming pain I threw the other one and that also tipped out. Well done Clo, great decision! (It's cringe worthy to openly admit such a thing but this is all about an honest account of life with a chronic illness so there you have it!)
So now, there was about 4kg of flour and 2kg of oats all over my kitchen floor! The oats fell out the cupboard just for good measure. I don't get cross very often, it's one of the things I am working on. Allowing myself to be angry about my illness. I am afraid of my own anger and I don't let myself connect to it so the throwing of the flour tub was a bit of a revelation for me! A really messy revelation but one none the less.
I don't know why I am afraid of allowing myself to get angry, I think maybe I see it as a very negative emotion and I am very much a glass half full kind of girl (amazingly!) I don't know, I just find it very difficult.
Anyway, I am working on allowing myself to feel angry and accept it's ok to feel like having this illness is not fair and that that doesn't make me a bad person nor does it mean I'm giving in or being a victim. It's just acknowledging that those emotions are natural and manageable.
I allowed myself a jolly good cry as I cleared it up and put myself to bed. My daughter and husband were out so I decided to take full advantage of a quiet house. This is huge step for me. All week I have felt so much (self induced) pressure to keep all the balls in the air so my husband can just concentrate on getting well, he's been really suffering with his arm injury. It's the first time he's had any sort of injury and I think he is genuinely quite shocked at just how much it hurts and how useless that is making him feel.
Anyone with Hypermobility Syndrome will know how dangerous it is for the body not to rest and today I gave in and collapsed into my bed at 6pm.
I love Christmas time, I love the entire advent season but it is one of the hardest times of year to feel so unwell. I have a deep desire to create every pin I have repinned for the past 12 months and yet my body holds no punches in punishing me for such reckless behaviour!
I have put myself under no pressure to 'over achieve' and to only do what I can but that doesn't take away the sense of loss that I can't do all the things I want to do. There is such an idea of perfection around Christmas and that makes it very tough if you're sick, grieving, out of work etc.
Fatigue is also beeatch this time of year, it's like someone is constantly on your back trying to pull you down and all you want to do is muster up the strength to stay up right!
I am pleased that I made the promise to myself at the beginning of advent not to strive for perfection this year but it's funny how just the extra things I am doing have driven home for me quite how dramatically my life has changed since I became disabled.
That's all I have in me tonight. It's now 10pm and just this short blog has taken me hours because I've had to break from it a few time to get various things done! Mainly washing, detangling and putting up my daughters hair that now reaches beyond her bottom when it's wet! If she tilts her head back it is actually at the back of her knees now!
Sorry this entrance is a rambling one!
Another busy day after a busy week.
I had a great appointment with the occupational therapist from social services today who assessed me for a stair lift grant. The woman was absolutely wonderful but it was exhausting. I had to tell my whole story and I had to be honest, it is so much easier to put on a brave face!! Being honest when you're in as much pain as I am is exhausting! The superb news is though is that she has assessed that I have a 'critical need' and will be writing in her report that she thinks I need the stair lift.
After the meeting I had to make some mince pies to put in the hampers I do for my family. As I finished and was packing away my entire tub of flour fell out the cupboard. That's 2kg of flour all over my kitchen floor. It didn't just tip in a pile, oh no, it spread across the flour and what did I do? In my sheer frustration and screaming pain I threw the other one and that also tipped out. Well done Clo, great decision! (It's cringe worthy to openly admit such a thing but this is all about an honest account of life with a chronic illness so there you have it!)
So now, there was about 4kg of flour and 2kg of oats all over my kitchen floor! The oats fell out the cupboard just for good measure. I don't get cross very often, it's one of the things I am working on. Allowing myself to be angry about my illness. I am afraid of my own anger and I don't let myself connect to it so the throwing of the flour tub was a bit of a revelation for me! A really messy revelation but one none the less.
I don't know why I am afraid of allowing myself to get angry, I think maybe I see it as a very negative emotion and I am very much a glass half full kind of girl (amazingly!) I don't know, I just find it very difficult.
Anyway, I am working on allowing myself to feel angry and accept it's ok to feel like having this illness is not fair and that that doesn't make me a bad person nor does it mean I'm giving in or being a victim. It's just acknowledging that those emotions are natural and manageable.
I allowed myself a jolly good cry as I cleared it up and put myself to bed. My daughter and husband were out so I decided to take full advantage of a quiet house. This is huge step for me. All week I have felt so much (self induced) pressure to keep all the balls in the air so my husband can just concentrate on getting well, he's been really suffering with his arm injury. It's the first time he's had any sort of injury and I think he is genuinely quite shocked at just how much it hurts and how useless that is making him feel.
Anyone with Hypermobility Syndrome will know how dangerous it is for the body not to rest and today I gave in and collapsed into my bed at 6pm.
I love Christmas time, I love the entire advent season but it is one of the hardest times of year to feel so unwell. I have a deep desire to create every pin I have repinned for the past 12 months and yet my body holds no punches in punishing me for such reckless behaviour!
I have put myself under no pressure to 'over achieve' and to only do what I can but that doesn't take away the sense of loss that I can't do all the things I want to do. There is such an idea of perfection around Christmas and that makes it very tough if you're sick, grieving, out of work etc.
Fatigue is also beeatch this time of year, it's like someone is constantly on your back trying to pull you down and all you want to do is muster up the strength to stay up right!
I am pleased that I made the promise to myself at the beginning of advent not to strive for perfection this year but it's funny how just the extra things I am doing have driven home for me quite how dramatically my life has changed since I became disabled.
That's all I have in me tonight. It's now 10pm and just this short blog has taken me hours because I've had to break from it a few time to get various things done! Mainly washing, detangling and putting up my daughters hair that now reaches beyond her bottom when it's wet! If she tilts her head back it is actually at the back of her knees now!
Sorry this entrance is a rambling one!
Tuesday, 17 December 2013
Can I help you?
AAAAAAAAGGGGGGGGGGHHHHHHHHHHH.... and breathe!
Dear Lord, what a bonkers few weeks!
The good news is that I have kept my promise to myself not to get carried away with the Christmas rush, I have applied exactly 0 pressure on myself and I am happy to achieve what I achieve when I achieve it and if something doesn't get done then so be it.
I had a good (albeit long!) trip to London for physiotherapy and hand therapy last week and I have been doing more filming and editing for my new YouTube channel which I am enjoying. It still feels a little overwhelming but it is a good overwhelming.
It all fell apart though when my husband hurt his arm and became virtually incapacitated! My gorgeous man that keeps us all going and ticking over has ground to a halt and I have had to spring into action myself! Any notion of this all important 'pacing' I here is so important in keeping my illness under control has flown out the window and a headless chicken does a better job of looking calm and together then I am at the minute!
Sunday was the most stressful day so far made no better by my mobility scooter breaking down... in the dark... in the pouring rain... on a zebra crossing!!
As I frantically tried to fix the damn thing the drivers (and passengers!) of the two cars that had stopped to let me pass over the zebra crossing just stared on in frustrated disbelief as this young disabled woman tried to sort herself out. Cars joined the queue and naturally I wanted the road to swallow me whole but more then, much more then that I NEEDED someone to help. As I took the battery on and off the scooter was it not painfully obvious that I had broken down?
Oh what I wouldn't have done to be able to get off that blasted thing and push it across the road to safety! Alas, if I could do that though I wouldn't need it now would I?
Eventually another car joined the queue and thank God for the two young lads that got out and offered to help! Never have I needed to hear those four beautiful words so much in my life... "Can I help you?"
The whole ordeal got me thinking, why is the idea of offering help to a stranger, disabled or not so terrifying? I myself have been guilty in the past of slightly hesitating to offer a stranger help when I thought they might need it but why? Do I fear offending them?
Is there a fear in all of us that by offering help to another we make ourselves vulnerable or is it that modern life demands so much of our attention we merely question if we have the time?
Perhaps we are all at capacity? Full to the very limit of what we can offer the world. I'd like to think though that somewhere in us all is the reserve that we can fall onto if we see someone in a potentially dangerous situation (I don't know, say like, on a mobility scooter, in the rain, and the dark...alone stranded on a road) We're not talking intervening in an armed robbery here lets be clear about that. I am talking about reaching something from a top self for someone who is vertically challenged (I once dared to call a friend of 5"2 'short' and was instantly corrected) or the classic helping the old lady cross the road.
Many a times I have seen a flash of sheer terror in someone's eye if one of my crutches falls to the floor "Oh god" I hear them think "Does she expect me to pick that up?" Of course the answer is no, I would never expect someone to pick it up but it's always a nice surprise when they do.
On the flip side to the 'stranded on the zebra crossing' incident I experienced on the weekend a few weeks ago I had been in the grocers buying my weekly supply of fruit of veg when the lady on the till (who I know well after years of shopping there) offered to carry it out to my mobility scooter for me (very kind) I progressed out the shop as there were a few people who needed serving and I had done all the standing I could cope with for a while when the old chap who had been behind me in the queue appeared a few minutes later with my shopping.
I thanked him and reached out to take the shopping and he said he insisted on carrying it home for me! He had apparently 'seen me around' and knew I only lived a short distance from his house. Now whoever said chivalry is dead has clearly not met this man and it made me a bit sad that I was so taken a back by his kindness I felt almost uncomfortable! Embarrassed by his willingness to go out of his way (literally, I actually live further then his house, he doesn't pass it to go home his house comes first) for little old me!
We actually had a lovely chat on the way home, I learned both he and his wife had been retired for some years now and were very proud grandparents with a great grandbaby on the way. Even dropping the shopping off in garden was no good for this chap, he walked it right up to the back door and put it in my kitchen.
As I sat in the pouring rain Sunday willing my scooter to move I would have done anything to see that old chaps face! After several minutes of 'Please God let this be over' I had different heroes of course, this time in the form of the two young men but what about all the other people in all the other cars? I wonder what they thought the outcome was going to be? Get out, get wet and be verbally abused by a disabled woman for DARING to offer help?
It may take an enormous amount of courage to offer someone help but I implore you, this festive season and the other 11 months of the year be brave, make a stand for chivalry and mutter those four all important words... Can I help you?
Dear Lord, what a bonkers few weeks!
The good news is that I have kept my promise to myself not to get carried away with the Christmas rush, I have applied exactly 0 pressure on myself and I am happy to achieve what I achieve when I achieve it and if something doesn't get done then so be it.
I had a good (albeit long!) trip to London for physiotherapy and hand therapy last week and I have been doing more filming and editing for my new YouTube channel which I am enjoying. It still feels a little overwhelming but it is a good overwhelming.
It all fell apart though when my husband hurt his arm and became virtually incapacitated! My gorgeous man that keeps us all going and ticking over has ground to a halt and I have had to spring into action myself! Any notion of this all important 'pacing' I here is so important in keeping my illness under control has flown out the window and a headless chicken does a better job of looking calm and together then I am at the minute!
Sunday was the most stressful day so far made no better by my mobility scooter breaking down... in the dark... in the pouring rain... on a zebra crossing!!
As I frantically tried to fix the damn thing the drivers (and passengers!) of the two cars that had stopped to let me pass over the zebra crossing just stared on in frustrated disbelief as this young disabled woman tried to sort herself out. Cars joined the queue and naturally I wanted the road to swallow me whole but more then, much more then that I NEEDED someone to help. As I took the battery on and off the scooter was it not painfully obvious that I had broken down?
Oh what I wouldn't have done to be able to get off that blasted thing and push it across the road to safety! Alas, if I could do that though I wouldn't need it now would I?
Eventually another car joined the queue and thank God for the two young lads that got out and offered to help! Never have I needed to hear those four beautiful words so much in my life... "Can I help you?"
The whole ordeal got me thinking, why is the idea of offering help to a stranger, disabled or not so terrifying? I myself have been guilty in the past of slightly hesitating to offer a stranger help when I thought they might need it but why? Do I fear offending them?
Is there a fear in all of us that by offering help to another we make ourselves vulnerable or is it that modern life demands so much of our attention we merely question if we have the time?
Perhaps we are all at capacity? Full to the very limit of what we can offer the world. I'd like to think though that somewhere in us all is the reserve that we can fall onto if we see someone in a potentially dangerous situation (I don't know, say like, on a mobility scooter, in the rain, and the dark...alone stranded on a road) We're not talking intervening in an armed robbery here lets be clear about that. I am talking about reaching something from a top self for someone who is vertically challenged (I once dared to call a friend of 5"2 'short' and was instantly corrected) or the classic helping the old lady cross the road.
Many a times I have seen a flash of sheer terror in someone's eye if one of my crutches falls to the floor "Oh god" I hear them think "Does she expect me to pick that up?" Of course the answer is no, I would never expect someone to pick it up but it's always a nice surprise when they do.
On the flip side to the 'stranded on the zebra crossing' incident I experienced on the weekend a few weeks ago I had been in the grocers buying my weekly supply of fruit of veg when the lady on the till (who I know well after years of shopping there) offered to carry it out to my mobility scooter for me (very kind) I progressed out the shop as there were a few people who needed serving and I had done all the standing I could cope with for a while when the old chap who had been behind me in the queue appeared a few minutes later with my shopping.
I thanked him and reached out to take the shopping and he said he insisted on carrying it home for me! He had apparently 'seen me around' and knew I only lived a short distance from his house. Now whoever said chivalry is dead has clearly not met this man and it made me a bit sad that I was so taken a back by his kindness I felt almost uncomfortable! Embarrassed by his willingness to go out of his way (literally, I actually live further then his house, he doesn't pass it to go home his house comes first) for little old me!
We actually had a lovely chat on the way home, I learned both he and his wife had been retired for some years now and were very proud grandparents with a great grandbaby on the way. Even dropping the shopping off in garden was no good for this chap, he walked it right up to the back door and put it in my kitchen.
As I sat in the pouring rain Sunday willing my scooter to move I would have done anything to see that old chaps face! After several minutes of 'Please God let this be over' I had different heroes of course, this time in the form of the two young men but what about all the other people in all the other cars? I wonder what they thought the outcome was going to be? Get out, get wet and be verbally abused by a disabled woman for DARING to offer help?
It may take an enormous amount of courage to offer someone help but I implore you, this festive season and the other 11 months of the year be brave, make a stand for chivalry and mutter those four all important words... Can I help you?
Saturday, 7 December 2013
Fever!
That's the actual raging temperature rather then the classic song!
Man I am sick.
I went to bed Thursday night with a bit of a sore throat but woke up within a few hours and felt like I'd swallowed a packet of razor blades! My head was pounding and it wasn't long before I started being sick, shivering, sweating and feeling generally just really disorientated.
Tony rung the Dr out because there's no way I could have made it down the stairs and then sit in a waiting room. I don't really remember much about his visit and I am pretty sure I fell asleep before he left... whoops! That's a tad embarrassing! I've been put on two antibiotics in the hope that it will whip this infections butt and although I am less light sensitive today then I was yesterday this is definitely more then enough screen time. Retreating back under the duvet. Just sitting up in bed doing this has made my arms hurt.
Man I am sick.
I went to bed Thursday night with a bit of a sore throat but woke up within a few hours and felt like I'd swallowed a packet of razor blades! My head was pounding and it wasn't long before I started being sick, shivering, sweating and feeling generally just really disorientated.
Tony rung the Dr out because there's no way I could have made it down the stairs and then sit in a waiting room. I don't really remember much about his visit and I am pretty sure I fell asleep before he left... whoops! That's a tad embarrassing! I've been put on two antibiotics in the hope that it will whip this infections butt and although I am less light sensitive today then I was yesterday this is definitely more then enough screen time. Retreating back under the duvet. Just sitting up in bed doing this has made my arms hurt.
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