Surgery update

Oooooookay people, we are on our way. Holy Moly this is actually going to happen. I am going to get a major organ taken out. There is a sentence I didn't think I would say. 

When I had my ostomy surgery last year I always knew that the colon had to go and I knew the longer I had it still in tact the more the symptoms would increase and the more uncomfortable and poorly I would get. I felt so chipper after my surgery though all those symptoms felt a long way off. When I had to ostomy surgery my surgeon tried to empty the enormous amount of, well, you know what but he wasn't able to meaning I am quite literally full of, erm, you know what and it's been in there for over a year now. Gross I know. 

In all honesty when I went to see my surgeon back in January he wanted to book me in for March but I was still deeply in shock about the last surgery without even knowing I was in shock. I thought I was doing great and just wasn't ready to think about more surgery. It wasn't until I spent mothering sunday afternoon on the bathroom floor crying, well, sobbing that I realised for the first time something was really wrong. 

I guess admitting you have a problem is the first and hardest step and I am now waiting for counselling but Tony and I talk things through more then we did before. 

I wish now that I had taken that first date (he actually offered me 3 in that appointment. I know I have bought this on myself but I wasn't even two months post op then and it all felt a bit too much) but I didn't and now it's my turn to live with the fallout. The symptoms are pretty awful to be honest. First there is the fact I am solid food intolerant again, then there's the horrendous spasms that will only ease if I sit on the toilet but by sitting on the toilet it triggers terrible back pain and pins and needles like you wouldn't believe in my legs!

Following on from those three symptoms there's the constant nausea that makes me feel like I have done a loop dee loop a thousand times. I also get headaches like I have never experienced in my life. Laying down in a dark room does nothing to touch these bad boys! 

I suppose the most embarrassing would be the raging fevers that strike at any time. I can be listening to a child read at school (where I go in if I am well enough for an afternoon or two a week) and from nowhere be sweating buckets. I have had to start carrying a hanky with me because if I don't dab my forehead it will literally drip down my nose!! 

 

It's also causing my joint pain to go crackers. I never knew the colon could be responsible for so much. Certainly not an increase in joint pain but indeed it does. (thanks to the NHS website for that nugget of information) I wake many days and feel like I have the flu. It really is pretty rotten. I talk with Tony about everything but I haven't really got anyone else to talk to. I don't want to upset my family, they have already been through so much with me that constantly complaining about my new rack of symptoms isn't going to help anybody else. 

I think generally people simply don't know how ill I am. Obviously apart from my family no one else sees the illness. It's just there, a part of my life that is hidden below foundation, good blusher and a dollop of mascara and of course a great big smile. 

My doctor explained to me that he is going to organise a nurse to come out to the house to show me how to use a disposable catheter as I've lost control of my bladder. (I know right, good times!) Possibly it's because of my colon but in a nutshell my bladder has over stretched which means it holds way too much liquid (which is exactly what happened to my colon and caused it to eventually fail) I use to be able to push down on my stomach to release the floods but now even that doesn't work very often meaning I am getting more and more and more uncomfortable and have to visit the bathroom every 30 minutes or so in a desperate bid to release it but to no avail.

So as you can see the colon has to go! I'm not sad about having to have a bag for the rest of my life but the idea of the operation itself, it's always nevre wracking going for surgery but this one feels bigger then the others. 

There is no way we could afford to have it done privately which would make me feel so much more relaxed about the wrong thing but the surgeon has said if we could afford it then he would be happy to do the surgery in the NHS hospital and then have me transferred to the private hospital for the recovery. I have had nothing but traumatic experiences with my local hospital. They are so stretched for good nursing staff that if you go in as a disabled patient or have complex medical needs on top of the reason you are in hospital they just cannot cope with it. 

The private hospital was just amazing when I had my last surgery, on top of having my own room Tony was allowed to stay with me day or night if I needed him and when I started to get very unwell with the infection the staff were 100% on top of it. They also really took in how much pain I was in without brushing it aside. When I've complained of pain in the past in NHS hospitals I've been told either it's in my mind (totally not true) or that there is nothing they can do and then ignored me and quite literally pulled the curtain around. I've also been passed a bloody tissue from under my bed and been told to put it in the bin myself when I pointed out it wasn't actually my bloody tissue. I've slept in bedding with stains and holes in and been left without water when Tony wasn't around to fill up my jug. I've never had problems with doctors or hospitals but I am terrified of staying in an NHS hospital after this op. The ill treatment of patients is terrible and I don't want to get an infection like last time and not come through it this time because it isn't picked up in time or taken seriously. I am sure this all sounds perfectly ridiculous to most but for me it's all about peace of mind and being in the best possible surroundings so I can make a full recovery as quickly as possible. 

Like I say, the colon has to go. I need to take a deep breath and put it in God's hands. Everything will work out. 

I hope!     

If you would like to donate to our gofundme page created by a friend of our family please click the link and it will take you directly to our page.  http://www.gofundme.com/foroursongbird 

Where we are...

So we're three weeks into the holidays and we are having the best time. I must admit I was worried I was setting myself up for disappointment. I had so much I wanted to do with Amelia-Rose during the holidays but wasn't sure if I would ever be well enough to do it all!

So far so good though! I must admit I can't say I am doing a great job at pacing myself but I am trying to learn! I seem to be in that place where I go go go go go and then I crash which is something I must 'un learn', at least I am aware of it though and am trying to do something about it!

I am finding the only time I have to sit and write is when I am absolutely exhausted (like now) which sort of sucks but I do write when I can! I have an article that I have to edit and I need a good chunk of time do it but finding that time (again when I have the energy) is near on impossible!

My Youtube channel is getting some great feedback which is incredible. I never expected it to be so well received and have been blown away by people's honesty if they leave a comment or send me a message! It's amazing how when you're really deeply honest people feel content to respond with honesty.

It's a really scary thing to be honest and put yourself 'out there' and I was terrified at the idea of making the step from blogger to vlogger but I couldn't get rid of this feeling that it was something I was meant to do. (Don't you just hate that feeling ;-) It's like a feeling of "No God!! Not me! Not now! Get someone else to do it! Ha! Obviously you might not get that if you don't believe in God though!)

Anywho, I have been filming and editing daily vlogs which I must admit I have grown to love. It is such an amazing way to record our lives because Lord knows how bad my memory is now! I love sitting and watching all the footage I recorded that day. I actually wish we had been doing it for years! I generally try to edit it into a film of 15 minutes or less for the sake of YouTube but I have all of this extra amazing footage 'just for us'.

I am digging deep and trying to 'be brave' in a way that I am normally rubbish at. In terms of doctors, procedures without sedation, hospital appointments and operations I generally think I am pretty darn brave but when it comes to putting myself sort of forward for stuff I am RUBBISH at 'being brave'. Being a singer and performer you may not believe that but honestly it's true.

The other day I happened across an amazing website that sells eco friendly and vegan make up. I've managed to find eye shadows etc but have struggled to find companies that sell 'the whole face' make up range, especially really nice bronzers and blushers. I browsed through the website and fell in love with it.

I thought how awesome it would be to review the products on my channel and decided to email the contact email and ask if I could. I guess I have a fear of rejection so doing things like that take a lot of courage for me but I went ahead and did it anyway. It turns out it was well worth it because I got the sweetest email back and they not only offered me an amazing discount but they also said that if I did review them they would also offer the readers of my blog and my YouTube channel viewers a 20% discount with a special code generated just for us!!

I ordered the make up at about 1am Thursday morning and they arrived Friday morning and I absolutely love them! I am going to write a proper review and film a tutorial and review with them to go along with the videos I made of my opening the package. I was so excited it was ridiculous! Honestly the silliest things make me excited!

The other 'brave' thing I did recently was to get in touch with a fellow YouTuber who I have been watching for a while. Her channel is called (and indeed she is called) dearmamasal and she VLOGS on her way to work everyday. The camera is set up on her dashboard and she talks about, well, life really!

I am a great believer in affirming people and wanted to message her to say 'good job' but I felt a bit shy! I eventually went ahead and did it anyway and again I got the sweetest email back. Not only that though she also shared a few of my videos with her viewers and we've exchanged message pretty much every other day or so since. I think she is one of the most like minded people that I have come across recently. Once again my 'being brave' was rewarded although this time with a new friend.

It's amazing what you get back if you put yourself out there.

I am deeply sorry but I am going to have to stop here and not go back and check/edit what I have written. I have the most awful headache and its making me feel quite sick. I really wanted to give you all a full update but I am going to have to stop writing and lay down in the dark. It's only 9.30 but because it's overcast and rainy its already dark outside.

Sorry for any spelling, grammar or just general 'that doesn't make sense' mistakes.

Blessings

C x x

http://youtu.be/2Wa_AviZvGQ (Check out the VLOG here!)

A month on...

Urgh, I am not in the best of places. It's been a  month now since I found myself in the back of an ambulance on the way to hospital. Although I knew my health had been going down hill for a while I don't think I was really in tuned with how bad it had gotten. Like I could see the truck for miles heading towards me but I didn't get out the way, I just stood there watching but then was surprised when it struck.

I have been in shock I think, and still very much am. I am terrified of what lies ahead. It's a fear that feels incredibly raw at the minute and I need to share and give over to God. It's too big for me to handle alone. Jeez what the jeff just happened? It's funny how it's hitting me now after a few weeks of 'coping' so well!

I had an experience a few days after I was home from hospital, excuse me if I have already written about it, I don't think I have... My husband had nipped into work (to keep them in the loop about what is going on at home) and my daughter and I were home alone.

When he got in Amelia-Rose was going to go in the bath and I suggested that we run a bath and see how high we could get the bubbles as a surprise for Daddy when he got home. I stood up and I still don't fully understand what happened but I lost my vision, completely and it felt like my arms and legs were sort of thrashing, I could feel myself going and I shouted 'NO' just before I fell.

I heard my crutches hit the floor after me in what sounded like slow motion and I could hear Amelia-Rose screaming 'Mumma, mumma' Tony (who had fortunately just got home) ran up the stairs by which time my vision was back and I remember him doing a sort of goalie dance, he didn't know which one of his girls to tend to first. He said to me 'Are you all in' to which I replied 'Yes' (by which he meant had any of my limbs dislocated) and he went to Amelia-Rose, she had hidden under the pillow and was still screaming for me, he tried to comfort her but she was having none of it, she wouldn't come out from under the pillow. As petrified as I was I tried to soothe her and tell her I was ok and that it was all over.

Amelia-Rose and I were talking later and she told me two things 1 "You shouted so loud I was so scared you shouted at me" and 2 "I didn't want to see Mummy get hurt" The thing is I did shout like I meant it, like I was shouting NO... I am not ready to go yet. I honestly thought I was going to die. Doesn't that sound dramatic but it's true. I really did. I felt like that was it, I was going and I remember thinking in those seconds 'God I don't want Amelia-Rose to see me die' and 'I am not ready yet' and I shouted, with everything in me 'NO'.

I think the force of that no did scare Amelia-Rose (mainly because we don't ever really shout) and I feel bad for that but maybe one day in years and years and years I will tell her about the time I thought I was going to die and she'll remember how I shouted no with such conviction and she'll know it was because I wasn't ready to leave her. I am not scared of dying, really, but I am not ready to go. I'm not done yet.

I had a really crap 'brain fog' day yesterday and it made me really tearful this morning, everyone keeps telling me it is good to get it out, to let go of it.

It's funny I can't get beyond this memory of when we moved to Stanton, I was what 12? I remember feeling so full of excitement and hope like the new house was such a wonderful place to be. It was the beginning. I don't know why I am stuck there in my thoughts but I very much am.

The other thing I cannot get over is my immense feeling that I am being called to Canada. Like I NEED to go there. Don't ask me why, but again, I cannot get over it. I can't suppress it. It's no secret that I have always loved Canada, it is my happiest of places. When we use to visit oh man would I cry on the way home, and I would sulk for weeks inside afterwards! It was the place I felt so at ease. Maybe that is why? It's been a pretty traumatic few weeks, maybe I am being drawn back to this place because it is where I have found great peace in the past? The knowledge that I can't go is making me really sad.

I've got two appointments in Poole hospital next Monday, and then appointments in London the following week. I am not sure I am well enough to travel to London but Tony really thinks we should go. One of them is to go and see a new consultant that I have been waiting to see for what feels like forever. It will be a really long time before I can see him again. I just don't know if Amelia-Rose is ready to be left so soon?

I've been praying for Amelia-Rose this week and tonight has been the first time for a long long time that I actually prayed with her.. out loud. She was so restless last night, we were talking about it at bedtime and she said she doesn't remember crying a lot last night but she 'knows she doesn't like bad dreams.' I spontaneously asked her if she wanted me to pray for her and she said yes and so I did, I put my hand on her head and prayed out loud for her. It was good.

I have started organising an awareness event in May as may is Hypermobility Syndrome and Ehlers Danlos syndrome awareness month.

I have got in touch with musician friends and am hoping to do a coffee morning but with great music and hopefully some craft stalls.

I am also working on a project called 'This is what Hypermobility syndrome looks like' My goal is to help people recognise that this is fundamentally an invisible disease. I have asked for accounts of what living with the disease is like to contrast with how 'normal' the photos look. I am hoping it will be a really powerful display. One I will also showcase on my website after the event. I feel so passionate about spreading the word about this disease. To raise its profile so that hopefully future generations don't have to go through everything current sufferers do.

 I am part of an online support group and it amazes me when I read so many posts from other people that I could have so easily written myself. It is so affirming for everything I encounter. Sometimes the physical symptoms can be so broad and random you genuinely start to wonder if they really are there. I log on to the support group and as I read think 'Yup, it's not just me'. That feeling is priceless but wouldn't it be amazing if it wasn't just online. If more 'well' people were able to sympathise because they knew what the disease was. You weren't just met with a glazed stare when you spoke about it. Obviously I don't begrudge people for the stare! I'd never heard of it but I want to change that!

I believe I am in for a rough for days as I am getting the 'monthly grumbles' in my tummy, they keep gripping me, reminding me of what is to come. I'm not looking forward to it I must admit! Last month was actually bearable but then again I was hooked up to a morphine pump! I WISH you could be prescribed gas and air at home. Just to have something to get me through the contractions. I guess there must be a reason that they don't but man it would help!

I've really rambled on today haven't I!

Blessed be x

Mindful mummy; Mindful daughter

I have been thinking today about what to write in my blog. A few things have crossed my mind; How much I miss food and what it's like to live without it; My website that I am building how I am trying to centralise the various creative things going on in my life; The frustration that I feel because, as of yet, my body still shows no sign of improvement, but then a wonderful thing happened. I decided today was the day I was going to start teaching my daughter mindfulness.

Amelia-Rose coped amazingly well the first week I was in hospital, she blew us all away actually. The second week she started to struggle although she still did a great job. Since I've been home though I think it has all caught up with her. In the same way it has caught up with my parents, my sister and my husband. It's funny how they all show it in such different ways. In ways that reflect our various relationships.

My husband is treating me like a dandelion, if there is the slightest breeze I think he's afraid I will blow away in the wind. I have always felt like he is my protector but now more then ever. I really do love that man.

Amelia-Rose though, when I first came home as you would expect she was all over me. It was cuddles and kisses all the way. But as the days have gone on and she is realising I am not better then when I was in hospital (bar my pain being under control but she was protected from all of that anyway) I've seen a confusion in her and heard a few questions for Daddy 'Why doesn't mummy cook my dinner anymore?' etc I have decided from tomorrow although I will be wise with rest I am getting up, getting dressed and doing my make up. No doubt I will then be told how great I look although I feel like cr*p but maybe it is time to put the mask back on.

Anyway back to the point in hand. Today Amelia-Rose went out with a friend and wasn't herself, she refused to play with her friend and wouldn't take instruction from my friend. That isn't normal behaviour at all for Amelia-Rose, especially not to take instruction from an adult.

I chose tonight to be the night I would introduce her to mindfulness. I ordered a book whilst I was in hospital called 'Sitting still like a frog'. It's a book and CD designed to introduce children to mindfulness, we sat on my bed together and I explained that we were going to listen to a cd and do what it told us, I told her it would make us feel nice and calm and what we were going to do was called being mindful.

The first track came on and we both closed our eyes (it was a choice, she didn't have to close her eyes but I guess she took my lead) as the track continued I reached out for her hand and she responded by placing her hand in my hand. We fell deeper into relaxation and as the track told us to put our hand on our tummy I peaked out the corner of my eye to see she was indeed putting her other hand on her tummy.


The track finished and we came back into the now, Amelia-Rose asked if we could do another and so we did. That finished and she looked at the track names on the laptop 'Mummy, can we do sleep tight?' and when we'd done it once she asked for it again! This time she snuggled down, asked me to put my hand on her back and she fell asleep!

To hold her hand as she experienced this wonderful feeling for the first time was delightful. I was on a real high. I feel like we have found yet another way to grow together as she herself grows away from needing me in a practical way so much. I see it as part of my role as her mother to learn myself how to step back as she steps forwards but to not be so far back that I'm not there when she needs me. My role shifts and changes and she herself shifts and changes. Sometimes we will move forward for months and sometime we take a few steps back.

Amelia-Rose reverted to co-sleeping months ago then when she got a Hello Kitty blow up bed for Christmas she started sleeping on that on our bedroom floor then suddenly Tuesday she announced she wanted to move back into her own bed in her own bedroom.

I'd always said to Tony when she was ready to move back into her own space she would but it still sort of took me by surprise (in a good way) Tonight Tony lifted her back into her own bed. At 12.30 there came a small voice 'Daddy' Tony went in and they had a small chat before she went back to sleep, she woke again at 2.45am and was completely calm as she was the first time she woke up. I wasn't asleep anyway so I shared a story with her and she asked for the 'Sleep tight' meditation and fell back to sleep!

I need to explain how HUGE this is for us. This is the first time EVER Amelia-Rose has woken up calm in the night. We have always had to deal with night terrors and nightmares (two very different things) or just a crying frustrated many times inconsolable baby/child. This calmness that surrounded Amelia-Rose when she woke in the night was wonderful. I really hope this enthusiasm for meditation continues. I think it gave her a great deal of calm in what has been a very un calm 3 weeks. I feel like I have found a way to help her feel centred when everything is all over the place.

An apology to the universe !

A weird thing happened today.

We were making our way back to waterloo to head home after having a really nice stay in London. It is no lie that I find going to London for all the hospital appointments really stressful. It's not so much once we're there but I hate leaving Amelia-Rose and how disruptive it is to our family life. Travelling also takes a real toll on my body.

This time though we took Amelia-Rose with us! Work on the train line forced us to stay another night which originally I was resenting (costing us another £164 in hotel fees!) but we have had a nice family break away and going to hospital was a mere blip on the radar. The weather was beautiful too!

Anyway, I digress. On the way back up to the station we passed a woman in a wheelchair who was self propelling (insider speak for making herself go) and I gave her my best stranger beamy smile and she looked at me and completely froze me out! Actually, she looked really annoyed that I had smiled at her.

Now I am a beamy smile at a stranger kind a gal, I don't think it costs a thing to smile at someone and for some reason I just assumed this woman would smile back. But why? I don't expect 'able bodied' strangers to smile back, although of course it's always a pleasure when they do but I honestly thought this woman would automatically smile back. It didn't actually occur to me that she wouldn't... until she didn't.

Before we had our daughter my husband and I would go for long bike rides on beautiful days and I always loved the 'biker nod'. It's an unwritten rule amongst bikers that when you pass each other you nod. I just always thought it was very cool.

When this woman didn't smile back, in my head I got all 'Oh charmed I'm sure, nice, really nice' which I would never do if an up right stranger didn't smile back!

I was thinking about the whole scenario on the way home. It really bothered me how I reacted to this woman not smiling. I think there is a part of me that has this ideological vision of seeing someone else in a wheelchair and us sharing that all knowing smile and nod. Just connecting because we both 'get it'.

Unless you've had to be in a wheelchair for an extended period of time or have the knowledge you will be in that chair either permanently or when you go out for the rest of your life it's very difficult to truly grasp that concept. To a good 90% of the population if you are in a wheelchair you are invisible. To the people who see you many often have a true sympathy in their eyes. It comes from a place of compassion but how i would adore to not conjure that emotion in someone!

I wanted this woman to smile back. I think I almost needed her to smile back? Then it dawned on me that I was doing exactly what I don't like having done! I didn't pause for a minute, or even a second to consider how her day was going. I saw a woman who looked well in herself but was in a wheelchair.  I didn't think about how many people had walked across her path or looked down on her. I didn't consider that she was in pain, felt awful or may have had a rough night.

It was really silly of me and I am sorry for it. I put negative thoughts out there in the universe about this woman and that wasn't really fair! Needless to say I take them all back. Or rather I want to replace them with good ones!

The past three mornings we have had the breakfast buffet at the hotel, when we're in that situation I always prefer to propel myself in my chair, I am increasingly beginning to do it out in the street too as my confidence being in the chair grows.

A few times it has dawned on me that I am different to everyone now. Not in a negative way just in a different way. I think this is all part of my own personal acceptance of my situation.  I think my want for this woman to smile at me came from a want to find a place in the 'disabled community' or even to find it! It's bizarre because I don't want people to see me as different but I am definitely beginning to accept that, yeah, I am different.

I am learning about my physical boundaries and figuring out who I am within those. I am understanding that I can still be 'me' within those boundaries but that I am not the me I was 2 years ago. In a want not to label myself as able or disable I have perhaps denied myself moving along the road. I have maybe trapped myself in a stale mate? Clearly I am still not exactly sure what this is all about otherwise I could be more decisive in my writing but I feel like something in me is changing. That maybe I am beginning to identify that indeed this is all part of my identity.

Hospital appointments and hormones.

I've been trying to write this update for a few days now and failing miserably!

Here's the problem I have faced. I have been trying to dress up the last week into something that it hasn't been and because of that I've apparently been stripped of all my abilities to string a sentence together.

So, here it is.

The last few days have SUCKED. No silver lining, no brave face. They have SUCKED. There comes a time when rationality flies out the window and all you are left with is irrational emotion. There, I put it out there into the world. I, the lady who can create a positive out of just about any negative ran out of puff and just wallowed. I let myself feel every sucky feeling that my emotions had to throw at me and it left me somewhat exhausted. "I am a mess" was the only way I could sum it up this weekend! It felt like I started crying Friday night and stopped Monday morning.

Where did it all begin? Well, before heading off to London I opened a letter from the hospital giving me my next few appointments one of which was for an operation. CRAP BAGS. The last time I had an operation was well, shall we say traumatic? Much of the trauma I have pushed down, deep deep down at a safe distance from 'the feels'. If it's down deep enough it won't meet 'the feels'. It can just stay there, not being felt thank you very much! The news of the impending op however has bought it all flooding up and over the defences.

I thought all ops were off the table but alas no, I do remember the consultant saying he might want to have a look at my hips but I thought that was dependant on scan results. I don't know, maybe it was maybe it wasn't but whatever I am for the surgical table once more. Did I say CRAP BAGS?

Surgery for me isn't as simple as going in for a wee little op, no big deal. This hospital is over 4 hours away from home. 4 hours away from friends and family. We have to fork out to put my husband up in a hotel whilst I stay in hospital so he can visit me which will cost us lord knows how much. We also decided after my last op that regardless of when we would take our daughter up with us along with my mum so she could come to visit me during visiting hours as if we were just 20 minutes up the road. It's further expense but it's not fair on Amelia-Rose to make her stay in Dorset again. We have to make this all as easy as we can for her.

So, that was hanging over us when we made the trip up to London for a physio appointment, 3 hours on the train and a night in a hotel. My poor budget is left cowering somewhere in the corner. We did the meal deal that was available through the hotel we stayed in and I decided to go for it and eat, Tony and I so rarely get meals out etc and every now and again I just want to think 'I don't care how much it hurts or how sick it makes me I just want to enjoy a meal with my husband'... I made it through the starter but eating the main did really hurt then as I admitted defeat I had to wheel myself to the toilet where I was really sick. :-( I've got an appointment to go and see the gastro team urgently but from what I have read it's just another fun part of life with Hypmobility Syndrome.

We had decided to see a bit of London before my appointment which was nice although very cold! The sun was sunning though and there was a promise of spring in the air. There is a certain buzz in London, it's a nice place to be. (There's something I never thought I would write... I am not a city girl)

Turns out London is not wheelchair friendly though! Man did I feel every cobble, every break in the path, every kerb. Pain levels through the roof by the time we get to Hamley's I don't care who or what or how but I need out this chair NOW and I need some serious pain relief. Of course I still have a physio appointment to go to so there is no knocking myself out with pain relief (not that that works anyway! Thanks HMS) We must soldier on.

And then, surrounded by hundreds of busy people it dawns on me. Clo, my girl. You're sick. You're a woman in her 20's whose body is ripped with pain and, you're sick, No hiding, no dressing it up just laid out in front of me the honest truth that I spend so much of my time trying to overcome. When I try to do the things a woman of my age should be able to do with no trouble at all it becomes so glaring and obvious and I feel so very very disabled.

Being the 'over comer' the one who does everything to adapt, to enable herself when it dawns on you that actually, regardless of what you do if your body is put under enough of a strain it will make you pay for it, is a HUGE knock. I have been left pondering if I will ever regain control of my body. In the way that everybody else is able to do without even thinking of it as control! Like, for example, if you move your arm you're in control of that movement, it's not even a matter of control, you just... do it! I can't move any of my limbs without knowing if I will injure myself. When you have joints that dislocate you are aware of all of your movements, what's in line, what isn't, that pain, is it a sub lux or a full? There's constant doubt in your bodies ability to support itself.


Anyway, back to the matter in hand.We get to my appointment and my physio asks how the hydro went. The hydro that was cancelled in December, when I was told that the therapist had left and they weren't booking anymore appointments! My physio was A: Confused and B: Not happy. After some investigation we got told that, that phone call was a clerical error and I should have been doing hydro since December and since I haven't done any hydro I can't do physio!!

Can you imagine how annoyed I was? The expense and the pain and the leaving our daughter over night was all for what? NOTHING?! Are you kidding me? I can just about justify it all when I have an appointment, or even better, several appointments but seriously. When it's for nothing? It really hit me, the injustice of it all!

We decided to go and talk to the hospital PALS about the likelihood of getting some sort of financial support when I have my op (to help put Tony in a hotel so I don't have to be alone with no one to visit me, remember this op is taking place over 4 hours away from home) and as we expected were told that there is nowhere to turn. No government funding, no charity, nothing. The expense was ours to bare. Well, that was enough for me and I did something I very rarely do! I cried! How embarrassing! If I do ever cry it's in the privacy of my own home, never in public but there I was in my wheelchair in the hospital foyer crying!

We made our way back to the station and began our journey home.

That was Wednesday. Amelia-Rose had had a rather unfortunate accident at school that day and she was up all night Wednesday night in pain with her injury (I shan't say too much but lets just say she fell heavily with one leg either side of a triangular wooden climbing frame!) I had her in bed with me but every 2-3 minutes or so she was crying 'Mumma, Mumma it hurts'. I think I eventually got her settled into a deep (ish) sleep at about 5.30am.

There was no way I was sending her to school after such a restless night and felt that she needed to see the doctor just to check that she hadn't actually damaged her pelvis (which she hadn't) but the day after a London trip is always a hard day that I have to set aside as a rest day. Obviously that's never going to happen with a beautiful bouncy 5 year old so by Thursday night I was on my knees tired.

Just in time to wake up Friday morning with a blinding stomach and the arrival of my 'moon time' as some ladies refer to it.

I know I've mentioned this is previous posts but my cycle causes me a tremendous amount of pain. Instead of run of the mill stomach cramps my body reacts as if I am miscarrying and I have proper contractions, relentlessly for 48 hours. By the end of Friday night I was unable to cope with the pain anymore, when it gets this bad I stop being Chloe and am completely consumed. I was rocking and groaning (seriously, it's just like being in labour, the noises are involuntary!) with my head buried in the pillow, I had shut the bedroom door but Amelia-Rose walked in, I don't know how long she had been there because I was in such a ridiculous amount of pain but it upset her. At bedtime she wouldn't come back in the room without Tony and he wasn't allowed to leave. I had settled a bit by then and tried with all my strength to pull myself together for her sake but when you're in that much pain you aren't yourself anymore.

I was devastated that she had seen me in such a state, I try very hard to hide my discomfort from Amelia-Rose but she saw me at my worst.

That on top of everything else was the straw that broke the camels back and for the rest of the weekend the most insignificant thing would make me cry. One I started I just couldn't stop. Great big sobs of tears came frequently and I had to steal many moments to sneak off to shelter Amelia-Rose from my upset.

I am going to the doctors today to talk about a new pain management approach. I am throwing my hands up and being honest that I cannot continue to maintain the quality of life that I have achieved without looking at my meds. I hate that I have to take pain medication to be able to get up and 'live' but I do and I just need to accept that.

I spoke to Steve earlier (who is my musical partner) and even cried on the phone with him! I tell you, 'it's' hit me like a high speed train. I think all I can do at this moment in time is feel what it is I am feeling and wait patiently for it to pass, I can't fight this at the moment. It's too big.

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!

Stepping into 2014 in style.

       So, erm, what's the deal with your t -rex?       

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.

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!

When your body says no

This is something I am really having to learn to live with. I thought I was very good at listening to my body and taking signs and signals from it but of course that was before my body stopped doing what I wanted it to do! It's easy to think you're working well with something, well as long as you're getting your own way! How you deal with it when it stops going your way, well, that is the measure of a person!

So, uncomfortable truth time. My mind and my body are SO disconnected now I actually refer to my own body as if it belongs to someone else. 'It' rather then 'I', 'my body feels' rather then 'I feel'. I am the stubborn child sitting on the floor with my fingers in my ears singing 'LA LA LA I'M NOT LISTNING' I have no relationship with my body and I am having to try really bloody hard to rebuild the scattered fragments that were once 'oneness'. Are you still with me?

I never considered that one could feel detached from ones own body until this all started but alas you'll have to trust me on this one. You know, a lot of hypermobility syndrome patients actually refer to their own bodies as the enemy!

If you asked me to describe my body to you I would say "It's unreliable, it hurts me all the time, it never does what I need it to do and quite frankly I don't trust it anymore" Lets face it, if I was telling you about my new boyfriend you'd tell me to leave him pretty quick!

Can we just get this one thing really clear. This is NOT a self esteem thing, this is not "I feel fat and ugly and I hate my body, look at my minging stress marks" This is "My body works against me and I don't want to be it's friend anymore!"

Example time, lets talk Subluxations. Oooo it's a saucy word isn't it? "Subluxations" Go on, say it out loud a few times, it's a good word to get the mouth round.

Do you know what it is? It is a partial or incomplete dislocation (sexy!!) and let me tell you, they aren't comfortable!
 
My husband and I had a giggle the other night because I got out of bed put my feet on the floor and four of my toes 'went', I stood up and my ankle went, I walked to the bathroom and my knee went, I sat down my other ankle went and then in a grand finale my hip popped. I was literally making music with my body. It was 8 subluxations in about 3 minutes which is quite something even for me. Each one needs tempting back into socket but it is a great example of exactly how unstable my body is.

Why... why would I trust such a thing!

If I wake in the night or in the morning before I get up I do a bit of a mental check list to feel where my joints are (they are always where they are meant to be!) sometimes it's a case of a click here and a click there, a click this and click that and I'm ready to get up. Now, I've done this for probably, well, since I had my daughter, it was just normal and I have been popping my hips and thumbs all my life. I've never even considered that this isn't the 'norm' until I saw it in a video created by another HMS sufferer.

I had my nephew on my lap the other day doing the auntie gig and out of nowhere my rib popped out, I'm not entirely sure (being blinded by pain) how I secured him  ('him' being my GORGEOUS nephew) on to the lap of the woman sitting next to me but I did and somewhat frantically tried to relocate myself whilst trying not to A: Make a scene B: Make anyone who was aware of what was going on reacquaint with their breakfast and C: Puncture a lung.

I have no control over these little (Little she says!) subluxations and it doesn't really make me feel like my body is to be trusted. Although the pain is insane I know what I have to do is remain calm and relocate it  but it can be really hard when you're in a shop and drop something, bend down to pick it up and semi dislocate your hip (for one thing it makes quite the clunk) "And breathe through the pain, wiggle the joint back into socket and try to calm down the members of public around you who have twigged what is going on" Awww, it's a laugh a minute!


 So that begins to explain why I don't trust my body but what other factors are there in this disconnection?

Well, I can have the most wonderful plans (like going to a civil ceremony of two wonderful friends that I have been looking forward to for months) and my body will just not calm down. Things that don't normally swell, swell, the pain just buries itself deeper and deeper into my joints and muscle fatigue makes me feel like I've put on 20 stone in my sleep. My body doesn't care what my plans are if it's going to have a flare up there is nothing I can do but surrender to the 'comfort' of my bed and sit. Oh also, as wonderful as a day or week in bed sounds to you this is absolutely not the same thing. I know every busy mum out there would do just about anything for a day in bed but please believe me I want your health and ability more then you want a day in bed.

Today I have had to spend nearly all day sat on my bed excluding: washing my daughters hair, preparing lunch, putting some washing away and preparing tea. All the activity was almost at breathe taking pain levels but oh my LORD I want to be able to 'do' and 'be' and just have a normal day! (Not that I can claim I have ever been acquainted with normality but that's a whole other story!)

It dawned on me on Friday that I don't remember what it is like to walk without crutches. Sure, I can do a few paces but I mean to like, walk into town or 'go for a walk'. If I close my eyes I can see myself doing it but I can't really remember what it feels like.

It's really hard not to resent something that takes away so many nice things from you. Even if that 'thing' is your body!


Anyway I am trying to heal the rift between body and mind but there is no cure for hypermobility syndrome so this is going to be a relationship I am in for the rest of my life. Like it or not!

I honour my body with what I eat and drink and am actually very particular about nourishing myself  but this is more then that. This is what my body gives back to me.

So I guess, in conclusion sometimes my body just says no and I have to learn to say 'Ok... you win'

Keep the looks to yourself... rant

It has been a while since I have updated here because it has been really intense since I had the hip blocks. There are but a few words to describe that little ordeal.... HOLY MOLY CHEESE AND WHISKERS has it made things WORSE!! Dear Lord the pain, it has this way of making me think it is the worst it could possibly be then it gets WORSE. There have been days since the hip blocks I think it is going to cost me my sanity! I'm doing my mindfulness exercises to try to put it into perspective and not let it make me anxious but boy this is BIG pain now all the time, I seem to be stuck on an 8-10. It's that sort of all consuming pain that makes it harder and harder to put on a brave face. Last week I thought I did pretty well at getting on but two separate people said to me "Are you ok? I saw you the other say from a distance and you looked really ill/tired"

I have had two hospital appointments in London (which involves a lot of travel from Dorset) which hasn't helped at all (physically) although both appointments have been really positive. You know, as positive as they can be when you have a chronic disease! Haha! ;-)

I now know that the Hypermobility Syndrome is 'extensive' and 'significant' and that it is affecting pretty much my entire body significantly bar my elbows (go elbows! woo!) I have been referred on to see consultants about my eye sight, my feet, my hands and my bowel. I have also been referred to hydrotherapy, a programme especially for people with HMS and EDS and will possibly be sent for in patient rehabilitation. It was the first time (bar my fabulous hip specialist who I started seeing in August) that I have felt I have really been listened to by a consultant at hospital. Not only did she listen she confirmed and affirmed everything that I said about the way my body works and feels and the crazy things it does.

It was also confirmed that the surgery I had on my hip last year will have definitely made my right hip worse and that isn't in my head. I KNEW it was worse but explaining that to people can be really frustrating.

So why the title of this blog? Well, I want to have a little rant. I am not one for ranting or confrontation or 'telling people how it is' in fact I generally shy away from all three HOWEVER here I go...

There are some people sadly who feel that it is their right to judge a disabled person because CLEARLY they can tell the persons extensive medical history just by looking at them and they're not sick really are they? They are just lazy. They believe they have the right to decide that if a person is in a wheelchair or on a mobility scooter they aren't equal to them and it's ok to treat them differently. (Not at all helped by our current governments attitude to disabled people)  Well guess what? (If you are a decent human being, as I'm sure you are, you will know the answer to this!) The person you are looking down your nose at has as much right to be where ever it is you are as you do and they have feelings too. Giving them a 'oh you disgusting non human' look will likely stay with that person all day and I see absolutely no need for it.

It's typical bully syndrome. They pick on people 'weaker' then themselves who wouldn't have a fair chance of 'fighting' back and it is outrageous. God I wish I had the strength in me to stand up for myself when people make crude remarks or give me filthy looks. I wish I could publically shame them for the discriminative nasty's that they are but I am yet to build up the 'thick skin' required to deliver such a come back.

People are shocked and taken a back when I tell them about the 'looks' and the comments that I get but it happens all the time, probably once an outing and it's making it really difficult to want to go out. I LOVE my home town and I have always got such a buzz from being out and about in it but when the pain is physically as bad as it has been recently it's really hard to potentially set yourself up for a dose of emotional pain! I get a lot of 'You have to keep going out and learn to live with this' from people who don't necessarily understand that it isn't as easy as that and I know their intentions are good ones but what I really need are people who will say to me 'Don't fancy going out today, I'll come to you'

Back in the spring I would find it really hurtful that people would actually get cross and become distant with me if I said no to an invitation say two or three times and I realised they gave up on me altogether but especially when the town is full of tourists it's really hard to find the bravery to head out, throw in the brain fog that is triggered by the stress of getting such looks and comments and a simple coffee or nip to the shops can turn into an overwhelming experience!

I am going to have to be really kind to my body this week and take it really easy physically. I am working on not equating what I can do physically to how I feel emotionally and have started doing more small scale crafts again so I can sit on the bed and give my body that physical rest it desperately needs when the pain is this bad but keep the old brain engaged in nice things! I will also hopefully have more time and energy to start writing this daily again. I don't want to just update it once or twice a month!

Blessings x x

Getting through

Yesterday I went and had hip blocks put in to both of my hips. It is a procedure where the doctor puts an injection into your joint and injects a local anaesthetic and steroid. It's not a nice procedure to have done although yesterdays was less intrusive then when I had the dye put in for my MRI last year because that went into the groin and this Dr went in from my outer thigh, really where you think of when you think of your hip. You're normally given a sedative or a general but for me to get the blocks done before I have to go back to London the only appointment they could give me was yesterday and there was no one around who could sedate me.

The first one went in fairly straightforward. It hurt but was endurable. My body seems to react to the intensity of the pain by making me laugh, not just a little chuckle, full on hysterical laughter. I've come to believe that when our body is going through something exceptional we react in one of three ways. You can go into shock. Cry and get very upset and panic or you reach this weird laugh hysteria. I went into crazy loon laugh mode.

The injection in the left side was nowhere near as easy. The needle wouldn't pass into the joint and it took longer. The team were wonderful, the doctor was great but it really hurt. The pain went up into my back and down my leg and when I thought surely he must be done the Dr apologised for not having it in place yet! I was sure he must have almost been finished but he hadn't been able to get the needle in the right place yet!

The nurse told me a few times how brave I was which sounded strange to me although I appreciated that she acknowledged (and the Dr too) that what was happening was really not an easy thing to go through and I coping well! The thing is, I didn't feel brave! As I laughed and ooo'ed and aaa aah aah  my way through the procedure I didn't exactly feel like a super hero!

However,  on the way home I realised what I did feel was proud of myself. I didn't cry or get overwhelmed. I went in and I endured it and managed to banter with the wonderful medical team. It's yet another nasty big hospital appointment that I've got through alone. These are the appointments that Tony can take me to but can't come in with me. I have to do it alone.

The Dr wanted me to be wheeled through into recovery on my 'trolley' and was happy to know I had a wheelchair. Having both done at once (well in one appointment) made me feel very unstable and wobbly and when we got home I fell up the stairs a bit, nothing dramatic, more of a stumble but I don't think there was anyway I was making it up the stairs alone. Enter my prince charming who put me over his shoulder and gave me a fire mans lift up the stairs. The hysterical pain induced laughing came back but I didn't have to climb the stairs!

Over night was really hard, the pain wasn't only in my hips but down my legs, into my back, randomly my feet hurt, my tummy felt like I had pulled a muscle and my wrists hurt?? What is that about?! I guess it's the hypermobility syndrome, the feet and wrists possibly from where I was clenching so much during the injections? My pelvis and feet felt SO heavy. I managed two hours sleep in two one hour blocks and haven't managed to catch up on any today which is a bit of a bummer. I am so rubbish at sleeping during the day though.

I'm back at the pain clinic Thursday but the next two big appointment to come are both in London one of the 8th November and the other on the 15th.

To try to keep my mind off the pain last night I went on a bit of an online shopping spree! Whoops! Anyway I feel far more organised for Christmas (I know, I know, it's October but I'm making loads of presents this year!) and I also brought all the decorations for Amelia-Rose's birthday (which is, erm... January!) oh and did a food shop.

Hopefully these blocks will bring a bit of calm, I am SO ready for manageable pain.

Autumn days

Today has been cold but mostly wonderful. My thumb is really sore at the minute and I'm finding it difficult to do every day things that should just be easy. Chopping veg for stew earlier was horrible! I make a lot of stews for Tony and Amelia-Rose because I can do it in the morning before I'm too tired and I know it will just bubble away in the slow cooker and they'll have a lovely dinner. There's something very therapeutic about a good stew I think! 

I use my left thumb to hold in the lever on my mobility scooter which is unavoidable but boy am I paying for it at the minute!  

 

 

Tony is on a late shift tonight so started at 3pm and will be home about 10.15pm. It meant I picked Amelia-Rose up from school and we got to spend the evening just the two of us which was nice. Obviously it goes without saying it's lovely when Tony is around but Amelia-Rose and I got to spend some real quality time together today and it was absolutely wonderful.

Autumn is my favourite time of year, those wonderful blue sky days with a nip in the air and crunchy leaves under foot. I think there is something magical about Autumn.

On the way home from school Amelia-Rose and I collected lots of 'Autumn things' and used them to make an Autumn picture using sticky back plastic when we got home. Every pile of leaves we found we crunched in. Amelia-Rose with her feet and me on my mobility scooter! Lord knows what people must have thought seeing a fully grown woman going round and round in circles through leaf piles but it made Amelia-Rose and I happy and that's all that matters!

I took her a kinder egg for a treat after school and she got a little blue horse in it, when she first got home I had to go in the house whilst she hid it in the garden, she then drew me a treasure map and I had to go out into the garden and find her. I should point out Amelia-Rose is already better at giving directions then I have ever been! I was most impressed! After that we made the picture and Amelia and pretending the picture was pony land and I was the first human to ever be allowed into pony land. I quietly put the camera on the table and got some very sweet 'pony view' pictures and also made a little film. You can't see either Amelia-Rose or I in it, just hear us talking but I feel like I captured a really special time.

We had a nice meal together. I had a carrot, apple and ginger smoothie because I'm still struggling with my jaw and didn't fancy a crunchy salad but I am really enjoying and sticking to the raw food. It's amazing what it is doing for my energy levels.

 

I hope days like today are the days Amelia-Rose remembers when she is older. It really reminded me of how things use to be before I became disabled and I hope she holds onto these memories. Being as creative as I am I have always loved the creativity being a mum brings back into your life. We would always have some craft project or another on the go and be off on long nature walks looking for fairies or dragons.

 

When Amelia-Rose was born she reopened my eyes to the beauty and magic of the world and I loved living life at her pace. Everything was new and exciting and demanded being explored. If we were walking past a row of houses we would make up detailed stories of who might live inside and pretend we knew all about them. I am ashamed to say when pain became such a big part of my life I lost some of that. It was so hard to just function anything beyond that suddenly became out of my reach.

 

I feel like at the minute we are getting that back and that excites me so much. There is something very cruel about not being able to be the mum you know you can be.

 

I love the way that Autumn eases us into Winter. It is a slow transition that gently prepares us all for the darker days ahead. It has made me think about how my life is transitioning from thinking I was going to get better to accepting that this is something I have to manage my whole life.

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"