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.