Tag Archives: hydrotherapy

Going Solo

Pain is exhausting… and troubling. It’s now my worst enemy, and today I am facing it alone.

I have an appointment with a physiotherapist to discuss Hydrotherapy today. In two hours. My cab is now booked, my appointment is for 1pm. My friend was supposed to be here with me to help – I am not anywhere near ready to go out somewhere alone. Yet today I must somehow do so. She has an interview today, a last-minute request for a job she wanted – in Wales. So she left yesterday to be ready for it this morning.

I have been alone so far for 24 hours – but that’s not really the problem. The problem is that having to do things myself hurts. Too much. Far too much. So I go without, I avoid, and I do not do anything that will make the pain worse. But today… today I have to do the exact opposite.

I must somehow manage to endure the pain and go to this appointment alone.

 

Solo Expedition

All Stressed OutI am daunted. Overwhelmed. Scared. I’m sitting here, with the Dragon Age Inquisition [PS4 game] launch window that plays the gorgeous symphonic theme music on a loop, over and over again. It’s comforting, soothing, a noise I know well and gives me strength and calm (operate conditioning: it’s how I feel when I’m playing the game, hence it makes me feel the same when I just here the music). I feel rather… trapped. Like a rabbit in a corner that knows it’s going to be done in, and is just waiting for that moment to come, trembling in that corner and just… waiting.

I have never been out on my own before – not since this happened. I don’t like going out anyway. Add this to the mix and I’m borderline terrified.

Somehow, I must prepare my own wheelchair, then get it out of the house (aka tiny flat that the wheelchair doesn’t really fit in) on my own, and over a rather tall hump where the front door frame is quite raised from the floor (I’ve tried getting it over it before, and it’s excruciating and such a difficult to do). Then I have to get it and myself out to the cab. Get in the cab and get to the hospital. Somehow then take myself in my chair all the way up to the physio department. Have my consultation. Then do it all again – backwards.

 

I can only prepare so much, but I’m doing so. I’ve taken Pregabalin, Devil’s Claw, and my joint pills. Just before the can is due I’ll take the 8mg co-codramol (I can’t take anything stronger). And that’s it. There is nothing more I can take. The rest is mental and emotional willpower alone. And my innate stubbornness.

I must try and remember this is no gauntlet compared to what else I have faced in my life and this awful pain I will endure will still be nothing in comparison… Although, that is difficult to remember whilst going through it all. But what is one more crucible when you’ve already had several?

 

It doesn’t help that I was already in a lot of pain this morning – today, the shoes my friend wanted for her interview came… after she left for it yesterday. They came at 8:30am – whilst I was still asleep. I realised it would be the shoes, so I gritted my teeth and dragged myself up on my own (I usually am helped to prevent so much pain), with my stick, and put on my dressing gown and went to answer the door. By the time I then got back to bed, I was in too much pain to sleep anymore or rest, but I couldn’t get up until I had psyched myself up enough to endure the pain it would take to do so.

I couldn’t make coffee and I had to wait until the Pregabalin kicked in… so I didn’t have any until way after 10:30am. It’s already been a nightmare day before it even starts.

Now I have my appointment to look forward to.

 

Uneasy Wait…
Soul on beanbag

Soul

Even Soul (the dog) can feel something is very wrong. He’s lying next to me whining and then trying to play with me, chew me (he’s a Staffie), rolling on his back with his little tail wagging madly, and licking my face, trying to cheer me up. Poor guy doesn’t understand why, but he certainly knows things are just not right.

My head aches, my mind burns, my bones ache. One coffee just isn’t enough… but choices must be made, and I must choose to not inflict more pain than necessary, if it is going to cost me more than I am willing to handle. If I am early enough, perhaps I can get something from the shop/cafeteria or whatever they have there (although, it’s not the best hospital for any services, least of all food – in fact it’s one of the most under-funded hospitals I’ve ever seen, and I’ve been to/worked in many).

It is now just half an hour before the cab comes. I must get everything ready that I can… And I really hope I am physically capable of doing this, even if it does inflict pain. As long as I am physically capable of this, I will manage… unfortunately, the reason I am going is that I am not physically capable of much and require hydrotherapy to support and strengthen me again (with less pain, thanks to the warm water). The idea is you go to hydrotherapy first and then do stuff like this, when you’re stronger. Not the other way around.

I said before Asperger’s and pain do not mix well together. Well, now they’re downright exploding like domino-effect multi-detonations. I’m about two minutes away from a panic attack and subsequent meltdown (hence writing this to calm me and make some sense out of it, and the repetitive gorgeous music from my joint-favourite game). I’m alone with no one to help me… well, no one human. And if I didn’t have Soul here to comfort me I would be in pieces without a doubt.

Now I must go and prepare… and pray that I can somehow make it on my own.

 

Focus On Your Strength

Focus On Strength

 

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Final Answer

I finally had an appointment with Rheumatology. And with maybe just a half a dozen questions the doctor told me right away what I had was undoubtedly Fibromyalgia. Without question.

Do Not Give Up... BeginningThe definitiveness of his diagnosis with a few questions and barely a glance at me, and poking me gently in a couple of the known “key” areas of pain for fibro, was quite a revelation. Especially after waiting for so long to get one. Then just like that, after nearly two years, in about three minutes tells me without a doubt in his mind that it’s Fibromyalgia. Where was he about 18 months ago…? He was a straight-talking quite typical Irish doctor (I think they’re my favourites – they just tell you everything as it is without dancing or mollycoddling or being confusing) – the plain-and-simple “oh, it’s definitely fibromyalgia”, said as if it was a clear as day and anyone should have seen it, was just great to hear after so much dancing about.

I even had a list of everything I had wanted to tell him about (don’t they all ask for your symptoms?)… but then he just went rattled them off for me, and I just had to say yes to them all. Pretty easy.

The doctor was quite taken aback by the severity of my situation and the amount of pain I was in (…way to go for making me feel really sorry for myself!). He didn’t like that I was “young” (he was middle-aged-ish, so it’s all relative…!), having to use a wheelchair to get about, and almost entirely dependent on other people. His first recommendation was yoga – and I told him that I had spent at least 10 years practicing before all this. I also told him things were easier with hot water and the bath helped, but I was scared of water. He responded with that it was a shame about that as he would recommend hydrotherapy, as I was already experiencing some dystrophy – because of the severity of the pain I can hardly move my legs from it, and ergo I can’t move them much anymore at all, making the pain of walking and standing worse. The hydrotherapy would work around this: The warmth of the water would make it easier for me to move about, and the water itself would buoy me and take my weight for me (not to mention moving in water is harder to do as it presses against you, making you work harder).

I’m willing to do any try anything to help, even if it’s a little bit – so he popped next door to the hydrotherapy team to have a quick discussion about whether they could help me. He came back pleased that they were more than confident that they would, so he set me up with a hydrotherapy referral with the physio department.

Apparently they teach you various ways of exercising in the warm water to maintain muscle strength with less pain. Hopefully with this I can at least walk again a little, and control the pain whilst doing so just by being stronger. Then after the block of however long it is you then just find a warm pool somewhere and then maintain the treatment from there on. I don’t like water – well, actually I’m pretty damn terrified of it – but I’ll try pretty much anything, within reason. Hopefully I’ll be able to walk some again, and just need the chair for long distance stuff. It’s worth tolerating and controlling the fear (they give you armbands, right…?) if it will help. Fear will not be the thing preventing me from getting better, that’s for sure. If I can get stronger again, I’ll also be able to sing again. Maybe focus more on being productive instead of just being in pain. Anything is better than what I have now, which is so very little.

If I can even get it to a 50/50 situation, it will be so much better than this. If I can walk a small amount with some kind of walking aid, be able to go into the GP practice on my own from a cab, maybe even to the local shop on the corner, or just walk for a few minutes around the supermarket for a few things.

After getting my new, light wheelchair and being able to learn to push myself about, my arms and shoulders have become stronger – I now can push myself around quite a bit fairly effectively on good surfaces (…just don’t get me started about the 6-inch high tree roots pushing out of the tar-mac paving every 30 yards on the pavements here), and I did pretty well at the Lea Valley Park trail by Walthem Abbey (it was fairly flat and tar-macked). All I need now for it is a cup-holder and I’m good to go far in it, powering me with coffee the as I go!

Now I have something to go on, something to work with. There maybe no “cure” or known treatment that really absolutely helps, but there are some things to try that could work. It’s a personal journey for each sufferer, where you just try things and see what works. Every person is different, and all you can do is try and treat symptoms. I’m lucky the Pregabalin works for me, but there must be other things – hopefully the hydrotherapy will help.

The doctor also told me that it definitely has a wider influence on you than just pain – something that was unexpected. I hadn’t realised before that sufferers of fibromyalgia can’t sleep properly; they never go into that deep sleep (I’ve never slept well, but I’ve never been quite this bad before). I certainly need to do a lot more reading up as to what more this affects, instead of just focusing on the pain. It does not help that quite a few of the fibro symptoms are very similar to some of the AS problems I have, and they’re probably exacerbating them extensively. I need to try and detangle them from each other and work on finding a way of dealing with them.

But… At least now I have answers for it all. I’ve got stuff to work with now and hopefully it’ll get at least a little better from here on out. Something is also better than nothing, and information is the best something at all because then you know what you’re dealing with and take some control back for yourself.

 

 

Start Over

 


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