Musings and Snoozes

A rather sappy dedication to my husband, for which I apologise to the rest of you!

Pooh_piglet

This pretty much sums up me and Jon and I feel he deserves a bit of credit, not only for how much he puts up with (which is a lot!), but also for how much he looks after me and always tries to make me feel “me” again.

This weekend was supposed to be spent in Leeds, but being utterly dead and in quite a lot of pain from doing too much over the last few weeks, I finally had to give in and admit I couldn’t go. It’s probably the first time I’ve actually decided I can’t do something because of being ill and despite being very disappointed, I was rather proud of myself for finally learning that I can’t do everything I want to do and expect to be ok. So instead, Jon has spent the weekend looking after me. I don’t mean anything over the top, or pandering to my every need, but just doing little things that make my life a bit easier, including getting up and finding me painkillers yesterday morning when I thought my whole body might explode. Someone at work asked me how Jon copes with me (in the illness sense, rather than the “good god, you’re a pain in the backside” sense :P) and when I started telling her all the things he does for me, it just made me stop and realise how very lucky I am. He doesn’t get angry with me when I can’t even remember my own name, he reminds me when and which tablets to take (something which I utterly can’t be trusted with), he always slows down to walk at my pace, rather than letting it kill me to keep up with him, he makes me cups of tea when I can’t get up, and wakes up with me in the middle of the night when I’m in so much pain I think I might die (melodramatic, moi?!).

Essentially, I did quite well with my husband choosing, and every once in a while, he deserves some recognition for this. So here is to my husband, who didn’t sign up to many years of looking after his wife (at least not yet!), but does it anyway and never makes me feel anything less for it šŸ™‚

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Onwards, ever upwards (as Claire would say)

dream catch me

 

Well it’s only taken me a nearly a week to do this, but never mind.

So, things are looking up. Or at least in theory they should be, right now I don’t feel as though I’m getting very far, but I’m trying to stay positive. I had my much anticipated hospital appointment last Tuesday and, apart from their car park charges and retarded send you here, there and everywhere system, I have nothing but praise for the NHS. I saw a very lovely consultant, who thankfully got my “I’m nervous so I’m probably going to say stupid things” sense of humour and who was just generally very nice and very easy to talk to. My overriding memories of hospital as a child involved going to seeĀ  a lot of doctors and specialists when I had epilepsy, and aside from one doctor who was amazing, I mostly just remember being a little bit intimidated by most of them. Coupled with the fact that I haven’t really been into hospital since my Dad died, I wasn’t exactly looking forward to the practicalities of this appointment. Thankfully, being in a completely new built part of the hospital, it brought back no horrible memories and I wasn’t the least bit intimidated. Anyway, I was asked a lot of questions about what I do, how I feel, what sort of pain I have, how tired I am etc, and was then poked and prodded in all the places they expect fibromyalgia patiens to hurt in. Unsurprisingly I hurt in most of them, and thus the diagnosis was a foregone conclusion. What impressed me though is what they’re doing about it and how easy it seemed to be. Unlike going to my GP, who don’t get me wrong has been amazing, you don’t have to wait for anything at the hospital and they have no one else to refer you to and therefore things get done on the spot. Consequently I’m now on medication to help me get a more restful night’s sleep (very low dosage antidepressants) and I’m going to start seeing a physiotherapist so I can start a graded exercise program and actually start doing something without killing myself. I’m not sure which of the two I’m more excited about, as essentially the two worst parts of having ME/Fibromyalgia are the not being able to feel any better, no matter how much sleep you get, and not being able to do much exercise for fear of hurting yourself/knackering yourself. So I have high hopes for both these things! So far the meds haven’t kicked in, but then I know they’re going to take a good few weeks before I notice anything. The main thing so far is that they’re not making me feel any worse and I’m not waking up looking and feeling like a zombie. I’m not sure when the physio starts or how they go about this, but I’m optimistic that as I have a check up in May at the hospital to see how I’m getting on, I’d like to think it will have started by then. We shall see….

So yes, in theory I’m all kinds of optimistic. Sadly in practice I’m still a bit fed up about how rubbish I feel and not being able to break any sort of cycle to feel better. Part of my problem is work, as I’m not exactly what you’d call happy there and nor is it a job that motivates me to get out of bed in any way, shape or form in a morning. When it’s hard enough to get out of bed as it is, it doesn’t help if you don’t actually want to be going to the place you’re getting out of bed for. Thankfully I get on well with everyone I work with, so that at least is a little glimmer that gets me moving in the morning, but it’s far from ideal! It’s been mooted that reducing my hours would be beneficial, but I’m loathed to lose the money so the plan at the moment is see how the meds go, along with the physio hopefully, and then see if I feel any different. I have at least mentioned this to the boss, so if and when it comes to it, it shouldn’t come as a complete surprise.

The other problem is the fact that it’s still winter. With the days being so short (although I am now leaving work in daylight!) it makes it hard for me to do things after work, as I tend to feel that once it goes dark, that’s it for the day. I long for warm, summer evenings where at least if nothing else, I can soak up some much needed vitamin D after work. It doesn’t even have to be a heatwave, which is probably lucky since we’re unlikely to get one in England, but just to feel a little bit of sun on my skin and feel like the day was that bit longer, would help enormously. Sadly I realise there is very little I can do about this and so I just have to try and change my way of thinking a bit. At least it’s not too long now til the clocks go forward, so the only way is up and all that.

For now though, it’s just taking each day as it comes and enjoying the energy when it materialises and giving in to the sofa when it doesn’t. The sooner I learn to listen to my body and accept that what I have is actually an illness, and not just self induced patheticness, the better I’ll be. Theory and all that though is a wonderful thing!

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One Step At A Time Chick….

One Step

I will do a proper update on how my hospital appointment went when I’m a bit more awake. Suffice to say it was positive, and the little determined chick sums it all up for now šŸ™‚

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Can’t come soon enough

One week and 2 days until my hospital appointment and it can’t come soon enough. I don’t even know what I’m expecting to get out of it, but it’ll just be nice to feel I’m getting somewhere with all this. At the moment I know I feel rubbish, but I’ve no real idea of what to do to help improve things or how careful I should be being in terms of not doing too much, but also at what point do I have to make myself do things even if I feel I can’t?! I just need some sort of guidance about how to manage this overall and really, I suppose I’d like some reassurance that it’s ok to not be able to move off the sofa and that sometimes I legitimately need to do nothing. Funnily enough, doing nothing is something I think I’m really good at, but actually I’m rubbish at it. Firstly I’ve still yet to get an idea of how much is too much – there are days when I think that a bit of coffee and shopping will be fine, when in actual fact it absolutely kills me. Secondly when I do admit that I need to do vey little, I just end up feeling guily and that I’m being a bit pathetic and that I’m not really ill. I suppose that’s it really, I’d just like somebody to write me a note that says I’m not being a wuss, I really am ill and that I should be excused from life every now and again. Sadly I don’t think that’s exactly what’s going to come of my appointment, but it might be a step in the right direction in terms of me accepting that it’s ok to feel a bit of a mess sometimes!

Anyway, ramble over, what would help is if I actually went to bed and tried to get some sleep!

Night all x

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