Re previous blog

Pondering

I was just sitting, pondering over yesterday…….

You see, I went out with mum as usual, we ended up in M&S – just for a change – and finding they had 20% off household, I soon had my eye caught by  throw and cushions which I thought would brighten up my livingroom. I don’t really want to spend money on a new settee, due to my early retirement my income levels are somewhat reduced, so I thought ok why not.!

I get home and, of course, need to get it all organised, so settee needs to be stripped of everything, and you can’t put new stuff on without cleaning, so hoover is brought out, attachments put on…. Eventually get to the stage of pulling settee out and starting to place the throws and get them to fit the settee, arrange cushions, push it back, then hoover the full room, then dust the whole room, then hoover the hall and kitchen….. then old cushions to be put away, old throw in machine……..by which time I am soaked to the skin, it is so humid and I am so tired and really fighting to keep going. Go to make a cuppa and see dishes still waiting to be washed, so do them, when I eventually sit down with a cuppa and a glass of water for the pills, I can feel everything tightening and crunching and stiffening up, and sure thing try to stand and oh my goodness, it took several goes. I had been looking forward to a shower and standing under the hot water and into clean nightie etc., but there was no way on earth I would manage that. However, those with similar health issues will understand and empathise, I got the enjoyment of both buying and seeing the end result, I couldn’t not see it all done, and, if I hadn’t done it then, I would have finished the day on a downer both by not seeing the result, and knowing it was still to be done without the benefit of the adrenalin!!

I made an informed choice to – in essence – cause myself pain and fatigue, but to have the same full experience – like anyone else would, of seeing the results of my days work the same day. Next day I can get up and enjoy the sight of the work done, possibley crawling there, but hey ho, I can have a quiet day and potter about keeping moving gently. The other consideration is that I might have not been able to do it the next day, so the frustration would be overwhelming and probably end in a cry of “no fair!”. This is my life and the life of many many other people with chronic illness, everything is a balancing act, everything is a trade off, everything has to be considered to try and get the best out of a situation, even something so mundane as what I did yesterday.

This is now “tomorrow” I feel rotten, I am sore, I am so tired I could cry, my hands are swollen and red, my eyes are all sore and a little bit on the pink side, my guts are very unhappy and my head is so sore. As soon as I can, I am in that shower, clutching the rail and letting the hot water pound down and hopefully loosen me up a bit, I will then put on some nice loose comfy clothes and go through and let my new bright settee cheer me up, read, watch Tv/DVD whatever takes my fancy, for as long as I can.

Sleep

Sleep, something there never seems to be enough of. Sleeping can be difficult for us as the pain can hinder peaceful sleep, or getting your aching joints into a comfortable position for any length of time, or exhaustion allows you to sleep – for a while. We have become used to the wee small hours when everyone else seems to be asleep but we have woken up with pain, or discomfort.

Do you lie there and hope sleep comes back, or do you get up and try to stretch, move, anything to help aid a degree of comfort so that when you go back to bed, so you might sleep? If you have someone else there, you have the added pressure of trying not to wake them too, if you are working you have the stress of knowing how wrung out you will feel the next day while trying to carry out your duties well.

Then there is the fatigue, it is such a debilitation part of AS, but when combined with lack of sleep can make it impossible to carry on – to do your job, to have a social life. I have to say that one of the most enjoyable parts of not working anymore is that when I wake up at 2 or 3 in the morning – it doesn’t matter!! I can get up – make a cuppa – settle with my book - with no worry. I remember lying awake, especially on a Sunday night, and watching the hours go by knowing I needed to sleep, and sometimes with no sleep, sometimes with an hour or 2, because of course the more you worry about it, the more difficult it becomes, and then having to try and function at work.….

Most people go through periods in their lives when they find sleep difficult, but for us, and others like us when fatigue is part to the disease; it is difficult to describe the intense bone weariness, the feeling of walking through treacle, both physically and mentally. Oh I am so jealous of those people who can cat nap, I have never ever been able to do that either, but I am expert at staying awake all night long……..

MOW – Weathering the Storm

I love the idea of AS being likened to a storm, sometimes roaring and trying to knock you off your feet and flatten  you, at other times grumbling quietly in the back ground and you are just waiting and waiting and watching for it to spring to life, and then there is the calm………..

After so many years and so much fusing, I don’t have too many hurricanes these days, thank goodness, but the quiet grumbling can be every bit as unsettling. That is how I tend to be most of the time these days. Never mad swirling frightening storm, but just a grumble with the odd skirl, just enough to stop you from relaxing, but enough to make sure you don’t give up on the meds!!

I can remember well some of the bad storms, the screaming and crying with the pain of it all, wandering the house at night holding onto the wall as you are so tired of being so uncomfortable in bed and unable to sleep, and feeling like banging your head off the wall you are holding onto to get some release from it all. Trying to travel to get to the doctor and ending up crouching on the floor in the back of a cab as you couldn’t take the pain of feeling every pothole in the road. But you all know what I mean, you have all been there. You do toughen up and your pain threshold rises up. It has to.

But we come through it, there is no point in worrying about it, it doesn’t help. And we learn to zip our mouths when someone tells you they know how you feel as they hurt their back lifting something heavy……

We get better and better at dealing with it, we get better and better at hiding it, and better and better at living with it. We weather the storm and learn to enjoy the calm, be apprehensive about the quiet grumbling, but when the big one hits – well been there done that, we weather it, we get through it, till the next time.

The little things

Its Saturday morning, OH off out shopping, I have the house to myself. Bliss!

My OH works nights so, usually in the mornings I am creeping around trying to be as quiet as possible, and cant do anything in a relaxed, noisy way, till he wakes up. But on Saturday, instead of the long lie I feel like, I jump out of bed when he leaves the flat at 8.30, and hoover - yes hoover in the morning - wow!! I do dishes & whatever else needs doing / I want to do, so I can sit down with a cuppa, and the papers, and some music on. I am listening to a CD I bought some time ago by Cyndi Lauper, which if he heard he would not have a positive thing to say, but would make comment on anyway, but this morning I can play it and play it loudly!!!

So I am happy and content, CD playing loudly, papers around me, nice big cuppa, cat by my side, aint life great, at least in a small way for the next hour or so................ Hey I take happy when I can

HOPE

Hope

What do I hope:

I hope that the new people being diagnosed with AS have more luck than us oldies

I hope that the fabulous work being undertaken by so many new groups to spread the word will help for AS to be understood better 

by families and friends, and that doctors will take more interest

I hope that the time taken to diagnose AS will become much shorter as the word spreads

I hope that if people get on the TNF drugs early enough they will halt the progress of AS, both in terms of pain and disfigurement

I hope that knowledge of AS will spread to the people who decide about benefits payable, about disability payments, and early retirement so there doesn’t have to be the continual struggle to prove what AS is.

More personally I hope that I have reached the end of the road as far as flares go, being so very bent the pain from just being twisted is enough without more flares

I hope I manage to have no more breaks

I hope my eyes don’t get any worse

I also hope that everyone with AS takes the plunge to join one of the fabulous support groups. It will change their lives to have friends and support around them, where ideas and tips are passed around and where you are never alone. The best of which, is of course, MOW!!!