I get it

If you live with chronic illness, you generally live with chronic pain. That pain can be anywhere, it can be in the same place all the time, or it can be transient. It can be easy to explain or it can leave you constantly puzzled and constantly questioning, is this part of my condition, or is this something else. At times it seems as though its only purpose is to drive us made, at others, it feels like a warning. Pain can dominate our days, or it can lie quiet, just waiting to catch you off guard, like some kind of ninja style assassin. Whichever it is, there is only one thing for sure, it is going to hurt, regardless of the medication, or the care that we take, it will hurt us.

Personally, I have few memories of life without pain. Brief spells in my childhood, but, the dominate memories, all contain pain of some sort. In fact, not my first, but my second memory of my life, is all about pain, not from illness, but from curiosity. I must have been about three, definitely no older. My mother had one of those old-fashioned sewing machines, mind you, it probably wasn’t that old at the time. She was using it and I was stood watching the flywheel at the back of it. Those spinning spokes fascinated me and despite my mother’s warnings, I just had to put my finger into them. Other than the pain, I don’t remember much else, other than the fact, that it ripped my fingernail off. The first pain, that had no explanation, didn’t show up until I reached my twenties, and from then on, I don’t remember ever being free of it.

These days, I don’t think there is a minute of my day, that doesn’t include pain. I know that that sounds horrific, but I’m not talking about the stop you dead pain that leaves you in tears, no I’m talking about those smaller ones, those aches and pains that seem to live in every cell. A sudden pain in my lung, when I take a breath, then in my lower gut, from something moving inside. Along with the one that for no reason which appeared high in my left lung, next down to my diaphragm, and a shooting spasm in the arch of my left foot, with an ache sitting steadily in my right shin, just as the back of both lungs gently burn and both arms complain about typing. I wrote that as it was happening, which means it probably took twice as long as it did for you to read it. A snapshot of me, but I could go on and on as every minute is like that. There is no silence in my body, no time, other than when I am asleep, that pain leaves my alone. Thanks to the medications, the very ones I so wish, I didn’t have to take, all of it is at a level that I can cope with, a level I have adapted to see as normality.

If it wasn’t for those tablets and elixirs that I swallow on the demand of the clock, I don’t know what life would be like. If I forget or get lost in time, if I don’t take them, when they can take over from the previous batch, I get a glimpse. It’s enough to send me moving about as fast as I can, to correct my mistake. Even then, I know there will be some medication still in my system. Not enough to keep me in my normality, so the truth, the reality of life without them, I have no idea, and although I don’t want to take them, I also know, I couldn’t stand to live without them. That is how controlling pain is. It takes over our lives, in ways that those who have never felt it, can possibly every understand. Whether I like it or not, my life is pain, low level or extreme, it is my life and I can’t escape it, any more than all those who share my lot of life with chronic illness, can escape theirs.

If we didn’t adapt, if we couldn’t adapt, then none of us would exist for long. They can prescribe all the drugs they like, but, they never take all the pain alway. I used to wonder why it was that when reading history, there appears to have not been, half the illnesses there are now, I think I now understand. Imagine your life in 1500’s, what would you have done, with no drugs, no treatments strong enough to help you, or nothing to help you at all. Even not, nothing gives us the freedom and peace that we yearn for, but they get close enough, to stop us from being driven insane. I used to fear that I would lose my sanity. I used to fear that I would fall into those deep depressions that so many do. As I have written before, I have been there a long time ago, drive by the hell of my earlier life, so I know depression when I see it. Adapting isn’t enough, it’s essential, but not enough.

For me, I have two sanctuaries, the first is clear, this, everything that I write, this is my free and constant counselor. You don’t need a person to talk through how you feel. Write it down and firstly, you fix so much in your own head, just because it’s no longer just in there. Publish it, and the world tells you what needs to be done. My second, I’ve also written about many times, simple relaxation. I know many poo-poo it, but the longer you use it, the more practised you become, you really can remove pain, but unfortunately, only while you’re doing it and for a short while afterwards. Having said that, recently I have discovered that even when I am writing, I can apply a not quite so effective, but helpful level of relaxation when the pain gets too annoying. I guess, that that is one of the tricks, that once you’ve mastered the silent lying down in the dark version, becomes possible. A few seconds concentrating on the top and base of my spine, then the area where the pain is worst, can often give me the relief I need, when pain edges above normal. It helps, just as constantly checking my posture, even when it’s not causing pain, all adds up to some form of control. When all else fails, then there are more meds. those booster pills, which flood me with a quick shock of more Morphine. They are always there beside me, ready for ease of access, but I keep them, for when nothing else works.

Pain is our life, fact, yes, we and our doctors can tweak at it, but its ours for life. Strangely, once you accept that as a fact, life get’s easier. Before I did, I made it worse, I fretted and stressed about it. I was still at the point when I stupidly believed, that medication should take it away totally. If only someone had explained that it didn’t work that way, maybe, I might have avoided a couple of years of what was, self-imposed hell. Now I understand. Now I get it. I don’t like it, but I get it.


Please read my blog from 2 years ago today – 01/01/2014 – Your future laid out before you

I am suffering again this morning with not being able to find any way of sitting that is comfortable. It actually started at around 5 am this morning, I woke up totally aware from the first second that my left buttock…..



Body dip

As soon as I lay down on my bed, I could see flashing lights. The last part of my body had joined in, optical neuritis was clearly playing a bigger role than I thought. I had been very aware that my eyes were just that bit more blurred than usual, and that the seasick sensation, when watching anything that moved, was growing stronger. I often feel it, so it’s nothing new, but when you can’t actually stand the effect of scrolling a page, well it’s time to give up and go to bed. I don’t know why, as other people say they can see them with their eyes open, but I only ever see lights, when I close my eyes. Once I was kitted up with eye mask and ear plugs, I lay down to find that it was brighter inside my mask, than it was outside it. Ribbons of light were flowing from top to bottom, some coloured, other were just bright. Seeing odd things when my eyes are closed isn’t unusual, in fact, it was the first signs I was aware of when my right eye was affected by, macular degeneration. The best way to describe it would be to say, it looked like a miniature petri dish filled with live cells, all wriggling and squirming, splitting and dancing, right in the center of the surface of my eye, but only when my eyes were closed, unless, I tried to concentrate on it. My vision wasn’t noticeably different at first, then the blind spots appeared. They were small, all in the exact same area as my moving friends, it was a bit like looking through a piece of lace. My peripheral vision was fine, it was just that central area, and it caused huge problems, as my right eye, had always been my good one, I am short sighted in my left one. If I were to close my left eye now, I can no longer read at all, the lacy spaces once allowed me to line up a clear area and scan with just that spot, but the clear spots have shrunk. Having optical neuritis on top, apart from triggering headaches, just makes everything harder as what is still normally good, is then blurred.

I was so tired, and felt so sick, that even though my skin was crawling with life, that once I relaxed a little and demanded to sleep, I did. An hour of rest and another of sleep, made a huge difference, actually, far more than the whole previous night did. I was a long way from perfect, but I was awake and the headache had gone. I hate headaches, they somehow have such a devastating effect, despite the fact that in the bigger picture, they’re nothing. I have always wondered how come I even feel them, when you consider how well my body is protected from pain, by the mass of tablets I swallow each day. Either, they are high on the migraine scale and I just don’t know it, or, just like burning yourself, something always gets through.

I have to admit, that yesterday I was feeling rather sorry for myself. It was one of those days where it didn’t seem to matter what I did, my body was determined to make life hard. I guess, that in reality, I was quite simply worn down by everything. It isn’t normal for me to feel that way, I am normally so good at keeping my life in perspective, just occasionally, I fail, and when I do, I fail totally. It’s nothing like falling into depression, but yes, I feel down. Even I get fed up with the whole thing, and just want to scream at the world, “This isn’t fair”. Nobody ever said it was, nor have I ever believed it is, but what life deals out to us, we just have to accept and get on with. I suppose, that I am entitled to just every now and then, feel as though I’m being picked on. Today, well I don’t feel that way at all, today, I am back in my normal stride and the fact my body doesn’t understand that when air or material touches it, that that is what it should feel, not fire, creepy crawlies or numbness, well that’s just the way it is. Not once since we redid our bathroom and removed the bath in preference for a really good shower, have I missed the bath, today I do. I suddenly had a desire to lie in warm water, I just have this feeling that warm water might neutralise the sensations. That there is a possibility, that if my body was surrounded by something it’s not used to, that it might just enjoy it, accept it and stop, feeling what isn’t there. Who knows if it would work or not, it’s just a notion. Maybe, it’s part of a desire I’ve had in the last few days to go swimming, something I used to really love, but the chances of that, are even less than a bath.

I’m not one really for dreaming about the impossible, but I remember once sitting thinking about winning the lottery. In my head, I designed my ideal home, not overly lavish or even big, I’m not that sort of person. But the one thing I wanted, even more than a house I could live in, in a wheelchair, was an indoor swimming pool. Although, I never had the opportunity to even try it, as all the swimming pools in Glasgow are miles away, or require expensive memberships, but I’ve always believed the swimming would help me. Even now, despite the fact I can do little, I know I could still swim and if, for nothing else, the exercise could change a lot. I know it’s a crazy dream, especially as I don’t do the lottery, but I guess we all need our dreams. Even though it was many years ago, I still remember it, right down to the colour of the tiles and ferns I wanted growing on one of the walls. The rest of the house, I don’t remember a single thing, just that one room. It’s odd the things we remember.

Even without a swimming pool, there are some bright points, this morning, my eyes have settled, and my vision just that bit better. My body, well, unfortunately, it’s still my body, despite the fact I would happily give it away, as my nerve endings are still on hyper mode. I just keep hoping that today, or tomorrow, or even the next day, I can say I have silence, even in the smallest part of me, that’s my only goal today, just to find one. The rest of it, it will unfold as it chooses.


Please read my blog from 2 years ago today – 29/12/2013 – Zombiefied

It’s one of those strange days, one where I know what I should be doing and I really don’t feel I have the energy or need to actually even start on any of them. I’m drained, quite simply the past week has……




The visit

Good morning world! don’t know why just felt like saying that. I am sat here at 9:30 in the morning all sorted for the day, hair done and everything, why? Simple, Teressa is on her way to spend the day with me. I haven’t seen her for two years, something that should change now that she is in the UK to stay but with all her settling into a new job, new city, new flat and organising a wedding she really hasn’t had a chance to take a long weekend and make the journey north. Today as you might be able to guess is going to be a day of silly girly talk and mother, daughter banter. I have often thought that calling myself a Mum really isn’t right as I have actually spent so little of her life with her, with her father taking her to New Zealand when she was 12 my Mother roll ended, it took me two years to find her, but even then such a long distance relationship has been difficult. It is only when I sit listening to my voice coming out of her mouth, that the similarities and my contribution to a wonderfully daughter is clear to me.

One of the things I really need to discuss with her today is the reasons she wanted so badly to return to the UK, I have been worrying probably wrongly, that she is back as she is worried by the distance between us due to my health. If she answers that it is homesickness for all her family in the UK then I will be content. I have this horrid niggle about her reasons and I really hope that I am wrong, I would hate to think that she through away her life in America just for me, as I have said to her many times, I am a big girl and I can look after myself, probably not totally true these days but true enough. I don’t know why but I have always had a problem with people doing anything on my accord, that includes everything that Adam now does for me, my independent streak is more than a mile wide and always has been. I have accepted now that Adam does what he does because he loves me and is happy to take over now I am not able myself, but it isn’t always easy to watch him doing the housework, something he has done piles of in the last few days, not because I asked him to but I think because he knows that if I was able bodied I would have done the same before she came to visit. I seem to find it harder to think that Teressa would be doing the same as I have never asked anything of her because I wanted her to have her life not mine.

I am going to keep this short today as I still have a couple of things I want to try and do, well it’s my place to add the final small things that will make me and her I hope, happy to be here. I expect tomorrows post will be a long one with lots of things to tell you. For today I have upped my painkillers so that I have enough peace to enjoy my day with her and by playing with another one that will hopefully keep me awake through out the whole day as well. This day has been long looked forward to and I want to enjoy all of it.