A gap in the fog

It’s odd how you can feel so good and yet so bad at the same time. It’s been such a strange week, my brain has been the clearest it has been for a long while, but my body has been taking every opportunity to show me what life with chronic illness is really about. It’s perfectly normal for me to be wondering around totally uncertain of where I am going or exactly why, or just to be sat here staring at the screen with no idea of what I am supposed to be doing. Don’t get me wrong it hasn’t miraculously vanished, if only, it’s just the fog doesn’t seem quite so thick. I have no explanation as to why my mind is that tiny bit sharper, it’s, really an odd feeling especially as I haven’t felt it for a long time, but I feel it. The rest of me, well it all feels as though the improvement in my mind has been paid for by a down step in the rest of me.

Every day in the past week I have been fighting with a body that just doesn’t want to behave. My legs have been a constant problem, letting me down over and over again. I have to date been good at covering any issues, but Adam has twice spotted that I was unable to move simply because one or both of my legs weren’t able to take a step in safety. Once again the worst point is when I first stand up. I may have made it from sitting to standing, but there is either no way of taking a step or I get a spasm in my lower back that shocks me into inactivity. It is as though I am frozen to the spot and I have to hold onto something as the pain has a habit of shooting right through me. It honestly isn’t possible to move at all, I have tried in the past and the result is either no strength in my legs, meaning that I am either in danger of or do actually fall, or I cause the pain to get worse. Neither are exactly my first choice. I can’t even sit down again, all I can do is stand there and wait for it to pass, as it always does. At times, standing up has even triggered a similar effect in my arms, which is really not helpful as I honestly need them to steady myself. That usually only happens when I have been sitting on the settee, hunched forward to make it easier to breath.

This whole week has been one without strength. I have lost count how many times I have been defeated by a ring pull, or even more pathetic been unable to remove the paper seal over the top of the milk bottle. The most stupid things have become a battle zone. Add in my normal poor dexterity and at times I have just wanted to give up. My left arm has been weaker than my right for a long time, but both are of little real use at all just now. A small package arrived for me the other day, it arrived in one of those white padded envelopes which have a red stripe to pull to open it. After four disastrous attempts, I had to take the scissors to it, it took me several more attempts with them, simply because I didn’t have the strength to even use them. Once through the envelope, I was almost at screaming point to find the enclosed item, inside a thick sealed plastic bag. On the scale of pathetic, I felt as though I had fallen off the end. Even on those things that don’t take strength at all, I have struggled badly at times. You don’t think about strength and things like feeding yourself or typing, but when your muscles fail, it affects everything.

The one thing that no one but me could ever notice is my eyesight. Having said that, I think Adam did spot it the other day. I was simply trying to read something of the TV, sky has this horrid habit of backing everything in blue then putting small yellow or white print over it and even with my glasses, I now struggle big time. Experience has told me that the option can’t really help anymore than they already have. I can’t use my glasses here at my PC as if I do, they turn the screen into a worse fuzz than it normally is. I do have glasses to use when sat here, but they mean I can’t see the TV at all. I haven’t been able to make out faces on the TV that well from sitting here for ages, recently they have vanished even more. Now if two people have similar hair, I have no idea which is which any longer. Bifocals just don’t work for me so I am left living in a fuzzy existence whatever I do.

Everything just seems to have taken a step-down and has managed to make itself known. It’s not like I have suddenly developed something major or new, just everything is that bit worse. My chest is tighter, my breathing more difficult, my stomach is once again causing pain that stops me dead and just because it can, it takes my breath away. The Psyllium may be letting the contents of my intestine move forward and eventually out of me without effort, but it hasn’t dealt with much of the pain. It doesn’t matter which part of my body that you might choose, all the pain levels are just that little higher than it has been for a while. It’s not like I want to dive into my Morphine for a booster, it’s more like my slow acting Morphine isn’t quite holding it at bay. Every sensation that can be felt has triggered at will. Pain, burning, pins and needles, numbness and anything else you can name has appeared in the past week. All of this together has been the reason behind the searching I have been doing over the past few weeks into what it is that drives me and how I feel about it. It has had a really positive effect, one that both Adam and Jake have noticed and found it so marked that they had to mention the fact that I am bright and chirpy respectively. It doesn’t take a genius to work out where that has come from. My mind is once again at rest about where I am and what is happening to me. As I said, “It’s odd how you can feel so good and yet so bad at the same time”. It is odd, but when your mind and your body are in such totally different places, understanding it isn’t that hard.

I really did need to recenter myself if you like. It’s too easy to just forge forwards, to not questioning what is happening or checking how we feel about it. I hadn’t stopped for a while now and just asked the simplest question of all “Am I happy?”. I wasn’t, I was letting myself disappear under the pain and trials of my life and I wasn’t listening to me. Not my body, I listen to it all the time, but I wasn’t listening to me and I was vanishing under it all. Yes, I am brighter, I am more chirpy because I am here again and in control again. I know where I am going and what is happening, I can’t control that, but I can control my happiness. There are so many elements required to be happy, being in control, having plans, setting goals and having achievements and not one of them is affected by our physical pain, weakness or strength. All of them come from our mental well-being, something that is easy to ignore, especially when you live within a fog.

Please read my blog from 2 years ago – 01/08/2013 – Just not getting there 

6am, I was awake, I am never awake that early but a pain in my left heel was screaming at me and 2 and a half hours later, well it calmed down but it is still there. I am making a huge guess here, but I think it is pressure point pain. I have had spells of it before but never in such

Eight and counting

Well this is it, the first day of my 8th year being housebound, I never have trouble with the date as I lost use of my hand the first day back at work after the new year. I had managed to make it into the office, just to be sent home a few hours later when it became clear that having just one hand and being in a manual wheelchair, just doesn’t work. I was though extremely lucky as I was already totally connected to the office from home and more than able to work from here for several years, on one level it feels like a different life time, on the other, well just like it was yesterday, but life is like that. It doesn’t matter what life throws in front of me, I somehow manage to make it work and to move on and I am totally sure that that is the same for the majority of the human race, the difference is that most don’t have that type of hurdle put where we can do nothing, but stop or jump. So many people send me messages saying they don’t know how I manage so well, or stay so happy, well I honestly believe that there is no secret and that every single one of us could do exactly the same, we just have to make ourselves. Even to me though, 8 years is starting to sound a long time, somehow a lot longer than 7, I guess we all have milestone numbers where it changes from everyday, to something of mark, we all reach those through out our lives as we age, so don’t say you don’t know what I am talking about. My own age for some reason has never really bothered me, not even turning 50 made me feel badly about myself or life, well other than the fact that the NHS sent me through a bowl cancer testing kit that arrived on my birthday, that did put a slight downer on my day. It’s not my age that I have always found difficult, but my daughters, it doesn’t matter what her age has been, from the day she entered double figures I didn’t want reminding, as it instantly made me feel old.

If something is going to make you feel old, I would have expected it to be my health, yet strangely even when I wake as I did this morning, so stiff that just getting myself vertical seemed like an enormous effort, then to find that I could only move in a way that I would expect someone in their 80’s to move, I still don’t feel old. PRMS and the other members of my health gang have really done a good act on my body when it comes to giving me the appearance of premature ageing, but this is where being housebound becomes a blessing, no one can see me. I know that sounds incredibly shallow, but there are things that none of us want to play out in public sight, the first for me was my staggering, the second my walking stick, strangely my wheelchair proved to be the opposite as I suddenly felt more normal, more agile and more alive as I could keep up with and even beat the world around me. Now though I couldn’t manage that, I simply don’t have the strength to push myself in my chair, if I had an electric one, well then yes I might manage out there for short spells, but out of a chair, I would be totally mortified and totally unable to cope, not just physically but also mentally. I have no doubt what so ever that the biggest element of surviving any chronic illness is our own self esteem, if we don’t see ourselves as part of, or the same as something positive, we will get worse and we will struggle more. That is why I say there is a point when housebound is actually the best thing that could possibly happen to us, but the timing is different for all of us and so personal, that I wouldn’t like to be the one to work it out for anyone. Here in my home the only person I have to compete against is myself, so what ever I achieve, it is always my best and there for the best there is. I don’t actually go around congratulating myself with smug smiles of “I am the best”, but I equally don’t look around me and feel pathetic, which is incredibly important. It doesn’t matter how much pain I am in, how badly I walk or how fatigued my body becomes, in my housebound world, that is normal life and that normality is precious.

8 years is a long time and if it hadn’t been for my hand I probably would have managed another couple of years, it may have taken me a long time to realise that it was probably the perfect way for me to move into the disabled, housebound, unemployed world, as I did it slowly and in that order and still being allowed to protect my self esteem as I went. I know that I am both physically and mentally not the person I was 8 years ago and in many ways I prefer the person I am now, no matter how pathetic the body, or how useless the brain is compared to then, life is now at my pace and that is a pace I can deal with. Being housebound has more bonuses than most people would every expect and if something is right and allows us to carry on living in a way we can manage, well where is the bad, the scary and the lonely world that I once thought it would be, there is nothing to fear in being housebound, in fact it is a positive step when it is taken at the right time. If the doctors are right I am half way through my confinement with another 8 years ahead, that kind of makes it sound like a prison sentence, I’ve never even visited a prison, but trust me from what I know I prefer housebound as it is a positive place to be and I look forward to another 8 years of living a good life.

 

Please read my blog from 2 years ago today – 03/01/13 – No way to fight 

There is a brick wall that is now clearly part of my life. It hides well for many hours to the point that I believe I have defeated it, then bang, it’s back. I guess it is now about 6 weeks since it started and I have……

Elegant?

I woke this morning from a half dream, pulling at first at my duvet cover, trying in my muddled state to separate the sleeve of the top I wasn’t wearing from the table in my dream. I woke because this is so similar to dozens of dreams I have had before and muddled or not I recognised it, waking enough to stop myself and pull my arms back under the cover, I wish I hadn’t. When I next woke it was because I had just dreamt that somehow I had peeled a complete fine layer of my little finger nail and I was trying to give it to someone, but I had dropped it, once more I was picking at the duvet cover. It wasn’t until I had eating my breakfast that I realised that I had ripped my little finger nail on my left hand at it’s base and nearly half way into the nail. My much loved long nails, now has a problem nail, repaired with super glue, but until it grows out, it will remain a problem. I had managed it, even in my sleep, because it has grown in a really odd shape, thanks to my typing, it has this twisted shape, where I have constantly put it under pressure, especially when copy pasting, something I do a lot, from twitter to spreadsheets and back. I was warned when I went on the morphine that they often produce vivid and worrying dreams, for the first two years there were none, then suddenly at the start of year three, these stupid dreams before the alarm goes off started, not every morning, just occasionally, but I am so used to them now as they always involve something that requires me to be picking something up, which always turns out to be glued to something that I have to separate it from and the duvet is always the victim. I think it is the fact that they causes a physical action and aren’t just in my head is the part that I find most worrying, who know what I could actually land up doing.

Yesterday had passed pretty much as it had started, until I had my nap, at that point I decided to take another booster and try again just to get a little peace. I know that most of what I had gone through since Thursday is down to the kick back from my visit to the Dental hospital, this is all down to going out of the house and being stretched to my limits. I remember when I was chatting to the consultant and when I told him that going out was going to knock me for six for several days, he looked shocked, it was then that I felt that he started to take more interest in what I was saying about alternatives and ways things could be improved. I honestly don’t think that any doctor who hasn’t had someone with a condition like MS in their care, has the slightest idea of how their everyday requests, are our everyday nightmares. Most of Sunday was just as I had written about Saturday, sometimes my life is just too predictable, mind you pain and exhaustion are very much the same regardless of the day or reason. The combination of the lift in morphine and spending some time lying down seemed to make a difference, at least my gut had shut up and sitting wasn’t a constant twisting a shifting process, just trying to find the impossible comfort. Right through until about 7pm, things felt more normal and I was grateful for just getting a break. When I shifted myself to the settee so that I could see and not just hear the TV, the way most of my so called viewing is done, I once again found myself in pain. When things are frantic like they are just now, I should have been prepared for it to get worse again, the settee is just that little bit lower and to reach the table I have to hunch forward, something I do a lot, as it’s actually easier to breath in that positions, but it puts pressure on my internal bits and they don’t like it.

Settees are another thing that should really go on that list of thing we buy for all the wrong reasons, ours admittedly needs some work done on it, the type of work that if I were still working would have been done years ago, but when it does get done there is an extra item I now want changed, the hight, I want it raised by two inches. Even one inch would do really but a lift in hight would mean I could once more sit on it without being crunched, regardless of my position. I have like most of us I suppose noted that all the seats that older people choose to sit on are always higher than the modern shapes, I always thought that it was purely down to pain in their hips and knees when it came to standing up again. Now I understand that there is much more too it, yes joints are an issue to them, but I am sure that part of if is their muscles wasting, I can no longer get off the floor without an array of things to hold onto, so I know all about that. The settee has the same issues as the floor, even though it is considerably higher, I still struggle all to often to find the strength needed, it is no longer a fluid and elegant process in any way, shape or form.

That last sentence set me thinking, I can’t actually think of the last thing I did that was elegant, probably it was some fluid turn that I made in my wheelchair, I had become quite nifty in my use of it, but that’s how long ago it is. Elegance and PRMS, in fact any form of MS, don’t go together. I always made a point though that I didn’t let myself look like an invalid, I wore all the mad clothing I had worn all my life, tiny mini skirts included, wild hair and perfect make-up. Walking with a stick or sitting in a chair wasn’t the end of my being able to be me. I will take that back just ever so slightly, I did slip badly before I had the chemo, but everything about me had slipped at the point, in fact I didn’t know who I was any longer as I was a total mess. Post chemo and I picked myself up and returned to being me and getting that second chance meant I was going to do it all with style, if not elegance. I guess we all have our own look and style but I was lucking in one way, I had always loved over the knee boots, I can hear the question marks popping, the boots I loved where black sued and with the laces at the back, perfect for life in a wheelchair. I never understood until I was myself in a chair why so many covered their legs with a blanket, I thought it was to cover their withered legs, but I soon found that it is because summer of winter, your legs get cold. When you aren’t walking and your not using your muscles, legs get cold, add in the air being thrown at them flat on as you move and they chill further. High boots were the answer, just with tights in the summer and socks in the winter, I always wore flat heeled shoes, being taller than Adam I preferred not to make myself even taller, so getting in and out of the chair wasn’t hindered either. Knee high black suede boots, black tights, black knitted mini dress and a black ankle length coat, made up what I though was an elegant look, even when sat in a chair. Yes, that was my last elegant act.

When our bodies stop us living the way we had planned, I think it is essential that we at least feel good about how we look, back then I was slim so the mini lengths might not be so appealing these days and pyjamas are my every day dress, but I still wear my favourite colour every day and the splash of my waist length purple hair, just helps to make me smile. Elegant in action, I may not be, in fact floundering, wobbly, stagger lurches are closer when it comes to my actions, but if you have those touches of who you once were, they make all the difference.

 

Please read my blog from 2 years ago today – 10/11/12 – Talking shorthand

Although I won’t be attending I have received the invitation to Teressa’s wedding and it shows one of the few things that her Father and I ever had in common, the invitation is a card version of the Tardis. She may have spent the majority of her life abroad but her love of Dr. Who and all other……