Location, location, location

It is amazing how just losing about an hour and a half of sleep, can leave you feeling, as though, you haven’t slept at all. Three things put me into this position, I woke up needing the loo, and when I returned to bed, Adam decided to snore and snore and snore………. The third one, that was my stomach. When I first climbed back into bed, a bed where somehow Adam a had stolen the duvet in the few minutes I had been gone. I lay there trying not to listen to his snoring and I clearly succeeded, falling into a light sleep, only to curse each time I was again aware of the noise. I think it was on about my third time of looking at the clock, that out of nowhere, the pain began. It is truly rare that my stomach with start hurting during the day. I don’t know why, but vertical seems to equal stagnant, when surely, it should be the other way around, but as it’s my stomach, it’s not really that surprising really, is it. Suddenly, I had two sources of annoyance and sleep was beginning to look impossible, then suddenly, there was the alarm sounding again. From that very second, I knew I was exhausted, it’s not just unfair, it doesn’t add up in a logical fashion either. Adult humans are supposed to sleep for 8 hours per night, I had already had nearly that number when I first woke, and I had managed to get another hour and a half, but exhausted, was still the result. I’m not saying that I ever wake up full of the zest for life, but I am normally awake.

Not only am I half asleep, it is a day of noises, those sounds that make you jump as the appear from nowhere. Part of it is down to the weather, as there are all sorts of things rolling up and down both the pavements and the road, but that only explains what is heard from outside. We don’t normally hear our neighbours, just the occasional session of hammering from next door and the vacuum cleaner from upstairs. Normality is normally pretty much silence. Yes, I know we are extremely lucky. Complaining would then seem somewhat churlish, but I’m not complaining, just intrigued. If I didn’t know better, it sounds like someone is sat in the middle of next door’s living room, chucking marbles at the wall in a random pattern, going from ceiling to floor and over the entire length of the wall. Each crash is separated by several minutes of silence, total silence. There is no sound of whatever it is hitting the floor, just these odd crashes on the wall beside me. Every single crash makes me jump, between my nosiness and the noise, I am actually getting rather fed up with it. Neighbours shouldn’t be allowed to do anything totally odd, without first notifying any neighbour who might hear it. If I were fit and healthy, I would be tempted to find something long enough, to tap back on the wall at them, at every point I hear them doing whatever it is. Mind you, I would be worried about damaging the plasterwork, as a light tap wouldn’t be heard through the depth of the wall. A thought that makes their odd behaviour, even odder.

It is actually the fact that we have such normally wonderfully quiet neighbours, that as my health declined, I was actually quite happy to remain where we are. Where you live, who are around you and what your life contains because of it, are important to everyone, but even more so when you’re chronically ill. I couldn’t imagine being surrounded by houses full of screaming children. Don’t get me wrong, children have to be children, but when you desperately need to sleep, or you are in a high degree of pain, they are the last sounds you wish to hear. When we found that we had bought a flat, probably at the worst stage of my life possible, we did talk about possibly moving. This was our first home, at diagnosis, we hadn’t even finished redoing the interior, or even had we fitted the kitchen or double glazing. If anything, we would have lost money, if we had tried to sell then, money we couldn’t afford to lose. We had a lot of work to do before I couldn’t and then we could think again. It was wishful thinking, it’s like so many things in life, you never think that life is going to run away with you. I thought, clearly wrongly, that it would be about this point in my life that housebound would be closing in on me, not 8 years ago. If that had been my reality, then things might have been very different, but the second that door closed on me, it also closed on the possibility of moving forever. Being housebound, highly unlikely of being able to secure another job should as actually happened, I was made redundant, meant, no new mortgage on a new property, especially not in the midst of a recession. The world and my health had conspired against me.

If we had moved into a ground floor flat, which actually had flat access to the street, hard to find in Glasgow without your living room windows also being open to the street, then maybe, housebound wouldn’t have happened at the second that it did. At most, though, it might have given me two more years of going out and about, but for what purpose, I can’t think of any that would have tempted me. The facts are simple regardless what anyone says, yes, I might have been able to have gone out to find another job, but no one, would have employed me, not in a wheelchair with a degenerative condition. All these things and the planning of our lives is made totally impossible, because the medical profession, can’t and won’t give us any idea or what our future might hold for us. At best, we have to make educated guesses, not too difficult if you have a known condition, if I had RRMS, PPMS, SPMS although no one knows for sure, planning on the general level wouldn’t be too hard. There are plenty of case studies, loads of information which if you collated it, you might not be too far out. But I don’t have any of them, I have PRMS, a condition that because of it’s rarity, other than being told my Neuro that it is, in general, more aggressive, there wasn’t anything else he could tell me.

I would without a doubt say to anyone who has just received a diagnosis of MS of any sort, to think carefully about where you live. It doesn’t really matter if it is bought or rented, take a good long hard look at it. Could you manage if you suddenly found yourself in a wheelchair, could you cope if you were housebound? Is everything from the front door to the toilet accessible and useable for your future you? If not, could they really be changed for something that would work for you? I know those questions sound obvious, but my point isn’t really the questions, it’s the fact that you have to ask them and you have to answer them honestly, and not put it off until some point in the future, as our future is always tomorrow. My life flipped totally over night. I went to bed able to cope, still going out to work and living a normal life, and woke up unable to use my left hand at all, which meant I couldn’t use my wheelchair. I was instantly housebound and there hadn’t been a warning, other than a slight weakness for a couple of weeks before. One more thing, if you do own your home, if you still have a mortgage to pay off, consider selling and moving into a rented home. It may sound nuts, but if you are the main breadwinner, and if you lose your job, the government won’t help with mortgage payments, they will with your rent. Thanks to the bizarre system for allocating homes for the disabled by the state, if you are renting already, your chance of being rehoused is much higher. I have been told directly that because we own our home, the fact I can’t get out of it, nor the fact that our home is unsuitable for a wheelchair, are a reasons, to be rehoused in disabled housing. We are trapped in every direction.

Luckily, we totally love our home, it supplies everything that we need and it’s blessed with good neighbours, who keep themselves to themselves. We live in the middle of a city, but we are blessed with living in a quiet area, something that is just as important as our neighbours. When your health progresses, your patience and those wind-up levels become fragile. If there is one written rule about most autoimmune conditions it is they respond badly to stress. Being assured of quiet neighbours isn’t a guarantee for any of us, but they can make a huge difference to our health. Luckily, mine seem to have stopped throwing marbles and peace is restored, mind you, what is it they say about famous last words.

Please read my blog from 2 years ago today – 02/12/2013 – Disappearing

When you have time to sit and think you find yourself going back to things you thought were long gone and long forgotten, but I can’t help wonder why it is I think more of my childhood……

Permisson to do what I want.

The start of an other day and once again the best alarm clock in the world woke me up, my bladder. This morning was the third in a row that I woke just after 7am, so not terribly early but I had actually given myself permission to not get up when the alarm went off. I have for years believed that my body has been part of a conspiracy to make life difficult and it supplies yet more proof. There are always occurrences like this for all of us, those moment when you have made your mind up to do something and then then something appears to stop it happening. Wouldn’t it be nice to decide that you are going to do something and then life let you, no barriers, no phone calls, or emails, it just all goes exactly as we plan. Nice dream, but be assured that is all it is going to be, unless of course your plan was to do the same as every other day in your life, reacting to others rather and doing what we want. I didn’t actually realise just how much of our lives are totally driven by others until I stopped working, there was this huge void in my life, not just because my work day routine had gone, but the emails stopped and the requests to do the impossible ended. Strangely the thing I have found harder than anything throughout my life is to just do what I want, not just without interruption, but without influenced from anyone else either. Think about it, when did you last do anything that you weren’t taught the way how to do it, or your time wasn’t set up around the needs of your friends, family and work. When was it you truly had free time, not time made by you cutting time give to something else, but real free time.

The stupidest thing is we all know that time to ourselves is actually important but our lives are set up in such away that it is almost impossible. Even now when I spend so many hours actually not physically with other people, I am guilty thanks to this and twitter of actually not doing something that could be seen as relaxing. It’s not work but believe me it can be mentally extremely draining raking through everything I feel, do and think. Several people in the last few days have said that same thing, that I have been through so much in the last few months but here I am still day in, day out, ripping myself into bits to make sense of it all. I know I do need time out, but I also know that I have to keep working on this, but I also admit that may be I need to take a look at my daily routine and build in two things that just aren’t there, free time and flexibility. As I said in the last few days, I am in no doubt that my health has taken a large down turn and that the more I sleep the better I feel. How I set out those time periods of sleep into my day and how do I set in also, time to do nothing if that is what I want at the time? I need to plan this, as well I can’t do anything with out a spell of analysis and to be sure that I have covered all the bases, yes I know that means I will be setting up barriers, but I can’t work without them, I don’t think anyone can.

The mad thing about life that I have learned in the last few years is that although stress destroys us, we can’t actually live without it. If there is no stress from others, or work, or family, we will invent it by looking at our homes and demanding we clean them, or redecorate, things that really don’t matter as much as we think. Without them though we wouldn’t have that free stack of stress there to use when the rest of life removes it. Many of the conditions I have now, for which there are no cures for all had their start point in stress, they have made me slow down, to stop and to think, things we all should have been taught to do, rather than how to add more stress. So I am now sat here unable to do the things that stressed me and at last not actually stressed by them, my health has taught me eventually that stress over tiny things, is stupid. I now look at them and I know they are what they are and does that matter at all, no. I shouldn’t have had to go through all this to learn one simple lesson, slow down and relax, life happens regardless what you do. On paper I have all the time in the world, in reality I have no time at all, it is running out on me.

I will put money on it that someone reading this will be saying but she must be stressed out, she is dieing. That is actually the daftest bit I can’t get my head around it, that information doesn’t add stress it removes it. Somehow knowing that it is now out of my control has allowed me to move on and yes it has been the catalyst into making the changes that I am in the middle of. This is now my time and if I need or want to spend a day in bed, well I will. I doubt knowing me that will actually happen for a long time, but I am giving myself permission to do it, if I want to. I am no longer going to let my life feel as thought there is this stack of things that are waiting to be done, if I can’t do it that day and it’s not important, well ditch it, not move it along onto another list, just get rid of it. This is the start and I have loads to do right now to make the changes, the space to actually live without unneeded pressure and stress. I know this is right for me, but I have a feeling there are far to many out there setting themselves up, living with stress they think the can manage, but will mean they to will be joining me with illnesses that will one day will steal all your choices.