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……