Here’s to tomorrow

I’m cold, the internet is once again causing me huge issues and I desperately want a shower, and as I can do nothing about any of them, it’s not the best start to the day. Waking up to a bedroom that was so cold, I didn’t want to get out from under the covers, isn’t really what I would expect at the end of April. At first, I was telling myself that it was just me, but the thermometer confirmed that the weathermen had been right with their forecast, a touch of winter has returned. In this house, it’s a huge touch, even when they get it right, they still somehow manage to lie. Yesterday, my internet service was rock steady, today, it has already been down for nearly an hour. I am really now at a lose, other than ripping out all the wiring and buying a new router, I don’t have the slightest idea left, as to how to fix it. And as for the shower, the new one is due to arrive today, followed by the plumber tomorrow, so we’re getting closer, but I lucked out there as well. None of which helps me at all, at this very second. I guess it just shows that all of us, healthy or ill, are always susceptible to outside forces, that we have no control over. I might be feeling crappy because of my health, but there is just as much a chance, that all of the above, is just pulling me down in a perfectly human way, something, that is actually very easy to forget.

Being ill, I know for one that I often forget all of that. It is always easier just to say that it’s the fault of my PRMS, or that maybe I’m just not quite getting enough oxygen. I feel rotten and I have a resident reason to do so, so why look any further? Why even allow for the possibility that it is something else altogether? No, it’s just easier to blame my health. Let’s face it, if you hadn’t had a shower for over a week, how would you feel? Yes, I’ve kept myself freshened up, and an extra layer of deodorant works wonders, but now that my hair is starting to stick to your head, well it’s not the best. Adam has offered to help me, but trying to lean over the sink, while he pours water over my head, just isn’t going to work. My body won’t bend that way, and the pain that it would cause me, well I’d rather my hair went dirty for another day. Logic, is one thing, reality, is a totally different. This is where being housebound really stinks and in more than one way. Anyone else would be able to deal with this situation with ease. Even if you didn’t know someone to ask, if you can use their shower, well there is always a swimming pool or a spa, you could visit, somewhere to go to get clean. I’m stuck, I can’t go anywhere.

The first thing I did when I got up this morning, was to light the fire. I couldn’t shut the living room door to keep the heat in, as I was waiting for the delivery of the shower. I knew that without a doubt, if I did, the buzzer would go and I either wouldn’t hear it, or I’d take so long to negotiate the obstacle course in my wheelchair, they would be gone, by the time I reached it. I so wish that the intercom was here by my desk, but it’s not, so I had to let the precious heat from the fire filter it’s way around the house. Is the picture starting to form, add in now the fact that my computer is frustrating the hell out of me, and life is just peachy.
I feel rotten, take your pick which is it, life or my health? At a guess it a good mix of both, but it’s taken this extreme example of my life, for me to start questioning more deeply, just what might be making some days harder than others. As I said, it’s always easiest to blame the obvious, the condition that is causing us pain, that we’ve lived with for years. Sometimes, we just have to accept, that like everyone else on this planet, life gets us down too. Those days when our tablets just don’t seem to be working as well as normal. Those days when we’re tired, when we don’t have the energy that we need, might just be being made harder because something else in our life is wrong. Just because we are ill, doesn’t mean we suddenly have become immune to reality. If someone in perfect health, was sitting here instead of me, totally unable to change a single thing I have written, I’d put money on the fact that they too, wouldn’t be feeling exactly at their best. The problem with reality is, just like catching a bug, if your already weak, it’s going to hit you even harder.
This last week would have tested most people. Yet, I am still expecting myself to be superwoman, despite the fact that I haven’t even been equal to her little finger for nearly a decade. Why is it, that that is so hard to accept? I suspect that I am no different from anyone else in my position, somewhere inside the mess that life has turned me into, I still can’t fully accept, that I’m no longer the me, that I once knew. Yes, I’ve accepted my condition, but that’s totally different from accepting that the core me, has had to change as well, and that’s really hard to do. Unlike someone who is facing old age and says that inside they’re still 20, accepting that your entire life has been changed by illness, so much so that the simple everyday pressures of life, are enough to actually make us feel worse, is a real biggy to get our heads around.


Please read my blog from 2 years ago today – 29/04/2014 – Breaking the monster

There is something very odd about reading your own words back, especially when they were written a couple of years ago, it is like looking at yourself through someone else’s eyes as you had totally forgotten every word of it, but it is still familiar. I don’t read all the posts linked at the bottom of each page, just glance through them normally, but reading how I described things that were relevant to me at the time, is enlightening. I realise just how we all change, even over such a short period of time as two years and even when you are in your 50’s, when you would expect the changes to have either stopped or slowed down at the very least. I know that every bit of information we add to our knowledge daily has to change us in some way, that is just logical, but the fact……

One day on

My plan that I would just go to bed yesterday afternoon and sleep deeply for a couple of hours turned out to be just getting a little rest for an hour. All yesterday morning I found myself having what I have heard others describe as body shocks when you are perfectly still and happy and your entire body jolts just as thought a sudden electric shock has passed through you. To date I have had them just occasionally and like every other person on the planet every now and them just as I am falling asleep, not yesterday, I think I had about 12 from the time I got up until it was time to sleep again, but then they kept happening, again and again, making sleep totally impossible. I lay there for an hour just feeling all those same sensations as kept me awake during the night, starting to drift and bang, my body shook from top to bottom and I was wide awake again. It was pointless so I just gave up. I didn’t think about it until yesterday afternoon but a good way of describing this increasing body pain and the sensations that go with them, is to imagine that every sense you have is turned up, every sensation is heightened, once a nerve is triggered it keeps relaying that sensation over and over, each time getting slightly less unless triggered again, when it lifted in intensity from the time before. Hypersensitivity to the point of almost feeling your blood passing just below your skin, a constant buzz inside every pore of my skin, pain, heat, touch, all echoing around and added to by the self-created nerve orchestra in an never ending field of sensation. Like everything else you get used to it, but just like everything else in life, at times, it will drive you to the point of distraction and beyond.

For a night time, that had taken so much out of me and having spent so many hours with nothing to think about other than what my body was telling me, to my surprise the rest of the day was incredibly normal. But that is life with a chronic illness, it doesn’t stop just because your body is driving you nuts, or you feel as though all you want to do is scream until you can’t scream anymore, life has to go on. The world and the things I do in it, to maintain my existence had to happen, I have to walk around, I have to fetch food and drink, go to the bathroom, sit here typing and doing what I do, these things don’t change. If I stopped every time that I couldn’t take any more, I would have given in a long time ago, so I continue, I do what I have to and more, because that is what life is for all of us and that doesn’t change, even for me.

I remember when I was having my chemotherapy I met on my very first day there a lady with MS and her husband, he had to be there as without him, well no one would have been able to understand a word that she said. I feel bad now that I can’t remember her name, but it was the only time that we met, she was sat in a one of those wheelchairs that totally support the user, with her head dropped to one side leaning on the head rest. I sat there talking to her through her husband, I put my questions to her, but he had to answer. As she spoke I remember seeing the saliva dripping from the corner of her mouth and her husband constantly dabbing it away for her. One of the things that I remember was that this was to be her third session and only my second, but she raved about how big a change it had had on her and just how much better she was. No matter how hard I tried the one thing I hoped that didn’t show in my face, was just how horrified I was that MS had managed to do that to her and I longed to ask, but didn’t, just how bad had it been before. We spent about an hour together and I realised then what was ahead of me and that all that separated us was time, but she still hadn’t given up, she was still getting on with what had to be done. It was something I had already made my mind up on, but seeing someone who was my future still living and still not ready to give up, confirmed that I hadn’t got it wrong, life has more power than we think and life won’t give up on you, if you don’t give up on it.

I think it is the one thing that those who are fit and healthy get so wrong about life with chronic illness, it isn’t about the illness at all, it all about living, just as it is for every single one of us. Even when our bodies are doing their best to make life hell that is the one fact that is actually the most important, living, living that day and the next and the next. I was dreading actually going to bed, but I was so tired that when at last I could say this is the time, this is the whole point of today, that I didn’t care what annoying games my body wanted to play, I had to sleep. I did. Now, I can’t remember lying there for any length of time at all, just long enough to get comfortable and I was out, this time for the whole night, no interruptions, no breaks, just glorious sleep. This morning, well it is just the same as yesterday, the difference is that I am awake and that bit more able to get on with things, the pain, the sensations, the distractions, they are all still there as they are every day, but today I am awake, so today I really get on with living, not just the functions of it.


Please read my blog from 2 years ago today – 26/05/12 – Who cares if you don’t know

Most women I know think that they are better at multitasking than men, well I have seen several documentaries that prove that in general to be wrong. I don’t believe them, sorry but I have all my life been able to do loads of things at the same time. I remember my first husband could get his head around it and used to challenge me from time to time, I would be sitting knitting, watching TV and browsing a magazine and he would suddenly demand to know what was just said last, the storyline…..