I have to plan

I feel brighter today, more connected and at last starting to head back into being myself. I realised this morning that I hadn’t actually make it clear that the feeling of being disconnected had nothing to do with what they call “MS brain fog“, there is no comparison between the two, I would live quite happily with fog forever, if there it were a simple choice.

Just as I have found in the past when I start to reconnect to life, I am almost unable to stick to one thing, it is almost as though I am compelled to do a hundred things at once and I have no way to stop myself, almost as though I am in a hyper mode. If my body could manage it, today is one of those days when in the past I would be digging out ladders and all the stuff needed to wash down the walls and ceiling in the living room. Just thinking about doing something so energetic is an alien concept but boy would I like to give it a go, I may have managed to settle myself to the fact that my home will never again be as perfect as I once kept it, but it doesn’t stop me just occasionally looking around and wanting to fly into action. I can’t even manage to lean over and pick some fluff of the carpet without losing my balance, so what chance have I of doing a full spring clean.

My balance has actually been worrying me a little recently, I’ve noticed that I am once more in one of those phases where just turning my head to fast makes me feel unsteady, but so far I haven’t started falling more than usual. It is actually wrong of me to say I fall at all, well at least in the last 6 months, it’s not that I don’t loose me balance, but it’s just I have been lucky enough to either be where I can slide to the floor or to catch hold of something that stops me falling at all. The mechanism is still working but luck has been my protector. It is one of the things that I have been thinking about as now that I know I am in the menopause, OK protected by hormone replacement therapy, but I am heading into the age range where bones become more fragile. To date the worst injuries I have suffered other than a huge range of bruises has been spells of unconsciousness and some impressive removals of skin, my bones have luckily managed to bounce and stay whole, but my luck on that one won’t last forever. I did take a tumble over 20 years ago now where I went backwards down some stone stairs, at the time they thought I had only damaged my ligaments and I spent a couple of weeks in plaster. When it was removed I still couldn’t stand and I was treated as though I was an idiot, rather than re-xraying I was sent home with a stick. It wasn’t until about 9 years ago when I noticed a strange totally solid lump on my ankle and my GP had it x-rayed, that the truth was found, I did break it and it was out of line but healed, explaining the pain I kept getting and still get at times.

Back then I just got on with it, going up and down any stairs I had to face on my backside and returning to work the next day, but now, I’m not too sure how I would really cope. I have thought through a future where I need assistance to walk, be that a frame or crutches, it didn’t take me long to realise there would be a problem with either, especially the crutches. Co-ordination isn’t exactly a strong point of mine, I have little doubt that I would spend more time fighting with them as they head off independently, getting caught in places I hadn’t even seen, possibly even making it more likely that I would fall again than not. Should the damage be to one of my arms, well that would be even worse, I need them to hold onto everything around the house that keeps me on my feet right now.

Thinking about the future and trying to plan what is needed seems to be something that goes hand in hand with living with a condition like MS. In the past, I never bothered to think past the next day, not even when it came to money, or food, these days I seem to always be looking a couple of years ahead at the very least. Knowing that your ability to solve problems and find ways around obstacles is getting less and less by the day, pushes you to try and solve problems that for now can only be imagined. I know that the day will come when I won’t be able to think things through, other than the fact that my MS could close my lungs down, my biggest fear is the day that I wake up to find that I couldn’t do something as simple as just sorting myself out to spend a day out of bed. I try hard not to let it get me down and I guess that is why I try to sort things out for that day whenever it arrives as I see that as positive action, a way of making my future easier and brighter than otherwise it might.

This is still only the start of the third month of this year and already this year I know that I have slipped quite a long way from where I was at New Year. All you have to do is read back over those 60 days or so and it’s there for all to see. If I am honest I am worried about what the rest of this year holds, but that is one of the problems living with a progressive condition, it progresses, it’s speed and effect can change at any time and for no reason. For now all I can say without the slightest doubt is that its progress has increased and that I feel very different in just a very short period of time.


Please read my blog from 2 years ago today – 12/03/12 – To infinity and beyond 

I really am getting better or, at least, leveling out, as although I don’t actually feel fitter in myself, I have started making plans and working on ideas. A really good sign. The past week I have felt like doing little other than sleep or vegetable mode, right OK I know that isn’t politically correct but neither is MS and as it is my final destination, I think I am allowed.

Adam has returned to work today with his double checking that I am OK before he headed out. I don’t know what he thinks will happen just because he isn’t here. I am well past the stage of being too……

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