Showing the invisible

I managed yesterday to catch up with myself, I even had my shower and a good afternoon nap, keeping everything I did grouped and making sure I didn’t waste any more energy than I had to. Again it was crash time at around 8, but I managed the last hour, not struggling as I have the last few days, but tired enough that if someone had lifted me up and put me in bed, I would have slept without difficulty or argument. I am managing to remember so far the fact I have to take my meds at 8pm, probably because I am continually thinking about it due to this exhaustion. What I can say without the slightest doubt is that over the last few days, I haven’t been awake early, nor have I woken and felt bad quickly, that hour shift seems to be giving me enough drugs in my system to allow me to make through the 12 hours without pain breakthrough like was getting a few weeks ago. The reason I moved the time seems to have been the right move, now all I need to do is get my exhaustion in the evening sorted out and well, life will be sorters again. This chronic illness business would be simple if it wasn’t that so many of my conditions weren’t progressive, life has turned into a constant tweaking of this or that, just to remain the same, in pain and tired.

I have found myself staring at my hands a lot in the last couple of days, I know it’s just something small and silly, but it is putting a smile on my face. I mentioned that I had started growing my fingernails as having a thumbnail was making it easier to pop out tablets from those horrid blister packs. Well it looked really stupid, have a long thumbnail on each hand and the rest of my nails short, so I started to grow them too. Years ago I had very long and precisely manicured and beautifully painted, I had a black background with gold designs on my nails in 1986, years before I had ever heard or seen anyone else with such decoration and I painted them by myself. My nails remained long right up to the time I had to start using a wheelchair, that was the end of them, as I couldn’t manage to push myself along without digging my nails into myself, I simply couldn’t grasp the wheels well enough. Around the same time I also found that they were flaking into layers and breaking far easier, I thought that it might be something to do with my drugs, but I couldn’t be sure, between the two things, well the nails had to go. Right now my nails aren’t that long, but they are the length most people would be happy with, unpainted but buffed and strangely it makes me feel just that little bit more like myself, slightly more groomed and presentable. They don’t seem to be breaking into layers as they did before but my meds have changed a lot over the in between years, so my theory may well still be right. To be honest, I can’t think of anything else so stupid and small, that I have felt so chuffed with for a long time, stupid it may be, but it’s good stupid and that is all that matters.

I know that I have been writing about the spasms in my chest a lot in the last few days, but with this interview going ahead on Friday, I have had to focus on it all, just so that it is all clear in my mind for when the journalist arrives. I have this great fear that my mind is going to do it’s favourite trick and ditch everything just when I need it. I held off saying yes to doing this for a few days as I had a lot to think about, it is one thing writing, quite another opening myself up to a video camera and questions that I don’t have control over. At it’s worst I will turn into a stuttering wreck who has to keep stopping because I just can’t find the words, at it’s best it goes smoothly and the world sees me at my best, in control and able to come across just like anyone else. Invisible illnesses are a double edged sword to live with, on good days people wonder what you are making a fuss about, on bad days pity is poured over you, neither are nice to live with and neither are a true depiction of any illness. I picked the time of 11 am for the interview, I picked it because I think it is probably the time of day when the best balance will be found. I also picked it because I know that I will be more at ease knowing that I will have written my blog and put a big dent into everything that I do here, I know without a doubt that I wouldn’t be able to relax at all if all that is in my mind is how far I am falling behind with my day.

Everything is about balance, I want to show the world just how invisible but how crippling illnesses like COPD and MS are, get it right and I know it will have the impact and reassurance I want to give to those at the start of the whole thing. I want it to be something people will recognise and feel hope for their future not dread and show them that life doesn’t end just because of a diagnosis, we all still has a lot of living left to do and a lot of happiness still to be found.

Read my blog from 2 years ago today – 13/08/12 – I remember the WAS

There are so many things that happen day to day in our lives and we don’t really notice half of them, it is often not because we don’t care or they don’t matter, more that there is a limit to what we can actually deal with mentally. Imagine that that is no longer the case, and somehow your mind is missing out the important things as well, that your ability to holding to a line of thought or idea, is slipping,…..

1 thought on “Showing the invisible

  1. I can’t imagine all the pain you go thru, I have fibro — the doctor said — and so does my sister, but we can’t have it too bad, because we are both fairly active, in fact I ride bike often.

    Riding a bike hurts for a while, but somehow after the ride the pain lessens all over, like a good pill.

    I feel so sorry for myself for these aches and pains I have, strong pains until I get up and get my coffee and get moving, then less.

    I wonder — like you must wonder — why? WHy do I have these pains, some people seem to have none, then I find people like you who have much much MUCH worse. Apart from the pain, I have to wonder WHY?

    I’m not sure.

    And I bet you wish you could just have one day — (I wish for a week cause Im greedy) of feeling no pain. Just to remember, just to see the difference.

    Please let your followers (I follow you on twitter) know where we can read the results of the interview on Friday.

    You are on my mind a lot. I know that doesn’t help.


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