The Serious Potholed Road

Lying in a hospital bed in agony with doctors and nurses scurrying around talking in dark serious whispers. This is my image of serious illness. My vision of serious illness is not being up and about, it is certainly not a patient who every now and again has a few hours of complete pain free clarity.

The second description is largely a description of myself. It is odd then that I have had a deep revelation this week about just how seriously ill I am. It is also odd that it should come during my best week for many, many months.

I think I need to not redefine serious illness but to expand the definition. Certainly the person lying in a hospital bed in agony is seriously ill, in fact far more seriously ill than I am. Surely serious illness is also when illness puts your entire life on hold and alters it so completely that you no longer recognise it. Surely serious illness is when every minute of every day you must take seriously what you are doing so as not to make yourself worse.

I think I had presumed that I wasn’t seriously ill because I didn’t take any drugs, I wasn’t going to have an operation. In other words I didn’t meet the traditional norms of what makes somebody seriously ill. It is perhaps my starting to take prescription painkillers in the last week that has allowed me to reflect on where I am with M.E. by gently including me in this traditional description.

So I do take drugs to control my pain levels and manage my sleep. My treatment must also involve tightly managing my activity level, ensuring quiet rest and meditating regularly so as to train my muscles to relax. Without these treatments, my health will get worse. So I do not fit the traditional image of ill health but ill health is what I have.

You could question whether or not it is important to consider yourself seriously ill. No, to one extent, in fact it could be a sure-fire way to introduce negativity and depression into your life. On the other hand, for me, I believe it has been an important step in showing me how important pacing, sleep and relaxation are if I want to improve my health.

When you suffer from an invisible disease, a disease where there is no clear understanding of its cause, of how to treat it and of prognosis, I believe it is easy to allow yourself to believe there isn’t much wrong. There has to be though otherwise why would I and 250,000 other people in this country have their life on hold?

I think it is this understanding of how serious and chronic my illness is that has enabled me to grab hold of it and start to manage it. I’m not saying I have it under-control – far from it but I do think I’m beginning to understand how I personally need to manage it.

So no, this week has not been pain free. In fact, I have had the worst headaches ever this week. I’ve had plenty of moments of brain fog. No, I’ve not slept perfectly every night – though I have had more sleep than I’ve had for a very long time. No, I’ve not been able to do more than usual – in fact I’ve done a lot less.

However, I haven’t reach the point of collapse for 10 days. I haven’t suffered from Post Exertional Malaise for 6 days. I even completely cooked dinner one night. It was in all fairness a frozen meal that myself and my husband had made a week earlier but I managed to reheat it and cook rice for it, without husbandly re-enforcements. I managed to go out for my aunt and uncle’s 50th wedding anniversary and despite unexpectedly needing to buy shoes a few hours earlier (long story, don’t ask!), I didn’t collapse.

These may seem tiny, unimportant achievements to you but to me they are a sign that I may finally have worked out how much I can do without paying for it. They are a sign that my management of this illness is not completely wrong.

Not a single part of me believes, for even a second, that I will never be silly and do too much again. Of course I will, I like to push myself despite knowing it is foolish. I don’t for a second believe that the road to remission / recovery is going to be quick, I’m only at the very beginning of a road that will take months / years to travel along. It is a road filled with Karen sized potholes that I will frequently disappear into, to eventually be spat out many miles back along the road. As long as ultimately I’m still moving forward, these are potholes I’ll just have to deal with when they come along.

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5 thoughts on “The Serious Potholed Road”

  1. You are so much like me.
    I am at the stage of acceptance and management after 7 years.
    However that comes with huge frustration and sadness a lot ofthe time that I HAVE to do that and it’s soo hard for others to understand.

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    1. I’m not sure I’m consistently at the stage of acceptance! I do feel I’m managing it reasonably well. I’ve done a couple of things recently that should have led to collapse but didn’t and I see that as a huge positive. I do understand the sadness. As the weather gets better pm we often drive by places this I would,have walked to without considering it as anything, now I can’t. I find that very challenging to accept.

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  2. Absolutely with you.! And hearing anyone talk of days out that they so easily take forgranted but are so out of reach.
    Chin up there will be a way back.

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  3. It took me a long time to accept that I was seriously ill but as soon as I did my quality of life improved ten-fold. Accepting how ill I was enabled me to manage my illness better and live within my limitations instead of pushing myself to the point of collapse. I can’t claim that it’s easy, I get frustrated all the time and push the limits far more than I should but as you say, it’s a long and pot-holed road and we walk it one step at a time.

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