Phoenix

Two years ago, in September 2020, I woke up one day to find I had plummeted back into Severe M.E.

For quite a few years, I had been lucky enough to not be in the severe category anymore. Although any severity of M.E. will see the patient experiencing Post Exertional Malaise (an exacerbation of symptoms after mental, emotional, or physical activity), to have those years in the Moderate category were an absolute dream in comparison.

My illness started with an acute and sudden onset in 2010. I went straight in with Severe M.E. And so to leave that category was monumental. Few are fortunate enough to see that progress/change.

With M.E. there are several words used for a deterioration in our already ill-health. Setback, crash, relapse, flare. Many of us use these same words but our definitions alter.

A relapse for me is a return to how unwell I was in The Beginning (September 2010) and unlike a setback, it lasts months or years rather than days/weeks/a month or two.

The relapse of 2020 completely rocked me. Physically I was so unwell. But mentally I took quite a beating too. I was shocked. I had done nothing to trigger it; hadn’t asked more of my body that it could give. If you need reminder like I needed then, a relapse is not the fault of the patient*.

Two years later and I feel that I can finally say with some confidence that my body is getting stronger again. Two years. I keep flippantly saying I relapsed two years ago as if that’s no time at all; as if I’m referring to something that happened weeks ago. But two years is a good deal of time. And I’m once again reminded that patience is the most marvellous thing I have learnt from this whole sorry ordeal, of getting a virus aged 21 and never getting better.

Touch wood, but I think the tide is turning. I don’t want much. I know I still can’t go for walks or work (I haven’t since 2010). I still can’t read a book or cook, or do anything at all regularly and reliably. But to not be in bed as standard anymore and to have some choice and some freedom again is more than I ever thought I’d have again.

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*Not everyone likes to hear it (me included sometimes) but there is a level of responsibility that comes with this illness. Pushing our bodies so far in a moment/prolonged periods of denial is asking for trouble I’m afraid. You cannot pretend that you do not have this health condition, however much you hate it. Things will catch-up with you if you don’t treat your very poorly body more kindly. So while there are so many instances where relapses, or deterioration, happen through no fault of the patient, there are instances where they happen because we as patients haven’t accepted our limitations better.