I'm a regular poster but I've namechanged for this. I've recently been diagnosed with ME and I'm absolutely devastated but in a sense, it's a relief as it explains what's been happening to me over the last few years.
I can't turn back the clock but I want to warn others about this horrible disease that disproportionately impacts women.
I started feeling tired and under the weather and had numerous illnesses. I never seemed to be entirely well and never felt that I fully recovered. The doctor ran loads of blood tests. At first i was mildly anaemic, had low vitD, slightly low B vitamins and had slightly elevated CRP but this was put down to the fact that I had a viral infection at the time. I fixed all the vitamins but still felt exhausted.
Rather than resting more, I thought I must need to get fitter so tried to fit in a few more sessions at the gym or a few more runs on the days I felt well. I ate better, I lost weight, I was probably, physically, in the best health I had ever been but at the same time I was completely exhausted. This went on for about a year and I couldn't figure out what was wrong. I paid for a very expensive health check that checked everything and nothing came out of it. The doctor who ran the health check asked me if I was 'stressed' because stress can cause multiple viral infections and that run down feeling.
6 months later, I picked up another virus (or so I thought) and couldn't get out of bed. I managed to drag myself to a doctor who said it wasn't bacterial but 2 weeks later I wasn't better and when I went back again, he said 'if you've been like this for so long and you're getting worse, then this is likely to not be what you think'. I asked if he knew someone I could be referred to and I went to see a Long Covid specialist who confirmed that the multiple viral infections were probably not viral infections but signs I was pushing myself too much and this was likely to be ME.
I was bedridden for weeks. And then I started treating it like it was ME. So I had to learn how much energy I had and learn how much I could use each day. I was terrified of losing my job so I didn't tell work but could only manage one day in the office. Luckily no one complained.
It has taken me months to get to a place where I can manage a full day without needing to lie down. There is no cure. There is nothing that can be taken that can treat it that is guaranteed to work. There is barely any research going into the disease. Last week, a young lady killed herself rather than suffer with it (I won't link but if you look, it's on twitter). She isn't the first. This disproportionately impacts women.
What I want to say to you all - if you are tired and there appears to be no reason for it (not your thyroid, not severe vitamin deficiencies, isn't severe anaemia), do not push yourself. Rest, rest and rest some more. It seems totally counterintuitive that you wouldn't try and get fitter and try and get stronger but sometimes you have to stop and stop for some time. You do not want this. I can't walk to the shops, I can't go for a walk. I can't exercise, I can't enjoy anything because I'm exhausted all day, every single day. There is no cure. If I could turn back the clock a few years, I'd tell myself to take a break because maybe I wouldn't have pushed myself over the edge. Who knows. But please be careful!