I feel very nervous about the title of this post. I certainly don't want to jinx myself by being too confident, but it does feel that something has shifted in the past 6 months or so.
Only 2 weeks ago I wasn't sure, as I was ill for a week or a bit less with what I believe to be a mild version of Covid, as I was in close contact with my cousin who tested positive the day after I saw her. I didn't test positive, but I did feel unwell with viral symptoms, but not strongly. When I got 2 days of post viral symptoms, I began to feel anxious that I might be back to square one, but happily .... no.
I have been ill with what was labelled CFS/ME for 18 years, though I was going downhill a few years before that. I coincided with my menopause at 49, so I assumed it was that and that I would get back to normal. I didn't, I got worse, but never bed bound, or even housebound. I couldn't walk as I did though, that was for certain. I felt like a worn down battery, and with migraines and digestive issues that seemed insoluble.
I never took much notice of the mainstream approach to ME as I had read up on what at first seemed like conspiracy theories, but I realised they were true. I did get help with benefits so after a struggle to get a job following a move to another part of the country, I gave it up and managed to have state benefits until my official retirement age at 62.
I began to try things to see if any of them improved my health. Some of them did a bit, and some did nothing or made me worse. My digestion was especially bad, and it took me over 10 years to get the problems with that resolved. That has helped enormously as I was in almost constant pain at one time.
I decided to challenge an NHS endocrinologist about my thyroid medication, as I had been diagnosed as hypothyroid some 10 years before, but I suspected that the Thyroxine wasn't helping me as it should. I was lucky enough to be given Liothyronine monotherapy on the NHS and still have it around 12 years later. Not an instant cure exactly but helped my body to cope much better over the years, I feel.
I found the answer to my migraines was to use natural progesterone. I wasn't even trying it for that, but for my bones, but when they began to recede, I realised the reason why.
One of the chronic issues I had with a debilitating pain in my sinus area, and seemingly a link with my immune system which stayed with me for years and years, and I tried various things like neti pots and oil of oregano to cure it, One day when I mentioned it to a woman in the local health shop, she asked me if I sterilised my toothbrush, and I had to admit that I didn't, assuming that a good wash under hot water was sufficient. However I began to sterilise it in boiling water every night, and my sinus pain went never to return.
It never occurred to me that stress could be a major factor until I went through a very difficult time over 2 and a half years starting in 2020, with my husband's sudden death, and then lockdown, and a year spent supporting my middle son's benefits issues at a distance, when the DWP took half of his income away without good reason. Having finally dealt with that, and had the DWP back down on his PIP reassessment, I immediately began to plan to move house, so yet more stress. I was also suffering from high anxiety at that time too which in retrospect was a side effect of the exhaustion.
When I arrived into my retirement flat in a completely new area, I was suffering from exhaustion which lasted months. In retrospect, though I didn't normally have exhaustion, I did have lifelong stress with family problems that ate into my sense of self throughout my life.
I began to improve a little in October, just when I began to feel that I had had a relapse that wouldn't ever go. Over the next few months I began to dig my new allotment, and am now at the age of 70 doing a lot of physical work there as it's in an overgrown state, 5 hours at a time. I do sometimes feel a bit achy on day 2, but it's very variable, sometimes with no payback really. I also volunteer at the local Oxfam researching and selling online, some vintage or antiquarian books, for a 4 hour stretch, when I could only manage about 2.5 at the outset.
There is one more thing that I discovered this year which I think I have had wrong with me, and untreated, for years, and that is, that I now believe that I have an allergy to house dust mite, which contributes to the fatigue I have felt for a long time, and the sense of 'getting a virus. I bought myself an air purifier and felt almost instantly improved, maybe by 95%.
It is very hard to assess oneself after nearly 20 years of a chronic condition, and as to how much I am really recovered, because of course I am starting some conditions of old age, like cranky knees. However, I know that I am fitter than I have been for a long time. Despite moving from lovely Cornwall to Greater London, I do think that the drier climate suits me more.
I do still use herbal medicine from a medical herbalist, and also take a range of supplements. I have thought of stopping them, but feel they maybe do help me enough not to end them.
I had some blood tests done last year, and am puzzled about my immunoglobulins which are all 3 below range, and yet I have no sign of getting lots of infections. I am in much better health physically and mentally than during the time I was most ill with ME/CFS. I do have low platelets and in fact have 3 autoimmune disorders, but they all seem to be stable - the underactive thyroid, Lichen Planus and Borderline Thrombocytopenia, which I had in pregnancy some 35+ years ago in pregnancy.
Only 2 weeks ago I wasn't sure, as I was ill for a week or a bit less with what I believe to be a mild version of Covid, as I was in close contact with my cousin who tested positive the day after I saw her. I didn't test positive, but I did feel unwell with viral symptoms, but not strongly. When I got 2 days of post viral symptoms, I began to feel anxious that I might be back to square one, but happily .... no.
I have been ill with what was labelled CFS/ME for 18 years, though I was going downhill a few years before that. I coincided with my menopause at 49, so I assumed it was that and that I would get back to normal. I didn't, I got worse, but never bed bound, or even housebound. I couldn't walk as I did though, that was for certain. I felt like a worn down battery, and with migraines and digestive issues that seemed insoluble.
I never took much notice of the mainstream approach to ME as I had read up on what at first seemed like conspiracy theories, but I realised they were true. I did get help with benefits so after a struggle to get a job following a move to another part of the country, I gave it up and managed to have state benefits until my official retirement age at 62.
I began to try things to see if any of them improved my health. Some of them did a bit, and some did nothing or made me worse. My digestion was especially bad, and it took me over 10 years to get the problems with that resolved. That has helped enormously as I was in almost constant pain at one time.
I decided to challenge an NHS endocrinologist about my thyroid medication, as I had been diagnosed as hypothyroid some 10 years before, but I suspected that the Thyroxine wasn't helping me as it should. I was lucky enough to be given Liothyronine monotherapy on the NHS and still have it around 12 years later. Not an instant cure exactly but helped my body to cope much better over the years, I feel.
I found the answer to my migraines was to use natural progesterone. I wasn't even trying it for that, but for my bones, but when they began to recede, I realised the reason why.
One of the chronic issues I had with a debilitating pain in my sinus area, and seemingly a link with my immune system which stayed with me for years and years, and I tried various things like neti pots and oil of oregano to cure it, One day when I mentioned it to a woman in the local health shop, she asked me if I sterilised my toothbrush, and I had to admit that I didn't, assuming that a good wash under hot water was sufficient. However I began to sterilise it in boiling water every night, and my sinus pain went never to return.
It never occurred to me that stress could be a major factor until I went through a very difficult time over 2 and a half years starting in 2020, with my husband's sudden death, and then lockdown, and a year spent supporting my middle son's benefits issues at a distance, when the DWP took half of his income away without good reason. Having finally dealt with that, and had the DWP back down on his PIP reassessment, I immediately began to plan to move house, so yet more stress. I was also suffering from high anxiety at that time too which in retrospect was a side effect of the exhaustion.
When I arrived into my retirement flat in a completely new area, I was suffering from exhaustion which lasted months. In retrospect, though I didn't normally have exhaustion, I did have lifelong stress with family problems that ate into my sense of self throughout my life.
I began to improve a little in October, just when I began to feel that I had had a relapse that wouldn't ever go. Over the next few months I began to dig my new allotment, and am now at the age of 70 doing a lot of physical work there as it's in an overgrown state, 5 hours at a time. I do sometimes feel a bit achy on day 2, but it's very variable, sometimes with no payback really. I also volunteer at the local Oxfam researching and selling online, some vintage or antiquarian books, for a 4 hour stretch, when I could only manage about 2.5 at the outset.
There is one more thing that I discovered this year which I think I have had wrong with me, and untreated, for years, and that is, that I now believe that I have an allergy to house dust mite, which contributes to the fatigue I have felt for a long time, and the sense of 'getting a virus. I bought myself an air purifier and felt almost instantly improved, maybe by 95%.
It is very hard to assess oneself after nearly 20 years of a chronic condition, and as to how much I am really recovered, because of course I am starting some conditions of old age, like cranky knees. However, I know that I am fitter than I have been for a long time. Despite moving from lovely Cornwall to Greater London, I do think that the drier climate suits me more.
I do still use herbal medicine from a medical herbalist, and also take a range of supplements. I have thought of stopping them, but feel they maybe do help me enough not to end them.
I had some blood tests done last year, and am puzzled about my immunoglobulins which are all 3 below range, and yet I have no sign of getting lots of infections. I am in much better health physically and mentally than during the time I was most ill with ME/CFS. I do have low platelets and in fact have 3 autoimmune disorders, but they all seem to be stable - the underactive thyroid, Lichen Planus and Borderline Thrombocytopenia, which I had in pregnancy some 35+ years ago in pregnancy.
