I had a brief and fleeting Epiphany the other day.
I am not stuck in 'Boom and Bust' or a cyclical waxing and waning of symptoms because I am overdoing it and then resting, then over doing then resting, but that something else entirely is going on (I do however get severe PEM from minimal extra activity beyond baseline)
The past 6 years, since my severe relapse I have been following the advice to pace to try and even out the terrible, cyclical ups and downs of this illness. I do need to pace to avoid PEM but I now feel strongly that the cycles I experience are coming from my immune system and extra illnesses I am getting on top.
I am one of those who catches everything going - although not so much bad colds. The problem is that my body doesn't mount a good immune response so they linger for weeks (usually about 2). Then I may have a few good days or even at the most two weeks before another nasty hits and takes me down again for two to 4 weeks. occasionally these illnesses run into each other causing months of crashing at a time.
This suddenly became apparent this week after a run of ill health on top of the usual M.E symptoms.
In June I had a severe sore throat which over a week turned into a chest infection, which became severe and upset my asthma and then I had weeks of nasty drugs that made me feel worse. As soon as I started to feel better - around mid July - I got a horrendous case of heartburn and stomach pain (so did my husband) his lasted a few days while mine carried on well into August (and I felt extra exhausted). Just as this was clearing at the end of August my husband became extremely ill, very quickly with stomach pain, chills and a high temperature. I also that same day started to feel sick with stomach pains, but was no where near as sick as he was.
Within 24 hours he said he was 90% better, the next day fully recovered. For me it took two weeks to come on and about a week to leave me - I never had a temperature at all.
As soon as this was coming to an end around the beginning of September my youngest daughter started coughing and complaining of a blocked nose. Oh no, I thought- that's it for me - I may even end up back on steroids for my lungs if I catch her cough and cold. I started to feel bunged up - my asthma declined. She was ill for a week and then better altogether. I am still very slowly 'coming down with something'.
In-between all these events I had a few days here and there of feeling a bit better. Right now I feel the best I have in months (still not great), but as the cold virus takes hold I expect to go down hill again over the next few days to week.
It seems that my ups and downs, boom and bust is entirely immune mediated. I am staring monthly IV Gamma Globulin - 10g from November for three months so we will see if that makes much of a difference to my over all health. I suspect (as obviously my Doctor does) that if I can STOP catching things - or at least be properly sick and recover quickly- and treat my intracellular infections then I may have a chance at some improvements!
I wonder how many of us this scenario is true for?
I am not stuck in 'Boom and Bust' or a cyclical waxing and waning of symptoms because I am overdoing it and then resting, then over doing then resting, but that something else entirely is going on (I do however get severe PEM from minimal extra activity beyond baseline)
The past 6 years, since my severe relapse I have been following the advice to pace to try and even out the terrible, cyclical ups and downs of this illness. I do need to pace to avoid PEM but I now feel strongly that the cycles I experience are coming from my immune system and extra illnesses I am getting on top.
I am one of those who catches everything going - although not so much bad colds. The problem is that my body doesn't mount a good immune response so they linger for weeks (usually about 2). Then I may have a few good days or even at the most two weeks before another nasty hits and takes me down again for two to 4 weeks. occasionally these illnesses run into each other causing months of crashing at a time.
This suddenly became apparent this week after a run of ill health on top of the usual M.E symptoms.
In June I had a severe sore throat which over a week turned into a chest infection, which became severe and upset my asthma and then I had weeks of nasty drugs that made me feel worse. As soon as I started to feel better - around mid July - I got a horrendous case of heartburn and stomach pain (so did my husband) his lasted a few days while mine carried on well into August (and I felt extra exhausted). Just as this was clearing at the end of August my husband became extremely ill, very quickly with stomach pain, chills and a high temperature. I also that same day started to feel sick with stomach pains, but was no where near as sick as he was.
Within 24 hours he said he was 90% better, the next day fully recovered. For me it took two weeks to come on and about a week to leave me - I never had a temperature at all.
As soon as this was coming to an end around the beginning of September my youngest daughter started coughing and complaining of a blocked nose. Oh no, I thought- that's it for me - I may even end up back on steroids for my lungs if I catch her cough and cold. I started to feel bunged up - my asthma declined. She was ill for a week and then better altogether. I am still very slowly 'coming down with something'.
In-between all these events I had a few days here and there of feeling a bit better. Right now I feel the best I have in months (still not great), but as the cold virus takes hold I expect to go down hill again over the next few days to week.
It seems that my ups and downs, boom and bust is entirely immune mediated. I am staring monthly IV Gamma Globulin - 10g from November for three months so we will see if that makes much of a difference to my over all health. I suspect (as obviously my Doctor does) that if I can STOP catching things - or at least be properly sick and recover quickly- and treat my intracellular infections then I may have a chance at some improvements!
I wonder how many of us this scenario is true for?