Hi Team M.E.
Well, as is often the case when you have CFS/ME, I have not been recovering from my four days of living it large as I’d hoped. I realised late on Wednesday afternoon last, that I had picked up a cold and that has kept me really floored for about a week now. I was just saying to Mr M.E. last night that “I haven’t felt this unwell for a good while”. But Mr M.E. says I say that about once every couple of months so I don’t know if time just works differently when you are alone with yourself quite a lot.
I have jotted down several subjects over the past week that I’d like to write about but I just haven’t had the energy to do anything, waking up after 12 or 14 hour sleeps, still with only four or five spoons. Barely able to move from bed to the sofa and back. I have to be honest and say that when my M.E. is this bad, I find it quite frightening and it can get me down but I’m trying to keep my spirits up and remind myself that what seems like forever to me, lying in bed, is in fact, only a week or so out in the real world.
So, given my current situ, I’d like to talk today a bit about immune systems and, in particular, viruses!
I think something that is not really known or understood by our friends and families about CFS/ME is that many of us labour around with greatly weakened immune systems. It adds to the risk of going out and about! There is a lot of research out there now about Killer T cells and all that but from the coal face, here is what I can tell you…
I, like a lot of people, don’t have a great deal of memories of my childhood but my mum will tell you I was sickly, like, a lot. I often had upper respiratory infections and my mum told me about the nights she would sit up with me worrying about my breathing and listening to the drip drip drip of what she assumed were fluids going from the back of my nose down into my throat, “an awful sound” she said. I’ve only one or two vague memories of being set up on a temporary bed in the box room (before my brother was born) with her concerned face looking on, covered practically head to toe in vicks vaporub and of her liquidising my food when my throat was too sore to eat.
All simple childhood stuff right? Well I thought so too and I went on to become a reasonably ok adult for a while… except that I always had this propensity to pick up every bug, cough and nasty that I walked past and whenever I did catch these things they seemed to hit me harder than the person I’d caught it off or given it to. I am pretty sure that everyone thought I was hamming it up but for me a cough invariably turned into bronchitis or a 24 hour bug was a 72 hour bug, it just has always been this way.
After I was diagnosed with Post Viral Fatigue in 2002, I noticed this got worse, especially with viruses, of which the common cold is one. I spoke about it in a previous post, I had constant coughs, colds and chest infections one after another for about 18 months afterwards.
I don’t know how to explain my experience of having a common cold to you except to say, that if I catch a cold, it can really be quite a big problem for me. As I said to Mr M.E. last week, “I know in my head it is a cold but it feels like the flu”. I felt so ill last Thursday night that I just sat and cried whilst Mr M.E. held me trying to comfort me. The body aches and pains that I live with anyway are magnified tenfold, the blocked nose is impossible to breathe through at all even with decongestants and nasal sprays, I felt totally dehydrated no matter how much water I drank and my eyes burned with hot dryness. Exposing me to a cold is like exposing a new born baby to one, I am defenceless.
The fatigue was almost unbearable and even after the cold started to ease up a bit, on Tuesday the fatigue hit even harder, leading to, Mr M.E. putting me to bed at 7.30pm. I promptly fell asleep and didn’t wake until just before 11am yesterday morning, still feeling as though I had run a marathon and not slept at all.
Throughout this time my head has been thumping and I have had diarrhoea multiple times each day. Look, I know it’s gross to be talking about my bowel movements all the time but I said this was going to be the Real ME and my body is attacked system wide, every day.
The Tuesday afternoon/evening followed by the 15-hour sleep, type days, are the ones that scare me the most. To just lose that much time and not be aware… to be so out of it before I even go to bed that it’s like I am on drugs of some sort with my eyes glazed over not able to concentrate on what my husband is trying to say to me. I’ve had times like that in the past, that go on for three or four weeks followed by a few good days and then back to it for another couple of weeks and I do believe that in those moments I am on the verge of having severe M.E. and not just moderate M.E.
My biggest fear is that as I get older this seems to be getting worse, fewer good days and more bad ones. I’m terrified of ending up completely housebound because doctors still don’t take this disease seriously enough and there is still not enough biomedical research being done in this country. There is still an emphasis on psychological treatments and the assumption that the symptoms are somehow manufactured by the mind. I’m no doctor but I am telling you my gut instinct is and always has been that this is an autoimmune disorder just like MS and Lupus.
Now I am going to visit my sister and my much-loved family for a week next Wednesday and it’s going to take a lot out of me. I have to try my hardest to get better than I am now, to rest and be ready to travel (which is never easy) and so I don’t know if I will have the puff to write a blog post next week or even the week after. I will do my best because I am committed to this but I can’t promise.
I hope this has resonated with some of you, love you guys, speak soon