FMS/ME/POTS/Dysautonomia – remission.

I’ve been feeling better the last five days or so, and I have been enjoying the little oasis of having much much fewer symptoms, including much less pain. Lovely.

My BP is still unstable but my pulse and sats are so much better. In most chronic illnesses there is a pattern of remission and relapse. But in the system wide ones it’s a difficult thing to measure. I’ve noticed that many people get that few days of remission that is so welcome to us all; but others can go into almost or actually complete remission for months on end, and occasionally years.

As far as I know, there is no research on what causes remissions. We don’t know what causes them, why some people get good ones and others get little ones. We don’t know why some people only get partial remission and why some never get a remission.

Today, five days into my little oasis, the pain is back and my BP is shooting upwards again. Nevertheless my POTS is still in abeyance. I can stand up without blacking out or feeling sick, and my pulse is staying below 12o. Lovely stuff.

Back at the beginning of this disease (10 years) doctors told me quite clearly that it would all just go away. I believed them. They lied with the sure knowledge that they could do so. I am still astonished by the number of outright lies doctors feel able to tell patients.

This lie was a particularly mean one. After a while I began to feel better. I could manage a little more and the foggyness in my head was better. I thought I was getting better.  More and more symptoms began to lift and I was so happy because I thought I was about to get my old life back. I made plans about getting rid of the crutches and wheelchair. I couldn’t wait. So I pushed myself. Walk a little more, do a little more, keep it going. And of course I crashed.

Doctors shrugged it off or said I needed to try harder.

It took a while for me to learn that doctors should be ignored and never trusted. But I learned. Doctors should not get away with such lies, but as they do, it’s best to treat the things they say with extreme caution.

I now know the little remissions I get are not a sign I am getting better. But I am not made unhappy by this. Now that I know what I am fighting I can fight it realistically. The truth really does set you free. I can enjoy the oasis of remissions when I have them and they do mean I can get more done around the house.

Now I know some of you will be shouting at the computer at that sentence. I admit I do bring on a kind of boom and bust cycle because I use the remissions whether mini ones or pretty good ones like this has been, to do more. I know lots of advice saying pace carefully and keep remissions going, but I don’t know how long a good patch will last and in the bad patches which have been very bad indeed recently I don’t get nearly as much stuff done as I need. It has to be done sometimes – so remission moments are when I catch up. Does this shorten remissions? I don’t know – possibly. But there’s a balance to be had between trying to be less sick and trying to be a wife and mother.

I’ve read a lot of people’s stories over the years, especially more recently since I decided to get hold of the research and see what is happening out there. Lots of people have talked about losing friends and family because of how sick they were/are. For as long as I am able I will do the things that are part of being a wife and mother, especially a home educating mother. It’s important not to let the disease decide who I am.

(crashed this morning. Well it was good while it lasted :) )

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