Morning peeps, so you’ve probably gathered that things have been very up and down and unpredictable with my symptoms over the last few weeks. Well that’s how it can be with M.E. for a lot of people. I often go through periods of time where I just can’t get a handle on some consistency from day to day and it can go on that way for months sometimes.
The fluctuating nature of M.E. is one of the main reasons that people like me can appear ‘flaky’. We make plans and cancel at the… last minute because we just can’t get it together that day.
I quite often feel okay-ish whilst I’m in my controlled environment at home but then realise about half an hour after I’ve gone out to try to do something, that actually I don’t feel as well as I thought and this is going to have consequences.
As you can imagine, over time this has a few effects. 1- You start saying no to things because you lose confidence that you can do it on the day. 2- Even if you do manage to do it on the day, the payback that you can expect is very off putting so you start to think that it’s not ‘worth it’. 3 – Friends that you’ve let down time and again can feel hurt and confused and 4 – People will stop asking you to do things.
This is the place I’ve been in for a good few years now but I am trying hard to change my mindset. To stop being afraid to make plans and to stop avoiding the payback. It’s a big thing mentally to say to yourself “right, well this is going to be hard and then after you’ll feel like complete shit, but do it anyway and hope for the best”. It goes against all of my instincts of self preservation but in my heart I feel that the psychological benefits I get from the few times I can get out and about and see friends, staves off the awful depression that comes with isolating myself.
It’s hard to be patient with yourself when you can’t always be a good friend to others and you can’t do something like clean your bathroom radiator without your husband urging you to take it easy and not overdo things (Mr M.E on Saturday past). But I must must must learn this lesson….not to go charging on, on the days when I feel a little bit better, or that one day won’t turn into 2 or 3 or more good days.
I’ve had tons of ideas now about stuff to write about so I’ll try to post a few more this week.
I love talking to you guys, it helps me and I hope it helps some of you.