Do you ever have a moment when someone says something off-hand and all you can think is you don’t really understand my illnesses much?
I had that today. Someone close to me, who has supported me since day one, who has taken me to numerous doctors clinics and hospital appointments who I though understood so well what goes on… but, alas, perhaps not as much as I thought.
She said to me “I’m so tired, it’s like all the lack of sleep is catching up with me. Just like you.” I just hmm-ed in response.
Is that what she thinks my ME/CFS is? Lack of sleep that catches up with me making me tired. I thought she knew it was more than that, so much more than that.
If anything happens the other way though, someone says ‘I’m tired’ and I have occassionally said ‘not as tired as me’ (which I know is wrong, my constant, chronic fatigue does not negate their tiredness) I tend to get my head bitten off. Why do I have to umderstand that they are tired for a day or two days but my ‘tiredness’ is something to mock?
I am struggling right now. And no one can see it. I am in so much pain and I can’t even tell anymore if its fibro pain, ME/CFS pain or an actual injury. This scares me a little, I don’t know what is going on with my body any more. I am crying silently at night because I cannot hold it in anymore.
I can hardly move my hands and my fingers, yet I still have to make dinner. People offer to help but with such a put-upon tone as though they hope I will say no, so I do. Say no. Or they offer to help when I am about 5minutes from being done and am clearing up. It is pointless to ask then and there is no offer to help clear up.
I am the only one with chronic illnesses and I do dinner 6/7 nights a week. No I don’t have a full time job but I HAVE TWO CHRONIC ILLNESSES! Do they not understand that chronic pain means all the time? Do they not get that fibro affects 100% of the body 100% of the time. There is nevere a part of me that is not in pain, it’s all just varying degrees of ow, ouch, super ow, mega ow, and motherf*cker!
Sorry for the rant I am a bit pissed off, tired, sore and cranky. I will meditate and try to sleep. Take care of you.