Rant ahead

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.


3 thoughts on “Rant ahead

  1. Unless someone is experiencing chronic illness, they don’t realize that’s it’s a full time job in itself. They may support you and say they understand, but they will never fully understand until they experience it for themselves. And even then everyone’s experiences are different. I have a few chronic illnesses and I’m a nurse and I’ve never claimed to understand my patients in the past, and still don’t today, but now I feel like I can relate to them more and it makes me understand what they’re going through more and why sometimes they snap for no reason. Some nurses/medical staff might get mad, but not me. Sure sometimes I get frustrated, but then I think…well look at their situation they’re in pain, they’re not feeling well…I might not know exactly how that feels, but I know when I have my pain I can snap. It makes me a better nurse, it truly does. But yea…they’re never truly understand how much of a full time job it is just managing our health.


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