So I am fortunate enough to be able to function relatively normally with my Endometriosis (which I am thankful for as I recognize that a lot of people have it much, much worse). I work part time and have two young children, a reasonably busy life which suits me well the majority of the time.
However, like all of us here, there are times which I struggle. Mostly through fatigue and brain fog. There have been times where I have lay on the bed and wanted to cry because the thought of moving less than 3 feet to get in the shower seemed like the biggest effort in the world. There have been times where I have asked my kids to repeat themselves several times as my brain won't process a simple sentence. Times where I think I will never make it through my shift at work. These episodes seldom last longer than a few days, but I know they will never stop happening.
My problem is, I find it hard to explain to people how one day I can be fully functioning productive adult with all my shit together, and the next day a zombie with mush for brains? I am lucky that my husband gets it, but how do I explain to my friends that I am not being off with them when I am not as chatty as usual, or when I don't notice them saying hi to me in the playground? Or how do I tell my boss that I am not an incompetent moron, even though I have completely blanked when trying to do a task that I have done repeatedly for the last 8 years?
People know I have endo, but don't really equate it with these kind of symptoms. I am not asking for their sympathy or attention (I am very conscious of this as I have seen how some people automatically give the eye roll to anybody who dares to mention chronic illness), I just want them to accept my temporary state of malfunction and not think of me as lazy or a drama queen (which I most definitely am not!)
I would use the term "flare" but I always associate that more with the pain. Looking for a lighthearted yet effective way to refer to this state if anybody could help? (I'm hoping your brains work better than mine!)
Sorry for the long winded post, hope it makes sense!
Written by
MrsWalshy
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This is actually one of the things I struggle with most. I have fatigue and brain fog every day but some days are better than others and some days I will make a lot of effort to try participate in something. So, sometimes, I may look totally fine but actually I am really struggling or I will pay for a week for it. It's the inconsistency and invisibility of it that can be really hard for people to understand.
I try not to use the word 'tired' because I think people just think about their own feelings of tiredness and think that's what it's like when it's clearly a lot more than feeling tired through lack of sleep. I'd have nights of no sleep at all in the past and I'd still be nowhere near as exhausted as I feel today, after 10 hours of sleep. I think even the word fatigue doesn't really feel understood. I actually feel that word creates no empathy from people, unless they have it too.
In general, I just feel people don't get it and I am working on feeling less bothered about that and just focus on doing what it is that I need. So, like today, I was supposed to meet 2 friends for coffee and I just told them I couldn't as I was unwell. I didn't bother to go into it all. One of them is a new mum so I'd imagine trying to explain how my tiredness is something I can't fight, would likely get into a whole nightmare of her feeling she'd love to just retreat to her bed when she's tired and 'whose tiredness is worst' kind of thing. The fact is, I am ill and that's what I need them to understand.
I'm not sure if anything I've wrote will be helpful- I think I just struggle with the same thing and I seem to be moving towards stopping trying to make people understand and instead just focus on telling them what I need.
I struggle with fatigue and brain fog quite often, people often assume you are fine when inside you are struggling and can’t think straight because you just don’t feel well. I am now of the opinion that I don’t care what others think, my family & close friends are the only ones that know truly what I am going through. As for others I think it’s personal and I don’t discuss it. If I am mid conversation and can’t think of the word I was going to say I just laugh, what else can you do. I think people in general can be quite cruel and don’t understand so I don’t try to make them understand. Hoping you have supportive people around you, concentrate on them and when you are suffering with brain fog, fatigue, rest up & be kind to yourself. I am glad I now know others through this who suffer with this, it makes me think I’m not losing my marbles & that it’s a normal effect of these gynaecology issues x
Thanks for your replies ladies, looks like we're all in the same boat. I thought I was feeling normal today until I conked out this afternoon and only just woke up on time to pick the kids up from school 😳 x
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Frustration with doctors..how to get them to refer you to get a lap.
How do you cope emotionaly?
how do you deal with the fatigue?
How do you describe your pain?
