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Living with Pain

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6 months 3 weeks ago #9 by Jac
Living with Pain was created by Jac
Hi everyone
Those of you who know me, will know that I have lived with chronic pain for over 30 years. I recently had a spinal cord stimulator implant and this has helped me to deal with the pain much better on a daily basis. Living with pain is so tough and clouds everything. The thing about pain is its so hidden, I put on a brave face and no one would know. If anyone asks I say I am 'fine', most of us do exactly the same. Last week I was on the train sitting in a priority seat as it was the only seat available. An elderly lady came on the train and no one offered her a seat. Because I was sitting in the priority seat, I stood up and suffered very badly after standing in a crowded train. I should have asked someone else to stand for the lady, but because I don't look as though I have a problem I didn't. Pain impacts so much on daily life and yet its so hidden. I would love to hear from anyone who also lives with pain - I know there are so many of us out there.
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6 months 2 weeks ago #13 by Magic Megs
Replied by Magic Megs on topic Living with Pain
Oh Jac - this seems to be such a massive thing right now, the way people assume that disability is "being in a wheelchair", it drives me bonkers!

I suffer from bad ME/CFS, which means sometimes my legs will quite literally give out on me from pure exhaustion and I just can't take another step, but as a healthy looking 25 year old, no one seems to understand! I get comments like "oh yeah, I get tired too" - it drives me crazy!

I also struggle with my own family understanding - last week my partner and I were supposed to go out for dinner, but I physically could not get myself out of bed, my body was exhausted, and the brain fog was making speaking difficult. My partner is very supportive, however he was actually not so understanding at this point, getting grumpy about the fact I just "don't want to go out"

Do you feel the same, that people are sympathetic, but don't really understand and get irritated when you are unable to do something that effects them?

x
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6 months 1 week ago - 6 months 1 week ago #15 by Jac
Replied by Jac on topic Living with Pain
Megs thats so awful and I totally understand how you must be feeling. I first damaged my back in my late twenties and felt no one really understood. I also got comments and still do! such as "oh I have a bad back too" I have no got to the stage of not telling people and just saying I am fine. How many of us say we are fine when we clearly are not? I know I say it because I feel no one really wants to hear unless they are family and true friends. Strangers are not interested. It takes so much willpower to get through each day sometimes.
Last edit: 6 months 1 week ago by Jac.
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