Tuesday, November 29, 2016

Fatigue is my enemy

By Tatjana van der Krabben

For me personally fatigue is the cruelest lipedema symptom of them all. I can push through pain, happily fool myself into believing my legs and arms aren’t all that large (imagine the surprise when I went up a size), but the fatigue is always there. Two bad nights in a row? I’ll have to run on coffee for three days. A trip to New York City and walking 6-7 miles a couple of days in a row? I honestly look like I pulled an all-nighter.
Taking and having a moment at the New York library
 
It’s the stuff that drives me up the wall, the stuff I can’t fix. It got a lot better after liposuction and by upping vitamin B12, but I still don’t come close to the energy levels of a healthy person. It’s never enough, really. I’m full of ideas. There’s so much I want to do and all I constantly seem to do is weighing pros and cons, subtracting the estimated amount of energy per activity of the estimated total. I had to drop things along the way or conclude afterwards that a repeat of an activity may not be wise, even though I had a wonderful time. I can’t stand it.

Gem of a beach, the Algarve, Portugal - roughly 200 steps to reach it

Give me spoons*! I want to scream at the universe. Give me spoons to live my life, be there for my kids the way I would like to be there for them, to see more of the world, build my business, to help my ageing mother and actually have a social life.

It’s a little worse in fall and winter. I’m currently adjusting. Again. But I’m not motivated, because I don’t want to adjust. I just want to go about my routines as if it were spring or summer. Minimum. I would be better off going with the flow and deal with the facts, but right now I’m too busy being angry. I’ll learn. Again. And I will adjust. Again. Just not today.

*Spoon theory

4 comments:

  1. Gosh, I am just so surprised at all the things this stupid disorder causes..I just received my C-pap and expected that to help..it does not..I have been trying for years to get my energy/endurance up..It is just so crippling..I am learning about this condition on line..There is such a lack of knowledge on this..Thank you for the education that you are posting..

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    1. Unfortunately we're still at that point where we rely heavily on what we learn online. Little by little knowledge is reaching the medical profession and research into the key questions (what is it and what causes it) is starting, but it's all baby steps.

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  2. I'm still in denial about lipodema fatigue...no one seems to recognise it as a real symptom...so I too deny it exists, till I'm too wiped out not to@

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    1. You're right: it's not recognized, although sometimes it's linked to vitamin deficiency or thyroid issues. At the same time it's what we appear to have in common with all chronic illness. Our bodies need to work extra hard to function. Also, pain is draining, which is also often overlooked.

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