Endometriosis UK

Overcoming the constraints of living with a chronic illness

It's hard when your disease means that you move from a lively, energetic go-getter to a helpless heap.

What is your story? What have you achieved despite your crippling disease. How did you overcome the challenges of living with a long-term health condition? How did you interact with others to get them help you? What motivated you to keep going even though every fibre in your body was telling you to give up?


Please share!

2 Replies

I am still learning how to cope even after all this time of being in pain. I have finally been diagnosed this past year (after 2 laps in 5 years), but have had chronic symptoms for near 7 years now (and horrendous cramps since i was about 15--- I didn't know those cramps were not normal until much later when someone asked to have some ibuprofen for cramps. I was like, oh how many do you need; 5 or 6? And the girl was like ummm...... I only need 2. Say WHAT?!!!!!)

I love to walk on nature trails, and I had to give that up again. I grow fat from not exercising. I hate it, but the pain from the muscle movement against my endo spots are just not worth the exercise. I currently have slowly upped my steps per day ( I used to be able to walk 5-7 miles per day before the crippling pain started returning with a vengeance) so that I may try and lose some of this Depo shot weight.

Hmmm.... you said positive things too. Well, I am extremely happy when I have a no pain or even a low pain day when I have something to do with loved ones. Almost to the point of giddiness, but even then I constantly worry about when the pain will return. Some days I get a full day, and other times only a few hours of being pain free.

Another hope, I constantly am searching for and usually trying new pain relief methods. So that means I am constantly hopeful that something will work.

I also have turned some of this illness into armchair volunteer work. I can work on sewing blankets for animal shelter cats. I currently found a site to make greeting cards for terminally ill children in hospitals, as a way to brighten their day. I can count birds each year for the Backyard Bird count that is each February. And finally, each summer I raise and tag Monarch butterflies (doesn't take much effort on my part even on my bad days.....in fact it gives me a reason to get up and move to go feed the caterpillars so they don't die) and release them for the fall migration.

Other then that, I am terribly sorry to say I have really become a recluse in the day to day activities. I have always been punctual and be able to plan my schedule out ahead of time, and I no longer can do that. Everything is based on "how I feel that day" and I HATE that!!

1 like

I'm so sorry to hear that your suffering, the constant pain, and even the fear of pain have ruled your life. It's a cruel condition, isn't it?

I'm slightly jealous about the Monarch butterflies. I'd love to be able to witness their migration. It's a little bit As if we were those caterpillars (figuratively speaking only!) a little stuck in our bodies, whereas we all want to be the butterflies, flying free.

Thank you for sharing. Your words, the quiet resignation, really touched me. You're not alone. Can you please think of me when you feed the next Monarch caterpillar? I'd really appreciate it.


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