When you’re diagnosed with a chronic illness, you’re told a few things like take it easy, lose weight, keep your muscles active and learn to pace. But they don’t tell you how! When you have a chronic illness like Fibromyalgia, exercise of any kind could make you worse and send you into a flare. This is assuming you have a Dr who tells you anything apart from the name of your illness!
However, there are an awful lot of things they don’t tell you…
1 – Don’t expect to ever wake up refreshed. There’s anecdotal suggestions that for a healthy person to understand the fatigue of a Spoonie they must stay awake for 3 days straight. The exhaustion is real and it is possibly one of the most debilitating parts of Spoonie life.
2 – Sex is off the table. When you are exhausted you are not in the mood and finding a position that doesn’t cause a lot of pain can be hard to come by. Some relationships can fail due to this. Speaking of relationships…..
3 – You’re going to lose friends. Your abilities are going to change and your social life will too, this means friends you enjoyed going drinking with are going to find less things in common with you.
4 – You will make new friends. When your healthy friends struggle to find common interests you will probably start turning to support groups, and guess what!! These groups will provide some of the best friends and support you can find! 🙂
5 – You’re going to turn into an honourary Doctor and will probably know more about your illness than your GP. Most of the medications and therapies you use to survive will have probably been suggested by you.
6 – It’s not just painful and tiring, its also an assault on your emotions! This is the most important part of self care. The psychological problems can cause a person to lose the want to survive, lose the will to live. Everyone’s way of combatting it is different, for most of the people on Conscious Crafties, craft is what is keeping them alive. Craft and the family we have found here.
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