Before I was diagnosed with Ehlers-Danlos syndrome, the doctors diagnosed me with Fibromyalgia. There are many similarities. The pain and tenderness in the muscles and joints, and the chronic exhaustion.
There are a couple of ways the exhaustion exhibits itself. On a regular day, I may just be slightly tired. I can usually get through the day without a nap. I might be tired toward the end of the day, but I can hang in.
A bad pain day will often make me more tired, and require a nap. Sometimes, I need to sleep to escape the pain. It’s just that unbearable. Going to the hospital doesn’t work, as I’m treated as a drug seeker, and I am very afraid of catching a viral infection. I usually rely on what I have at home for breakthrough pain and relax as much as possible.
Insomnia will sometimes creep up and keep me awake, and I spend weeks trying to get back into the routine. Sometimes it’s easier, sometimes it’s hard. I usually need to rely on sleeping pills to get back into rhythm, but it’s always a good idea. I take melatonin to help me stay asleep at night, but if I’m up past 11 pm, I find I’m up for a long time. Usually, I think it’s pain, keeping me up, but it could be stress, adrenaline, or the occasional panic attack.
There is an illness called Sleeping Beauty Syndrome, where sufferers fall asleep for two to three weeks at a time and have a hard time being woken up. I joke I have a mild form of this, as every couple of months I sleep for nearly a week, just waking up to occasionally eat and use the washroom. I’ve done this for years.
If I go out to lunch or an event, I will definitely be napping when I return home. Doctor appointments, store, dentist, nap. The nap is usually as long as I spent out. Have to recuperate.
Yesterday, I decided to nap for an hour at 11. At noon I was going to get up at 3. I woke up at 6:45. I felt much better. Ready for more, though.
I’m sure my medication has a little bit to do with this. I have decreased the opioid to a third of what I was taking, so it’s better, but unfortunately I think it’s only a very small part of the equation. I believe the exhaustion is mostly from my illness.
I used to be constantly worried about not being well rested enough, but no matter how well I sleep or how much, I’m still chronically tired, so I give up on rested perfection and am just going to try my best.
Okay, time for a nap.