And again today I feel like I am losing myself to the demon that is RA.
From no sleep to hours and hours, punctuated by half waking moments where I heard my neices and nephew playing in the garden but was too bone achingly tired to even lift my head from the sofa.
It felt as if all around me the beautiful island of Cyprus was enjoying the sunshine, but I was trapped in a separate place where energy may as well have been unicorns.
Trying to explain fatigue is incredibly difficult. Ask almost anyone who suffers with RA and they will tell you how debilitating it is, I’ve had many agree with me that the fatigue is worse than the pain. Seriously, offer me a partial cure for RA that will either remove the godawful joint pain & corrosive damage, or remove the fatigue, and I’ll take the latter.
It’s bearing a crushing weight even when you’re laying down and not moving, it’s feeling totally, mind numbingly, exhausted regardless of two hours or twenty hours sleep. It’s being surrounded by a cushion of dead air, it separates you from the real world where people live and breathe and move and laugh and just be without it being so f*cking difficult. It’s walking to the bathroom and back and having to sit down and rest.
Add all that to an constant aching that doesn’t leave out a single part of your body. That’s fatigue.
It is the most debilitating thing I have ever known, and the most frustrating. It makes me angry and it makes me sad and it sometimes makes me scared for what lies ahead.
I am trying very hard to stay positive, I’ve only been on methotrexate for 6 weeks, prednisone for four weeks, I’ve now had my folic acid upped and we’ve added vitamin D to the mix. It could all start working any day. The odds are between 30% and 50% of this combination of meds working for me. Not the best, but certainly possible.
In the meantime I’m mentally crossing my fingers (can’t do it physically anymore!) that I’ve got enough spoons tomorrow for the planned visit to Limassol Castle and lunch with my sister-in-law, it’s a couple of hours, should be easy, right?!!