Today is one of those days. I woke up and felt alright. I had my whole day planned out in front of me and was looking forward to what lay ahead.
12 hours later, I’m in bed feeling like I’ve failed because I didn’t get through everything I had planned.
There’s a very familiar cycle of emotions I, and many others like me, will go through on a regular basis… when struggling with a chronic health condition. In my case that’s fibromyalgia (FM) and chronic fatigue syndrome (CFS). I know a lot of others who have a diagnosis of FM, but equally, I know a lot of people who have never heard of it or do not understand what it is exactly. My GP once summed it up quite clearly for me when I asked her how she would describe FM to somebody. She said “inflammation or pain in any of the soft tissue; so anything that isn’t bone. This will also include soft tissues around the organs and explains why it sometimes feels like organ pain too”. I think that’s spot on. I always feel bruised all over. So if somebody taps my arm to get my attention, it hurts. The slightest of touches can be extremely sore. On top of that is the tendonitis pain; mostly in my lower arms/wrists/fingers and lower legs/ankles/feet. Not to mention the muscle aches, the muscle fatigue, nerve pains from the sciatic nerve shooting down my legs. I am 30 this month, and when I say that I feel like I am trapped in the body of a 90 year old, I genuinely am not exaggerating.
As if the pain as mentioned above were not bad enough, there’s also the CFS, which surprisingly for some, is more debilitating than the FM. It’s not just about feeling tired, sleepy, lethargic. It’s the feeling that every muscle in your body has been starved of energh and has nothing left in it. Like a car without fuel, my body just will not work when the fatigue reaches its peak. I struggle to even open my eyes, have a drink, lift my arm. When I’m like that it is petrifying. It is almost like sleep-paralysis (if you’ve ever experienced it). You are awake, and kinda know what’s going on around you, but you’re unable to respond verbally or physically. I try to speak, but my muscles don’t have the energy to move my mouth and though I make sounds, nothing that makes any sense comes out.
So I guess this cycle I was initially wanting to talk about is pretty understandable for anyone experiencing chronic problems.
This morning, I was at the “I’ve got this” stage. Then gradually as time went on I started to hurt, and the fatigue started to hit me. I had to cancel the rest of my plans for this afternoon and stay home to rest. Then I tried to stay out of bed and keep busy… but I got to the “I can’t do this” stage and crawled up to bed. Then the anger; I felt annoyed that I’d missed out on things again. I felt annoyed that I couldn’t stay up longer than I wanted. I was peed off that I can’t plan for tomorrow because I just have to see how I feel. I hate not knowing what I’m doing but have also learned never to agree to it because I hate letting people down even more than I hate missing out.
So there you have it… I’m still stuck on the anger. I probably will be until morning now where it’s likely I’ll feel more in control. How long that sense of control will last, is anyones guess. But it does help me to share this stuff. Only ‘cos it’s tired my eyes out enough to want to sleep now 😉😉