disability

It’s ok… wait… ouch… ugh… wtf?! 

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 😉😉

Chronic Fatigue isn’t just about being ‘tired’, it’s about my whole life

“I’m exhausted” is all I say these days. I get so tired it drives me to tears; tears that are for more than one reason. I cry because I’m so physically exhausted I feel ill, and I cry at what that brings – it interferes with my personal, social and work life. Sometimes I have to let people down at the last minute because my energy has depleted before my day has even started. Even if I’d had a fab sleep, I could wake up feeling like I’ve been up all night. Some nights I am up all night. I hate sleepless nights, I’m always so bored. Nothing interesting on tv, most people are sleeping, even the dogs don’t wanna know. I usually spend the night lay in bed on my phone for an hour, downstairs for a bit, back up, then back down, all the way through til the morning. My phone will bing early usually, and when it does I get excited that the world is waking up. Might sound mad, but that’s how lonely I feel when I can’t sleep, especially when I feel like I could sleep. At the moment, regardless of the amount I sleep at night, I can’t get through a day without having to go and lie down. Sometimes I lie there for hours, other times I sleep for hours. Mostly I lie there feeling absolutely physically drained, while my mind feels foggy. Through the fog, every now and then, I am anxious because I have a lot to do and don’t feel like I have time to be lying in bed for hours. That, is the most frustrating thing. Knowing that the kitchen is a mess (still), that I’ve not hoovered for a couple of days (again), that I have emails and texts to reply to (that are almost a week old). When I’m feeling “exhausted”, I’m speaking literally. My body has just enough energy to keep me breathing at times it feels, and even breathing hurts during these flares, because of the soft tissue around my ribs. Those are the very bad days; which can last weeks actually. 

I was really made up that I did the 5k run last week. Then I was bounced off that high, right back down with a bang when I realised I wouldn’t be able to do it this weekend just gone because I was still in agony and my fatigue was keeping me in bed most of the days. So frustrating wanting to do things I can’t do anymore, or having to go at a slower pace than I’m used to. 

Anyway, if I am to try and remain positive, then I should try to stop looking at what I can’t do about it and see what I can do. I’ve noticed more recently that my imaginative and creative sides are becoming more prominent again. I’m getting more ‘light bulb’ moments with ideas that just pop up. Usually something I can do with the house. My most recent idea was to upcycle an old lamp I was going to get rid of. So I should try to encourage that more in myself at the moment I think, especially when I’m feeling this tired. It will give me something to do, isn’t too physically demanding, it can be an ongoing project that I keep going back to. I need to do something so I don’t go insane. And I don’t mean insane from boredom, I mean I need to do something, because at least I won’t then be doing nothing. Doing ‘something’ is better than ‘nothing’, for me anyway!