It’s been one of those weeks again, my CFS has flared up and decided to make me look like the laziest person on earth. The last two days have been spent in bed, unable to do anything because of the exhaustion and pain. I hate feeling like I’m lazy but I just haven’t been able to move, so the washing has piled up again, the kitchen needs cleaning and so do the bathrooms. My Fiancé has been doing as much as he can but he’s busy with work so at the end of the day it’s down to me to catch up on all the chores which will no doubt leave me crashing again, it’s a vicious cycle.
All I’ve managed to do today is have a bath which is so frustrating, and it’s made me ache all over just doing that. It’s so depressing not being able to do simple things for myself like wash and get dressed, it’s a normal part of the day and for most people takes no energy but just that simple task leaves me out of breath and in pain. I can’t even remember what I’ve eaten the past few days because I’ve been sleeping most of the time and just grabbing whatever in between which doesn’t help. It seems wrong that my own body doesn’t care if I’m eating but all it cares about is sleeping, even if that means no food or drink for a whole day.
It makes it worse when professionals come out with “It’s your brain making you think you’re tired and in pain, it’s just your brain signals getting mixed up” because the pain and exhaustion I feel is not in my head, it’s in every part of my body, every inch aches and feels heavy and without energy. This condition is so misunderstood and under researched that the amount of people who have never heard of it or just tell me I’m lazy is unbelievable. For a condition which is so debilitating, it’s hard to understand why there is not more work being done to discover the causes and treatments. I don’t want to lie in bed all day neglecting my house and Fiancé, I want to do normal household chores without sweating like I’m in a sauna and having to sit down because my legs are shaking and aching so much. I don’t want to sleep a whole day away without food or drink, I don’t want to hurt all over and feel exhaustion in every inch of my body.
CFS is such a difficult subject to explain and I find myself getting more and more frustrated when people say “Just get out of bed and you’ll feel better” “Have a wash and you’ll feel more awake” “Go for a walk and you’ll feel better”. It’s all rubbish, none of it makes me feel better. It is the worst feeling in the world to sleep and feel no better when you wake up, it’s horrible when sleep doesn’t refresh you. I wake up every morning just as tired as when I went to bed and it never stops, I sleep and it does nothing. It comes to the point where you just don’t know why you bother sleeping at all when it makes no difference, but then your body just decides to sleep anyway.
People ask me “Why are you so tired if you haven’t done anything” and it makes me so depressed and angry because I can’t answer the question, it makes me feel fat and lazy, it makes me feel like the scum of the earth when I see people working twelve hour shifts and I can’t have a bath without needing to sit or lie down after. What is the point? Why am I on this earth if I can contribute nothing to society. Even writing this, my hands and arms are aching and my eyes are drifting shut again because I’m exhausted and the sad thing is, I’ll wake up feeling exactly the same.