Lazy [insert sweary word here] disease

I was talking to someone yesterday who's Mum has CFS and it struck me how people with Chronic Fatigue Syndorme often have to fight just to have their condition recognised, acknowledged and understood. Even GPs lack understanding, often misdiagnose or underestimate the illness. I have sat in doctor's offices before and been asked if I really needed the wheelchair, or why I wasn't getting better. Friend's have asked if I wanted to get well, if I was trying. I wonder how many people answer "Actually, you're right, I'm just damn lazy - if I just tried a bit harder, I'm sure I'd be pain free, healthy and active in no time at all! "

I don't know anyone that would. I can also confidently say that I don't know a single person with ME who  is lazy. Not one. And here's why:

Yesterday I did a three hour shift at work. That might not sound a lot, and to most it isn't and would only make up a small part of their activity for the day. But for me, I was exhausted before I even got there. I woke up feeling sick and shaking, unsure if I was even going to be able to get there. All the adrenaline, stress and worry from starting a new job and wondering if my health was going to cope flared up my symptoms before I even left the house. But I went. And I managed over an hour doing the busiest job in the shop, on one of the busiest days of the year while I was still trying to get my head around what was actually going on. And then I felt awful. Really awful. Shaky, legs felt like they were going to collapse and I knew that if I kept going I could really do myself some damage. I also knew that I had a baby boy at home that was going to need me all this week while Daddy is at work and I coudln't afford to be reckless with my health.

But I still didn't give up. I still didn't go home. I went and spoke to my manager (who was one of the best I have experienced in dealing with health issues at work) and said I was struggling and we agreed a plan of action. I was to do a quieter job for the rest of the shift and next week I will be trained on the tills where I can sit down and don't have to run around.

I finished my shift. I came home exhausted and sore but happy. And I still managed to bath my Son with Ben, I still managed to feed him and settle him to sleep (Ben took a turn too!) and do the night feeds (which are getting less frequent and quicker! SO grateful for that!). And today I will battle with my desire to clean the kitchen, tackle the pile of washing and hoover and tidy the house. I won't do those things, I need to fight not to do those things, because for the whole day Isaac relies solely on me. I am exhausted, my legs are achy and dragging on the floor, I've had a wicked headache this morning, throat is sore and glands up a bit. I feel like I could crawl up in a ball and sleep. But I won't, I'll rest when I can and I'll do what needs to be done to get through the day.

I will suffer more, fight harder and use up more energy than any healthy person does in any given day. And at the end of it, I'll have less to show for it but it'll be worth more. And I'll keep on doing that, I'll keep on stepping out of my comfort zone, resting when I don't want to, giving up the things I want for the things I need. I'm going to keep fighting to make the best life I can with what I have because the alternative is completely unacceptable.



PS I just want to make it clear that it has taken over seven years of doing this, of fighting and learning and struggling to get to this point. At times, my daily limits of activity would have been to get up and dressed. There are times when I needed help to do even that.