This week I’ve had to adjust the goal posts once again. One has to be flexible when you have a condition like CFS/ME. In all honesty it’s been a bit of a write off but I must count my blessings because, compared to the summer of 2011, things are really quite peachy.
I’ve managed one shower this week so I’d advise you to not get too close…
I could sit here and overanalyse why this week hasn’t been so good but it’s quite obvious really. During my week of baking I must have got overexcited and been running on adrenaline for part of it. My hair is also a little bit longer now so washing and brushing that will take some getting used to, as bizarre at that may sound. I have to now be careful not to trigger a full blown relapse. This is just a slower week, or a setback if you like.
I had a bit of a tantrum about it all this week but sometimes I believe the best thing to do is have an almighty moan and a huge cry and throw all of your toys out of the pram. Who would honestly be completely content with such a life?! I had had enough. This illness is so incredibly frustrating; more so because I am supposed to have come so far already and therefore count myself as lucky. Nobody with this illness is lucky.
I thought this might be a good time to post something I wrote back in October. It was when I decided to start this blog to get things out of my system. Feel free not to read on. My Foggy Friends will have read it already and I’ve probably posted things very similar anyway (Mr Brain can’t remember and doesn’t want to check.) It’s pretty long…
“15th October 2012
Sometimes there are dark days for no particular reason other than I have had ME for over two years.
My whole life has changed in the last two years…perhaps for the better in some areas. I was a bit of a drama queen, a hypochondriac. I have however always been thoughtful and so I suppose I do not get bored by simply watching the world go by. I am out of the rat race. I can appreciate life in a way others can’t. An old friend used to tell me to put things in perspective when I was in a tizz about an essay or about being 5 minutes late for an appointment. Goodness me, how things have changed…I have become more laid back in some ways, despite the anxiety that can come with chronic illness. I have learnt to love myself in a way that I had never managed before.
As ME sufferers, we are the exception to every rule. We are the underclass of society. Ours is a hopeless cause. It all seems so bleak. As human beings we feel the need to reassure people that things are okay and they will get better. The cold hard truth of ME leaves people uncomfortable and lost for words. I feel we are so hard done by.
Saying these things is not us feeling sorry for ourselves or being negative. Sadly it is the truth. For us, more than for than those without ME, things aren’t set in stone and almost everything is uncertain.
I am angry for the friends I have made along my ME journey. You do not deserve this illness. Nobody does. You are amongst the most wonderful people I have ever ‘met’. Infact you are my inspiration. I will, and can, keep going because you have, and you continue to do so.
I am not the type of character to feel sorry for myself. I plod along with the rehab the CFS clinic has advised. I stick at it. It is working, slowly. Even yesterday I kept going…I have worked too hard and come too far to stop now. I look on the bright side and make a joke out of my situation…being overtaken by your 90 year old neighbour is amusing and when your greatest achievement of the month is being able to boil yourself an egg why not smile about it?! Progress is painstakingly slow. So slow and sometimes there is no progress at all, perhaps the opposite. But there is sometimes progress. You either laugh or cry. I choose to laugh on the whole. But my goodness, the sudden shock of realisation that hits me every now and then is horrific. What has become of my life? It is soul destroying. Our situations are so unfair.
I was in the process of applying for a job with Barnados and the Downs Syndrome Association when I became ill. Instead now it is ME charities who I will always hold close to my heart.
Some understand ME better than others. I know it must be hideously difficult. It is the misunderstanding of our condition that hits a nerve with me. It is becoming a chip on my shoulder. I feel insulted that people say to ‘think positive’ etc. Do they not know me at all? Gone is the Anna that my friends knew and I know that that is hard for them. “What is new with you?” people ask. I don’t know the answer. To share what little progress I make can make people think that my M.E journey is over; that I am better. Progress takes months and years and is always, for me, a case of one step forward two steps back. People are confused when one month I tell them that I have made improvement and then the next month I am confined to bed again. Everything is a catch 22.
I count myself as one of the lucky ones. I feel blessed that I can always, always, see the silver lining. I did not become ill until after I had graduated, and it was before I had started full time work. I had moved back in with my parents. I was on a sort of gap year working part time before finding a ‘proper’ job and moving out. I suppose I am still on that gap year…
I am not the person I was two years ago. Nobody is regardless of health, I understand that. But I feel so far removed from that ‘Anna’. I do not even look the same anymore. I have no recollection of what it is like to not be ill everyday.
I am content. I believe, or feel the need to believe, that everything happens for a reason. We are all in this together.”