Sunday, 22 December 2013

Bit of an upward turn.

After a few more negative posts, I feel it is time for a more positive note. It is almost Christmas after all!!

I was able to get an appointment with a CFS/ME specialist last Tuesday (after pushing for it with my GP) and what a difference it has made! For the first time when speaking to a health professional about my condition, I felt they knew more about it than I did! He asked relevant questions, and practical things that I had prepared to ask his opinions about (such as special exam arrangements for university) he asked me about first, demonstrating that he had a knowledge of the sorts of things I could need help with. He also suggested a number of other supplements, as well as setting up a series of vitamin B injections, which I have heard from some people to be beneficial.

I could still find fault with this system I'm sure but today I won't because of the relief I feel after finally getting some help and advice from someone who understands my condition!

In other news, my university term ended just over a week ago and I am firmly back home preparing for Christmas. I've managed to do too much shopping with Mum but it has been so nice being home that I feel it's worth it. I feel a little more optimistic about next term, having just about managed this last one but there are maybe some aspects I need to work on, such as organisation, as I have 6 deadlines next term, although I hope to have 2 of those completed before I go back in January. Maybe 2014 will hold better things than 2013.

Friday, 6 December 2013

"So when your hope's on fire, but you know your desire..."

I'm a big Mumford and Sons fan, but unfortunately their songs aren't the most cheery. I felt that this quote fitted my predicament right now, but unfortunately I have no opportunity to be a "Hopeless Wanderer" - I don't need anyone to "hold me fast" as I've got an illness that does that anyway.

What on earth to do with my life??! I am faced with such uncertainty that I have forgotten how to plan. Events come and if I'm not up to it, they go unnoticed. As do I. And at the end of the day, what can I do with my life? All my dreams and hopes are being destroyed, and it's the little things that keep me reminded of my loss. I used to love singing. I was never that great but I loved singing at church so I could really worship God but now I sing one hymn at church and that's me exhausted. Music seems to require such stamina, and I really don't have any.

I had always thought that university and a fantastic, satisfying job were in store for me, but now I have no idea. Everything I can think of appears unattainable. And this isn't just me being unduly pessimistic - this is the reality. I want something to get me out of the bed in the morning, to make me hope for the future. So that's my desire, a bit vague I know. That used to be achieved by my degree but I'm not sure it is any more.

Tuesday, 3 December 2013


These last few weeks leading up to the Christmas holidays have led to me asking a few big questions about my life. Do I want to stay at university? Should I stay at university? And then the opposite questions which should be asked, as I have found that sometimes the answers don't match up.

Do I want to stay at university? - I think yes.
Do I want to quit university? - Also, I think yes.
But do I want to leave university? - Not really.

The estate agent who we rent our student house from is asking us to confirm whether we will be staying in the house next year. The first step was deciding whether to stay at the house here or go back into halls, as that choice is basically friends vs practicality and better health. I decided on the house, feeling that having friends nearby was a useful thing but the decision wasn't an easy one.

I then realised why the decision wasn't easy - I wasn't sure about staying at university at all. I was meant to sign a contract for the house last Saturday and I couldn't even make it through the door of the estate agent before I freaked out.

Which has led me to think about acceptance. Acceptance of situations is thought of as a healthy step towards feeling positive about things and being grateful for the life you've been given. I have been told various things from well-meaning people about their opinions surrounding acceptance. Some people say I shouldn't accept that I am very unlikely to recover, and some say that too much acceptance can be a bad thing.

But how am I meant to move on with my life without understanding and accepting my state of health? Maybe I will get better, but realistically can I plan for the >5% possibility? I have to think practically, which isn't something I really like doing.

I don't feel the unbearable fatigue any more than makes me unable to move, but I think I have just gotten used to it as all the symptoms I have had in the past only when I have severely over-done things are now constant instead of rare and I have developed new symptoms. Is this acceptance? My body has acclimatised and now all these aches and pains and weaknesses and everything else are part of life. I feel so old at 19, or at least my body believes it is way beyond the teenage years.

I also am amazed to think that it has been almost 11 months since my relapse (that I haven't recovered from by the way!). And that overall I have had CFS/ME for 4 1/2 years. That's crazy.