Thursday, 2 January 2014

Happy New Year- an oxymoron?

Happy New Year feels like a bit of an oxymoron to me at the moment. The thought of having another year of the unknown and suffering ahead of me doesn't feel like something to celebrate. The new year just emphasises the passing of time. The passing of time during which it's difficult for me to feel productive and do the things I enjoy because of constant symptoms.

Of course I start this year with the hope that this will be the year that brings improvements in my health, but that is largely not under my control, or anyone's control for that matter.

My health is a massive burden at the moment. There's barely an hour passes by that it doesn't cross my mind. How can I ignore something that is completely unrelenting? How can I forget about it when the pain and illness is constant? How can I forget about it when every time I move pain surges through me and every time I stand up I feel dizzy and sick?

I had a fantastic New Years Eve seeing a show up in London, it was amazing, and people couldn't have been more helpful- the staff member looking after me at the theatre, the bus drivers, the assistance people at the train station etc. Apart from a few hiccups with no ramp turning up to put me on one train and a bus stop being closed for roadworks everything went very smoothly. I coped surprisingly well given how ill I had been for the 3 days prior to the trip- I had been in bed a vast majority of the time and had spent the rest of the time on the sofa, with difficulty being sat up. Thankfully I was a little better the day before so able to get bathed and my hair washed giving me less to do on the day. On the day I felt undeniably unwell, but not to the extent that it hampered my enjoyment of the show (even if I was concerned I might pass out at one point), and I got through the day running on adrenaline and sheer determination (Not exactly advisable).

Having a great New Years Eve has unfortunately, predictably, meant a difficult New Years Day. I was in a lot of pain and feeling dizzy and unwell and struggled to eat much due to fatigue, but thankfully the memories of such a fantastic day have meant that I really don't mind. I have felt dreadful, but I'm well aware why and I'm definitely glad I went- I have no regrets.

It does however mean that I'm starting the year feeling very unwell, so the idea of 'Happy New Year' really doesn't resonate with me. 2014 simply follows on from 2013 and I wasn't miraculously cured at midnight sadly. I'm starting 2014 in a much worse state than I started 2013, anyone who has followed my blog for a while will know that my health has deteriorated significantly since I started blogging in February 2013. Even if things do improve this year, and I'm hopeful that they will, recovery is not going to happen overnight, and it's likely to be a challenging and difficult process, with repeated crashes in addition to any improvements, and I'm still going to be facing symptoms every day for a long while yet. Do I relish the prospect of all this ahead of me? No, not really. And that's the very best case scenario!

I would say the likelihood of me having to make difficult decisions about time out from Uni or going part-time this year is high. I'm not even sure I'll make it through the first few weeks of this term. That's not a nice way to start the year.. I'm mostly housebound at the moment, and spending significant proportions of some days bed-bound. I'm therefore starting this year in a situation I've never really been in long-term before. I don't know whether I can live independently enough to be away from home at Uni. I don't know whether I'm physically capable of my course.

I'm starting 2014 frankly scared about the future.

Most people are making New Years Resolutions- a lot of people are choosing to lose weight (I'm battling to try to keep my weight high enough to stay alive) or exercise more (I can barely walk). My only wish is to feel better so that I don't have to put my life on hold. I can't make that happen. I'm too ill and too underweight to do physio, my condition is still incredibly active, I don't feel able to increase any medications any further because of risk of side effects, cognitive problems mean I regularly forget to take my medications, I'm too tired and asleep too much to eat enough to put on weight, I don't feel hungry or thirsty so can forget to eat and drink, I'm teetering on the edge of depression so am losing motivation to some extent.. I'm reliant entirely on the underlying cause relenting. When that will happen is anyone's guess..

So of course I hope you all have a good year ahead of you, and I hope those with illnesses have positive changes in your health ahead of you, but do I think me wishing you a 'Happy New Year' will make that happen? No. I do hope everyone has a better year, but I wonder if I'm not the only one who is not relishing the prospect of 2014, despite being pleased to see the back of 2013!?

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