At a time when so many people are reflecting on the past year, and hopes for the new year, I feel like retreating into my own little bed-blanket fort. Because this year has been very hard, harder even than the years that came before. In truth I started 2016 with a lot of hope and excitement. In January last year my mum did a social housing swap – which meant I was able to move out of our old home which was on the second floor without a lift, and we moved into a beautiful new home which is much smaller and all on one floor. I was slowly getting better and I truly believed by the end of 2016, I would be celebrating New Years by going out with Martyn, that I would be back at university – that I would be able to prepare a meal for myself. That I’d be walking around in London.
Instead, this year has been even harder than the year before. I went through things I would never have imagined – I became so sick that I cannot really describe what happened to me without feeling so frightened when I think back to it. This year, my faith in healthcare was also shaken so strongly – I’ve always been a huge advocate of our healthcare system because publicly funded healthcare is a human right and a need, and of course I still am, but i could never have imagined that a section of society could be failed so badly and for so long by the health system due to political influence. I could not imagine a publicly funded trial, at a well known university (the university I was studying at!) would push me into such a state.
Around the beginning of 2016, I was at about 40% on the M.E functioning scale:
In 2016, after the trial, I was functioning at 5%. There were times when my health dipped to 0%. Perhaps reading this graphic below will give an idea of what happens to those at this end of the illness.
I was eating 2-3 Ella’s kitchen liquid sachets a day. I should’ve got a milkshake food replacement drink but was too ill to find out which one would be nutritious for me. (Over the past year despite eating so little I’ve only lost just under 2 stone – probably as I’ve been in bed all day so am not expending any energy.) My stomach would burn in pain as I wasn’t eating enough – and coupled with the fact that I have longstanding stomach condition from childhood which means I need to eat very regularly – it’s done a lot of damage to my body which I am now struggling greatly with.
Quite a few months on and with a lot of rest and ups and downs along the way – I am now hovering somewhere around 20%, which is severely affected.. just like I was back in August 2015. Sometimes I do feel even more unwell, and with any exertion I get delayed symptoms. When I do my blog now, I feel the post exertional effects for a week afterwards. I sometimes read for too long; I love reading more than any other thing in the world (except my loved ones and cuddly toys). Every time I see friends I am in all likelihood pushing myself as I become more unwell afterwards; but I do it anyway, even if infrequently, because I do not want to let this illness take away my friends and people I love and care for as well as everything else it has taken from me – that is too precious and important to me. Over the past few months there have been many ups and downs, on bad days it is worse, but I am hoping this baseline stays stable. I have been filling in a M.E/CFS electronic diary which only requires me to press a few buttons a day, and so is relatively ok to do every day – and that has also confirmed my physical baseline last week as 20%.
My New Years wish is to get better. That is what I wish for myself and for others for whom illness has taken their dreams away – to be well enough to have plans and dreams again. I am only in my 20s and there is so much I still want to do. I wish to get my independence back again and to be able to look after myself. To walk into Croydon, get on the tram and go into town – or even to do this in my wheelchair often. To be outside and live my life. To wake up and do all the things I want to do that day, knowing my body could do it. To do the things that I would have taken completely for granted just 2 years ago. And I wish that day will come soon; I hope that 2017 brings more hope and that all these wishes come true.
For some of us, New Years resolutions can be upsetting when we are so much sicker than our peers – when other people write up lists of things they have achieved or would like to achieve or do better and we physically cannot do even some of what is on their list, it is so easy to compare or blame ourselves and feel a lot of despair.
We do deserve to live our lives as fully as others, but we cannot, and only those in our positions know how very painful it is; it is only natural to compare and wish for things to be different. I’ve learned the hard way it doesn’t help my health to compare to healthier people (but still do it anyway!) – in those times I switch off from social media and try to focus on just what I can do. I don’t have a New Years resolution to make myself a better person – I try to remember I am enough as I am. I just hope for better times, and try to stay as happy as I can. I went into the new year huddled up in my blankets, feeling so grateful to have Martyn by my side – he is my shining star. And books bring me a lot of happiness, I’ve spent the past few days reading when I can, although mostly audiobooks. (Harry Potter on audible has been amazing – Stephen Fry’s narration just takes me straight to Hogwarts ⭐️).
I think this is me especially when in my healthier days:
(Reposted via http://bookgeekconfessions.com/)
And finally, Violets wanted to make an appearance… here she is, with her sparkly pink eyes. She’s relatively new to the house but has already made lots of friends with her cute personality and oodles of sweetness 💕🌟