Thursday, 31 December 2015

Update: new year and hospital stay etc

It's been a long while since I've sat and poured my heart out here on my blog, but a lot has happened in terms of my health in recent months, and as it's New Year's Eve (a classic time for some reflection), I think the time has come..

On 7th October I was very suddenly and unexpectedly taken very seriously ill whilst at university. It was a very scary experience, and one that I will never forget. I haven't taken a single normal step since then, and there has only been one day since then (22nd October) that I have taken any independent steps at all. Pretty terrifying..

When I was initially taken ill, I found out what it's like to be lying in Resus causing all the alarms to go off, and I never want to go there ever again. In recent months I have discovered what it's like to lie motionless, unable to move or communicate with the people around you. I know what it's like to have a doctor causing you very significant pain (to try to get a response) and be unable to even flinch. I've been through things that were fairly traumatic to be honest, and it's difficult to move on from them.

I was in hospital for 69 long days- nearly 1/5 of 2015. I met some amazing people- both fellow patients and staff. I was looked after brilliantly- not faultlessly, but brilliantly. The staff tried hard to do their best for me; there were things to do with communication, policies, discharge planning and lack of answers etc that frustrated me beyond belief, but the individuals involved in my care (physios, nurses, healthcare assistants, doctors etc etc) were mostly amazing. Unfortunately I was very broken, in a very far from straightforward way, so despite being sure in the first 24 hours that I'd leave 'fixed', it became clear in subsequent weeks and months that that simply wasn't going to be the case.

When I first arrived onto the neurology ward after being assessed, I was in a bad way. I had to be slid on boards between beds, it took 2 people to get me into a wheelchair, my jaw was seized shut, the only way to get anything into me was intravenously, I had limited mobility to even move in bed, my blood pressure was through the floor and I felt incredibly unwell. I've come a long way since then, but I still can't stand without triggering problems, I'm very tired and sleepy, and I lack independence.

The thing that I really struggled with was the indignity. You don't expect to suddenly, with no warning, need help with everything, including washing and dressing. Bed pans, hoists, slide sheets etc are just not things you expect to suddenly require. It's scary to be hanging in a hoist feeling complete out of control of both your body and your life. I'm glad I'm so small otherwise they'd have had to hoist me etc far more frequently. I found all that side of things enormously difficult- you just don't expect to become immobile and lack any independence at the age of 23. I'm so incredibly grateful to be largely past that stage!

I'm currently a full-time wheelchair user, and it has made me realise how incredibly fortunate I had been to have about 20m of mobility and the ability to climb 1 flight of stairs. Both were with difficulty and pain, but to be back in that situation now would be incredible. Places aren't particularly accessible when you have limited mobility, let alone when you have none..

I think with significant illness, it's always difficult not to look at all you've lost. Chronic illness steals a lot, particularly when it worsens over time. I had a lot to be thankful for before all this happened, and I don't think I realised that enough. But at the same time, at the moment I'm looking at the challenges my recent health problems have caused, and I realise it's only natural. Before I mourned my healthy life, now I mourn what had become my 'new normal' too.

We're now entering 2016 and that's scary. Some of the challenges I have faced during 2015 have been so unexpected and unimaginable that it's hard not to be a little concerned about what 2016 could throw at me. It's not going to be an easy year, as I still have my rehabilitation to go back to, and with all I've been through when trying with physio so far, it seems highly unlikely that it will be a breeze!

I need to get used to standing again, redevelop some balance and learn to walk again. I also hope to regain greater control over my body and my symptoms with the help of my medical team. In october I learned to stand and take steps and got to the point of taking independent steps on one day, but then had a setback and had to start the process of learning to stand and take aided steps again the next day. Over subsequent weeks I eventually reached a point where standing was making me too ridiculously unwell, and I was discharged from hospital as a full-time wheelchair user, but able to make unaided transfers a majority of the time. I want to get back to the situation I was in before all this happened, and I know it's going to be a gruelling and painful process, with plenty of ups and downs!

Yes, 2016 scares me. But it's coming whether I like it or not, and I just have to hope that this time next year things are looking remarkably different. For now, I just want to sincerely thank all my friends and family for their amazing support during the challenges of 2015, and thank you in advance for helping me through the challenges to come. I'm incredibly lucky and grateful to have such amazing people around me, and I honestly couldn't have coped with all that life has thrown at me recently without you. Thank you for the little messages of support, for the shoulders to cry on, for the hugs, for the cards, for the chats, for keeping me in touch with normal life, for celebrating my successes with me and giving me distractions from all this rubbish. To literally everyone who has touched my life to any extent in recent months- thank you so so so much!

PS I know I haven't discussed diagnoses etc, but that's a post in itself as it's all complicated, and to a large extent the labels basically mean 'we know you're very ill and debilitated but medicine doesn't know enough to explain how or why yet'- much like my CFS really.. I do have explanations, which I'm sure I'll share with you all soon, but there are also lots of unanswered questions, and we don't know to what extent my pre-existing conditions (CFS/NMH) are influencing things. I seem to have now accumulated nearly a whole alphabet of diagnoses- eek..