5th October 2019...
This date one year ago I travelled in an ambulance on a stretcher heading towards Leeds to be admitted to the NICPM from treatment for my FND and M.E.
I had no idea what lay ahead for me in the days, weeks and months I had ahead of me.
My time in hospital...
Looking back I wish I kept a diary of my stay rather than the occasional updates that I posted on here, but on reflection there was no way I would have possibly been able to do this. Initially my room was kept in near darkness; noise was kept to a minimum (I was also allocated the "quieter" bedroom - the one bedroom that didn't face out onto the main road), I had support with basic tasks; I barely left my room; the only people I saw where staff members and all the energy I did have went into my rehab work and just basic every day tasks which left absolutely exhausted and flared up my symptoms aka 'payback'.
I knew my hospital stay wouldn't be easy and knew it wouldn't be a magic cure either. It was much harder that I imagined not just physically but emotionally too. There where many times when I would just fall to pieces feeling as though I couldn't carry on and I just wanted to pack up and go home.
Most of the focus of my treatment was around my daily functioning and the pace of work was graded. So for example to start of with one of the goals was to tolerating having my blinds open in my bedroom and we did this in stages first letting in a little light for short periods; then gradually opening them a little more and for longer periods.
I regularly worked with my occupational therapist and on a daily basis I worked with the nurses and healthcare support workers. I also did some work with the physiotherapist once I was more stable physically.
One of the things that was established was a 'Daily Plan' which is a schedule for my day. This involved alternating between activity and rest periods with times for meals, physiotherapy, getting washed and dressed and 1:1 time with my allocated worker. Again this was graded gradually increasing the amount of activity I did for instance initially my morning consisted of waking up, breakfast, resting, getting dressed and more rest building up to waking up at earlier times and putting in activity periods and getting washed and eventually using the shower. That daily plan I still use now as it helps manage my energy levels and with pacing.
In the 1:1 time I had with my allocated worker a few times a day (my allocated worker was a staff member, usually someone who was part of my team, assigned to me for that shift - morning, afternoon and night). In this 1:1 time it was up to me how I used it. Sometimes I'd want to go out for some fresh air, paint my nails, do a jigsaw puzzle, we played a lot of Bananagrams too, or sometimes we'd just talk if I was struggling emotionally. But outside these 1:1 times the staff were always free should I need support.
Other things I worked on in hospital was being able to do tasks more independently, working on activities of daily living and getting off the ward. As part of 'graded exposure' I would spend time off the ward. Initially it was just to get some fresh air on the balcony of the ward or we would just outside the entrance to the hospital and this eventually this was built up to going for short journey's around Mandela Gardens; then into shops for short periods of time or on a couple of occasions (before the coronavirus) for coffee.
With the Physiotherapist we worked on my walking and balance and regaining movement and strengthening my muscles and core stability.
I enjoyed some of the groups especially Boccia. The girls on the ward at the time was was all quite creative so we'd do a lot of arts and crafts. The ward also received funding for an artist to come in and run a series of printmaking workshops.
Each week I had a MDT or multidisciplinary team meeting where the staff on the ward would meet together to discuss how I was getting on and I'd have an opportunity to bring up points I wanted the team to discuss and at the end of my MDT meeting I would go in to hear a summary of what had been discussed and I'd share my thoughts.
There where some aspects of my health that I did want addressing and I did ask for but they didn't really get done which is frustrating as I'm now how during a pandemic where I can't as easily have someone to sort out things like my chronic pain or migraines. I would have liked access to my advocate at times or access to an advocate of some kind.
All-in-all I am glad that I had the opportunity to go into hospital plus it was a long process to get there in the first place. and I did make progress and I managed to start doing things I never thought I could achieve like going into a shop or sitting in a café, pouring a kettle*, doing a jigsaw puzzle or climbing steps on the stairs.
Also the high level of support was much needed both on a practical level but also because it was what I was needing to get me stable and it was something I had been lacking in my care for so long since becoming ill.
The 1:1 times where helpful too and the opportunities to work closely with my Occupational Therapist and psychologist especially as well as the nursing team. I like how rounded and holistic the care was; that it wasn't just focussed on getting me physically well enough again but addressing my emotional and social wellbeing too. - Not many people realise that when you become chronically ill you don't just become physically unwell but it affects you emotionally too as does the social aspect of your life.
The psychology sessions where helpful in hospital too and from that I worked on my identity. Before I went into hospital I was ver wrapped up within my illness whereas now I see that my health does limit me but it's not the sum total of who I am and there is more to me than just being a chronically ill person. Hence why I changed the name and focus of my blog at the beginning of the year. I still do the odd health related post but there are other things that interest me too so I'll write about that too - the blog is about the whole of me; not just the one health portion. I think that outlook has been a huge shift between now and this time last year and I'm becoming more positive too.
Building up to my discharge a plan was put into place as to what care I would receive at home but unfortunately I came home during the lockdown so a lot of the planned continuing care hasn't happened but thankfully I have had access to some support which I'm very grateful for.
The transition from hospital to home has been and still is difficult (and not helped by coronavirus or the lockdown). I miss the girls from the ward but we do keep in touch. The social element really helped me as it was something that had been lacking in my life due to my health. It's also been difficult not having that high level of 24hr care. And it was hard going suddenly from that to home but they did try to transition me as much as possible to help me adjust (again not helped by coming home during a coronavirus lockdown).
Yes in hospital we did work on my functioning but more than anything it was education in learning how to live with M.E, FND and other heath complexities. I think what I learnt was the most valuable thing as it's something I can continue to build up and apply in my life and use. For example if I accidentally spend too much time on an activity now and go splat I now know how to prevent myself from doing that again but also how to manage that splat too.
(I also miss Lara the PAT dog too).
I still do struggle greatly with my health and I still have my dips and my good days and my bad days and I still require support to manage my health and day-to-day activities and I need the use of aids and adaptations.
I've found keeping to a daily plan/schedule helpful in managing my energy levels and ensuring I try to not overdo it. Mornings are a struggle and sometimes I do overexert myself on activities, but so does everyone; not just me and not just those with chronic illnesses. My daily plan is something I continue to work on and I feel is going well and I feel more confident with adapting as home isn't like hospital. I have appointments at times when I'm meant to have a rest period or I find I'm having a bad day in which I don't feel well and I need to adjust my activity/rest frequency. I also still need to keep in check my energy levels and remember to no overdo it.
These days it's a case of using what I learnt whilst I was in hospital, like setting a timer when I sit down to do something or just saying to myself "I can do that tomorrow" to manage my energy levels. As well as remembering to pace myself and also preventing or reducing as much as possible the payback/PENE* or exacerbation in my symptoms.
Keeping in touch with the girls I met is wonderful. Whilst we was in hospital we could talk about everyday things like swapping nail polish or the best things on the menu but equally for the first time I was able to meet other people around my age who were living with the complexities and difficulties of illnesses like M.E and FND and occasionally we could talk about that too which is something I hadn't really experienced before in person other than through letters to pen pals.
What I've learnt is that however difficult things get I can manage to live a life with M.E and FND. There may be times when I struggle to believe this but I worked so so so hard in hospital. I just need to know there the will be down periods, and that's okay and as a friend of mine would say that's when I just need to float until I can start swimming again.
* PENE - Post Exertion Nero-Immune Exhaustion, basically after exerting myself, even over the simplest of things like brushing my teeth on a bad day it causes me to feel absolutely exhausted physically and mentally and it flares-up my immune system so I get cold and flu-like symptoms.
* When I first started having seizures I had a seizure with a kettle of freshly boiled water in my hand resulting in severe burns and I stopped using a kettle after that incident and I was very anxious around hot things. My OT on the ward helped me overcome this fear and slowly and eventually I began to use the kettle to make my own drink (and drinks for others).