The last blog post I wrote I entitled ‘A Long Overdue Update’ and talked about not posting for a while. I seem to have outdone myself this time round as in two days time it will be a year since I last posted anything (though I have multiple draft posts sitting unpublished). I sort of lost interest in blogging for a while as I was finding the experience too exhausting and didn’t really know if there was much point in it and whether it was actually interesting for anyone to read. However as I’m struggling with keeping up with some letter writing, email replying, messaging back to people at the moment I remembered why I first began writing and thought it was about time to blog again and write another post. I’ve also learned since last blogging it doesn’t matter if a blog post is not written in one sitting either so in a round about way I’ve given myself permission to try writing again. Looking back over previous blog posts is turns out a lot can change in 363 days!
My most exciting and biggest piece of news is I have moved house! As time was going on and I was deteriorating more and more, living in my Mum’s house was proving increasingly unsuitable. I was becoming trapped within one room as I couldn’t reach the bathroom, kitchen or living room on most days and Rollo (the wheelchair) just didn’t fit in the house, not to mention odd steps dotted throughout and just large amounts of hallway to try and get through. I also couldn’t get carers. As the house was rural none of the agencies would cover that area and advertising for potential PA’s got little response. My Mum had to leave her job to look after me and again this was not a solution that would work long term- after all we all should be able to have our own lives. Fast forward several months and several scary conversations involving the dreaded words ‘care homes’ (they should never be mentioned to young people and the fact that there are young people trapped in them is horrendous, but that is a whole blog post in itself…) I decided to apply for an accessible house and said I would take one wherever it came up throughout Scotland. I knew this was a massive risk as I could end up absolutely anywhere however things were getting pretty desperate and so that’s how in March this year I came to find myself surrounded by boxes in a new flat. After an interview process a housing association decided I was their most in need person on their books and offered me what has turned out to be an amazing flat. The whole place is wheelchair accessible. The doors and hallways are wider for wheelchairs and mobility aids, the kitchen has lower level surfaces so you can cook, prepare food, use the sink etc. sitting down and the bathroom is also fully adapted. I have a small garden with ramped access and (once the landlord gets it working) an electronic door answering system. It has been incredibly exciting. I am now no longer trapped so much and can move around the house. I’ve had great fun as well choosing where furniture will go and trying to add as much colour as possible. I was extremely fortunate to be given most of my furniture from two charities who help people who have ended up in situations like me and have moved due to health issues. While I don’t know anyone in the area and in some ways this has meant more isolation, I am constantly reminded by little things here and there that moving was the right decision.
With moving house my Mum is no longer my main carer. As I have moved between councils I am in what is termed a ‘transition stage’. This involves my old council funding my care for three months while my new council does a whole new assessment and decides what to offer me. This has caused many issues with my old council which I won’t go into great detail here but basically after pressure from my MP they have agreed to fund 2.5 hours of care a day (despite acknowledging I need around 5-7 hours) and won’t fund any hours for me to have someone with me so I can leave the house. They’ve also selected that I receive council carers who mainly deal with elderly people and so have a completely different skill set for what I need at the moment. However I am trying to grit my teeth and get through it for a few months knowing that things will change for the better- I’ve just got to stick it out. At the moment I have carers turn up four times a day and as it is through the council I don’t actually know who will turn up or what time, for example in the last two days I have had eight carers, six of whom I hadn’t met before and also had two forgotten visits as I didn’t show up on the system for some reason (which for me results in missed meals and not being able to get dressed). Lunch time visits can range from 11.30-2 and then someone may turn up to make tea anywhere from 3-6 with people being put into bed between 6-10pm. I had heard about these systems and them not really working on the news and in documentaries but it is interesting being on the other side of it and experiencing how much room for improvement there is. I think a potential new dream goal would be to set up a care agency that acknowledges people have lives to lead and want some autonomy! It is also clear that the carers are used to dealing with elderly people with dementia who are on the deafer side. It tends to be assumed I don’t have capacity and I’m told what to wear, what to do and what to eat which is immensely frustrating. I do have two carers though who have been fantastic so it is not all bad. Once my new assessment is put in place by the new council I will stop using council carers and get to hire my own team of PA’s either completely independently or through an organisation. This will make a big difference as I get to be the employer and have a lot more flexibility of choosing my hours and what I need help with. I went to a meeting last night to meet some PA employers and hearing how much better it is to be your own boss in this regard and employ people that you want to work with you, as well as it being more sort of flatmate/friend helping out rather than ‘carer- cared for’ sounds so much better!
Moving has also led to a change in health teams and plans moving forward which has gone really well. Since last posting on this blog I’ve been diagnosed with a condition called Ehlers-Danlos Syndrome. It is a genetic condition which effects the bodies collagen (a good way to think of it is the glue that holds bodies together), it is the reason why I developed dysautonomia and keep having strange injuries etc. My funding for the return to London for my long term hospital stay never got approved although it is something that the NHS board are still ‘considering’. Moving to an urban area though I am nearer major hospitals and they have been keen to deal with things better. I’m finally being seen by a neurologist who wants to try and find the missing pieces of where we still don’t have health answers. I’m going to be a guinea pig for a while with lots of health tests and she has made it clear that we might never get a name for the condition we’re missing as it might be too rare but it is worth trying to find out and see how things can be made more bearable too. After my third hospital admission in a month the hospital here have trialled me on some new medication that they hope might help with my heart rate. It is too early to know yet if it will work and they want to slowly increase the dosage but I am really hopeful. I also finally got a full MRI that was requested two years ago by London but not pursued by the previous hospital which showed up a spinal tumour which I’m waiting to find out if it can be just carefully monitored at this stage or needs some treatment. Also just to add to my new health team my new GP is fantastic and put me straight back onto some medication that worked really well for me a while ago but which for funding reasons got stopped. So while on the health front things are significantly worse than a year ago for the first time it feels that people are really trying to do something and acknowledge that I cannot go on living with these symptoms without trying some more tactics- especially as they were at the stage of becoming increasingly depressing.
Later this week I will also be submitting the next stage of forms in applying for an assistance medical alert dog. My new consultants have all backed the application from a medical point of view and my landlord has given permission for one to be in the house too. I’m not sure how much of a chance I have but everyone who has been involved in the process so far think it would be a really beneficial step forwards.
Away from all things medical the last year has seen me finally start to begin managing to crochet after lots of practice attempts and I finished my first craft project. I’ve also started some occasional ‘professional reading’ for publishers which basically involves being sent advanced reading copies of books to review and therefore suits me really well especially as I can do it in times that work for me.
I’m at the very early stages of trying to set up my own charity to look at tackling isolation of people with chronic illnesses. Before getting ill I never realised that there was such a large group of people who are often completely housebound and become often forgotten about, now I speak to people often who have not been able to go outside for months, haven’t spoken to people for weeks and sometimes not seen friends for years. Having got involved with an Inclusion Scotland project looking at the experiences of people who require adult social care this has further highlighted what a major issue this is. However this is very much in the pipeline so I’ll leave details of this for another post.
Hopefully it won’t be another year before I post yet again!