I always struggle a little at this time of year. I guess we all tend to become a little reflective at this time, looking back on what we have achieved, or otherwise, in the last 12 months. What aspects of our lives have improved and which have become worse? As well as this, it tends to make me reflect on life in general and to notice the passing years and wasted time.
During the last year I have reduced my hours at work – this is the first time in my life that I have ever been a part time worker. This was definitely the right decision for me, although my MS has progressed further, to an extent that I’d probably benefit from reducing my hours further. Unfortunately my finances don’t allow for this at the moment.
The last few months at work have been particularly challenging and by the end of December my symptoms were so overwhelming I was forced to take some time off. I am back at work on Monday and although looking forward to seeing my work team and getting back to”normal”, I have a lot of worry about whether I can cope. Unfortunately this worry is disturbing my sleep, contributing to my fatigue and making me feel worse!
I had a telephone appointment with an Occupational Health nurse in December – she was supportive and helpful, but overall, I’m not sure I gained much from it. She has made some suggestions about changes, or “reasonable adjustments” that could be made to support me at work, but none of them really solve the problems I face. The building I work in is not disability friendly at all and I don’t think there’s much I can do to change that. At a time when public sector workers are under a resumption of pressure, austerity measures and huge workloads, there’s no way I can reasonably request to do less.
On the plus side, I am now receiving the Daily Living Standard Rate PIP (Personal independence Payment), for which I am very grateful. I also have an appointment this week with an Occupational Therapist from the Community Neurology Team, to provide advice and see whether there are any adaptations or equipment that could help me at home.
This time last year, I was managing well in my little house. I live in a small 130 year old terraced house, with an exceptionally steep staircase! Friends often comment on how steep it is, with very narrow treads, but I’ve been determined to push through and keep using them. Over the last year, the stairs have become more and more challenging for me. Going up, I feel reasonably safe and usually climb on all fours. Coming down is another matter altogether!
I fell down stairs (from about half way) a few weeks ago and since then, do not feel safe when coming down the stairs. I have been thinking for a while that need to move to a bungalow or a flat and my recent experience has confirmed this for me. I feel very sad about this …I love my little house and I love where I live …but I need to feel safe and independent.
I have a personal Instagram account and as usual asked the #BestNine app to find my most popular photos of 2019. This year my life seems to have consisted of family and finger nails! Where are the nights out, the holidays, the weekends away? Where are the day trips, visits to galleries and exhibitions? Where are the cocktails and journeys on the 192?! Where are the gigs and festivals? Where are the protest marches and rallies? … I want to go back to my old life …fuck you MS.
If you’ve read this so far, thank you for indulging me. I know I sound like a whinger and I promise I’ll snap out of it soon! I have much to be thankful for and when I reflect on 2019 with my positive glasses on, this is what I find …
- My wonderful children and their equally amazing partners 👫🏼👩🏻🤝👨🏼
- My fantastic brother, sister, their partners and children ❤️
- My wider family 🧡
- My kind, supportive and loyal friends 💙
- A job I love with the best ever colleagues 🖥
- My beautiful cats! 🐈🐈
- My little house and my local community 🏡
- I can walk and talk and take care of myself 💁🏼♀️
- I have a plan to improve my life … HSCT here I come! 💉
- The amazing support and efforts of family, friends and strangers alike, in helping to raise the funds needed to pay for my treatment 🙏🏻
Happy new year everyone!
