Tuesday 22 March 2022

Another little update

Since my last update back in June a lot has happened.

Firstly I had a nice Christmas. It was quiet and low-key which made it much more manageable especially for my M.E. Also over the Christmas period it was good to see my wider family who we don't see often including two of my cousins who I haven't seen in several years.

Health update

My health has been going downhill. My M.E is much more of a challenge; I think it's just been an accumulation of events and my body has struggled to recover before I hit the next hurdle. At first I thought that the state that my M.E is in now would be temporary but months on of feeling permanently exhausted and struggling to function I'm now having to accept that this may be my 'new normal' from now on. However what has help this time compared to previous declines with my M.E is some of the things that I learnt during my hospital admission in Leeds. So now I do more low-level actives, do activities for shorter periods or break them down more and have more and stick to my rest periods and daily schedule.

On top of that I've developed some additional neurological symptoms which my FND neurologist is part of condition which can alter and new symptoms can develop. These new symptoms include speech difficulties, increased muscle weakness and also increased problems with my nerves - the latter two making my double vision worse so I'm now back under the hospital for that. 

I also have a new nurse who is lovely. She's from the 'Chronic and Complex Team' so she's going to support me to try and get some things sorted for me ad come up with ways to reduce my hospital admissions and get community care and refer me and co-ordinate my care and work on my behalf with people like my GP.

Another update is the confirmation of my catheter operation. It's been cancelled a couple of times due to my complex needs but it's now confirmed and I'm due to be admitted on the 12th of April with my surgery being on the 13th - they booked a bed for me so I can travel the day before as otherwise I would have had to travel in the early hours to be at UCLH for 7am on the 13th! I'm nervous but looking for to the benefits having a catheter placed will bring.

I also now finally have a hospital profiling bed at home and my new nurse has prescribed me a hybrid mattress which has air flow in it which is massively helping with my pressure areas and my bed is making life much more comfortable and giving me more independence.

My care package

Yes another update is that I now have my care package from adult social care along with a good social worker and fab PA (I'm needing some extra PA's so hopefully I will get some extra people come along soon).

YouTube & my blog

I absolutely love my YouTube channel. My goal at the end of last year was to get to 100 subscribers and this year I wanted to reach 200 but I'm very almost at 200 subscribers already which is so so lovely. Seeing my subscriber and video watch count numbers grow really does make my day and motivates me to keep going as having a YouTube channel alongside my health problems, especially my M.E is really really hard and at times it is struggle.

I've also had a lot of success with my recent vlog video that I did with my PA Diane and I had a lot of positive feedback and comments and interaction with people. Also the recognition from the M.E Association from this video has been amazing in terms of how my blog and YouTube channel help to raise awareness of M.E.

Blog wise the M.E Association have chosen me to become one of their M.E Champion Bloggers which the recognition of the work I put into my blog and to raise awareness of living with M.E feels amazing.

A card with a patterned rainbow coloured in. Below is the original drawn design of the patterned rainbow with a pencil and pen to the side to the image.

Other random updates

I continue to be an ambassador for the Chronic Warrior Collective and I'm part of their 'Extra Card Crew' - sending mail out to those having a tough time. The CWC has also asked me to be part of their 'Artist Crew' to design cards used by those in the Extra Card Crew and with their wider projects and in the recent pack of cards I got from the CWC it was lovely to see two of my card designs have been used.