It’s MS awareness week again and I can’t help feeling a bit grumpy about it.
I’m painfully aware of MS already and don’t feel the need to share my “journey” or read about anyone else’s!
MS awareness week
Lockdown 2? Lockdown too!
The nation is divided over “lockdown 2” Some people believe it’s essential to reduce the dreaded “R” number and lead us back to covid safety. Others are worried about jobs and the economy, and the impact that will have on people for years to come.
Friends and colleagues are wailing in despair all around me about new restrictions but to me and thousands of disabled people around the country, a second Lockdown makes absolutely no difference whatsoever!
MS, fear and Corona virus ….
My mental health is usually pretty stable. Despite living with MS, I manage to keep cheerful most of the time, count my blessings often and don’t allow dark thoughts to fester.
Since the world’s gone mad due to the corona virus, I find my mental health has deteriorated and I don’t recognise new feelings, stresses and worries.
This has little to do with self-isolation though. The average MSer is equipped to deal with staying at home all the time and most of us don’t notice much difference! I’m used to not seeing family and friends for weeks at a time and can usually keep myself occupied and connected through social media, WhatsApp groups and the phone.
What’s causing my mental health to suffer is the extra layer of fear in these dark times. As a disabled person I experience fear every day. Fear of falling and being unable to get up, fear of not making it to the toilet in time, fear of progression and the future……………
Traumatised by lunch ……
Is it just me, or does something simple like going out for lunch leave other disabled people traumatised, needing days to recover?
Why is it so hard just to go into town for a nice lunch and why does the effort involved reduce me to a gibbering wreck, wanting to pull the covers over my head and stay in bed for the weekend?
The plan this Friday was to get the bus from work and meet my siblings for lunch. My sister agreed to meet me from work and supervise the bus journey and it should have been easy.
On the loss of resilience ….
Is it me or is living with MS really hard?
Usually I shrug off negativity as it’s not helpful and I’m naturally a positive person, but just lately I’m struggling to cope.
It feels as if all my reserves of energy and resilience have depleted and I don’t have the emotional strength to fight on anymore. It feels like I’m on the edge of an emotional tightrope, with one side being strength and courage and the other side despair!
When MS gets a little bit harder …
I haven’t been officially diagnosed with SPMS, but I presume this is what I have as I haven’t had a relapse for years. I used to lurch from one devastating relapse to another and would never know when it would next strike me down.
Instead, my MS now behaves like a silent assassin, slowly and gradually eroding my ability and independence.
Lately, for example, I’ve been unable to get up and walk the short distance from my bed to my en-suite bathroom. I have to fumble about in the dark, trying to get on my scooter to get there which is noisy and time consuming.
Work is getting more and more difficult too as I’ve lost confidence in transferring from my scooter to my office chair and back. I now have to rely on colleagues to hold the scooter steady while I summon up the necessary “oomph” to manage it. They insist they don’t mind but I feel like a burden and imagine all sort of conspiracies when I’m not around.
You booze, you lose ……..
I fell off my Travelscoot last night whilst transferring from the toilet.
I have an accessible en-suite bathroom at home with handrails everywhere so it’s usually deliciously easy to transfer. Last night the scooter moved back slightly as I sat down, so I was perched precariously on the edge of the seat. I felt myself slip off and landed with a thud in the canvas basket underneath with my head firmly wedged under the seat.
Resilience and Multiple Sclerosis …..
I’ve just finished reading “Resilience in the face of multiple sclerosis” by Brandon Beaber MD and feel inspired, and with a new sense of hope for the future.
I got my free, advanced copy of the book before its release, as Dr Beaber generously tweeted about this offer to spread the word.
As a psychology graduate, I was interested in the concept of resilience and have often pondered why we all react so differently to a life changing diagnosis such as MS. Why do some of us fight relentlessly and remain positive while others sink into depression and despair? Why do some of us adapt and live happy lives despite our disabilities while others are driven to suicide?
Home Sweet Home ……
I just got back from a break with my family and although it’s always nice to get away, I’m relieved to be back in my accessible bungalow!
We were staying with relatives and I knew it would be challenging for me, but I always underestimate how disabled I feel when I’m not at home. I had no choice but be carried up the stairs by my husband and brother and the terror this evoked made me want to stay in rather than venture outside. I got out by bumping down the stairs one by one on my bottom while my scooter was carried over my head.
The shower was also difficult, although not impossible, thanks to my husband being tall and strong but it was frustrating having to be taken to the toilet rather than coming and going as I pleased.
This got me thinking about all the MSers trapped by inaccessible accommodation.
Home should be the place where you feel the most safe and secure and not somewhere you feel trapped, house-bound and isolated.
Disability positive ……
Last week I wrote a “ranty” post about negative representation of MS and disability in the media, particularly BBC1’s EastEnders suicide storyline.
I was so cross about this I’d forgotten all about the deliciously diverse and inclusive new drama, “Years and years” written by Russell T Davies. Ironically, this was also on BBC1 and was the most positive portrayal of disability I’ve ever seen on TV.
budding communications 