Becky talks about the impact a recent diagnosis has had on her life, how it will affect her physical and mental health, and what she’s planning on doing to look after herself.
The sentence, “I can confirm we are working with a diagnosis of MS,” feels like a life sentence.
Being diagnosed with Multiple Sclerosis only a few short weeks ago has been emotionally challenging. Many questions have gone round and round my head – “Why me?”, “What am I going to do?”, “How am I going to cope?”, to name just a few. My life has changed immensely in a very short space of time. I struggle to walk, I shake, I drop things, my memory is poor, the fatigue is something else. I’ve gone from being relatively active to struggling to even get out of bed most days. I’ve gone from being able to walk miles to some days relying on a wheelchair to get out because I just can’t walk any distance. The sayings, “You don’t know what is round the corner,” and “Life can change in a flash,” are so so true.
There was a moment when I was laid in a hospital bed unable to move, unable to swallow, unable to talk. The only things I could do were to listen and understand. I’ve never felt fear like it. Forty-eight long hours of not knowing if I was ever going to be able to do anything again; crying my eyes out down the phone to my mum in fear. COVID-19 restrictions meant I couldn’t have visitors, feeling lonely and scared isn’t a good mix. Staff talking to me like rubbish, not taking me seriously, thinking it was all in my head. Comments like ,“What, you could do it yesterday,” alongside plain simple ignoring me not helping matters.
I knew it was MS. Within minutes of being sent to the JAMA unit that Wednesday afternoon and being told I was being kept in, one of my first comments was, “It’s MS, isn’t it?” Obviously at that time they didn’t know – they were thinking it was a stroke, but deep down I had a horrible feeling. My sister has it and the issues I’ve had with my eyes for the last few years – optic neuritis and optic atrophy – are precursors, a red flag for a potential MS diagnosis at some point
Fast forward five and a half weeks, after a ten day admission to hospital. Multiple blood tests, CT scans, MRIs, Lumbar Puncture, and here I am sat in a neurology consultant’s room. The whole appointment feeling like it’s in slow motion. The sentence, “I can confirm we are working with a diagnosis of MS,” feels like a life sentence. That instant I knew my life was going to be different forever and something else to have to deal with. I was expecting to be bombarded with appointments but instead there was nothing; I left the room with just the promise of referrals being completed. Like, mentally I wasn’t already struggling but now I was in the big wide world with a head about to explode with questions galore, and nowhere to turn.
When I say this I mean professionals in the medical field. I am fortunate to have friends and family to turn to but I don’t want to feel like a burden to them; after all, they have their own stuff to deal with. I can utilise the likes of Dial House, Connect and the Well-bean Café as well as my own CPN but as much as they can listen and empathise they don’t have the answers to the many questions going round my head. I’ve found myself really struggling mentally, depression and anxiety has kicked in and the thoughts of suicide have crossed my mind. I’m not ashamed to admit it but this isn’t going to change what is happening to me. Physical and mental health very often go hand in hand. There are services within hospital settings that are available, but you have to be referred in, and sometimes it is a long wait and not always possible. There are charities who offer support in specialist areas but quite often these are 9–5 and can’t help in those lonely hours outside those times.
There is of course the single point of access through the LYPFT mental health service but being told to distract yourself when you are struggling to even stay awake can feel invalidating and not very helpful. I guess they can’t help that either but it goes back to that sense of feeling alone.
I’ve started by changing what MS stands for.
This has led me to write this and to look at me and what I can do to help myself. This isn’t easy and maybe I can’t – or at least I can’t for some of the time. I’s not going to be an easy ride and I’m sure I will hit some bumps in the road and probably go round a few roundabouts. Mentally I’m drained and broken and, as much as I also feel this physically, maybe I can help look after myself with some changes, no matter how small, to make the road in front of me a little smoother. I’ve started by changing what MS stands for, from Multiple Sclerosis to Many Strengths and Magnificently Strong. It’s a small thing but it’s a start. Even if I can’t think of anything else for a few days it doesn’t matter.
It’s okay to not be okay and as another mental health awareness week has finished it doesn’t mean the conversation needs to stop. Mental health is just as important if not more important as physical health, especially how things are right now with the global pandemic it’s never been more Important. Please reach out and hold out a hand to others, if you’re able to. You never know what is around the corner for anyone