Reaching for the positive

Steph, 46, from London has faced many hurdles in her MS journey, but in her darkest moments, she has found hope and support through the MS Trust. This is her story. 

Hello, I sit here (on the sofa working full time from home during the Covid-19 epidemic) with a burning lower back and numb legs, exhausted and depressed, thinking when is anything ever going to get better?

I wanted to write this because sometimes, staying positive is hard. There are real times too, reflective times, down times where reaching for that positivity is impossible. This is where the MS Trust helps, offering different types of support that you can tap into, factual, practical, emotional and wellbeing. Without judgement - knowing that sometimes it is hard to be positive.

Diagnosed at 39 in the middle of my IVF journey. I had spent the preceding 15 years dealing with BIH (or Idiopathic Intracranial Hypertension or 'False Brain Tumour') and now here I was in the throes of an IVF battle, with the symptoms of a stroke and thinking “What now?”.

It took two months for a diagnosis, pretty quick. My 23rd lumbar puncture seemed to clinch it. Yes, I was used to lumbar punctures as a therapeutic treatment for BIH. But this one was undertaken to the sound of the national anthem on the ward TV screen which seemed to give it that sense of occasion. 

MS. 
Right. 

Diagnosis received the day before my 20-year-old niece’s funeral, dying after a long battle with Cystic Fibrosis. Straight onto high dose steroids for the accompanying optic neuritis then in a car up to a funeral and to what would be the start of the saddest week of my life. 

Do you ever get to grips with a diagnosis of MS? 
Not sure. 

Going to look this straight in the eye. Off to my local MS meetings I go, confronted with a man in a wheelchair being fed through a tube and the whole range of MS stages. I persevered. But, too much, too soon and I stopped.

First thing my boss said to me “Awful that you will be in a wheelchair soon, how are you coping?” Um. Thanks. My first question, what about my IVF journey, has that gone too? “If you are prepared to wait for MS medication, we are happy for you to have one last go at IVF (fourth try).” I was. And, my son was born. Yeah!

Eighteen months later, I was ready to go onto disease modifying drugs. Tecfidera. I’d had enough of needles with lumbar punctures and IVF!

Oh lord, Mum dies suddenly.
DMDs delayed for a few weeks.

First month on Tecfidera. Losing bowel control on buses (just as well I had a child in a nappy to publicly chastise). Was going to give up but after a month things settled with just the glowing red blush.

Almost five years later. 

I am fatter. I am sadder all the time. I am exhausted. My legs are always numb. I’m angry. I’m horrible to be around (most of the time). 

But, the thing that haunts me. The thing that has changed me forever. I’m never going to get better, what is the point of losing weight, being happy, trying to get fit. It doesn’t matter. Nothing can ever get better.

So, here’s my struggle. 

Sometimes I can feel me wanting to reach for the positive. I may not end up in a wheelchair, my son may not have to be my carer, I know it’s not all over and things might change. The MS Trust helps me keep that wanting to reach. Thanks for your forum, thanks for your website, thanks for being there.