Self-Isolation? Just Ask An MSer

Pre-MS, I could never imagine a day I did not scoop up my kid and take him out.

The very idea of being stuck at home was absolute anathema. I collected cut-outs from newspapers, leaflets and magazines with a zealous streak, not wanting him to miss out on anything.

Post-MS, it was a very different scenario; devoted rugby mums would collect him and bring him back brimming with mud, injuries and victories. My friend attended parents evenings and took copious notes on my behalf, which she then relayed to back to me.

Those were dark days.

When you can’t take your Teenager to the beach as you know you’ll be weak and miserable, with a massive dollop of heat intolerance is distressing beyond belief.

I waved him off, a smile on my face, but inside I was crumbling.

Eight years down the line since my diagnosis, and three courses of Alemtuzumab later, I am in an ok-ish place.

And now we have this virus, which we may, as people with MS, be a little more susceptible to. I say this gently, as we are not yet aware of the whole picture. What I do know is that to have an MRI, which I do yearly, may show more lesions, and this could be the year for another course of Alemtuzumab.

If this is the case, I cannot see it happening for me, as it would reduce my immunity to near zero. And that is ok. I’m still working, still studying, I’ll get through this blip.

But the one thing us MSers are brilliant at is self-isolating, after all, most of us have been doing it for years.

So, let’s turn the tables and give others the benefit of our experience?

  • Home shopping
  • Friends leave cake outside your door
  • Twitter
  • Netflix
  • Stay in touch, whatever way you can
  • Learn something new

I’m actually amazed that our Government hasn’t yet called upon our superior experience in this matter, but we live and learn?

Just Be … Kind

We all know life is short, but sometimes it takes a famous person’s suicide to bring this home.

I have been lucky, just one troll in all these years, and they were swiftly dealt with.

To die at 40 is horrendous. There are no words for her family.

And her family is all that matters at this point – not the usual suspects popping up to give their opinion on daytime telly.

Bit late?

Why am I saying this?

Anyone who is in the public eye, who voices an opinion, is culpable. I don’t want to hear about her last Instagram, her last photo. Her last meal.

She died alone, as all suicides do, without their family and friends.

It breaks my heart that someone so full of life could feel there was no other option, when all around them, they were surrounded by love.

We’re not here for long; if you know someone who is struggling, reach out, if you can.

They are not manipulative, seeking attention or playing games. Suicide is real, for far too many people , who are left forever wondering WHY.

Life And Other Messy Things

It’s been a dreadful five months, but we need to begin to look forward.

Grief has overwhelmed me, MS has hitched a ride on the back of it and shaken me to the core and as a small family, we have to gather ourselves together and celebrate life in all it’s glory.

No one is ever forgotten, they are carried with us throughout life – my dad, who died in 1978, my brother more recently and many others in between.

The best way to honour their memory and legacy is to aspire to be the very best within our capabilities and more importantly, to do no harm.

All shocks have repercussions, good and bad; MS forced me and The Teenager to create a whole new life – new job, new mum, new identity. We got through it, wobbles along the way, but we did it. I’m happy to say that he is thriving at University and I am beyond proud of all he has achieved.

Grief, seismic shifts and time passing creates a re-evaluation – someone came back in to my life after a long absence. There is never a good time to meet anyone and people always told me it would be at the worst possible time. They were right, but it worked.

It’s not serious – they would be the first to say that – but it works, just now, for us.

I have nothing to ‘admit to’, or ‘come clean about’. It just is. I just love this person.

When you attend your sibling’s funeral, decades before you really should, life shifts and reorganises itself. What seemed important is less so, and vice versa.

Life is a continual series of lessons, the most important of which is, you never know what someone else is going through. Be kind to each other, be aware that someone so happy and vibrant is just as likely to be as depressed as the person who ‘looks depressed’.

I’ve confirmed on Twitter these last few weeks and months that I have never found it to be anything less than supportive. Perhaps I’m lucky, but having seen me through MS, The Teenager, Grief and beyond, I do think it can be a force for good.

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Overcoming Obstacles

Shockingly, I haven’t had a bath for over nine years.

Where once I liked nothing more than wallowing in boiling hot, heavily-scented water with a good book to hand, MS heat intolerance has rendered this a sepia-tinted memory.

The only problem is, my shower is over this bath, a pre-MS relic. It is also very curved, very high to step in to and completely impractical. My feet are never quite flat in the bath, I’ve fallen out a good few times, once cracking my head on the toilet (very unglam) and now I live alone, taking a shower each day is a persistent worry. Despite my friend installing a couple of grab rails, it’s an obstacle course.

I am my own worst enemy, in that I rarely ask for help. Instead, I muddle along, accommodating way beyond what is reasonable. Desperation drove me to apply for a Council Disabled Facilities Grant and I didn’t hold out much hope. The plan was to take the bath out and replace with a large walk-in shower, something my paltry income would never extend to.

A wonderful Occupational Therapist visited me at home, chatted through everything with me, had a good look at the offending bath and agreed we had A Problem. The relief was intense. She filled in forms for me, contacted my MS nurse and asked the Council to visit me for a Financial Review. This took place last week and I had every single piece of paperwork to hand, with the upshot being that I am poor enough to qualify for help.

I cannot describe the utter relief that something I am increasingly finding so difficult will now be made so easy. I think all of us constantly scan obstacles and work out how to make them easier – I took my kitchen door off its hinges when I walked into it too many times. I have a cordless vacuum after tripping over the cord far too often. I ignore dust, batch-cook when I have energy and live off re-heated meals when I don’t. I don’t work when I can’t and I do when I can. It’s all about being flexible.

I wish I had asked for help much sooner, but pride got in the way. Now, I can’t wait to not worry about having a shower. It sounds so simple?

If I have any advice, it would be, don’t wait until you put your health in danger as I did, ask. You may be knocked back but just keep asking.

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Stepping Into The Future

Grief has overwhelmed me since last year.

I am nowhere near over this but I know I have to take small steps to a different kind of life.

I have been poleaxed, hermit-like at home, bar a few special occasions. This has to change. I know now that I will always be carrying this grief; it may alter slightly but the ramifications of it never will.

Losing a sibling through grief changes you irrevocably and I can see that I will never be the person I was before. But I have to start looking after myself and my little family alongside treasuring precious memories.

I have been spiralling into somewhere I do not want to go. With a huge debt to my friends, I am starting to engage with the wider world once more and I want to stay here. At the turn of the year and decade, I am determined to bring some semblance of joy back into my life, and my son’s. He is the one who made me think; he came back for the University Christmas break in early December and his infectious zest and energy lifted me and our little cottage out of the fog.

I realised the other day that I have been blogging about life with MS since 2012 (The Teenager was 13, he’s 21 this year!), and you guys have seen me through ill-health, exams, the good times, the bad times and now the awful times. I feel immensely privileged to have this platform. You’ve been everywhere with me.

It’s too easy to feel we are alone when we are most vulnerable. I know, I felt that way. You, along with my close friends, have pulled me through yet again and I am beyond grateful.

I am trying to embed positive habits in 2020. I have started a journal-writing course with Mab Jones, which is an excellent way to reflect. I am changing one small thing every day to shake up my routine, something I first heard about through RD Laing’s literature – although there is a whole lot I don’t agree with him about. I am awake early every morning so I build in some PhD study time before starting work.

Very, very small steps. I will never, ever forget my brother. How could I? Yet, if I can incorporate some of his beautiful personality into our lives, surely this is a step in the right direction?