Pandemics and Other MS Problems

You’ve all seen the news.

If you’re anything like me, you’ve been glued to it, waiting for specific advice for those of us who live with compromised immune systems.

And just like me, you’re probably disappointed.

Instead, thankfully, we have our own trusted sources to rely upon during this incredibly confusing time – MS Trust, MS Society and many others have been quick to keep us updated.

If you are finding it difficult to get out and buy food, please don’t panic. If you can, ask friends and family and if not, there has been an amazing lift in community measures to make sure no one is left behind – look into the NextDoor app and your local Facebook pages.

In the midst of all the terrible news, there are, at this moment, three good things to take away:

  • First, when this is over, and you ask your Boss if you can work from home, they’ll have a much harder time saying no. If we can mobilise half a nation to work from home within a week, why has this not happened before? After all, ‘reasonable adjustments’ are enshrined in law?
  • Second, self-isolation is second nature to most of us with MS and we have honed and perfected our techniques over the years since our diagnosis. Let’s share our lessons with others. I know it’s tempting to yell, ‘it’s not Christmas or a snow break!’ but be kind. They know no different. We can teach them.
  • The final point, although more intangible, may be that other people might realise just how difficult it is to be at home, day after day, week after week. We weren’t moaning unnecessarily after all!

Wow.

This is unprecedented – we have no rules to follow, but let’s be kind, look out for one another and stick together.

What is the alternative?

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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