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
- 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?
Crumbling is a good description.
Definitely. As a parent with MS, it’s horrendous. X
Regarding your comment on “self isolating” & “our superior experience in this matter” – It made me laugh & realise what good friends you have to “leave cake outside your door”.
My list is pretty similar to yours except I replace Netflix with Prime video, Twitter with just social media in general (Twitter, Facebook, LinkedIn), setting up your own business & doing everything online including videoconferences, webinars etc. and I would agree with your suggestion about learning something new, which is a very good way to fill lots of time!
I got booted off all DMD’s and only take anti-spasticity medication now, so no immune suppression in my case and I am very lucky that I don’t have any pulmonary issues. My biggest risk factor would come from the fact that my immune system seems to fight off everything too effectively in some cases i.e. MS – it even attacks itself!
Hear hear!!
And yes, my dear friend used to leave cake by my door.
As for social media, it’s been my godsend, through an incredible amount of difficult times. XX
I would reccomend Internet Relay Chat (IRC) for those like me for whom isolation and insomnia are a Trial. It’s initially hard to get into but worth persevering with as the internet never speaks and there is ALWAYS someone to talk to.
That’s a great idea Phillip, thank you! X
I’m really pleased with your post.
I FEEL VINDICATED!
Don’t get me started…Jonny
p.s. I’m looking at the MS Society’s website for their take on COVID-19.
I love your comment!! Stay safe. X
Self isolation is business as usual for me but I am feeling bad for everyone else because I know some are going to struggle with it. My immune system is not suppressed so I don’t have to worry about that either. My life is pretty simple and for that I am grateful, even with ms. I would feel lost without the internet though.
I totally agree – the internet is a lifeline at times like this.
My life is fairly small; I work with one person (usually) and go alone to work or with the boss. Fingers crossed I won’t get this. I had the flu once and it was horrendous so not sure how I’d cope with this one. X