Sleeping with the enemy
My 24 hour companion
When it comes to MS, disordered sleep is the only constant. It can be too much, too little, too disruptive and sometimes too intrusive. Sometimes it feels like I’m on the receiving end of physical and mental abuse from my own body.
Of course, that’s not to suggest that this is unique to MSers - just ask any insomniac. But after sleeping with multiple sclerosis for nearly 40 years, I can categorically say this: if living with MS was a marriage then I would have divorced it years ago.
But seeing as it’s not, and I can’t, then it looks like we’re destined to be bound together in a thankless, if not loveless, relationship.
How MS affects my sleepMany symptoms have made for uncomfortable bedfellows over the years. MS makes the nerve ends in my body react, shaking like I have Parkinson’s. I’ve had pulsating headaches to the back of my head so severe that I swore it was being repeatedly kicked.
And before medication I’d be experiencing numbness in my legs, and swallowing an excess of sticky saliva which made me feel I was drowning.
The morning after the night before always made me grouchy, unreasonable, selfish. But not, in my defence, without good reason. I would have been dragged out of bed by a restless bladder several times a night.
Having MS might not be as bad if, at least, I could sleep on it. But the excuse of not being a morning person doesn’t even begin to cover how I feel.
For better, for worse, together
So, what has MS done for me at night? Well, apart from all the aforementioned, what I’ve come to realise is that it’s less about me and more about my wife. Lizzy is also my carer who, after 28 years sleeping together, has shared every disturbed night I have had. And never once has it proved too much for her to cope with.
In this relationship, by being there to help me make it through the night, Lizzy inspires me to never give in, never give up and never complain. Because what goes on in the bedroom stays in the bedroom.
Martin is an MS blogger and influencer. You can read more of his blogs at martinbaum.co.uk.Looking for ways to manage your MS fatigue? Check out our online fatigue-management course.
Can you help us?
We urgently need your donation to support the MS community, campaign for essential change and keep MS research moving forward.
Help us be there for everyone with MS, no matter how the world changes.
Make a donation
Help us be there for everyone with MS
£10could pay for two phone conversations with a trained member of our new Keep In Touch team
£20could pay for our MS Helpline team to answer a call or message from someone who needs our help
£65could pay for someone with MS to have a session with our Benefits Adviser to help them get the support they need
Every penny you give us helps us be there for someone affected by MS.
£10a month could help cover the cost of a MS Helpline call with our specialist MS Nurse
£20a month could help people with MS get vital support from our Benefits Advisor
£30a month for a year could pay for a day on the MS Helpline, helping people in our MS community
Your regular donation means we can be there for everyone with MS. So no one has to face this pandemic alone.