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MSS sleep blog feet in bed

Sleeping with the enemy

Martin Baum

My relationship with sleep, like any other relationship, is a complicated one.

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 sleep

Many 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.

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