Lying awake last night, I was pondering what to write for this post. By Wednesday evening, I’ve usually started planning and finding images, but this week has been a very full one (in a good way). What, if anything, could I bring to you? What has been on my mind?
Unfortunately, the answer came rather quickly: pain.
One of the reasons that I was lying awake was because my legs felt like they were being covered in boiling oil.
Fortunately, an hour or so before, I had taken some very strong CBD oil, which, in combination with my other medication, would eventually calm things down. Without either of them, I would be beside myself.
Catch -22
Ironically, the best thing for me to do to reduce these MS symptoms is to exercise. This is seldom painless, but it is the only way that I can ensure mobility. Sadly, it often leads to further discomfort later on, but lack of exercise would only lead to greater spasticity. I can’t win!
And though my legs experience the worst of it; at night especially, other parts of my body hurt or ‘go to sleep’, have violent pins and needles or spasms. Occasionally, I suffer the wonderfully misnamed MS hug, which rather resembles being caught in the ring with a heavyweight boxer. Sometimes, folks mistake it for a heart attack.
Pain is invisible
Like so many of the symptoms of MS, this one is invisible. But no-one wants their discomfort to show on their face, so they smile and brush it off. Self-pity is taboo. No-one likes a moaner. Indeed, writing this post, I am acutely aware that some might read it as just that: a ‘feel sorry for me’ piece, but it is not. Read on and you’ll see why.
While chronic pain is itself physically disabling, it keeps close company with depression. Knowing that one will never get better and in fact only get worse, is hardly a formula for optimism. But I have found that when we acknowledge and indeed embrace our reality, suffering can be transmuted into something else.
Pain as transformative
When I was younger, I was constantly puzzled by the position taken by a number of religious leaders that pain could be a good thing. How could it be a good thing? No doubt, I thought, such messages were given by those who didn’t endure pain or loss at all.
Yet, with all that has happened, I’ve come to realise that they are right. Mental and physical pain takes us out of the general swirl of life and lands us on a little island where we need to take stock and decide whether our circumstances will destroy or make us.
The most brilliant, compassionate and eloquent writer on such matters is the musician, Nick Cave. In his weekly post in The Red Hand Files (https://www.theredhandfiles.com/) he tackles readers’ heart-wrenching situations and finds a way to transform them. He has taken his own suffering as a prompt to help others with theirs and in doing so found a deep and meaningful calling.
Though in nowhere near the same league as Nick Cave, I too have found that suffering can bring an entirely new perspective on life. Though I could certainly do without the pain and the restrictions that disability brings, I am more calm, more cheerful and more accepting than ever.
The purpose of this blog was to show that no matter what life throws at you, there is good to be found. We need not be crushed by circumstance. I also wanted to draw attention to the unspoken world of the disabled and give it voice.
For disability and pain stick together like jam on toast. And so I’ll finish with a request that when you meet or interact with someone with disabilities that you remember that there is so much more that they are dealing with than meets the eye. Just getting out has shown great courage.
So many disparage the disabled, perhaps through ignorance or fear of prejudice, but I hope that you can greet them with compassion, understanding and friendship. We are not so different, you and I. *
- My last comments were prompted by a distressing (to me) article in Country Living where a beautiful young woman found herself paralysed after a catastrophic illness. She writes, ‘As a disabled person, I don’t feel I belong in many places, but in the countryside, I feel free- until I experience a stranger’s question or stare.’ (Country Living, March 2024) In an age where we show acceptance of so much, perhaps it’s time we included the disabled in that too.
Your pains and discomfort do sound horrible, Karen. Very thoughtful blog. Thank you.
They are a bit rubbish – but cheery friends help me through! xx
I’m so sorry your symptoms are so awfully debilitating at the moment Karen … but I know they are always with you in some form. An indefinite diagnosis can cause depression, and then depression will cause heightened pain! 😞 However you have worked so hard not to let yourself get ‘down’, and what you achieve and get out of life is truly remarkable. It would make anyone without the challenge of pain look idle! Again, great blog – still look forward to them every Saturday x
Thank you Lys – keeping busy is a great distraction and it’s lovely to have people who understand. It makes it infinitely easier to cope.
Hope you are doing well x
Brilliant article Karen. Such true words. It occurred to me that you should possibly share these on LinkedIn as posts. Hastag them as mental heath, multiple sclerosis, disability awareness, and so many people will read and benefit from your clever words. Obviously you may not want to share all of the posts, if they are family orientated etc, but ones like these are so valuable to a wider community. Just a thought! 🥰
Thank you Sally. I hadn’t thought of that. I may need a Millennial to help me! xxx
Just make a profile. Then click the plus sign, and copy and paste your recent blog!
https://www.linkedin.com/mwlite/feed/
Thank you Sally – you are a star!! I’ll try tomorrow! x
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