The last seven days have been interesting, if nothing else.
Each day brought a flare-up of existing MS symptoms; one day blinding fatigue (hit by an anvil), the next Bambi legs.
Then there were the dodgy hands (hello smashed crockery), the stumbling, the teeth-gnashing nerve pain, the upside-down balance issues.
As I normally do when this happens, I retreat home, batten down the hatches and conduct life from my sofa and my bed. It’s taken years of practise and I think I now have it down to a fine art. Even the cat knows what’s expected from her. She has a chair opposite my bed (with a special blanket on it) and keeps a beady eye on me and also dominates the sofa opposite mine (much to The Teenager’s chagrin when he’s home).
MS is a boxing opponent who just won’t give up. They might leave the ring for a little while, to grab an energy drink or something, ready for the next bout, then they’re striding towards you once more, when you’ve barely made it back on your feet.
And the worst thing about this? Every single one of my symptoms are virtually invisible to all but the people closest to me. If I have to explain nerve pain and fatigue one more time, I’ll scream. And if someone says, ‘but you looks so well’, I’m half-tempted to say, ‘yeah, bit fat, got MS’ and see if they shuffle away.
MS is a very lonely illness. Of course, I live alone, but still. It shoves you into the deepest, darkest corners of real life. I had to cancel meeting a friend yesterday and I was devastated. I schlepped around the house, slept three times and listened to life going on outside my window.
So, I went to work today. I know I’m lucky, working with my best friend. He picks me up in the van, coffee ready in the cup-holder. He takes me shopping and on errands. At work, he made me take ‘cool breaks’. We had a laugh and it felt wonderful to be out and about, engaging in real life, despite my legs crawling with pain. For a short while, MS didn’t matter.
I get knocked down and I get back up again as the song goes and MS truly feels like that. Each day is shaped around MS and I could let it dominate or I can work with it to make it work for me. It’s amazing what you can get done from a sofa before nodding off to sleep yet again.
There may come a time when the balance tips, I know that. But until then, I’ll take the blows and get back up again.
You have just described my week. It really does help when it’s shared by someone who really understands. I am on the sofa until Friday and then I’ve got to get it together to go out with my family for my birthday meal. It will happen, I am determined to go out. My balance is all over the place and the fatigue is unrelenting but just like you I will battle on!
Thanks Helen – also good for me to hear that you guys go through the same thing. Don’t feel so alone!!
I hope you have a wonderful birthday. Take care!! X
I really feel for you, I’m in the middle of a relapse and have been off work for three months,it’s lonely, frustrating and horrible. You’re not on your own, we’ll carry on fighting and get through this. Take care x
Really sorry to hear this Vicky, sounds rotten. I love the online community we have here. It really has been a lifesaver for me! Thinking of you. X
You have described how I am everyday, I have primary progressive ms so no relapses, it goes on and on.
We have just got to Gatwick to go away I used my Walker to get from departures to premier (staying over night) and nearly fell(I thought the floor needed a hug).
I had to admit defeat and hubby had to get a wheelchair.
Oh how I hate……
But now chilled laying reading your post(with the good eye)
and getting into spirit( might come later)
flight 6am Spain by 9am
Mandy xx
Hi there! I hope you reached Spain with no major hassles? Thank you for your comment!
Today I thought I was doing really well, until I parked the car, stumbled down the pavement and tripped over, gah. Luckily two very kind people steadied me and sent me on my way. It never ends, lol! Have a wonderful holiday 🙂 X
What else can we do? Battling on is the only way to survive and survival is built in to all of us. It’s only those like us with debilitating conditions who MUST put it into practice.
You are absolutely right. I don’t think I’ve ever had such determination in my life and I’ve been through some battles, lol.
Onwards and upwards. X