Anyone with a decent understanding of relapses (episode – exacerbation -attack) knows that relapses often arrive with a vengeance. Despite negotiating with your body that you can’t spend all your time pandering to the beast, you also cannot BUT go through the motions of an MS relapse.
The nerve pain in my left leg lasted more than 48 hours and was worse than it had ever been. This was an episode I wanted to get rid as soon as possible. Added to that, I moved around with the speed of a blubbery seal on concrete while the rest of my usual symptoms continued unabated.
After two consecutive summers of COVID-19 restrictions, which left so many of us indoors, most physically fit people have now been back enjoying summer activities in the scorching heat. I took precautions after watching weather reports and bought a large parasol so I could at least spend some time in the garden.
However, what started with a few bouts of Uhthoff Syndrome – a worsening of neurological functions lasting less than 24 hours- my Uhthoff turned semi-professional just as Ireland was on the way to breaking its own temperature milestone. In an otherwise temperate climate, where summer days never break records, we suddenly found ourselves in 33.1° Celsius two weeks ago and 31° Celsius two days ago!
Living in a small bungalow with triple glazing and the sun beaming in from morning means that keeping the heat out has been very difficult. A mere 0.5° Celsius increase is enough to cause heat sensitivity like Uhthoff’s Phenomenon. Oh lord, please fix Global Warming today!
For the past three weeks or so the nerve pain in my left arm and leg is mind-boggling. I rarely cry during these days of physical pain. In fact, I've rarely cried since my diagnosis; I refuse to give in. However, the level of new neuropathic pain over the past few weeks caught me off-guard.
Right now, my brain is still as limp as my other extremities and brain fog only allows my cognitive skills to zoom in and out. These days it is more out than in. So, I reached out to friends on Facebook to ask how they tackle the increased temperatures.
Armed with their knowledge, I bought larger cooling mats and added two neck fans. Someone reminded me of cooling spray and sprays to ease pain (I used to use the latter when I was just diagnosed, but for some reason, I’d forgotten all about it). I added more door and window screens, allowing me to open them early in the morning to create drafts and lower the 30°C room temperatures while keeping spiders and other creatures out.
Continuing the fantastic advice friends gave me, I bought more cool towels & I’ve added all these to my arsenal of tower fans in the house. Under a new large parasol, even when the sun goes overboard I get most of my outdoor living in the back garden. Those Vitamin D bursts need to be had somehow!
I love how the warm, bright weather gives the country a new lease of life after having gone through the worst of times. One relapse won't kill me and this experience allows for more wisdom and ice cream! So go out, stay safe, and do spare a thought for those who don't always have the ability to enjoy it with you.
Further Information:
Read Joan Jordan's blog MS Relapse: A Brief History
Watch our Relapse Webinar with Dr Hugh Kearney
Read our information on relapses here
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