Yesterday on Facebook memories, this picture popped up and gave me a huge emotional jolt. It was taken in August 2016 on holiday on the Greek island of Santorini. It was a wonderful holiday … such a beautiful place, lovely fellow travellers and it was also the last time I felt truly “well”.
I’d had two MS relapses by this point and had fully recovered each time. At this time I was diagnosed as having had two episodes of Clinically Isolated Syndrome (CIS) and advised that a further episode was very unlikely. I’m not sure how two episodes can be defined as “isolated” and it doesn’t seem to fit with the information available online.
MS Trust: Clinically Isolated Syndrome (CIS)
At this time I was also at a point in my life when I finally felt things were going well in terms of my career and income. Back in 2002, I had become a single parent, following an unhappy marriage and very messy divorce. A few years later, I stepped back from teaching for less well paid jobs in order to have more time for my children (at this time I felt I had to be mother, father and grandparents to my kids, which didn’t fit well with working up to 60-70 hours each week as a teacher). This was the right decision for us and I have no regrets about doing it, but it left us rather short of money for quite some time.
By 2015, my children were both adults and well on their way to independence, so I’d gone back into teaching, working in a local authority team supporting the education of children in care. It was my dream job! My experience in the classroom and in child protection was put to good use, I was with a wonderful team of colleagues and I was back on a progressive career path.
My holiday in Santorini in August 2016 was one of the first proper holidays I had been on in years. I was feeling good, loving life and feeling confident about the future.
A few weeks after my holiday, I had my third major relapse and have never fully recovered. This led to further investigations, MRI scans, lumbar puncture and eventually a diagnosis of Multiple Sclerosis. I’ve had a continual increase in symptoms ever since, with new brain lesions identified at each MRI scan. My next scan is in September of this year … please send positive vibes, in the hope that there is nothing new found. I need this disease to stop and to leave me alone to live the best I can, where things are now.
In 2017, I was doing reasonably ok in terms of mobility and moved to my current home, which I expected to be my forever home, in the Summer of that year. At last my life was settled … perfect job, happy home, kids doing great and I was earning enough to afford the odd holiday.
Then it all came crashing down. Three years on, I now find work an increasing struggle and have had to reduce my hours and miss out on promotion. I live in constant fear of falling down my stairs and no longer even try to get things from the cellar. My house is going up for sale again soon and I’m heartbroken. But I need to live safely and try to find a way to manage, if I need to cut my hours further.
I’ve had counselling recently, which has helped me to see that I need to allow time for myself to grieve and mourn for all that I’ve lost, as I’ve mostly not allowed myself to do this. Then I need to accept things and move on. I’m a naturally positive and cheerful person, but in some situations this doesn’t help … I think my positive, ”just keep swimming” approach has got in the way of me being able to mentally process everything.
I’m still doing daily yoga (except on those exceptionally hot and humid days we’ve had recently) and finding this a huge help mentally and physically. My current mantra is …
I’ve managed to see a few friends recently, which has really lifted my spirits, but as the threat of a second wave of COVID 19 increases, I am starting to be more careful again and I don’t think it’ll be long before I’m back in lockdown, even if the government isn’t saying we should.
I hope you are all staying as safe and positive as you can, while all this is going on around us ❤️
