Thank you to all the lovely people who have been in touch recently to check I’m ok. I must admit that the last few months have been hard and I’m mostly feeling quite relieved about delaying my trip to Russia for treatment. I think I am suffering from fundraising fatigue at the moment! …my team of helpers too. So I’m having a little bit of a break from it for now (although still selling things online) and hope to be back on track in a few week’s time.
As mentioned before, I am struggling a little with fatigue at the moment. This is a largely invisible symptom of MS, but experienced by many and is, in fact, the most common reason that pwMS find they have to give up work. I reduced my working hours to four days per week in January and apart from adjusting to the reduced income, I have found this to be a huge help.
Another symptom I am becoming more aware of is “brain fog”. Many MSers experience this and it’s something we all dread. Sometimes I struggle to find the word I am looking for and I’m aware of sometimes feeling, well, a bit foggy! I am very much aware that my ability to concentrate is not what it was. I have always been an avid reader but haven’t managed to read a book for a long time. This is partly because I’m busy and tired, but also because of poor concentration. I can’t tell you how much this saddens me – reading is everything – escapism, broadening the mind, gaining knowledge and understanding, sharing information, to name but a few. I so hope that my concentration returns once I’ve had HSCT, in fact, of all my symptoms, it’s the one that worries me the most.
A few years ago I gained a place on a Masters degree course at Manchester University. I very much believe in life long learning and think we are never to old to learn and achieve. I had to withdraw from the Masters course, as my MS took hold and know it would be beyond me now. Recently an opportunity to complete a post graduate qualification linked to the education of looked after children (children in care) arose at work – the old me would have jumped at this.
I’ve been trying to understand a little more about MS fatigue and brain fog and it seems that the cause of both is the efforts the brain is making to bypass areas of inflammation. We are blessed with brains that can adapt to small changes and work out new neural pathways in order to keep functioning. This uses a lot of energy and “brain power”, so the downside is brain fog and fatigue.
In my efforts to learn all I can about MS, I follow a number of fellow MSers and eminent neurologists online. In fact, I have learnt more by doing this than I have from my own neurologist and MS Nurse! One of those I follow is Dr Aaron Boster, Neuro-immunologist from Ohio, USA. Dr B (as many of his followers call him) believes that when someone has MS, their whole village has MS. The village is the family and friends of the person with the MS diagnosis. He believes that it is important for pwMS and other village members to learn about MS, as this can empower the MSer to “be the most awesome version of themselves they can possibly be”.
In one of his many MS education videos, Dr B describes a piece of research that involved asking people to perform a simple finger movement whilst their brains were scanned for activity.
For people without MS, one specific area of the brain lit up when the person moved their finger. When people with MS were scanned, it was found that several areas of their brains lit up when performing the same movement. This is thought to be due to the brain responding to areas of inflammation and damage, by “re-wiring” and using new areas of the brain in order to retain this functionality. If you imagine this happening multiple times, for all the complex movements and functions of the body, it is easy to see how hard the brain is working and to understand why fatigue and brain fog become an issue.
Two years ago, I didn’t have any visible disease activity in my brain, (on MRI) but my last three scans have shown new “white spots” (areas of disease activity) in my brain which have increased in size and number at each scan.
So, this why I need HSCT now! The disease activity in my brain is fairly new, so there is a greater chance of it being improved by HSCT. My hope is to stop the disease in its tracks and prevent further inflammation in my brain, let my neural pathways settle, stop feeling tired and foggy and start reading again! Maybe even manage some further study one day.
Here’s hoping!