Blog Extra - MS Awareness Week 22nd April to 28th April 2024
This week is UK MS Awareness Week and this year Overcoming MS is running a campaign called #MSUnfiltered.
As part of the campaign, OMS is working with MS Society UK, MS Together, Multiple Sclerosis Trust, MS-UK, Neuro Therapy Network and Shift.ms to survey over 1,400 people in the UK living with MS. The survey results showed us that:
When I was diagnosed the first thing I did was to check out the MS charity websites, as recommended by my neurologist. When I read the long list of symptoms
I was appalled because I had virtually all of these symptoms to some degree or another.
Here is the list of symptoms combined from the MS Trust and the MS Society websites:
Fatigue
Strange Skin sensations (numbness tingling, pins and needles, a crawling)
Balance and Co-ordination
Vision Problems
Walking difficulties
Thinking & memory difficulties (brain fog)
Bladder & bowel issues
Temperature sensitivity
Low mood, emotional problems, depression, and anxiety
Pain
Sexual issues
Sleep problems
Speech and swallowing problems
Hearing difficulties
Tremors
So when I read the list not only was I dismayed, I was also rather confused. Because, some of those symptoms I had been putting down to my age. So how do I know is it my MS or an age thing?
But I’m really hear to talk about the #MSUnfiltered campaign and what we don’t usually talk about.
While I have been very open about my MS diagnosis, there are some people who chose not to tell their employer for fear of being judged and side-lined at work. And when I chose to give up work, I didn’t tell my clients the full reasons behind my decision. Which were, that I no longer trusted myself to build an accurate spreadsheet of financial projections or that it took me three times longer that it should to write a simple report due to my brain fog and reduction in manual dexterity at the keyboard. The reduction in my ability to hold complex ideas in my mind undermined my confidence in my own abilities. I wanted them to remember me as someone capable of doing everything that I used.
Sometimes I get so overwhelmed by outside stimulus that I struggle to think straight or to express myself properly. All I can manage is a grunt because I can’t get the words that I want to say out. I come over as inarticulate and I worry people will think I am rude because I only use a few words and need to go and lie down.
Up to 50% of people with MS have poor mental health – this is something I am comfortable talking about and I am happy to fly the flag here. However, when I went on an MS retreat in November and started to talk about how MS affects my mental health, not one person had the courage to talk about their own issues. Even though there were 40 people in the room, and we were in a ‘safe space’. If the stats are right at least 20 people in that room must have experience of poor mental health. For a moment, I felt a bit embarrassed for raising the topic, but only for a moment. What I really felt was sympathy that no one else had the courage to share.
And finally, my closest friends will know that I use the loo A LOT. I now have a RADAR key but I haven't had to use it YET.
#MSAwarenessWeek #MSAwareness #MS #MSDiagnosis #OvercomingMS #OMS #MSSymptoms
