It dawned on me as I began writing this blog for World MS Day that I have had MS for most of my adult life. I know that might sound strange as I obviously knew I was diagnosed at the age of 22, soon after I left university, but it was the realisation that actually I haven’t experienced much adulting without managing a chronic condition too. You’d think I would’ve got the hang of it by now, wouldn’t you?!
For anyone unfamiliar with multiple sclerosis (MS) it is a neurological condition where the body’s immune system starts attacking the outer covering of the nerves (myelin) which causes the messages from the brain to different parts of the body to be disrupted (picture a phone charging cable with damaged casing so the wires are exposed in places.) This can affect pretty much any part of the body. It can cause things like numbness and pins and needles, muscle stiffness and pain, tremors and visual disturbance and overwhelming jet-lag like fatigue. MS can also affect memory and cognition as well as bladder and bowel function, balance and mobility. It can impact every part of how you think, feel and move. Also everyone is different and no two people with MS are the same. Their combination of symptoms and MS journey are unique to them.
There are different types of MS too. The most common type is relapsing-remitting (RRMS) with periods of new symptoms or previous ones flaring up followed by times of remission with less disease activity.
I have the secondary progressive type. This is often what RRMS becomes after 10-15 years. The flare-ups reduce, but the level of disability increases. Oh but you can still get relapses with secondary progressive, so my consultant informed me, which seems decidedly unfair!
It was during one of the flare ups recently that I experienced something affectionately known as the ‘MS Hug’ for the first time. Don’t let the name fool you, it is not nearly as soft and comforting as it sounds. Instead it is when the muscles in between the ribs go into spasm so that it feels like a tight band is around your chest. Like a too tight girdle or corset. It usually lasts for a few seconds or minutes at a time, but in my case it went on for days! Weeks in fact. It would slacken off for a time and then come in waves that would nearly take my breath away. That combined with the chest high numbness, pain and decreased sensation and strength in my hands it was not a fun time. For only the second time since I was diagnosed over 20 years ago, I couldn’t hold a pen properly to write. That is a very strange and frustrating situation. You take it for granted to be able to jot down a note, write a shopping list or sign your name and I was struggling to do any of that. I would put the pen in my hand, but I couldn’t make it move in the right way to form words on the page. It also made holding cutlery tricky and peeling vegetables nearly impossible! Thankfully all of these symptoms have now mostly improved, although not disappeared completely. You see that’s the other thing with MS, following a flare up or relapse you often don’t completely get back to how you were before. There is new normal to adjust to.
The theme for this years World MS Day is invisible symptoms. Most of the symptoms I’ve described you can’t see. You can see the stick I use to help me walk or the scooter I’m whizzing round the shops on, but you can’t see the rest which can be equally, if not more debilitating than what makes me need the mobility aids.
So if you see someone get out of a car parked in a disabled bay who ‘looks fine’ please don’t assume they are, if the person in front of you at the supermarket checkout is taking forever to get the money out to pay for their shopping please be patient and if someone doesn’t smile or wave back in the street please don’t assume they’re being rude. They maybe concentrating as hard as they can to function in a body that is not cooperating. Just because something isn’t visible to others, doesn’t mean it’s not there.
Sometimes I feel a bit like Goldilocks when it comes to finding the right temperature. I easily get too hot and I easily get too cold, in fact it can be rather tricky getting it just right!
It is well documented that heat can make MS symptoms worse. Usually only temporarily, but worse all the same. In fact in times gone by, before MRI scans and the like, the test for MS was to put the patient in a hot bath and see if the symptoms got worse. If they did you had MS and if not you’d didn’t. A bit like how they ‘identified’ witches! Except without the risk of drowning as hopefully they pulled people out if it made their symptoms too bad!
But a lesser known fact is the effect of the cold on MS symptoms. For some MSers that can be a real problem too. As the autumn starts to change into full on winter this is becoming rather difficult. I live in fear of snow and ice. It’s hard enough to walk with MS and a stick on level, dry ground, but to negotiate icy pavements or walk in the snow is a whole new level of challenge! And just generally trying to keep warm in winter is tricky. It’s ok if I’m at home with access to jumpers, thick socks and the central heating thermostat, but dressing to keep warm outside…especially watching football (either my son’s team or the mighty York City) is something I haven’t quite mastered yet. I’ve experimented with different types of thermals, socks, layers, gloves and hats, but to no avail. I’m seriously contemplating some heated gloves and I’ve seen a fabulous jacket with a rechargeable battery pack that powers heat in different sections…it’s a bit pricey though!
When I get cold it’s not just the usual unpleasant feeling of being cold, it actually makes my symptoms worse. My legs stiffen up, the tremors start, the pain gets worse and the fatigue hits me and because my internal thermostat is faulty due to the MS it takes a long time to get warm again. I usually dive under the duvet, fully clothed with a hot water bottle and wait for the thaw to set in…
I have recently found some hand and feet warmers (called Hothands) that are activated by the air once opened and last up to 10 hours. I tried them last weekend at a very cold football match and they helped a lot. I’ve just found that M&S do two different thicknesses of thermals too so I’ve ordered a thicker top to try. I’ve also bought some new thermal socks that have a Tog rating! Like duvets! Now surely they will do the trick!
So, I will continue to hunt for things to keep me warm, pray for another mild winter and look forward to warmer, but not too warm, summer days.
Check out my latest guest blog for MS-UK via the link below.
Check out my second guest blog for MS-UK at the link below.