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.
There can be many ‘invisible’ symptoms of Multiple Sclerosis (MS) and one that has plagued me since the beginning of my MS journey has been problems with vision. Optic neuritis can be a common early symptom of MS and is caused by inflammation of the optic nerve. It usually starts with pain in the eye (it can feel like there’s grit in it), then the vision decreases over several days, colours can appear altered and then you wait…
You hope that after a few weeks the vision will gradually return until you can see clearly again. However, like many MS relapse symptoms the function doesn’t always come back completely, but that’s ok because you can function with reduced vision in one eye…and it usually only affects one eye…except for when it doesn’t! I had repeated episodes of optic neuritis in the early years after my MS diagnosis. Back in those days it was treated with a 3 day course of IV steroids, but this only helped to resolve the bout more quickly and did not change the outcome, so I only had them on two occasions before deciding it wasn’t worth the side effects and the upheaval of daily visits to the hospital.
It is hard to describe the vision loss after optic nerve damage. I can see everything, but the finer detail won’t come into focus. I can see the person walking towards me, but I might struggle to see their face clearly, I can see the specials board in the café, but might have difficulty reading what soup of the day is, I can see the car, but can struggle to read the number plate and here lies the problem. For many years at my annual eye test the distance I could read down the chart has reduced. My glasses prescription would be increased and I would carry on, but optic nerve damage is often not correctable by stronger glasses. In fact what I’ve found recently is they appear to magnify the deficit as well as what I can see.
So the day I had been dreading arrived. I’ll be honest and confess that I had been putting it off, but I knew I needed an eye test and when I finally had one it confirmed my fears. Even with a significantly stronger prescription in my glasses I was struggling to read the line on the chart that I needed to be allowed to continue to drive. I could do it…just, but was advised to stop driving whilst I was referred to the ophthalmology department at the hospital to check there was nothing else going on. However, after a morning of in depth testing a few weeks later they confirmed it was optic nerve atrophy caused by the MS. So although I’m not aware of having any specific bouts of optic neuritis in the past 10+ years, the disease activity seems to have continued to damage those particular nerves.
I was advised to notify the DVLA and await further instruction. Eventually I was invited to make an appointment for an eye test at one of their assessment centres (Specsavers as it turns out!) A very nice lady explained what would happen and asked me to read as far down the chart as I could…but it was not enough. In fact it was significantly below what I could see 3 months before. She was very sympathetic and asked me to complete the visual field assessment too. (For those who haven’t had this test, you focus on a central spot and then press a button when you see the lights that flash in a random pattern around it.) She was somewhat bemused when I passed that with flying colours. In fact “perfect” she said. But my visual acuity (how clearly I could see) was letting me down. They suggested another eye test, just to check they couldn’t improve my vision by further change in prescription. Again I saw another lovely lady, but it became apparent that I just couldn’t read the line required (well I got 2 of the letters right, but that isn’t enough apparently!) Tears pricked my eyes as she carried out the rest of the checks as the enormity of what this meant started to sink in. I had been clinging onto my driving licence for as long as possible, but it was finally gone. It felt like the last bit of my independence was being taken away.
But that isn’t the reality. It’s just different. I have my mobility scooter, taxis and some very kind friends and family who give me lifts to help me get to where I need to be. I’m also having to learn to be a whole new level of organised, because I can’t just jump in the car and pop to the shop when I’ve forgotten something for tea or need to post a parcel or buy a birthday present. I’ve also realised that I need to make sure I don’t become isolated, because sometimes, especially when the weather has been bad, I haven’t left the house for days!
What has surprised me is that I’ve also felt an element of relief. I put immense pressure on myself to keep driving, because as a single mum I perceived it was necessary to continue doing the things I do, but actually now I’m not, nothing bad has happened! Life still goes on, albeit somewhat differently. My teenage son is enjoying discovering the freedom of the bus network and loving getting out and about on his new bike (that I helped him to buy as a guilt present to compensate for me not being able to drive him to places anymore!) Although I still find it difficult to ask for help I have some lovely friends who I’m actually getting to see more often as they are kindly offering to taking me to places.
Although the biggest impact of my vision problems is obviously the loss of my driving licence, it does affect everything. However, thanks to technology, fonts can be made bigger, I can ask Alexa and Siri for help and watching York City FC in soft focus is not always a bad thing! I’m still adjusting to not being able to drive, but there is much I can still do with a bit of careful planning and the help of others.
Here’s a link to my first HuffPost blog!
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.