Hannah Clayson. 26. Diagnosed with Relapsing Remitting Multiple Sclerosis February 2013.
Current treatment – Tysabri (Natalizumab)
Past treatment – Rebif
I am now in the limbo stage between Rapidly Evolving Severe Relapsing Remitting and Relapsing Secondary Progressive MS. Only time will tell. It’s all MS. Everyday I’m shuffling, regardless.
From this day onwards, everything made sense. My MS symptoms can be traced back to 2004, as far as my medical records go with MS. That is when I had what I now know to be my first relapse when I was 16. The classic dropped foot, for which I was sent to the neurologist for and it ‘cleared up’ after a few months. Nothing else was done. Mentioned. All good. I went about my life with the trials and tribulations of being a teenager. I have never been steady on my feet, balance and coordination were never my strong points. As far as wearing heels go, they have never been a part of my life. Pins and needles have been making a random appearance in the last couple of years, as well as the odd bouts of dizziness. I put all of this down to either a hangover, being clumsy, not getting enough sleep, a fear of falling when there were no handles to hold onto walking up/down the stairs etc. You know the story, blame it on everything else. It has never been troublesome for me, was just an ‘annoyance’ every now and then. Little did I know, the progression of these ‘weird’ things would all come to a head with a relapse 18 months ago, which was a lot more than an annoyance.
With the sudden onset and the dramatic life change which was thrown upon me I did enter denial, confusion, frustration and anger. Although with counselling, support groups, my amazing MS nurses and NHS staff, family and friends support, I have started to accept it. I am currently on Tysabri (monthly infusion) after Rebif (self injections) wasn’t keeping up with my progression.
With MS being a ‘silent disease’ for the most part with my mobility being the only real noticeable symptom, below is a list of the main hidden gems I deal with on a daily basis.
This would be the most noticeable and troublesome for me, I have spasticity in my legs and constant pins and needles which extends to poor balance and coordination. This is what I mean about losing the instructions when trying to walk, my brain just can’t process the information to my legs in regards to the coordination. Imagine you are drunk and trying your best to walk in a straight line on needles with sandbags tied to your legs, this is how it feels. However, this is one thing which has changed dramatically for me since starting Tysabri, whilst I still have pins and needles and no balance, my legs have found the instructions on how to walk (shuffle) for about 15 mins before drunk Hannah tackling that assault course of needles tied to sandbags comes out. Get me actually drunk with this going on and you are in for one hell of a show.
I have to plan my journeys, know how long I will be on my feet for and I only wear ankle boots/hi top trainers now (Dr.Martins, converse etc) as my foot slips out of dolly shoes. My feet need to be securely fastened in ready for take-off.
My visual symptoms are due to a lesion on the nerve pathway that control eye movements and visual coordination, and is something many people with MS experience at one time or another. Double Vision (Diplopia) is a symptom of mine which has stayed with me after a bout of Optic Neuritis in Dec ’12. When I first wake up, I can see perfectly, it’s when I start to move the double vision slowly creeps in, but when I rest my vision comes back. You will rarely see me in glasses on a lazy Sunday spent on the couch, for example. This is why you may see me taking my glasses on and off throughout the day, I have prism lenses to ‘trick’ the eyes to align the image onto one. Whilst this is extremely frustrating having my vision constantly changing throughout the day, it has become second nature to me. Glasses on. Glasses off. (Hannah son)
I have only been affected by this on my left side and with being left hand dominant, you can imagine the frustrations. My left hand side is numb in parts, as is my arm, I have constant tingling in my fingertips, but the left hand itself is pretty much paralysed with only a limited sensation in parts, and this is why I can still do some things with this hand. It has resulted me having to learn things right handed like writing (which I avoid like the plague), using cutlery etc, although if I grip the pen in a certain way/angle where there is sensation, I will be able to write you a birthday card, but it will look like a child has written it. It is only natural to reach out for objects with your dominant hand which results in me dropping things…a lot. I’m a lefty till’ death, I will persevere with it, well until I don’t have any more cutlery left the smash.
This started to come about for me a few years ago and is only since the relapse leading to my diagnosis has it affected my daily life. I can’t look up as the world will spin, as it does when I look left/right, especially when I need to cross the road. This is one of the things that ‘scares’ me about my MS as I don’t feel in control of it. Unless there are traffic lights, zebra crossing etc, where I can be sure the car comes to a stop, I do not feel comfortable crossing the road. I will take a long time to ensure that I cross the road safely as it is not just going dizzy, I have to move my head slowly to check for traffic to avoid the severity of the dizziness, it affects my balance and eyesight more and I can’t walk faster if a car comes along. Vertigo comes along when I go through a relapse, the room constantly spins resulting in me vomiting from it and I am prescribed ‘Serc’ (Betahistine) tablets which takes the edge off. This all has a knock on effect with my balance and vision resulting in me looking drunk if I was to walk and why a walking aid will still be used at times if I am just popping out. It really does depend on the day.
Along with crossing the road, this one of the frightening elements for me not having a grip on things which came easily for me before and I feel that I have gone ‘stupid’. I have really poor memory, whilst long term memory isn’t effected, short term – forget about it (excuse the pun). I have to make a note of EVERYTHING on my phone and/or post it notes, I find it difficult to recall memories and knowledge, it just isn’t retaining in this brain. I find it hard to find the words, we’ve all experienced this many times, ‘ohhh, it’s on the tip of my tongue!’, but this happens on a daily basis with me, more so when I go through a relapse. I have always been a chatty and sociable, but at times I tend to remain quiet during a group conversation because it is just taking me too long to recall the information I need, and by the time I do the topic has moved on. I get confused easily at times, along with decision making, the latest one is me taking over and hour to work out how to assemble a floor lamp WITH instructions. Now, I don’t experience all of these at the same time, but there will always be some sort of issue there on a daily basis. Like writing this for example, it took me all evening to just find the words to write the opening paragraph.
This is down to all those naps and probably the number one MS symptom for many. Now, this isn’t just I had a late night or a long day at work tired, MS fatigue is on a whole different level. My body just shuts.down. With keeping up with all of the above on a daily basis, I sleep well at night, that’s for sure. I hit exhaustion, I can wake up shattered after a full nights sleep, at work a few years ago I was in a little office and I used to fall asleep at my desk regularly (apologies if ex-boss lady is reading this. Confession time.), if I have the opportunity to nap I will take it, be it on the bus, just sitting down in a park etc – im there with eyes shut. My medication for this? I have found things in moderation and to take my time to be the best solution; I go to bed earlier, I get up earlier than I used too so I am not rushing around, its either/or with a lot of things now – I either go to see a friend in the evening OR I go do the food shop. Before all of this hit big time I would finish work, go to a gig, jump around like a lunatic and somehow be sat at work the next day, but I think getting older plays a part in not being able to do that now to be honest. I do however SIT like a civilised human being at concerts now as I can’t be on my feet for long – this was an experience when I saw Green Day and Bruce Springsteen last year, and SITTING on the floor when I went to Reading Festival. (changed women). I am trying to refrain from taking anymore medication at the moment and managing the fatigue the way I do seems to be working. Like with all of my MS symptoms, this is heightened when I go through a relapse.
With all of this going on, I still get up each morning, get dressed, do my hair, put my face on and take on the day…like i always have done. Nothing has changed there. I will fight this with a kick arse walking stick throwing my middle finger in the MonSters face. MS does not have me. I am still Hannah, just in a jelly form.