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My experience of primary progressive MS

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Ian Daly

Imagine shaving with four pairs of gloves on and you’ll have an idea

In light of today's news on ocrelizumab for primary progressive MS (PPMS), Ian Daly writes about the day to day reality of living with PPMS. 

I have PPMS. A typical day begins with me waking and taking stock of my various aches, pains, and odd sensations. It’s early and I’ve had around 8 hours sleep. Enough for most people but I’m still exhausted. I recently realised that my exhaustion has nothing to do with lack of sleep. I proved this by sleeping, on and off, for 24 hours during a weekend and having woken up exhausted, concluded that it’s just something I’m stuck with.

My hands are stinging due to peripheral neuritis, pain caused by nerve damage somewhere within my central nervous system, the internal plumbing of brain and spine that is responsible for virtually every physical movement and every thought that we have. I reach for my medication and make a mental note of the time. This ritual is repeated every 8 hours without fail. If I forget the various pains in random parts of my body will always remind me. More of this later.

Getting out of bed is undertaken with care as the stability of each leg needs to be verified before I put any weight on either limb. Having established a level of stability I unsteadily shuffle over to the bathroom where I carry out the usual evacuation of liquid. (Apologies for the level of detail here but it’s odd how your mind only focusses on things when they don’t function as expected). Twice. My MS nurse has taught me that, despite my body believing it has completed the expulsion of liquids, it actually hasn’t. Hang around for a bit after completing the process and sure enough, here comes wave two. There’s a bit of a communication issue between my brain and bladder. It could have been worse.

Next, a shave. The peripheral neuritis in my hands makes them numb so I test the heat of the water with the back of my arm. Splashing very hot water over your face is not a pleasant experience and I do speak from experience here. Applying shaving cream is unpleasant as the roughness of my stubble causes weird and unpleasant sensations in my hands and lower arms and shaving itself has to be undertaken with great care. Imagine shaving with four pairs of gloves on and you’ll have an idea. I also shave my head (for reasons I don’t fully understand!), a task I find best undertaken with my eyes closed, done from memory, and with a firm grasp on the handrail next to the sink. I believe it’s something to do with muscle memory as I had a similar experience recently when I forgot how to tie a tie. I just stood there like a lazy person being crucified, with the length of material in each hand and threaded under my collar and literally no idea what to do next. I shut my eyes and memory kicked in, thankfully.

As I stand whilst shaving, my legs ache constantly and feel incredibly weak. I constantly wobble or sway rather than remaining still. Randomly my legs jerk or the knees, particularly the left one for some reason, will buckle causing me to grab onto the handrail on the wall to stop me from falling over. The daily ritual of a shave takes me about 15 minutes and by the time I’m finished my arms feel like I’ve been to the gym to pump weights for two hours. You know the ache when you’ve used manual shears to cut a big hedge and you wake up the next morning with two limbs that look like arms but are just useless appendages? That. Every morning.

Thanks to my new high fibre diet my next bathroom task is completed without issue. Suffice to say that, prior to a meeting with an MS nurse and her invaluable advice, I was actually passing blood. All sorted now though. 

Shower next. I break down my bathroom tasks and a shower and getting dry is number four. Number four is the hardest. I can only step into the shower by using the hand rail to the side of the door, and then grabbing another handle inside the shower and hauling myself in. Turn the water on, after carefully checking the temperature, and off we go. My arms continue to ache and I note, not for the first time, that there are various parts of my body that I can’t feel the water hitting which is an odd sensation I have come to live with. If I shut my eyes, to avoid the water entering them, I fall over. The first time this happened I slipped due to confusion and banged my head on the shower wall. I now always grab the handrail and then shut my eyes.

Lie on your back, relax, and close your eyes. Do you know where your hands and feet are? Can you feel them? I’m guessing you can. That’s normal. I can’t. I have no idea where my extremities are and, during the night that can be quite alarming

After finishing the shower I turn the water off, open the screen door, grab a tight hold of the handrail to my left for support and step out. This straightforward procedure has caused me some concern for many months. I don’t know if it’s because I have reduced feeling in my feet and legs, or some wiring issues between my lower limbs and my brain but stepping out of the shower and down onto the bathroom floor, a drop of only six or seven inches, feels to me and my damaged central nervous system, like stepping off a building into a void. I’ve tried stepping out with my other leg, looking down at the floor, looking straight ahead, looking up, and shutting my eyes. Nothing helps. Every morning it’s like stepping off a cliff and wondering where the floor is. I know it’s there but there’s always a sense of relief when I finally get both feet onto the ground.

After a quick dry off, and partially dressing, I return to the bedroom. Sitting on the edge of the bed is a huge relief. I’ve been up for approximately 45 minutes and I’m utterly and totally exhausted.

Now I know how this sounds. I too used to look at people who complained that they were ‘tired’, ‘exhausted’, ‘weary’, and ‘couldn’t possibly move’ and I had no sympathy. I believe there are a lot of people who use being tired as an excuse for doing nothing on a regular basis.

Anyone with MS, however, is now excused from this.  Walk a mile in my shoes and all that (or hobble 10 yards in this instance). I flatter myself in that I am a reasonably strong and driven individual, or at least I used to be. I used to be able to work a 50 hour week and not bat an eyelid. I once ripped a door off a dishwasher because it broke down, dragged a washing machine through a house onto a drive to await collection, and demolished a nine panel fence with a lump hammer in around 10 minutes. I now struggle, some mornings, to lift a razor and my stamina is none existent. I honestly believe a person of less physical strength would now be a lot less mobile than I am. I find this immensely frustrating particularly as, admittedly when I’m not walking with my stick or standing and wobbling around like one of those toys with a weight in the bottom, I look exactly the same as I did before I got ill.

I’ve done a little research on MS fatigue and it seems nobody really knows what causes it. It is not however exhaustion or feeling tired.

But I digress. Where were we? Oh yes. Sitting, partially dressed on the edge of the bed trying to summon up enough energy to put my jeans and a T shirt on. I used to be able to stand whilst dressing. Those days are gone and have been replaced by day to day operations that I have designed to reduce my expenditure of energy. I sit down whilst dressing. I move my right leg with my hands as it refuses to do what I ask of it. The left leg is slightly more obliging but I sense it is slowly coming out in support of its companion.

My MS causes me pain with each step that I take. Stairs are particularly problematic as, by their very nature, your entire body weight is placed upon each leg in turn. 

Once dressed its downstairs for more coffee and something to eat. Incidentally coffee is a bladder irritant and not recommended, in excess, for suffers of MS. I, however, rely on it heavily to remain awake and therefore accept my fate. Do your worst.

Descending stairs used to be a slightly scary and painful experience. My MS causes me pain with each step that I take. Stairs are particularly problematic as, by their very nature, your entire body weight is placed upon each leg in turn. I am fortunate in that my stairs at home have hand rails and banisters on either side. Ascending and descending them was thus carried out by me emulating an orangutan, holding onto banisters and rails and attempting to prevent my full body weight from being placed on either leg. Most of my recent falls have involved stairs. They (the falls) are something I don’t wish to repeat. Having reached the bottom of the 13 obstacles my house builder put in my way I’d usually remain downstairs until it was time to make the accent to bed. Remember day to day operations that I have designed to reduce my expenditure of energy? Stairs were a killer and so best avoided. I am now fortunate in that we recently had a stair lift fitted. I can now ascend and descend with ease… whilst contemplating what my life has become, and with elevator music playing in my head.

So I’m up and dressed and wondering what this disease of mine has in store for me today? My medication tends to take the edge off things. By that I mean that it tends to reduce my symptoms for around five hours. After taking there’s a period of waiting for the effects to kick in, and I also notice as they begin to wear of. It adds a certain frisson to the day.

I’ll give you a tour of my symptoms if you like. Whilst typing this I’m using a laptop. The keys are slightly too close and I keep needing to go back to correct my errors of which there are many. This is exacerbated by the fact I have minimal feeling in my hands generally and specifically the finger tips. My left hand is intent on repeated spasms in fingers four and five which I’ve now clenched like a fist.

My feet are constantly numb and, as previously mentioned, there’s something not quite right with their connection to my brain. This also applies to my hands. Lie on your back, relax, and close your eyes. Do you know where your hands and feet are? Can you feel them? I’m guessing you can. That’s normal. I can’t. I have no idea where my extremities are and, during the night that can be quite alarming. Also quite alarming is being woken by your leg, having spasms and jumping around the bed. It stops after 30 seconds or so but having your sleep disturbed by your leg is never good. Rightly and lefty have both had successful attempts at waking me. I have also been woken by my index finger tapping on my head. In my sleepy state I thought we had a leaking roof and it was dripping onto me but no. I moved my left hand and it stopped. Upon examination my left index finger was in spasm. It looked like I was sending a very long and detailed Morse code message.

My feet and shins burn. It feels like I’m standing, up to my knees, in very hot water. A burning sensation is apparently really common with MS and I have experienced a variety of its manifestations. Further examples are a hot stabbing pain on the soles of my feet akin to someone with a soldering iron, white hot, prodding them. This usually happens at night as I’m attempting to get to sleep and my muscles are relaxing. Sunburn sensations are also common. My shoulders, upper arms, scalp, and calves seem especially susceptible to this. Unlike ‘normal’ pain, cream or ordinary pain medication has no effect whatsoever.

I’ve had feelings of water, hot or cold, on my upper legs. This mainly seems to affect the rear of my calves. I’ve also experienced this on my rear whilst driving and imagined the worst.

Aches and pains seem infinitely variable. From deep agonising pains in my arms and legs to a tight gripping of my chest making breathing difficult I seem to have experienced most things. One of the most disconcerting is a sensation of crawling insects on your skin. My scalp (hairless thankfully so I can see there’s nothing there), my forearms, and my thighs seem most affected. I find sharply smacking the affected area provides some relief, something to do with giving your brain another sensation to deal with, but it does tend to draw attention if you’re on the bus.