Multiple Sclerosis features a series of problems, many of which doctors, nurses, specialists, therapists, can help us to solve. If my leg strength is weak then my physio will help me to strengthen it. If I’m in pain then doctors can prescribe medications. If the MS threatens me with an attack then my MS nurses will attend and ensure that if this is a relapse we get the help we need.
But some of the challenges of MS cannot be managed by doctors.
If I’m in chronic nerve pain and the prescribed medications don’t work because it is a form of nerve pain, and there are only a handful of medications that are designed to work on that kind of pain, and they sometimes don’t, then the problem isn’t one that anyone else can easily solve. Instead, it becomes a problem I experience that I need to find a way to fix to some extent.
If I have severe insomnia and the available drugs are addictive and cannot be prescribed for long, then the problem becomes one doctors can’t easily solve. They can’t force my system to sleep, they’re not inside my system. And if I want to get back to sleepytown then I’m the one who is going to have to work out which bus to catch.
If I need to exercise but can only walk for 12 minutes at a time then I could shrug my shoulders in resignation to the fates. But the only person who suffers if I don’t find a way to exercise is me. It is possible that exercise is impossible, but I’m going to assume there is a way to do this until the Universe proves to me I’m wrong.
If I want to stand to teach but my bladder protests by throwing all its toys out the pram, and by toys I mean urine, and by pram I mean me… then we have a problem that needs solving.
In all honesty, MS is mostly a series of problems that I need to solve.
We can try to distract ourselves from some problems, ignore them as best we can. Tinnitus is a great example of this. Tinnitus can be one of those rarer consequences of MS, amazingly. I have found some ways to reduce it, sleeping on the other side so that earwax doesn’t build up against the drum while I’m sleeping, but my primary approach is distraction. I listen to music, listen to an audiobook, pull my attention somewhere else, and the static it represents can disappear more into the background.
But some problems have too much of an impact to ignore. If the tree outside creaks loudly that’s a bit of an annoyance, but if it kept breaking into my flat and stealing all my pasta then that’s a problem we need to solve.
Luckily I’m an Educational Psychologist, and we are trained in complex problem solving.
Complex problem solving searches for an explanation for the problem, the mechanical reason that something we don’t want to happen is happening, or that something we do want to happen isn’t, to the extent that a solution presents itself. The fundamental rule of complex problem solving is that if a solution hasn’t become obvious then we haven’t yet understood the problem well enough.
I read a lot, and often I’ll try to understand a problem in terms of the neurology that’s faltering in some esoteric and specific way. Let’s take nerve pain as an example. I read everything I could find to understand how nerve pain happens. I find that demyelinated nerves losing their myelin insulation develop sodium channels along the length of the axon (the long tube line through which the signal gets sent), the upshot of which is that the nerve’s polarisation can get… wacky. In short, signals can begin in the middle of the axon and are sent simultaneously up the axon toward the brain, and down the axon toward the body. The downward signal causes spasticity, spasms, the upward signal is sometimes interpreted as pain.
These sodium channels open and close inefficiently in warmer body temperatures, of only 0.2-0.5 degrees centigrade higher than normal, increasing the chance of spontaneous signal misfiring.
Our solution is simple: stay cool.
When I was in the worst of the nerve pain I created a plan to manage it, especially at night, where the warmth of snuggling in bed would trigger the pain to wake me. So we’d keep the bedroom cool and when it woke me, we’d get up immediately. Then we’d do complex problem solving. I’d sit on the couch and time how long it took for the worst pain to abate. I’d then try different techniques to improve that time, anything that might cool me down physically, distract me, fix my posture in the moment to ease any pressure on the spinal nerves. I tried a bunch of different things, and if the new technique increased the time it took for the pain to abate, or failed to reduce it, then I’d throw that technique on the garbage pile and try the next one.
Gradually I’d find a series of steps I could take, each of which alone would have a small impact on the problem, but which together would change things more noticeably.
It worked.
I found that if I got cool, sat upright, watched something distracting, I could get the duration of the most severe pain down to 27 minutes.
Let’s take a simpler example. Insomnia is a true nightmare. When I couldn’t initiate sleep, likely because MS attacked my brainstem, I started to get anxious about going to bed, anticipating a difficult time. I was also staying in bed for a long time awake, and only getting tired at about 7am. My reading yielded an understanding that sleep problems could be exacerbated by a dissociation of the bedroom and bed from sleep. If your body gets familiar with bed as a place to think rather than sleep, the brain can get active when you hit the mattress, rather than get ready for sleep.
I started melatonin to get my tiredness at the time I needed it, and I enacted a plan that got me out of bed rapidly if I started to struggle to sleep, got me in a different locale reading until I felt tired, and then I’d try to sleep again. My aim wasn’t to spend more time asleep, but rather to spend a greater proportion of the time I was in bed asleep.
I read that anxiety was also a challenge for sleep, and getting anxious about going to bed could create its own problems. But I read that anxiety didn’t work like pain. Distracting yourself from pain is a good thing, distracting yourself from anxiety is not. Anxiety isn’t something you can ignore, and ignoring it only made me more anxious, as though a frightened part of me knew I wasn’t listening and started shouting.
So I started listening, and stopped actively fearing being anxious, having faith that the anxiety would reduce because I had fully experienced it.
Again, I tested each strategy over time and reviewed how it affected the problem. If it made it a little better, even just by a smidge, then it became a part of the new plan; if it made it worse or did nothing at all, then off to the ever growing pile of failed techniques it went.
It worked.
I developed a sleep management plan. If I struggled to sleep for more than 30 minutes I’d get out of bed, go to another room, lie under a blanket, listen to a podcast or storm sounds, and then wait until I started to get tired. Only then would I return to bed to start the cycle again.
It took two years to get things fully under control but now my sleep is fairly robust. I only have a bad night every 2-3 months or so.
Exercise, then! I was running regularly when I found my legs started to fail. So I got to work, started testing different strategies, seeing what their limit was and finding ways to push that limit further. When it came to the legs, nothing I did worked. Remaining cold supported the leg strength considerably, but a 10-minute walk increased the body temperature and nothing I did permitted me to exceed that hard 12-minute leg strength limit. So I got myself a very old exercise bike and started riding in my bedroom daily. You don’t need to walk if you’re sat down cycling, I thought! I got a VR headset and rode around Northern Ireland, through music videos, doing races with digital adversaries. It was great fun! Afterwards, though, my legs were essentially piles of leaves and trying to stand on them I found they really just were just a soft landing pad for an inevitable impact with the ground.
But as I thought about it I realised that walking wasn’t the problem we needed to solve, exercise was, so we needed to find a way to exercise without using the legs.
So I got my first wheelchair, worked out in it daily, and now I go 5k every day around my home city. My fatigue improved, as the research said it would, and I’ve never looked back.
Now the problem I’m aiming to solve is that of my bladder. I can empty using self-catheterisation, but filling is a problem. As the bladder fills it periodically tries to empty. Just randomly I’ll be in a meeting, or teaching, and the bladder will alert me moments before it makes every effort to urinate. There are some medical solutions to this problem and I’m seeing my urologist next week. My complex problem solving is working here, though. I find that if I allow the bladder to fill fully then catheterise, go from totally full to totally empty, it seems to somewhat reset the bladder’s internal sensors. I can also modify my water intake so that after emptying fully it doesn’t refill for a beat. So here’s the current strat: Drink a lot of water. Stay seated to help with the spasms. Wait for the bladder to fill completely. Catheterise, then don’t drink again until 20 minutes before you know that a toilet is available to you, then drink a lot to hydrate. It’s an odd strategy but it seems to keep things under control. The pickle is with longer teaching sessions, where 3 hours is too long not to drink before you start to get dehydrated.
I’m still working on it.
Complex problem solving is about understanding the problem well enough that solutions start to present themselves, then trialing those solutions and monitoring their effect. With a list of little solutions, gradually the problem becomes more manageable or, in some cases, is solved.
Fatigue is an incredible example. I used to get terrible fatigue, as many of my MS kin will appreciate, but the research suggested that exercise would help. But exercise was hard when I couldn’t walk for long or run at all. With the wheelchair, my Rocinante, we can go 5k every day and my fatigue has gone from constant and severe, to much more intermittent (like after I eat or am too hot) and much easier to manage.
We keep going until we have a plan that makes the problem bearable.
What I didn’t appreciate was how much fun solving these problems could be. Each challenge overcome is like finally felling a new opponent and moving to the next, and you start to feel like you might be good at this, and new opponents on the horizon start to look far less threatening.
For me, I have a written plan for every single symptom I experience in my symptom management diary. And you know what the first rule on every single plan is?