MS Awareness Week 2020: 7 “Hacks” For Living With MS

It’s MS awareness week, and while a certain pandemic has taken the spotlight this year, MS stops for no virus (in fact, the two make a disastrous duo). When I was trying to come up with a subject for an awareness week post, my first thought was to gather together photos of me from 2009 up until the present-day in a kind of, “MS through the years” type set-up. Unfortunately most of the earlier days photos featured a heavy-drinking, social-smoking, party girl who had yet to find value in pencilling in her barely-visible blonde ‘brows; someone I no longer recognise and I realised that she hardly painted a positive picture of someone living with a diagnosis of MS. More on her at a later date, perhaps.

Instead I’ve decided to draw inspiration from more recent years. In about 2014 I began managing my health more effectively – a desire to remain as fit, strong and energised as possible started to take root. Initially my student diet of cheesy spaghetti, Wotsits, potato scones and chocolate (the last 3 sometimes at the same time, don’t knock it ‘til you try it) evolved into a much more balanced fare, and from this, the lifestyle changes snowballed, which led to me taking a much more invested interest in multiple sclerosis (only a mere five years post-diagnosis), and the self-management of my ongoing symptoms. So with that in mind, here are 7 “hacks” I’ve learned (or am learning…) for living with MS:

Prioritise sleep above all else

We all know how vital getting enough sleep is for our optimum function and mental wellbeing, but I found out the hard way how much of an impact prolonged lack of sleep has on our bodies. Last summer into autumn I went through a period of insomnia, and I genuinely didn’t know how my body was surviving. At one point I thought that either, a) my body would just stop functioning and I’d die, or b) that the final, fragile thread barely holding my wired mind together would snap and I’d lose my grip on reality, permanently. Needless to say, my physical symptoms went through the roof. Pain intensified, I fell over more, my balance was terrible, I was walking into doorframes more often than through doorways, I was whacking my head off walls and shelves on the other side of the room (that one’s still a mystery to me), the list goes on. That period was one of the worst, most frightening experiences in my life to-date, but it really hammered home just how important sleep is. More than that; how miraculous. Now, whenever I’m going through a particularly bad MS-spell, the first thing I think is, “how am I sleeping?” Consistent good sleep is still a work-in-progress for me, and until I achieve that I don’t think I can know my “true” new baseline MS-wise. It is wellbeing objective number one, as it should be for everyone, with or without chronic illness.

Links to the NHS information on insomnia, and a book I read by Dr Tim Cantopher; “Beating Insomnia: Without Really Trying”.

Amazon audible also have a free series called “Sleeping with David Baddiel” which has been quite interesting (and helpful) for me.

Be proactive rather than reactive

For years I only “managed” ongoing symptoms as they flared. Example: I only consistently stretched when my spasticity was bad, and as soon as it started easing off, I stopped (consistently) stretching. Every winter for a few years my spastic legs came back with a bit of a bang, until last winter when it was barely noticeable. The difference? (I assume, although obviously this could also be a happy little coincidence) In March of last year I started doing a weekly Pilates class and stretching (almost) daily, regardless of stiffness or aches. In short I started being proactive in managing these symptoms, rather than reactive, and utilising techniques regularly and consistently, irrespective of symptom intensity.fbtFocus on “can do”, not “can no longer do”

This was a piece of advice given to me by someone at a brilliant support centre in Glasgow (Revive MS Support) following the introduction of my walking stick and slight decline in my level of mobility. Don’t dwell on what you are no longer able to do, and find interests you can still partake in. I joked that to replace hiking I should “just take up knitting and be done with it”, a moment of levity that planted a seed, and I later started teaching myself to knit! (Great for the fine motor skills) I also have a little inkling of a plan to contact Riding For The Disabled, when the world returns to normal, as I’ve always loved horses. Blogging is something I can do from the comfort of my own bed, and strangely I find writing relatively easy and free-flowing, whereas reading now requires a Herculean effort (I rarely even read back what I’ve written, that’s my partner’s job so blame him for any missed typos…) Covid-19 has, in a way, given scope to new ways of thinking of alternatives; before it would never have crossed my mind to suggest to my friends that we do drinks night via Zoom if physical-fatigue meant I couldn’t go out…now I will!DSC_2407Prepare for the “bad days”

  • Keep frozen meals in the freezer for nights you can’t muster the strength or energy to cook; in our house we make a “big meal” on a Sunday (usually a big veggie lasagne or a huge pot of dhal), and divide the excess portions into Tupperware for freezing.
  • Try to recognise any patterns in the “highs and lows”, something that I know is easier said than done, but for me the biggest “low” I can consistently identify is the days leading up to, and the first few days of, my period. Recognising that means I now know not to make plans for those days, and cut myself a bit of slack.
  • Last year I had a couple of particularly bad infection-induced periods of fatigue, and created an “illness box”. The idea came to me when I didn’t have the energy to move from my bed, but was desperately dehydrated, and fancied a cuppa. Now I have a kettle next to the bed, and a box containing a mug, teabags, bottled water, snack bars, face wipes and tissues. A little survival kit for the rare days when energy is just too low to get up. The kettle, mug and teabags are also useful when I need a bit more time to “get going” in the morning!

If you need to start using mobility aids, embrace them and make them “you”

I’m going to use a potty-training analogy. Yes, yes I am. Now I’m not a mother, but I am the eldest of four, the youngest of whom is 20 years my junior, so I’m using that as the reason that somewhere in the back-end of my brain lurks the information that if you’re potty training a child, you should get them to choose a potty, and then decorate it with stickers (also of their choosing) so that the potty feels like “theirs”. Something that is friendly, and good, and that they’re proud of – that they can tie all sorts of positive connotations to. That they want to use. I would argue that the same principle goes for mobility aids. Don’t begrudgingly keep using medical-grade equipment that you’ve been given, or reluctantly find the most basic stick on Amazon. Mobility aids may need to become an extension of your body, so treat them like that – take your time to find the most beautiful that your budget allows, and if you’re really crafty you could even customise one to make it uniquely yours, like those toddlers and their potties.

Learn to listen to your body

This one is still very much a work-in-progress for me. Try to rest when you need to; don’t attempt to “push through”. (Unless you’re driving, or standing in a queue at the supermarket, or midway through a presentation to the board of directors at work…rest when you need to, within the boundaries of what’s safe and sensible). Learn to be your own advocate; say “no” to things that you don’t want to expend energy on, but that you feel you “should do”, and then are left with no energy to do the things that actually bring you joy. In short, be kind to yourself. It’s a hard one for many of us, including myself, as it involves unpicking years and years of being told that our worth comes from our productivity. That if we’re not “doing” then we’re surely “failing”, or simply “lazy”. That our value as a human-being comes from how we make our life profitable within the Capitalist structure of our society. But that’s a whole different blog post.

Finally, importantly; don’t worry about what other people with MS are doing (especially on social media)!

Everyone is different, and everyone’s MS is different. Take advice, exchange experiences and share stories if that is something you find helpful, but equally don’t feel like you should be “getting involved” in the “MS community”. It took me 10 years to start writing about my own MS, and reading about other people’s experiences, not out of fear, but because I just wasn’t interested in it. Even now I probably wouldn’t choose to attend a group thing in person again, but I am finding value in communicating with people from across the world via Instagram. Don’t be afraid to end exchanges if they are having a negative impact on your own mental health, or not providing the supportive exchange you are looking for; in the past I have found outlooks and conversations to be quite negative (often with a strange air of what I call, “faux-positivity”, that makes me cringe to high-heaven, see: “I have MS, but MS doesn’t have me” and other popular catchphrases), or very “symptom-driven”, which isn’t something that I find much value in discussing. You might find it to be exceedingly beneficial. Find your own “people” within the community. Or don’t.

Don’t worry about what other people know; some could tell you the names of the parts of the brain and spinal cord where each of their lesions are…(not me), some have an in-depth knowledge of the science behind how specific DMTs work (also not me), some religiously track their symptoms, some don’t (guess which camp I fall into).

Some people use their online presence to advocate more “natural approaches” to MS-management, including following restricted diets. All I will say on this subject is do your own, extensive research before changing your diet, or using any natural remedy, and remember that MS is not your fault. Please don’t let anyone make you feel like you’re not “doing enough”.

It should go without saying that for any medical or symptom-related concerns, or if you’re considering trying any natural remedies, go to your MS nurse (if you have one), or GP first – don’t seek answers on social media. Trusted organisations like the MS Trust and MS Society may also be able to alleviate anxieties and provide some information.

That got a bit preachy towards the end there, I do apologise. Above all, remember that no two cases of MS are the same. Focus on yours, because ultimately there really is no right way to live with MS. (So ignore this entire article, and every article, if you wish).

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