Lockdown Diaries | Managing Early MS

It’s been over six months now that I was given the unwelcome news that yes, I’m in the early stages of MS (auto-immune condition multiple sclerosis)…

And that I was advised now would be the time to start medication. To date over the last few years I’ve experienced two obvious symptoms – double vision that came on suddenly and slowly resolved over a few months and ongoing numbness in my fingers, which I didn’t think much of at all. And fatigue, which is a hard one to classify as so many of us experience tiredness to different degrees for a whole host of reasons. But I’ve learnt to recognise my MS related tiredness as the kinds that hurts – you get an unpleasant tingling in varying parts of your body and your eyelids close like weights. Sometimes it passes if you lie down for a while, sometimes it stays with you. A number of MRIs have shown up my separate occasions of lesions (inflammation scars on the myelin sheath that coats the nerves in your brain, effectively preventing information and signals from travelling down that neural pathway – the tiredness is caused in part, from what I understand, by the brain having to compensate for these blockages).

My initial plan was (and currently still is) to hold off on the various medications on offer at the moment (for now there’s no side-effect free magic pill that  halts the progression and mends the myelin sheath) and put all my energies into what I eat, how I exercise and how I approach my life.

The food is easy enough. The diet I follow is part of the OMS programme to which I have committed (based on the Swank diet – 50 years of research by Dr Swank showed incredible results for people at all stages of the disease following his nutrition guidance) and is easy enough; especially these days, with oat lattes and avo on toast de rigeur. In a nutshell, it’s vegan plus seafood. The aim is to cut saturated fats, so much of which we consume today in dairy and red meat. By cutting these out and swapping in fish instead, you meet the approx 10g of saturated fat  per day guideline easily.

After six months of the diet, sensation to my fingers has completely returned, I rarely get the tingling fatigue (unless I’ve really pushed it) in addition to which, the welcome side effects of my periods pains having almost gone entirely, my PSM dramatically reduced, my rash prone skin much calmed, energy levels massively up and I no longer have, what I now realise was a bad case of brain fog. My mind feels as whistlesharp as it did when I was a teenager. Who knew!

The exercise (which helps neuroplasticity, ie. the brain re-wiring around blockages) doesn’t need to be extreme. At the moment I alternate a ten-minute jog with half an hour of yoga every other day. And with the diet, my body feels strong and limber, and I surprise myself everyday with new physical endurance. A two-hour straight weeding session is something I can do now without giving it a second thought. And I don’t collapse in a heap afterwards.

Other aspects of the 7-step OMS programme are: taking regular doses of Vitamin D, flaxseed oil and practising meditation. Like many on this programme (check the OMS podcasts, so useful to listen to!) I struggle with the mediation. So I’ve adapted my already in-built routines to try and build it up. Ever since I was a teenager I’ve always done a ‘body scan’ to help me get to sleep – focussing on each part of the body to relax with deep slow breaths.

And this leads my into the other key part of tackling my condition. Dealing with stress. Stress is a relapse trigger for many people with MS and looking back it was at times of high stress that seemed to connect with my progression. So removing stress from your life and learning how to deal with it are necessary. Dealing with toxic issues in your life, re-jigging how you live to avoid daily physical stress are things I’ve been working on.

And the result in the physical shape of my life is that I’ve ended up making it alot more home based. Less dashing about here and there, less trying to cram everything into an impossible time frame. More having enough time to do things and going at a slower pace. And of course at home it’s easier to make the right and eat the right food and get the exercise in.

In light of that, lockdown has come fairly easily to me – especially as as a freelancer I’ve worked from home for many years now. And more time at home gives me more control over the shape of my day and allows me to work on being as well as I can. And for the moment, I’m good with that. As I try and stop the progression of my MS in its tracks with a nutrition and lifestyle approach, for the moment I feel positive and that maybe I can do it. And possibly the next step is taking things even further, like many on the OMS programme do and embrace a life out of the city… Next update soon 😉

To read more about the OMS programme visit overcomingms.org

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11 Comments

  1. Thank you for sharing!
    You sound so positive and on top of things in regards to the MS prognosis…im definitely a person who looks for more natural and non-medical solutions or assistance! The diet and exercise programme sounds like one that could be used for most people and especially in regards to the lack of energy and feeling of fatigue! this is something I suffer from but never go to the doctor about it as I feel I would be wasting their time but following a recent call from my doctor to see how I was (I am on anti depressants and they like to see me every 6 months but as COVID-19 had everyone in lockdown, they called instead which I was very impressed with!!) I said about my tiredness and she’s going to organise blood tests once this is all sorted and I can get into the surgery.
    I’ll definitely be looking at the diet!
    Take care and keep safe! Hannah x

    1. Oh thankyou Hannah! I must admit I’ve felt nothing but better & better since I’ve been on it – doing it really properly these last six months has really brought in some very obvious improvements. Totally agree I think so many would benefit from it – eg. v good for all sorts of inflammation problems. As a side effect you cut out sugar & all processed foods so really good in many levels 🙂 if you can bear giving up the dairy and meat it’s easy from there! 🙂 it’s really helped with mood too, very noticeable, so much more balanced and less erratic emotionally… highly recommend! Xx

  2. I am so happy to read this and see that your diet & lifestyle changes are working so well and that your isolation is going as well as it can. So looking forward to see where things take you after this!

    1. Oh thankyou Dorothy! Yes it’s been a strange time but bizarrely has made it easier for me to do what I need health wise so feeling very positive & that life might not be over after all 🙂

  3. I’m very sorry to hear of your malady. I’ve been following you for several years. It’s not so much an affection for fashion as an appreciation of you as a photographer and of you as your own best model. You are a remarkable observer and chronicler. You have shown me things I would otherwise have never seen, always the hallmark of a fine photographer and writer. I hope your struggle is successful. Please do keep us informed. You’ve created many nosey-parker friends who care about you and are rooting for you and your loved ones.

    1. Hi Bill, thanks so very much for your lovely comment. Really unexpected and quite wonderful to hear – very much appreciated. If I’ve managed to show or express something worthwhile or in anyway meaningful through this digital medium that makes me very happy indeed! I too hope I can happily take things forward, I’m lucky to have fantastic family around me and I hope to continue as is for as long as possible. And hopefully with some new adventures along the way 🙂

  4. Sorry to hear you are having to deal with this but great to read that you have found a diet and lifestyle which is working for you to keep it at bay. As someone who lived and thrived in cities until the age of 30 I made the move to the country and, after an initial wobble, have never looked back. The pace of life slows (in a good way!) and you naturally spend more time outdoors. The one thing I struggled with was being dependent on a car (we were quite remote to begin with) and I really missed opening my front door and being able to walk to a shop or friends house. Just something to consider when choosing where to be and how rural to get! Wishing you all the best with this exciting new chapter.

    1. Ah that’s so interesting to hear! And yes I totally hear you – I’ve loved living in cities all my life for exactly that reason. And I certainly didn’t expect to find myself maybe not quite strong enough to fully immerse myself in them… These last couple of months I’ve been getting a good idea of the reality of living remotely and finding myself better suited to it than I imagined is proving quite a surprise! But I’m ready to roll with the changes – and as long as I’m feeling healthy and strong I want to give myself as many chances as possible… it helps that I’m the only one in the family who’s been so city-centric, the rest of them crave the outdoors in a way I never have, haha! So that makes the decision an easier one to make, and am always ready for a new adventure… !

  5. Just caught up with this. Wow, had no idea and how amazing are you with your positive solutions. I don’t have any ailments like this but could def do with overhauling my sugar dependent diet! Agree that lockdown has been unintentionally great for our hectic lifestyles, I’m not sure how I’m going to go back to endless coffee meetings and launches!

    Also echoing Bills comment above! Xxxx

    1. Oh thankyou N!!! Sorry only just saw this comment – my laptop has been out of action! Yes, so agree it’s been an eye-opening time in many ways… much love to you xxx

  6. Julia your approach is so positive and uplifting. I can imaging the change in your diet has had huge benefits. I would imagine that lockdown has been welcome to you (Personally, I’ve loved it and I’m reluctant to change it).

    I am sorry to hear that you have to cope with this diagnosis and how it will affect your life, however, like anything, it’s how we deal with these things is what’s important xx