This is My MS – Lifestyle

This is my last blog post in the ‘This is My MS’ series (see here for my post about my physical symptoms and here for my post about my mental health).  I know that I am very nosy eager to hear about how others try to manage their MS and the symptoms they have, so I thought that I would let you know about the steps I take to try and and live as healthily as I can, despite my diagnosis of Multiple Sclerosis.  A bit about me first:

• I am in my late 30s
• I was diagnosed with MS when I was 15 years old (first symptom aged 13)
• I am married with two kids, aged 9 and 7
• I work 3 days a week (though my symptoms are making this level of work progressively more difficult)
• I have always been interested in health and well-being and before my symptoms started increasing 5 years ago, I was a keen jogger and exerciser

My increase in symptoms really was a shock to the system.  Prior to this, I never adapted my lifestyle to help my MS.  Yes, I exercised and ate healthily (on the whole) but I didn’t avoid any food groups or go out of my way to avoid stress.  Suddenly, here I was a whole new set of symptoms (fatigue, leg weakness, dizziness) that wouldn’t go away and, in fact, were getting more pronounced every month.  In a desperate attempt to slow down what was happening to me, I started researching everything to do with MS – I was open to try anything, if it indicated that I can get some reprieve from the incessant progression of the disease.  This is how I came across the Overcoming Multiple Sclerosis lifestyle programme and, for the past 3 1/2 years I have been trying to adhere its recommendations, namely:

• A dairy-free, plant-based diet plus seafood, with low saturated fats
• High Omega 3
• Regular exercise within your abilities
• Stress reduction through activities such as mediation
• Vitamin D supplementation (there is a strong correlation between Vitamin D deficiency and MS)
• Use of MS medications as needed

Here is a short video about the evidenced based OMS programme:

[youtube https://www.youtube.com/watch?v=Rn6X2D0_VAE&w=560&h=315]

I know other MS’ers who follow the programme and have found that they no have ‘no evidence of ongoing active disease’ on their MRI (see this post on ‘My OMS Life’).

I am under no illusion that I will fair the same as other people who follow OMS; I have had MS for almost 25 years, so even when I was ‘symptoms free’, damage was still silently taking place.  Unfortunately with MS, when the deterioration gets too extensive, the nerves are irreparably damaged.  My hope with OMS is that I am able to slow down any further progression and that I am able to live as healthily as I can despite having a long standing progressive neurological condition.

Do I stick to it perfectly?  Hell no.  I don’t have the energy to exercise as frequently as OMS advises, I probably drink a bit too much coffee and wine and I can’t stomach the flaxseed oil that it advocates due to its high omega three content.  But I do enjoy my plant-based diet and rarely deviate from it.  My regime looks something like this:

• Diet – Plant-based diet (no dairy) with seafood (including homemade energy balls or fat-free cake as treats)
• Exercise – adapted yoga (I use a chair to help me and I love to use videos by Yoga With Adriene), use of free weights for activities such as lunges, squats and bicep curls.  I try to do something 3 x a week
• Supplements: Vitamin D3, Lipoic Acid (there is evidence that this may support brain health in MS – see this link), Vitamin B12
• Medication: Tecfidera (a disease modifying drug), Baclofen for spasticity
• Meditation – I use the Headspace app or search for meditation on YouTube.  I also love my yoga time as I find really concentrating on my breath helps me to relax and ‘zone out’
• Natural remedies – I like magnesium oil to help my leg and toe cramps and I find roll-on relaxing scents such as these can really help me to sleep if I am struggling
• Aids and equipment – I use crutches and scooter to help me get around, a shower stool and ledge to help me in the shower and wear a ‘Lifeline alarm’ around my neck in case I have a fall when I am alone in the house.

Since taking care of my body I do feel generally healthier; I like having a fresh diet, I rarely get sick and I am much more aware of my body and what it needs to feel better, whether that is more rest, more stretching or a funny film to raise my spirits.

Adapt, Pace, Prioritise

Perhaps one of the things that has been the most difficult for me to change over the past few years has been to adapt to my new energy levels.  I basically don’t have any.  I am your typical sufferer of fatigue who can sleep all night and have a 2 hour nap in the afternoon but then still spend my time awake exhausted and yawning.  I’ve found that by being as organised as possible and considering rest time to be as important as activity time (if not more so) is paramount.  A few things that I find helps:

• Using the calendar and ‘notes’ apps on my phone to make sure that all my plans are written down (I have a tendency to forget)
• Trying to get all my activities completed in the morning (exercise, any house cleaning, phone calls) so that I have the afternoon free to sleep (provided the kids are at school and I am not at work)
• Use of the alarm app on my phone to remind me to take medication
• Not planning anything for a few days if possible after a big event, for example a holiday or a party
• Accepting help – again, not always easy, but I know that if I was able to help someone, I would want to.  I don’t know what I would do without the help of my family and in-laws.
• Not being afraid to say ‘no’ – this is a difficult one for me.  I don’t want to miss out but I know that my body can’t do everything that I want it to, so sometimes I just need to say no to a social event and save my energy for the most important.

So, that’s it! I’m not the healthiest but I like to think that by listening to my body I am able to be as well as I can be at this stage of my MS.  I should also say that, although I love OMS, it is a lifestyle choice and so isn’t for everyone – I hope that everyone can find a lifestyle that works for them.

Have a fab week everyone!

My Exercise, as Someone with Progressive MS SPMS and My Body Image