The Day I Knew I Had to Take Control of My Health

I clearly remember the day that I knew that something was ‘different’ about my Multiple Sclerosis; it was on a sunny May morning, when my daughter was just about to turn two years old and I had decided to go out for a run.  I was used to regularly running 5k around our little town and enjoyed this ‘me’ time – it gave me the chance to gather my thoughts so I could be a bright and refreshed mum, ready to take on all the tasks that parents of young children do.  Except, on this May morning, I couldn’t run.  My legs would not automatically lift as they usually did, I was tripping over tree roots along the canal path that I was following.  I knew that feeling – and I hadn’t felt it since about 15 years earlier, during an MS relapse which had taken away the use of my left leg for a couple of weeks.  Although I had had other relapses since that time, they were few and far between (the last one being 7 years earlier) and only ever affected my eyes, giving me blurry vision for a short time before going back to normal.

So what was different about this one?  All I can say is I just knew.  I knew it wasn’t a relapse because as soon as I stopped running, my legs went back to normal, and I could walk with ease.  Usually, when I had had a relapse, the motor difficulties were there all the time until they subsided after a few weeks.  The MS Trust confirms that new or worsening symptoms must last for at least 24 hours to be considered a relapse.  Over the next year or so, my instinct was confirmed; the ‘heaviness’  came on more and more quickly, first whilst running, then during aerobics, then whilst walking, so I was walking with a limp whenever I took my kids out.  It just kept getting worse, with none of the ‘remitting’ (improving partially or completely) that I used to have.

After a period of panic, wondering whether I was stepping into Secondary Progressive MS (SPMS) territory, when relapses become fewer but disability increases, I made a change – I decided to stop being passive about my health and start being active; to start taking control.  I decided that it was up to me to research my illness, to find out what may help and to be in charge of keeping myself as well as I could be.  It is a shame that my health had to make such a sudden decline for me to start making some changes (and, yes, I was confirmed as having transitioned into SPMS a couple of years later), but, ultimately, I am pleased that I have made the changes that I have.  It’s like I suddenly realised that no-one could look out for me as well as I could and that this meant making a few lifestyle changes.  Would they work?  I wasn’t sure, but how would I know if I didn’t try? 

For the past six years, I have been following the Overcoming Multiple Sclerosis programme, an evidence-based lifestyle approach that focuses on diet, exercise, meditation and the use of Omega 3s and vitamin E to help you keep as well as possible with MS.  Sticking to the programme helps me to manage my fatigue, stay calm and may even be slowing down the progression of my disease.  I have friends who have had no new disease activity since starting the programme, with them staying relapse free and in remission.

After a little ‘blip’ earlier this year in regards to the diet, I am now right back on it and feeling a lot better as a result.  So, what have I learned?

That Every Little Bit Helps

Its ok to take baby steps into helping yourself – maybe starting by changing just one aspect of your diet rather than a complete overhaul, or going to bed at the same time every night.  Hopefully these baby changes will help you feel empowered to move onto bigger ones

To Expect Blips

No-one is perfect and there are likely to be times when sticking to your health programme doesn’t go to plan – I know that is the case for me.  I think the thing that helps me at these times is just to brush it under the carpet and to think ‘tomorrow is a new day’.  This helps me get back into it.

To Have a Goal in Mind

Having a chronic illness can make it difficult to plan, as symptoms can be varied and unpredictable.  However, goals can be as big or small as you like.  My personal goal is to ‘stick to the OMS Plan’ as far as I can.  This means that, on those days when exercise is just too tricky, I know that I can make up for it by making sure that I take 5 minutes out for doing something sedate, like meditation. Each day I might also set myself a mini goal, like doing something every day that makes me feel good, such as reading a few chapters of my book, painting my nails or enjoying a lovely cup of coffee.  I see these goals as just as important as my diet and fitness goals.

To Do My Research

Keeping up to date with the latest research on what has been shown to help my illness is massively empowering.  I find that I can talk confidently to my doctors about upcoming drug treatments, for example, and, as a result, feel like they take me seriously.  Sometimes it a case of even doing a quick google search – MS+Yoga, for example, brings up some great exercises that I could discuss with a physio to see if they may benefit me.

To Plan Ahead

When it comes to diet, I find that it really helps to plan ahead to ensure that that I will have something available to me that will help me stick to it.  This may mean googling restaurant menus, asking chefs whether they would be willing to adapt something for me, or packing my own snacks for a day in case there is nothing suitable available.  I have found that most places are more than happy to provide something with a little bit of notice.  I also ‘look ahead’ to see what is happening over the coming days and weeks.  I know that I struggle with too many busy days – my fatigue and mobility worsen – so if I have an event coming up I ensure that I have some clear days to recover after.  This means that I can prioritise what is important to me, so I don’t miss out too much.  Sometimes this means…

Saying No

This is still a difficult one for me to come to terms with – sometimes I have to miss out on family outings or nights out because of my MS.  Although it can be very frustrating for me – as I am sure it is for my husband and family – having the confidence to put my health first means that I, and they, benefit in the long run.  It helps to preserve my energy for the outings or events that I really, really don’t want to miss, like watching my little boy swim in a gala or taking my daughter out for her birthday.

To Not Forget to Laugh

Research shows that happy people live longer; dealing with chronic illness may not be a laughing matter, but we should all put time aside to look at the lighter side of life.  For me, this means catching up with my friends for dinner, where I am guaranteed a few belly laughs, or watching re-runs of The Office.

To Remember My Mental Health

Mental health is just as important as physical and it has been estimated that up to one third of us with a serious medical condition experience symptoms of depression.  In my experience, I am asked about physical symptoms from my medical team, but not mental; it has been up to me to approach my GP.  Yes, I try and exercise but, for me, taking steps to support my mental health has been the most rewarding – I now regularly meditate and and am on a low dose anti-depressant.  It is not something that I am ashamed of and I feel so much better for it.  As mentioned above, I also spend time every day doing something that I love – writing, reading and spending time outside take me away from my MS and are just as important as my medication.

To Not Compare Myself with Others

It is so, so easy to compare yourself to others and it is easy to feel disheartened whilst doing so.  People may have the same illness, but actual symptoms and manifestations of that illness may differ – so what works for one person may not work for another.  I find that what works for me is to focus on my own strengths – I try and praise myself for still putting my health first, even though it has been an up and down journey.  And I try and look at the positives – I feel just as determined to stick to my plan to be as well as I can be, as I did at the beginning.  I don’t beat myself up if I slip up.  I just get right back on it.

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Because, that’s the thing; I do slip up, and I am definitely not perfect.  I still dream about melty cheese and very occasionally give in to the craving, especially if I am feeling stressed or down.  I don’t know what the future holds for me in regards to my MS – it is a degenerative disease that I have had for almost 25 years and is now in the progressive form.  But I do know that by doing everything that I can to try and halt the progression makes me feel mentally stronger and good about myself, and I like to think that my kids are watching my determination and learning from it.