SPMS and My Body Image

Hi everyone, how are you all?  Yet again it has been ages since I last posted and for that I can only apologise.  Time seems to be whizzing by so fast – my Mum used to say that it seems to get faster the older you are and I can confirm that this is true!

So, body image and MS…. this is a big subject for me and I am not sure if I can explain my thoughts well enough, but I thought that I would try.  There are undoubtedly many others who are experiencing the same.

Body Image and the ‘old’ Jen

By old Jen, I actually mean the much younger version of myself, BS – that is, Before Symptoms.  Although I was diagnosed almost 30 years ago, I actually didn’t have any MS symptoms – unless I was having a relapse – until approximately 10 years ago. That was when I started noticing that my MS was changing (and I now know that’s when I started turning secondary progressive). Suddenly I had a whole host of symptoms that weren’t there before.

So the old Jen, BS, was an active, able-bodied woman, who enjoyed dancing, running,  swimming…But my body image was still pretty rubbish.  I remember being a teenager and getting up before school in the early ’90s to do a Jane Fonda workout tape and I know my reasoning at that time was 100% because I was worried about getting ‘fat’.  At that time, celebrities like Victoria Beckham were praised for being 8st a month after the birth of her baby and magazines had pictures with the ‘ring of shame’ used to highlight apparent ‘flaws’ on their bodies.  It was awful.

Through it all, I bought every magazine aimed at my age group, watched what I ate (even using fat-free salad dressing as a spread on my sandwich so I didn’t succumb to butter or mayo) and exercised.  I wasn’t ill as such, but I was very aware of myself and how I compared to others.

Until one year, when I was around 21 years old and I found out that a boyfriend had been cheating on me.  I poured all my energy into something called Tae Bo – a workout that focused on getting strong through kicks and punches.  Suddenly, I realised just how much exercise can help my mental health.  I imagined that I was punching all my anger out and it helped me to feel so much better. I soon found that exercise, for me, was a tool. It helped me feel better if I was upset or feeling stressed and feeling better mentally also helped me to eat in a more healthy fashion.

It was so important to me to keep up good exercise habits when I did a Master’s degree to become a speech and language therapist as the course was so intense and stressful. Exercise definitely helped me deal with that. And the result? My body image improved so much.  I started to do a job that I loved, met the love of my life who is an amazing cook and we subsequently went on to get married and have two gorgeous kids.  My body allowed me to dance around and run after the kids and I even managed to jump out of a plane from 15,000 feet with the family looking on. Feeling happy and confident was the key for me in regards to improving my self-esteem and body image, even if my body wasn’t ‘perfect’..

Body Image and the ‘Newer’ Jen

SPMS, at least for me, was subtle at first. I tripped when out for a run once and this slowly started happening more and more.  Over the past 10 years walking has become difficult and crutches, mobility scooters and wheelchairs are now permanent fixtures in my life. Cog fog, fatigue and heat intolerance are also always here.

Of course, age is a factor.  I think it is pretty common to find it a bit more difficult for most people to stay healthy and strong unless they eat well and exercise. Now I’m in my mid-40s, I would be silly to think that I could have the body that I had when I was in my 20s.  The pressure is still there for us 40 years and beyond though, isn’t it?  People like Kylie Minogue (age 55), Tess Daly (54) and Davina McCall (55) are all in their 50s and are regulars on our television screens. They look healthy, glowing and toned. Men also have to contend with actors like Ryan Gosling (42) getting his pecs and abs out in Barbie and Hugh Jackman (54) looking strong and fit in Wolverine.

Yes, I know they are all actors or celebrities and they are actually paid to look a certain way. But that pressure to maintain youth and health is always there. When you look at health and fitness magazines, for example, everyone is glossy, strong and toned.

Having SPMS adds a new complication; I can’t exercise anymore, at least not as I would have to do in order to improve my body shape and health.  But more than that, I can’t do the heart pumping exercise that I used to that helped me to maintain my emotional and mental health. Now stretching and chair yoga tends to be the only exercise that I can do in order to feel like I’m actually doing something to help myself. I miss getting out of breath and feeling strong and able. Meditation and yoga breathing exercises can help me to feel calmer and less stressed in a way, but I haven’t found anything that compares to the way that running or intensive aerobics used to make me feel.

I know that I feel so jealous when I hear about friends who are able to do the Three Peaks challenge or open water swimming. I know that I would’ve been right there with them doing it too.

I don’t care that I’ve obviously put on a bit of weight since hitting my 40s – just the other day, my daughter was trying to convince me to wear a skirt that I bought 10 years ago and still had in my closet. Though I tried to put it on and could hardly get it over my hips, I didn’t really care. I was happy to tell her that I’d put on weight, and I didn’t mind, because I don’t. But what I do mind is the lack of energy, strength and tone that my body used to have.

What Now Then, When It Comes to Body Image?

It seems like my body image woes have gone full circle in some ways. I wasn’t happy when I was very young and I’m not very happy now when it comes to my body. I am really conscious not to project this onto my daughter though, she is 13 and struggling with her own body image issues as I remember I did at her age. Even my 15-year-old son tells me that he feels pressure to go to the gym and look a certain way.

Having MS doesn’t make me suddenly think, “well, I’m happy with what my body can do” – yes, I’m aware that I can still walk (albeit wall-walk) at home, I can still drive an (automatic) car and using assistive devices help me to stay independent. But it obviously is no comparison to what my body used to be able to do. Working on my body positivity is an ongoing battle; this is how I try and do it:

Maintaining some kind of “exercise” regime

Yin yoga for stretching and stress relief (you hold the poses for an extended period of time and really concentrate on breathing through the stretches)

Chair yoga – to practice all those poses I used to be able to do standing (triangle pose, warrior 1&2), in the hope that it will help me to maintain my strength

MS Gym – with the focus on building up my neural pathways and strength to overcome some of my symptoms

I follow arm exercise tutorials on YouTube to try and maintain/build the strength in my arms

I try to eat as well as I can

In the hope that limiting fat, sugar and dairy will help me to not put too many more inches around my middle and to keep my heart healthy.

Eating well helps me to deal with my fatigue levels – I notice that when my fatigue is high, my mood also becomes very low

I try to make myself feel good in other ways

I treat myself to spa evenings in my home, using facemasks and listening to an audiobook to relax

I get my nails done every four weeks – it’s a routine I have with my mum where we go to a nail appointment then have a coffee in Starbucks. The chat and time with my mum is just as important as actually getting our nails done and helps my mental health to no end

I make things using crafts such as crochet and macramé to make things that I feel proud of and that I can gift to others

I volunteer with Shift.MS as a “Buddy” for other people with multiple sclerosis – I know how much it helps to talk to people who understand

Although my children act like they don’t “need” me anymore, I still do everything I can to be present in their day-to-day lives. For example, I take my son to his band practices and even saw him play his first gig a couple of weekends ago and I ask my daughter to show me the dances that she is learning in her dance classes.

What Can I Do More of?

I used to keep a diary when I was in my teens and 20s, and I wish I was more consistent with my journalling now; writing things down can really help me to make sense of my thoughts and feelings. After all, that’s exactly the reason why I started this blog! I’m not sure whether writing more will really help me with my body image and my feelings around that, but I know that writing is a good release for me so I should really try and be more consistent with it.

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What are your thoughts and feelings about your chronic illness and body image? I’d love to hear if there’s anything that you do that you find helps you to keep positive and not think of your lack of ability and how different your life and looks may be in comparison to your friends are those images you see online.

Till next time,