MS doesn't have to mean Mega Size

I was massively overweight. But I was also in despair: being a wheelchair user I thought I could never lose it. Being big was just part of my new, and rather miserable, existence with MS. Exercise was impossible and comfort eating was one of the only ways I had of making life any better. How wrong I was! A year later and I am nearly 5 stone lighter: with improved mobility, easier manual handling for my carers and an improved self image. So how did I do it?

Here's how ... I put my thinking cap on and realised a simple equation: I was burning hardly any calories due to my limited mobility. One needs around 850 cal a day to maintain life's bodily functions, therefore I needed to consume only around 1000 cal a day. No more. So I needed to drastically reduce my calorie intake. Not rocket science! I started by giving up alcohol (unfortunately very calorific) followed by other calorific foods such as dairy products (cheese, cream, butter plus all chocolate, biscuits and sweeties) and replaced all sugar with a marvellous product called Splenda (it has all the look, feel and taste of real sugar but not the calories). Butter was replaced with Flora. Bread was replaced with Ryvita or rice cakes. My main meal was lunch. Supper was a light snack of soup with Ryvita and cottage cheese. I discovered Weight Watchers desserts (helps you get that much needed chocolate fix) or chocolate soya desserts made by Alpro (dairy free and therefore very low-calorie). I became an avid reader of labels.

Calories are usually described as ‘kcals’: anything over 120 kcals was out. I had a monthly weigh--in the Centre which quickly told me that I was doing the right thing and kept my spirits up. Yes, it was a punishing regime and took a lot of self-discipline which I didn’t know I had, but was so worth it. Someone asked me recently why I did it. I replied that if I was really honest, it was largely down to vanity. The other person looked crestfallen and only perked up when I mentioned the other, more medical, benefits. Thinking about it I wondered, ‘Are disabled people not allowed a little vanity occasionally?

Surely we are entitled to this, the same as anyone else and it can be a positive thing?’ I was reminded of visiting a disabled toilet on more than one occasion where there was no mirror above the sink. Are disabled people not allowed to be interested enough in their appearance to warrant this? I believe this is something worth hanging on to. After all if you don’t care what you look like, it sends a clear message that you have given up on yourself. Any woman knows the value of a comb through their hair and a bit of lipstick before going out: a simple thing like this can make you feel like a million dollars. A good shave and a dab of aftershave can have the same effect on a guy. Taking pride in your appearance can give a much-needed boost to one's self-esteem and self-confidence. Those of us with either limited mobility or in a wheelchair need this more than most. If you can't manage things for yourself (as I can't) carers are usually more than happy to help. Just make sure you don't end up looking like something off X-Factor!

August 2013

Has MS made me a better mother?

Am I a bad mother?   Have my children really suffered because of my MS?  At times I have felt enormously guilty about the possible negative effects of my MS on my mothering.  For example, I have never been able to climb the stairs and tuck my children into bed and read them a bedtime story.  Many times I have been a spectator only in my wheelchair while my husband cavorts on the beach with the kids or plays football with them in the park.

Recently I was asked by the local education authority to complete a form outlining my daughter’s family background and explaining why she deserved a chance at a grammar school education.  I was reluctant to suggest that she was somehow at a disadvantage due to having a disabled mother, and so I chose to list the benefits instead.  Actually this was a very positive exercise for me.

I was quite surprised to find that there were unexpected benefits.  Both kids respect other people’s differences which don’t seem to phase them at all, whether this be physical or mental disability, religion, sexual orientation or nationality.  They empathise with others easily, something which much older people seem to find difficult.  To name just one example, I have always been enormously proud of the way that they stick up for other kids at school who are just ‘a bit different’.  They don’t appear to follow the pack [children can be so cruel] but to make up their own minds instead.

They are extremely helpful and quick to assist others because they are so used to helping me with practical tasks.  I don’t know many 11 year olds who will make someone a cup of tea without being asked, but my son will.

Leaving them and my home when I had to go and live in a nursing home almost broke my heart however I have since been compelled to find the advantages.  I have more time, in between visits, to think carefully about my words before I speak to them.  Consequently I manage to avoid making the knee jerk comments that unfortunately many mothers do, that can be so damaging.  I do not have to nag them about tidying their bedrooms or wearing a coat outdoors.  It does not concern me how long they spend talking on the phone to their friends or how long they spend in the bathroom.  Instead I can be a friend and confidante during the precious quality time that we spend together.  I can enjoy their teenage years, watching them blossom into adults and accompanying them on this exciting journey, instead of being challenged and threatened as unfortunately many parents are.

In this way the negatives have been transformed into positives.  And so I am that kind of mother: one who loves her children more than life itself.  MS or no MS, the same as any other mother.

August 2013