My MS
 

You may be wondering at the title to this page, how could my MS be so different to everyone else?  Fact is, everyone who has MS experiences a different range and severity of symptoms.

The MS Nurse who spoke to me shortly after I was diagnosed, said two things that I have never forgotten and have found out for myself are completely true.  First she told me, "You are the expert on your MS" and secondly that MS "is a bitch of an illness".  I'm sure anyone with MS will agree with me that she was right, thanks Josie!!

What is Multiple Sclerosis?
Don't worry, I'm not about to launch into a graphical description.  If that's what you want, try here or here.  Basically it's a chronic disabling illness of the central nervous system that can impact on any area of your life.  I want to stress here that every person with MS is different and will experience a different range and severity of symptoms.  After all, we're all individuals!

I've had a bit of a rough ride at times (see My Calendar of MS) but two things have helped me stay smiling throughout - a positive attitude and a good sense of humour.  I've been fortunate to have friends and family who helped me keep these (see My E-mates), a neurologist who is always honest with me and a fantastic District Nurse who has been an inspiration.

My parents have been my main carers for the past 4 years and I know I would not be as well as I am now if it wasn't for them.

So how am I affected now, well I do have to use a wheelchair (hence my on-line nickname Surfin' Wheeler) as my legs are refusing to co-operate.  There is reduced feeling and dexterity in my hands (my typing has become slow).   I do have slight vision problems (aka "Optic Neuritis") which makes reading a little difficult - Yes, that is why this text is so large and the background is yellow!  My left hand is also behaving a little wildly since my last relapse (aka tremor) and I now only type with one hand - it does get plenty of exercise with all this rambling!

The list goes on!  One other aspect to my MS, is my poor upper body balance and strength.  This means I always need to have my back supported when I am sitting and need some help when moving off my wheelchair.

I still have some control over the waterworks, although drinking 2 litres of water a day (highly recommended to prevent infections) can cause slight accidents.  My taste buds went into the twilight zone during the first year of MS and I doubt they will ever return!  I was a chocoholic but now can take it or leave it.  I've been mostly vegetarian all my life, but now (other than prawns - my vice!) I am totally veggie.

Recently the "Best Bet Diet for MS" (please read and sign the petition) has been getting a lot of publicity.  I do believe that nutrition plays a vital role in MS and should be researched more.  I've said before, we are all individuals, so what works for one person may not necessarily work for another (always check with your GP before starting any diet).  This particular diet seems to cut out all the food I eat and it would not be suitable for me.  I stick to the advice I was given when I was first diagnosed and I feel great, i.e.
                eat a low animal fat diet,
                eat healthily
                drink Cranberry Juice every day and
                take Oil of Evening Primrose every day (I also now take a
                multi-vitamin tablet every day).

I have changed my diet recently after reading a lot on the subject.  I have stopped eating chocolate and dairy products, have cut all animal fat from my diet, switched from cow's milk to rice milk and cut down on saturated fats.  I am trying different supplements too - extra Vitamin D and Aloe Vera tablets daily.  I have stopped the latter now, they were supposed to give your energy a boost but just made me more sleepy!

Although I don't have total control over my legs, I do have nearly normal feeling in them, luckily this means I am unlikely to do myself serious damage.  I did have enough strength to propel myself through the house in my chair but the tremor in my left arm has made this extremely difficult.  I need assistance when outside in my chair, unless I am on my scooter!  I enjoy life outside the house, I just wish society would open it's eyes to those of us who need wheels to get about (rubbish bins are a particular annoyance!).  Following a reccommendation from my neurologist, I applied for and recently took delivery of an electric-powered wheelchair.  I am restricted to using it in the house at present and am getting used to avoiding (well, mostly) walls and doorframes.

I am lucky in that I am not on loads of different drugs.  I take one to ease the spasms in my legs and one each for the bladder and bowel ... that's all!  I've never been a big fan of taking pills, even for headaches, so it is a huge relief.  I have personally seen some benefits in alternative therapies (e.g. yoga) and treatments and would prefer to go down that road than take a huge pile of pills every day.

A lot of people have said to me, "How on earth do you cope?" (or words to that effect!) The only way, as far as I'm concerned, is to laugh at myself regularly, concentrate on the things I can do and not worry about the things I can't do. Of course I get frustrated at times and I have been known to snap at people who interfere (don't tell me you never have!) but hey, no one's perfect!!!  My view is, if I can do it, I want to do it myself and if I can't do it, I'll either try (I'm very stubborn) or I will ask for help.

My philosophy on life is:

The symptoms I have had over the past 4 years - some of which are constant, some temporary - are listed below.  They are not in any particular order, just listed as I thought of them ... hmmm, wonder what that says about my mind?

Tingling (like pins & needles) in feet, legs and hands
Paralysis
Loss of feeling
Fatigue
Bladder incontinence and urine infections
Constipation
Double vision
Loss of colour vision and partial blindness
Spasticity in legs and body (at times quite painful)
Vertigo
Tremor in left hand and arm
Loss of appetite - leading to severe weight loss
Reduced concentration and memory
Poor upper body balance

And I'm still smiling!!!! :-) I feel very lucky, find out why here.