Living Well with Multiple Sclerosis

Judith (in her late 50s) describes how she was diagnosed with Multiple Sclerosis (MS) in her 40s , what impact it has had on her and how she continues to live life to the full.  

Multiple sclerosis (MS) is a condition that affects your brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged, and this causes a range of symptoms.  Once diagnosed, MS stays with you for life, but treatments and specialists can help you to manage the condition and its symptoms.

More than 100,000 people in the UK have MS. People are most likely to be diagnosed with MS in their 40s and 50s. But many people notice their first symptoms years before they get their diagnosis. MS affects almost three times as many women as men.

MS Society https://www.mssociety.org.uk/about-ms/what-is-ms

I first noticed a strange feeling in my legs in 2005.  It was very minor and didn’t stop me walking or getting on with my busy life.  A friend suggested I should get it checked out and I saw my GP who immediately referred me to the emergency neurology department at my local hospital.

The neurologist I saw said ‘it’s most probably one of four things: a brain tumor; MS; Parkinson’s Disease; or related to your migraines.  Which immediately caused me to ponder which one of these do I want – or least not want?!  I was given some medication which completely stopped the symptoms, which helped me not to think too much about it while they did some further tests.

After a number of tests my diagnosis remained unconfirmed but the consultant felt it was most likely to be MS because they could see some myelin damage. I stopped taking the medication given to me after about three months and didn’t have any further symptoms for about a year.  When the symptoms returned the consultant was able to confirm the MS diagnosis because I had now had had more than one episode (hence “multiple” sclerosis). However I didn’t go take the medication again, and in fact for 10 years I lived normally - working, going on holiday, walking a lot, and seeing an MS nurse once a year, who checked how I was getting on.

Then in 2016 I was on holiday in San Francisco and had gone for a long walk. That evening I found I could hardly move.  The next day I rested and took things a bit easier for the remainder of the holiday.  Then back home I was finding it harder to walk at my usual pace for more than about 10 minutes, and had a couple of falls – which injured other parts of me (spraining my foot for example) and I started to use a stick (something I had not felt I needed, or contemplated before this).  Once I recovered from the falls I was able to stop using the stick for a while (for over a year) but started again when I had a longer journey to work – I realised it really made a difference to my confidence and speed of walking, and was less tiring for me.

My husband is extremely supportive and I take his help when offered!  I also accept that I might need to use aids, such as the walking stick from time to time – in fact I now have three in different colours!

Whilst the MS seems to have got a little worse in the last couple of years the doctors do not think it is progressive (meaning getting worse all the time) – although I am aware that can happen.  They describe it as relapsing/remitting – so it comes and goes.  To date I have not sought or needed to take medication so have been very lucky in that regard.  This is a personal decision and others might choose a different course.  My own view is that I prefer not to be on medication for as long as possible because it can have unwanted side-effects.  I do try to keep reasonably healthy generally though.

Whilst I don’t walk as much as I used to, I still do walk - and swim twice a week.  I eat a balanced diet and recently have been following the 5:2 programme which allows me to eat what I like on five days of the week and fast the other two.  It works for me because it keeps my weight under control, and I love good food!

I do now notice how some environments are more difficult than they might be.  For example cinemas with steps and ramps - if there is no hand-rail this can be difficult for someone with poor balance to get to the seats.  So you do become more conscious of obstacles in the environment and sometimes more reliant on your partner/companion for support.

Right from my original diagnosis I was determined not to be defined by my diagnosis. In fact because I had very little in the way of symptoms in the first 10 years, I really did not feel like I had a long term condition.  

People sometimes ask me what advice I would give to others if they found themselves in the same situation.  I find this difficult to answer.  I think you have to find your own way, mine was definitely ‘just get on with your life and do as much as you can while you can’.    I am very aware that even though I am now more conscious of having a disability, and it does affect my life in different ways – I am also incredibly lucky – many have to deal with challenges that are much worse.