You’ll Never Know Unless You’ve Had It Yourself – But That’s OK!

You’ll Never Know Unless You’ve Had It Yourself – But That’s OK!

I was only 20 years old when it happened – I noticed that I was dragging my right leg and it felt sort of strange and tingly, like having pins and needles. I pushed it to the back of my mind and got on with my day-to-day life, I had to. My daughter was only 2 years old and needed me to be as fit as I could possibly be to chase her around – she was certainly an active one who seldom sat still!

I carried on as best as I could until I woke one morning and couldn’t see anything – it was like looking through a thick fog and not being able to see your hand in front of you! Frightening to say the least! I had a 2-year-old needing me and I couldn’t even see her. I crawled out of bed and stumbled around trying to find the phone to desperately ring my parents for help (mobiles weren’t invented then so the only phone I had access to was stuck in another room) and as always they were wonderful and came to my rescue.

 

Over the years they have become my absolute guardian angels, always there if I need them and even always there if I don’t and I wouldn’t ever wish for it to be any other way.

To cut a long, long story short. My stay in hospital ended up with a diagnosis of Multiple Sclerosis. What was this all about? Was I going to be able to look after my child in the way I wanted to? Will I always be in pain? Was I going to die? So many questions but no-one could give me answers.

You see all those years ago Multiple Sclerosis (MS) was such an unexplained illness that no-one knew the answers to my questions. The medical profession could only give me replies of “we don’t know” or “you might or you might not” or “it’s different for each person”. This understandably made me very angry. Why didn’t they know? Who could help me now? How am I expected to cope?

Thankfully it was discovered I had the kind of MS that was called ‘Relapsing/Remitting’ which meant that I might suffer times where my nerve endings were attacked by the MS but I would recover from them to some extent and so life continued as normal for a long time with minimal symptoms which enabled me to live a near full and active life with my daughter.

I even held down a full-time job for 11 years and enjoyed the money that I earned from it. This enabled me to buy a house which has become something I will always be extremely proud of, having achieved it all through constant pain and at times crippling MS attacks.

That strange feeling in my leg became a distant memory and at times I wondered if the medical profession had got it wrong! Did I really have MS because I’ve had years of good health??

During my time of relatively good health my lovely daughter presented me with the most perfect little grandson. My life became full of pouring all my love and energy into helping her cope with him (not that it took much effort as he was, and still is, the most calm and loving child ever).

Time passed and I started to trip more, fall more and drop things a lot. I just put it down to being extremely clumsy and stubbornly ignored these annoying symptoms, I didn’t have time for this! I’d be far too busy loving my grandson and helping my daughter! I was silly really that I didn’t get these symptoms checked out because one day they certainly came back with a vengeance and a cruel reminder that YES – YOU CERTAINLY DO HAVE MS!

As happens to everyone during the night, I woke needing to go the toilet and sleepily flung myself out of bed ready to relieve myself only to collapse in a heap on my bedroom floor. My legs had totally collapsed and I had no core strength at all to be able to lift myself back up! It turns out that this had been the father of all MS attacks and ended up being the one that shapes my life to this day.

I’ve ended up with what they call ‘Drop Foot’ which means I can’t lift my right foot in order to take a step. In fact I have virtually no feeling at all in my right leg which means I drag it around like a sack of potatoes – it might as well not be part of my body at all for all the use it is! I suffer from what they call MS Fatigue which is totally different from any kind of tiredness you can imagine. It’s not normal tiredness it’s a whole body tiredness where every limb just shuts down and is saying ‘no more!’

Every day since this major attack has been an effort. Everything is an effort. Sometimes lifting my head is an effort. Life is an effort sometimes but life goes on and so these days my focus and the little strength I have is poured on what is the most important and vital to my self-esteem – MY FAMILY.

My days are busy and tiring but I love them being this way as it proves to me that I am still capable and needed.

I sit quietly during the evenings and wonder what the future holds. Will this be me for a long time? Will it all change again in the morning? How much time do I have left? No-one knows, absolutely no-one.

Do I sit and wait for the answer? Absolutely not – if no-one can answer my questions then I’m going to do one thing – get on with my life!

Daily I travel around on my mobility scooter enabling me to be independent and carry out my day-to-day jobs. Other times I drag myself around on the floor to do jobs – but I do them!

To look at me you wouldn’t know would you – I’m tired – I’m in constant pain – I’m frustrated – I’m sometimes frightened – BUT I’M HERE!

My life with MS has been hard yes, and I don’t know what it’s like without it. I’ve forgotten but the things I will never forget are the love and help I receive from my family on a daily basis.

Thank you for reading all the way to the end it means everything to me.

Julia x

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