Unspoken Conversations are the topics that are often swept under the carpet, whispered amongst the closest of friends and bitched about by many. I want to create awareness about difficult things that people face in life; grief, mental health, money, illnesses, family troubles, relationship difficulties and putting yourself first. I want to tell the truth about things that really matter.

Tuesday, 26 March 2013

What It's Like to Suffer From Multiple Sclerosis

Today I welcome Jenny to my blog. Jenny has 3 beautiful boys, grandchildren and Multiple Sclerosis. When I was at school I used to go around knocking on my neighbours doors raising money for the MS Read-a-thon so that research could be conducted into the causes, treatment and cure for Multiple Sclerosis. It's an illness very close to my heart. I think most people in Australia would've seen the tv advert with an eldery lady and a young woman sitting on the verandah of an old ranch with a walking stick in between them. People are shocked to learn that the walking stick belongs to the young woman, who suffers from MS, to be able to move around.

Hear about Jenny's story today!

Take it away Jenny.

Jenny is in the middle and the man on the left is her patient, loving and caring husband Graeme.

Hello. My name is Jenny Fisher and I have Multiple Sclerosis. I am 51, have 3 sons and 4 grandchildren.  I am wheelchair bound and have had it (diagnosed) since 1989/90. However, with hindsight I have presented with symptoms since around 1976.   I had a serious ‘episode’ in 1980, where the doctors couldn’t find anything wrong. My symptoms were extreme sensitivity and numbness to the left side of my body.   I was ’looked at’ and then sent to hospital. I celebrated my 18th birthday in hospital with doctors looking at me like I was crazy. I had one doctor tell me it was related to the severe scald scars I have on my chest, except I was scalded with hot water when I was 15 months. I personally thought I was used to them being there, but who knows I was crazy.

I met and fell madly in love with, now, husband, Graeme and have 3 amazing boys.  We have been through it together from the start, basically. So many times I went to doctors and specialists who thought I was making it up. I had one specialist tell me, to my face, ‘Some people get tired playing sport, I get tired doing normal things.’ 

Really helpful. NOT. 

I had 3 children under 4 and they kept telling me to go home and relax. YEAH RIGHT! I spent a couple of years walking around in darkness, or under a cloud, and it didn’t matter how many times I looked up or tried to get out from under it, the shadow was always above me. I seemed to cry all the time and felt like I had cotton wool in my ears, everything was muffled. I remember very little of my middle child’s early years until after he had started school.  I was sent to stay with my parents in Adelaide (We were living in Loxton) to try and get some, (I don’t remember what we were hoping to gain). My husband had the  boys on his own for about 3 months,  taking our youngest to work with him. 

Through all of this he barely held himself together, but no-one even considered him, medically.  It was very hard on him trying to keep us together as a family.

We moved to Morgan for work and I didn’t improve. I decided I needed to know if I was depressed or it was part of the MS.   I met with a Neuro-psychologist who after ‘testing’ me told me my depression had more to do with my MS not just depression. 

Most of my children’s childhood was spent in Cummins on the Eyre Peninsula.  Moving was the best thing we ever did. The house we bought was made for me and my family. We call it a ‘God thing’, because it ticked soooo many boxes for us.

My boys grew up through all this turmoil of a nutty mother, but I think it has made them better people for it. They seem more capable to sympathise with people.  I think we are certainly a closer family because of it, thanks mostly to my husband, I think.  He was the glue that kept things together.  I think we have ALL become better people because of. It. Anyone who knows our family will know we are nuts...!!!

About the Illness

Now some info on MS. It is classed as an auto immune disease. What happens is basically like an electrical short circuit, but with nerves. Something eats the myelin coating on the nerves and messages don’t get through.  The disease is best diagnosed with an MRI. It shows dead spots in the brain, a very clear indication.
One of the annoying things with the disease is it’s randomness. 

One day you’ll be walking around the next it’s gone. Then it may just come back again. No ’exercise’ helps, keeping limbs mobile is the best tactic, because tomorrow you might not be able to get out of bed. The heat affects me the most. My body basically melts and all my bones and muscles turn to jelly. Sometimes it happens while you are just standing.  It is very unpredictable.

Some people have asked if I had known before hand, would I have had children.  MS is supposedly better when your pregnant, I did not experience that. By the time No.3 arrived I could barely walk, once he was out I felt like running a marathon, well a walk around the block anyway. I believe I would have still been blessed with children whether or not the MS was there. They have been such a blessing and a help, because I had to try and pull myself together and offer some ‘normality’ for their lives.  It is very easy to slip into immobility.

Effects of MS

I can’t really say how MS has changed my life or my family’s because I have always had it so it was no real adjustment. As parts of my body gave up we just adjusted and dealt with it.   I feel it more now  I’m a grandma, because I can’t pop down to see them or run and play with them or pick them up for cuddles. Skype is a wonderful tool for keeping in contact, but nothing takes the place of touch and cuddles. The little videos from phones are wonderful because we don’t really miss out on those special times; first steps etc.


Jenny x

To learn more about the illness, visit the National MS Society website.

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