Affair with my MStress

The use of an image of wires bared back at the ends is often used as a visual image to illustrate the clinical process of Multiple Sclerosis. It shows how the nerves might appear under a microscope with their damaged myelin coating. Faulty electrics can be fixed, rewired, replaced. Electricians, Engineers even DIY enthusiasts can make the necessary repair work and everything is good again. I trained as an electrical and electronic engineer and used these skills in my early career. The wires bared back image might be too simplistic, it doesn’t represent how Multiple Sclerosis manifests itself on both emotional and sensory feelings and on movement and strength.

How does it feel like to have Multiple Sclerosis?

This aims to express my feelings and share the impact of Multiple Sclerosis on my life. This is my personal account and although others may relate to some or similar issues, it must be acknowledged that my issues will not be the same for them as Multiple Sclerosis is different for everybody.

Multiple Sclerosis typically affects both men and women between the age of 20-40. In my case I was recently married with a baby boy and enjoying life with family and friends. I would consider myself fit and healthy. New career opportunities were developing. Life was good!

Last year we celebrated being married for 25 years and for most of that time I’ve been having an affair with my MStress.

Affair – a definition

‘an event or sequence of events of a specified kind’

 

Over the last 10 years in particular my psycho MStress’ strength has been influencing all aspects of my life. It’s growing inside me like the Alien in Ripley’s stomach. It can overpower me at any moment without warning.

Like many men I want to protect my home and family; be man of the house, a strong dad, DIY guy. I want to be able to play ball games with my children and pickup my grandchildren when they fall, move heavy furniture and climb up ladders and do simple home repairs. I can’t do these things now because I now lack the strength, speed and co-ordination.

My sadistic MStress has a big effect on my balance. Poor balance makes it almost impossible to lift and carry anything delicate or heavy. I never appreciated how much balance influences strength and power. As well as gravity, my MStress introduces multiple extra forces to cope with. I’m always dropping things; I just can’t be trusted carrying anything precious like your crystal glass of wine or china tea cup or even new grandson.

My MStress is like a mad Puppet MSter cutting my strings without warning. This makes my foot drop, tripping me up or I can be thrown to the floor in a heap and left me to claw my way along to reach something solid to lean on or to slump onto a chair. I can also be immobile due to stiff legs.

My Bunny Boiler MStress has forced me into drugs – my fridge is full of hypodermic syringes and I have a sharps bin in the cupboard. My first drug was a intramuscular drug, a big fat needle I had to push into my thigh muscle. It was only taken once a week but I developed a fear of this 3inch nail. To help overcome this, I tried to coincide the jab with an ‘action’ on TV like a free-kick during Match Of The Day. Sometimes this didn’t work and I’d have to ask my wife or wake one of my children asking them to “come and stab your Dad with this!” There is a lot of collaboration and great research by the global Multiple Sclerosis organisations into a possible cure and currently a number of different disease modifying drugs are available and under test. My second drug was intravenous and similar to chemotherapy treatment. It was so poisonous that as a warning it was dyed a rich blue and this made my urine the same colour for the next 12hours. These poisons made me lose all my hair – everywhere! I looked very sick but felt great for the following 12 months! The other dramatic side effect of this drug and hair loss I still have is feeling cold most of the time. I now have another hypodermic drug. These pin-like needles are not so scary. I use this every other day subcutaneously in my legs, stomach or arms.

My MStress controls the clothes I wear. For comfort, for ease getting on and off and because I love them, I wear retro style trainers as much as possible. Without warning my wicked MStress makes them feel like cheap football boots two sizes too tight, which crush my toes. These boots have metal studs breaking through the soles stabbing my feet with every step. The studs can make every surface feel like ice.

Frequency, Hesitancy, Urgency – Well there’s a contradiction in terms but terms given to my bladder. My MStress must have a sick sense of humour – I’ll be the one stood up at a public toilet urinal waiting and waiting and waiting. Other men will come in and go and I would still be stood there. Eventually I decide that nothing is going to happen and so I’ll zip-up, wash my hands and leave. I wobble my way back to where I was originally but then have to turn back and return as quickly as possible to the toilet. At other times I could be standing cross-legged with my hand creating some pressure desperate to get to a loo only to find there it has always got someone else in.

My evil MStress can try to influence where I go and when I go and this has had an impact on my career and money. I have been fortunate to work with some amazing teams, travel to some amazing places and meet some amazing people. Multiple Sclerosis forced a change in career direction and in many ways has made me a better, more accomplished person. I have been able to use both my engineering and commercial skills and maintain contact with and create many new national and international business contacts. I have also developed many new skills too. Multiple Sclerosis has also created a deep appreciation of life living with a disability. Through our Triple Tread® project I have been able to meet some extraordinary people and connect with some amazing organisations.

So what does the future hold for me and my MStress? More wobbling, more bouncing off walls, more falls and more drugs for certain but also more opportunities. I believe my future includes support for others coming to terms with Multiple Sclerosis and the issues their MStress or MSter throws at them. I am particularly keen to support those who are newly diagnosed.

Championing sport and fitness is of particular interest. I will continue to use my skills and knowledge to create cool, attractive and functional solutions to improve confidence, self-esteem, health and wellness. Exercise is important for everyone but disabilities throw additional challenges including those of balance, pain, fatigue and spasticity.

I am fortunate and thankful for the love of my wife and sense of humour we share that gets us through each day. I am grateful for the support of my family and friends. I know they will help me in my continued battle with my MStress and together we look forward to new challenges ahead.

 

www.tripletread.com

www.mphsupport.com

 

 

 

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Experiences with Disease Modifying Drugs

My first exposure to MS was about 20 years ago.  I worked with a man who had a limp, walked with a stick and was the only one who had a company car with automatic transmission.  I was told discreetly by someone else that he had something called Multiple Sclerosis, I had never heard of it but was told he never spoke about ‘his problem’ so I didn’t ask or learn anymore.

Over the next 10 years I had a number of strange problems such as pins and needles, numbness, muscle spasms, poor balance, clumsiness and co-ordination, headaches, joint and muscle pain, tiredness and motion sickness, all of which I found hard to justify and ‘label’.

I was finally diagnosed with RRMS in 2004 when driving became very difficult and walking uncomfortable due to the sensation of wearing wet and crumpled up socks filled with sharp stones; even when I was in my bare feet!  During the next 2 years I was given two or three Steroid injections to help with a number of relapses.  In 2007 I changed jobs and although the law protects against any medical discrimination, I did not feel secure making everyone aware of MS until I had completed my first year of employment.  I avoided too many questions and any concerns about my limp, I tried to pass off as an old injury or simply as a bad leg.  I wanted to be recognised at my new work for my skill and success and not to be labelled as the one with MS.

At this time I was also recommended for disease modifying drugs.  I chose to take Avonex as this meant less injections than the other options, only once per week, it would also mean I would not have to travel with injections or worry about maintaining its correct temperature.  I injected the Avonex into my thigh muscle.  After 12 months on Avonex, I was still suffering from relapses, my symptoms were getting more severe.  After discussing with my MS consultant I was taken off Avonex and offered a treatment course of Mitoxanthrane.  This is administered intravenously and in my case should be followed by Copaxone injections.  I noticed an immediate and dramatic improvement on all my sensory and mobility problems directly following my initial Mitoxanthrane treatment.  But I also experienced a severe side effect; complete and total hair loss!

I felt great but looked terrible!

I had still worked less than one year at this new company and had intended to maintain a level of secrecy about my condition but now it was clear there was something wrong.  I was due to take part in a major international tradeshow in Amsterdam and would see very many contacts that would be bound to ask questions.  I decided to use this tradeshow as an opportunity to raise awareness and funds for MS.  I was confident I could collect a number of sponsor names but as I only saw many of these people at trade shows, it would have been difficult to make them aware that I had completed the task and to collect their funds.  At this stage I was completely bald, my plan was to have a Sponsored retrospective Head Shave.

I have now been self injecting Copaxone, daily for over four years.  This is done using a pen-like applicator.  Most of my hair has slowly returned but unfortunately many of my MS symptons have slowly returned too.  I understand how to manage my problems more and try to be positive.  I walk very short disctances with a stick and have a car with automatic transmission. I am now happy to talk about the disease and try to increase awareness.  I’m thankful for the support from my family and friends and the relief that the various drugs and treatments have provided but look forward to a better more permanent solution and for a faster more effective diagnosis method for others.

To everyone affected by MS – Be positive and good luck!

http://www.mphsupport.com