Invenio: Coaching and Mentoring March 2016 - Page 11

Firstly what does Multiple Sclerosis even mean? Being Positive with MS? How do I do this? Is it even possible to be positive?

Let me start by explaining what MS is...

Multiple Sclerosis is a chronic, possibly a progressive disease. To a degree the body’s Immune system attacks itself, damaging the myelin sheath, which is the covering of the nerves in the brain and or spinal cord. Symptoms may include numbness, affected muscular coordination, and severe fatigue. It’s said to be incurable.

Incurable - Wow! Panic! Wheelchair! Death! My dreams are smashed! I’m a beautiful, single woman, who would want me now? These of course were my initial thoughts.

For someone that has always been fit and healthy and never needed to be admitted into hospital besides to give birth to my beautiful son; the question for me was, how do they test for this condition? The intimidating answer is an MRI scan and lumber puncture - this is a procedure doctors use to remove and test some of the spinal cord fluid, which helps them diagnose disorders of the brain and spinal cord.

Now that the condition has been diagnosed as Relapsing Remitting MS; what do I do, of course, out of panic and desperation and lack of knowledge, it would be right to listen to the neurologist and take loads of medications and eventually the MS injections which help to lengthen the relapse period.

I had many ways to handle the news; either it was to sit back and wait for the condition to take over my mind or my life or I could take the power back.

Yes, I did follow the medical route to start but a lot of what I was doing just never sat well with me, and felt deeply that there was a simple answer. That answer I found out eventually was to stop the medication and go the Naturopath / Alternative route.

Yes, a lot of people that I interact with question my decision to not do the traditional medical protocols, but I never understood why a person would do more damage to their body by injecting harmful chemicals and then take anti-inflammatories to calm the side effects.

This dis-ease has a mind of its own, from moment to moment, something is different; each person is different.

A morning can start off really positively and energetically, but after a shower, The MS Fatigue can creep in, no, fatigue is not being tired as a lot of healthy people believe. Tiredness can happen to everyone -- it is expected after certain activities or at the end of the day. A good night’s sleep can solve the problem.

Fatigue is a daily lack of energy. It can be acute (lasting a month or less) or chronic (lasting from one to six months or longer). Fatigue can prevent a person from functioning normally and affects a person's quality of life.

According to the National Multiple Sclerosis Society, 80% of people with MS have fatigue. MS-related fatigue tends to get worse as the day goes on, is often aggravated by heat and humidity, and comes on more easily and suddenly than normal fatigue.

‘Start your day early, don’t be lazy you can do it’ – is what I am normally told.

People, it’s really not about having the motivation to start the day.

The other challenge is the heat. If it is too hot, my legs, or joints do not work as I want. I always say that my legs have a mind of their own.

These are a few more symptoms that may help to dictate what is possible or not during the day:

- muscle spasms

- numbness

- balance problems and lack of coordination

- difficulty moving my legs

- unsteady gait and difficulty walking

- weakness in my legs

With my version of MS, my legs have been mostly affected, which as you know, is your way of getting around and can be debilitating.

When free movement is taken away, what do you do?

A few tips on keeping myself upbeat:-

- Meditate

- Burn incense

- Nuture myself by eating delicious, healthy food

- Speak to a friend

- Listen to ‘dance’ music & dance (sway back & forth)

I want to still be accepted as a normal person and do the normal type things like going for a picnic; climbing into the swimming pool and doing a few laps or running onto the beach and swimming in the sea; dancing the night away at a concert or walking through a shopping centre trying on clothes. Unfortunately, these type of ‘normal’ activities, are not always possible as I need to plan the trip – are there steps; can ‘Wheels’ (my bedazzled Walker on wheels) be pushed on sand or grass; how many people will be around me; is there somewhere for me to sit when I need to rest; what are the toilet facilities like, can i push ‘Wheels’ into the space, and more for consideration.

Then, what work can I do?

I have had to change my type of work that I am experienced in and re-invent myself, but the reality too is that the corporate industry doesn’t always accommodate a ‘differently disabled’ person. So trying to find work that can be done remotely / from home is not always available or possible, well in South Africa. Which made me think of people that have invisible health conditions, how do they find work too?

I wear my heart on my sleeve, but MS made me wear a mask, and hide away from the reality of the daily challenges I face, and so don’t allow people to know what really goes on. The best way I have found to deal with a lot of MS psychological issues, has now been to work with a coach who helps to put things into perspective and for me to learn how to love myself and know that I am perfect just as I am. Talking about my experience and understanding why it happened, and how I can deal with my challenges, has been so encouraging.

I have continuously been told, what an inspiration I am, but I am so unaware of the influence that I have been in people’s lives. I am grateful for being told how I have helped and believe that as harsh as this condition is, that I can help people turn their lives around too.

Life gives you both positive & negative. Focus on the good & move ahead with commitment.” – Sri Sri Ravi Shankar

Are you one of those people that say, they would rather drive to the shop which is just around the corner. My reality is – Oh my word, how I wish I could walk around the corner to the shop. Don’t procrastinate, it may be too late.

I have still fantastic dreams that right now still may seem unrealistic, but I need to keep hanging on to those dreams. They will come true; they may not be as I originally imagined, but they can and will.

What this adventure has taught me is that I have incredible willpower and strength, sometimes I don’t even know where it comes from; but when I get knocked down, I dust myself off and continue forward. As

by Debbie Adlard

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