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CONTINUED...PART 5...8 YEARS ON 2014-2022

The first one I will brush over quickly as it can become embarrassing.

During 2021, I really battled with my stomach and got to the point that without warning, I needed to find a toilet very fast. When I realised the very real possibility of bowel incontinence, I went to one of our local gastroenterologists.

 

Following a barrage of colonoscopies, and gastroscopies as well as quite an exciting procedure of swallowing a camera to take pictures of my bowel, I was diagnosed in early 2022 with I.B.D. (Inflammatory Bowel Disease)

Not great, but with my sixteen year old son being diagnosed with Crohn's disease 12 months prior, I do at least have someone in the house that understands the issues associated with this condition.

 

And yes, it is easy to put this bowel issue down to the M.S. again ( although I have been advised that it could also just be a consequence of age )

 

Jax noticed this and also paid attention to issues she could identify had deteriorated with me over the previous few months. My left leg was dragging behind me more than it had in the past and while I needed nothing more than to walk with a cane when required, she (very fortunately) insisted I see a specialist podiatrist to check on my gait (one’s manner of walking)

While the neurologist had noticed in the last M.R.I. that one of the lesions on my brain were impacting my left leg, Jackie did feel strongly that I now required support for my left thigh muscles that were clearly atrophying or wasting away.

 

By March, I had a very impressive leg brace custom made and it is something I do not leave home without. It assists me when my thigh muscles are simply not in the mood for strenuous activity (like walking 😊) and the brace also supports my knee as this is the one part of my leg that ends up bearing the extra weight if my leg decided to go on strike.

The brace was gratefully received the day before the five of us went on a much-needed trip to Europe to escape the emotional and physical trauma that all of us had been through over the previous twelve to eighteen months…

 

About 4 weeks after our return to Cape Town in April, I woke up one morning with an intense knot on the left side of my neck. I immediately put it down to a bad night in which I must have slept strangely on my pillow but after three days, the spasms in my neck were followed by an intense headache which quickly turned into migraines. Fast forward another three days and I felt weird pains on my left chesf – just above my heart.

Thinking enough was enough, Jax set up an appointment with the neurologist, it was time for another chat.

 

The meeting was very quick but also very comprehensive. Jackie asked him if there were more active lesions affecting the left-hand side of my body. Yes, there were he replied, and the following points were made clear to us

  • I had indeed progressed from R.R.M.S to Secondary Progressive M.S.

  • The left-hand side of my body was under attack

  • I now had fifteen visible lesions on my brain (when first diagnosed I had only 6)

The next step to help alleviate the migraines, and the pain on my left side, I was yet again to receive a three-day I.V. cortisone infusion.

 

Now, it was time to get to the next medication and at the time of writing this update (end of July 2022) I am still awaiting news from the medical aid whether they will cover my move from AUBAGIO to the new medication, KIENDRA. For this I did require another set of bloods to check my liver function and the functioning of other organs.

 

Recently, I watched a short video once where an Olympic coach was training a young hopeful for the next games, and when she felt despondent after a really unsatisfactory training session, the coach pulled her aside before the sense of defeat sunk in and he simply advised her that to reach her goals, she must understand that she is playing a GAME OF THIRDS.

He explained that a third of the time you will feel elated and full of confidence.

A third of the time, you will feel satisfied but not overwhelmed with pride while the remaining third is when you will feel completely overwhelmed and will want to give up completely.

He continued: If you make sure you are accepting of, and grateful for the first two thirds, while acknowledging that the tough remaining third is an essential part of the journey, you will succeed in anything you set out to accomplish.

 

That is how I see this disease…. a disease of thirds.

To be quite honest, while I know there will be those patches of extreme difficulty, I am determined to make sure I maintain, appreciate, and respect the main two thirds of this ‘game.’ I am loved, I am blessed, and I am extremely grateful to be able to experience each one of my ‘thirds’ – and I urge you to celebrate them as well…regardless of which one you are in at any given time.

 

 

In closing, I thought the following verse sums up my take on where I am emotionally right now. I do feel frustrated at times, but very aware of the fact that I could be far worse off after eight years on my journey. My biggest fighter on planet earth remains my wife, while the Man above, Jesus, remains my guide and protector.

 

As my journey with M.S continues, and I have gone through the lows of relapses, I take a look at this quote and it encourages me to keep moving forward...I will always attempt to be a better person today than I was yesterday...

 

 

Take care all and thanks for taking the time to read My Story