I can honestly say that for the first 6 years…. until the dreaded pandemic hit the globe in 2020, the main issue for me became the CHRONIC and never-ending fatigue, as well as times of short term memory loss, vertigo, and my inability to walk in a straight line.
I also have problems with lifting things with my left hand. The tremors or shakes can be amusing but when you start dropping things, it does get frustrating. I do also battle with my swallowing - I can choke on small tablets as my peristalsis (swallowing) muscles have also been affected.
Then, I should also add that my tolerance levels have definitely shortened. So much so that I remember Jackie having a very stern chat to me when I snapped at her for no apparent reason. Now I am aware that after being married for over 20 years will bring a few disagreements over time but I will admit that looking back, I was not myself. Once we identified and I acknowledged this as part of the disease, I was prescribed Nuzak (a generic of Prozac). Jax says this was a game changer.
My fatigue issues did not start from the beginning. Over the years, I slowly got increasingly tired after doing the most simple and mundane things…. until it got to the stage where, quite truthfully, getting up to take a shower and get ready for the day became very taxing and often I ended up back in bed.
In about 2017, I went back to my neurologist and asked him for help to get over this debilitating fatigue. His answer was quite simple – He provided me with a script for PROVIGIL (in the US it is known as MODAFINIL)
To say that it was potentially life changing was no exaggeration as I could focus on daily tasks much better and not worry about the physical exhaustion felt after doing basic things such as driving to the mall!
Once I researched what PROVIGIL was, I came across a remarkably interesting fact. If you have ever watched the movie (and a series on TV) called LIMITLESS…. you will understand why this drug was so great for me.
The movie is obviously over the top and fantasised, but the point is that Provigil was impressive for me until there was a major outcry in the world over how accessible it was to anyone. The bottom line is that it was withdrawn from the South African market in around 2018 and it only became available again in late 2019…
While it was not available, I was prescribed Neucon - otherwise known as RITALIN
As it stands, I can get myself from 8am till around 2pm on the Ritalin before there is an overwhelming wave of fatigue that hits me. I am very grateful as there were times that I could not get to lunch without having to sleep.
Now we need to move forward in time a bit.
When September 2019 arrived, the time was right for me to resign completely from the family business that I grew with my father when I joined in the year 2000. With complete confidence in the ability of my younger sister to lead the company, I bowed out with a heavy heart but with complete pride.
In the months before resigning I registered a new company, ORIGIN8 Décor design. While I knew it would be more of a niche operation, it has never and will never become something difficult to manage. So, feeling both confident and excited, Jackie and I began a new chapter in our lives as budding entrepreneurs….
ALONG COME COVID….and with it – uncertain and confusing times for all….and ORIGIN8 was not spared in this pandemic.
Because the company had only just started to find its feet, after having received encouraging and very welcoming feedback from the market, we were set to pick up lucrative contracts from Dubai to Mauritius. But with the rug being pulled from under us in March 2020, I quickly sensed that I would be unable to pull a salary from the company from April 2020 and will ever be grateful for the option of putting in a claim with a disability cover policy I had.
The truth is that by April 2020, not only were we in complete lockdown and unable to earn a living, both Jackie and I sensed that things were not all right with me and as soon as I was allowed to, I went for my annual M.R.I. to make sure that things had not deteriorated for me.
While being an eternal optimist, I was sure that the medication I had been on for almost six years was still maintaining my condition and ensuring that I had not deteriorated.
Unfortunately, this was not the case.
The M.R.I. revealed another seven lesions on my brain – taking the total to thirteen visible lesions visible – with half of them active and concerning. The doc said very diplomatically that it was time to treat the disease with a more aggressive medication. He suggested a bi-monthly injection called PLEGRIDY.
Having injected daily for so long, the thought of only having to administer two injections per month sounded exciting. But I could not have been more wrong…
With excitement, I applied my first injection and within 24 hours, the side effects, although expected, were intense and a bit of a concern. I took a week to regain the much-needed energy to be able to function at all. I spent the better half of a week in bed, unable to do anything – I really had no desire to do anything but sleep!
The second week was better as I started to regain parts of myself, I felt I had lost for a week.
BUT the second week was quickly over, and it was time for the next injection….
For 2 months, this cycle repeated itself after every injection. By the fourth injection, Jax contacted the neurologist to report that we were not extremely happy with PLEGRIDY.
Yet another appointment with him and he proposed I continue with the Plegridy as he got hold of our medical aid to ask them to cover what he termed: the ‘’Rolls Royce’’ of M.S. treatments = a monthly infusion of TYSABRI.
One month later, we were advised by the medical aid that they would not cover this treatment as my M.S. status had not moved from R.R.M.S (level 1) to Secondary Progressive M.S. (level 2).
Disappointed but not without options, I was put onto a daily medication called AUBAGIO.
While we waited for the paperwork to go through and for the AUBAGIO to arrive, I had 3 days of visits by a medical nurse to administer a cortisone drip. After these infusions, I did feel ‘zonked’ but it did do me the world of good.
From early 2021 till June 2022, I have really enjoyed the daily Aubagio tablet.
Yes, I had managed to get away from self-administered injections for over six years and now only need to take one tablet daily.
Aubagio has really been wonderful for me and the one enormous difference I have most enjoyed, is the fact that, while still battling with fatigue daily, this daily tablet somehow gave me an extra two hours of functioning before I felt a strong need to get into bed.
At one point early on after my diagnosis, I could not get through the day without a regular sleep around lunchtime. On Aubagio, I have felt the pull towards my bed only around 2pm every day and instead of sleeping for ninety solid minutes, all I have required was a 60-minute period to let my body rest – only occasionally needing to fall asleep. We celebrate small victories…and this was certainly a victory.
2021, and being on my new medication, my health seemed to stablise. We, as a family had a very challenging period from mid-2021 till Jan 2022 which I will hopefully be able to elaborate more on in the future, but it was certainly a time for me to really look at my M.S. from a distance – knowing that each one of my family were facing their own individual challenges – challenges that both Jax and I as loving and caring parents were grateful to be able to have a hands on approach with. We could not allow either of our kids to face the many obstacles that were lined up in front of them without our support. Jackie also had her own physical battles to fight, and again I was happy to be able to not give my M.S. any more airtime than it required as I put all my energy into her wellbeing.
Come January 2022, when most of these obstacles that Jackie, Michaela, Tayden, and Loren had overcome, it was as if my M.S. felt It needed some attention.