MY MS STATUS CONVO: DON’T DIE BEFORE YOU'RE DEAD
My previous update, sent early June, had a lot of news on my issues experienced as I deteriorated somewhat and was moved from RELAPSE REMITTING M.S to
SECONDARY PROGRESSIVE M.S.
Just to recap, my right eye gives me issues when my blood pressure is high, my left leg is atrophying at a rate that I feel is alarming, my peristalsis muscles seem to regularly and inappropriately become inactive when I need to swallow foods or liquids or even breath…my vertigo is quite intense while fatigue is a daily companion of mine.
That said, I am very happy to report that the daily tablet I take now seems to have been very well accepted by my system. Nearly 7 years of daily injections and now I simply need to pop a pill daily….so awesome ! The only concern that comes with this tablet is the functioning of the liver – so I will have quarterly liver bloods tests done – first one complete and I seem to have accepted the new medication.
So let me get back to a quick monthly update :
While the real winter weather settled into the Western Cape, the dramatic drop in temperature did prove a little difficult for me.
Jackie has always battled in the winter cold – like so many who prefer warmer weather (although her 5 knee ops do not make winter any easier. I have traditionally much preferred the cooler, wet conditions but this winter has been a bit of a battle for me. Much like the heat of summer drains my energy, the cold did affect me for the first time. With our oldest, Michaela, preparing to write her matric finals In November, she has also been battling with her energy levels. Long story short here, the doc has advised that her iron levels are very low…so we are waiting for her to finish her mock finals this month before looking for the right moment to book her in for an iron infusion.
The twins have battled with much over the past few months….actually too much to put in writing and, as I would like to keep there ailments private.
All I can advise right now is that as a family, the five of us have had to manage and address regular, and at times, excruciatingly painful news – at one stage it seemed that every Monday brought a new unexpected challenge for us to rise up above and overcome.
During August, I made the call to get a weekend break with Jackie as, at one stage it really became too much – for her in particular as she manages a house with 4 autoimmune diseases, mental health concerns, eating disorders, anxiety issues and SO MUCH more.
Jackie is the most amazing wife and mother, but one wonders how much more of this she can take. That said, her faith and the respect, love and appreciation she receives from family and friends ensures she wakes up every morning ready for the days potential battles.
So, as I get back to the weekend break with my wife in early August, with bookings and dates confirmed – Jackie and I drove off to our retreat for some well needed R&R.
The following story sums up our JULY and AUGUST very well.
As we arrive at our destination, we do the cursory COVID COMPLIANCE sign in and while my temp is not high at 37 degrees Celsius, I will acknowledge that it was higher than my usual temp – always registering below 36.5.
During the day I had noted a tight chest which I thought was due to the recent windy conditions and changing of the season.
By now you can see where I am going with this…..
Jackie thought it would be best to go home immediately when my nose started running and the sneezing began.
Long story short (although it was a rather longer evening as I tried to control my temperature) we woke up bright and early – informed reception that we needed to check out early and go for a COVID TEST…good bye relaxing weekend - hello a week of living with CAPTAIN CHAOS - (aka THE CORONA PARTY POOPER ! )
While Jackies test came back negative, it was only a matter of time as she did what she could to take care of me from a distance…by the Monday she was down and out with me….
While I did battle a lot with the coughing and blocked nose – together with quite horrid shivers, Jackie suffered with the virus more than I did.
She had one particularly horrible evening in which she slept a bit next to the toilet (we are so grateful for underflooring heating….) And this, it must be noted was after both of us received the vaccination 2 weeks earlier….as both of us have comorbidities, we thank the Lord above that we got through the virus with no major concerns.
This was certainly a moment that both of us realised how many incredible friends we had as we received daily deliveries of ready cooked meals…which a month later we still haven’t actually completely got through. A special thanks to all those who sent the care packages as they did help get us through.
Moving on to the end of August, with one of my business' battling due to lockdowns, stagnated projects and my inability to operate at full strength, I knew something needed to be done. We had our own lifestyle audit focusing on the eradication of all the unnecessary expenses - REMOVING the luxuries while KEEPING the necessities…the old wants vs needs discussion.
RESULT : Goodbye DSTV and many others that were easy enough to live without but the big decision was having to sell my car and NOT replacing it. This was not as much of a sacrifice though as I really don’t drive that much anymore.
I also investigated a few of my investment policies and where I could withdraw some capital to get us through the rest of the year. This is when something of a miracle occurred…
I had a policy pay me out in full all the proceeds that were only due upon maturity in about twenty years time ! PRAISE THE LORD…as we were able to completely obliterate all debt including the bond on our beautiful house, credit cards and many others and start breathing easier again.
And now a VERY NECESSARY word of acknowledgement for my truly magnificent wife.
A person who refuses to accept any tricky situation without guidance through prayer and a strong desire to overcome any obstacle in her way.
You truly are OUR guide in difficult seas...
I am just wanting to end this update with the title of the BLOG. I saw this message on social media at probably my lowest point in August….sick in bed with COVID and knowing I needed to move fast to cut the fat on our monthly expenses.
The phrase jumped out at me like receiving a DIVINE WORD FROM ABOVE.
DON’T DIE BEFORE YOU ARE DEAD.
I understand this to literally be a call for me to completely embrace and live my life regardless of the hurdles in front of me. Simply put, I AM NOT YET DEAD…so why give up and play dead (or defeated) while I am still breathing….
TAKE CARE ALL AND KEEP LIVING !
...or as Wayne famously put it : LIVE IN THE NOW !
signed : The ADJusted Thinker...