When I initially started this series, I didn't know how this whole Covid19 scenario would pan out locally. I almost shelved it, because at the time, cases were almost down to nothing. However, here we are 4 months later with hundreds of active cases and a few more deaths. The feeling is unsettling honestly. I have an entire protocol that I follow when I need to leave the house. Truthfully, I'm becoming more and more paranoid about being exposed to the virus, so if I'm paranoid, what about my friends who are immunocompromised. Then I remembered my schoolmate Kamah.
What is your autoimmune disorder and how long have you been living with it?
I have been living with Multiple Sclerosis for the past 18 years. It began at the age of 17 but I was not diagnosed till after I turned 18.
Multiple sclerosis (MS) is a progressive, immune-mediated disorder. That means the system designed to keep your body healthy mistakenly attacks parts of your body that are vital to everyday function. The protective coverings of nerve cells are damaged, which leads to diminished function in the brain and spinal cord. The brain and spinal cords control every function of the body so when they are damaged it causes symptoms that include paralysis, blindness, numbness, tingling in arms and legs, nerve pain and many others.
*I remember we were in form 6 when her battle with MS began, I'd found out from another classmate and I was shook, she was so young, how could this happen?*
What type of medication/treatment do you have to take and how often?
There is no cure for MS but there are different drugs available to delay the course of the disease or help with managing your symptoms. At my time of diagnosis there was one drug being introduced to Trinidad but the side effects were many so I made the decision to try alternative therapies. With the help of many doctors over the years I have been able to develop a plan of treatment that has had great results on my condition. It is mainly made up of vitamin therapy and a change of my lifestyle and diet.
What's the hardest part about living with your disorder? Can you recall the worst experience that you've had?
The most difficult part about living with MS is the unpredictability of the disease. I can be doing well and living life to the fullest and then out of nowhere I would have an attack. An attack can be as mild as fatigue to as extreme as not being able to move parts of my body or loss of my vision. These attacks would usually trigger my depression and then I start worrying about my future. There is no guarantee that I would recover from an attack and the older I get the more I see my symptoms progressing, but thankfully the progress is very slow.
The worst experience I have ever had though would have to be the attack I had about 8 months after I got married. It started off as a simple bladder infection that I would get from time to time (MS affects your bladder as well) A trip to the doctor got me the usual antibiotics to treat it, but this time it was not normal recovery. It reoccurred a few days after the antibiotics finished so I got another course. I took a total of 3 different courses of antibiotics, ran test on my bladder and tried different doctors. There was nothing physically wrong with me that was causing the infections, it was just a result of my bladder not doing its job properly. I suspect damaged nerve cells played a part. This wasn’t the end though as the constant antibiotics ended up weakening my body so much that it triggered some major MS flare ups. I was extremely fatigued, my vision was totally blurred in both eyes and that caused major headaches. It completely derailed my life as I could not function normally and had to withdraw from most of my regular activities. This episode lasted for months but I eventually got over it and even figured out how to handle my bladder issues so that I would not have to take antibiotics.
Being immunocompromised and knowing that you may not be able to fight off the virus if your get it, how worried are you about contracting Covid-19?
I have no idea how my body would react to Covid -19 but I am terrified of having to deal with it. I have fought for 18 years to create a life for myself that I enjoy and love, despite living with MS. I have a 3 year old son and 6 year old daughter that are my reason to fight every day for my existence, so now I have to take every precaution I can to ensure that we are safe. In the past month I have probably left the house about 3 times. It is wreaking havoc on my depression and I am on constant medication to control my anxiety. The constant state of being stressed out is bringing on flare ups of my MS. What makes things even more difficult is the fact that MS and depression are invisible illnesses so I look completely normal, no one understands the war that is raging in my mind and body.
In closing I would like to say to everyone, think about those around you. Even if you do not agree with the advice being given, what you must understand is that this situation is evolving and no one knows any better, so our best response is to listen to the authorities. The simplest way we know to stop the virus is to stay home and keep our families safe.
~~~~~~~
What many people don't realise, is that amongst us, there are those who are fighting battles that we cannot even begin to understand. I can't fathom how she balances being a wife, mother and a business professional while living with MS. I can only empathise, lend an ear whenever she needs it, or lift her up in prayer. She recently started a Facebook page called Kav..this is your life where she chronicles her struggles and victories in her MS journey. I highly suggest that you go check it out.
Again, I implore, stay home! Leave only if you need to! Wear your mask! Sanitise! Keep yuh distance! I cannot understand why so many of us are so hell bent against doing what we need to do to prevent the spread. The government can only do so much. We must have some personal responsibility, if not for ourselves, but for our loved ones, and for the common good of all.
Stay home and stay safe guys,
Regards,
Tshenelle aka Nelly B.
0 comments
Share your thoughts!!