Living with MS - Lara's Story
I was diagnosed with Multiple Sclerosis in December 2014 at the age of 28. MS is known as the snowflake disease, as it presents differently for each person, and it can masquerade as a number of different health problems, as it had for many years prior to my diagnosis.
While living with MS, I have experienced extreme parasthesia, numbness, and tingling, lhermitte’s sign, MS hug, chronic fatigue, brain fog, speech & swallowing problems, bladder frequency and urgency, sexual dysfunction, pain, migraine, weight loss, weakness, leg drag, tremor, spasticity, balance and vertigo issues, severe depression, and heat intolerance.
At diagnosis I was studying full-time, working two jobs, and gigging as a singer occasionally. I went from living a very full life to being bed ridden four to five days a week.
The first treatment I chose to pursue didn’t work. I was very debilitated, continuing to have constant disease progression and back-to-back relapses. I eventually found a treatment that worked for me, and in combination with a balanced and altered lifestyle, and a holistic approach to the mind-body connection, I have been able to live relapse free for several years now.
Having been a very active and athletic person my whole life, and being a performer (singer), losing the ability to par-ticipate in both exercise and gigs was a very difficult pill to swallow and adapt to. Having the additional element of heat intolerance added to the mix, for the days when my body felt capable of exercise, made the window for fitness even narrower.
People with MS can have a hotter core temperature than people without MS, and due to nerve damage of the myelin sheath and/or lesion location, regulating temperature can be difficult or not possible, which means once overheated, it is very difficult to cool down.
As a result, an MS body can experience an exacerbation of symptoms which might mimic a relapse. For me personally, I have had attacks of fainting, dizziness, ticks and tremors, profuse sweating, weakness (to the point where my legs no longer work), numbness, fatigue, and brain fog all induced by the heat. I recognise that being outdoors in the Australian summer, let alone exercising, is something I need to be extremely cautious of, plan around, or avoid all together.
This, of course, can have detrimental effects on both the mind and body. After all, movement is medicine, and for me personally, learning yoga, starting to exercise again and rehabilitating my physicality and strength has had a profound effect on both my mental and physical wellbeing.
The use of neck coolers has had an extensive positive effect on my heat intolerance, and has broadened my options during summer, exercise (even during winter), and performing. I have also found them effective for pain reduction during headaches and migraines.
While I still live with daily symptoms (attributes of my baseline), and still have fluctuations and flares, implementation of methods like the use of neck coolers help manage my disease and enable a higher quality of life.