Six months - two states, two countries, four cities, two towns: MS is the constant
My days with MS took me six months to return back to dayswithMS . It is not that I was with the attacks, laying low with everyday pain, dizziness, tingling mostly on my legs and feet and hands, some times visiting my upper back. They have been all there; I have been living with them, unsurprisingly with the regularly lengthening list of pills.
Six months took traveling between states, between countries, between cities. It took sorrow, contentment, coming to terms with the family history. Long distance drives - which I love and appreciate that despite the tricky progress with MS I can still hold onto the joys of being on the road... Long distance drives took me to cities, towns where I was/am welcome. Now, I know that I am welcome by the seasides, by the Mediterranean, by the Aegean Sea, and by the Marmara Sea.. They welcome with the healing by and of the sea. Although I am a regular MS woman with the heat and temperature when it is the point zero-sea life my pain is more bearable, my balance is better and less frequently lost - though the tingling is always there.
As I am now living in the country that I was born, on land that I never felt to belong to, but which I always felt familiar I finally returned to the neurologist with whom I have felt safest. Dr. Munire Kilinc Toprak is the neurologist who diagnosed MS despite its sneaky progress through my body; she has never left me despite my long distance travels to other cities, states and countries. She is the one who could follow up the sneaky progress after the diagnosis - so here I am with (Active) Secondary Progressive MS.
In September 2020 I had started to use Mayzent; but my neurologist at the UPMC did not want to risk the serious side effects, especially regarding heart conditions. So, under her supervision I returned back to Aubagio. Now, under the guidance of Dr. Kilinc I will be starting to use a new medicine - Cladribine - brand named Mavenclad. Of course, I need to have checks with the Pulmonary Medicine, Infectious Diseases, Internal Medicine. That would take a lot of time - for a person like me who feels it increasingly difficult to step out especially during the COVID-19 pandemic.
I have learned that RRMS and SPMS cannot be distinguished easily. The tricky part is that you do not have relapses in the SPMS, but your physical conditions worsen consistently. You lose balance - in the real sense of the term: progressively - the tingling that you are familiar with in the days with RRMS turns out to be a fact of your body. It does not stop, just changes in its extent and intensity. Fatigue has always been there, now it changes not day-by-day, but in hours throughout the day. And the tons of weight on my eyelids - especially in the mornings. Sometimes during the breakfast I feel like falling into sleep. No way, I take the challenge 💪; and continue with my delicious tea.
So, I have come up with different tactics in my everday life with MS. Linette Gray-Goodman who have been living with MS for three decades and with SPMS for two decades gives the following advice: "Stay positive and don@t let the MS be in front of anything you want to do. Because if you put it in front of you, you will not live a normal life." I doubt the idea that we can live with MS by challenging it all the time. It directly affects my bodily moves, physical capacities| the things that I can do on a daily basis depends on my mood with MS - in the case of SPMS on my hourly mood with MS. So challenging sounds too chivalry and thus, dubious to me. But to dismiss the option of challenging MS does not mean surrender. On the contrary, it points at another option out of this win-or-lose, challenge-beat-or-surrender binary: living in peace with your body; living life as it is with the joy you find, with the sorrow it brings.
I do not know how much I could conform to the techniques of this tactic but it has been helping me to come to terms with the loss of energy and speed that I used to have in my daily activities. I am learning much about my body, how my mind and emotions relate to it; how my body helps me to appreciate the experience with emotions...
More to come!
