Living with MS: How I Give Myself a Shot in the Arm
If you had to choose between giving up the ability to walk or taking medicine that resulted in a high fever or chills every 14 days what would you pick?
As an MS patient, this is my regular dilemma: In order to slow the progression of my disease and the severity of relapses, I give myself a shot every two weeks that comes with a high chance of injection site reaction (e.g. a bull’s eye like rash visible for up to six weeks), flu-like symptoms (sporadic chills, aches, and fevers up to 102 degrees) and sporadic insomnia.
I really like to walk. I enjoy my mobility and would prefer not to give it up. So, I have opted for the shot every single time.
My medication requires Goldilocks-level safe keeping. It can’t be frozen. It can’t be heated up. It must be kept cold (refrigerator like temperature), then warmed to room temperature just before use. Each month, the medication arrives carefully sandwiched in the middle of 3–4 reusable ice packs secured in a new Styrofoam cooler.
Last month, I was traveling on holiday — a trip that would have required no fewer than six transfers for medication from fridge to travel ice pack to fridge…So I took a risk and had it shipped directly to where I was staying.
The medication arrived intact. I took it, then got a fever that lasted on and off for almost three days. It was annoying, but I staved off a pity party by thinking of all of the people who had helped it arrive in the first place:
- My neurologist (for prescribing the medication)
- My mail order service (and the people who verified and approved the prescription)
- The people (biotech) who researched, created and tested my medication
- The people who packaged my medication to stay cool
- The people who shipped my medication
- The UPS Driver who delivered the medication
- The stranger who signed for the medication and who called me to let me know that it had arrived.
With friends like these — seen and unseen —and the gift of being able to continue to walk without the support of a cane or the arm of a trusted friend…what’s a little fever? Certainly, nothing I can’t live with.
This is the story I tell myself to get through my life with MS. If you are affected by MS or another chronic disease — what’s your go-to source of support and compliance aid?