It has been a rough eight months and it's effects are very telling on my poor MS body. Since the beginning of the school year, nothing seems to have fallen into place for my son's senior year. He started it off by having his wisdom teeth extracted and subsequently spending a week at home recovering. Next came a sinus infection that left him drained. He had Mono last year and the immune system is still trying to catch up.
By now it is the end of October and we're counting down the days until Thanksgiving break and BANG! The unbelievable happens. Miller Fisher Syndrome ( a rare form of Guillain-Barré syndromehttps://www.ninds.nih.gov/Disorders/Patient.../Guillain-Barré-Syndrome-Fact-Sheet) attacks out of no where and school takes a back seat for TWO MONTHS. We spent a week in hospital undergoing many ridiculously painful tests and procedures before returning home for him to be home schooled until the New Year. In between all this mess, several disappointing events occur that will likely affect his college plans. Some of this is still rather raw and I don't want to talk about it right now. Needless-to-say, it will all work out. It has to.
But, my son's future educational agenda is not the topic today. It plays a huge part in my purpose, though.
As a MS Warrior, I am all too much aware of the result of stress on a person's stamina, and unfortunately what my child experiences triples for the Mom who is doing her best to hold it all together and allow this time in history to be all about HIM. Because it is. He is the reason I am still breathing.
It has taken me a long time to realize that I cannot be here for my son if I'm not taking care of myself. Did you catch that little innuendo? Before I can be the best me for my son, I have to be the best me for ME. Doctors aren't gong to do that for me. I'm on my own here, constantly hitting the websites, online resources, support group news...anything I can find to strengthen that arsenal of knowledge that we should all be encouraged to collect.
When you were diagnosed, did anyone tell you how time-consuming MS would be?
Well, I'm telling you now. If you want to be more pro-active about your disease, you need to get out of your comfort one, bite the bullet, and research. Let me help as much as I can.
Look for support groups. There are plenty out there. There is a wealth of groups on Face Book. Any MS organization can head you in the right direction. You can even train to be a group leader through NMSS. I did and actually organized a little group a few years ago, but it fell through. I guess I'm not much of a facilitator.
Practice physical therapy of some kind. You don't need to pay big bucks, but if you a re fortunate enough to have a neurologist as compassionate as mine, maybe you can score a medical prescription. Attend the prescribed amount of visits to understand the techniques and exercises required to strengthen yourself physically and practice them at home. DO NOT take it upon yourself to assume the role of self-medicater though, and run the risk of injury. The goal here is to move and to keep moving.
There is so much information out there that Warriors are not privy to upon diagnosis. I believe we should be handed a complete guide to living with MS when we are diagnosed. A list of current resources and reading material, available pharmaceuticals, alternative treatments...the whole gambit. I'm not promoting sales for anything, but Multiple Sclerosis for Dummies has been my MS bible from day one. It doesn't tell you everything, but it certainly covers a range of information.
Have you ever heard of the Expanded Disability Status Scale (EDSS)? If you have, you are one up on me. I wasn't aware of the thing, but it certainly makes sense that there is a serviceable device to evaluate the gravity of the MonSter. It just kind of ticks me off that this is yet another hidden resource not shared by physicians. MS is ridiculous enough. We shouldn't be left in the dark.
As it stands, not much information is awarded the newly diagnosed. Because it is ingrained in me to learn new stuff as often as possible, I am agreeable to doing a little research. BUT not everyone is so inclined.
No one should need to do extensive research to learn about the life sentence given on Diagnosis Day. This disease is devastating enough without being told that any further information must be discovered individually.
Are we not important enough to be privy to any and all current news about the one thing that is never going to leave us? I suppose the powers that be assume that we have all the time in the world to learn more about what they already know. If I had wanted a job as a medical professional I would have taken that route of study forty years ago.
Sorry. Rant over.
Let's talk about Extended Disability Status Scale (EDSS). I knew there definitely had to be some type of rating device to evaluate our overall physical abilities and am glad I found one. I think. I took the little survey and was not pleased but also not surprised. My score is 6.5. For my straight A mindset, this is not acceptable on a normal grading scale (The school teacher mentality never goes away...Just like MS:).
I grieved for a few minutes after achieving this score. then I realized that I am a woman who lives for purpose. I told Rebecca (Remember my PT?) that once I reach the goals she has set for me I would purchase a prize for myself: a pretty pink fitness tracker.
So, 6.5 be damned! Of course this reward depends upon my reaction to the challenge. Do I really want to win the prize? Am I motivated to work toward this goal? Will I continue to utilize the fitness tracker once PT is finished?
That 6.5 score may not change, but at least I will stil be working toward a better ME for my son.
I don't claim to know it all. Not by a stretch, but I will continue to do the research and make suggestions. Help me help us by doing the same. MS Warriors need one another.
That's all I've got for today. Have a great weekend!
Lisa, The Lady with the Cane
MY EDSS assessment