- Posted August 13, 2012 by
This iReport is part of an assignment:
Living with MS
Life full of questions...
What do I eat? how long can I work? how long can I walk? should I stay with my girlfriend? how is this going to impact my family? are my friends going to stay my friends? is this pain in my side MS? Is this pain in my neck MS? why does my knee feel weird? Why does my arm feel weird? Am I seeing spots? Is this all in my head?... does this make me inferior?
Many questions pop into your head after being diagnosed. You want to believe it is going to be okay, but depending on the bedside manner of the neurologist delivering the information (mine was poor), you may have feelings of despair from the second you are delivered the news.
I was diagnosed with Multiple Sclerosis a few months ago, at 25, more than 6 years after what was at the latest my first attack (that I didn't know was one). I have learned that I have numerous scars on my brain and spinal cord (Multiple Scars).
All I want is to build a career, a family, workout, and golf. Pretty normal for an active and ambitious 25 year old. But I find myself attempting to plan for the future and ask questions. I find myself injecting my leg with medication I know little of, and asking questions on a daily basis. With Multiple Sclerosis there are a lot of questions and not too many answers. Just maybes... I'm a business minded guy, numbers oriented, and no one likes maybes these days outside of Carly Rae Jepsen.
If you're newly diagnosed get used to maybes quick. Grieve a LITTLE, and enjoy what you still can a lot. I am in business school at a top 25 school in America, I have the greatest support system in the world in my family and girlfriend, good friends, and I have lived a pretty amazing life!!! BUT, I still feel alone at times and scared a lot. I have not informed most of my friends, colleagues or family - I live in secrecy. Which is something we all will for many years. Scared that the conceptions of this could impact your livelihood, or even worse, that MS could.
I have yet to have a day I don't think about it, at least to some degree. I go golfing, which has always been a cherished past-time(and still is), but it is a bit disheartening for me to see the groups of elderly men golfing with friends and doubt that I could do that. I'm scared of needing assisted care one day, and so is my girlfriend. We both don't know if we can stay together, although we plan to (I think I wonder more about this more than her - for her sake).
I have a hard time forgiving myself. I just feel guilty for this because it is negatively affecting the people i love the most. This has probably been my biggest struggle... which leads me to my tips of advice (helpful to non-MSers too):
1. Forgive yourself: You didn't do this or choose this!
2. Love others! Love yourself! Love Life!
3. Eat Healthy (even if your neurologist says you don't need to). The studies are inconclusive, but many believe nutrition has a direct impact. PLEASE READ ABOUT
TERRY WAHL'S (this will at least give you some hope).
4. Workout.. A LOT... NO MATTER WHAT!!
5. Research, Research, Research. Learn, so you're prepared.
6. Stop researching, enjoy life, don't make this your life (which can be hard to do)
7. Tell those you care about how important they are and that you appreciate them
8. TAKE YOUR MEDICATIONS.. and get screened to make sure they're working
9. and Finally... DO NOT, I repeat, DO NOT GIVE UP HOPE!!!
There is a lot of great information, research, and medication on the way. Stem Cell may be the game changer, but there are many other things in the works that may be as well. Animal testing has shown some great results, and this will hopefully transfer over to humans in the years to come. Oh, and get 10. GET A GOOD NEUROLOGIST. There is a big difference on this, I would advice a MULTIPLE SCLEROSIS SPECIALIST if you can. They know more about the medications and options. And I have to add one more.. 11. Connect with others that are positive and with good information (Try Twitter, read books, Facebook (look up athletes with MS for one)).
MS can be lonely, but many live a fulfilled life for years. You can still have fun and live. More than likely, you can still do the things you want. I am still perfectly fine beyond a few weird numbness and little loss of strength (which I lift frequently to overcome). I also wonder of some other symptoms and bit of brain fog. I recently completed a rigorous ropes course in which many healthy non-MSers could not. For anyone reading this... My hope is that you live with hope, act brave in the face of fear.