Disease Modifying Therapy (DMT) is “NOT” a cure. Actually it is a treatment. Some of them are better than others, but “YOU” decide what measuring stick “YOU” are going to use and then decide which is good for “YOU”. There are several ways to take them and again it is your choice. There are lots of choices in this disease, get used to it and start making choices that suit “YOU”. Do not just let some Neuro, (neurologist) family member decide what “YOU” will take. It is your body and your condition. In twenty years time they will be comfortably retired and “YOU” will still be living your ms life. Make decisions that suit “YOU” and not somebody else. There is loneliness and heartbreak in this illness, not everybody around us is able to handle it. We all have the illness, we have no choice but “WE” all can handle it. At times it is scary frustrating humiliating, but that is the lot of a person with a chronic progressive disabling disease.
Yes, there are certainly many negative things, but there are positives, actually very positive. I would never have met she who must be obeyed, I would never have not rekindled my closeness with my mother if I had not gotten sick. I would not have found out that I can mostly cope with injections, I would have not known that I can walk out of a pizza bar in only my underwear (protective of course). I would never have known any of these things. I actually learned that it is really possible to be heterosexual and close friends with a woman. Tell me that in my early twenties and I would have just laughed at “YOU”. Do “YOU” see feel understand, there is so much more to this illness than disability?
“YOU” can achieve, “YOU” can still have hopes and dreams. Do not let this condition shut “YOU” away hold “YOU” back. There is so much that “YOU” can achieve, “YOU” just have to open your eyes look around then make a decision and follow through with it, to the best of your ability. Of course if plan A does not work out move on to plan B C…..Q. I have taken three different medicines and had plans to many to count but I have always kept myself moving. Forever forward to the next adventure, never sitting in a dark corner crying pitying myself and my lot in life. I believe I may have chosen this for a purpose, I am not sure what, or that I am doing the right thing. I do not believe that I am just here to suffer and use resources. No, I like “YOU” have a purpose whatever that might be, maybe just to bring a smile to somebodies face on a dark stormy night. I am good with that.
Royce
Take your medicine and live your ms life
Written by
RoyceNewton
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Royce you are right. A "Cure" means different things to different people; but your post realizes this. A DMT has specific positives that an individual has to accept as a limited "Cure" for some limited aspects of MS.
OMG...just started reading your "statements" or "Blogs"...things you are writing (the correct word is not coming "out"....typical). You write VERY well! I was diagnosed in 2011 with MS. I was a teacher for 24 years and had to retire early in 2016 mainly b/c of cognitive issues. The past 3 years (June 2016 - April 2019) were "hell" for me. Besides having the disability lawyer from Hades who held onto my case for as long as he could (I guess the longer it takes, the more money) and did not follow up with what he said he would do to help me receive disability quicker (l had THREE opportunities to receive it earlier and he prevented that!) but during those 3 years I "lost friends" in that people that I thought were friends "disappeared". People that I was ALWAYS there for were no longer around (and I am not the type to "burden" people with my issues). I was not being taken seriously by some - non-doctors AND doctors alike!). I do not "look" sick. That was an issue. Other negative things were happening as well during those 3 years - but again, the greatest was that I felt totally alone. Where were my so-called "friends"?
Well, the following is my advice that can help bring about positives and get rid of (or at least lower) the negatives that one might face with this disease: One...you only need a few friends. In fact most people are not our friends but merely acquaintances and that is okay! As long as they are there for you and make you feel good, then keep them! But understand (and I personally did have issues with this belief at first - but not anymore) that their "disappearance" is NOT YOU. Many people have a hard time and do not know how to approach or "deal" with someone who is ill. But, that is THEIR problem and not yours. So, you cherish what you learned having them in your life and the good times that you had with them - then you move on. You will meet others and establish new relationships on this journey. I did! I did meet others like me (and not like me) and established new relationships with people who understand what I am going through or tries to understand if they do not have MS (when one door opens...).
Two...yes, you WILL feel depressed and lonely at times and that is normal and you are NOT crazy. You are strong - Made Strong - and it is okay to be weak at times, but then it is important to pick yourself up and move on!
Three...it is important to be busy with a hobby or and be surrounded by things (and people) that you enjoy. Take the toxic out of your life! If it is a "friend" that is making you feel bad about yourself then stop being friends with them! They are toxic to you and you cannot have "toxic" in your life b/c stress and toxic bring about more flare-ups. Although I did lose "friends", I did drop 1 "friendship" on my own b/c that person was very toxic to/for me and did attempt to take advantage of my "weakness" during those 3 years. Life without that person in my life is SO much better!
Four...YES, you can still do what you enjoy - but maybe you have to TWEAK it! You might have to cut back on the amount of time that you spend on what you enjoy doing due to exhaustion or flare-ups - just make sure that you LISTEN TO YOUR BODY!!!! I live in Florida and the heat really bothers me now and causes me to have flare-ups. There are cooling vests available to help with that. Or, I do less things during the main "heating time" during the day. I still do enjoy scuba diving (I have my Advanced Open Water Certification) but my legs get very weak so I "tweaked" how I dive now. I do not dive as much due to exhaustion and fatigue - it will knock me out for days. So I plan WHAT DAYS dive based on what else I have planned later that week and the next week anticipating huge amounts of exhaustion. I only do boat dives and drift dives. I also let the staff on the boat know that I will be taking my gear off in the water b/c I have difficulty climbing stairs and ladders and have to use my arm muscles more to climb into the boat - or might need their assistance to get back into the boat (the gear is heavy and I do not need that extra weight when getting back into the boat). Get the point? Just tweak.
Finally, five...try to stay positive. It is hard sometimes but what is going on "today" and how you are feeling today is most likely temporary. If not, then get help. There is good in everything.
Anyway...those are just the 5 main things that I learned after going through my hell the past 3 years. There are things that I should have done differently - starting with NOT getting a disability lawyer from the beginning and using the MS resources available. I am proud of my self and feel very strong. After all, I made it through those 3 years basically on my own. That makes me feel powerful. If I could do that, then I could do just about anything even if I might have to tweak it.
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Cure within a few years?
MSAA Online Focus Group - Day 8
