a very short statement: It is okay. How... - My MSAA Community

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a very short statement


It is okay. How "YOU" feel is okay. This is your illness; these are your feelings, your fears. I do not expect "YOU" or anybody to understand mine. No matter how close they may be to me. I live in my head. My feelings and fears are mine. At 3 am when I can not sleep for whatever reason, I am there nobody else. I may be scared, honestly terrified but I must make it through to dawn.

I must, I and only I. I control me, not Relapsing Remitting ms (RRMS) not the drugs, not anybody. Not anything. Me, it took a long time to;earn to have that strength. Somedays it may weaken a waver, but there is always the prime rule " never intentionally harm yourself". Sometimes accidentally it may happen, which is why "YOU" must always try never to be alone, keep a list of the drugs "YOU" take somewhere were paramedics, ambos, a family can find them. For when "YOU" accidentally OD or scream for more opioids to stop the pain. That has saved me several times. Develop habits and patterns. Make things that "YOU" do regularly so ingrained that "YOU" just do them. Become the ultimate robotic soldier with some of your habits.

Your Disease Modifying Therapy (DMT) perhaps. It happens at this time; medicine is laid out this way. Go from left to right and at the end medicine is taken. Another dose done, 15 minutes now next time. Make it a part of "YOU" for it is now. It is our life with RRms. I can still remember the procedure for Betaseron injections from 10 years ago. I know where in the fridge space has to be made, bottom left corner midway back nothing in front so they are always seen. Habits my friends, procedures, rituals, call them what "YOU" like, now start doing that with other things, How "YOU" dress. Where things are in the house, how "YOU do things and how "YOU" want them done.

If "YOU" have control it is possible to start implementing these things to make your long RRms life easier. If "YOU" do not have control start doing them anyway, politely ask others to help. People will do remarkable things if "YOU" ask and "YOU are doing them yourself.

It is a very long path that we walk, with lots of unexpected road bumps. Know your disease, know your strengths and weaknesses and your ultimate goal. To live your very long RRms life the absolute best way that "YOU" possibly can, and if "YOU" can pass that knowledge to somebody else in need. My friend "YOU" will be living a worthy life.


Trying to live a worthy life. Worthy of what, who knows it does not matter at all. Just worthy.

3 Replies

Another great post Royce 👍. Ken 🐾🐾😊

Came back and reread, I really like the “live a worthy life “. Makes me rethink a lot of things going on in my life? 👍Ken 🐾🐾

in reply to Kenu

yrs, I wonder about mine sometimes, but you do the best you can

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