RRms is challenging, but only challenging - My MSAA Community

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RRms is challenging, but only challenging

RoyceNewton profile image
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RRms (Relapsing Remitting me) is challenging. Very challenging at times but no more than that. Yes sometimes it is painful, let me tell “YOU” about pain one day. It is confusing frustrating, annoying and disheartening, But without a doubt it is Doable. I understand your fear at first, even your fear years later. I have not noticed mine go totally away and it has been over twenty years. With that in mind may I make a suggestion. At this point “YOU” have done your research. “YOU” know this is incurable, “YOU” know that Disease Modifying Therapy (DMT) is your best bet for staying standing longer and “YOU” are making efforts to obtain and start one. “YOU” wisely understand that not every medicine works for every person so if “YOU” have to change “YOU” are willing to. “YOU” know never to stop unless medically “YOU” have to, just never just on a whim. “YOU” have got your head around this being a lifelong condition and what that means to “YOU” as an individual.

Do “YOU” see there are many things to do. We have not even mentioned exercise, diet, smoking (NAUGHTY NAUGHTY) alcohol sex relationships. Yes, there is a lot, are “YOU” overwhelmed, “YOU” very well might be. This is about the time that “YOU” might stop, tale a look around and give yourself time to pull yourself together. When “YOU” are at least partly pulled together just stop. Smell the roses, pat your dog and take a deep breath.as I said this is a lifelong disease. “YOU” are taking your DMT and the other parts will fall into place as “YOU” progress. Cut yourself a lot of slack. Just do nothing and contemplate your navel (belly button) If “YOU are better than me, meditate, I have difficulty slowing my mind so no meditation I think. No just relax, it is going to be alright. RRms did not happen in a day, it won’t be coped with and managed in a day. Just slow down, this illness is doable give yourself time to do it.

Having said that RRms is very tricksy. “YOU” may think that “YOU have all your ducks in a row and that everything should now go along like clockwork. I am sorry RRms is not like that. “YOU” should have a grasp of how large your Central Nervous System (CNS) is,(Amazon picture chart) “YOU” can say wow big. That is what your RRms gets to wreck havoc in, no matter how perfectly “YOU” do things. It will go astray and throw “YOU” curve balls. It is normal relax, expect it and adapt when it rolls over “YOU”, it is a condition of our illness. Learn to adapt, adapt again and keep moving along your very long ms life path, but most of all relax a little and forgive yourself if “YOU” need to. “YOU” are okay, “YOU” can do this illness and do it well. Relax a little and start, or keep doing what “YOU” must to achieve your goals. Take your time and be gentle to “YOU”.

Royce

Believe in yourself

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RoyceNewton profile image
RoyceNewton
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carolek572 profile image
carolek572CommunityAmbassador

Always believe in yourself, always. And never ever give up! :-D

Bodega1939 profile image
Bodega1939

My experience with RRMS was that the relapsing was fairly short and involved only one issue, like balance or not being able to walk straight or coordination....and took only 3 or 4 days with a long tail off and with an almost undetectable aftermath. The work arounds, that I was finding,were developing new neural pathways and using them took far longer. But the time between R and R was really lengthy. While recovery was long, the benefits were much longer. I had no real trouble with it for years and years. I know I was very lucky...after the first one I began eating organic food mostly and my exercise program became intense. I totally eliminated MSG, carageenan, and High Fructose Corn Syrup from my diet and if I didn't know what a content name meant or could not pronounce it I did not eat or drink it. My food costs skyrocketed and I lost weight nicely.

My secondary bout with MS has been far more difficult. It seems I am not recovering normal function and every relapse is building on the destruction caused by the last relapse. There seems to be no way I can get "in front" of it. My last relapse has been a real bummer. I am not sure when the effects will quit. I did write to my neurologist about a week ago and he has not responded. It may be the VA doesn't want to fund this on top of the abatacept (Orencia) and tariparatide (Forteo) they are already paying for. I an so grateful. I don't know. I just know I am fairly miserable regardless of my mind set of this is part of the All. Maybe it is, but that doesn't mean I should give up. Ha! And that is part of being Human.

RoyceNewton profile image
RoyceNewton in reply to Bodega1939

it is what it is and it is our purpose to adapt make the best we can of it and learn from it. As a buddhist you should know that there is a purpose, Maybe just one that we do not see, yet

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