You need to make those habits: Seriously... - My MSAA Community

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You need to make those habits

RoyceNewton profile image
β€’9 Replies

Seriously "YOU" really do. 20 Years of Relapsing Remitting ms (RRms) and it is the habits that have kept me together, establishing a routine, makes life so much easier. Get everything ready for injection. Set it out on the table right to left. Left to right is too easy, "YOU" have to think about what "YOU" are doing. Now eat first, then take the needle every other day, being careful to ignore the sharp sticky bit. I really do have a phobia about needles.

Much easier today. I just take a tablet twice a day. I have an alarm set at 0555 that's 5.55 AM and the next one twelve hours later and woe be anybody that gets in the way of my medicine. Having been on it for so long I do cut myself a little slack but not often.

Other habits have to include my chin up bar in the doorway. Yes I know I do not do enough chinups but I do do my leg lifts. Eleven every time I walk out the door. On one of my several opioid overdoses, I could not get out of bed let alone stand up, so I set about strengthening my core. At least I could sit up straight in a wheelchair when they took me to the doctors.

Another good thing is to put things back exactly where they came from. Keys go there, cutlery goes there, plates go there. It is not hard to do it just let it become a habit, that way no matter what the situation "YOU" will know where things are that "YOU" need or want. Without searching and having that frustration of not remembering. A nasty thing that ms likes to do "where did I put those keys they were just there". We all have an illness to a lesser or greater extent that can effect our memory and our emotional stability. Why get upset that "YOU" can not find something or remember where it is. Develop that habit of knowing where things go and what to do. I highly recommend putting the toothpaste on the brush first and washing the soap off before drying.

Mundane and silly, I know. But "TOU" are doing everything that "YOU" can to make life easier and less stressful. Do what "YOU" need to, to make your life as pleasant as an afternoon in a rowboat on a flat lake, not like a fishing boat in a huge storm. Visualize "Deadliest Catch" or "Perfect storm" No "YOU want a nice relaxing quiet afternoon on the rowboat, just enjoying yourself, relaxing. Of course, remembering that RRms will do everything it can to change this. A very good thing about habits is that if "YOU" really make them a part of your life, is that when "YOU" do not do not do them. "YOU" accept that "OH well not this time but I will do it next time, no biggie".

Do "YOU" see here that "YOU" are doing things to strengthen "YOU" to build up the balance of your success vault for those times when RRms is sneaky and throws an unexpected spanner in the works. I can not make this point enough. "YOU" all have to do everything that "YOU" can to protect "YOU".

Wear your protective underwear, who knows when the bowel or bladder will act up, why put yourself through that mental anguish.

Take your DMT. it will not cure you, but it may slow things down enough for you to walk your child down the aisle.

Eat better, there is no ms diet but there is such a thing as heart attacks.

Exercise, "YOU" have no reason to not be more beautiful and fit than ever. I just recommend not being to excessive. Start slow and be gentle with yourself.

STOP smoking and maybe drink a little less. A bottle of spirits will only make things worse, depression. A single glass if Australian Red will do the job. Sorry I could not resist plugging Penfolds there.

Start your own "Health Log" and keep it up to date. Your failures, your worries, hurts and pains. AND most importantly your SUCCESSES. Yes I know that "YOU" do not think "YOU" will ever have them anymore, but I assure "YOU" that "YOU WILL"

This is not an easy two aspirins and a rest condition. It will test "YOU" in ways that nobody can tell "YOU" and in ways that can never be imagined. I will tell "YOU" though, that "YOU CAN" and "YOU will", "DO" this your ms life. The strength is within "YOU", just have a longterm goal and start moving towards it.

Royce

with the right habits, RRms is a "DOABLE" condition

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RoyceNewton
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9 Replies
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BigMar7 profile image
BigMar7

I agree with you Royce, you can live comfortably with RRMS. I am progressing little by little. I have been off Copaxone for over a year which was because I had read that when you are 65 or over, the meds might stop working. My MS doc who is a Ms specialist look at all my MRI results which had not changed in 13+years and agreed with me. I have a plan that I follow to make life easier.i live in a two story house, I make my bed every morning to make sure I am awake before I go down the steps. If I’m going to walk a lot I take my walker. I wear sanitary pads, which are for bladder leaks, (there’s a whole aisle in Target ) all the time. Be prepared! You Can! πŸ˜€β€οΈ

RoyceNewton profile image
RoyceNewtonβ€’ in reply toBigMar7

Thank you, I really am on the right path, your experience is very much appreciated.

GildaS profile image
GildaSβ€’ in reply toBigMar7

May I ask if you have experienced any changes since going off Copaxone? I am debating whether to stop myself.

BigMar7 profile image
BigMar7β€’ in reply toGildaS

No changes I’m happy to report. I was afraid for about the first week off that I would wake up with a terrible new symptom but nothing at all. My doctor did have me do an MRI at 6 months off,no changes so I will do another one in January in preparation for my appointment. I see him once a year. πŸ˜€β€οΈ

REDLIPS44 profile image
REDLIPS44

YOU did it once again, I have had MS for 19 years, the first 16 years you would have never known. Now I use a walker 24/7 and walking was my favorite thing. Now I will have to figure out something else to do. To busy right now, Getting ready to move back into my apt. that caught fire a month ago. But I will do it. THANK YOU

RoyceNewton profile image
RoyceNewtonβ€’ in reply toREDLIPS44

All the best dear

Kenu profile image
Kenu

I agree with Royce that it is a key to making it easier buy having a routine to follow πŸ‘. As far as DMT’s there has been no long term or short term studies on weather or not they work according to age. My MS specialist has written several books on MS and has also confirmed no studies on age limit? It is just like a flu shot, if you are not allergec to it, even at 40 percent is better than nothing. Hope this helps πŸ‘πŸ™πŸΎ Ken πŸŽƒπŸ‘»

RoyceNewton profile image
RoyceNewtonβ€’ in reply toKenu

Gee I started out in the mid 30's with interferon Beta 1B years ago, that was way better than nothing, DMT's are the way to go in 2018

Kenu profile image
Kenuβ€’ in reply toRoyceNewton

Totally agree πŸ‘πŸΎ Ken

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