This is our life now we make rules

[RoyceNewton]

How do "YOU" cope? How do "YOU GET through it?

Asked those questions of myself many times. Especially at 3 am sleepless and in untreatable pain from Trigeminal Neuralgia. I did actually treat it I kept overdosing on opioids. I do recommend against this as the pain never subsided I just ended up in an ER scaring everybody, though admittedly it was interesting to watch.

So how do I/"YOU" cope? I made a rule, I personally like rules they give a person some sort of guidance and stability, even if I do make the rule myself. Maybe a little silly, but so is ms. ms wants to take away my stability. Knowing that every morning I leap out of bed, clean my teeth drink my coffee kiss the children and go sit at my desk moving paper for eight hours. ms takes this away, so "YOU" see the point in making rules for yourself... "You" can change them ignore them whatever suits "YOU", as they are your rules. Your foundation, your stability. That is how I cope. I give myself rules, guidelines to follow. With a topsy-turvy mischevious illness, I have something firm to hold on to.

How do"YOU" get through it? Really rather easy when "YOU" give yourself a moment of quietness and just think about it. "YOU" get through it because of the most important rule. "YOU" can not deliberately hurt yourself, accidentally yes but deliberately NO that is against the rules. Now having laid on the floor with paramedics buzzing around me I fully understand accidentally. Let me assure "YOU" that I never meant to be on the floor, just for the pain to stop. The way I eventually found was to give somebody else clear written instructions on how to dose me, and to learn other techniques for slightly minimizing the pain. Meditation, visualization things like that. It did not stop the pain but it made it a little easier to cope with sometimes. Nothing is ever really perfect.

This is a tricksy, mischevious condition. "YOU" have to find your own techniques to handle the obstacles that it will put in front of "YOU". Some of us will barge through like a tank, some will ignore it and hide from it, others will stop think and ask themselves, what am I willing to give up, how important is this to me and how can I get around this obstacle. ms might be tricksy but "YOU" can be as well. Maybe that is a good rule to make yours.

Royce

I mades rules, I coped so can "YOU"

[Raingrrl]

I make rules for myself too. And when confronted with an obstacle, like you, I figure out a way around it. I developed a “failure is not an option” attitude when I was diagnosed and was also a single Mom with a demanding job and very long commute. I made it all work because I had to.

[RoyceNewton in reply to Raingrrl]

yes because we have to, for whatever reason we have to.

[carolek572 CommunityAmbassador]

Royce,

I agree with you that it is a good idea to develop 'rules', or habits as I call them. When confronted with something not expected, develop a 'work around' that is comfortable and acceptable to you. Habits are my way of making my life 'easier' for me to manage and stay strong.

Keep Smiling and Stay Strong,

Carole

[RoyceNewton in reply to carolek572]

always my dear, no reason not to ever

[CraigS]

My first rule is: Try not to fall down.

The second one is: Protect your skin (which includes sunburn and scuffs)

If I can do those two, life is pretty manageable. Problem is, I forget that I’m disabled and try to do stuff that I shouldn’t.

My wife made a rule too: NO LADDERS!!!

That one is pretty easy to figure out.

[RoyceNewton]

hmm ladders I am not allowed near them either.

[ALEXGRN65]

MY RULES NOW I CHANGE TAKING MOST OF MY HARD MEDS AT NIGHT , HIS ALSO HELP ME SLEEP 3 TO 5 HOURS OF SLEEP. 2 BY DOING THIS I HAVE NOT HAD A FALL IN 7 MONTHS. GOD BLESS YOU ALL

[RoyceNewton in reply to ALEXGRN65]

Very smart, that way at least you can try to sleep through the yucky bits

[ALEXGRN65 in reply to RoyceNewton]

Yes i try to sleep times i get 2- 3 hours some times 5-6 the pain in my legs and shoulder it hard

[RoyceNewton in reply to ALEXGRN65]

yes, I never enjoyed that either, have you tried a hot or cold compress on it or at the base of the spine?

[ALEXGRN65 in reply to RoyceNewton]

No i have not i also suffer from heat i am always hot wife tells to let my dr know but what can they do?

[RoyceNewton in reply to ALEXGRN65]

cool down where you are hot and at the base of the brain, there are techniques to cool down just look for them. For years I wore a cool wrap around my neck to cool blood flow down, also a cooling vest maAA has then and I think it is called polar pro online

[ALEXGRN65 in reply to RoyceNewton]

Yes that is great info thank you so much for the help i will pray for you

[RoyceNewton in reply to ALEXGRN65]

remember ankle and wrist cooling bands