After welcoming a new member (Gretel) I realised that we could do with a discussion that we could add our ~~Helpful Suggestions for Those Just Diagnosed~~ because not everybody gets a chance to look at all the profiles of other members.
I really liked Gretels suggestions, they were a reminder how important it is to have hope, think positively and take each moment as it is and move onto the next one. Never, ever, ever give in to despair. If you do feel despair, acknowledge it and let go.
Embrace hope, both because there is good reason to hope (medical research is advancing at an unprecedented rate) and because you REQUIRE hope to live with problems like this. Make the choice to hope regardless of the road bumps and brick walls in your way and actively practice hoping as often as possible! Thank you Gretel for these.
My suggestions would be
Be Mindful,
Accepting of the new you
Find a dr that is willing to learn about EM
Smile and be happy (look for any little things that make you smile)
Persevere, persevere, persevere with finding treatments that work and a good dr willing to trial new things.!
I couldn't have said it any better Gretel and Laura.
Some times that seems to get lost in all of the advice on meds and cooling tactics. Staying positive and keeping hope is the single most important thing you can do to help yourself as well as your loved ones.
The other thing is if your doctor isn't listening, helping believing it's important to find one that does. I know some people aren't comfortable just saying NEXT! when it comes to a doctor who can't be of help . You might find it takes going through several until you find the right one for you.
I agree we all need to keep positive and surround ourselves with those willing to learn about our disease. Find someone willing to listen and work with you to find some answers.
I just have to say, I try real hard to be positive, but when you have nights like last night, it is almost impossible to stay positive. I had restless legs and whole body last night, it took me 4 hours to get relaxed and fall asleep. I started taking my Nortriptyline again yesterday, and I think that is what sparked it. I have a tendency to react the opposite with meds. such as muscle relaxers and antihistamine, they make me all jittery and restless.
Trust me gtrembley it is way easier said than done. I know. Last night was a bad night for me as well. The temps around here have just started getting warmer and sleep is hard to find. I was in so much pain last night and I was watching TV and saw some show about home videos of people doing funny things. It showed a man after dental surgery so out of it and happy saying funny things and I just broke down in tears wishing I had something that could take my pain away. At times like last night I could care less if it made me out of it I just wanted a break from it all and a chance to get some sleep!
It is not only ok to be frustrated, sad and angry by it all but normal too. For me it takes a big effort to be positive and I allow myself to get down , cry and even scream at times but I have to shake it off because I know it won't help and it actually hurts. It physically hurts when I allow myself to get upset. It triggers the electric burning needles with pressure on top of the pain I was already in! It has taken a conscious effort to minimize my responses to it all.
I will allow myself one day here and there to feel bad and be as angry , sad or frustrated as I want to be then the next day I shake it off and get back on track. If I don't one day will turn into another then another and another and it will become the new me. It is hard enough dealing with this and loosing so much of myself because of EM and the last thing I want is to loose the only thing I can control which is my happiness and sense of self.
I wish you the best and I hope you can keep yourself through all of this. Like I said .....easier said than done.
Take care,
Alina gtrembley said:
I just have to say, I try real hard to be positive, but when you have nights like last night, it is almost impossible to stay positive. I had restless legs and whole body last night, it took me 4 hours to get relaxed and fall asleep. I started taking my Nortriptyline again yesterday, and I think that is what sparked it. I have a tendency to react the opposite with meds. such as muscle relaxers and antihistamine, they make me all jittery and restless.
Wonderfully put and exactly what I needed to read on day 2 of diagnosis... Especially.."Find a DR. that is willing to learn about EM" , as that is exactly what I feel will need to done. Gave me hope! :) So Thanx!