One of the themes that seems to be a constant across all of Ben's Friends communities is how we as individuals are able to get our families, friends and communities to understand our conditions and the challenges we face on a daily basis.
A number of folk often experience denial from others, things like "it can't hurt that much" or "it will get better soon won't it", a favourite of mine is "aren't you better yet?"
When you're not feeling the best, this can be the straw that hurts the hardest.
Has anyone got any success stories they can share, to help others get their stories across and understood?
Here is my 2cents: I think pain is a private issue and I keep it that way. I do not want to hear others opinions on my pain, my physician said TN,GN is like childbirth pain...............really?! I have had kids, and I believe I yelled. I have had the awful TN,GN pain and I drooled. No energy to yell.
I go off by myself, listen to music, take my medication......eventually it passes. I also ask for God's help. I am very fortunate that I have not had the horrible pain for a long time but I have TN,GN bilaterally and it visits me almost every day.
Dealing with pain is a very sensitive and private issue and the thing to do imo is learn what helps you deal with it, and deal with it successfully and stick with that process.
I agree about the judgement piece, agree its worse than childbirth too - .how do your kids manage I've got bilateral TN 1 & 2 on all branches, busted back and few other bits and bobs that fall apart on a regular basis. I also have King Charles spaniel who likes to go for a walk, but will end up with kidney failure - cause I can't always walk her; I have a teenager who spent half his teenagerhood extra angry because he couldn't understand why his mum wasn't "normal" and little one who's just hit double digits and stresses out so much because she knows if it rains, blows, or a fire engine goes past, or an alarm goes off I end up feeling like a moo cow chomping on an electric fence.. with Ninja's stomping knitting needles in my eye, ear, tongue yay.
So with me, and the teenager, who was utterly convinced it was attention seeking behaviour (LOL) I told him to bugger off and find his own place if he couldn't be civil, and told him if he was such a genius he should try Google - which ironically, was how I found Ben's friends. He didn't leave, but he did Google it, then he Youtubed it and finally one day, when we were alone, he asked about it. It was easier for him, when it was attention seeking behaviour, but now he understands, its easier for both of us. With the little one, I just keep telling her I'm fine, and I'm hoping she'll stop stressing out so much and let me be the mummy.
The worst thing about pain is it makes you really vulnerable and its not always easy working out the line of what to share and what to protect.. I'm pretty sure I'm not the only one who has the challenge. Pain comes and goes as it will, but having some one give you a hug, or fetch the drugs,. can make it very much more bearable :) sharing.
I think Doctors, mainly, need chronic pain sensitivity training. There is so much media and pre-judgement of others when it comes to pain. My ENT allows me a limited amount of a mild narcotic pain medication because he knows I am very self controlled in the amount I will take. My neurologist questions this because he says it will do nothing to calm the nerve-- it only "masks" the pain. Well YEAH! At least it makes life worth living. The neurologist, when I said, "I just want to be both pain and drug free", responded, "That is never going to happen in your life time". Gives one so much hope:(.
I am very medication sensitive and all of the anti-seizure meds give me unbearable side effects so it has been a lot of trial and error and I am far from pain free. Some family seem to understand when I am hurting the most I just remove myself to a quite room and they leave me alone until I get on top of it. Others if you share anything- mainly the drugs you need to take - they think you are making it all up. The most difficult part of this DX, I think, is there is no readily visible disability to the observer. Other than, wife, mother, daughter, friend, patient, is "in a bad mood" and complains a lot, or like me tends to pace like a wounded animal, cry, or disengage. My GNP is not intermittent, it is 24/7 for over 2 years. I think I finally have the right insurance to be seen out of my city by a specialist and hope and pray for some help and not further damage. One comment that sometimes helps people understand is; A friend of mine who was the nursing supervisor at the hospital I worked at (before a surgery caused this) when she heard my DX said, "Oh, no that is known as the suicide DX".
Sorry I rambled, but I know how hard it is to be trapped in a body that you can not be the person you once were and long to be, watching the years slip by --dealing with unbearable pain the best you can -- and add others' lack of support and it does feel like the "straw that broke the camels back".
There are breakthroughs all the time in medicine -- So hang in and know there are many of us out here that understand COMPLETELY :)
PS: to the Physician who said it is like childbirth -- tell them I wish for them a severe kidney stone and a really slow nurse with the PCA -- They will get a small taste of what we go through every day. Just a little humor. he :) he :) he :)
Well done ladies. I have enjoyed reading your last couple of messages. Had a laugh with you. I agree they can’t know anything about childbirth pain! I am one of the lucky ones because my medication is working (at the moment)
