Couldn't sleep last night, every time I lay down I would shoot up screeching in pain. I desperately needed someone to be there for me, to sit and talk me through the pain spikes. But I had no one.
When I said during my major pain episodes (of which I am in one and have been for a week) my boyfriend if he lived with me would essentially become my carer to a friend, she compared my illness to the flu. I wish I could wake her up in the middle of the night with a baseball bat to the face, see how she feels about the pain of recovery - and then explain, I am sorry, you got to recover out of the worst of it. I NEVER WILL.
I am not bitter I am sick however of people not getting that this is like having been violently assaulted every day - with all the repercussions (the shock, the heightened blood pressure, the fear, the hyper-vigilance over my own body, the repeated trauma of the pain suddenly starting out of no where and no answers given) as well as all the <bleep> limitations it provides. I can't go out because cold starts up or exacerbates the pain, I can not cook because I sometimes look at sharp implements and think of escape not cutting the carrots, my meds make me giddy, I am exhausted.
Sometimes it is all I can do with a hot or cold compress, to rock back and forth as the tears flow by, begging whoever will listen to take the pain away, screaming intermittently because the pain is too much. I haven't the wherewithal to read, or listen to music or watch Jeremy Kyle as those who are wont to calling me a spounger describe me as spending my day. I sometimes cannot even string a <bleep> sentence together enough to communicate what I need.
This is not something I would wish on a living soul. And as anyone who knows me there are certain people (pedophiles) who I would wish things on, not this though. I have never experienced such pain, and I never will. I have had sprains so bad I needed a cast to stabilise it enough to walk on it, I have broken numerous bones and walked on them. NOTHING COMPARES
And there is no cure. When I am pain free (I do get spells of it) I am happy, optimistic, capable and full of life. In the middle of the pain, I am miserable and depressed. I think of suicide - and hate the fact that I do - not as a way out of all the inner angsty pain, but as an escape from agony that I have heard described as worse than childbirth by a few women. I always tell someone I feel suicidal though, I never don't (Psychology background I guess)
So really, my boyfriend would be looking after me like her husband did when she had the flu???
Angela,
They don't call this the "suicide disease" for nothing. BUT--you can't let this win. We understand how you are suffering. It is very difficult and in some cases impossible for others to sympathize with us--human nature dictates we get up and do something about it instead of moaning and groaning. We know different, don't we? Our friends and family find it hard to continue moral support--not that they don't want to, but they feel helpless. My husband is supportive; my kids don't want to talk to me. My brother, who saw my mother go through TN, won't even ask me how I feel. While you can read many posts on the horrors, you can also read success stories. Success in fighting this horrible disease never comes as fast as we need it. Many have found ways to cope with the bad times and ways to keep the beast at bay. Forgive the cliches. My suggestion is to find a doctor who will work with you to find the right combination of meds and alternative medicines to control some of these episodes. Forgive me if I have missed your story, but I believe you mentioned you needed to find a neurologist in one of your posts. I don't know what meds you take now. You may want to change your sleep position--even if it means sleeping in a recliner instead of lying down. Did you check out MaggieO's UCC write-up? Keep reading and looking. You are still capable and full of life--just harder to fulfill that now. Have you tried keeping a pain diary? I found it helped me to understand the triggers responsible for episodes.
We will be here to listen and help any way we can.
Mary
I couldn't have said it better..the tears, begging, screaming.. the only difference is I have an amazing group of obscenities that I use and most of them are directed at God (which is a bit strange because I'm an atheist) I have had it for 8 years and am usually upbeat but this year for the first time suicide has been looking as an option. I hate that...because that's not in my nature but for the first time ever this week I've had to ask my father to hide his guns....The look on his face was devastating. I hate that I have to have people around and find myself always telling them sorry for having to go through it with me. I have never been able to express to my friends what it's really like to have it so I may be borrowing your description of it. You said it perfectly. Keep up the good fight my friend. To help me cope sometimes I use a little mantra "Science moves faster and faster each day" Lets just hope it hurries it's ass up!
The only way out of that feeling toward your friend is to practice forgiveness. As you mention no one understands this condition unless they have it. I had a hairdresser say that I must just be tired. I wanted to strangle her and stopped going to her. But then I came across the word forgiveness and I couldn't get away from it. To keep bitterness from taking up residence the only thing you can do is remember that other people won't get it. It's part of life with this thing. In your heart forgive them.