Here I lay in bed, on Christmas Eve, contemplating ending my life. In my early years I wished I could sleep the entire day and wake up with the toys under the tree. Not anymore. Now I wish I would wake up healthy.
I have tried in vain to get people to understand that the nerves in my leg demyelinate in heat or after exercise to no avail. Why does my leg feel numb in heat? No one that I talked to knows. The emergency room neurologist said it could be related to demyelination, but no one else has made a big deal of it, not even the multiple sclerosis doctor.
Yet, it must be MS. That one brain lesion? Is it too far-fetched to suggest that that and my urinary problems might all be related. But no, says the neurologist, the lesion is too small to be causing those problems. And yet people with primary progressive ms have very few if any MS lesions on their brain. For them, it is all cell death. The MRI never changes for them, the cells just die early. No inflammation.
But I don’t have PPMS? I’m too young apparently. I don’t walk with any funny gait. So why is my leg worse in the heat? Tell me! This is not a somatoform disorder, there is no way that I made up the sensation of pins and needles in my mind when I walk outside into the cold. Those are the nerves reconnecting.
Unfortunately it is not relapsing MS. I am not a lucky man. There are no markers to suggest that it is. No enhancing lesions. No feeling of exacerbation. I will be in a wheelchair soon enough. The rain pours outside. I wish there was a chance to start life over. This one is finished.
No one believes the boy who cried wolf. The boy who wanted love and friends but found none. I am alone. I wish I was strong enough to carry such an awful burden, but I am not.
There is no treatment for PPMS. Your axons die, then you die. It’s a neurodegenerative disease, much like Alzheimer’s.
I’m only 23, for Christ’s sake. I wanted a family and a daughter but now i will be lucky to be walking in a few years. I can’t believe all the pain and struggle I went through in high school and college ended in this dark, miserable path. I wish God would save me. I wish he would really badly.
My sin was carrying my stress and anxiety inside of me for so long. That probably messed up my brain in so many ways. I’m sorry God.
I will most likely end my life. That is such a selfish act, and I will miss my parents. And my only friend.
I hope there is a Heaven and that god forgives me and I can raise a family there and find love and be a dad. But not here.
Goodbye
Hello “Goodbyeworld”
Thank you for using The MS Society forums, I am sorry that the MS Hotline is not available at the moment. Please consider if you are feeling suicidal, or in a crisis, to contact the following:
NHS direct; they operate 24/7 and will be able to provide your local support services. Tel: 111
Samaritans.org: tel: 08457 90 90 90
And remember do call 999 if you are in imminent danger
Sincerely,
MS Society Moderator
Hello, I wish I knew what to say to help make things better for you, but I don’t.
I just feel so sad that you are young and quite rightly want so much from your life, and now fear you won’t
achieve it as you planned.
Please don’t give up, you’re young enough to be able to take advantage of one of the
new treatments that are being tested for PPMS. And just remember you may never need a wheelchair or get any worse.
I hope other people who are far more knowledgeable and eloquent than I am can give you advice.
Please ring the Samaritans, it helps so much to talk things through, you don’t have to give your name it’s all in complete
confidence.
Wishing you strength and peace x
Goodbyeworld, your obviously in a very dark place,so dark you cant see a light or way out, keep on fighting you have to believe your not going to be beaten,you will be listened to.
Believe me it won’t last forever if you get help as said above , please remind yourself Christmas time is a load of hype painting a picture of a wonderful life surrounded by wonderful people when in fact it can be the loneliest day of the year even if you do have people around you.
I’m in no position to offer you any physical or mental health advice. I am merely a fellow human with ppms who even without knowing you am very concerned and want you to fight, fight for the right to live and then you will find the strength to fight for small things that make you happy then you can grow in strength to achieve the bigger things.
This illness and the sense of no one knowing or not believing how everyday life is such a battle is a total ass.
The prison of our own mental health is the worst incarceration known in my opinion don’t let it win.
My thoughts are with you.
Pauline x
Well I for one am not handing you any sympathy.
How dare you come on here at Xmas time with that crap? There are people on here who have had PPMS for years, people who are very disabled, people who cannot even get out of bed without help!
And we all know that having MS is a whole lot better than what some people deal with. Cancer, Motor Neuron, Parkinsons… to mention but a few!
What about children who are born with terrible disabilities? Children injured in wars. Children who haven’t enough food to keep them alive.
Stop being such a pathetic, selfish moaner!!! People come on here for support from others who are going through the same thing… people who are dealing with raising families and doing their damndest to keep going and keep positive.
AND to make sure that their families have a good Xmas.
You have made me so angry this morning. Go out and find someone who needs help. God knows there’s enough people out there sleeping in shop doorways who could do with a helping hand!
Pull yourself together and stop being such a big baby.
Pat
Thanks Pat, the post really upset me, I hope to God if it is genuine they are o.k, if not then they obviously need some form of help! Whichever I hope God gives them the strength to become a stronger person with more self respect.
Have a wonderful Christmas Pat xxx
A hard message Pat but the right one. All of us with PPMS know that you have to make the best with what you’ve got. We all know that it is tough but you have to battle on. There is allways someone out there who is in a worse condition than you. Look for the positives, Goodbyeworld.
Please hang on in there, your message made me cry my heart really goes out to you, I have a son who is a similar age to you and i would be so sad if he ever felt like you. we don’t know whats around the corner and sometimes in the depth of despair we can be happy again, Please please please don’t do anything daft, their are people their who love you and you still have a life to live you will find the courage to go on and you . will look back on this one day. Im a mum of 7 and i’m aged 49 still undiagnosed don’t know what iv’e got i’m a wheelchair user im sad about it but not the end of the world, it may not even happen to you, who says you will end up in a wheelchair. Iv’e just received an assistance dog from Canine Partners a gorgeous golden retriever called Frazer. he’s helped me such a lot, when im sad his gorgeous brown eyes melt my heart, he’s definately given me something to live for. like you I also pray and that really helps me. Take care Lots of love Michelle xx
Well there you go, I have just got over depression and read this. With some help I hope you get over this patch, I have had PPMS for over twenty years and its been ‘GREAT FUN’ all I can say is get on with it and LAUGH.
Don
Well said pat
I want to make it clear, I wasn’t having a go at anyone suffering depression. Believe me I’ve been there myself and I know how bad it can be.
But to join the site with the user name ‘Goodbyeworld’ and then to say it’s your last Xmas… to upset everyone in that way… well it just made me very angry.
As I’m sure you all know, I have always supported people on here with depression, but that was not a person asking for help but was either a hoax or a person using the worst sort of emotional blackmail.
I just want to be clear that depression is very much a part of MS and we all deal with it on here and I will always support people who come on here asking for help, as I know I will get support when I too ask for help.
Pat xx
Pat we all know how caring you are and would never for one minute think you were being horrid. That post upset me as well and I understand depression as well as most, I’ve suffered for a number of years. If the post was from someone we knew from the forum and they’d hit a real low we’d all have been sympathetic but I have to agree with you, that post was quite inconsiderate especially seeing as they could have responded to the replies if they’d been in need of help. A simple thank you for the suggestions of people to talk to would have been welcome.
I’m sure I’m not the only one who feels that way. You’ve been a real support to many of us when it felt like we couldn’t carry on. Don’t worry, you’ve said what you feel and you’re not on your own with your reply, you just said what some of us couldn’t.
Cath xx
Hi pat, i totally agreed with you …that post was put on to upset people,i dont think for one minute it was put on for help,you only put what most of us were thinking…i dont have much time for people making threats of suicide, my brother tried it a few times a few weeks after we lost our Dad, i was so angry with him and i had to cut myself off from him as i was very ill with the ms and grieving for my dad,so having to cope with that too,well it was just too much…
J x
Pat, we all knew what you meant. You were right to say what you did. If it’s true then I feel very sorry for this person but to join a forum on Christmas Eve to write that is most odd and as Cath says if it had been real then surely there would have been further comments from them. I’m sure we all struggle with depression, I know I do sometimes but to wake up to that on Christmas morning was very upsetting. I hope it didn’t spoil anyone’s Christmas Day?
Hope you all had a lovely Christmas. Happy new year to everyone,
love Nina x
Hi Pat
That post was such a shock, it’s still praying on my mind. I sincerely hope they are ok.
what you posted needed saying it was probably what we were all thinking.
Mags xx
I hope he’s okay, my brother in law took his own life 3 years ago he left behind 4 children one of them was only 9, i wish someone could have stopped him he was such a lovely guy and had only remarried 5 months earlier it seemed he had everything to live for we all loved him so much and really miss him. i don’t think anyone can truely understand when people are mentally ill they don’t always think straight. On the other hand i’d hate to think it was a hoax that would be awful, but id feel so sad if he was really hurting and there wasn’t anyone to help him
Hiya i just want everyone to know that this post is word for word exactly the same but on a different ms forum. I won’t name it cos I think there’s a rule against doing that? Not sure but incase there is I won’t say it.
I read it and felt really bad for the poster then come on here and it’s also been posted. Goodbyeworld you’re ignorant & sick minded to leave the same distressing post on different chat rooms. Piss off please!
I just hope goodbyeworld has made it through Christmas. I would like to think, he slept, woke anew with the world looking much better for him. Maybe he even made New Year resolutions.
If he is still here then I’ll raise a glass.