19 months (don't read if sensitive)

[[no...]]

I don't know how I can keep going like this. It's just too unbearable both physically and mentally and it has been that way for far too long.

I just don't understand how I can keep getting worse all the time and how it's possible that that has been going on for at least 16 months straight now (In many ways it's been going on for more than two years, but the second month off there was some slight improvements with some symptoms even if it was so horrible then too, other than that I've been getting worse and worse since the start of 2014...).

 

The horrible pain and burning is so bad that I just want to scream constantly and the anxiety and depression are through the roof. And then there's all the other symptoms both physically and mentally that are too many to name (insomnia, DP/DR, horrible tightness, feelings of an exploding body and head etc etc etc etc). It's so brutal and it keeps getting worse.

 

More and more of the time now I'm only able to lie in the fetal position trying to breathe and somehow endure the indescribable horror. It's just far far too much.

 

I think so much about death because it seems like that is the only way to escape from all the horror. I have held on for so long, but it has been worse than pointless because the only thing that has given me is even more and worse terrible suffering. I keep telling myself that I have to hold on until it starts getting better. Or stops getting worse.... But I have told myself that for so long now without it ever happening. I pray and I fight and I hold on, but to no avail. Just getting worse...

 

I guess something (or everything...) in me is broken. I was "supposed" to get better a long time ago. Or at least stop getting worse. I don't know why my entire system keep deteriorating. Why does it get worse and worse the further out I get? It makes absolutely no sense. Man, have I fought... I have done everything I can and a lot that ought to be impossible which I have done anyway out of pure desperation (and spite).

 

I'm so scared and depressed because I can't remember reading success stories about people who have still gotten worse so far out. I have left all the success stories behind I feel because everyone started to get better earlier than this. Or at the minimum stopped getting worse (or they weren't this bad to begin with or they had some windows or one window or one improved symptom or whatever...). I have more or less stopped writing here because I'm in too bad a shape to write (I've also had to deactivate my main email address because I just can't handle writing in general. The only writing I do nowadays is with a couple of people here that are also suffering horribly). It also seems pointless to write this because I have already been told for so long that it can only get better etc which it patently hasn't which in itself is scary, I guess I'm writing this just to get it out or something...

 

I just have to say that I doubt if I'll be answering much on this thread. It is just to hard to write now, I'm truly sorry about that. Please no alternative theories, yelling or other "hard" stuff, I just can't handle that...

[[lo...]]

I am so sorry, norv,  I often wonder how you are doing and of course always hope things have got better.  I identified with your description of curling up into the foetal position as I had to do that too during the worst times.  I cannot imagine enduring the suffering you have to deal with every day, I really can't.  You already know my story but it is worth maybe recapping. 3 months taper and no symptoms. Next 6 months some symptoms but carried on with life. Then mostly bedridden for 30 months.  At 15 months off things became much worse for me and lasted about 6 months.  So in a way things gradually deteriorated from the point of jumping to well into my 2nd year.  Since then it has got easier.  Even the waves are easier now.  I was just lucky that I started from a point of few sxs.  Your starting point was clearly very bad so any increase in sxs is unbearable.  The only encouragement I have is that many folk do get worse in the 2nd year and then start to improve.  I don't know how you can keep doing this but please try to hang on.  Please don't feel you have to reply.

 

Hugs

 

Fiona 

[[ra...]]

Novegia - I'm sorry you're feeling so bad but assure you at your stage I could have written your post word for word - In fact many times I wrote posts almost the same as  I was desperate to get reassurance because  I felt so physically and mentally ill to the point of almost praying for death just to get out of it.  I am now at my 27th month and have only recently began to get a few hours, mostly evenings, where I feel much better as the sx either go or are less severe.

 

So this is improvement for which  I give much thanks, especially as I am still like the walking dead when I wake every morning and this can last quite a few hours, sometimes all day.So my days are still pretty rough to say the least -  I cry a lot and still have many times when I feel I am dying, but not so many  as it was a few weeks ago.

 

At your stage, regardless of what anyone told me about healing, I had completely given up any hope of ever getting better as things just felt worse and worse, but over the past few weeks since round about month 26, because I've been getting the little breaks it's given me hope that, although it's ridiculously slow, things are beginning to improve. So am just continuing to get through one day at a time as best I can, as am still quite bed/housebound because every little exertion wears me out,  but now have  hope this will change soon so I can get up and start living.

 

It WILL happen for you, too, in TIME, so just hang in there.

[[Fi...]]

Norvegia, my friend, I'm so sorry you're still suffering so terribly.  But I sparked up when I saw you had posted because I've been so worried about you, especially when your regular e-mail was shut down and your PMs (at least from me) had been blocked.  I'm so glad you're still hanging in there, horrific as your situation is.  I really have nothing to offer by way of any advice or platitudes.  All I can say is that I care very much about you and I know that a lot of other people here feel the same. 

[[no...]]

Thank you Fiona, Racksha and FJ for your kindness and care! 

I'm sorry for not being able to write more...

 

 

FJ: I've had to do it for the time being for everyone (besides two people) because it was just too hard to answer messages. Sadly, it was also too hard to write everyone and explain that so I just had to shut it down. I'm really sorry...

 

Edit: Oh, and that sorry also goes out to others trying to write me who has come across that block. I'm truly sorry...

[[Te...]]

Norwegia,

 

I'm just so sorry you are in such pain.....I was so happy to see you posted I think of you so often...I wish I had some magic  potion to help with your pain....I'm also very lost....scared...and haven't really seen any healing signs...everyday seems different...some days I feel like I want to die to escape from the pain...which feeling this makes me really sad.....there is no medical support for our condition which is very saddening ......only friends on here can understand the pain that we go through...I still I'm holding onto faith that we will get better....you are always in my thoughts and prayers!

 

Sending you hugs....my dear friend!

 

TM

[[no...]]

Texas mama:

Yes, that's exactly how I feel too... It's just too painful :-(

 

Thank you so much for your kindness and caring, I think about you so often too,my dear friend, and you're always in my thoughts and prayers too. I so hope and pray that you'll experience significant and lasting healing soon 

[[Li...]]

Hello there--

 

I'm so sorry that you continue to have such a horrific time but please know that your strength in fighting this is giving strength to others.

It sounds like you are having a much worse time of it than many but the other posts on here tell you that you are not alone.  I hope that feeds your strength. 

 

Please keep fighting.  You are one of the kindest people around and you are helping others just by being here.

 

Thank you for being strong.

 

 

 

[[no...]]

Thank you so much, Liz, you're always so very kind 

Sorry for the (very) short answer

[[so...]]

Norv,

 

Please don't give up.  So many people, like Racksha, feel like things are getting worse for two years, then they start to see improvements, little by little, in the third year.  Our healing journeys are all different.  I have many of your symptoms and I honestly feel I can't do this another day, then I just get through the next day, counting the hours until sundown.  Trust me, I spent most of my days in the fetal position clutching my pillow unable to get enough air in my lungs for 16 months.  In the past 2 weeks I haven't been gasping with chemical anxiety spells all day.  They petered out slowly and became intermittent at different times of the day instead of all day non-stop.  I'm healing at a snail's pace.  Your days of relief will come soon, Norv.  I promise you.  If I improved, you will too.

 

Love, Sofa

[[no...]]

Thank you Sofa 

[[so...]]

You're welcome, my buddy.

 

I just don't want you to go down the despair hole when I know you are going to get better soon.

 

Love, Sofa

[[no...]]

Fiona and Racksha:

 

I just wanted to say that I'm very grateful for you telling me that you also experienced worsening at my time off and that you have seen (some) healing since that time. I hope and pray that the healing will go faster and faster for you now so that you'll get well again soon!

 

 

I'm so sorry that I'm unable to write more to you and everyone else that has been so kind to me on this thread...

[[no...]]

Sofa: 

[[Te...]]

Norvegia,

 

When you can....please see the thread I started on the protracted site......about success stories..

Sorry I cant pasteand copy  it on here with my iPad.....but there is some very hopeful success stories....just hoping this might help.....coping with this everyday pain....I know is very hard......but there is hope..

 

TM

[[pi...]]

Norvegia you are not alone, i post a similar post as yours last month, the tille was the same as you that's amaze me when i saw yours, my title was, "19 month, dont read if you searsh positivity " , have lot of thought of reinstating because it's too hard to handle and too long

 

We are very similar, im a few weeks after you and not seem to be better than you, im in bed ALL Afternoon EVERYDAY since like month 14, it's been keep worsening since like month 14, exausthion is inhuman, psych symptoms are crazy, legs and arms feel numb like they are not attach to my body, have difficulty just walking because my knees and ankle hurts etc etc etc

 

I too thought i would be in a better shape at 20 month in a few days, i read so many succes story and heard so much that " everybody heal at 18 month " in the past that now i realize how crazy is this process and that all the expectation i had before were completly illusion and false, and that made me feel like reinstate a lot those last weeks because things are just stuck or worsening and not improving

 

Everybody tell you it gets better but things are just keep worsening or stuck, like it's stay the same everyday and im not functionnal more and still severly disabled

 

Im scared because ALL the people that were here when i registered in 2014, no one is healed, and i find that crazy because you saw some statistics saying that 95% heal at 18 month - 2 years etc and that not seem to be true at all here

 

Only a few story and testimonies keep me going, like seekingsanity, Healing hope, miss jen, jenny21, cooperten who turned the corner and didnt had real window of themself until month 21-22.

 

But even that i have difficulties trusting it because when i look at their symptoms they were in a better shape than us and more functionnal before hitting 21-22 month, so i dont realy know

 

Like you im lost in this and dont realy know if there is hope for damaged people like us,

[[no...]]

Thank you for telling me about that, that sounds great! No need to worry about the link or anything, I've found it

I'll read that thoroughly 

[[Fi...]]

I'm so glad you showed up again here, Norvegia.  All we can really offer is the "social medicine" of letting you know how much you are valued and that you're safe here, but that can be powerful medicine indeed to a traumatized brain.  Your brain can better attend to healing itself if it's not completely in the alarm mode of fight or flight or shutting down with the increasing depression that isolation brings.

 

You needn't apologize a bit for not writing more.  I'm just glad you reached out so that everybody could remind you how much you're cared for here.

[[no...]]

Thank you for your extremely kind words, FJ 

[[Fi...]]

Nothing less than you deserve, my friend.

[[no...]]

[[no...]]

Norvegia,

 

When you can....please see the thread I started on the protracted site......about success stories..

Sorry I cant pasteand copy  it on here with my iPad.....but there is some very hopeful success stories....just hoping this might help.....coping with this everyday pain....I know is very hard......but there is hope..

 

TM

I have read the other thread now and I have to ask: did you start the thread over there to help me find a success story? If so that is so incredibly kind of you! Thank you so very much  :smitten:

[[no...]]

Norvegia you are not alone, i post a similar post as yours last month, the tille was the same as you that's amaze me when i saw yours, my title was, "19 month, dont read if you searsh positivity " , have lot of thought of reinstating because it's too hard to handle and too long

 

We are very similar, im a few weeks after you and not seem to be better than you, im in bed ALL Afternoon EVERYDAY since like month 14, it's been keep worsening since like month 14, exausthion is inhuman, psych symptoms are crazy, legs and arms feel numb like they are not attach to my body, have difficulty just walking because my knees and ankle hurts etc etc etc

 

I too thought i would be in a better shape at 20 month in a few days, i read so many succes story and heard so much that " everybody heal at 18 month " in the past that now i realize how crazy is this process and that all the expectation i had before were completly illusion and false, and that made me feel like reinstate a lot those last weeks because things are just stuck or worsening and not improving

 

Everybody tell you it gets better but things are just keep worsening or stuck, like it's stay the same everyday and im not functionnal more and still severly disabled

 

Im scared because ALL the people that were here when i registered in 2014, no one is healed, and i find that crazy because you saw some statistics saying that 95% heal at 18 month - 2 years etc and that not seem to be true at all here

 

Only a few story and testimonies keep me going, like seekingsanity, Healing hope, miss jen, jenny21, cooperten who turned the corner and didnt had real window of themself until month 21-22.

 

But even that i have difficulties trusting it because when i look at their symptoms they were in a better shape than us and more functionnal before hitting 21-22 month, so i dont realy know

 

Like you im lost in this and dont realy know if there is hope for damaged people like us,

 

Hi,

I somehow managed to not see your post before now. I'm so sorry about that...

 

I'm so sorry that it's so horrible for you too. I as always recognize myself in so much of what you describe. It's just terrible how awful and relentless this nightmare is :-( I don't understand how it's possible and I feel so damaged too :-( As you say, it's the same or worse nightmare every day and it's been going on for so long now without any let up...

 

 

I really hope that things will get much better for you soon

 

Sorry for the short and late answer...

[[no...]]

I honestly don't think I can do this much longer, it's just too off the charts horrible and relentless.

It's just hopeless to live like this. It's so brutal every day and no matter how long I have held on it just keeps going without any let up at all. It's been going on like that for more than two years straight now. I just can't see any hope anymore. I mean for example when I was 3 months out I thought that if I just managed to get to 6 months it had to get better. I somehow did and I wasn't, it was worse.

 

And now that's 14 months in the past and I still haven't gotten better, just worse.

What's the point then? It doesn't help anyway so why put up with any more terrible suffering.

 

Man, have I tried to hope... And pray and fight and accept and thinking positively or whatever. I'm just completely worn out both physically and mentally. 

 

And people say hold on just a little while longer and it'll get better because that's when I got better. Well, I have and I have passed those time frames by 16 months, a year, 8 months etc etc etc too. For some horrible reason, it seems that nothing heals for me. Not only that, it just gets worse. 

It seems entirety pointless to suffer like this...

 

It's so cruel to endure the really unbearable because you fervently hope that by doing so you'll get to see something better and then always experience the opposite: that all your enduring just makes you experience something even worse. And for that to just go on and on and on...

It's also scary and depressing beyond words... It's impossible to explain with words what that feels like. To be in such a nightmare, to so intensely trying and hoping to wake up just to sink deeper and deeper into it.

 

Just the part of trying to deal with all the crushed hope and dreams will destroy a person. To think about how you thought it should be like now compared to what it's really like, it's so undescriablely brutal. And you feel so stupid. It's like you have to carry the entire weight of the difference each and every day. No, every minute...

 

 

(Please no hard stuff or alternative stuff...)

 

 

[[pi...]]

i hear you norvegia, same here at 20 month off one month behind you

 

Everybody tell you will get better blablabla it took me 2 years to heal blablabla and when you look at their story they were mentaly and physicaly better than we are now at our stage

 

This process is just a non sens to me, i thought i would just have to  be off benzo, psych drug and alchohol to heal, well it seems it dont work like that for eveyrbody and that our brain just cant reverse the damage

 

I will i could tell you something positiv but im in the same boat, wondering why people keep telling you to hang in there that it will get better while it's clearly not

 

When i read succes stories im even more angry because those people are describing symptoms far less violent than we are at 19-20 month.

 

When i read some people telling they are OK/good at like one year off, seeing that they go to restaurants etc and complainng about lingering symptoms that took 2 years to heal it make me so angry

 

im near 2 years off and still not able to go to a restaurant, exercize, visit friends without symptoms etc

 

It's like succes stories of people just disapointed me even more because they were far way better than us at our stage, when i read a guy saying he was the worse case in benzobuddies deathly ill etc and going at the gym and lifting weight at 18 month, i mean wtf ? Im 20 month and barely manage to walk 20min without feeling bad

 

Just a crazy process