~~The Bedridden Club~~

[[ra...]]

Hi  fonz - lookingforward  and all buddies on this site-  and Welcome to  nevercantell.

 

 

nevercantell:

 

I'm sorry  your having such a rough time, but a big 'well done' for starting out on this journey, which for some will be short, for others longer. Unfortunately,  there's no way of forecasting  when we start, as there's  nothing certain in withdrawal,  it's just  myriad  of ups and downs - windows and waves. I've just had a month of feeling somewhat better, only to wake up this morning feeling worse than ever again! But, regardless of the time needed for our healing, we all share the same experience of knowing how difficult it can be. And therefore, as bbs we can help, reassure and encourage one another each step of the way. This support has kept me sane during all this. And I have found that the best way to cope is by taking it just one day at a time.  As I am assured that we all heal one day - Time being the answer.

 

It's good you are able to take your dog for short walks, as they say gentle exorcise outdoors can sometimes help lift the spirit.  I have two dogs and  look forward to the day I can accompany my husband when he takes them  to the beach each morning. We live in the South West of England, surrounded by beautiful hills and dales, which I can see from my bedroom window, but I do  miss the sea. 

 

I find  hot baths can help a little with  aching  muscles - I have at least two each day, often 3, if the pain gets too much. (I ain't arf clean!)

I  too, suffered badly with nausea, having to dry- heave quite a lot, so just ate as cleanly as possible as and when I could eat.    As for the feeling agoraphobic , try not to worry. It  is often  brought about, and highlighted during withdrawal.  I had  it when the anxiety was high, but once I feel well enough to get out of here, I'm off into the great outdoors again!

 

Hoping  you will find our little group helpful - We are a friendly bunch - strangers united in a shared experience.

 

                                                                               

                                                                                                ***

 

fonz -  I'm so sorry you've had such a long wave, but it's good to hear your coming out of it now - All these damned ups and downs of waves and windows, makes it such a cruel a condition - As you  say, it often feels never ending. But I think it's just great that you've been out in public twice.........Bloody FANTASTIC  and well done you.

 

As your  just a couple of months ahead of me, your news gives me hope, as after a few weeks of feeling slightly better, I am now feeling absolutely dreadful  and completely bedbound again with the sxs back to square one - Nausea, dry heaving, giddy, weak muscles, feeling faint and inner trembling etc.....So I am right in assuming that my feeling better period was actually 'a window', and what I'm feeling now is a 'bad wave'  And is it normal for this to still be happening so severely at 15 months out?

 

Hope more good news from you soon.  p.s. Thanks for saying you don't mind me having a rant. They say 'every little helps'  lol

 

                                                                                              ***

                                                       

lookingforward  -  So glad to hear that things are slowly improving for you, as it's so encouraging for those of us following on behind to hear that things will get better in time - Thanks.

 

I've seen it mentioned in posts, but I'm not sure exactly what cog fog is (please explain) but I know what you mean about  the physical and cognitive problems  being so debilitating. There are days when I just hardly function and find even trying to remember something  simple, like my neighbour's name, difficult. And yet for some weird reason  my brain seems  to need to recall the name of just about every flipping  child I went to school with 65 year ago, or the words to every song ever recorded in the 1960's ! And Just doing this simple post has taken me almost 2 days!!!!!!!!!!

 

As for the physicals, I know what you mean, as  it's  so many ups and downs on a daily basis that you never know how your going to feel - I've just had 4 weeks of feeling slightly improved for the first time in over 14 months,  yet today, out of the blue, came worse  sxs than ever, lasting  all day to the point where I felt too ill to get out of bed - have listed my many sxs on the post to fonz above.

 

It's good to hear that your emotionally okay,  and  that things do settle down on that front, as I'm still alternating between days of complete numbness, when nothing seems to register - and other times where I can't stop crying for the world and his wife. So it's a relief to hear you say it stabilises.

 

I think you've read my earlier posts, where I've said I had to give up watching the television at around the 9th month. Well, like you, I still can't because it makes me feel unwell and revs up the sxs.  But it doesn't bother me anymore, as a  lot of  it was rubbish anyway, so perhaps we are better off without it, well at least for the time being, as you have your radio and me, my books. And once we are more recovered we can get out off the couch, and out of these darn beds and get our lives back on track again

 

                                                                                                  ***

 

Hugs and good wishes  to  all.

 

P.S. Inbetween posting this, I have got out of my pit and fed the seagulls in the garden - So things might  be on the up -  Hopefully lasting for a few hours, as I'm not sure what's happening at the moment,  as the sxs come and go,  often changing from hour to hour from feeling really ill to not so ill? And what's this latest  sxs all about where my face and ears are flushing and on fire?  - TELL ME GUYS, IS THIS REALLY HOW It'S SUPPOSED TO BE ?

 

 

 

 

 

 

 

 

 

 

 

[[lo...]]

Hi nevercantell

 

Sleep is the best thing.  I always feel better after sleeping.  Particularly after a period of excessive sleeping.

 

It makes the days a bit shorter too. 

 

Hugs

 

LF 

[[lo...]]

Hi racksha

 

cog fog for me is a constant fuzzy feeling in my brain, as if I am trying to think my way through a fog.  A bit like driving in fog!!  It is much worse when I have pressure in my head too.  It has got a lot better though.  The fact I can do crosswords now is a real improvement.  Before I would read the clues and nothing would pop into my brain as a possible answer!!  :'(  Now random words pop into my brain for no apparent reason. Concentration is improving too. Reading is still too difficult but I can write ok now.

 

There were many months when I could not post much on the forum.That is why I started posting images in my blog and it took on a life of its own so I now have a variety of cyber pets who get up to all sorts!!

 

These constant ups and downs are hard to bear.  All my physical symptoms disappeared a couple of days ago.  Now they are back!! 

 

Can't believe I will soon be into year 3 of this.  Ah well, next milestone is my birthday in June.  Maybe I will be better by then. It is crazy how the time passes but it does.  My brain is so fuzzy it just seems like a few months to me, not 2 years.

 

You are right about tv - mostly rubbish!! 

 

I was "watching" it 4 or 5 hours a day some months ago. Only half watched it.  Did puzzles at the same time.

 

I have done thousands of puzzles but I don't get bored.  That is really weird.  I think it is because my brain is so foggy and I don't really remember what I have been doing. 

 

Let's hope we are all healed very soon and can enjoy the summer weather.

 

Hugs

 

LF 

 

 

 

 

[[ra...]]

Hi LF - Sorry your sxs are back - don't now how you cope with all this at almost 3 years out.  As you know I've only done 16 months of this ,if I count the 3 weeks reducing from that piddly little 2mg dose  of Diazepam.  But I suppose we have no choice but to carry on, because, although my sxs are back quite bad again this evening, I hope  it never returns  to the time, just a few months ago, when I was literally pleading with God, 24/7, to let me die, as I just  don't think I could face all that sickness and  horror again. 

 

Thanks for the cog fog explanation. Thankfully I haven't experienced too much of that, with the  GIs  always overriding other sxs I've had thus far.

 

Can't write more tonight - feeling very nauseous.

 

Hugs xx

[[ra...]]

Hi guys -  I do hope your all feeling a lot better than me, as I'm feeling really peed off right now, and even a little scared. So I need your help please.

 

As I've said, things were beginning to get slightly better over the past few weeks, almost a window for the first time in 14 months, where I'd begun to see the wood for the trees at last.

 

Well as of yesterday that's all changed as the sxs are all back again with vengeance, and  I'm  back in my bed feeling horrendous - Nausea, dry heaving, feeling as though I could pass out even when lying down, lots of inner trembling, singing in hot flushing ears,  slightly light headed and off balance and a bit giddy, not wanting to eat, but having to in order to keep blood sugar levels up, weak jelly legs and even jelly arms, stomach churning and turning over.

 

This little lot has been coming on over the past the few days, with today being dreadful as it makes you feel so damned ill. It feels like my whole body has gone into some sort of panic state. And it's making me feel, not only disappointed and fed up, but really scared again, as the contrast between how I feel now compared to the last few weeks when I really thought I was making progress, is vast.

 

I am assuming that the last few weeks of my comparative wellness would be a little window, and this current state, a bad wave?

 

Has anyone had all, or any, of the symptoms I've listed, at 15 months or more,  as I so need to know if its just me, because, as said, I'm starting to get frightened all over again, which will only add more anxiety to my already anxious body, so I need some reassurance Guys.

 

The the sicky, fainty feeling, like you want to pass out, but don't, is really horrible, coming and going all day. Has anyone had this as I've never seen it mentioned in posts before?

 

Grateful for any help.

 

Thank you.

 

 

[[lo...]]

Hi racksha

 

So sorry you are feeling so very ill.  I haven't had your symptoms.  Perhaps you should post on other boards too as only bedridden folk come here.  Waves seem even worse after a window.  I had a bad night and wondered why I managed to endure months of suffering.  One night was bad enough!!

 

I hope this wave eases soon for you.

 

Hugs

 

LF 

[[ra...]]

Thanks LF, but where can I post it? If I post on the protracted forum,  as I used to when I had questions and needed info, I risk causing 'irritation' to bbs. And I don't want the upset of that again. And if I posted this on the Post forum, I risk worrying a lot of those just starting out, as If those way behind me think this happens after 15 months off, surely they would be concerned. So I'm inbetween a rock and a hard place with this one.

 

Sorry to hear your not good with your nights - hope things improve soon.

 

xxx

[[lo...]]

Hi racksha

 

I really don't think you should worry about upsetting folk.  If you need support you should post.  That is what the forum is for.  If you go the protracted board just say you want support from those a bit further on than yourself.  No one will mind a request for support. It was more trivial posts that were being complained about. As for the post withdrawal board, folk earlier on have to accept that some of us suffer a lot.

 

Hugs

 

LF 

[[ra...]]

LF.  Thanks,  I may give it a try, but not till I'm feeling a little better -  I'll wait and see how the sxs go over the next few weeks, as at my age I must try to learn to cope better and work these things out for myself and stand on my own two feet.

 

I did read one post on the post forum today, saying  Happy to be 4 days off and feeling 50% 

 

I thought Ah Bless      -      Just  hope all goes well for them!

 

xxx

[[ne...]]

Hi racksha

thanks for the welcome. My husband and I love the West Country, we`ve got friends there and are waiting until I`m ok so we can visit them again.

Thankfully I`m having a bit of a window with the muscle aches in my legs but I`ve got a stiff jaw and neck now grrrr!  The tiredness is my worst symptom, even after sleeping 10 hours I`m still exhausted. I wake about 4 times during the night and wonder if that`s why I`m so tired- not getting enough of REM sleep ( or whatever its called )

Sorry to hear you have nausea too - that symptom has followed me all the way through, plus night sweats. I see yours has come back with a vengeance - I had the dry heaving and thats horrible .  My doctor gave me some Stemetil which has helped- perhaps you can get some as well.

I`m following the Ashton protocol and reducing 1 mg every two weeks by reducing .05 per week. I don`t feel any better if I hold so thought I may as well get on with it. I`m wondering if the Diazepam are whats making me so tired also?

Well thanks for reading, I hope you feel a bit better today.

N

 

[[ra...]]

nevercantell Hi again - so glad you've had a little window with the muscle aches, and hope other sxs ease too - I really wish you well on this journey, your doing fine and will get there. Thanks for the West Country compliment - maybe we'll meet up one day when we are gloriously healed!

 

 

Hugs

 

 

[[lo...]]

LF.  Thanks,  I may give it a try, but not till I'm feeling a little better -  I'll wait and see how the sxs go over the next few weeks, as at my age I must try to learn to cope better and work these things out for myself and stand on my own two feet.

 

I did read one post on the post forum today, saying  Happy to be 4 days off and feeling 50% 

 

I thought Ah Bless      -      Just  hope all goes well for them!

 

xxx

 

50% at 4 days!!  I do not belieeeeeeve it!!

 

Hope you are a little bit better today.

 

Hugs

 

LF 

[[lo...]]

Hi nevercantell

 

Glad you are having a little window.

 

Diazepam could be making you tired.  It could also be withdrawal.

 

It is really hard when you feel exhausted all the time. 

 

Hugs

 

LF 

[[ne...]]

Thanks LF

I `ve just been to see the nurse about high blood pressure and mine`s thro the roof. She spoke to the duty doctor and he`s given me meds - he said the high BP could be because of the body stressing over the withdrawal.  The nurse also said the tiredness could be the diazepam.

My window vanished eek- getting myself to the nurse took every bit of my strength.  I`m back in bed and intend to stay here for the rest of the day.

I`m having blood tests tomorrow (more energy needed) to rule out anything else that can be causing this fatigue.

I am SO glad I found you all here......thanks for listening.

N x

[[ra...]]

Hi lookingforward - hope all goes well with you - sorry to say I'm in a really bad wave at the moment feeling dreadful and stuck in bed 24//7 again.

 

I can understand your disbeeeeelief  - It was posted on 15th March titled '4 days and feeling 50%'  I  really hope this bb is one of the lucky ones.

 

Bye.

[[lo...]]

Hi racksha, hi nevercantell

 

hope you both feel  better soon.

 

Hugs

 

LF 

[[ra...]]

Hi bbs -  Hope your all feeling better than I am at the moment  - Bad Wave.

 

Seeing as we are pretty much  all on the same bed/couch,  so to speak,  being stuck indoors 99%,  of the time with very little respite, I'd be grateful for your input,  as I think that only those who are, or have been, on this horrendous journey, can give a realistic and honest expression of what it feels like to live through this confusing  up and down window/wave  condition day by day. And much as I try to work these  withdrawal problems out for myself, it's hard to do so without the support of information  and understanding.  And where else can we turn when afraid and  in need of  reassurance. -  My doctor is as useless and unpleasant as a fart in a space suit,  as  after my bloods came back normal last year, she insisted there's no such condition as protracted withdrawal, saying it's all down to the anxiety of individuals!  WHAAAGH.........

 

Having just come out of my first little window lasting 3 weeks, when my sxs were less severe, I am now experiencing the following, and would like to ask if anyone is familiar with any of these sxs. And is it normal to still be getting these at 15 months out or longer?

 

I appreciate that mornings seem to be the worst time for most  people, but I am now waking up after having a good 8 hours undisturbed sleep, for my body, NOT ME, to be in some sort of panic state. And although the Ashton Manual says that panic attacks only last 30 minutes, this little lot can go on for hours, sometimes easing later in the day/evenings, if I'm lucky!

 

1. Feeling Nauseous and having to dry heave to get some relief.

 

2. Inner trembling/shaking in legs and stomach churning.

 

3. Feeling of weakness and white hot tingling  in hands/arms and legs (not  true weakness as my hands can grip tight and I have no problem

        walking to the bathroom.)

 

4. Feeling  ill as though I could easily pass out, - even if I'm lying down.(don't think it's low blood sugar related as can happen even after  eating)

 

5. Intermittent singing in right ear with rapid pulse in neck.

 

6. Flushing/burning both ears and face.

 

7. Throughout  the day alternating between nausea and food hunger/CRAVINGS.

 

When all this is happening I've noticed physical anxiety levels are high, but  don't think it's as a result of any reaction or prompting on my part, as I just try to keep calm and do abdominal breathing, so as not to add further anxiety - That said, I do find it takes very little to stimulate 'my own' anxiety.

 

I would appreciate your comments.

 

Thank you.

  xx

 

PS. lookingforward - Will take your advice and, after modifying, will post this on other forums too. - Thanks

[[lo...]]

:thumbsup:

[[ra...]]

Hi guys - Sorry to be a pain and moan - I appreciate we are all  individuals who can have different sxs at different times, but as it's been 5 days since I posted my list of sxs ,on March 15th, on this site and 4 other appropriate forums, seeking help,  yet had so little response,  I must assume  it's just me, and now anxiety High with worry. -  Can't stop crying and feel like just giving up, but been here before so expect it will pass - just needed reassurance and just wanted to know what others were like at 15 months out!

 

Hope your absence from Bedridden site at the moment means your out of bed and feeling a lot better.

 

cheers.

 

Racksha.

 

 

 

 

 

 

[[lo...]]

Hi racksha

 

I am sorry you haven't had much response.  Also sorry that you are feeling so bad.

 

I don't know where all the other bedridden buddies are.  They may be struggling too and not posting.

 

The protracted board seems quiet too.

 

I can't help re your symptoms but however bad they are, they will get better.  I know it does not help much when we are really suffering.

 

Hugs

 

LF 

[[ra...]]

LF thank you - Sorry but am really anxious and just don't know where to turn for reassurance - if not on bbs then there is just no where to go!

 

= 1 reply from protracted forum - nice lady, but said can't help

= 1 reply from post forum -  saying had no nausea - Time will make it better.

= 1 reply on diazepam support - saying best I post  elsewhere as most are still tapering.

= 1 reply on 12-18 month support - nice man, saying  had similar, but his panics only lasted 52 mins.

= 1 reply on bedridden site. - yours.

 

So out of 5 responses I still don't have answers,  so am thinking what's the point asking for help,  just give up - God I feel so afraid and isolated.

 

Can't say more tonight, except sorry for rant - just want to get out of this damn bed and join the others out playing

 

          xxx

[[lo...]]

I'm sorry you are so low, racksha.

 

It is awful when you feel frightened and alone.

 

I hope you will get some respite very soon plus some more replies on the other boards.

 

Hugs

 

LF 

[[ra...]]

Thanks LF  for understanding - Don't know what's got into me lately - Think it's partly due to  the disappointment of having had that little window, only to end up feeling Yuk in a wave again - That and the fact that 15 months stuck in this blumin bedroom is driving me slowly 'Doo-lally-tap' , as I believe they say in Ireland! - I expect you'll know what I mean when I say I am so frustrated at not feeling well enough to join in life yet, as mine seems to just consist of eating, bathing and sleeping 24/7 - Mind you, I am so grateful my reading ability came back - Don't know what I'd do without books, as they not only take you out of yourself on a different journey, but help to pass the long hours of nothingness.

 

Hugs xx

 

 

[[lo...]]

Hi racksha

 

I do know how you feel.  I thought that I was going to be well by the end of year 2 but that is not going to happen so I am disappointed. I also thought I would feel better when I was able to sleep during the night.  Just started sleeping normally but don't feel better. Disappointed again.  My symptoms are levelling out so not getting awful waves or good windows so it is just a daily grind of the same things now.  No longer feel terrible which is good but never feel well either.  I always feel worse when I have some expectations that are not met!!

 

I am fed up being in bed. I did go out today to the communal bins with my rubbish!!  That is my limit.  :'(

 

I am pleased you can read.  I can't do that yet but always find puzzles to do or post on BB. Play online scrabble with a friend. Can't stand the TV for some reason but listen to the radio.  I am hoping now that I will be better by my birthday in June. Who knows!!??   

 

Acceptance and patience are the best strategies but sometimes we just get plain fed up with it all.

 

Hope you feel better tomorrow.

 

Hugs

 

LF 

[[su...]]

Who is this fonz character?  You have the best club ideas! 

 

I have been bedridden through some of withdrawal, couch ridden (is that the same thing?) through the rest of it.  Borrrring!  Put a huge dent in my couch and in my netflix list though!