18 - 30 Month Plus Group

[[Ko...]]

HAPPY BIRTHDAY DREW!  Hope you have a wonderful weekend with no sx.

 

Coop- so good to hear from you. Sorry you're getting the burning leg sx. It does keep you awake.

Try ice packs. They sometimes help me.  Glad you're staying at 85 % or more. I'm not quite there.

50% for sure because my brain is back. So I'm stuck in a wave of horrible physical symptoms. I hope I follow in the footsteps of HH and all of a sudden just start getting better. I appreciate your kind words of support.

[[Co...]]

Korbe, getting my brain back with reliable clarity was the beginning of an improved baseline for me....the physical sx got somewhat worse, but the clarity and mind stuff really turned a corner when my thinking cleared up...

    I hope you follow in HH's footsteps too.  It is reassuring to know that others are still getting leg stuff at night. I didn't have it at all until month 21.  So glad to hear that you are feeling even a little better.  .  Wishing you big sunbreaks

        coop

[[so...]]

I'm back in acute again.  So tough.  Just panting my way through it.  I don't know how much more I can take of this.  How can my body recover from this trauma?  Why are the symptoms so intense after 11 months?

 

Sorry to rant.  I'm happy everyone else is doing well.

 

Love, Sofa

[[dr...]]

Rant away sofa. 

 

I got one of my glutamate storms.  Even though they only last 1-2 hours my brain likes to lie to me that it's not withdrawal.  My brain goes weird, hard to breathe, etc...    I have these mini waves within my waves and even on days that are better.  I don't always have them so it must be withdrawal.  Ready for them to go. 

 

[[dr...]]

Sofa-I've decided to make my 5000th post a rant. 

 

I'm damn tired of this.  Even though I'm not in a wave right now I still feel very unwell doing this day after day.  I feel like I am on the edge of a panic or full blown wave at most times.  I am exhausted even on good days.  I lay in bed and just try to maintain a quiet for my brain. I geel so unhealthy and out of shape. At 17 months I feel like I'm doing less than six months off. Probably not true but it feels that way. Going to see my friends perform reminded me of how much of my life I have lost for now.  I was out at 10pm and couldn't keep my head up.  Even what I consider a good day absolutely sucks in relation to what I should feel like.  This just plain old sucks. 

[[No...]]

Drew ... that sums it up ... "this just plain old sucks" ...

 

BTW ... happy birthday Monday ...

 

So much of this is just one day after another ... there was a long, long stretch for me where the clarity came back and I doubted so often that my body would come back as well ...

 

Felt like a disconnected blob ... felt I had a wasted Spring this year ... watched the days of Summer passing one after the other while I "festered" in this dump of a body ... and then a couple of weeks ago things started dropping off ... and I do not have a clue in hell why ... they just did ...

 

Well, I do have a clue ... it was time ... I had served my "sentence" ... I was finally being released ... no parole ... no half-way house ... no ankle monitor ... just a full and unconditional release ... 

 

And that time comes for all of us ...

 

Now there is the next little hill to climb ... and it is a little one ... when I am not dragging the baggage of this drug along behind me everything is a little hill ...

 

I am grossly out of shape physically ... I am very disconnected with my community ... one acquaintance said to me a couple of days ago, "what took you so long ... why didn't you speed things up" ... and for a couple of moments I was infuriated ... I wanted to put the him on his ass and stand over him and scream ... could have ... and it was that "could have" that brought a smile to my face ...

 

So I just said "I needed a bit of a vacation" ...

 

Two weeks ago that "could have" wasn't there ... today it is ... the body memory is back ... the silent confidence is re-emerging ... my body and I will enjoy the process of "getting back in shape" ... I will make old and new connections in my community ...

 

There is a feeling of quiet freedom creeping into my days now ... I think some call it pleasure ... I call it the sweet song of life ...

 

Rant on my friend ... we rant until we can sing again ... 

[[No...]]

Welcome Jackie ...

 

Good to hear from you Coop ...

 

Good to hear from all the Buddies here ...

 

Yesterday was not so "effortless" ... I think they call it a cold ... so I had a yuk and grump day ... nothing a box of Kleenex doesn't help along ...

 

Have a good weekend Folks ... we deserve one ... 

 

 

[[...]]

Again Coop I have missed you but I'm truly so excited for you to be doing so much better, this is so encouraging. I'm so grateful to you dear Coop, you are a very kind soul and deserve 200% wellness. Nova the same for you, incredible how things have turned around for you and I am constantly reminding myself of your healing after such treacherous suffering.

Drew and Sofa it is such a slog, keep ranting, I know it helps me to rant and rage. Sofa you have come this far, keep going. It is a huge mountain but you will make it and there is no turning back. Trudge through the sludge and end up at the rainbows end where happiness awaits. I understand your frustration Drew, this constant back and forth of crapness in varying intensity. After a difficult start yesterday at work with some tears due to having to go on a short course relating to a delicate and disturbing subject; I work for a NHS trust and have some mandatory training, this was the Safeguarding Children one and I was dreading it (not pleasant). I already don't watch the news etc as upsetting things seem to have more of an affect on us in WD, so to have to listen to this type of subject matter was hard. Anyway yesterday evening I felt almost 'normal' and I had not had much pain that at all. I even cleaned my kitchen and bathroom when I got in from work  Today it's back, the upper body and head squeezing brings me to tears sometimes (yes I cry a lot). I'm trying to push on and make my daughters bday cake with a pumpkin head that is filled with mush. She has gone to look at Edinburgh University today. I could not possibly manage it which frustrates and infuriates me, as Edinburgh is a beautiful historic city, however I went to York with her and that was incredibly tough but still successful. She was quite looking forward to the adventure though and it will be good for her confidence. Oh but how wonderful it would be to have had a weekend up there with her. My boy has gone out to play football (soccer) with his pals and asked me if I would be ok, guess what? I cried, he is so kind and reassures me all the time. At 15 years old he is the man of the house and such a lovely boy, I am blessed with my two. I know I mention my kids a lot but they are the ones travelling this with me, holding my hand and having to put up with not knowing how I am going to be each day, my crying, mood swings and all the other rubbish that goes with this. So I am home alone and at 'normal' times I would relish this time. Not so going through WD  I am ok though, can just about keep busy with my cake to distract from the sh1t show, doing it low and slow. Then I have to go to the supermarket ugh. I will make this cake with you in mind too Drew, for your birthday on Monday. Pity I won't be having any. Family will be coming to celebrate the bday girl. Now that's another story and not something I am particularly looking forward to. Hey ho onwards we go. Love to you all 

 

Sorry for the ramble..........

[[dr...]]

What beautiful words I read this morning.  Nova you are a true poet.  I am serious.  Your gift of writing and putting things so eloquently is amazing.  Thank you.

 

Marj-your words of support and thinking of having some pumpkin head cake w you brings a smile to me this am.  We are healing and as I've said for several years next year at this time it will be better.  It hasn't always been but from last year it already has. 

[[Si...]]

I'm in a full blown terrible wave. This is just about the worst I've felt since acute. I barely slept last night. It was only 5 days ago that I felt nearly finished with this crap. My wife keeps saying I get better after each bad patch, but I feel so hopeless that this will ever be over. There isn't anything to make me feel better. I can't believe after only one month of drug use that it did this to me.

[[dr...]]

So sorry to read what's going on w you sig.  You know your wife is right and the drugs don't care wether it's two weeks or twenty years.  Pure poison.  It's mind blowing that this can happen and nobody really acknowledges it which adds to the misery.  Ok...I can't go down that path as it changes nothing.    Hope you get a break soon.

[[be...]]

Morning all,

 

Drew- Hope you have a nice Birthday weekend.

 

Nova- I agree with Drew, you are a true poet..with feeling...I mean it..I can feel the words you write..real talent right there.

 

Coop, so glad you are feeling better. It feels good knowing we are getting out of the woods.

The burning leg pain I have had for two long years..but it is getting better..hope it's short lived for you.

 

All of you new ones here.A Big Welcome to you. Lots of good support here with good people.

 

Have the best day you can and remember..healing is slow..but it does happen.

[[No...]]

Siggy ... you are probably right ... there isn't anything to make you feel better right now ... so ... distraction ...

 

When it gets overwhelming and I lose my sense of this never ending ... when I feel weighed down with the suffering ... there wasn't a damn thing I could do about it ... so I just turned away ... perhaps frustrated, perhaps angry, perhaps just utterly fed up ... just turned away for a while and tried to get lost in something else ...

 

When this stuff revs incessantly the only thing I could "do" was to be aware of not making it worse than it already is ...

 

I often wished that it would stop with the "teasing" ... quit that back and forth stuff ... that feeling some better, then bam ... feeling some better then bam, again and again and again ...

 

But ... I could never talk it into behaving differently ... so I just turned away until it ran out of steam ... and it always did ... 

[[No...]]

Marj ... make a cake ... sometimes that's all we can do ... just be where we are and get through it as best we can ...

 

In time, all will be well ... 

[[so...]]

Thank you everyone!  Whether it's ranting from Drew, Siggy and Marj, or words of wisdom and encouragement from Nova, I know I'm not alone.  I need all of you so much.  Regardless of what stage we are all in, reassurance that we will eventually heal is what I cling to on a skinny rotten ledge with broken fingernails and beat up spirit.  You all keep me going and I am grateful.

 

Love, Sofa

[[so...]]

I have a new symptom.  It doesn't last long, but it's scary.  I was laying in bed trying to calm myself and, suddenly, it felt like I was laying on a vibrating bed!  The bed, of course, wasn't vibrating, it was me!  Has anyone else had this?

[[Si...]]

I have a new symptom.  It doesn't last long, but it's scary.  I was laying in bed trying to calm myself and, suddenly, it felt like I was laying on a vibrating bed!  The bed, of course, wasn't vibrating, it was me!  Has anyone else had this?

 

Yes, I've had the vibrating. I've had pretty much every symptom you can have.

[[so...]]

Thanks, Siggy.  How long did the vibrations last?  Do you still have them, or have they gone away? 

[[so...]]

Missed my grandchildren's soccer games.  Withdrawal sucks big time.  Just couldn't do it.

[[No...]]

Sofa ... the vibration stuff can be very weird and scary ... for quite a while I had often just as I was falling asleep ... jolted awake ...

 

It gradually petered out ... just like all the rest of this weird stuff ... I have often thought it has something to do with a release of energy ... some kind of weird relaxation response ... and at other times it would just show up for while and then move on ... who knows ...

 

Sorry you missed the soccer game ... this stuff sucks sometimes ... all too often really ... 

[[Si...]]

The vibrating stuff was around closer to when I was in acute. I haven't had the vibrations for a while.

 

Right now I just have this very sick feeling in my head and all the way down my spine. I can't even really describe it I don't think. It's much like that adrenaline feeling in your stomach when you're on a roller coaster, but instead of in my belly it's in my head and spine. But it doesn't stop like the adrenal shot does. It's been with me all day today. I seriously just feel terrible. I'm so worried that this will never end. I see so many success stories of people being healed at under a year. Really takes the wind out of my sales.

 

I guess everyone else is doing ok today. Doesn't seem to be many people on here right now.

[[so...]]

Siggy, I feel discouraged reading how people healed in 7 months too.  Grants stick is one who healed in 7 months and credits her recovery to working out 2.5 hours every day!  I can barely get in and out of bed to go to the bathroom most days.  I'm doomed if exercising is the key to recovery.  I do pace in my backyard, but I would hardly call that aerobics!  I even downloaded the book she recommended called "Sparks."  Oh my lord!  Reading the book about all the things I'm not doing to help grow and develop new neurons gave me a headache!

[[Si...]]

Siggy, I feel discouraged reading how people healed in 7 months too.  Grants stick is one who healed in 7 months and credits her recovery to working out 2.5 hours every day!  I can barely get in and out of bed to go to the bathroom most days.  I'm doomed if exercising is the key to recovery.  I do pace in my backyard, but I would hardly call that aerobics!  I even downloaded the book she recommended called "Sparks."  Oh my lord!  Reading the book about all the things I'm not doing to help grow and develop new neurons gave me a headache!

 

Yep and now my wife was getting sleepy at 8:30pm and went to bed! I barely slept maybe 3 hours last night. You'd think I would be the one passing out early. She slept probably about 9-10 hours last night. So depressing. That and now I'm up by myself. Well me and the cats.

[[so...]]

Frantastic, not Grant Stick, grrrr autocorrect.

[[Si...]]

Frantastic, not Grant Stick, grrrr autocorrect.

 

Ha yeah! I actually knew who you were talking about.