20 months and counting.

[[ja...]]

Hi everyone.  I'm so glad for this group.  We are apparently a minority,  but I wonder how many just leave when they don't improve on an earlier timeline?

It seems I was constantly noticing improvements until 10 months post taper, and since then not so much.

I'm in a massive wave right now; most serious effect is insomnia (getting 2 hours a night at least 70% of the time....many days in a row), and akathesia....  (those long hours awake feeling as if I was plugged into an electric socket).

I'm riding it out best I can, through prayer and self care and setting boundaries.   But I see my life slipping past.  I feel pretty  crappy going about my day on 2 hours sleep.  No matter how loving and positive I am.

My diet is excellent.... I spend lots of time outdoors... I'm not working a regular job... so I consider myself lucky there.  I'm also turned 70 this year and am wondering  if age is a factor.

I'm a long way from beaten.  I'm clearly in protracted and am holding on to hope that the big healing comes between my second and third year.  

I'll be so glad to connect here with others.  I don't post often, unless I'm having a very good day.... I don't want to scare the newbies...

[[Co...]]

2 hours ago, [[j...] said:

Hi everyone.  I'm so glad for this group.  We are apparently a minority,  but I wonder how many just leave when they don't improve on an earlier timeline?

Before we moved to this software, there were 1,284 members in the Protracted group. Now, some of those will have joined out curiosity to access the content, but it demonstrates that although those experiencing protracted withdrawal symptoms are a minority, it is a sizeable and important minority.

In the near future, we will find ways to make the old members better aware of this new protracted withdrawal support space. Then, members of this group should grow quite rapidly. But even as it stands, in just 24 hours, 26 members have joined this group. And unlike before where they were incentivised to join simply to view the content, they can now view the content without joining. So, going forward, membership of this group should be more properly representative of true interest.

[[de...]]

2 hours ago, [[j...] said:

Hi everyone.  I'm so glad for this group.  We are apparently a minority,  but I wonder how many just leave when they don't improve on an earlier timeline?

It seems I was constantly noticing improvements until 10 months post taper, and since then not so much.

I'm in a massive wave right now; most serious effect is insomnia (getting 2 hours a night at least 70% of the time....many days in a row), and akathesia....  (those long hours awake feeling as if I was plugged into an electric socket).

I'm riding it out best I can, through prayer and self care and setting boundaries.   But I see my life slipping past.  I feel pretty  crappy going about my day on 2 hours sleep.  No matter how loving and positive I am.

My diet is excellent.... I spend lots of time outdoors... I'm not working a regular job... so I consider myself lucky there.  I'm also turned 70 this year and am wondering  if age is a factor.

I'm a long way from beaten.  I'm clearly in protracted and am holding on to hope that the big healing comes between my second and third year.  

I'll be so glad to connect here with others.  I don't post often, unless I'm having a very good day.... I don't want to scare the newbies...

@[ja...]

So sorry you are in a wave currently.  Insomnia is the pits and lack of sleep always seems to make things feel worse.   I would imagine, as is often the case, after this wave passes your baseline will be improve.  Do you notice improvement after you have a wave?  It sounds like you are doing a lot of things that help you cope with the waves.   So glad you posted.   I understand about not wanting to scare the newbies!    They don't really need to know what could be lurking, but at the same time it is important for the Long Haulers to have a place for support.   

[[Na...]]

Sorry you're going through this janiceh.

One of the hardest things for me when I'm in a wave is to remember that it will eventually pass.  When I'm in a setback it seems like I've always been and will always be right there.

But, eventually it will pass. It is hard to believe that when you're in the pit sometimes.

Hope you get to feeling better soon.

 

 

[[ja...]]

Hey thanks so much guys..... looks like I'll be mostly checking in here...  I'm struggling a bit to remember how to find us, but it'll come....

[[ca...]]

On 23/08/2023 at 07:24, [[C...] said:

they can now view the content without joining.

@[Co...] hmm sorry, I had to join to view the content or did I miss something?

[[Co...]]

7 hours ago, [[c...] said:

@[Co...] hmm sorry, I had to join to view the content or did I miss something?

It is possible that how members can access groups might change (or change on a group by group basis). The permissions in this regard are not as granular as might wish, so we might decide on a different compromise yet.