1 year off update!

[[Kl...]]

1 Year update!

 

Well it's actually almost 12.5 months now. Month 12 was actually the worst in a long time.

Month 10 and 11 I was starting to feel quite good most of the time and went to some concerts

and was starting to enjoy myself a lot more. It was discouraging to go backwards, I started

getting sx back that I hadn't had in months and the intensity was worse.

 

I had an amazing window day right after 1 year at the start of 13th month,

then went into a horrible week long wave with acute like intensity and the worst I've had in

5-6 months. Since then things have been better this last week.

 

I'm not recovered yet unfortunately, but I'm feeling more and more like myself when not having

symptoms. At times I can have fun and enjoy life, laugh, joke around. The waves can still be

very uncomfortable though so it's still a challenge. It's been difficult to know that after a year

I'm still not done, but I just have to keep going. The worst is surely over now. I am connected

to the world 99% of the time now

 

In spite of how rough things have been the last 6 weeks or so I started back at full time work

on Sept 5th at my office and have only taken off a half day so far. The days are going quicker

and it keeps my mind off wd a lot more. I have had some very hard days still though. 4 months

ago I took time off work, I couldn't even get through 2 hours without crying and going home so

things are definitely improved.

 

The window days I've had have been so close to 100% so I know I'm getting closer and closer.

On those days I barely think about this at all and think about normal things in life.

 

After 2 months of calm nights and mornings, about 6-8 weeks ago they got toxic again. I think

they may be just starting to get better again slowly now.

 

I've had almost every symptom you can think of with the exception of seizures.

 

 

Sx remaining:

 

Anxious wakeups around 4am (can usually get back to sleep)

nerve pain / anxiety / tingling when I wake in bed around 4-5am (was gone for months)

Burning skin (getting less often now)

Eye muscle pain, got worse over the past couple months, but vision is getting closer to normal

Feeling unwell / terrible at times

Some GI stuff at times

Music loops (mostly when in waves)

Head pressure (new this last month)

Tinnitus (doesn't bother me that much, mostly notice it in bed)

Restlessness / nervy feelings (fairly often, all related to the nerves I'm sure)

aches and pains in various places

Depression in waves here and there

 

Most of these are in waves that are shorter and less intense now, most waves are 30-60 mins but I may get 4-8 of them in a day.

 

I'm focusing on the 14-15 month mark now since it seems to be a very common turning point. As

hard as it and as far off as it sounds when you are going through it, the truth is that I've done

12.5 months and it's only a couple months away. It can't get much worse than what I've been

through or survived already so I will win this fight!

 

Keep on fighting buddies, we have only one place to go and that's through this and out the other

side!

 

 

 

My sx graph so far.. as you can see the 10 month wave has not been kind to me..

 

https://imgur.com/q4IRXQM

 

 

 

[[te...]]

Wow Klungo you made it to a year! Congratulations to you! Sorry you continue to have such nasty waves. But you have such a great attitude and you are doing a great job! Keep thinking about the improvements and take heart in those. I am having a tough week myself because I am so sensitive to stress. Last night I only slept 3-4 hours, which is bad for me and makes me feel like I haven't come so far. But I know I have improved so much and have to remind myself. This is such a long slog. Stay strong friend. We'll make it through.

[[Kl...]]

Wow Klungo you made it to a year! Congratulations to you! Sorry you continue to have such nasty waves. But you have such a great attitude and you are doing a great job! Keep thinking about the improvements and take heart in those. I am having a tough week myself because I am so sensitive to stress. Last night I only slept 3-4 hours, which is bad for me and makes me feel like I haven't come so far. But I know I have improved so much and have to remind myself. This is such a long slog. Stay strong friend. We'll make it through.

 

Thanks Tee, it's a long slog for sure. Just when you think you might be there something comes back. I can't wait to feel calm and relaxed all the time again.

 

Keep on fighting!

[[Co...]]

A long slog.  yup.  Congrats, Klungo.  A great accomplishment - a whole year, and you've handled it with a level head and positive attitude always. 

 

Almost there! 

[[Ni...]]

Well done Klungo... great to hear your good news 

[[co...]]

Great update Klungo! You're moving forward even if only on a trend line.. onwards and upwards (or downwards on a benzo sx graph)!

 

[[Kl...]]

Well done Klungo... great to hear your good news 

 

Thanks NightWatch! How are you?

[[Kl...]]

Great update Klungo! You're moving forward even if only on a trend line.. onwards and upwards (or downwards on a benzo sx graph)!

 

Thanks Colley, any improvements your way? I hope things are getting better, for all of us!

[[co...]]

Weeeellllll... not much to report. Still alive so that's a positive?!

[[Kl...]]

Weeeellllll... not much to report. Still alive so that's a positive?!

The most important thing for sure.. surviving is no.1 priority!

[[Ni...]]

Well done Klungo... great to hear your good news 

 

Thanks NightWatch! How are you?

 

I've had increasing periods (hours, not days) of feeling "normal" or more "me" lately Klungo. The other morning I had a bit of a hangover from oversleeping for an hour! Never expected I'd be making that 'complaint' - lol!

 

Cautiously 'good'; you're flying it - well done again

 

[[Kl...]]

That's great to hear, good luck and hope you continue to get better quickly.

 

I really feel close to normal when not having sx now. I feel like I'm close, but the sx keep coming. Hoping they start to really fizzle out soon.

 

Stay strong!

[[Sl...]]

Weeeellllll... not much to report. Still alive so that's a positive?!

Colley,

How is neurofeedback going for you? I just started it....

Blessings,

Catherine

[[Ni...]]

That's great to hear, good luck and hope you continue to get better quickly.

 

I really feel close to normal when not having sx now. I feel like I'm close, but the sx keep coming. Hoping they start to really fizzle out soon.

 

Stay strong!

 

The bit of "me" I miss most at the moment is my own "say-so" - the ability to take charge and command my own doings; you know, that sort of inner, confident self-discipline essential to pulling things into shape, cracking the whip as it were and "making things happen"...It seems that bit of me is still "offline"...

 

I was wondering if you had or have had anything similar and if so how you are doing with it?

 

Cheers

[[Kl...]]

That's great to hear, good luck and hope you continue to get better quickly.

 

I really feel close to normal when not having sx now. I feel like I'm close, but the sx keep coming. Hoping they start to really fizzle out soon.

 

Stay strong!

 

The bit of "me" I miss most at the moment is my own "say-so" - the ability to take charge and command my own doings; you know, that sort of inner, confident self-discipline essential to pulling things into shape, cracking the whip as it were and "making things happen"...It seems that bit of me is still "offline"...

 

I was wondering if you had or have had anything similar and if so how you are doing with it?

 

Cheers

 

Yeah the confidence part is coming back slowly. I feel a bit like I'm autopilot a bit, just trying to pass the time til I heal. I'm slowly finding that I don't think twice about things, however with sx so random it's still hard to make plans sometimes. It's getting easier to ignore and distract as the sx get a little easier again finally.

 

You are at what, 14 months now?  do you still have many sx? Did you have physical stuff?

 

Cheers!

[[co...]]

@ Sleepless - Neurofeedback is interesting. Too early to tell but I think I'm getting some sort of benefit. I'm doing sessions #9 through 12 this week. I'm doing 4 a week until I feel better...

[[Ni...]]

That's great to hear, good luck and hope you continue to get better quickly.

 

I really feel close to normal when not having sx now. I feel like I'm close, but the sx keep coming. Hoping they start to really fizzle out soon.

 

Stay strong!

 

The bit of "me" I miss most at the moment is my own "say-so" - the ability to take charge and command my own doings; you know, that sort of inner, confident self-discipline essential to pulling things into shape, cracking the whip as it were and "making things happen"...It seems that bit of me is still "offline"...

 

I was wondering if you had or have had anything similar and if so how you are doing with it?

 

Cheers

 

Yeah the confidence part is coming back slowly. I feel a bit like I'm autopilot a bit, just trying to pass the time til I heal. I'm slowly finding that I don't think twice about things, however with sx so random it's still hard to make plans sometimes. It's getting easier to ignore and distract as the sx get a little easier again finally.

 

You are at what, 14 months now?  do you still have many sx? Did you have physical stuff?

 

Cheers!

 

Yes I find that too. But I'm still missing the "Oomph"  - the sort of self-propulsion or "can-do" from which confidence derives, if that makes any sense.

 

I'm at 13.637 months Updated the signature thingy over the weekend cos "12 months" was soooo last season - lol.

 

Yes - physical - I was hit very hard with muscle atrophy and hip flexor trouble, lost a huge amount of conditioning, weak core; the other Big Four were chronic insomnia with agitation; gut signalling weirdness (gut-to-brain) tinnitus and agoraphobia - each thing seemingly keeping the other things going - like a well-constructed vicious cycle.

 

All of these are coming in to land now alright - but we all know enough to know that expectations must be tempered and "managed".

 

How is your mental stamina? Are you back up to full capacity?

 

 

[[Kl...]]

 

 

Yes I find that too. But I'm still missing the "Oomph"  - the sort of self-propulsion or "can-do" from which confidence derives, if that makes any sense.

 

I'm at 13.637 months Updated the signature thingy over the weekend cos "12 months" was soooo last season - lol.

 

Yes - physical - I was hit very hard with muscle atrophy and hip flexor trouble, lost a huge amount of conditioning, weak core; the other Big Four were chronic insomnia with agitation; gut signalling weirdness (gut-to-brain) tinnitus and agoraphobia - each thing seemingly keeping the other things going - like a well-constructed vicious cycle.

 

All of these are coming in to land now alright - but we all know enough to know that expectations must be tempered and "managed".

 

How is your mental stamina? Are you back up to full capacity?

 

I'm pretty good mentally, I've been back working for 5 weeks. Sometimes days are better than others. It's mostly been the physical keeping me down. Anxiety, Muscle / nerve pain, burning, Crappy mornings again. I think they are all slowly easing up, this last week was a huge improvement from the previous week which was terrible. Physically my energy is coming back a bit at last.

 

Sleep goes hand in hand with the anxiety, when that settles I sleep well, but it's been up and down too. From reading 14 months seems to be a common place for things to start clicking. I'll be happy to get into month 14, 12 & 13 have been challenging and rough at times.

 

[[Kl...]]

 

12.5 month update video

[[Ni...]]

 

12.5 month update video

 

Nice one Klungo! No comparison again - your 'flow' is hugely improved and it is very obvious, compared to previous videos, that your energy is well on the up. Way to go!

 

 

 

 

ps - has your cat got PAWS?! - lol

 

 

[[Kl...]]

Thanks man! Finally had a much better morning with no pain or anxiety today after months of crappier mornings.

 

Haha my dog likes to antagonise the cat. I didn't even notice until I watched the video after.

[[NY...]]

Thanks for posting the video Klungo.  It's really encouraging to witness your healing  .  WR

[[Kl...]]

Thanks for posting the video Klungo.  It's really encouraging to witness your healing  .  WR

 

Thanks NYC!

[[...]]

Your success is wonderful and inspiring to all of us.

[[Kl...]]

Your success is wonderful and inspiring to all of us.

 

Thank you, getting there.. just saw your post, looks like you are doing great! Good to see!