I'm worried that I won't get better

[Guest [Pf...]]

7 weeks ago, I would have said that I was on the road to healing.  I was 8 months off, and hadn't had a bad wave in a while.  I was still sensative in some situations, but that was improving, and my only question was how much things would improve and how quickly.  I certainly thought that by spring, I would be in good shape -- maybe not 100%, but good enough that symptoms would be mere annoyances.

 

Then 7 weeks ago thrusday, I started getting more sensative to stimuli.  My main symptoms are eye, forehead, and neck tightness, and light sensativity.  I found myself sensative to light in situations where I had not for a long time.  Even so, my frustration was that I could get this type of symptom this far out, but even so, it wasn't too too bad.

 

But that has continued for most of the last 7 wees.  This past Saturday, I woke with muscle tightness in the forehead, and that has continued for the past four days.

 

Now I am worried, that this is a permanent shift for the worse.  Does that happen?  Where people are slowly improving with windows and waves, and then this far out, just go down hill.  I am at a point that I thought I would never be at again.

[Guest [Pf...]]

The other thing -- I don't know if this is better or worse -- is how this wave compares to the last really bad wave, at the end of July.  That was the last time I felt like I could barely do anyting.  At that point, I also had muscle tightening.  But it would migrate.  It would start in the head and eyes, then move to the shoulder, then to the stomach, then to the limbs, but only be in one of those areas at a time.

 

Now it is almost always focused on the eyes, and forehead, and some in the back of the neck.  No real stomach bloating, and the limib symptoms are short-lived when I have them at all.

[[pi...]]

Pfeff,

 

I have the muscle tightening stuff as well.  It is stronger on the left side, my trapezius, and feels like my left eye is being pulled.  I have been doing stretches as well as heat on these muscles as they tend to spasm and tremor.  I have learned that I can live with it and do most of what I want to do.  Since these are my lingering sxs, I am willing to wait it out and let it be what it is. I continue to believe that these sxs will go away completely.  I remember reading a post by Pamster and she said that these issues were the last to leave.

 

pianogirl 

[Guest [Pf...]]

Thanks.

 

These were symptoms that I could live with until 7 weeks ago.  What i mean is that they wre not interferring with my life.  They were annoyances, the same way that a sore back or even a headach or cold is.  And I hoped that in time they would fade.  In fact, b/c I was doing so much exercise two months ago, I was not sure whether some of the symptoms were just the result of lifting weights and running.

 

But 7 weeks ago, the symptoms started to interfere with my activities.  And most recently, they have really limited me in a way that I had not been limited since the beginning of August.  I know losts of people seem to get that three month wave.  I do see some people here discussing a wave toward the end of the first year.  I am surprised that mine has lasted so long.

 

If I knew that it would go away, I would be able to manage.  I would just tell myself -- OK, one day you will be fine and forget about this stuff.  But now I am not so sure.  And have been tempted to go back on the pills, although I really hate that idea, and it would take a lot for that to happen.

[[pi...]]

Pfeff,

 

I know how you feel.  Last fall I was doing so much, I was bicyling several times a week sometimes up to 20 miles, exercising and basically ignoring the remaining sxs.  At the end of October I started getting the dizzy boaty feeling pretty badly.  I also started getting muscle spasms and terrible internal tremors.  I had to give up all my physical activity at that point.  It did make me very sad and I also wondered if I would ever get better.

 

I don't think there is anything surprising about this withdrawal process, I have learned to expect the unexpected. I guess I have a little voice inside me that says that all of this WILL go away and I am stubborn enough to keep  moving towards that day. I can't ever imagine putting another benzo in my body and I hope you can't as well.

 

BTW, I did my first short bike ride today since October.

 

pianogirl   

[[pa...]]

Hi Pfeff.  Rest assured this will all eventually leave.  Remember, wds wax and wane, windows and waves.  The are difficult and annoying, but they do leave and you will be healed.  It just takes time, but you will get there.  Been there, done it and HEALED!  Take care, Pattylu

[[Au...]]

pattylu,

 

are you healed, healed.  I mean, do you have to be careful about what you eat, avoid sugar, caffeine.  Can you have a glass of wine? Do you get the occasional wave? Or are you healed, over and done with... normal...and if so, how long did it take for that to happen for you?

[[sm...]]

I think everyone feels this way at some point, it sounds like a very common theme, but the other common theme that everyone comes out of it, even if it takes a while, eventually everybody heals completely, and the hard thing is just toughing it out.  Getting back on would only prolong the process, and then you would have to go through this all over again! Be strong:)

[[Ho...]]

Thinking you won't get better is probably one of the most common withdrawal symptoms there is.

 

It might take a long time to recover, but rest assured it DOES get better eventually. 

[[Tu...]]

You will get better Pfeff! You have helped out many on here and its time now that you believe in what you already know and that is that you will get better, ok buddy!

So hang in there, chin up!

   

[[Ga...]]

I'm in a similar spot. I think most people go through this. I am truly sorry you were hit with a wave that feels like a setback but you are still moving in the right direction. Try your best not to worry, however hard that might be. You will get better, as everyone does.

[[sc...]]

Hang in there Pfeff, its REALLY hard to see those tough times for what they are.  They certainly appear to be downward declines from which you will never rebound, when in fact they are mearly troughs in a series of peaks and valleys that are withdrawal.  You will go back up again!  The cycle may repeat again but ultimately the ups and downs will lessen and disappear.  Don't let that doubting benzo-mind cause you to question your healing.

Best, Scott.

[[Fl...]]

Thinking you won't get better is probably one of the most common withdrawal symptoms there is.

 

Exactly.

 

And on top of that, even though most people improve over time, the time factor itself starts to wear on you. I am pretty confident that I will eventually make a full recovery but I've been sick for over a year and still getting waves that make daily living seem like a chore. My waves don't last long theses days but it still makes me question things.

[[pa...]]

pattylu,

 

are you healed, healed.  I mean, do you have to be careful about what you eat, avoid sugar, caffeine.  Can you have a glass of wine? Do you get the occasional wave? Or are you healed, over and done with... normal...and if so, how long did it take for that to happen for you?

 

Hi August,  Yes I am totally healed.  I am on this site for my hubby, he's off 14 months now, still have wds.  I didn't know what happened to me, but then I found Ashton Manuel in 2010 when my husband was put on this junk, I then found out.  I was put on Valium in 80's, I went through hell and back, no internet in those days.  I c/t, I HEALED.  I did post a Success Story months ago, not for me to have pats on the back, but to give hope to all bbs.  It truly does occur and you get a great life again!  Hugs, Pattylu

[[Au...]]

Thanks Pattylu!

 

Pfeff- are u doing better?

[[pa...]]

Hi Pfeff,

 

I hope this makes you feel good - I know that one of the things I most lose track of (just me maybe) is perspective in this whole process.

 

I am only 5 1/2 months off - behind you - and just had ONE window a few weeks ago where the fog lifted for me.  Since then, I'm having times every 2-3 or 4-5 days where the fog almost seems to lift completely, but doesn't quite. And I still have all the symptoms you mentioned in your post. 

 

This is not a comparison of you to me, although I'd trade with you in a heartbeat. This is a comparison of YOU to a former you, earlier in withdrawal. Likely you had some worse symptoms earlier on that you don't have now.  I know how VERY TOUGH it is to remember that - and how tough it is to keep DOING THIS over and over, feeling like because it is so non-linear, it just seems like maybe randomly it's always going to be like this - where we can't plan on doing things, where we dont' know what to expect, etc.

 

But it won't.  I think it's STILL hard, although not logistically, but maybe emotionally? - for me to wrap my brain around the concept of waves and windows.  To me, if I'm improving, since I"m an analytical gal, I tend to expect more of the same.  When after a GREAT day, the next day is REALLY awful, I feel at a complete loss.  When I skin my knee, it stings for a few days, then scabs over, then itches, then the scab falls off.  It doesn't itch and scab over and then start to bleed and sting again -that makes NO sense. And if my body worked that way all of a sudden, it would feel VERY disconcerting.  It's no wonder recovery makes no sense to us.

 

But two things come to mind today that I hope you will remember. Actually - 3 things.

1)  You are better now than you were earlier on. That proves healing.  Nuff said.

2)  Bliss Johns outlines, chronologically, her symptoms in her book.  As I remember, only 2 months before her "open door", she had a return of symptoms not unlike that in early withdrawal - almost 2 years out. I'm sure she thought the same  -"Hell, if I 'm THIS bad, there is no way I'm close." In fact, however, it was simply another wave, and she WAS close.  She was almost done  - and then- she was done in another 2 months.  How can one explain this?  How can one explain a TOTAL worsening of symptoms over and over again?  Try to think of it like "seizures" that go on, randomly, but that then - stop. STOP altogether. This is what will happen to you. And while you feel as bad as you do now - or as insecure or unconfident, it really could end next month and be gone.  It's hard to fathom that, and I'm sure it was for her, too, but that is what happened.  It's truly non-linear.

3) This next concept is a bit more abstract, but here goes:  I've been pondering something lately, and that is this:  I think that WE as individuals characterize our healing by our PERCEPTION of our symptoms.  When we perceive them to be LESS, we think we are closer to healing. But those are just the symptoms we are conscious of.  In truth, even when we are feeling more like our old selves, I am not convinced that what is going on neurologically is any more improved than what is going on neurologically a week later when we are in a wave.  I think that what we PERCEIVE to be awful symptoms may feel bad, but may simply be symptoms affecting a part of our brain that REALLY bothers us - say in the awareness or sensory realm.  And yet, we can be sitting still and feeling fine a week later and experiencing the same amount of disruption in another part of our brain that is of the SAME intensity ,but in a part of the system that just doesn't bother us consciously. i.e. A small "seizure" in the sensory system affecting "lighting" may be VERY disturbing on an awareness level, but may not be any bigger a true disturbance than the SAME level of disturbance in the motor cortex which may only cause an eye twitch.  And almost nobody is truly bothered by a transient eye twitch. It sometimes helps me to realize that what might SEEM like a bigdamndeal  may be just "tweaks" going on that are no more a big deal than an eye twitch - but that just have to work themselves out.  The size of the perceived disturbance isn't necessarly at all related to the length left you have on healing.  All it takes is for the disturbance, however minor, to stop - and then it's over. 

 

This is what is going to happen for you and all of us.  And your great month 8 is an awesome plateau. So you're climbing the mountain again, but I find that awesome, because instead of being in a holding pattern, it's upward and onward for your brain. As great as month 8 was, I'm sure you wouldn't be happy with that state for the rest of your life.  Well - this is your brain's way of working on that.  It's climbing yet another state of health, and in that climb, there will be some lost footholds.  But the climb is still UP.  And you'll soon reach the top of the mountain.

 

Like another buddy said, you are a great help to so many on here. You DESERVE 100% healing - and that's what you will recieve. 

 

Hang in there. You are close.

 

:)Parker