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Setback Improvement - Will continue to update


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Yes I have reached out to Jenn as well when I was stuck in bed and had to leave my home to move into an apartment after my husband left me. She basically told me to just muster up whatever strength I could and just get in the car. I waited for a small window that I was getting after lunch time each day and I did just that. When I got to my new place I started making some progress to the point I was able to take short walks, do small chores and cook small meals without any assistance. I was very careful and rested several times during the day. But the beginning of this month I was slammed back down to not being able to take care of myself or my child. So last week I hired a personal assistant. My daughter is 13 as of last weekend so she pretty much can do for herself but she still needs me. Other than hiring this lady I had only a couple of relatives that would run an errand for me from time to time. I laid in bed helpless alone every day praying that I didn’t fall or get in serious trouble. Absolutely terrifying to be in this situation. But I made a choice to stay positive. To help others on here from my bed. If I can get out of my bed prison before then I can do it again.  :thumbsup:

With this setback, I’ve noticed I have a shift. I now get morning dread followed by morning waves and night waves at bedtime. Evenings are my windows. That’s when I get up to see how much my walking has improved.

Your posts made me cry too…with joy and confirmation.

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LadyDen,

 

Please know you are an absolutely amazing human being. The fact that you are dedicating so much of your own time even though you are still suffering to give people hope and words of kindness instead of spreading more fear is amazing. My hat goes off to you, truly. I am also a mom, my kiddos are still toddlers though and its terrifying to feel so disabled, although I cant even begin to pretend that I was ever in a bedbound position - I have been mentally hit with symptoms (terror, fear, anxiety, severe depression) way worse then any physical symptom, which is probably what makes it easier for me to "push through". But ultimately my kids are my reason for everything.

I'm sorry to hear about your husband and the struggle that this move and such has been for you, I pray you get a much deserved LONG window very very soon!!!!! Good for you for hiring help and doing what you need to do to best care for yourself and your daughter, I'm sure that wasn't an easy choice to make.

How long have you been off for? (Again if you don't mind me asking, at any time feel free to respond if im prying).  :smitten:

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Ambience was the only medication I took. I was on it for 7-8 years including the tapering. I was on varying degrees over the years with the highest dosage being 12.5 mg CR taken for nearly 2 years. So I learned to taper from here on BB. I’ve been off for 16 debilitating months.
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Well it's been 4 weeks and 3 days since the first dose of Doxy and I'm also 23 months off benzo's today!

I have continued to have really good days. Some minor lingering symptoms here and there that seem to randomly pop up - some mild anxiety, issues sleeping here and there, still some gut issues but otherwise everything symtpom wise has dissapeared. This all happened right within the time frame that everyone I spoke to said it would happen. From the days of pouring over old stories and experiences on here and on the Facebook groups the "average" setback seems to last a few weeks, to a few months, with the most common timeframe from those I have spoken with being 4-8 weeks. Obviously like anything in this there are exceptions to this, and it probably helped that I only took two days on the antibiotics but I would definitely consider myself 95% again.

 

I still have some major major fear of the future and all of the what if's in regards to ever needing future antibiotics or meds. But I'm working with a wonderful psychologist that's local to me as well as someone well known within the Benzo community to try and get my mindset and fear in check so that it doesn't continue to rule me like it is right now.

 

Today's big win is that last night I finally had a solid 6 hour stretch of sleep that I haven't had since this all started!!! I'm so thankful!!!

 

Is this just a window? Maybe. But I'm going to treat it like a door and walk through and close this chapter (and major road bump) in my healing journey.

I hope this experience will be helpful and motivating to anyone going through a medication setback in the future to know that you too will come out the other side ok and that if you can hang in there alot of medication setbacks are short lived.

 

Hang in there everyone, keep fighting the fight!!  :smitten:

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Oh man I needed this today.  Thank you!  I am day 5 of a terrible setback worse than the worst of acute.  Hoping I heal as fast as you are healing!
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Oh man I needed this today.  Thank you!  I am day 5 of a terrible setback worse than the worst of acute.  Hoping I heal as fast as you are healing!

 

JBen,

 

I am so happy that my experience could give you a little bit of encouragement!

 

I'm still feeling around 90-95% better so I'm very hopeful that this trend continues and this really is the end of this setback.

 

Do you mind me asking what med set you back? Im so sorry you are going through something similar.

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I’ve been taking a nasal corticosteroid spray since april.  It started causing some issues so I stopped it.  3 days later i was in hell and still am 8 days later.  I feel I have gone way backwards now.  Only time will tell on how bad this will be.  People are telling me it is a cross-tolerant drug to benzos.  I dont exactly know what that means or why I was able to take the spray so long without problems.  The moment I stopped everything went crazy, just crazy.
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Those damn steroids. I'm so sorry that you are suffering like this! Now I could be very much out to lunch here, but I feel like with everything I've read, that many peoples setbacks seem to be alot quicker to come out of when the med they were taking wasn't taken orally. I assume its because it doesn't have the opportunity to build up systemically in our systems the same way that it would if we had been taking a much larger dose orally? Either way, I hope you come out the other side of this very very soon!!!

 

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Just wanted to update as it's been a week, I've had some random mild anxiety here and there, some light inner vibrations a few evenings and maybe some physical symptoms (headache, ear/tooth pain) but then again, those could be "normal" too, and now I'm just reading too much into every symtpom, imagining it's Benzo related. But I would otherwise still consider myself 90%+.

So thankful this setback was short liked.

Now I'm working on my fear of the future and fear of never actually healing to how I was before and always having sensitivities.. as many buddies and friends in this have told me, I can't let fear rule me and I'm genuinely trying to change this with the help of someone well known in the Benzo community as well as my local psychologist.

 

I hope everyone has a long amazing window today!  :smitten:

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  • 2 months later...

Well its been 3 months and 11 days since the setback hit - I know earlier on I has proclaimed myself as done with this setback but that wasn't exactly how things have gone.

 

The good news:

My symptoms have improved DRASTICALLY. The month of November and December consisted of windows (completely symptom free) and waves, now when I say waves I don't mean the terrible cant function all the nasty symptoms return type waves. They have all been mild and manageable, I have been able to live my life 100% normally and try my best to just ignore any lingering symptoms.

 

The bad news:

I suck these days at acceptance. I was fully expecting to feel 100% healed by this point and I'm just not there yet and this is incredibly frustrating to me. Now I've reset my timeline and am hoping to be fully back to my old self by 5-6 months post setback and if it happens sooner then I will be absolutely thrilled. Again I really want to reiterate to anyone reading this that when I do have symptoms they are more then manageable and its hard to remember how far I've come from the first month of this setback when I literally thrown back into a state worse then acute, I honestly didn't know how I was going to survive it, but I did and I am leaps and bounds healthier in comparison.

 

All of this to say I'm not 100% healed but I am getting there, there were definitely some bad days in between but I would say the worst of it was gone within the first 5 weeks.

 

If you are currently dealing with a setback please know that things will improve and that you WILL get better, just hold on!

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  • 3 months later...

I just wanted to come back again and update, incase down the road there are others who are dealing with AB or med induced setbacks that don't completely "recover" within a few months. I'm now 7 months and 8 days out from my setback last fall. I'm sad to report that I am still not back to being completely symptom free but things have continuously improved. Mostly minor lingering symptoms here and there, life is very manageable. I'm returning to university by the end of this month (I've been off since my setback hit just because I didn't feel it was manageable to deal with on top of the setback), I'm spending time with friends again, I sleep great and I essentially live my life normally. Unless I told you that I was still experiencing some symptoms here and there you would never know. My wish and "goal" would be to be completely recovered by my 3 year benzo free anniversary this coming December.

 

I once thought that going through benzo WD would permanently alter my life, and although it changed me and my life in aspects it didn't have anywhere near as a profound effect on me as healing and then being setback has had. To say this setback has been severe is an understatement, it by far trumps the 13 months of my initial WD and had changed me, my views and beliefs more then I ever thought possible. I know some people say that they will return to things like caffeine and alcohol again and I once thought I would as well but I can confidently say now that I will never intentionally touch something again that could potentially harm me - unless for life saving reasons (like an AB or medical procedure).

 

BUT it does get better! It gets so so so so so so so so so so so much better! even a few months ago I would have absolutely longed to be where I am today. Life is good, even with the minor lingering symptoms! I healed once before and I know I am so close again. If anything this has just strengthened my belief in our bodies innate ability to heal itself and to overcome anything.

 

Hang in there, we will all get through this!

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  • 2 months later...

Well, we've progressed a couple more months and ive come a damn long way! I'm still symptomatic but this past month I've felt better then I have to date. When the symtpoms/waves come they are much milder and the good days are REALLY good

Most of the time I completely forget about WD.

 

I still have alot of fear of the future and am constantly scanning for threats but man oh man has life gotten better. I've returned to school/work and I've been able to handle a massive amount of stress without repercussion. Ive started being less restrictive with my diet and just making sure my main goal is to eat as healthy as possible and I've even allowed myself to have small amounts of sugar for the first time in over 10 months. And guess what? My body handled it all.

 

Did I ever think this setback would still be effecting me 10 months later? God no! But am I seeing massive improvements and has my life gotten so much better in every possible way?? YES!!!

 

I've just decided it's not worth being frustrated anymore over how long this is taking. It's going to take as long as it takes and in my core I truly believe we all heal completely. Some just take longer then others. I spoke with baylissa recently and she reiterated this and so much more. So for now, I'm going to let go, and just trust the universe.

 

 

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Hey Itsmytime,

 

Glad to read this post. Glad to hear you're moving along.

 

Gaining confidence is important. It only happens in time, and with a little trial & error.

 

I thought I was healed starting the end of June this year. I had recently gotten through a bit of a rough wave. I felt better than ever - Felt healed. Thought I had it licked.

 

Therefore I decided to golf. It felt fantastic. I finished all 9 holes. It went so well that I went for another day of golf with just a day break in between. Again, it went well. ... Then about two days later I started to have symptoms flare up again. It's been almost two weeks and I'm still resting a lot more - most of the day, and kicking up self care until it passes.

 

In hindsite, I have not done that much physical activity for that long in the last three years or more. The only thing I can compare it to is when we moved in 2020 and I was at 18 months back then. That move took me awhile to pull myself out of too. I walk in nature daily. Was doing about 5 miles most days handling it with no issues, but that's not the same as 3.5 hours of hitting several times at a little ball for 9 holes.

 

You are right. It's not worth being frustrated over how long this all takes.

 

You are doing well. Back to work and school. This is great news! Please still be sure that you set aside time daily for self care.

 

I now know that even when I'm feeling superb, it is still a good idea to maybe hit just 3 out of the 9 holes, or something to that affect and just enjoy riding around on the golf cart with my husband in the beautiful weather in my golf skirt, pink polo and pink visor.  8)

 

The plan was to just do that anyway and not hit all 9 holes, but I was feeling good & having fun, so I went for it. It can get hard to gage and the line of "too much" can get blurry, especially not being symptomatic in the moment & things flare up later.

 

I'm not in acute or anything even close, but I still can have some rough patches where my butt is in the chair more than I want it to be, and I'm wondering: "how am I in a chair today ? & I was on a golf course just two weeks ago?" . 

 

I had actually been steering clear of the forum because I was feeling better, but when times get tough it's okay to get support. I just do my best to steer clear of subject matter on here that I know is too much for me.

 

Glad you're moving along. You have been through a lot. Keep doing self care.

 

- Fortitude

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Hey Itsmytime,

 

Glad to read this post. Glad to hear you're moving along.

 

Gaining confidence is important. It only happens in time, and with a little trial & error.

 

I thought I was healed starting the end of June this year. I had recently gotten through a bit of a rough wave. I felt better than ever - Felt healed. Thought I had it licked.

 

Therefore I decided to golf. It felt fantastic. I finished all 9 holes. It went so well that I went for another day of golf with just a day break in between. Again, it went well. ... Then about two days later I started to have symptoms flare up again. It's been almost two weeks and I'm still resting a lot more - most of the day, and kicking up self care until it passes.

 

In hindsite, I have not done that much physical activity for that long in the last three years or more. The only thing I can compare it to is when we moved in 2020 and I was at 18 months back then. That move took me awhile to pull myself out of too. I walk in nature daily. Was doing about 5 miles most days handling it with no issues, but that's not the same as 3.5 hours of hitting several times at a little ball for 9 holes.

 

You are right. It's not worth being frustrated over how long this all takes.

 

You are doing well. Back to work and school. This is great news! Please still be sure that you set aside time daily for self care.

 

I now know that even when I'm feeling superb, it is still a good idea to maybe hit just 3 out of the 9 holes, or something to that affect and just enjoy riding around on the golf cart with my husband in the beautiful weather in my golf skirt, pink polo and pink visor.  8)

 

The plan was to just do that anyway and not hit all 9 holes, but I was feeling good & having fun, so I went for it. It can get hard to gage and the line of "too much" can get blurry, especially not being symptomatic in the moment & things flare up later.

 

I'm not in acute or anything even close, but I still can have some rough patches where my butt is in the chair more than I want it to be, and I'm wondering: "how am I in a chair today ? & I was on a golf course just two weeks ago?" . 

 

I had actually been steering clear of the forum because I was feeling better, but when times get tough it's okay to get support. I just do my best to steer clear of subject matter on here that I know is too much for me.

 

Glad you're moving along. You have been through a lot. Keep doing self care.

 

- Fortitude

 

Fortitude,

 

Thank you so much for your kind words and advice. I couldn't agree with you more on everything you said.

 

Like you, over exerting myself definitely throw me through a loop. Even stress, I can manage it but if it's severe it will still revv me up. I also need to be cautious of how much I push myself when I'm feeling good because it's easy to overdo it for sure.

 

I'm really sorry to hear that you felt healed and then were tossed back into it again, that's got to be one of the most frustrating experiences in all of this. I fully believe we all heal, without a doubt in my mind, so we just have to hold on and know that we are very close. In that same breath, I am really happy to hear that you are having periods of time where you're feeling really good like that! That's so beyond deserved.

 

Reading your signature, there's alot of similarities in our experiences. Thank you for reaching out, I can't tell you how much I appreciate your support.

 

How have you been feeling? Any better?

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Itsmytime,

 

Thank you for asking.

 

I had 4 days where I was feeling really good again. Thought I was through it. Now I have this sore throat. I've taken 2 at home Covid antigen tests and they are negative. I'm thinking about getting a PCR test. We have a bunch of Covid home antigen tests on hand, but maybe I should do the PCR test. I've never had Covid. Neither has my husband. It's just the two of us. I don't work because I've never been able to in my withdrawal journey, & he works from home.

 

I've been walking out in the yard, or on our street some and getting out of the house once a day for a ride (as a passenger). I have not drove myself in 3 weeks. It's just not worth it until this passes. I'm spending most of my day in the recliner watching movies and such,  waiting for this to pass. Trying to be calm.

 

I just have the stupid sore throat. It's on one side & feels like I'm about to get tonsillitis.I get tired easily, some benzo flu here and there & a little bit of wobblyness here and there. This is how the sore throat thing has been throughout my withdrawal. The sore throat is on one side. With each episode of me having this, the side of the throat that is affected can change. I think I get it once every other month or so or less.

 

If I have Covid it would literally have to come from having a conversation outside in the yard with a neighbor, or from my dog that went to the groomer. I'm spending most of the day worried that I have Covid because it's going on day 3 with the sore throat.  We don't have kids. No one comes into our house. Cases are low where i live.. I know it doesn't matter about cases because they are majorly under reported, but we don't go anywhere and have not been for over two years because of this pandemic. IF we are out in public, we wear masks. We haven't even been inside a store in a month, and we rarely do that. We still curbside everything. Outside of people i know online, within our friends/family/clients, we don't even know anyone who has had Covid since the end of April,  but I know it's still everywhere. Maybe I just have a regular cold?? Like I said so far it's a sore throat, benzo flu on & off, and being tired a bit, but I'm always tired on & off throughout withdrawal.

 

I am so sick of living with withdrawal simultaneously with this pandemic.

 

The other symptoms that golfing brought on (doom, DR, weakness) seem to be gone for now, but who knows. It changes it seems.

 

I'll keep ya posted.

 

 

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