12-18 month support

[[Co...]]

I guess when I imagine my mother at 88 I see a woman older, losing pieces of her life, maybe not being able to be supportive or understanding. I guess I see an elderly woman needing my supoort..  especially as I heal and have more to give. I haven't written a success story yet, but I know that I am better enough to help where I can. ....I do have to say, my mom didn't get any passes. She was suffering lung cancer and the debilitating treatments for it. She looked 95 not 63. 

.    I don't want to discourage any conversations about getting through this with family members. It takes its toll and I am now taking advantage of feeling better to repair those relationships. Lots of people couldn't 'be there for me'.  .We have said it so many times, " how can anyone understand this unless they have been through it". I am just trying to take the track of, ' now that I am better I want to be strengthening my family relationships'..  We have all been disappointed in our relationships with this....for me..  time to move on and make them better.  Just my opinion .... coop

[[dr...]]

Hi all... Just dropping in for a quick hi.  I didn't read back more than a page or two but I see coop is doing well and I hope others are too.  I was on vacation the last week. Went to hot springs and had my brother visit. Only one real bad day with a severe headache. 

 

I've been tracking all my symptoms (once a day) and I've noticed my days almost always alternate between good and bad.  Good being relative .  I'm trying to just stay super distracted.  One thing to another.  I just finished a model of the uss Arizona.  I'm practicing keeping my hands steady with all the painting.

 

I'm going to continue to just check n briefly and just take each day as it comes.  :smitten:

[[Sw...]]

You guys touch on a lot.  I have been just lurking on this post.  Mothers, well I will say a bit about mine.  She is 81.  In feb of 2014 she had a debilitating stroke.  She has been in the nursing home since then.  She is in New York state, I live in Florida.  I was well on my way of getting off psych pharmaceuticals when her stroke happened.  I went to assess the situation in March of 2014, help with her care, etc.  I went back at the end of May 2014 when she asked that both her children to be there so she could discuss "what would happen".  After this I jumped off of benzos and became pretty much non functional ~ could not go back to NY until I could handle it.  Which I finally did go back the first two weeks of August.

 

In May of 2014 I offered for her to come to Florida to live in my home and take care of her there.  She refused, does not want to live in Florida.  Several other people also urged her to go live with/near me, still refused.  This visit I did not make the offer, she is way to frail to travel down the street, much less Florida.  She has had another stroke sometime in the recent past and had a leg amputated due to poor circulation.  Her request for me now is to drop my life here in Florida, move to NY and take care of her in her house. 

 

We had a good relationship until my father died.  She remarried after that and at one point said she loved her second husband more that she loved her first husband (my father) and her children.  Wow, how do you deal with that one?

 

This trip to NY state I put her house on the RE market and am pondering what to do with her car.  Will probably buy it from her since it is not a protected asset.

 

So, me just telling a portion of the details of this whole situation makes me realize no wonder I feel like benzo flu with an energy drain. 

 

Thanks for lending an "ear" so I can muddle through this.  But on a bright note coop my BP is doing much better, no more waking up with a panic attack!

[[Fi...]]

Sweet Pea-- it's all in the details and I love hearing yours.  I have to give you laugh-out-loud points for your tag line- "No good deed goes unpunished."  I often feel that way!  Last summer I exhausted myself moving my mother from her house to an apartment, putting her house on the market and selling it etc.  When we got her all settled, I seriously thought I was well.  I could have written a success story.  Then I crashed into the worst fatigue ever for weeks on end.  It was only then I signed on here.  Maybe I would have crashed like that anyway, but I really felt like trying to take charge of this whole thing for my mother did me in.  That's why I just didn't want to step up and be in charge of her surgery.  I just want to protect myself this time for a little longer until I can get to 100%. 

 

I see you struggling along, just like I've been doing, and my heart goes out to you.  Eventually this will all be our rearview mirror and if we've done the best we can, we'll have no regrets. 

[[Co...]]

Hi all... Just dropping in for a quick hi.  I didn't read back more than a page or two but I see coop is doing well and I hope others are too.  I was on vacation the last week. Went to hot springs and had my brother visit. Only one real bad day with a severe headache. 

 

I've been tracking all my symptoms (once a day) and I've noticed my days almost always alternate between good and bad.  Good being relative .  I'm trying to just stay super distracted.  One thing to another.  I just finished a model of the uss Arizona.  I'm practicing keeping my hands steady with all the painting.

 

I'm going to continue to just check n briefly and just take each day as it comes.  :smitten:

 

....Drew....it's so good to see you here....Yep, distraction, distraction distraction. ....one headache in a week, not too bad?....Somewhere before 18 months or maybe right around 18 months my sx loosely morphed into a pattern like Sky's....a good day/bad day pattern. Now at the last week of month 21 it seems to be mostly good days, but like you say, "good is a relative term"....You are getting closer to month 18 and things seem to start shifting towards reliable healing somewhere around 18....give or take. For me it had definitely been month 21....huge difference....Glad you got a vacation. I hope being away from work for a little while helped ease sx and anxiety.

......thank you for dropping by with a post....you are one of us and I love knowing that you are good and keeping on with the keeping on....keep us posted as the mood strikes you. ..we think of you . Wishing you more good days than bad, no headaches and big sunbreaks....coop

[[Co...]]

SweetPea, so glad to hear that your bp is settling out. The physical sx can really get us spinning....so sorry that your mother has had 2 strokes and an amputation....so sad...

....hope you continue to feel more healing.  coop

[[No...]]

Drew ... taking care of the day as it comes ... yes ... that is what we do ... 

[[No...]]

Good Morning ... well ... still sticky and humid and non-refreshing ... and ... those experiencing the forest fires and smoke have it a lot rougher ...

 

Finished 22 months yesterday ... had forgot about it and didn't even think about it until this morning when I looked at the calendar ...

 

No head pressure and benzo belly for two days ... guess that was the weekend bonus ... 

 

Tried for a walk this morning but still felt it too "heavy" to be walking around outside ... probably just me, but why struggle when I can sit around and think about food ... 

 

Have a good Monday Folks ... 

[[Co...]]

Nova, .. yay for waking up without head pressure and belly issues... yep, being out in heavy humidity is not worth it and pretty exhausting. .....Hanging out and thinking about food seems right....what's happening in your kitchen today?

.......You sound good this morning Nova....Wishing you a good good day with sunbreaks and bread in the oven...coop

.

 

[[Co...]]

Nova....Congratulations on 22 months ..  well done with grace, humor, wisdom and compassion. Thank you for hanging on with us, your presence here has been a rock of reassurance and encouragement to us. ..we love you. ....I am following right behind you and your light has helped me stay on the road so many times. ....and thanks for the menus......coop

[[No...]]

Hi Coop ... bean burgers on the menu today ... soaked them last night and cooking them now ... will batch them up later ...

 

Hope all that smoke cleared out for you ...

 

As Beulah would say ... another day in paradise ... 

[[be...]]

Hi all... Just dropping in for a quick hi.  I didn't read back more than a page or two but I see coop is doing well and I hope others are too.  I was on vacation the last week. Went to hot springs and had my brother visit. Only one real bad day with a severe headache. 

 

I've been tracking all my symptoms (once a day) and I've noticed my days almost always alternate between good and bad.  Good being relative .  I'm trying to just stay super distracted.  One thing to another.  I just finished a model of the uss Arizona.  I'm practicing keeping my hands steady with all the painting.

 

I'm going to continue to just check n briefly and just take each day as it comes.  :smitten:

 

Hey drew, I missed you...well.. I should say your sense of humor.

Sometimes it's hard for me to read back for more than a page.

I see you're in the good day bad day  pattern. I had that for a while...now I don't know what I'm in.

You are definitely sounding better and I bet you never even noticed the healing.

 

The painting sounds like a nice distraction. Hope you have a good day.

[[be...]]

Good Morning ... well ... still sticky and humid and non-refreshing ... and ... those experiencing the forest fires and smoke have it a lot rougher ...

 

Finished 22 months yesterday ... had forgot about it and didn't even think about it until this morning when I looked at the calendar ...

 

No head pressure and benzo belly for two days ... guess that was the weekend bonus ... 

 

Tried for a walk this morning but still felt it too "heavy" to be walking around outside ... probably just me, but why struggle when I can sit around and think about food ... 

 

Have a good Monday Folks ... 

 

Congrats on 22 months.   Woo hoo..no benzo belly or head pressure for two days

 

Yep, sitting around thinking about food..sounds good to me...nothing wrong with that!!

Bean burgers...oh my gosh..going on my cooking to do list. Thank you for the bean burger reminder..I use to make them all the time when I had left over beans.

 

You see Nova, me and coop need those food memory jolts.   Hope you have a relaxing day.

[[No...]]

Food jolt number two ... making a cold noodle salad to go with the burgers ... I am rather fond of Udon noodles for this kind of salad ...

 

And a big, fat, face-puckering dill pickle ... 

[[be...]]

Morning all,

 

Hey Coop, Nova is making bean burgers...yummy yummy!! I use to make them years ago..had forgotten about them.

I haven't been sleeping well for the past three nights so I bought some unison yesterday and took only a half...I slept nine hours last night and feel drugged to the max this morning. Anything over six hrs.is extra for me..so that's three hrs. for my sleep bank. I think I would rather feel the loss of sleep than this drugged feeling..don't think I will be taking anymore unison.

 

I'm going to have a Nova day...sitting around thinking about food..and maybe a walk tomorrow.

 

Happy Monday all...make it the best day you can.

[[...]]

Hello everyone,

 

Firstly sorry to hear about these fires. I tend not to watch the news so was not aware of this until I read it on here. Coop, I hope your son stays safe. Nova it's good to hear you had no head pressure and benzo belly for a couple of days. 22 months is behind you now, so fete accompli and good riddance  I I'm glad you checked in Drew as tbh I was a bit worried you hadn't touched base for a while. Going on holiday is massive, I could not do it in reality at the moment. Sometimes I think I could when I get a bit of a break, but nah, not even worth planning yet.

 

I had my dinner guests over and after I worked through ridiculous fatigue and fog, it ended up being a lovely evening and I even laughed 

My 2 even said how nice it was to see me laugh again. My friend is totally aware of what I'm going through and very understanding. She also works as a Child Therapist and offers me much encouragement.

Yesterday of course was straight back to wd (now there's a suprise). I had anger issues too which I hate with a passion, it's just an additional lump of excrement to the whole  s show!!  and today is the 1st day of a week's leave from work. Major anxiety came to the dentist with me this morning and accompanied me round town as I bought my son's school uniform. I was so spaced out the whole time, however I even bought myself a new moisturizer.

When I'd finished my errands I phoned Bristol TP for some grounding as the same old fears and thoughts about 'this is just me' and 'I'm on the verge of insanity' were threatening to throw me to the wolves.

Ok, I spoke to Ian Singleton and he said that he would not expect anything else from me at this stage. what I was going through was 'totally normal'. I would without doubt get better. Everyone he speaks to has exactly the same fears, mostly the same symptoms and 95% of people's recovery is between 18 and 24 months or this is when great improvement is felt. I totally believe him he has been dealing with this at least 25 years. I know this is nothing new, however I need to hear it over and over and I'm sure many do too. He also acknowledges it is the worst experience anyone has to through.

I'm going for my walk now as I've rested and I can feel those self critical/angry thoughts surfacing 

 

 

   

[[Te...]]

Marjorie,

 

Thank you for sharing your phone conversation you had with Ian Singleton ....

 

The words......was something I needed to hear.....

 

Thanks.......TM

[[Co...]]

Morning all,

 

Hey Coop, Nova is making bean burgers...yummy yummy!! I use to make them years ago..had forgotten about them.

I haven't been sleeping well for the past three nights so I bought some unison yesterday and took only a half...I slept nine hours last night and feel drugged to the max this morning. Anything over six hrs.is extra for me..so that's three hrs. for my sleep bank. I think I would rather feel the loss of sleep than this drugged feeling..don't think I will be taking anymore unison.

 

I'm going to have a Nova day...sitting around thinking about food..and maybe a walk tomorrow.

 

Happy Monday all...make it the best day you can.

 

.....Good morning Beulah,.. .yes, bean burgers and veggie burgers...a refreshing reminder of existing goid beyond mashed potatoes and oatmeal......The unisom thing....I tried taking some benedryl last summer for sleep problems. I had the same thing.  massive hangover feeling and big headache. Like you, I decided the lack of sleep was the lesser of the 2 evils....being retired I could go as low and slow as needed...and living alone I could be as grumpy as I felt.

. ....I had a fling of anxiety/health fear for a couple hours this morning but it's gone now....just the residual kind of whacked feeling it leaves me with.  but I don't want to go low and slow today. ...I am starting to resist the low and slow....but also knowing that it's important to listen to the body cues.  I had a little temper tantrum yesterday and ate a small piece of chocolate cake ( scraped off most of the yummy fudge frosting) and a very small cappuccino. ...not too much pay back from the reflux, enough to remind me not to do this on a regular basis....I have to say.  ..defiantly , that it was worth it. I am joining TA ( tantrums anonymous ) with Green and Nova...

....Thinking of you Beulah...  Wishing you a day with sunbreaks... ..coop

[[Co...]]

Marj... so glad you enjoyed your dinner with friendss..  yep, pay back the next day from benzo beast. That happened for me every time . Do something one day with relative ok ....the next day back to acute. That is just now fading ...I would say in maybe just this month ( month 21)..  ..Yep, anger.  Today I am so pissed that reflux will not allow me the cappuccino and chocolate that give my life meaning and purpose... Nova started TA ( Tantrums Anonymous )..  Green and I are card carrying members...

...You are so brave to go to the dentist.. I have managed to find a million excuses to not go .....for 2 years....I have to go. I am sure it will require a little hydroxzine for me....I hated going to the dentist pre benzo.. .

    You are so generous to share your advice and encouragement from your conversation with Ian....You seem to be right where I was several months back. Still having a lot of sx, but functioning by my fingernails for things I had to do. Marj, it does get better, I know it doesn't feel like it wiill, but it does. Month 21 seems to be my best month so far. Just a 6-8 weeks ago I was still on the cycling sx merry-go-round and having at least 3 days a week of acute .....Give yourself as much slack as you can when you can. I know you have so much with work and kids..  I am wishing you big sunbreaks for your week of leave.  You really are so courageous Marj.  ........coop

[[Co...]]

Food jolt number two ... making a cold noodle salad to go with the burgers ... I am rather fond of Udon noodles for this kind of salad ...

 

And a big, fat, face-puckering dill pickle ... 

..

 

.......I am coming over for dinner. I have seen the Udon noodles, but haven't tried them..  I will now.  ...Sounds really good Nova. 

......

We are still drenched in smoke here, it's a little better, but we are still on 'hazard air alert', so limited time outside.  So bouncing off the walls a little.  Only so much puttering and book reading and tv a person can do.....after months of doing just that every day..  ....onward.......carry on Nova........coop

[[No...]]

Coop ... hope that smoke clears real soon ... I saw some footage on the CBC ... looks big and dangerous ...

 

Udon noodles ... buckwheat noodles ... thickish ones ... usually found in soups ...

 

Pinging off the walls can hurt your elbows unless you are in a padded room ... 

[[Fi...]]

Glad to report that the Willamette Valley is clearing of the smoke.  I'm sure we're better off here now than up by Coop.

[[Si...]]

Hi Everyone,

 

Just checking in briefly. I'm limiting myself from BB a lot just so I don't spend so much time. I'm just flying low on the radar now. Slept about 6-1/2 hours last night which is good to me. My head pressure is on the lower scale also, so happy about that as well.

 

Drew, glad to hear you're going on vacation. Hope you have a lot of fun. Let us know about it when you get back please.

 

Nova, yeah the heat and humidity can make you feel like you're walking through sludge. I'm a bit use to it having grown up in the South though. We didn't even have central heat and air until I was a teenager. Not exactly sure how we lived without it, but I guess if you don't know any better!  The Udon and bean burger sound good. We made a small roast turkey breast last night. So had that with rice and a V8. Then today it was cubed and onto a salad for lunch.

 

Coop, Udon is really good. The Japanese are fanatical about it. There are udon shops there like the Brits have pubs on every corner. I once saw a Japanese game show where they had the contestants try ones from different restaurants blindfolded. They then had to try and guess which shop it came from. The Koreans have a similar one, but they are a lot thinner called Naengmyun. My wife loves it.

 

Marj, thanks for the info from Ian. I'm constantly worried that I'll never get over this garbage. Glad you got to spend some nice time with your friends.

 

If I didn't reply specifically to someone, it doesn’t mean I didn't read your post and that I am still thinking about all of you. 

[[Gr...]]

I guess when I imagine my mother at 88 I see a woman older, losing pieces of her life, maybe not being able to be supportive or understanding. I guess I see an elderly woman needing my supoort..  especially as I heal and have more to give. I haven't written a success story yet, but I know that I am better enough to help where I can. ....I do have to say, my mom didn't get any passes. She was suffering lung cancer and the debilitating treatments for it. She looked 95 not 63. 

.    I don't want to discourage any conversations about getting through this with family members. It takes its toll and I am now taking advantage of feeling better to repair those relationships. Lots of people couldn't 'be there for me'.  .We have said it so many times, " how can anyone understand this unless they have been through it". I am just trying to take the track of, ' now that I am better I want to be strengthening my family relationships'..  We have all been disappointed in our relationships with this....for me..  time to move on and make them better.  Just my opinion .... coop

 

Coop, I'm so glad I opened the thread and read this post first.  On this topic.  I know a woman in the community going through Ambien and AD withdrawal.  She's having a horrid time of it.  Recently she had to go to the ER for a complication related to bariatric surgery, emergency surgery.  The recovery has been terrible for her, exacerbated by PAWS.

 

She was in the hospital 12 days.  I was up to visit a couple of times, including waiting while she was in surgery, which took its toll because I'm so wobbly myself.  Her elderly mother and father took public transportation quite a distance to be there for her.  Her partner was there every day.  So people were showing up for her.

 

She complained to me on the phone that "nobody had been there for her and she felt abandoned."

 

Her comment made me realize that nobody can really be there for us.  I remember feeling abandoned in tolerance, that nobody was there for me.  people were there, in the beginning at least.  I think we have to consider withdrawal as a significant, debilitating for some, illness that goes on a long time.  Some of us don't want to be alone, some of us prefer to be alone, but either way, there's nothing anyone can do to comfort us.  My point, I think, is, this journey is lonely, terrifying, physically and mentally distressing.  Even if people are 'there,' they can't make it go away, they can't make us feel better.  and that's a terrible burden to put on anybody.  I found myself on the other side of the sick bed, if you will.  I found myself faced with her pain, her irritability, and the feeling that I wasn't doing enough.  (And this is not a selfish woman, when she's normal, not suffering)

So I find myself softening on my stance that I was 'abandoned.'  After all, what could people have done for me?  Were my young sons supposed to put on hair shirts and suffer with me for two years?  should people stop living because we are sick?  When I found myself in the position of caregiver, I could see how exhausting a sick person can be, how draining it can be.

 

What I did was remind her that people had come to see her, that people were there for her, and that this withdrawal is a very lonely journey.  But most important was what I learned about myself, my own feelings of resentment and abandonment.  And so, like you, Coop, I am attempting to rekindle the relationships I consider of value, that I don't want to lose.

[[Gr...]]

Hi all... Just dropping in for a quick hi.  I didn't read back more than a page or two but I see coop is doing well and I hope others are too.  I was on vacation the last week. Went to hot springs and had my brother visit. Only one real bad day with a severe headache. 

 

I've been tracking all my symptoms (once a day) and I've noticed my days almost always alternate between good and bad.  Good being relative .  I'm trying to just stay super distracted.  One thing to another.  I just finished a model of the uss Arizona.  I'm practicing keeping my hands steady with all the painting.

 

I'm going to continue to just check n briefly and just take each day as it comes.  :smitten:

 

Good job.  love the thought of the model, USS Arizona!  Great distraction