neroli: is this benzo withdrawal, or other drugs interacting

[neroli]

8 hours ago, wantrelief said:

sorry to read that you are going through a difficult time.

Thank you, Wantrelief.  What a lovely kind message to send - and for giving me a boost.  Surprisingly, I just don't know how this works, I had an ok day today - felt steadier on my legs, went to work and stayed til 4.00pm and still feel reasonable now I'm home, not as wiped out as I was yesterday and the legs less "twangy".  It wasn't even as if I had a solid night's sleep, got up at 3 for the toilet and had heartburn so took some bicarb in water.  I think I probably slept a little more until 4 and then it was a light doze to one of those meditation music things - 

then up as usual at 5.45.  There is no rhyme or reason that today should have been better - I was even able to crack a joke or two.  Baffles me!

 

So, I'll take the good day when it happens.

 

Lovely to hear from you

 

Arohanui (https://maoridictionary.co.nz/search?idiom=&phrase=&proverb=&loan=&histLoanWords=&keywords=arohanui)

 

Neroli 💜

 

[neroli]

1 hour ago, Rabe said:

I feel blessed to have you on this journey my friend!

Dear Rabe

 

You will have me splashing tears all over my laptop!  Blessed!  crikey - thank you so much.  Maybe in all this unwanted journey we do find ourselves appreciating  people more. I have certainly experienced more kindness than I thought possible, in my local life here and on this forum.

 

Much love and best wishes to you - keep on keeping on

 

Neroli 💜

[Rabe]

On 12/11/2018 at 12:20 AM, neroli said:

So, I'll take the good day when it happens.

That is i, Neroli, isn't it?  Wish there was more good in these holiday days...but I am grateful for it when it does happen.  Blessings to you dear Neroli...gald to hear your legs are better.  Think of you so so often!!!💜

[wantrelief]

Hi Neroli - I've been thinking about you and meaning to stop by for awhile now to say hello.  I think I read on Rabe's thread that you had a good day yesterday and were able to relax.....I was really happy to read that.  I hope today has also been a good one for you.  I had to look up the meaning of Arohanui (written in your last post to me above)....so beautiful, thank you for sharing that; it warmed my heart.  ♥️ 

[wantrelief]

I meant to say I had to use the link you provided to see what the meaning was (you saved me the trouble of looking it up!).  

[neroli]

Thank you so much for saying hello Wantrelief.  You have helped me enormously by doing that.  I am not having such a good day today - bad sleep last night and so I'm particularly tired and the legs are like pieces of lead again.  Didn't manage to go for a walk and maybe you've seen me mention that the heat makes things worse.  It's ok, though, I've tossed the coin and it says I will be ok to go to work tomorrow 😄  Will reach for any glimmer of hope, eh?  (note: if it doesn't come up heads the first time, I toss until it does - must be a bit doolally!).

 

Arohanui is a lovely word, isn't it - it seems to encompass more of the deep good wishes and appreciation than "love" does for me.  I'm not Maori but we (thankfully) hear more and more of te reo (Maori language) spoken these days.

 

I hope you're doing ok - I haven't been over to your thread to have a look but I will at some point.

 

Gosh, I wish all of us here the deepest of emotional strength and any tiny bit of relief we get.  I am very tired with it all. 

 

thanks so much for popping in

 

Neroli 💜

[wantrelief]

Oh Neroli, I am so sorry you are not having such a good day today.  I did see you mention that it was hot but I don't think I realized the heat exacerbates your symptoms. I hope it cools off soon.  It must be very frustrating to have had a good day yesterday and be back in the soup today.

 

2 hours ago, neroli said:

I've tossed the coin and it says I will be ok to go to work tomorrow 😄  Will reach for any glimmer of hope, eh?  (note: if it doesn't come up heads the first time, I toss until it does - must be a bit doolally!).

Even though you aren't feeling well, your sense of humor is still shining through!  I will keep everything crossed you are feeling ok for work.

 

2 hours ago, neroli said:

Arohanui is a lovely word, isn't it - it seems to encompass more of the deep good wishes and appreciation than "love" does for me.  I'm not Maori but we (thankfully) hear more and more of te reo (Maori language) spoken these days.

That is what I thought too reading the description.  How lovely to hear more te reo (I am learning so much from you!) being spoken, it sounds like a very poetic language.  

 

2 hours ago, neroli said:

I hope you're doing ok - I haven't been over to your thread to have a look but I will at some point.

I haven't posted an update for a bit.  My last cut seems to have gone well, thankfully, but have had a couple of non-withdrawal struggles: hormones and now my back seems to be in a bit of a mess....a pulled muscle or something (I think I am lying around too much) so nothing serious but not fun.  😕 

 

2 hours ago, neroli said:

Gosh, I wish all of us here the deepest of emotional strength and any tiny bit of relief we get.  I am very tired with it all. 

What a lovely sentiment, so well put.  This does take so much emotional strength to get through.  And I really understand your being so very tired with it all.  Me too, my friend.  Together we will push forward. 💗

 

 

[Rabe]

Hi my friend!  Im so sorry today has been difficult..those legs!!!😡 Sure hope things go as have and tomorrow is good and you get to work on those non sleepy legs! 😀 

2 hours ago, neroli said:

I wish all of us here the deepest of emotional strength and any tiny bit of relief we get.  I am very tired with it all. 

I sure wish you the same Neroli...and more!!! 💜

[neroli]

@wantrelief and @Rabe

 

Thank you both so much for your words of encouragement.  It's not just the legs the heat exacerbates, it's all the other symptoms, the exhaustion, the anxiety spikes, the anhedonia and then the grief that comes from that.   And SI, a feeling of why bother, why bother to feed myself, to keep going to work etc etc....... As you both know, withdrawal and medications cause these "neuro-emotions" and we do our best to live with them.  On "good" days, it's bearable and even some hope of seeing improvement, of being able to feel calm within and patient with the process, of surrendering to it.  On "bad" days, it's a battle.  And the future looks bleak.

 

At this point, the psychologist I've been seeing for Acceptance and Commitment therapy would perhaps say that I need to practice "thought de-fusion" ie. not getting tangled up in those thoughts and letting them roll on, to step back and be an observer of the thought, to maybe say "I'm having the thought that I'm feeling hopeless/SI......" and then trying to get some more distance from the thought by stepping back a bit further and saying "I notice I am having the thought that.......".  I think I need more practice for this to be effective for me as a means of dealing with the emotional pain.  And I do think that if the therapist isn't experienced in withdrawal effects, then the "therapy" is compromised, from the point of view that there is little understanding that "I" am not "creating" the thoughts/anxiety - that they spring up on many occasions not from a thought process but from the drugs/withdrawals.  I do understand the concept, though, of not creating more suffering by letting the thoughts blossom.

 

I'm in bed now, fan on, legs up, cooling down.  Tomorrow is another day and has happened before, could be a totally different kettle of fish, especially if I get some decent sleep.

 

Well, I've expressed some of my darker thoughts.  Hope it's not triggering or too much feeling sorry for myself.

 

Best of the best to you both.  

 

Neroli 💜💜

 

 

[wantrelief]

8 hours ago, neroli said:

Well, I've expressed some of my darker thoughts.  Hope it's not triggering or too much feeling sorry for myself.

 

No no, not at all Neroli.  I am glad you were able to express what you are going through.  I understand and am having some similar thoughts including SI and feeling like the future is bleak.  It is funny....I've also been learning that exact skill in therapy for how to handle my thoughts.  It is very challenging though in withdrawal and it seems at times beyond our control.  I have found it at least somewhat helpful if I can remember to use it.  I know what you mean about the thoughts being created by withdrawal/drugs and not us....I still try to use the skills even though it can feel like an uphill battle.  It is very difficult not to feel sorry for ourselves with this whole situation.  All of this is to say you are not alone.  I hope you were able to get a better night's sleep and that tomorrow is a better day.  Hang in there, my friend. 💖

[neroli]

3 hours ago, wantrelief said:

All of this is to say you are not alone

Hello Wantrelief

 

Thank you, thank you.  You are hanging in while experiencing similar stuff.  It means a lot to hear that from you.  It is tough.  I try to use the de-fusing when I can remember!  Last night I was gong down the rabbit hole of what if...I end up not being able to walk, how will I get my groceries, will I have to go in a home - oh no!  Then stopped it and distracted.  I can only deal with what is right at this moment.

 

I did get a better sleep and am venturing into the office.

 

Huge thanks, friend-in arms

 

Neroli 💜

[Rabe]

@wantreliefHi WR and Neroli...I want to thank you both for sharing all that you did.  It is exactly what I feel so often...and this morning am feeling very sad, very alone, anxious and, yes, the looking at the thought as something else is not an easy task...it seems to be so connected to me as I dont see a path forward..seems I cant ever get things right...and seems that there really are no answers.  I see the doctor this week and have nothing to bring to him and I fear what he will suggest or do. The SI is sometimes consistent and other times gone..but seems to lie in wait for vulnerability.  I think the holidays make it harder as well.  Know that I think of you both daily and, yes, you are not alone...we are not alone..but even that sometimes makes me even sadder...to know that so many dear, lovely, kind, wonderful people are going through this too.  Love and hugs!!💜

[wantrelief]

I am definitely experiencing similar stuff as you.  I too catch myself having frequent "what if" thoughts - "what if" i get worse, can't get through this taper, never heal, etc.  I've even had the same thought of having to go to a home!  I try the same as you to return to the present as these thoughts are so unhelpful and cause a lot of despair.  I am so glad you were able to catch yourself in the "what if" thinking and were able to stop it and distract, that is great!  I liked what Brassmonkey said in his piece about fear, that we should ask ourselves "what if I get better"?  I just have to remember to say that to myself to turn around the negative "what ifs" when they are happening.

 

I was happy to read that you got a better night's sleep and were able to go into the office.

 

You are my friend-in arms (I really liked how you said that).  Thinking about you - WR.

[Rosetta]

Thinking of you.  I'm so sorry you are struggling with these thoughts.  They are difficult to ignore, but when I think I can't do something I usually prove myself wrong.  Many times I don't go out because I'm afraid of what will happen, but if I do things usually it turns out ok.  That's why I document what I did.  I'm able to remember it if I do that.  Being able to remember that I was capable is really important if I'm in a wave.

 

I hope you sleep well.  Goodnight/good morning.  Have a nice day. -Rosetta

[neroli]

11 hours ago, Rabe said:

I think the holidays make it harder as well.  Know that I think of you both daily and, yes, you are not alone...we are not alone

Hello Rabe

 

Thank you so much for your sharing as well.  It's not right that so many are suffering because of these drugs.  I am so amazed that, here, on this very site, and other support sites, is the biggest hunk of research data providing real insight into what can happen through psychotropic medications - and still the"establishment" cling on so tightly to their  denial, or naivety, or whatever it is - s system that provides so much business for so many people, jobs, livelihoods, vested political interest....?  It has opened my eyes more to the realities of the world, I think.

 

The holidays can be harder - and maybe that has been feeding into my feelings as well, knowing that xmas is coming up and I wlll have to take some leave.  I need to take leave, I'm running myself into empty battery land - but there will be those times of painful isolation to deal with.

 

So, I will hold you in my thoughts and know that we are rooting for each other.

 

Thank you for coming in with your support - you are astounding in your generosity.

 

Neroli 💜

[neroli]

10 hours ago, wantrelief said:

I liked what Brassmonkey said in his piece about fear, that we should ask ourselves "what if I get better"?

True, Wantrelief, true.  We are hard-wired to look for the danger, the negative, for our survival, we don't give the "we could get better" much of a chance.  Though my psychologist said hoping for things to get better is not fully accepting what is.  I kind of get that but, sheesh, I'm only human - it would take some time to really accept with no expectation of improvement.  buddhist practitioners practice for years and still they come unstuck when the proverbial hits the fan.  Brassmonkey also so wrote something on not getting into a spiral (I noticed it fleetingly yesterday), so I will have a read of that.  I think it's in symptoms and self-care.

 

Thank you for being there and supporting. Keeping you in my thoughts.

 

Neroli 💜

 

[neroli]

2 hours ago, Rosetta said:

Many times I don't go out because I'm afraid of what will happen, but if I do things usually it turns out ok.  That's why I document what I did.

Thank you for your kind thoughts, Rosetta.

 

This happens to me as well, it's a mixed bag as to how things turn out - sometimes ok, sometimes I really struggle.  I document all the bits I do in a daily log book - sometimes I look back and see there is more I can do now - so that is some comfort.

 

I admire you for your strength and determination - and getting out there and doing all that you do.

 

Wishing you some relief, some windows, some calm and gentle enjoyment (the anhedonia is just bleugh, eh?).

 

Best of the best

 

Neroli 💜

[Carmie]

Hi Neroli, 

 

How are you doing? I’m still spending most of my time in bed but I have a little bit of brain back this morning. Yay!! 

 

What a good idea that you log the things you are able to do on a daily basis. Must be good looking at that and seeing your accomplishments. I journal too and I can see the things I’ve been up to. 

 

How are your legs today? I’m so sorry you have such problems with them.

 

Sending hugs🤗

 

 

[neroli]

Hello Carmie

 

Thank you for dropping by - good that you have more of your brain back.  I appreciate you coming over to see how I'm getting on.  You continue to amaze me with your tolerance of all that you go through.  

 

The past few days have been rather tough again - more anxiety and SI, and the legs are just as leaden.  Motivation is low, too.  I've been at home working today - and the only way I could engage with it was to do some reading to at least gather information for some work which is coming up.  I hate thinking of the future and how I'm going to cope with it.

 

I need to cut my nails and I can't get the motivation to do it!

 

So, I've had a nap this afternoon (not as toxic as usual if I doze in the afternoon) and I'm doing some knitting.  Soon it will be time for dinner and then I can go to bed and watch Netflix.

 

I cut 2.5mg off the Nortriptyline last Friday, so today is day 6 and I'm wondering if that is having more of an effect on the symptoms.

 

I'm wondering now whether I consider holding for 6 months to see whether there is some kind of stability that can be gained.  Just don't know whether the drugs are making things worse but if I take a drop it's shaking my system.

 

I keep looking at your signature and I know that you have endured so much.  

 

Hugs back to you

 

Neroli 💜💪

[Carmie]

Hi Neroli, 

 

Thanks for your kind words. I try to cope as best I can, don’t always do well at it though. I’m so sorry that you are going through a tough patch again. What I can say though is you can’t live in the future , you can only live in this moment. Worrying about the future accomplishes nothing. I know it’s hard but we can only live a moment at a time. 

 

Yes, that cut you made is probably still affecting you. I know when I’ve made small cuts a lot of the time it hit around day five or so. How were you feeling before the cut?

 

I think it is important to sometimes have long holds, I’ve done it quite a number of times to get some kind of normalcy in my life. Only you know how your body is doing. I taper according to my body.

 

Can’t wait to get back on my original tablets again, though it might take me another three months to stabilise. I will cross taper this time though. See what happens. I might do it in January. I’ve gone through three months of withdrawals for nothing and another three months probably to get back to where I started from. But like the saying goes, one can’t cry over spilt milk. I wouldn’t cry anyway, as I don’t drink milk🥛🤣.

 

Great that you were able to gather some info for work today. We can only do what we can do. At least you looked at the positive n did something you were able. 

 

Hope you’re feeling a bit better soon, sending sunshine your way☀️☀️☀️

 

 

 

 

 

 

 

 

[neroli]

You are so right, Carmie, we can only deal with one moment at a time.  I got particularly hit with the "future worries" in my team meeting (which I was phoned into) and I could see all the work which is coming up in the new year - my thoughts were going "yikes, will I be able to cope?  when will it get to the point where I'm not performing and I have to leave?  what will I do then?  how will I get meaning in life?  how will I make new connections with people in my community so I'm not isolated?  I don't feel well enough to make new friends, who will want a friend who is not the light and life of the party?.......all this in a few milliseconds.  That's when I have to stand back and breathe and remind myself it's ok to not take all of the stuff on board - I can take things as they come up.  Each moment is a work in progress.

1 hour ago, Carmie said:

I’ve gone through three months of withdrawals for nothing and another three months probably to get back to where I started from

I missed this part of your process - I haven't caught up with the more recent things you've been through, so I didn't realise there'd been such a swerve in the road, landing you back at the starting gate.  I would feel so disheartened if it was me.  But, then, after the year I've had of trying to come down in doses and gong back up a bit to re-stabilise, it is slowly sinking into my consciousness that this will not be a 2-year breeze of tapering and I will spring back to being able to walk hills and feel free again.  Nope, this is a much longer journey and I will gradually develop more patience.  Also, get used to the "new" me (the one I don't want so fervently).  Both Tara Brach in her talks and the ACT therapy I've just been through are about accepting what is.  Tara Brach goes further and talks about treating it with kindness.  It takes some time to develop that.  And I have a feeling that with this withdrawal stuff it's a constant state of flux from day to day accepting what is, treating it with kindness and getting used to a "new me" in almost every moment.

 

I've looked back at my symptom journal notes and can see that there was some noting of SI a couple of weeks ago but this week it's been on more or less a daily basis.  So maybe it is the cut.

 

It's coming up close to 2 years since I had my physical breakdown and getting the wobbly legs, January 2017, from long-term WD effects and I suspect exacerbated by the heat of summer.  In 2017, I went from being med. free, to going on to Lorazepam, then adding Escitalopram, then Nortriptyline as well, a short stint on Lithium, then crossing over to daizepam and then cutting that down by half over the past year, with an attempt at cutting Escitalopram and now Nortriptyline.  I do sometimes think that my body has taken quite a battering and that the physical breakdown itself is nothing to be sneered at, then all the drugs and ups and downs etc....and getting myself back to 5 days working (part-time) being involved in new areas of work that created some stress, so perhaps that's quite a lot for a CNS to handle.

 

I hope your cross-over to the old tablets goes well and that there isn't too much jangling from that (hopefully none).

 

Thank you for your wisdom.  Sunshine back at you - though we've had rain all day and I must admit it is easier when it is cooler.

 

Lots of thoughts and best wishes

 

Neroli. 💜

[Rabe]

Hi Neroli...stopped by two let you know I am thinking about you.

I was reading your post...when I took the time to outline all I have been through in the past 4 years I was really astounded...I realize better why I am where I am.  It is slow but I it does make one grateful for the good days or moments of a day for sure!  Nothing taken for granted.  

23 hours ago, neroli said:

so perhaps that's quite a lot for a CNS to handle.

I would say that is an understatement Neroli!!  Yikes!!  You are a trooper my friend and I send hugs to you across the waters I love!!!  💜

[neroli]

23 hours ago, Rabe said:

when I took the time to outline all I have been through in the past 4 years I was really astounded...I realize better why I am where I am

Hello Rabe

 

When you take stock and look over the history it can be quite enlightening, eh?  For me. I think it is sinking in deeper that I have a CNS damaged condition that isn't gong to go away as easily as I had thought.   I guess it is another step along the road of acceptance.  Not that I like it, just that it is as it is.

 

It was our last day at work today and I was going to go to the office but then there were train disruptions because of mechanical issues, so I decided not to risk it - didn't want to be stranded 2 hours from home, especially with my legs feeling more wobbly.  So, I worked at home and got done what I wanted to tidy up before next year, which I wouldn't have done if I'd gone into the office because it was all "last day"-itis, with bubbles and strawberries at noon and then the all-clear to go home.  It would have been a tremendous effort to go in just for that.  Bit sorry that I didn't get to see my friend-in-withdrawal at the office, though.

 

Knitted most of the afternoon, watching Tara Brach videos and reflecting on the past year.  

 

Now, I'm in bed, legs are at about 7, I'm going to do a bit of emailing and then watch Netflix.

 

Hope your day has gone ok.  I see you have been having med. talks with the "professionals".  Yay, for when it is sorted.  Got to say you're doing well to keep at it.

 

Neroli 💜

[Carmie]

Hi Neroli, 

 

Thanks for popping over to my thread. I just wanted to say I hope you had a lovely lunch with your friend. I think friends are very important when going through the withdrawal process. A friend asked me to go up the Coast with her today, but I didn’t have the strength, though I’m hoping to catch up with friends tomorrow morning. 

 

Sending sunshine your way☀️☀️☀️

 

 

[wantrelief]

Hello Neroli,

 

I just read your post on my thread and thought I'd pop by "your place" to respond.  I am so sorry your last drop caused an uptick in your symptoms.  I know exactly what you mean about wondering if there really was an increase in symptoms since those things were there before, it is so very hard to know.  I struggle with that same thing.  Plus, indeed, we are on the look out for anything different so that could also be in play.  Anyway, you are experiencing these symptoms either way and for that I am so sorry as I know how hard it is to have any worsening when things are already feeling so difficult.

 

It sounds like you are coping quite well today despite your symptoms, distracting with your knitting and listening to podcasts.  

 

I love the idea of a withdrawal retreat, especially if we can tele-transport to it!

 

I hope your symptoms give you a break very soon, Neroli. 

 

Thinking about you,

WR.

 

 

 

 

[Rabe]

Hi Neroli...been thinking about you and I hope your legs are not worse and that the distractions and time away from work is helping.  Take care my friend!!  💜

[Carmie]

Hi Neroli, 

 

Glad you’ve been keeping yourself occupied with your knitting. You’re on holidays, no work for a while. Yay!! You can rest those legs of yours. I’m sorry they give you so much trouble. 

 

You said you have a friend-in-withdrawal at the office. Is she also going through withdrawals or does she support you in your withdrawals?

 

Have a good evening. I don’t know what the time difference is between Aussie Land and New Zealand. 

 

Take care, and get plenty of rest while you’re on holiday. Do some pampering too, do some special things for yourself that you wouldn’t normally do. Time for a bit of self care. 

 

Sending sunshine your way☀️☀️☀️. Actually it’s night now, maybe I should send you some moonlight instead😄💚

[neroli]

9 hours ago, Carmie said:

You said you have a friend-in-withdrawal at the office. Is she also going through withdrawals or does she support you in your withdrawals?

Hi Carmie

 

We're three hours ahead of you.  

 

My friend at the office is going through withdrawal (he's a he) and has been for all the time that I have, although his is Benzo. related.  He has supported me so much, there is nothing big enough I could give him in return.  I hope I've been a support for him as well.  Unfortunately, I feel as though with the physical breakdown and the continuing legs issue, and now back on three psych. drugs, I have "dropped behind" in the recovery process.  He can do so much more than me, albeit with a lot of anxiety and panic attacks, I think I feel a bit distant now.  I get jealous when I hear that he's been able to go out and enjoy himself.  I don't want to push him away but I have to work hard to talk about other things than my symptoms and withdrawals.

 

I've just been for a 35 minute walk and my legs are aching like mad.  I fear they are getting worse.  But for now, I need to focus on just taking the time to relax and not worry about what next year will be like.

 

I hope you are doing ok and your distractions are giving you enough to get you through - you are an expert at it by now.

 

Thank you so much for getting in touch - where would I be without your contact and others on here who also lend support?  A stranded whale, that's what I be like.

 

All the best for the xmas season.

 

Neroli 💜

[Rosetta]

Hi Neroli, I hope being off work gives you a much needed rest.  Merry Christmas. -R

[Rabe]

"I'm still rather peeved that Drs. Psychologist, Psychiatrists deny this horror-show/don't know what it entails and push the CBT-type "what is your thought, what is the worst that can happen, what evidence have you got of it happening, how can you think of it differently" stuff at you.  I honestly do get it conceptually but it makes me angry in practice.  They have NO IDEA what it's like to have to every day check in and see if it's a day when you can do the things you wanted (pretty small things in comparison to pre-drug) or, no, it's not going to happen or it could even make things worse.  Bit of a rant, there.  Had a bit of a go at a psychologist recently because I perceived she was saying I was letting my symptoms stop me from doing things and that I could work on doing more.  I got up, angry and in floods of tears, told her that I was angry and that if she was saying I wasn't trying hard enough, then she I needed her to know that for the last four to six years "I've been fighting f*****g hard".  Then left.  I've been back since and told her how I thought she's been looking from the deficiency model side of things.  Anyway, I don't think therapy is for me - but I am going to check In with her after the new year.  I know she means well - she's in the public service, so it's free, andI am so wary of the public service now.  Blimey, more rant.

 

Wouldn't it be lovely to have a day or so together, along with other select withdrawers, on a few days pampering retreat - great food prepared for us taking in to account all the GI issues, time out whenever needed, tele-transport to and from the destination so it cuts out all the anxiety and exhausting travel, and a bit of nature around to look at even if we weren't able to walk in it.  Ok, I'll try to imagine you sitting with me tomorrow."

 

Hi Neroli...I just had to tell you how much I loved reading all this.  Good for you for telling the doctor...and I love the sounds of that retreat!  Perhaps someday...take care.  Thinking about you!  "Blimey, more rant" 😂 

[neroli]

Hello Rabe

 

You've come in at just the right time, bless you - I'm in one of "those days",  feeling pretty yucky and fighting off despair.  Despite going over to decaf. tea, I'm still having to wee a million times an hour, I've got the shakes and that hollow/hungry feeling, which I thought was dissipating.  I was also feeling pretty isolated - so you reminded me that I had thought to keep others in mind today.  Thank you.

 

I'm glad you enjoyed reading the rants, I had to let that psychologist know how much I've fought to keep going as normally as possible - how I've stood at the bus stop every day I go into the office, shaking and feeling the drag on my legs, practicing breathing when the pressure goes up a bit at work, getting home and just being able to make dinner from left-overs (I cook enough for a week on Sunday) and then go to bed.  Of course, you'll recognise all of this, you deal with it too.  And some more.

 

I did a 35-minute walk around my block this morning (it's suburban, so not city blocks) with the legs at about 7 on the "Richter scale".  Then I watched a film on Netflix (that feels just wrong to me, watching a film before noon but I guess I can get used to it).  And, after lunch, I thought "am I making more of these symptoms than is real?" and I got my bike out of the garage and rode round the block, on the pavement, I wouldn't feel safe on the road.  But I kept my balance and managed 15 mins. or so of low gear pedalling.  Stopping and starting were wobbly.  My legs have gone up to 8.  I think I was just trying to prove to myself that I'm not being lazy.  Bit of an accomplishment, though, that bike hasn't been out for over two years.

 

Got half an hour before my real "pleasure stop" of the day - cup of tea at 3.  Then I'll probably do some more knitting.

 

You are definitely on the list or retreatants.  Maybe one day......as you say.

 

Thinking of you, too and wishing you the best for xmas day.

 

Neroli 💜

 

 

 

 

[wantrelief]

Oh Neroli, I am so sorry about your day and how you are feeling.  It is so hard not to feel despair at times and is completely understandable. 

 

I forgot to respond to your experience with your psychologist in your post yesterday.  I understand your frustration as you have been doing so much to keep your life going and it doesn't sound like she was acknowledging all of your hard work.  I have the same frustrations at times with my therapist.  Unless someone has gone through this they have no idea how hard it is to do anything, let alone all that you are accomplishing.  

 

Your taking a walk today and then bicycling is huge....I just wish your legs would cooperate.

 

I am thinking about you, Neroli.  You are not alone, my friend.

WR 💖

[neroli]

Oh, thank you Wantrelief.  So nice to hear from you, too.  I'm glad you understand the therapist business - there's always that tension between their ideals of what you can achieve and our own knowledge of how a shattered CNS affects everything, how every day is an unknown, how much capacity we have to do things, or even just be at times.  I know you'll understand this, I'm preaching to the converted!    My friends have commented that many people, having had a breakdown and being left physically "challenged", would have given up, they applaud me for keeping going.  It's nice to be reminded that I probably have some inner-strength that keeps me going (as everyone else on this site has) but I do reflect at times and realise there are no medals, no public accolades for our efforts at living with what is.  There is only the plain old mundane quotidian facing of what we are facing.

 

I'm watching a Tara Brach video at the moment called "Relating to the Fearsome Deities" - it's about being aware of and opening our hearts to fear.  Don't ask me how you do that - I repeat listening to them to glean any insight I can from them.  This one is a good one because she briefly touches on a period in her life when she was ill for about 7 or 8 years and had no idea if she would recover her mobility or be in a wheelchair.  I've just googled it and found a page about her genetic condition,  the break-out on the first page says:  "Tara Brach shares an emotional story how meditation helps her find peace and refuge every day as she learns to live with a genetic disease that affects her mobility. She tells a touching story of her whole family going to the beach without her and the realization that she needed to find peace and happiness in her life no matter what."

 

 

This is exactly why I watch, read, listen to anything like this.  'peace and happiness in...life no matter what'.  Simple but not easy.  I'll read the page in full later - there's a video on it as well.  Link if you're interested:  https://www.tarabrach.com/tara-brach-shares/.  Hmmmm, better scale up the meditation.

 

I'm not a Tara Brach devotee, in fact I think I've shared somewhere else, maybe on this site, that I thought she looked too glamorous to be a "proper" Dharma teacher (slight perception prejudice showing up, there ). But now I've found her videos, I have them on when I'm knitting or resting, on the principle that surely some there could be some "spiritual osmosis" occurring.

 

To be fair to the therapist and the Acceptance and Commitment therapy we were doing, she did say that fighting the condition, or being in this condition, would be exacerbating the condition by piling more angst, worry, negative thoughts/feelings on to it, than fully accepting, not fighting.  I just don't know what not fighting looks like - aha! maybe that's it, I'm trying to see what the completed acceptance  picture looks like but actually there is no end-point picture, it is a process of continual flux.   And I do have to be aware of not expecting perfection, that there is a place where everyday I get up humming a cheery tune, saying to myself "oh, there they are again, those dear old symptoms, tra-la-la".

 

I've got a bit of a sense that my leg muscles will be like rocks tomorrow - already there's more stiffening.

 

Anyway, WR, thanks for being there, and for saying I'm not alone, that you are thinking about me.  My thoughts are with you, too.  I was just thinking today how I have two personas, the SA one, where I have you as online friends and support, and the everyday "me" one, where friends do support, and the one that is trying to keep up with who I was before the drug-damage.  Interesting, eh?

 

Wishing you the biggest best wishes

 

Neroli 💜

 

[Rabe]

Hi Neroli...

2 hours ago, neroli said:

feeling pretty yucky and fighting off despair.

I am in the same boat much of the time. You know....when I was in treatment a therapist had me write, "I may never be the person I was"...and I cried and cried and wondered why he did that.  Now I know.  It breaks my heart to think that...to think that the person I was is gone...and I feel she is.  I feel so inadequate and not a part...not of any part of life...not my friends, family, children, grandchildren...and it breaks my heart especially on this holiday as it was always so special for all of us at my home.  I am very sad, very lonely, and fighting the despair you speak of.  

I try to distract and all but there is so little to do here...just a fish waaaaay out of water and not even in a familiar pond.  I wonder how long people hang on to this when hope seems to fade.

But then a better day comes and some light shines through a but...I am praying to get to see my son and his wife after Christmas....knowing can count on nothing.  

Doctors, family, friends, therapists....no one has a clue what this is about...I sure didnt!!  And still dont really.  Feel lost in that part of the arena as well.  

I think about you everyday and keep you in my heart and prayers, Neroli, and want you to know that.  You are such a kind, courageous person and a dear friend.  I hope you sleep well and that tomorrow sheds some warmth on your sadness...and it melts a bit.

I find I have to wee a lot as well...I drink lots of water and that seems to help.  I know that it can be a symptom of tapering the bentos...among a million others!🙄 Also, if your electrolytes are off yiu can either go less or go more...so hope you are not overheating there.  Please take care of yourself...you are so very very special!  Thank you for the link...I am going to copy it and look at it...I need something.  Love and hugs Neroli!!!  

I am needlepointing...we can open a shop some day!!! 💜

[wantrelief]

2 hours ago, neroli said:

I'm watching a Tara Brach video at the moment called "Relating to the Fearsome Deities" - it's about being aware of and opening our hearts to fear.  Don't ask me how you do that - I repeat listening to them to glean any insight I can from them.  This one is a good one because she briefly touches on a period in her life when she was ill for about 7 or 8 years and had no idea if she would recover her mobility or be in a wheelchair.

Thank you for the tip about the Tara Brach video.  I really like her and have listened to one of her other meditations on fear.  It is really interesting to know she faced (or is facing?) a difficult illness - I didn't know that but have wondered about her as she seems to understand emotions so well, including fear, so now it makes sense that she herself has endured her own struggles.  

 

2 hours ago, neroli said:

aha! maybe that's it, I'm trying to see what the completed acceptance  picture looks like but actually there is no end-point picture, it is a process of continual flux

I like how you worded that....it does seem like acceptance is a continual flux with whatever may be happening in the moment.  

I hope you are feeling somewhat better as your day has progressed.  If not, hopefully tomorrow will be a better one, my friend. 💗

[neroli]

2 hours ago, Rabe said:

when I was in treatment a therapist had me write, "I may never be the person I was"...and I cried and cried and wondered why he did that.  Now I know.  It breaks my heart to think that...to think that the person I was is gone...and I feel she is.  I feel so inadequate and not a part...not of any part of life...not my friends, family, children, grandchildren...and it breaks my heart especially on this holiday as it was always so special for all of us at my home.  I am very sad, very lonely, and fighting the despair you speak of.

Oh, yes, Rabe, I understand that.  It is slowly becoming clear to me that I may never be the person that I was.  I've been thinking it for over a year now, but had held on to some hope of bouncing back to the Lynne that used to be, the one who was a bit of a worrier but who could have a good laugh at things, be a bit of a cynic, be there for friends and enjoy social times with them, usually getting into deep conversation.  Now, I see myself as a disabled person needing support.  It really rocks my identity boat.  I've cried oceans and will still, I"m sure.  And things don't stay the same, for instance I've noticed that my fingernails have gone ridged, that I see the veins in the back of my hands much more, showing up as a blue hue and maybe my skin thinning, my toes are becoming numb, my body is aching more.  I know these are cosmetic and would come with age anyway but it is a rapid change of the person I was. I feel distanced from the world and less as a friend.  I mentioned to the therapist that I felt shame about being less, she didn't seem to be able to get to grips with that.  Yet, I have just heard Tara Brach (crikey, I keep referring to her, I'm on a bit of a YouTube trip with her at the moment)  say the same thing when she was ill.  She became distant because she felt shame about not being fun to be around any more.

 

I'm with you on feeling sad, lonely and frightened.  But, as you say, there are days when a bit of light shines through.  I do so hope you get to see your family.  I understand from your posts that you are not at your home, that you are maybe at a "facility" somewhere - that can add to the estranged feeling.  My blue-veined fingers and numb toes are all crossed that you get to see your family.  And may tomorrow bring that shaft of sunshine.

 

This is possibly going to sound really trite (and please don't think I'm touting myself as some kind of expert on it) but we will keep tapping into the reservoir of courage we have, however small it seems at times.  You, too, are special, you know.  I see you posting messages of encouragement (you know that the Latin root of courage is heart, eh?, and that it is also a metaphor for inner strength - you are en-heartening people).  You are the sun sending out its rays.

 

You are so kind to keep me in your thoughts - so very generous.  Know that I think of you every day, too - and I'm sure many others on this site hold you in their thoughts.

 

So onwards we go, dear friend.  Traversing the holiday period, keeping on keeping on.

 

Much love

 

Neroli 💜