neroli: is this benzo withdrawal, or other drugs interacting

[Rosetta]

((((Neroli)))) I'm sorry you are struggling right now.  It will change, but I know that's small consolation.

[Rabe]

22 hours ago, neroli said:

Working at home ramps me up.  As does working in the office.  Anxiety.  Isolation.

 

Feel like another thread of my "normal" life is unravelling.

 

Things to be grateful for:

Hi Neroli...Im sorry about still being at home....but grateful you are able to do that!  The anxiety and isolation does make things so much harder doesnt it?  

I can identify with another thread of normal life unraveling....it is a hard feeling to deal with...but I do feel it will turn around for you...your gratitude will help that I so hope!  Think about my PF (pond friend) so often...and SO SO wish for you to get out and about soon!!!  Love nd hugs to you my friend!💜

[neroli]

Thank you @Rosetta

 

So nice to get your hugs and good wishes. Yes, things do change and of course go up and down.  The legs thing seems to be worsening.  However, today I have had a calmer day, worked at home and was ok about that (not too stressful) and took a half-day sick so I could rest.  A friend took.me for a walk around the block (about 35 mins walk) and that was ok - no major wobblies in the legs and a good talk about life, the universe etc.  So, strangely, I can walk these distances but at home I feel the pull of the muscles and the leadenness.

 

This afternoon I was calm and content to colour and watch youtube videos.  And had the best cup of tea I've made in ages in the afternoon.

 

My garden is messy - even though I have a person come and weed and trim - there's a lot more needs to be done and my shrub at the front still has sooty black mould on it, despite me spraying it two times.  That's the sort of job that drains me.  There are so many weeds in amongst the shrubs and the plot at the front has gone all ragged - it used to be fulsome with native sedges and grasses.  Ah well, I'm hoping that I will improve enough in the coming years that I can put some time and effort into getting it right again.

 

Hugs back at you

 

[neroli]

Hello dear Rabe

 

44 minutes ago, Rabe said:

Think about my PF (pond friend) so often

 

That's a lovely moniker, PF, thank you for that. Yep, we're just over that pond from each other.

 

It's really nice of you to pop in and give me your encouragement (from old French 'encouragier' meaning to enhearten, make strong) - I think there's a lot of heart on this forum.  You are one of the big ones.

 

I, too, would like to be out and about again - but I do have to accept that things are as they are and make the best of it now, not wait for a magical turn in the road which will see me running like the wind again (as if I ever did! ) - a jog round the block would be good.

 

Today has been better, calmer, more pleasant.  I just have to ride those days when it feels so tough.  

 

The half-day off sick was good - that meant I did 3 1/2 hours' work and rested and had a wee walk as well.

 

love and hugs coming back over that pond to you...

 

[Carmie]

Just popping around and sending hugs Neroli🤗

[neroli]

Hello Carmie

 

Thank you so much for dropping by.  It's been a roller coaster week, some reasonable days and the others quite tough going - there's a lot of fatigue, anxiety, leg stiffness and apathy.  I'm being pushed up to my edge again, dealing with feelings of life not being worth carrying on for.  I get disheartened that I feel and am so debilitated now and I don't see it getting any easier if I reduce my drugs.

 

I'll keep you in mind when I'm like this as you have such a lot to deal with and somehow manage to keep your pecker up.

 

11 hours ago, Carmie said:

Just popping around and sending hugs Neroli🤗

thank you, sending some back to you.

 

Neroli 💜

[wantrelief]

 

1 hour ago, neroli said:

It's been a roller coaster week, some reasonable days and the others quite tough going - there's a lot of fatigue, anxiety, leg stiffness and apathy.  I'm being pushed up to my edge again, dealing with feelings of life not being worth carrying on for.  I get disheartened that I feel and am so debilitated now and I don't see it getting any easier if I reduce my drugs.

Oh my friend, I am so sorry you have had such an up and down week (I know even the up days are not up in the normal sense).  I understand the feelings you describe and share them.  I too fear that this is not going to get any easier with reducing.  The truth is that we don't know and I am hopeful there is another side to this for both of us.  We just have to keep hanging on and getting through each day just as you have been doing so bravely.  Let's keep hanging on together.  💗WR.

[Carmie]

1 hour ago, neroli said:

Hello Carmie

 

Thank you so much for dropping by.  It's been a roller coaster week, some reasonable days and the others quite tough going - there's a lot of fatigue, anxiety, leg stiffness and apathy.  I'm being pushed up to my edge again, dealing with feelings of life not being worth carrying on for.  I get disheartened that I feel and am so debilitated now and I don't see it getting any easier if I reduce my drugs.

 

I'll keep you in mind when I'm like this as you have such a lot to deal with and somehow manage to keep your pecker up.

 

thank you, sending some back to you.

 

Neroli 💜

 

 

I’m really sorry you’re struggling so much Neroli, 

 

It’s quite a journey, isn’t it? I’ve gone through lots of waves myself this month, though I’m reaching stabilisation now. It doesn’t matter how small the drops I still get waves, my brain has been so sensitised to all the meds I’ve been on and off and now I feel every little change. The windows and waves pattern shows that our brains are healing though. I always stabilise again after every drop. 

 

I’ve used a million and one distractions again through these last waves. Here’s to good old distraction! 

 

Sending hugs🤗

[neroli]

Thank you dear friend-in-arms - your kindness has brought me tears (and that's ok) for being there.

 

13 minutes ago, wantrelief said:

I too fear that this is not going to get any easier with reducing.  The truth is that we don't know and I am hopeful there is another side to this for both of us.  We just have to keep hanging on and getting through each day just as you have been doing so bravely.  Let's keep hanging on together.

 

I so want to hang on together - capitulating would be letting others down.  I know very well that you have deep struggles too.  Let's hope there is another side to this for both of us - even if I didn't get any better just finding a way to be more accepting would be a help.  But it's not just about acceptance, it's about facing the spikes in the symptoms as they happen and the fears that brings.

 

I read Happy2Heal's victory story last night and thought I'd gleaned some hope from that - healing from loads of drugs and finding life so much easier and 63 (so age doesn't necessarily mean loss of healing power).  It's dissipated this morning in the fatigue.  She mentioned changing her attitude to being more positive at some point and that helping her more than bemoaning how awful she was feeling.  Flip, I'm worried now that I'm bemoaning too much!

 

One positive, I thought I'd not be able to manage it but I did my grocery shopping on my own this morning.  

 

Hope your day is progressing ok.  Wishing you more and more better days.

 

deepest warm wishes to you 

 

Neroli 💜

[neroli]

Thank you, Carmie

 

 

3 minutes ago, Carmie said:

It’s quite a journey, isn’t it? I’ve gone through lots of waves myself this month, though I’m reaching stabilisation now. It doesn’t matter how small the drops I still get waves, my brain has been so sensitised to all the meds I’ve been on and off and now I feel every little change. The windows and waves pattern shows that our brains are healing though. I always stabilise again after every drop. 

 

You are one heck of a brave person rolling with the punches.  I guess one of the reasons I have so much fear of not healing is that I was drug-free for months and thought I was getting through the windows and waves and building up my system again, exercise, clean diet, etc.  and then my system just crashed and I haven't been right since.  The windows and waves pattern didn't seem to work (as a healing sign) in that case.

 

Thank you for your message back to me - I do so appreciate the company of all you wonderful supportive friends on SA.

 

Very best wishes to you, over the ditch.

 

Neroli 💜

[Rabe]

6 hours ago, neroli said:

I'm being pushed up to my edge again, dealing with feelings of life not being worth carrying on for.  I get disheartened that I feel and am so debilitated now and I don't see it getting any easier if I reduce my drugs.

Oh Neroli...I want you to know you are not alone.  I understand how you feel and feel so for you!  I also know how strong you are and that you have had better times that will come around again.  Continue to take care of you my friend! Love and hug, Neroli!💜

[neroli]

Thank you so much Rabe 

 

3 minutes ago, Rabe said:

I want you to know you are not alone.  I understand how you feel and feel so for you!  I also know how strong you are and that you have had better times that will come around again.

 

Yes, I know you understand and that I am not alone - I only have to look at yours and others' experiences on this site to know that.  It's those moments when it all gets a bit much that bite.

 

I know how strong you are, too.  Here's to the better times for all of us.  Hope today is going ok for you

 

Love to you

 

Neroli 💜

[neroli]

@wantrelief @Rabe @Carmie @Rosetta

 

Thank you, thank you, thank you for being there and sending lovely messages of support and encouragement.  I know things are tough for all of us, so it is extra-specially generous of you to take the time to write a message.

 

I know I feel challenged by how rubbish I feel now (with some calm breaks, I know) and I'm daunted about facing years of tapering - with no guarantee of anything really in terms of healing.  And I think we are all in this boat.  So, know that I think of you all every day and value your presence in my life.

 

If I find a really good way to Accept/Surrender to this process and reduce secondary suffering (the mind-created stuff on top of the original pain/difficulty) I'll let you know!!!!!!  I have had very small inklings of "it is what it is" and not overlaying that with "it shouldn't be like this, I am so ill, I might get worse and have to go into a care home" which may have given me a teeny tiny glimpse of acceptance but too small to make a song and dance about just yet.  Acceptance will not remove the symptoms, I know, I guess it is just a technique to try to alleviate worry and not let the moments of life now pass in rumination.  Tough one, that.

 

my love and best wishes to you all

 

many thanks

 

Neroli xxxxx 💜

[Rosetta]

Neroli, 

 

While I am in a wave I can't see any reality outside of the one I am experiencing at that moment.  I can't remember or believe that I will get better.  Once the wave lets up I can.  Otherwise, I'm just distracting myself from my reality in order to get through.  I need someone to say to me: You will get better.  You will get better.  You have before; you will again.

 

You are not going into a care home, Neroli.  You are so far from that possibility right now that it shouldn't be considered, but I understand why the thought comes to mind -- it's all neuro-emotion -- fear.  This wave will let up.  I understand how hard it is that the breaks are too short.

 

As your dose of escitalopram gets lower it will get better, and you will find work less challenging.  That's the activating drug.  You have to remember that people do get better as they taper these awful SSRIs.  I see it happen.  

 

All my love, Rosetta

[wantrelief]

9 hours ago, neroli said:

I know I feel challenged by how rubbish I feel now (with some calm breaks, I know) and I'm daunted about facing years of tapering - with no guarantee of anything really in terms of healing

Aw, Neroli....I so understand how you are feeling - I am indeed in the same boat.  It is true there are no guarantees of anything.  However, I really do think if we can get through this there is healing.  There are so many uncertainties in the journey (i.e. what we are going to experience as we taper, the timeframe, etc.) and this is quite anxiety provoking but I do think the evidence points to us healing. It is just so so hard to feel like this is the outcome when we are feeling unwell everyday.  We have to have belief in something we cannot see or feel which feels impossible, especially when the symptoms are particularly bad.

 

I hope you are doing as well as can be, my friend.  I am thinking about you.  💗WR

[neroli]

Thank you, Rosetta

 

You have a wonderful way of putting perspective on things.  Yes, yesterday was another "challenge" - I'd gone for a walk in the morning and had overdone it, so my legs were very achy and stiff and I was exhausted.  All I could see was a downward spiral.

 

5 hours ago, Rosetta said:

As your dose of escitalopram gets lower it will get better, and you will find work less challenging.  That's the activating drug.  You have to remember that people do get better as they taper these awful SSRIs.  I see it happen.  

 

Thank you for these encouraging words.  I haven't started a reduction in Escitalopram yet - am thinking about doing it from beginning of May and admit it scares me.

 

Thank you for helping me to de-spiral.

 

love

 

Neroli 💜

[neroli]

Hello WR

 

Yes, I know you are in the same boat and the waters get very choppy a times.  You have said it before and I'm repeating it - we are doing this side by virtual side.

 

3 hours ago, wantrelief said:

There are so many uncertainties in the journey (i.e. what we are going to experience as we taper, the timeframe, etc.) and this is quite anxiety provoking but I do think the evidence points to us healing. It is just so so hard to feel like this is the outcome when we are feeling unwell everyday.  We have to have belief in something we cannot see or feel which feels impossible, especially when the symptoms are particularly bad.

 

This is so true - I/we have to develop that belief in the something we cannot see or feel especially when the symptoms are bad.

 

So far, today is relatively calm, I am working from home and seem to be coping.

 

I hope both our days go as well as they can.

 

Thank you, my friend

 

love

 

Neroli 💜

[Rabe]

Hi Neroli...I wanted you to know how much my heart is with you.  I am not going to say much because I am in such a not good place...but know that I truly care and keep you close in my heart my dear friend.  Honestly, I too have actually thought of an assisted living as meals have become a lot, just getting about at all is such an ordeal.  I feel so so grounded after years of finally becoming the bird I so hoped to be.  It is so hard...I watched my birds today and so wished to be one of them.  I wish I understood ... really understood how and why this all happened.  But i dont...for any of us.  

SO much for saying nothing.  Take care, Neroli.  Love and hugs to you!💜

[neroli]

Notes:

 

Legs have been a lot heavier/weaker feeling and lacking energy + aching muscles for the last week or so.  Walks down to 20 minutes wipe me out.  Been a fair bit of tension and anxiety this week as well and wooziness.

 

However, today has been calm, I haven't been out but I've managed to distract well with the knitting and colouring.  It was cold this morning and then the sun warmed things up this afternoon. (It's Good Friday here so no work).

 

I promised myself that I would post something positive while I am in a reprieve from stormy waves, so here are some of my things to be grateful for:

 

I can still shower and dress myself.

I can still walk around and feed myself.

Laura Delano, David Healy, Joanna Moncrieff, John Read, Fiona French, Let's Talk Withdrawal Podcast FB page, SA and you wonderful people, 

Being able to work part-time and from home

Getting assistance with taxi and public transport costs

A nice cup of tea (I can never leave that off the list)

A calm afternoon.

Being forced by lack of physical ability to stop and sit and knit or colour

Wonderful support from people on this site who know what it's like and are so encouraging

Being able to talk to my neighbour whether I'm in a low spot or feeling brighter - she is ok with it all

Getting some sleep at night

Friends who have stuck with me and haven't run for the hills when I've been so desperate

[Gridley]

8 hours ago, neroli said:

 

I promised myself that I would post something positive while I am in a reprieve from stormy waves, so here are some of my things to be grateful for:

 

 

Great post, Neroli!  It's very good (and a big aid in healing) that you're able to be aware of these positive things in your life.

[neroli]

Thank you @Gridley got to try to capture the better bits that rise above this quagmire 🤨

[Carmie]

Hi Neroli, 

 

What a lovely positive post! It’s always good to still see the positives in our life. Thanks for sharing💚

[neroli]

Hello @Carmie

 

Thank you, it's born out of a realisation that I took so much of my health and life for granted before this drug mess, so I am having a go at realising what I still have to be grateful for.

 

Hope you are doing ok with your last cut.  Will pop round to your thread sometime.

 

xxxx Neroli 💜

[neroli]

Notes Sunday 21 April:

 

Yesterday was gruesome - fatigue 7-8; lead-leggedness 8-9; leg muscle aches 4; nausea 5; depression and anxiety spikes 4-5

 

Today was the best day I've had in a long time - no fatigue, lead-leggedness 5-6; leg muscle aches 1-2; no anxiety; no depression; no nausea, no hungers and wees; no loneliness 

 

A calm, relaxed, day on my own pottering around and doing my knitting (even keeping calm after the third time I had to re-knit something I'd done wrong)

 

Things to be grateful for:

A roof over my head, especially as it was heavy rain today

Enjoying my lunch 

Motivation to do hobbies

Feeling awake 

Soothing youtube videos

Skype call with a withdrawal buddy in NZ

Phone call from brother

Warm bed

[wantrelief]

Oh Neroli, I am so happy for you that you had such a good day - no fatigue, depression or anxiety is huge!  It is so good to know your brain can get to this place, my friend.  💗WR.

[Rosetta]

I'm so glad to see you had a nice day!!!  That's wonderful!

[neroli]

Kia ora @wantrelief

 

6 hours ago, wantrelief said:

no fatigue, depression or anxiety is huge!

Thank you for your message.  Yes, it is pretty huge that I could have had such a lovely day.

 

Not wanting to jinx it but I do realise it's window and waves.  But still, it's a great relief to be out of the wave for a while.

 

I am so surprised that I didn't experience loneliness.

 

Hoping your day is going ok.

 

Nga mihi nui (great good wishes) to you

 

Neroli 💜

[neroli]

Hello @Rosetta

 

Thank you.

 

43 minutes ago, Rosetta said:

I'm so glad to see you had a nice day!!!  That's wonderful!

 

It was indeed wonderful - so nice to not have the fatigue to battle with, or anxiety or depression.  It made for a relaxed day - I am so grateful for it.

 

Now, I need to get back to the knitting and sort out a mis-knit (again!).

 

Hope you are faring well.  You just keep on keeping on and seeing some improvements yourself - so good to hear.

 

Neroli. 💜

[JackieDecides]

it's so important to keep being grateful, over and over. I remind myself all the time! 

 

🤗

[neroli]

Thank you @JackieDecides

 

It is good to remember to be grateful for what is.

 

Hope your move goes smoothly and you can get yourself settled again and give yourself a break.  Sounds like more than I could handle at the moment - you are so courageous.

 

Wishing you the best for everything

 

Neroli 💜

[Carmie]

Hi Neroli, 

 

Just read your gratitude list from Sunday. Well done.👍

 

Sending hugs🤗

[neroli]

Thank you @Carmie

 

It makes a difference to remember all the things I have got to be grateful for and to leave aside the losses for a moment.

 

I've always been a bit cynical of gratitude lists, seeing them as yet another way the "worried well" try to make their lives better - but since having my health so drastically affected I can see how they remind me to appreciate what is here right now, so I don't miss the good bits I do have.

 

Hugs to you

 

Neroli 💜

[Carmie]

There are still certainly lots of good things  to be grateful for Neroli, 

 

Gratitude lists help us to still see the beauty and wonderful things around us, even if we are feeling anhedonic or anxious. I always marvel at these big trees near my place that I walk past. They are really awe inspiring. I walked past them today again. 🌳🌳🌳

 

Keep those gratitude lists coming💚

[neroli]

Tough day - so tired, legs like concrete and aching, seeing years ahead of this sh*t again.

 

Worked from home and had some good input into a phone meeting - felt I'd be able to handle the workload for a while yet.  But so exhausted.  At least anxiety and the hungers and wees were low.

 

I am going to have a go at going to the office on Monday - I have to show my face sometime - and have worked out that the neighbour is happy to drop me at the rail station in the morning, then I can get a taxi at the other end to work, see how long I can manage in the office, then either wobble my way back to the station or get a taxi again and the neighbour has said he will pick me up from the station up here as well.  I feel nervous about it.  I know my legs are not as able as they were but I won't know how less able until I have a go at being in the office.

 

I'm holding on all drugs at the moment - going to see how it goes in the next month - think I may have been experiencing quite hefty WD from the benzo taper.  Won't know if things are helped by holding for a few weeks.

 

Weight increasing - lack of exercise I guess and maybe induced by the drugs a bit.  Yuck.

 

So, what are the things to be grateful for?:

 

Managed to change my bed linen (two months since the last change) and turn the mattress

Supportive messages from SA friends

An understanding manager

Enough mental capacity to advise colleagues at work

Being able to rest after working

The sun warming the house in the afternoon

Watching a monarch caterpillar eat its way through the swan plant leaves

 

 

 

[bubble]

3 hours ago, neroli said:

seeing years ahead of this sh*t again.

 

I got to see such thoughts as yet another symptoms rather than anything realistic. 

3 hours ago, neroli said:

I am going to have a go at going to the office on Monday

This sounds good. To challenge yourself a bit. You can always stay at home but you never know. Sometimes I can hardly get out of bed and then do fine once I'm at the office and have that special feeling of victory on my way back home.

 

4 hours ago, neroli said:

have worked out that the neighbour is happy to drop me at the rail station in the morning

This is another great plan. I also walk to the rail station, then take a train for 10 mins and then walk for another 20 minutes. Sometimes I'm so wiped out that I also take a taxi. 

 

4 hours ago, neroli said:

Won't know if things are helped by holding for a few weeks.

good thinking. We can always taper but exploring the potential of a hold takes time. 

 

4 hours ago, neroli said:

Weight increasing

Last year I went on a relaxed LCHF and managed to lose 6 kilos although I believed it was drugs that were causing me to gain weight. 

 

4 hours ago, neroli said:

Watching a monarch caterpillar eat its way through the swan plant leaves

 

I love your gratefulness list! this one is so picturesque  Life is beautiful despite everything. I would add the ability to notice such little wonders and get at least some pleasure from them. 

[wantrelief]

Hello my friend,

 

I am so sorry it was such a tough day for you.  It is impressive you were able to keep going with work despite how you were feeling.  

 

It is understandable you would feel nervous about going into the office on Monday.  I hope you are pleasantly surprised at how it all goes.  You've done so well managing a plan for how to get there and back.  

 

I do so hope holding will bring further stabilization for you.  You have had some better days as of late so I am hopeful this will lead to more.

 

I am thinking about you and hoping today is a better one for you.  💗WR