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Katy398: I’ve tapered too quickly, what should I do?

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Happy2Heal
22 minutes ago, Katy398 said:

It seems pathetic but it’s all I want to hear,  just constant,  constant reassurance, Is that what others experience? 

 

 

that was my experience

I also couldn't tolerate being alone

 

it is NOT pathetic, it's totally outside your control

 

I would put  notes all over my house that said things like Feelings aren't facts 

and just because you feel scared doesn't mean there is really anything to be afraid of

 

 

 

it WILL get better, honest

 

gentle (((hugs)))

 

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Katy398

Thank you @Happy2Heal, It’s wonderful to be surrounded by folk who really KNOW. 

I’ll replace pathetic with intriguing.

I found a quote from @Aeroman which seems to fit the bill. 

 

“when in withdrawal, almost constant reassurance is needed. The temporarily compromised brain struggles to retain any words of encouragement and the heightened withdrawal-induced anxiety and organic fear can override all logic and take you off-track with the “what if?” catastrophizing thoughts.

It’s difficult to understand if you haven’t been through withdrawal. Every day you need to hear that you’re going to be okay.”

 

When I’m in the reassurance seeking mode I

 read through all my introduction post and read all the reassuring posts but for some reason I need a fresh one to help me move on. You’re right H2H I guess it’s  not pathetic just Intriguing.how my broken brain behaves. Thank you H2H you’ve helped me through another couple of hours. 

@Rozon1 My symptoms are mainly emotional anxiety,  loneliness, existential doom and dread and absolute fear.

I did have a nervous tic and jerking which seems to have resolved itself.I  still have a twitch in my eye and a numb hand when I sleep, if I sleep!!!

I really felt calmer last week so being back here with a jolt is a shock to the system. 

Hope symptoms improve soon for you Rozon Sorry you too have the insomnia bug at the moment.

Take care everyone and thank you 🙏Kx

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Dragon

Hi @Katy398 You did feel better last week. Hang on to that. It's your brain telling you that you will get better.  Is this wave, in any small way, easier to bear than the last wave you had ? If you can find a small improvement,, that tells you the direction you're going. If you can't, just hang on to the fact that you had a brief window. It's pointing you to your destination.

Stay hopeful.xx

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Snorky
15 minutes ago, Dragon said:

Hi @Katy398 You did feel better last week. Hang on to that. It's your brain telling you that you will get better.  Is this wave, in any small way, easier to bear than the last wave you had ? If you can find a small improvement,, that tells you the direction you're going. If you can't, just hang on to the fact that you had a brief window. It's pointing you to your destination.

Stay hopeful.xx

Hi K & D

 

If it’s amy consolation, I thought I’d experienced a bit of a window in my awful psychological symptoms last night. For the first time in months, I didn’t have the usual mental pressure feeling. Had the stomach churning and insomnia, but not the mental anguish feeling.

 

Spoke too soon. Woke up to be bombarded with massive depressive feelings and restlessness. 

 

Hope your situation improves. 

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Katy398

Thank you @Snorky , Dragon and @Happy2Heal,

It’s a really bad wave after thinking that This year is definitely  better than last. 

Unfortunately terror, tears and fear are back. I’m frightened of life and end up with SI.  Such a terrible place to be. I’ve tried to search but can’t find what I’m looking for. What is supposed to be happening in my brain during these terrible waves?

mindfulness morning and night is giving me a bit of an anchor but I’m struggling to hold it together during the day. Work is a distraction but weekends really challenge me. I can’t seem to stick to a structure. I am still amazed that this has not hit the headlines and that all the current affairs documentaries are not running stories. Maybe we are just a small minority? 

Thank you everyone for all your valuable support. I am so grateful. 

Warm regards K

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Snorky
30 minutes ago, Katy398 said:

Thank you @Snorky , Dragon and @Happy2Heal,

It’s a really bad wave after thinking that This year is definitely  better than last. 

Unfortunately terror, tears and fear are back. I’m frightened of life and end up with SI.  Such a terrible place to be. I’ve tried to search but can’t find what I’m looking for. What is supposed to be happening in my brain during these terrible waves?

mindfulness morning and night is giving me a bit of an anchor but I’m struggling to hold it together during the day. Work is a distraction but weekends really challenge me. I can’t seem to stick to a structure. I am still amazed that this has not hit the headlines and that all the current affairs documentaries are not running stories. Maybe we are just a small minority? 

Thank you everyone for all your valuable support. I am so grateful. 

Warm regards K

Long time no speak K

 

Can you explain SI? Sorry to be so dumb.

 

Thanks

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Gridley
35 minutes ago, Katy398 said:

Maybe we are just a small minority? 

I would tend to think we are a good bit more than a small minority.  One reason doctors don't recognize withdrawal (aside from being told it doesn't exist by the drug companies) is that when their patients complain of symptoms after coming off a drug the doctors chalk it up to "return of the underlying condition" and prescribe another drug and then another.  

 

Very slowly the information is coming out.  The psychiatric association of the U.K. recently changed its guidelines, which previously denied significant lengthy withdrawal.  Now they warn about the danger of prolonged severe withdrawal.  

UK's NICE health guidelines now caution about severe and ...

Edited by Gridley

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Katy398

Suicide ideation 

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Snorky
2 minutes ago, Katy398 said:

Suicide ideation 

Sorry. Yes, of course. Should have realised after recent episode with my son (drafting email to Samaritans)

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Katy398

Thanks @Gridley I’m fully aware that the UK are slowly beginning to acknowledge withdrawal. unfortunately on the other side of the world surrounded by harsh work colleagues and doctors I sometimes get completely despondent with this whole scandal that I’ve been thrown into. 

This wave is a bad one. 

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Rhiannon
13 minutes ago, Gridley said:

I would tend to think we are a good bit more than a small minority.  One reason doctors don't recognize withdrawal (aside from being told it doesn't exist by the drug companies) is that when their patients complain of symptoms after coming off a drug the doctors chalk it up to "return of the underlying condition" and prescribe another drug and then another.  

 

Very slowly the information is coming out.  The psychiatric association of the U.K. recently changed its guidelines, which previously denied significant lengthy withdrawal.  Now they warn about the danger of prolonged severe withdrawal.  

UK's NICE health guidelines now caution about severe and ...

 Ditto what Gridley said. We are not that small of a minority. In fact, I would say probably the majority of people given ADs who take them for at least a year find it difficult to get off, but most of them, like I did with my first bout, get through the acute period okay and then get hit a few months out with the delayed withdrawal. Which is diagnosed as "relapse" and then they're told they "need" the drugs for life or whatever. Well, now they do, I guess... 

 

Dr. Stuart Shipko sometimes advises people who have been on an AD for more than a year or two to not try to come off them at all because of the aftermath he has seen, although more recently he seems to be toying with the idea that a very long slow taper might work.  Five-year tapers aren't really something doctors want to think about though, it seems like.

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Happy2Heal
43 minutes ago, Rhiannon said:

Dr. Stuart Shipko sometimes advises people who have been on an AD for more than a year or two to not try to come off them at all because of the aftermath he has seen

 

really? wow, that's um, I don't even know what to think about this.

I hope this same doctor is strongly recommended that people never be put on them.

I've heard this drs name before but I don't know, is he a psychiatrist? no need to answer, I'll google it esp since now I'd love to know more about this guy

Update, found him, author of Mad in America, seems like I should have known that LOL

 

here's the only quote I could find about getting off SSRI's after being on them for a period of time: 

The difficulties that occur when patients stop SSRIs, particularly after 5 or more years on the drug, have not been fully acknowledged by physicians and citizen scientists alike.  In my experience stopping SSRIs after 5 years of cumulative exposure can be risky, and I am not advising anyone who has taken the drugs for 10 years or more to try to stop unless they are willing to risk disabling symptoms

 

 

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pinciukas
51 minutes ago, Happy2Heal said:

 

really? wow, that's um, I don't even know what to think about this.

I hope this same doctor is strongly recommended that people never be put on them.

I've heard this drs name before but I don't know, is he a psychiatrist? no need to answer, I'll google it esp since now I'd love to know more about this guy

Update, found him, author of Mad in America, seems like I should have known that LOL

 

here's the only quote I could find about getting off SSRI's after being on them for a period of time: 

The difficulties that occur when patients stop SSRIs, particularly after 5 or more years on the drug, have not been fully acknowledged by physicians and citizen scientists alike.  In my experience stopping SSRIs after 5 years of cumulative exposure can be risky, and I am not advising anyone who has taken the drugs for 10 years or more to try to stop unless they are willing to risk disabling symptoms

 

 

It’s me 3 times tried to tapper and failed. Sad but I don’t believe i can quit SSRI I am on it for around 12 years. In low dose under 10 mg especially under 7 mg I can’t function anxiety 24/7 high blood pressure panic attacks I can’t work I can’t sleep. Last time I had this 2 weeks lost a lot of weight couldn’t eat and so on. Called crisis center because I tried to commit suicide. Then I reinstated and came back normal again. It is crazy and my tappering was super slow. Probably not everyone can quit after long term use. :(

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Happy2Heal
10 minutes ago, pinciukas said:

It’s me 3 times tried to tapper and failed. Sad but I don’t believe i can quit SSRI I am on it for around 12 years. In low dose under 10 mg especially under 7 mg I can’t function anxiety 24/7 high blood pressure panic attacks I can’t work I can’t sleep. Last time I had this 2 weeks lost a lot of weight couldn’t eat and so on. Called crisis center because I tried to commit suicide. Then I reinstated and came back normal again. It is crazy and my tappering was super slow. Probably not everyone can quit after long term use. :(

 

 

I'm so sorry to hear of your difficulties trying to get off SSRI

I tried many times (always way too quickly!!) to get off the SSRI  and it was awful, til I found out it had to be done super SUPER slowly

 

Did you reduce your dose very slowly @pinciukas?

I was finally able to get off of the drug after being on it for about 15 yrs and I've been off now for over 2yrs!!!

and doing great!

getting off was brutal, I admit, but at least partly because, even when I  knew better, I went too fast

 

Dr Shipko isn't saying that people *can't* get off the SSRI's, I think- he seems to be saying that it's very difficult and you need to be prepared for a long slow and often symptomatic withdrawal

 

I think many, if not most, people who want to get off, do eventually get off.

But I don't know if there's any real data on that.

I'm basing my opinion on what I've seen here and from conversations and things I've read elsewhere.

 

Someone should try to track this, but it's hard since there's still so much denial and/or ignorance in the medical and psychiatric communities about psych drug WD difficulties.

 

 

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Rozon1

Hey @Katy398 I was going to ask. How would you compare your life now compared to your life a year ago when you CTd off. Would you say you’ve improved?

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pinciukas
12 minutes ago, Happy2Heal said:

 

 

I'm so sorry to hear of your difficulties trying to get off SSRI

I tried many times (always way too quickly!!) to get off the SSRI  and it was awful, til I found out it had to be done super SUPER slowly

 

Did you reduce your dose very slowly @pinciukas?

I was finally able to get off of the drug after being on it for about 15 yrs and I've been off now for over 2yrs!!!

and doing great!

getting off was brutal, I admit, but at least partly because, even when I  knew better, I went too fast

 

Dr Shipko isn't saying that people *can't* get off the SSRI's, I think- he seems to be saying that it's very difficult and you need to be prepared for a long slow and often symptomatic withdrawal

 

I think many, if not most, people who want to get off, do eventually get off.

But I don't know if there's any real data on that.

I'm basing my opinion on what I've seen here and from conversations and things I've read elsewhere.

 

Someone should try to track this, but it's hard since there's still so much denial and/or ignorance in the medical and psychiatric communities about psych drug WD difficulties.

 

 

Yes last time i tapered down almost 2 years from 20 mg to 5.5 mg. Like I don’t have side effects on SSRI i feel good but i can’t quit. It’s crazy i don’t know what to do i would like to quit but after 3rd attempt i am just afraid to do it again. I see here people having WD symptoms for 3-5 years I am young and don’t want to spend so much time in hell bedridden because those WD symptoms on low dose makes me disable that’s the problem i can’t stay at home because i can’t survive without work and money I can’t stay at my parents place it is very difficult situation. I can try to survive those WD for 1 year but I just can’t stay for so long at home and my WD are bad like i told :(

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Dragon

Hi Katy,    I too am going through a bad wave at the moment as you know. Please look at @Happy2Heal's recovery story(ies). She got better and did a recovery story, then got even better and did another one.🙂 I think I understood her sequence of events properly.....There are also lots of other good recovery stories on this site. Give your attention to those. After all, there's nowhere else to go with it if you've been off too long to re-instate. Also, you have had windows and that's a pointer to your destination. It's long and hard, but you'll make it, so will we all.

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Katy398

Thank you to those of you who are supporting me. It really helps to receive encouragement,  when I’m stuck in these deep dark times. You are right @Dragon I have had windows and I will have them again. Waves seem to trap me in a shroud of despair and I cannot see beyond them.  I seem to have no memory of past windows. Then when in a window I have such faith that I will be able to ride the next wave with a little more ease. Unfortunately I fear even after over a year in I have so much to learn about how to ride the these waves. The WDnormal is easier to manage, the shooting anxiety I have learnt to accept and live with but the terror that grips me when in the  deep, dark abyss continue to get the better of me.I now realise that I’ve had two significant stresses in the last few weeks I wonder if these were the catalyst.

 

Of course 

8 hours ago, Dragon said:

It's long and hard, but you'll make it, so will we all.

Thank you @Dragonsometimes all I need is a heart felt sentence like this. 

 

Best wishes to all. 

We will all heal, we really will  🧡

Kx

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Katy398

I could really do with some words of encouragement. My dread of weekends used to start Saturday morning, this week it was driving home Friday afternoon. I feel so sad weekends are a struggle. My family are really supportive but its hard to find distractions during the weekends. Sadly I thought things had shifted this year,  but no. 

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Gridley
39 minutes ago, Katy398 said:

My dread of weekends used to start Saturday morning, this week it was driving home Friday afternoon.

I understand.  The time can stretch out without distractions.  I hope you feel better soon.  Two weekend distractions that might help are reading success stores and a gentle walk in nature.  We all all behind you and feel for you.

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Katy398

Thank you Gridley. It’s so tough. 

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Snorky

Unfortunately, “walks in nature” do nothing to lift my mood or symptoms. This includes a park with loads of wildlife and a visit to a zoo to feed the tigers. You can imagine that these activities would tick all the boxes for distractions. Not for me though......

 

Sorry to be a harbinger of doom again

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Katy398

@Snorky It’s so tough for me  today which it why I posted this.

2 hours ago, Katy398 said:

 

I could really do with some words of encouragement

 

 

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mdwstrx

Hi Katy.

I've seen some of your posts and read a bit through your thread.

First, my heart goes out to you and others dealing with PAWS.  

 

I am not experiencing PAWS, but I know how awful waves can be. 

I had 4-5 months of waves (and windows), some severe, after Dr. told

me to stop at 2.5 mg. of generic Lexapro.  Thankfully, a reinstatement

worked and I've been able to resume tapering.

 

I know we're all different.  However, I'd like to share what helped me.

  • First and foremost, I asked Jesus for and then received extra faith to believe this:

           Mark 11:24 Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours.

 

It was so, not immediately, but fully within 4-5 months. 

 

The other things that helped:

  1. This website and the incredible administrator, staff and members.
  2. 2.5 mg of propranolol as needed (for the akathesia like symptoms I experienced ) I also had to take OTC nausea meds to counteract nausea from the Propanolol.
  3. No other drugs (including alcohol and caffeine) 
  4. No supplements other than the fish oil and magnesium recommended by SA.  The fish oil really helped me to sleep if I took it right before bed.
  5. No stress in my life (I'm retired)
  6. Knowing I had family and friends in the background
  7. Routine 10:00 bedtime
  8. Relatively healthy diet
  9. Mindfulness (Headspace.com)
  10. ASMR videos including the Christian artists reading scripture which calmed and reassured me.
  11. Daily exercising (raquet sports) which incorporated a social aspect (There was a 2-3 week period where symptoms didn't allow)
  12. Epsom salt baths.

I know we can't compare a CT/PAWS to a CT/successful reinstatement.  

However, I do believe with my whole heart that you have the power  

available to you to overcome this.  Both science and my faith says so. 💜

 

Feel free to pm me anytime if you need to talk.

Md 🌼

 

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Katy398

Thank you so much Md, It’s so kind of you to offer support. I am working on most of your suggestions. Even saving up for new bathroom so I can have epsom salt baths!!

I try to offer support to others which seems to really help give me a sense of purpose in this lonely, disconnected world we get thrown into. Sometimes  when I’m really struggling all I can do is curl up and 

‘lick’ my wounds. Self indulgent but it’s all I can manage. 

Thanks again Md you’re a gem🧡

 

 

 

 

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Katy398
7 hours ago, Gridley said:

Two weekend distractions that might help are reading success stores and a gentle walk in nature.

Thanks Gridley I’ve done both and managed to pop into a shop to buy a winter coat on the last day of the sale. I put it off for a month. All were a challenge but I did it thank you. 

Take care K

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Happy2Heal
44 minutes ago, Katy398 said:

I’ve done both and managed to pop into a shop to buy a winter coat on the last day of the sale. I put it off for a month. All were a challenge but I did it thank you. 

way to go!

ok my ignorance of geography is gonna show now: I didn't realize it ever got cold enough in Australia to need a winter coat!

 

of course I'm in New England USA and we have at least 5 mos when we normally need coats, hats, gloves, boots, scarves, and often layers of clothes depending on the month and how far north you live LOL

 

I was thinking recently how we have a full 6 mos when there's no leaves on the trees. It makes me wish I could afford to move further south, where winters are shorter and milder

But alas, I'm not fond of the heat either, so...........

I like to dream about what it would be like to live where it's never too hot nor too cold, but my hunch is that those places have a high cost of living- or some other flaw that I'd dislike.

I think this is how I make myself happy to be where I am LOL

 

 

was it you who wrote about wanting to have a tub to do epsom salt soaks? I know I saw that recently but now I can't find it...anyway if it's something you wanted to try, I got some relief from just soaking my feet in buckets with epsom salts and warm water.
I don't know if you want to try that.

If you're not allergic, lavender essential  oil is supposed to be very soothing (I think it is, but I'm allergic to it) *edited to add, as something to smell, not ingest

 

just tossing out random ideas, that may have nothing to do with where you're at now but might come in handy at some point

 

you are so sweet and so polite, I admire how you can keep such a sunny disposition while you're going thru this

 

 

 

 

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Snorky
9 hours ago, Katy398 said:

@Snorky It’s so tough for me  today which it why I posted this.

 

 

9 hours ago, Katy398 said:

@Snorky It’s so tough for me  today which it why I posted this.

 

Hi Katie

 

Apologies for my unhelpful post. I’m glad you’ve had some constructive advice to pass the weekend. Ironically, I normally plan a few activities that makes the weekend bearable. V boring, but the odd restaurant meal, we also have regular church service, which seems to help with the loneliness.

 

God bless

 

 

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Katy398

Dearest  @Happy2Heal,Thank you so much for your kind words you’ve given me a real lift on this challenging day.,

Before I moved here I also didn’t realise I would need a winter coat. I used to live in the UK and I have to say I have never been as cold  in my life, as I have since I have moved out to Australia!! Melbourne can get cold but obviously not as cold as the uk. The challenge is that  Australian houses are notoriously  cold, not very well insulated if at all,  compared to the northern hemisphere and they are often single glazed. We live in an old house which needs both. Add the dysfunctional Hypothalamus that WD brings and I’m freezing and it’s still Summer. I’ve invested in thermals and a down jacket to wear inside and out so I don’t go through another winter like last year. 

I am going to try the foot bath right now whilst watching television. I never thought of that Thank you. 

You’re such a support I’m so grateful to have you Here helping me at the moment. I confessed to a friend today that at times this WD leaves me feeling like I’m  in a scene from the film  Trainspotting. Her eyes glazed over I could tell she didn’t believe me. This site is invaluable, only fellow sufferers can truely understand what we go through. 

So pleased for you to have been able to write your Success Story. Congratulations. Take care H2H

Thank youKx

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Katy398

Hi @Snorky

Thank you hope you have a better day today.

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Boris
On 2/11/2020 at 7:55 AM, Katy398 said:

Thank you so so much  @Happy2Heal

I really appreciate your quick response I just need constant reassurance when I’m like this. It seems pathetic but it’s all I want to hear,  just constant,  constant reassurance, Is that what others experience? 

I so appreciate your support.

Kx🧡

 

I remember this so strongly, all I would do is seek reassurance from family and friends. Nothing would imprint onto my brain that was positive, I repeated myself constantly. I was aware of it and that added more anxiety how I felt it changed my image to my friends.

 

Also the dreading the weekend, I had this every weekend for quite a while. I remember people having that Friday feeling at work and me just feeling 10x worse. People could not understand and that's the problem with the withdrawal it seems to be so irrational.

 

Good news is all that went and will for you. I was that bad on paxilprogress they actually said I might need to be on medication! It went from extreme to manageable and not stressing over it. Then it all suddenly just disappeared.

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mstimc
6 minutes ago, Boris said:

 

I remember this so strongly, all I would do is seek reassurance from family and friends. Nothing would imprint onto my brain that was positive, I repeated myself constantly. I was aware of it and that added more anxiety how I felt it changed my image to my friends.

 

Also the dreading the weekend, I had this every weekend for quite a while. I remember people having that Friday feeling at work and me just feeling 10x worse. People could not understand and that's the problem with the withdrawal it seems to be so irrational.

 

Good news is all that went and will for you. I was that bad on paxilprogress they actually said I might need to be on medication! It went from extreme to manageable and not stressing over it. Then it all suddenly just disappeared.

 

13 hours ago, Katy398 said:

I could really do with some words of encouragement. My dread of weekends used to start Saturday morning, this week it was driving home Friday afternoon. I feel so sad weekends are a struggle. My family are really supportive but its hard to find distractions during the weekends. Sadly I thought things had shifted this year,  but no. 

 

I had the same dread of weekends.  For me, work was somewhat therapeutic because it was structured and required me to concentrate on something besides my anxiety and OCD.  It gave me a sense of "control" (at least the illusion of it).  Weekends gave me the time to ruminate and create all sorts of crises.  Like you, I forced myself to go out and do things--very low-key at first--and found I was enjoying myself again .  I also made myself get out in the garage and do some woodworking; again, it required me to shift my concentration from my negative thoughts.  Anything, even if it takes just a few minutes, that will stop the ruminating is very helpful.  Keep trying! 

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Boris
1 minute ago, mstimc said:

 

 

I had the same dread of weekends.  For me, work was somewhat therapeutic because it was structured and required me to concentrate on something besides my anxiety and OCD.  It gave me a sense of "control" (at least the illusion of it).  Weekends gave me the time to ruminate and create all sorts of crises.  Like you, I forced myself to go out and do things--very low-key at first--and found I was enjoying myself again .  I also made myself get out in the garage and do some woodworking; again, it required me to shift my concentration from my negative thoughts.  Anything, even if it takes just a few minutes, that will stop the ruminating is very helpful.  Keep trying! 

 

I did the same with computer artwork. I thought if I'm stuck with this for now on my own at weekends what I'll do is focus that energy into creating something and learn skills for work at the same time. At least I had control over the pixels on the screen. It actually got me promoted once I stabilised.

 

I'm going through the same problem now with bladder caused by the meds.

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mstimc
1 minute ago, Boris said:

 

I did the same with computer artwork. I thought if I'm stuck with this for now on my own at weekends what I'll do is focus that energy into creating something and learn skills for work at the same time. At least I had control over the pixels on the screen. It actually got me promoted once I stabilised.

 

I'm going through the same problem now with bladder caused by the meds.

I actually earned an exceptional performance award at work while in the middle of WD, too!  Maybe channeling all that mental energy to something productive pays off. 

 

The ability to create something is incredibly empowering.  That we can create something of beauty even in the depths of WD reaffirms that we can recover. 

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Boris
6 minutes ago, mstimc said:

I actually earned an exceptional performance award at work while in the middle of WD, too!  Maybe channeling all that mental energy to something productive pays off. 

 

The ability to create something is incredibly empowering.  That we can create something of beauty even in the depths of WD reaffirms that we can recover. 

 

Haha no way, I won a 3d art excellence award right in the middle of a wave as well. 

 

Like you said it gave me some empowerment and I'm sure it helped with recovery.

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mstimc
1 minute ago, Boris said:

 

Haha no way, I won a 3d art excellence award right in the middle of a wave as well. 

 

 

As long as neither of us cuts off an ear, I think we're on the right track! 😄

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