Been Off For 8 Weeks
Posted 24 April 2019 - 08:12 AM
Posted 24 April 2019 - 11:05 PM
IUN man sounds like you have so much going on! The way to care for your wife is so beautiful with all you have going on. It's very moving to me your strength.
Firstly about your wife I had extreme OCD in 2012. I had to be hospitalised as I was days from taking my life. Thank God they had a bed and I was saved!! I had great CBT and exposure therapy in hospital and within about 3 or 4 months I was mostly over it. It's never come back since but is always in the background when I am extremely stressed or mentally over worked. I got very very lucky! I had very extreme OCD, so if you want hope for your wife I'm living proof you can conquer it. Obviously, I don't know how your wife's OCD manifests itself, but if you have any questions at all, please ask or PM. I'll just mention Prof. David Veale, I was under him. He was brilliant and he has written a book on OCD. I haven't read it but he really knows OCD. Please send my wife my best!
I'm so sorry about your sleep, wish I could do something!! I had heard that Lexapro was not meant to have withdrawal, so sorry about that. I'm always here to help my friend!! I feel your strength through the laptop screen!!
Love that anecdote, very moving! I found a little stone on the floor the other night, it might have come in on my shoe, but nevertheless I've kept it! It was after I had heard gail's amazing story!
The way you describe depersonalization is exactly what I'm feeling! Like living in a dream, as I said. It's scary when it's combined with such brutal depression! I'm worrying about my safety because I don't feel in control. I went to my therapist today and it was tough. I was so depressed this morning and I was really in such a bad place when I saw her. Feeling bit better this evening, but exhausted.
Hope gail is ok! Love you gail!!
Also saw on another thread you have long hair. I used to. As you say there is not too many of us in England! I'm picturing a bit of a John Lennon hippy vibe, is that close?
Love and prayers too you!! Keep strong. We're in it together my man!
Posted 25 April 2019 - 07:30 AM
Just a short reply here. Can you spare a few prayers for me, thank you. I need them to be go Through this harsh period. I will update tomorrow when I know better what's going on. You'll find me in my GOING HOME thread. Thanks love.
IUN, long hair, I love long hair on a man.
Posted 25 April 2019 - 07:42 AM
- gail likes this
Posted 25 April 2019 - 11:24 AM
This is so appreciated, my eyes are moisty. Thank you so much! Love
Scrat, going through a lot here with the bad news of the bone scan. I will know more tomorrow. Son and ex husband coming to help me. Your prayers are so appreciated. Lovage
Posted 25 April 2019 - 09:09 PM
Gail I have been thinking and praying for you all day, even before I saw your post just now. You are so special! I wish I was with you right now to help! I feel a real bond with you and feel so much love! I will praying and sending all my love and positive energy! I feel so honoured to have met you, I really do! Remember
THE HIDDEN GRACE OF PAIN AND SUFFERING
HANG IN THERE, KNOW THAT YOU ARE NOT ALONE.
THERE'S A BIGGER PICTURE THAT YOU WILL SEE ONE DAY
THAT WILL BRING YOU PEACE AND UNDERSTANDING
LIKE YOU CAN NEVER IMAGINE.
GOD BLESS AND SO MUCH LOVE!
Posted 25 April 2019 - 09:49 PM
Hey IUN that's so cool are you a beatles fan? My Lyme disease doctor is a HUGE fan of John Lennon and so recently when I'm up to listening to music I have going through a lot of the beatles!
So I was under David Veale and within minutes of meeting him he completely got my condition, didn't seem fazed at all and said 'we can treat that, no problem'. I've heard that a lot from doctors but in this case he was completely right! So my personal experience of him is top class! Within a few months I went from my death bed to going out every day and all over London. I would say it's the one time in my illness when I have made a very quick recovery. I actually often forget I had OCD, I guess that shows how well I recovered! Obviously that's just my personal subjective experience. So your wife behaviour sounds very familiar. For me as I say it was very extreme. My whole day was rituals and compulsive behaviour. It affected every facet of my life, meals, getting out of bed, washing hands. I have nothing like that anymore, haven't for years.
Yeah I'm going to bed later and later at the moment. I stay up all night. In a bit of rut. I haven't got the energy to fight it with so much going on. Go to bed at about 8 am at the mo and get up 4 pm. I know it's crazy and I do feel great shame over it. But I will be able to change it, just at the moment got so much else to face. Also, I like the quiet. I go to bed late anyway but would prefer 6ish to 8. It's not my main concern at the moment but something to work on for sure!
My therapist is very kind and helps with exposure therapy and anxiety, self worth and confidence. My psychiatrist is brilliant for depression, totally gets it and is so understanding about. I emailed her last night and she sent back a lovely email this morning. I have a really great bond with her and that I can tell her anything. So in a way she is a 2nd therapist as well for me. I'm very lucky that I got a good team around me. I hadn't had therapy since my OCD till I started in January this year. I hope you can get yours sorted, will make a huge difference I think. I get similar thought patterns to you before and therapy helps so much by bursting the bubble and making them seem less scary and more normal. Do you think you will start soon?
Great news about the sleep!! I'm in awe of you I must say. When I'm struggling I go 'Think of IUN and how brave he is and what he has to face, and how courageous he is with his challenges'. Your right that finding this forum has been a gift.
Off to Oxford tomorrow for my ketamine assessment. Not looking forward to the journey in friday traffic. Dreading it actually!
Posted 26 April 2019 - 06:03 AM
What a beautiful post. Improvement here and there. You remind me of myself, battling mental issues at the same time of physical issues. One would be enough, don't you think?
Today is a big day here, meeting the oncologist with my supporting team. So many bones have Mets, we'll discuss the WHAT TO DO WITH WHAT. Thank God for my son Jayson and Pierre, best friend, ex husband. Good listener. How many times I have cried over the phone with him, they live almost two hours from here.
And I am sooo grateful for my forum team. No, I am not alone! One day, I will see the bigger picture behind all that suffering.
London, thanks for listening! Love
Posted 26 April 2019 - 03:31 PM
Posted 26 April 2019 - 03:52 PM
I'm sorry to hear about your sleep problems IUN ..
I was having that as well for months and finally am able to sleep 6 to 7 hours a night even with waking up once but go back to sleep again right away.
then again there is the occasional trip I must make because one of the dogs wants to go out 😡
Posted 26 April 2019 - 09:47 PM
I love you gail! I hope everything went well today. You were in my thoughts and prayers all day and last night. I woke in the night and was praying for you as I woke!
Yes very similar! One would be hard enough! I was in hospital as well today for my ketamine assessment. So happy you have support with you! All of us on here are with you as well!!
so much love
Posted 26 April 2019 - 10:29 PM
IUN oh man I'm so tired lol!! 4 hours in a car today with all the traffic in London on the way out and in! I got the green light and so I start in 5 weeks, first week of June. The longest patient the Prof. had was 6 years, so he said he doesn't know the long term effects, it is a risk but then antidepressants as we know aren't exactly angels!!! I've had 15 ECT so don't think this will be as bad, wasn't fun having your memory messed with!! Thankful had my mum and dad to do driving and some company. Was actually a good exposure being out of the house for so long, went into a petrol station as well. Nice to some green fields as well! Yeah it was at an NHS hospital but it has to be funded. I think because it is only place in UK that advertises it and ketamine isn't on licence for depression yet. I think I'm part of an ongoing study, linked to Oxford Uni. The Prof. said during the infusion people some leave their bodies and can even have an NDE. So maybe i'll have some stories to tell after lol!!
Yeah I'm very very lucky! Having had an almost 6 year gap since my last therapy before this Jan it was long gap. It's so tough to find the right one though, so I hope and pray you can get sorted soon and get a good one. How is your wife? I hope she doing ok. Does she plan on getting therapy? If you want I PM you with more details of my OCD if it would be useful? Since it's literally the one thing I've managed to recover from, it's a nice reminder for me that you can overcome things that seem impossible.
Man really sorry about your sleep. Gutted. I'll keep praying. Hopefully, it'll blow over after a bit longer off the Lexapro. 'it is just that I want to run home, draw the curtains, jump in the bed and lock myself away from everything and everyone.' - I relate to this so so much! Pretty much my default mindset for years! In fact a few years ago when I was at the worst of ME and lyme that's what I basically did. I was so ill physically it meant I could just sleep and sleep. Some days 14 hours. Your very brave and thank you so much for all your positive energy! I really can feel it and it means so much!! We're in this together my friend!!
What sort of stuff is lounge? I like portishead which I know is trip-hop but has maybe a chill vibe. Also which beatle where you in the band? I guess John Lennon if you have the look.
Sending love.I hope you realise how inspiring your life is to me. I am learning so much from you!!
Posted 27 April 2019 - 04:08 PM
Posted 27 April 2019 - 10:57 PM
Must say feeling pretty bad today! Something the psychiatrist said assessing me really bothering me. I told him I was too ill to take up my uni offer. We were then talking about negative thoughts and he said along the lines of 'When have thoughts that you are a failure, to a degree that's true because you didn't go to university'. After in the car my mum was pretty angry. It's just so strange to me how me having an illness (depression) is failure? It not like I chose to be ill? I mean i'm just struggling with the logic of it? And to come from a Oxford professor? I'm too sensitive for this world I think. I'm breaking my back every day to get through and I told I'm a 'failure'? I understand that there's a context to what he said, but why even go there when I'm fighting for my life. It would be nice if doctors could occasionally praise your bravery or fight. I'm too thin skinned I know, but I don't what to be somebody without a heart you know??
Anyway just really worked me up. Not sure I even want to do it now, which is very juvenile isn't it. The interview was a lot of slightly aggressive questions - 'why do you need it?', 'what would you do with it if it made you better?'. I had to be switched on because I wanted the treatment, and needed to give right answers. It's like I'm suicidal and i've got to put on a brave face and do a job interview.
I've lost all motivation now, like why bother if I'm just going to be called a failure? Might as well just go to bed and not see anybody you know. Still I made myself go out in the street today and walked till the end of the road, so I haven't given up just yet lol!!
So basically you have 3 iv's over 3 consecutive mondays. Then after a month the doctor will call me and asses where I am it and if it worked. Then we go from there. I think if it works you continue to have once about every 4 to 6 weeks. It's not ideal by any means, and I wouldn't do it if things weren't desperate. Also I really don't want to have ECT again, can't face losing my memory again. If this doesn't work then I going to try rTMS. ECT really last option. I have to be proactive with this depression, I have a responsibility to my family to try everything.
If you want to do it your GP or psychiatrist to send a letter of referral, that's about it.
I don't get the NDE bit because your not dying? I've read people have seen God etc. while having infusions. I guess works similar to LSD.
Man sorry about your sleep. I guess were both feeling fed up today!
I can't listen to music right now, I'm too sensitive to sound but when I can I'll take a listen.
We've got to keep each other going right now!!
Posted 28 April 2019 - 02:13 PM
Posted 28 April 2019 - 09:58 PM
No worries IUN it comes and goes. Been without for a while but when it comes back i'll check it out.
Also I was paying for the meeting and without my permission they were two students in the room watching?! He said at the last minute is that ok, i wasn't happy but couldn't say no. I felt like a zoo animal!! Doctors need to remember we are HUMAN BEINGS as well!! I've got a heart, I'm not a robot. Felt just like a lab rat. It felt abusive, like poke me here and see what happens. The doctor also said I'll have my condition 'for decades', maybe that's true, but not very encouraging. He only met me for 30 mins and he knows my future! I want his crystal ball!
My depression makes me feel like I'm already worthless but now my brain just saying 'FAILURE, FAILURE, FAILURE'.
Had awful day as well IUN. Crazy anxiety all day. I had a nap, and it was like my body just going complete nuts. Felt like my soul trying to leave my body. Your words mean so much to me, trust me!! You sound like your going through hell. I relate to your feelings so much. I have so much empathy for you, it's so horrible isn't? You wouldn't wish it on anybody. Unless you've experienced it, it almost impossible to understand. It's so hard to describe, but I feel you 100%! I've felt too tired to go on for about a month now, but still just here. I making myself go out in the street everyday now, it is very very scary some days but I just force myself, I have nothing to lose anymore. It has taken years to get to this point though. It's the 1st time I'm walking out in the street since Lyme in 2013. So nearly 6 years.
Yesterday I was outside and had this thought 'God is with me, I have nothing to fear' and suddenly I felt much, much better. It was a beautiful moment. I'm trying to hold on to that moment, just thinking about is making me feel good. I don't know if it was a religious experience but it felt like I was saw the truth and everything felt less scary. God is just giving me so much strength right now, I can feel it. Finding God has been a revelation. I was just want to say thank you God, I love you so much!
I'm sorry if my PM was disturbing, it's just I wanted to show how I got cured even though it was so severe for me. I just wanted your wife to know that there is so much hope, as I am proof. Also it was nice for me to get off my chest, thank you for listening. It reminds of what I have overcome, which helps the present pain. But again sorry, and god bless you for your support.
I had one more thought, have you heard of online CBT, or an app? I haven't tried it, but I've read about it. That and Dr. Veale's book might in the short term be a nice start. Would mean she could do it from home. Just an idea. I would say exposures a very important, but it has to come from the individual. Encouragement is great and very important, but as you'll know you can't force anything and people need space to breath and do things at their pace. There is no one way of doings things, everybody has their own pace.
Thank you for everything IUN. Sending your and your wife nothing but love. Your giving me so much strength right now, so much!! Were in this together!!
Remember 'God is with me, I have nothing to fear'.
Posted 29 April 2019 - 09:30 AM
I read your post with gusto. That moment with God, cherish it. I envy you. Such strength coming from a young girl of 26. Your writing and describing are a great force for you.
Don't forget me, I'm one of the muskateers even if I don't write long posts. It's not in me.
All that to say how brave you are. And IUN is of great consolation. I'm proud to be a muskateer! Peace is at the beginning of the end. God is with me, I have nothing to fear.
Posted 29 April 2019 - 05:58 PM
Posted 29 April 2019 - 09:38 PM
GAIL I never forget you, trust me! Your always in my thoughts.
Your posts always fill me with warmth! Your a truly special person. Your heart is so big. I am too so proud to be one of the 3 musketeers!! I wish I could be with you right now. Having to fight depression and have all your physical pain. I know how hard it is right now for you. You a are in suffering so much and yet you can still send me such a wonderful message! In you I can see Jesus. In some people he shows himself more, and you are one of them. This week ahead I am with you every step of the way. Imagine that I'm holding your hand through the tough moments. Because we both have physical and mental pain, like you said we have this special bond. You help on my journey to God. He showed himself to me through you. I really hope you know just how much strength to you have given me. Meeting you on here has life changing for me.
When I felt God it was not just me but everyone. So I had to spread his word. I felt it in my bones that all will be well and must spread the news.
God is with me, I have nothing to fear. It say over and over again. Thank you God for sending me Gail!!!!!
You, me and IUN - 3 Musketeers!!!!! I am very emotional. We were all send for each other! Lets get through to Friday together and then you can go home.
PS. I'm a guy, but sorry if I haven't made that clear!
I know I write a lot sorry!!!
- fishinghat likes this
Posted 29 April 2019 - 10:16 PM
IUN hey my friend. Yeah I take 2 0.5 clonazapams before afternoon nap and then 1 0.5 before bed. I also take chlorpromazine 25mg at night before bed. I was on more in the past, at most 4mg clonazapam a day (8 0.5mg), but I would get stressed out on deciding when to take one. I would be asking myself 'I am I anxious enough' and that just meant I spend all the time thinking about it. So last year I started to cut down, and now just stay on 3 0.5 a day. I like taking it at a set time because then I don't have have to overthink the rest of the time. My physiatrist has offered me to take more if needs be but I so far have coped. The chlorpromazine helps anxiety a lot, but makes my muscles weak. Ideally I'll stop it, but only when my depression is better. It's a trade off I have to accept.
I'm sure it's the Lexapro withdrawal. It will get better. Man things are so so tough for you right now. Your words hit home to me. I feel you 100%. Your doing amazing. You should be very very proud of how your doing.
I'm sorry about your wife. I was worried I might trigger her. I'm so sorry. I suppose the good thing is she has been able to tell you some of her story. That's a great start. Some people just can't open at all. When I first got depressed I didn't talk to anyone about it, not even my parents, not professionals, no one for about a year. My parents were pleading with me to go to see the doctor, but I flat out refused, until finally I broke down at Heathrow before a flight to America and thought I can't do this. I then told them everything and agreed to get help. But it needed that catalyst of about to get on a flight and leave them to do it. Opening up is very very hard, but time in my case has shown it to get easier. In a way you have to just have trust God's timing. I feel for your wife and admire her bravery very much! She's has you!! Like gail you make me have faith in the world. You are very unique, sensitive person. It is truly a wonderful gift I have found you. Though we have found each other through pain, and so happy to have found you two.
I have you in my thoughts when I do my exposures. Knowing how hard you have to fight each and every day and then still can come on here and give me so much love and support. It's gives me a huge boost of strength. Connections in moments of pain are so important, so thanking you God for guiding me here!
'We made plans to live what we are living through. For some reason we need to live through this to benefit us greatly when in spirit.' - This 100%. Remembering this gives great strength to me. The peace we will feel one day will be indescribable. And everything will be wonderful. I've read this from Jesus, prophets, mystics, people who have had spiritual or near-death experiences. They all say the same thing. It will be nothing but love. I can feel it in me deep down.
Today was a better, less anxiety thankfully. Got psychiatrist tomorrow. Hope that bath helped!!
We'll keep working together.
Posted 30 April 2019 - 01:45 PM
As always, a beautiful post. Today is less heavy, keeping busy by preparing for my vacations.
As it was said, we share a bond brought by suffering.
When I learned that I had six months to live, last June, I wanted three things. To be rid of the depression, for my kids and friends to believe in God, lastly,for people to see God or Jesus in me. My three wishes. You reminded me of that when you said that you saw Jesus in me.
Thank you, one wish has been realized, I hope for more to come.
The second wish is coming around, when the kids say to me that they have prayed for me. Never heard that on my past surgeries.
The first wish, well, to be free of depression, has not been realized yet. I'm waiting for a miracle. If I had lived in the time of Jesus, be sure that I would have gone running after him to touch his tunic. And beg him to deliver me from those mental issues.
I'm still begging, you can't imagine how! Years and years of begging. Now, I need a siesta, again thanks London!
Posted 30 April 2019 - 07:18 PM
Posted 30 April 2019 - 10:22 PM
I would be the same Gail. I always wish I was alive when Jesus was. Though he lives on, through people like yourself and IUN! Exited for your vacations! You have a real gift - I see Jesus so much in you!
IUN - bad bad day here. Horrific combination of depersonalisation and piercing depression. Found it hard to connect with my psychiatrist emotionally, I'm really struggling to connect with people right now. Just my brain not attuned to interaction. Feel like I'm talking to a wall. I feel so so lonely over here. I was thinking today 'i'm completely alone'. It's like the loneliness is worse when I'm with people, because I'm not 100% there with them. It terrifying and I'm just struggling to handle it. The wave after wave of depression is just dehumanising. I'm just getting pummelled with it. Like it can't be healthy to have to withhold such intense sadness. Somehow I have to march on. But my oh my it's tough out here!
Feeling pressure as well over the ketamine. Got my confirmation letter today and it said I need more of a plan for the future. I just can't face that right now. It's one day as it comes, not a time for big grand schemes. I really want the treatment, but feel very uncomfortable with the pressure exerted on me to 'make the most of it'. So I'm a bit stuck.
In terms of fear, for me it's being uncomfortable in my condition. Feeling the stigma around mental health. I fear humiliation. I fear being judged. I fear seeing people I know and having to explain my situation. I fear I'm too sensitive to cope. I fear the uncertainty. I like having as much control over my condition as possible, going out feels losing all control. I'm like your wife, I fear if people look at me they are judging. I feel cut off, like I'm this crazy guy who should be locked up. The old attitudes to mental health in the past and in other cultures I find weighs on my shoulders very very heavy. I always think I would locked up in another country. I feel a sense of being cut off from the world. These are the things I'm trying to overcome when I go out. I'm at the point of fighting being more of an effort than going with the flow. What will be will be. I trust God, I put myself in his hands. It's liberating, to just let go and let the stream take you where it takes you.
That the key for me now - it's more effort and stressful trying to control everything than just letting go. I still feel so much fear but just push on. I'm just too tired to fight everything anymore, so I just let life come at me and do it's worse.
Got therapy tomorrow.
Lots and lots of love brother. We're both stuck right now. At least we can share our pains. I feel what you say so much.
Posted 01 May 2019 - 04:07 PM
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