2348 replies to this topic

[gail]

My dear Scrat, what a journey we are going through. It's always reassuring to know the reason why!!

I've given up on this, not completely, but as nothing makes sense either way, yep, I give up.

I've had the feeling since you quit dulox, that antidepressants weren't for you my love.
You've had quite a lot of side effects, a lot, perhaps think about weaning, no? Love

[invalidusername]

Yes. Absolutely. They are no good for me - they have only made things worse.

 

The problem is, I need to stabalise somewhat on the Citalopram - if that is in fact possible - before I start to ween off them. I am trying to work out a plan using amino acids or herbal alternatives that would allow me to start it sooner. It doesn't bother me how long it will take to come off them - as long as I am on the journey I know I will eventually get there...

 

I can completely understand your side as well my sweet. This stuff has been, and will always be about money. I know it has helped people previously, but a majority of the problems that they end up fixing, are problems that were started by medication in the first place! Just like mine two years ago. It was a relapse... caused by pills. When I first came to the forum I was in a pretty good place, but ever since, have been all over the place.. again, because of pills. 

 

You (and Hat) are absolutely right. Pills are not going to be the right path for me. I just need some careful planning.

 

Much love you dear Siddage

[invalidusername]

Hey man...

 

You should indeed be VERY proud of the moments you have come through, and it is a wonderful thing that you can acknowledge that. I think I can be proud of myself for what I have done, but I am still way too much in my head and put far too much thought into how I feel. In fact, I found an article which puts my mindset in 100% of what I am feeling - I couldn't have written it any clearer myself;

 

http://www.calmandco...-checking-feel/

 

This is often what happens after a string of bad days. We become so aware of the levels of turmoil that can wash over us, that we are constantly monitoring ourselves for when these things approach... but why? So we can be prepared for it? The article is so right. We put our bodies under so much more stress by constantly thinking about how we feel from one minute to the next. Every minute from the moment I wake to when I fall asleep, I am asking "how do I feel now?". There is no answer that is better than another. If I feel good, I will fear for when it will turn, and if it is bad, then I will be thinking how long I will be like that. It is nuts! It will calm down, and it it invariably does after around 9pm, so I have a few hours of peace.

 

So your letting go and trusting in God is a great thing and an amazing thing for you to be doing. I can see that by handing it all over can be liberating - to let go of the control that you can never take hold of. It is a no-win situation when you are fighting against yourself! 

 

Today was a little better after a shaky start. I went to see my weekend friend for a couple of hours and had a good chat, and then a 40 minute walk. That was enough for me, and although I was pressuring myself to be doing more, I need to learn that it is ok to sit around an playing games on my phone and read on a Saturday evening! I need to learn how to let these thoughts go. For example, a wave of depression hit when I noticed the time and realised I had been playing a game on my mobile for about 4 minutes. I thought.. what a waste of your life!! But where is the harm? I'v worked hard all week and if I enjoy it, why can't I do that? But I just can't let it go. I feel there should be something more. I don't know if anyone can relate to that, but it is driving me nuts!

 

Anyway. I trust you had the lovely weather a few miles up the road? How was your walk today? Any garden time? And how is your depression treating you at the moment? We have been analysing me for a while now - mostly my fault as I have been talking a lot about my woes!! Apologies!!

 

Love and light my dear brother.

 

God Bless

[LDN]

Hey man, 

 

Interesting article. Helps me get to understand your situation more. I was in a slightly similar situation last summer with my withdrawal, just constantly checking on my situation. But I don't think I've had anything quite like that. The good thing is, as it says in the article, it's something you can treat. You'll get there no doubt. I liked the bit about finding a mission that is important than how you feel, that definitely resinated with me. For me it was growing my spirituality and getting closer to God. Like I've mentioned my aim to arrive at a place where I fear nothing and are able to see through earthly desires as illusions and not let them have any control over me. For it is also about acceptance and being at peace with the level of my disability. As I'm so limited physical and neurological in what I can do, it is an almost constant battle not feel self-pity and jealousy of people who are able bodied. Hand on heart I do get intensely jealous of able bodied people and the opportunities available to them that I don't have. So my work is accepting my situation. 

 

I think last summer was a turning point for me with the devastating withdrawal from the duloxetine. At that point in my life the problems where just so overwhelming. I felt I was trapped on the doluxetine, I had my physical effects of the Lyme, I had the neurological effects of the Lyme, I had anxiety, I had horrifying depression. I felt that was a cross road moment, I either had to accept I was too ill and had too many problems to go on living or just to totally let go of all control over my life, give my self to God, put myself in his hands, stopping taking my self too seriously and stop focusing on getter better but just live solely in the moment. Thankful I chose the second option and spiritually I have since had the most profound and beautiful moments in my life. Letting go may have been most important step I have taken spiritually in my life. Now my focus is just on the mind and readying myself for the next life, as well as living spreading love as best I can with my illnesses. I am more and more transcending the body and brain and feel a sense of peace in the face of fear. By stop trying to get better I have got so so much better. Even being on this forum is letting go for me. I did nothing like this for years and years and could have dreamed I would have ever opened up to strangers. Things got so bad I was like what I have got to loose now. That was the key moment for me. 

 

Sorry for boring you with that, but just thought I would give you an idea of sort transformation I have made in the last few months, despite on paper my situation looking very dire. I don't know if it will help but just in case I thought I would share it with you. 

 

I've been quite up and down to be honest. Yesterday I had a great exposure. Saw my aunt and uncle for the 1st time in 6 1/2 years. We chatted for about 2 1/2 hours. Was lovely and another good step for me. On Wednesday I went to health shop and bought some sauerkraut which is part of my diet. Normally, my mum always has to get it, so it was nice to be able to do it myself. Felt quite a big moment actually. I am gaining so much more agency now. In the past if my parents went away, if we had run out of something I would not be able to get it myself, as I couldn't leave the house. Even recently this was the case. Now it's not like that, so that's a huge step for me I think. I have a lot more freedom now. So in terms of exposures and opening up my life things are going well. The fact that my physical condition is bad and my depression isn't great makes it even more pleasing. It shows that you don't have to wait for the depression to get better before you start doing things. 

 

Never apologies man, it was a joy to be able to help in a whatever small way I can. Obviously I was so upset for you, but it's pleasure to help and you have done the same for me many times!! 

 

So yeah the weather was lovely today. I had my walk, was super busy outside. I think because of the weather everybody was out. The bars and pubs were the most busy I've seen them since I started my walks. Then a bit of garden time, which I love. Was a busy week for me so just trying to slow down a bit. 

 

Really pleased your day went well. That certainly sounds a good effort to me seeing your friend and a 40 minute walk. Well done man! Sorry about your monkey mind, as Rinpoche calls it, but it will improve. 

 

Hope you have a great day tomorrow!! 

 

Love you man

 

God Bless

[LDN]

GAIL 

 

WELL DONE! 

 

TV AND CYCLING!!!! AND THE PARK!!! 

 

oh lalala!! You are doing amazing!!!! Remember don't push yourself but wow you are doing so great, I am so happy!!! 

 

So so proud mon ami

 

Amour Amour Amour 

[gail]

Sweet London,

What an inspirational post to be read and reread by everyone passing by. Too bad I don't have a printing machine. I forget so easily.

I saw a rainbow in your writing. Literally. Just wow! Thank you for sharing. Love.

[invalidusername]

Evening LDN...

 

Yes.. the monkey mind that Rinpoche speaks of. It is that which becomes a real issue from time to time! I also think the part about the mission is important, but it has still got a firm grip on me at the moment. Today has not been good again. It is really good to hear of you mentioning the letting go. You need to drill this into me... you really do. You are absolutely right - even for those people that do not hold the same spiritual beliefs, it is so important to let go. The last therapist I saw.. now a year ago.. kept saying this to me. She told me I was playing a game of tug-o-war with myself - a match that can never be won. She would end every session with the same word... "Drop the rope". I have never forgotten those words.

 

Acceptance I feel need to come first like you say. It is not possible to simply drop this all without first accepting. I think the problem has been compounded by the issues I had with the Mental Health team this week. I was so focused on the negative implications of what they were meant to be doing, that my head has just got tuned into listening to everything negative. I knew they wouldn't help, they couldn't call back, and that they would not in any way tell me what I wanted to hear about scheduling some therapy, but I had already set the wheels in motion and I had to follow it up so they at least knew that I meant business. My parents are away for three weeks so I have no external help. So I spend all day Thursday and Friday with my head thinking all this negative stuff and even when I did get a call back, it wasn't any help and by which time, my head was caught in this trap, so there it has been all bloody weekend! I have been doing a lot of meditation today and when I went for a walk, I was able to tune out the thinking and just think of "nothing" for about 20 minutes. No idea how I did it, but it just happened. Things got easier after that and I now am left with the anxiety of it all starting again tomorrow - but trying to stay in the now. Man, life can be so tough...

 

I can well imagine how tough it is on you too as you speak of the other "able-bodied" people. I think about how this occurs for the rest of us when we see other people out and about enjoying their day with their "normal" brains (!), but you have a double whammy with the physical. Its a brave thing you are doing - every day. I thinking hitting the bottom of the proverbial pit can be a good thing knowing that there has to be a decision made as you did. There is no more to get from what has been done already, and you know that you have to throw in the towel - stop fighting. Why is it so easy to say, but every morning you just cannot know how to put it into practise!? All the time I have that small voice in my head telling me to give it another try tomorrow, I am OK. What will be, will be. 

 

Wonderful news about seeing your aunt a uncle. These things must be such a boost for you. This must really give you hope for the future - you can start lining up all the things you have been waiting to do for the last few years. Again, you not letting depression get in the way is a great thing. I feel I am really getting there with the anxiety, but I do not have the experience with depression. It wasn't until around 6 months into my relapse that I had depression. Even then, it wasn't much at all. It all started after the duloxetine. Coincidence or not, that drug has a lot to answer for.... So what is next on the exposure list?? Wonderful too that it has become infectious and our Gailage is really giving it her all. What a gal, eh? 

 

I'll be back once this damn depression and chaotic thought pattern has let me go, and I will be going forward with my own exposures. I really want to get in there and join in! Just need my motivation and confidence back and I really will join in...

 

Love and light as always.

 

God Bless

[LDN]

Hey man, 

 

So I'm going to try my best to stay calm as I write this LOL! Let's just say today has been brutal physically!!! And it hit me very very hard mentally, how poor my physical condition is. Went on a 22 minute walk and was just complete shattered when I got back. I walk this length every day and never get so knackered, so have no idea what was going on. I could barely move my legs when I got back. The rest of the day my body has been incredibly weak. Really struggling with walking up the stairs for example. A lot of pain and ache in my body constantly throughout the day. When I sit down I feel I can't get up, it's just needs too much energy. Been really out of breath a lot. If I'm honest I wasn't sure I would have the physical energy to type tonight. All my muscles hurting and just sucked of life. Right now I breathing very heavy. 

 

My Lyme recovery was going slow but I was making progress but since last summer with duloxetine withdrawal it stopped and actually I've gone backwards. How the withdrawal has effected me like this I have no idea. All I can say is that before I came off duoxetine last May I much much more physical energy than I do now. So it's pretty gutting to see how much worse I've got. When I came off the duloxetine I was good physically but it's since I went back to 120mg in September that's my physical condition has worsened so much. I'm not sure why the duloxetine is having so much worse side effects since I've been back on than when I was on it before? Also I don't know why suddenly I have got so weak? I can't be sure whats duloxetine withdrawal and what's the Lyme and co infections. When I'm in this state physically even the most basic tasks are brutal. 

 

My parents just got back from a party in Switzerland with some family friends that I was invited to. Looking at the photos on my mum's phone just was so tough. Wishing I could have been there. Just able to live like a young person. The amount of things I missed oh man LOL! Sometimes it just hits hard. I'm working hard on my path to enlightenment but I'm not there yet, and so it's naturally sometimes external things get to me. As I said before I have to admit I'm afraid to dreadful jealousy. My parents where staying in the middle of the mountains, in the sun. Some old school friends of mine where there. I do miss get meet young people. But the path that was chosen for me was one of spirituality, this is clear. The mind is more interesting than anything external, as externals are simply products of the mind!! 

 

I apologise if I sound a bit arrogant, it's just in low moments like this I need to be strong with myself, reminding me of the all good things I have in my life, rather than the things I'm missing out on. Focus on the positives. Clearly right now, my spirituality is in a good place - so I want to remind myself of that to keep my spirits up!! 

 

So thanks so much for putting up with all this self-centred and one sided dialogue! I'm just thinking out loud! 

 

I have to say I'm still really feeling in awe of the fact I felt such peace and reassurance on Thursday when reading you and then to hear you felt a strength with you on Friday. I really felt something out of the ordinary on Thursday night, it really was a beautiful moment for me, just thinking about it gives me so much strength. When I read your post on Friday night I just couldn't believe it! It may be a coincidence and it may sound crazy. It was like I knew 100% you would get through the next day, like I didn't even have a doubt. When I first read your post I was so sad and worried and then suddenly it just completely disappeared! Like I said that night, it was as if God was telling me to tell you that everything was going to be alright. Anyway sorry for these crazy ramblings, it just is quite cool to think that we could have had a spiritual connection. When I read you talking about the strength being like a breeze I was so happy. It was just one of the those moments when you break through the conceptual mind and are just in bliss. I am a bit wary of talking about in case it seems like i'm being self centred. This wasn't the case it's just it's hard to explain man! I guess it was as if God was saying that you and me are going to be alright and all will be well. As if God was saying lay down your worry I will look after IUN, I have his back. If felt like a real moment of spiritual connection between me and you. Ok sorry for that, crazy ramblings over lol!! 

 

I'm sorry about today not being great but the walk sounds great. Just being free for 20 mins, that's fantastic. Sounds good about the meditation as well. 

 

In terms of exposures in this physical state I think sleeping for a month is the next step LOL!!!!!!!!! Not sure my therapist will agree to that! 

 

Will be praying for tomorrow. 

 

Love you man

 

God Bless

[gail]

Scrat and London,

Prayers for you. Candles lit also. And for NM. And all the people suffering. I love you.

Scrat, don't forget to let it be!

[invalidusername]

Thanks Gailage...

 

I am going to need help with this. After the 48 hour nightmare with the mental health team, it has sort of stuck and I can't get it out of my mind. I'm keeping my mind as occupied as much as I can, but it makes me so tired - I just want to lay and relax, but my head just takes over and forces me to keep doing things. I am super tired...

 

Oh, and our LDN. What a nasty 24 hours. Really feeling for you bud. Very strange that we have similar things at the same time! But will be thinking and praying for you today.

[gail]

Perhaps Valium can help to relax you or the special K? Love my sweet.

[invalidusername]

Neither entirely safe when driving to clients unfortunately.

 

Mood is hanging by a thread at the moment. Had derealisation and head fog back today. 4th day back on 30mg - it had to start somewhere. 

 

Looks like I am in a boat similar to Vin, Lyla and the like. I am trapped between the rock and hard place of head funk on 30mg and depression on 25mg.

 

Sigh...

[invalidusername]

Gailage, my love, I have a little poem about Heaven for you....

 

"There in a land of pure delight,

Where saints immortal reign;

Eternal day excludes the night,

And pleasures banish pain."

[gail]

Scrattage, thank you for the poem. Here's one for you

SOME DAYS ARE BETTER
SOME DAYS ARE WORSE
LOOK FOR THE BLESSINGS INSTEAD OF THE CURSE.

Can't wait to see heaven....

[invalidusername]

That's a lovely little one to remember - almost a mantra! Thank you.

 

I have really tried as best I can to find the blessings today...

 

I would love to have that heaven dream that I had a few months ago.. if you remember about the light, the water and the orbs and such?

 

It's such a beautiful place - so much so that our human eyes cannot visually comprehend the magnificent light that illuminates it. Whatever is in your mind, you know it can't be anywhere close!! Everything you are doing here for us all has earned you one of the finest homes in the Summerland you know. Start picturing how you would like it to be... and I am telling you, it will be waiting for you there when you return Home. I promise.

[invalidusername]

Man... i am so sorry to hear of your day. I can well imagine what sort of a blow that must have been for you. I think it hits more mentally than anything else. I had my head fog back today after a week, but that doesn't come close, so to say I understand won't help the severity... I also have no idea how the withdrawal will have affected it, but again, it did the same for me, so who is to know. I have buried myself deep in my spirituality books this evening to give myself a lift. Kratom is all very well, but it is not a long-term solution - changing the mind is what needs to be done. So, I sincerely hope there is some brighter news on the horizon today.

 

Again, you ask why the Duloxetine is worst this time round than the first, and to again take an example from my own situation, this time last year, I was a lot closer to recovery with Citalopram, but now being back on Citalopram it is giving me all these bloody head symptoms. Man... I wish I had an answer for you. Nothing to do with these meds makes any sense to me any more. I just wish I could come straight off them but we all know neither of us can do that.

 

This jealousy... I really don't think you can call it that! There are life's pleasures of which all mental health sufferers are robbed from. We were all once at a position to do everything our heart desires - it is natural to want that back. It is more self-pity and rightly so. Not necessarily in a bad way, but you always want the best for your life. Jealousy is a very negative emotion and this isn't that.. for sure. You are not a "negative-vibe" person! Not a bone in your body is! But you are right to remind youself of all the good things as best you can. Today I got out and did my work, but in the back of my mind was the fact that my head fog was back and my depression was still very much there in the background, but I kept saying to myself... "at least you are here and working"... "things have been worse and you have cancelled work before". I know it isn't much to go on, but I have to find the smallest amount of positive otherwise it will simply take over me. I have fallen into a trap of black and white thinking where unless things are perfect, they are simply not worth doing. Again, I'm sure its the damn pills doing it. But again, I managed the day. 

 

Right, back to my book. I need a top-up before sleep! Really hope there has been a reversal in your physical side. Either way, there will be a quiet prayer for you before I sleep.

 

Much love to you brother.

 

God Bless.

[LDN]

Oh man really sorry to hear about the head fog coming back. Just feel for you so much with this situation you face. Like you said a rock and a hard place. Either depression or head fog. Horrific. I'm so sorry. Wish I could do something to help. Wish I could magic it away. Antidepressants are horrific. For the the 30% that work then great but for others they are just devastating. It just bothers me how this is not out in the open. I mean if I knew about the side-effects, I would have thought long and hard about going on them. The thing is the whole mental health system whether NHS or anywhere else is just built on drugs. Without going wanting to sound too much like a conspiracy theorist, but as were ill we can't really do much protesting against the drug companies, so just like the disabled with the cuts, we are a sort of a easy target. I wont get too political, but lets just say profit seems to be a driving factor in care nowadays and that I think is wrong. 

 

I feel you about the NHS, in that they don't even recognise chronic Lyme disease as a real illness. So I guess in their eyes I faking my illness or something, who knows?? I guess they think that maybe I'm just mental ill, and that makes me think I have a physical condition or something. I've been forced to go to Germany and the alternative route because in England my illness is apparently a fraud. But still it nothing like what you are facing and to be honest hearing about makes me so angry. As I say I'll try not to get political but is does make me upset how mental illness and disability is dealt with. 

 

I think everything your saying is sort of similar to myself at the end of last summer. I'm hoping that like me, you can sort use being a rock bottom as means set your mind free. Obviously this is tough and you have so many pressures. I would say with myself the pressure to stay alive became almost unbearable but now I don't feel I'm fighting so much, more floating. 

 

To me I have found the greatest treatment came from within. I didn't need a magic pill, I had it what I needed already inside me. I just needed to realise this, have my eyes opened to it and nurture it. Placing everything with God has been great for me. 

 

My day wasn't as bad as yesterday, but still not sure what is going on. Still so weak and just so confused. I have had lyme for 6 years now and every day is just like climbing a mountain. Every day is just 100%. You can have a day of with this condition. Just the basics are so tough, and especially when it's been so long. 

 

I just hope you can find some stability for a while. I feel for you so much. I just wish I could take your problems on myself, and free you. I still trust my intuition on Thursday that you will get through soon and everything will be work it self out. 

 

Still well done for work. That insane. Mind blowing your bravery, absolutely sensational. What an absolute legend you are!! There aren't many made like you my friend. So so courageous!! 

 

An absolute pleasure and honour to know you. You are a very very special guy. Rarely, if ever, have I come across such bravery. 

 

Thank you for blessing me with company. 

 

Remember I am always here. Whenever you want. Ok? 

 

We are a team man!!! I am here always, absolutely always!!!

 

I love you so much man

 

I will be praying

 

God Bless

[gail]

Scrattage,

After a very bad day, I find blessings that if they weren't there, nothing would be worth it.

As an example, my comfy bed, that phone call that made me smile, the chocolate cake that was divine, all of you here, your car is safe, you were thirsty and that good cold water bottle, the fact that God is there, your beautiful wife, I read something interesting, I dreamt of orbs, so beautiful. Simple things that are there and that you don't usually take for accounted. Clean clothes, special k time. love you Scrat, the candle I lit for you and a wee prayer etc. I love you Scrattage.

[invalidusername]

Such lovely words Gailage - thank you.

 

You are absolutely right in what you are saying. It is like I am not giving this stuff the right amount of credit for what it does in my life. The issue is that I have a mild state of anhedonia (inability to feel pleasure in anything). This started a week ago and all the stuff with the mental health team and the pressure from university came along at the wrong time and has made it so much worse. I do think about these things, but when they don't give any pleasure, my mind just goes right back to being negative, because not being able to feel the pleasure IS a negative. It is a difficult trap to be in.

 

But having switched dose from 30mg to 25mg for 11 days, then switched back to 30mg now for 5 days, it is going to have an effect. The week before all this happened was good - bit of anxiety, but no depression, so something that has happened in the last 14 days has done this....

 

Much much lovage to you my dear Gail

[gail]

Scrat, I understand what you're saying. No need to feel the pleasure, sure it would help.

But giving thanks is also about things that didn't go wrong, but could have gone wrong. That's my way of seeing it. What a journey that we have to go through. No exposures by myself in the last three days, not strong enough. Too tired to do anything much than sitting and la siesta shortly.

Thank God for la siesta. Earlier, when I was sleeping, in my dreams, there was a dog and a ??? Running around my bed like mad. I would open my eyes then close them again only to see that crazy dog running around my bed. He better stay still, I don't want him to think my siesta!!

[invalidusername]

So today has been considering the options for when I go to see the p-doc next week. I've decided to hold my ground and down-right refuse any more medication. I am not sure what position that will hold me in for the therapy, but I hope that my point is seen clearly insomuch that pills have only done damage, and given this recent anhedonia scare, I can't help but think what almost 15 years of pills has been doing to my DOPA receptors. It was what happened to my father before he was diagnosed with Parkinson's. I don't care what people say, over use of these meds can very easily cause these problems, and I do not want to be another statistic. Seeing what my father has to now go through every day is heart breaking, and I'll be damned if I have t put my wife through that.

 

Interesting that you say about the NHS thinking you are faking - this is the problem with such issues. What you can't see... and all that. The so-called staff at these places just don't see anything wrong when they look at us and just think there cannot be anything "that" wrong. People who have never suffered, never looked into the black abyss of depression.. they simply do not know - not even close - what it is like. Sorry - now I am getting political!! It is clearly contageous!

 

I need to find your floating secret! I really am doing all I can to let this stuff go and not fight. How you have managed after 6 years I will never know. To continue with the struggle and uncertainty. You have done what so many others could not have done. I read an interview with Avril Lavigne earlier about how she described her time with Lyme as the worst time of her life - which having known you, didn't come as much of a shock. It is good to have someone like that become an ambassador for spreading the word, ut it shouldn't take this. But having said that, with all these celebrities coming out and opening up about their mental health problems, it still hasn't helped us at all has it?! Will Young, Dame Judy Dench and all the rest. Bless them, but at least they can afford the best help money can buy! 

 

Thank you for your complementary words. I am proud of today. I had my end of year PhD panel review where I have to defend the work I have done for the last 12 months. Three super intelligent people grill me for over an hour on my research with some of the most difficult questions. My head was in such a mess before it started, and by the end the room was spinning and I couldn't even think straight. But I got the all clear a few hours ago, so I am good for another year! Then had four hours of work and a £25 Tesco shopping trip! I thank God today for every ounce of power that He has given to me to get me through the day. But it was Gail, yourself and NM that helped me through Tesco. I just had a vision that we were all there as the musketeers helping each other through and I just felt the most overwheming confidence to just "be" and get the job done. It didn't matter how long it took, it was just a job to be done. I can get through this because of people right here on the forum. I have subsequently celebrated with a massive pizza and a nice dose of Kratom to reward myself and get some of the DOPA flowing!

 

You may be 60 odd miles away, but from where you are, you help more that you could know. It does make me think positively about what tomorrow will bring which is a big thing for me at the moment. I hope you can also take something positive from this... and you too Gail as I know you will be reading!

 

Love and light to all!

 

God Bless.

[LDN]

Well done man!!! Wow what a day! The PHD then work, then shopping - brilliant! Was the PHD meeting on skype? Since the uni you said was a long way away. So happy you can feel proud of yourself - you absolutely should!! 

 

Feeling just completely knackered tonight and low in spirits. Just a tug of war in head right now between the spiritual path and the materialistic path. Obvious I don't have a choice, the spiritual path is all I have. But I still think about having a normal young life, uni, travelling, parties and even though I know deep down that wouldn't make me happy as a searching soul is a searching soul no matter what the externals, I still feel like I'm missing out. But then again I'm not really missing out, as even if I was well I would be searching for God and enlightenment. Being ill actually is a great tool for bringing me closer to God. Put it this way, if I hadn't been ill would my spirituality be were it is now? No, absolutely no chance. So if my purpose in life is to get as close to God as possible, then surely I should be thankful for being ill? In fact surely I should not want to get better? It's certainly an interesting way to look at things. All things considered God comes first. So if I could magically make myself better would I? I'm not sure. At first it would be great to be able to walk properly and listen to music, but after a while I would realise these things don't bring the happiness that God brought me. I'm no means advocating not trying to get better by the way, but I've always struggled with existentialism and so my case is more complicated than just my body. Healing my body wouldn't bring me happiness, so in a way it's good I got ill rather than someone who would have enjoyed life. I think my spirit is probably more fulfilled now, than if I was healthy. If I was healthy I would still have turned to God in the end, but it would have just taken longer. Anyway, I've said before I'm really weird and so so sorry for that. Just sort of thinking out loud as usual LOL!! 

 

I had a good exposure today. I went to the pharmacy to ask about a blister. It's only about 6 mins walk but I've never been before. It's always been my mum who collected my prescriptions and such. So it was another moment of increased agency. I met the main pharmacist for the first time, who I've spoken on the phone to and he knows about me. I had a good chat with him. I only decided to go when I woke up, the spontaneous exposures are so so much easier. If know what I doing the next day I end worrying so much about it, so I'm more anxious when I do it. 

 

I was thinking about you today and just thinking to remind you of the plan that you and God agreed on. This life is your decision with God, so if you bear that in mind it could help with the worrying. To be honest I'm sure you do think about it a lot, and I knows its much easier said than done, but if you agreed with God to this plan then you might as well just let it be. What will happen is meant to happen. As I say I'm sure you think of this a lot, but it certainly helps me to let go and just trust in the bigger picture. Me and my mum were saying yesterday if God wants to heal me, he will heal me. 

 

My faith is one now where I actually feel such love for God, that I am honoured whatever he chooses for me. If that means being ill, so be it. In fact thank you God for making me ill. It is pleasure to suffer for you. I always say throughout every day what Jesus said on the cross - father, into your hands I give you my spirit. I must say I wish everybody could have the faith I have, I have been so so blessed. Not sure what I have done to deserve such a blessing from God. I certainly don't feel I deserve it. 

 

What I would say as words of encouragement I took me a lot of work and time to get here spiritually. But now it's gives me more strength than any treatment. It's definitely been key to my exposures. I think of God a lot of the time when I am doing them. Bear in mind I am seeing family for the 1st time in 6 1/2 years and going out of the house for walks the first time in about 6 years. It took 6 1/2 years of hard work spiritually but now I'm seeing some fruits. 

 

A joy to be blessed with your spirit my friend. Thank you for listening, it means a lot. 

 

Again brilliant, brilliant stuff today!!!! What a man you are!!!

 

Will be praying 

 

Love you man

 

God Bless

[gail]

Scrat, just read that the FDA warns not to use Kratom from North Carolina (Wilmington) as it contains microbial ...... Just in case that you take it from them. Have a good day my sweet!

[invalidusername]

Thanks Gailage - but no, all of my Kratom is sourced from Far East and each batch undergoes careful independent inspection. I am very careful about that...

[invalidusername]

Hey man....

 

Not going to be the most enlightening of messages this evening - only fair to warn you. I really am in awe of how you have managed 6 years of physical symptoms. Like you said yesterday, it really gets to you mentally. I got to a point today that I just had enough. I just didn't know what to do with myself. All I am thinking is how and when I will recover. Every bloody morning is the same prelude to a 12-hour struggle of anything the day brings before my brain finally decides to give me around 4 hours of peace - and that is more frequently becoming aided by Kratom. It is just too much... and there is nothing I can do.

 

It is a double-edged sword as if I were to forget my responsibilities and just stay in all the time, my mood will get worse, and if I go out and face the world, work and shopping etc, I am reminded how difficult it is, which in turn gets my mood worse. I choose the second option only as it brings money in that we need. I am struggling to see a way forward. Apologies to kick off like this. I sincerely hope things will become better more frequently.

 

So moving onto your own tug of war... I think what you have here is thoughts bought about as a result of a world that is influential in its customs. These things you speak of are stereotypically what a mid-20's bloke is all about. Your place in this world and the sort of person you are puts you very much in a minority. You are the Rinpoche seated in the middle of that third-class carriage among the everyday folk. It is something that you were obviously not meant to do at this time. I am not sure how to address the part about not becoming better. Do you think that you would be drawn into a different life if you suddenly became cured overnight? I don't think you would. There would be times that you would indulge in some of the activities you mention, but you would always come back to what you know in your heart is your true calling - and what bought you to the place that you are now. You are converted. Think of it this way. When a criminal's time is up, he won't opt to stay in prison for fear of breaking the law again. What he needs to do is ingrained. Maybe not the finest example, but best my head can come up with in its present state!

 

Great thing you did with the pharmacy today man! I bet it was quite nice to finally meet your medicinal supplier after all this time - even though they were just down the road! And yes, spontaneous exposures are always the better ones as a majority of the anxiety as we know, is anticipatory. My biggest fears are those that are planned days/weeks in advance. But I am working on it... but again, with all these physical symptoms, it only makes it worse. I can never plan anything that I cannot easily alter in case I have a really bad "head day". This really sucks. I am doing my best not to think about it, but much like you know so well, when it is there for best part of the day, you can't not focus on it. My head is in pain or it is spinning. I challenge anyone to ignore that. It impacts on your ever waking moment. Sorry, I digress again! You can see how much this has got to me today...

 

With regards to God healing you, I am thinking more that we do have choice in this life, but the exact details of what we will go through can change. You will have it written into your life plan here that you will go through physical and mental hardship, but how this came about will have been down to you, and when you are healed will be how you deal with the situation. There may not be a timescale for which you are suffering, it may be that you are here to learn the trials of suffering. That much has been carried out, but with regards to what happens as a product is up to you. If God were to intervene then we would never learn what we set out to learn. I think there are points where intervention would be called for when plans really do go awry and we have deviated substantially from our life plan. That is my take on it anyway...

 

Right. Need to rest. I have ranted and philosophised a fair bit here already! Will look forward to your thoughts and musing when I wake up!

 

Keep the worderul faith you have my friend.

 

Much love and light.

 

God Bless

[LDN]

Hey man, 

 

Oh sorry to hear about your continued struggles. I really really feel for you. I think all you can do at the moment is just focus on very short term goals, like getting through the day. I know that sounds pretty depressing but in dark moments it's just about getting through them. In 6 months time things will not be how you expect. That is one thing i have learned, with mental health you can't predict where your going to be in a week or two, let alone 6 months. So you got it super tough right now, but it won't always be this way. I think you just need to be stable in terms of drugs, as your brain has had so much going on. It's so tough though. 

 

I not really practicing what I preach today. Just horrified by the thought of my future. Just can't face inhabiting this shell much longer. I always try and be super super positive, and I do have a good faith, but when your brain and body are as damaged as mine it's just every day is 100%. Every day is do or die, pushing myself to limit. Walking up the stairs, getting changed, so sensitive to sound, just wanting to sleep all the time, my legs hurting, depression. Like if some one told me this will be better in 4 years or something I would be like fine, I can fight and float my way through that. But in my head it seems that in reality this is it, this shell is what I've got. I been having treatment since 2016 for Lyme and all these horrible co-infections and the whole recovery has just completely hit a wall. Up till the coming off doluxetine things were slowly but steadily improving in terms of my physical symptoms and sound sensitivity. But since going back on physically I'm worse off than when I were I was physically last May when I came off. In terms of sound sensitivity, I could listen to music from May 2017 till last summer, then withdrawal messed with it and not come back since. So I'm actually in terms of my symptoms worse off now, which is really really worrying. What the hell the duloxetine has done man I just haven't a clue, but it messed with my Lyme recovery, which is obviously really gutting. 

 

I have made progress in last 6 months - this forum, exposures, reading - but all that has come from basically my improved spirituality and also therapy. In terms of symptoms I'm doing really badly I'm afraid to say and I seem to have reversed all the hard work I put in to get where I was last May. I just can't see a positive future for me in this shell, how many more years can I take like this. I tried basically everything, so all I can do, is just hope my brain mends itself, there really is nothing else at this point. Chronic Lyme is very hard to treat, so if this my life long term, I'm terrified. 

 

The thought of the future really does sends shivers down my spine. It terrifies me. But all I can do is live in the now and trust God. Think no further can about a month and but think mainly about the plans for the next week and in particular the next day. I often say see where I am a year from now - if there have been any improvements at all, then another year. So at this point I clearly have had plenty of positives in the last year, so it's only fair I evaluate a year later. Got to focus on a long term assessment, looking at days here or there doesn't give an accurate picture. 

 

Well sorry for that, but just good to get it off my chest. Thanks for the analogy about Rinpoche on the train, that was good. It is a very good point in that my life so different from the average person in there 20s, inevitably my resolve will crack at times and I will think I am the crazy one here? You know what I mean? I'm living a life very unusual for my age and also for the times we live in with 24/7 social media and consumerism. I mostly trust in my path, but sometimes it's lonely out here! I've always thought things will much easier when I get older and more people my age are settled down. Missing out on the parties and travelling of course can sometimes feel tough, even though deep down I know I looking for more. 

 

I really hope for a good day tomorrow! Just so impressed my man! Just keep going! 

 

It great to talk man! I do enjoy it so much! You get me, which is nice! 

 

Love you man

 

God Bless

[invalidusername]

Oh man - it is never easy to practise what we preach! We really are singing from the same hymn sheet here - facing the inhabiting of the "shell" as you put it. I say it again, to have gone through 6 years  is unbelievable. I don't know where you have found the strength and hope to come so far. Here I am about complaining of what has occured in the space of only 1 year. There is definately something that happens with the coming on and going off from these pills. It nevers seem the same as it did before - this is clearly because the brain is affected by all the other rubbish that has gone through the system. When I switched from my Citaolpram this time last year, I thought it would be for good. Then 3 meds later I end up coming back full circle only to find it no longer does what it once did. Last year I needed therapy, not a change of medication. I am so angry that this was how it came about, but looking back isn't going to help anyone.

 

This sensitivity to music really fascinates me. I would love to find a means by which it can be reintroduced to you. A way in which the brain can slowly start accepting the stimulus of music again. I was told I could "retrain" my body to take ibuprofen again if I did it a little at a time and that I would go into anaphalactic shock - personally I would rather steer clear from this as having your whole head and neck swell up is not an experience I would ever like to go through again! But... the music might be a little less risky! So I'll start by asking what difference there is between music and dialogue. I assume you can listen to an audiobook? What about someone speaking over music in the background? Are there any styles of music that you would consider worse than others for the symptoms? Not saying that I can do anything to help, but it really interests me to see what is possible as this is the area of my current study. And it will be far less invasive than your Ketamine trials I hope!

 

So you have also seen the same way I am thinking of the future. It is not something that you can apply the "now" thinking to. It is inevitable that we think of the future with this sort of thing in mind. For me it is a question of how long these head issues will be around. I had my third day of returned symptoms again, so looks like it is around for a while. Again, I did what I had to today and was just so exhasuted and it affecting my concentration now. I get home and can barely fix myself food. I really cannot see how I can continue this for weeks ahead. The only thing that cures it is Kratom! I have tried benzos, dramamine, morphine etc... nothing stops it - just Kratom. But I really don't want to be taking this three times a day. Life would be a party (!), but a very expensive party! But until I know, or at least have a better idea of how my brain is causing these things, I need to be careful about what I am feeding it. But the long-term psychological effects worry me more than anything. I clearly cannot let it go easily. My thoughts invade me all day from the moment I wake. Why my brain feels it is necessary to continually remind me that I have this ongoing problem and that life is a mess I do not know. But when I am working, it does cut down to around 40-50% because I need to think for what I do, but as soon as there is a moment when I can stop, it creeps right back in. It is like a form of OCD centred around one thought that I will never get better.

 

LOL - to think you are the crazy one!! Not at all. It is wonderful that you have become who you are. Whether or not you feel that denotes the label of crazy or not! It is something to very much be proud of. The further you can remain removed from the crap that people feel is so necessary in their lives the better. So many people talk about all this social media stuff like I should be worshipping it and simply cannot accept my loathing for it! So you are certainly not the only one in the crazy party here man!

 

Love and much light for you brother.

 

God Bless

[LDN]

Hey man, 

 

Oh really sorry to hear about another day of bad symptoms. So weird that citalopram didn't have these affects last time you were on. These drugs just feel a little like throwing a bomb into your brain, for some people it doesn't go off but for some it is just chaos. I just wish it was more in the public what these pills can do to you. It should be made clear, these pills have devastating side effects, only go on them if you really really have to. A last resort. Instead there given out like candy. It's nuts. I've said before in my utopian plan that everybody would have therapy first and then if that isn't working then you can think about drugs. Like my sister she got CBT, it worked great and so she has never had to touch a drug in the process. No benzos or antidepressants, nothing. That is how it should be done. I'm just so happy she resisted the drugs. She obviously had first hand experience with me of what they can do. Most people don't have that. It is honestly crazy how little is in public about what these drugs do. There is no use going all conspiracy theorist at this stage, but the pharmaceutical industry well what can you say. Look at the opioid crisis - I mean it's heart breaking. I try not to get too angry but I've just seen a story 2/3rds of drug deaths worldwide are opioid. 

 

I'm sorry for bringing this all up as it pretty horrific stuff. My Lyme doctor, is also a psychiatrist and has many stories of corruptions. Some of the stuff he's told me I honestly just wow. I guess after OxyContin nothing should surprise me. Man I'm obviously striving for peace of mind and calm but lets just say society as a whole is in trouble. Man I sound so depressing so I apologise. Moments like this are when I have to remember Jesus's words of forgiveness!!!! I find Jesus such a rock in moments like this. 

 

I'm really sorry for all that though mate, just needed it off my chest. 

 

I really feel you about the worry for the future. I mean as I say I getting much much better at living in the now, but still what the doluxetine has done to me in terms of my recovery is just baffling and pretty tragic. I trying to be really careful what I say here but I'm filled with emotions and just feel violated. 

 

I at the point of trying some really really weird stuff next now. I've completely stagnated for a year now. In Germany they do some pretty way out stuff, which I would probably have to PM you about LOL!! I not got much to loose now. I think it's just being open to everything now. 

 

So with the music, if it's in a passing car or a shop it's ok. But when you can hear it clearly it causes incredible discomfort and just is totally unpleasant and demoralising. My p doc actually suggested the same as you, about slowly integrating in. But before when it's come back it's been like a flick of a switch, just suddenly you notice that music isn't bothering you and then next thing you now your feeling a need to listen to it. At the end of the day there is a clear correlation with me between when my depression gets better and when I can listen to music, especially recently. This really backs up my doctor opinion of brain inflammation. I hopefully speaking to my doctor soon and going to ask if there are any weird suggestions he's got for anti-inflammatories. I take turmeric which is meant to help and glutathione. 

 

I just got to keep get through the days at the moment and focusing all my attention on my spirituality. 

 

I hope you have a good day tomorrow! Then the weekend and feet up hopefully. At least you have the p-doc soon. 

 

I just really hope you can soon get on top of these thoughts - it's horrific! But I've had horrible moments of negative thoughts and come through it, so it will get better. When I was in group therapy for my OCD, there were people with intrusive thoughts. So it definitely is a form of OCD. I think you should make this clear to the p-doc. If they think you have OCD then you might get the therapy quicker! Really really hope things pick up. 

 

Love you man 

 

God Bless

[gail]

Scrat, look at fishinghat and what he endured for 3-4 months of pure hell. He was on dulox and you are not. All this to say that you will get better, we just don't know when. Love.

[invalidusername]

I know... these wretched things. But believe me, when you are self employed and don't have a choice but to drag your ass out of bed to keep the money coming in, some days can feel like hell.

 

Either that or the wife and I will turn up at my parents house with a load of bags :|