• Tom Robinson

Supporting others through my lived experience: a demonstration of what I am doing with my time!

I wanted to share today, some of the messages I’ve been receiving since I started this new blog in January, as a demonstration of what I'm trying to achieve through my writing.


I reply to everyone who makes contact with me because I know that I would much rather have heard from someone who’d been there than a profession with no lived experience when I was literally 'dying to stay alive!'


I also know that some of these people are in terrible pain and suffering and they really need to hear a response to their message immediately, so I take great care over my replies and take it very seriously.


I am supporting both my doctor's patients and people who contact me directly through the blog via email and direct messages.


All names and personal details have been changed and some messages have been slightly amended to protect each person’s anonymity.







Dear Tom,


As a fellow sufferer, I just wish to commend you on your bravery for speaking out on this subject. I will be following your blog and will be happy to help in any way possible to spread your message. What an awesome person you are. A true warrior!



Hi Lucinda,


Thank you so much for the support. It means so much! I represent everyone, but especially those with mental illnesses. Keep an eye out for what is to come because there’s so much I want to do now that I’m better. Any sharing or spreading the posts or link would be great and would be an enormous help!


I’ll be sending out messages through the blog to tell people how they can help too.


Thank you for your message.


Best wishes,


😊Tom









Dear Tom,


I started suffering from anxiety and depression after losing someone close...I have been riding all my life but I don’t compete and now I have started with fear and anxiety about riding and have panic attacks about hacking out and have started to make excuses and reasons to friends about riding...yet my Horses are my World x

What causes anxiety?



Hi Jessica,


For me it's when I'm depressed but I try to force myself to continue with things. The anxiety comes from the self-doubt I feel when depression takes away my true self and ability.


So sorry to hear your story.... self-confidence is something that depression and anxiety take away. Try to think about who your most empathetic friends are and talk to them. Being honest helps to alleviate some of the feelings.


Keep in touch,


Tom 😃









Hi Tom,


Your story has been amazing to listen to and connected with me straight away. Thank you so much for sharing. I was wondering if you had any advice on how to find a mental health doctor for someone who feels they aren’t being understood or getting the help they need from their GP.


Thanks so much.



Hi Laura,


Thanks for your message. Your GP should refer you to a psychiatrist on the NHS. Ask for that first and if you still feel you’re not getting anywhere then let me know because I have finally found an amazing psychiatrist – the only problem is that he’s private and very expensive. I hope to campaign for equality of care private / nhs in the future so please hang in there.


Don’t suffer in silence, push for what you want and need because unfortunately GP’s are not trained sufficiently in mental health in my experience and there is no unity in psychiatrist's approaches to treatment!


Be the expert of yourself and if you’re not being listened to move on to someone else until you feel that you are. That’s how I’ve survived this terrible illness.


Hope that helps and let me know how you’re getting on.


Best wishes,


Tom









Hi Tom,


Thank you so much for asking! I feel I'm getting worse and worse. Doc Zamar said I needed a neuroleptic which could take 6-20 weeks to kick in without which the treatment won't work.


I want to give up as I don't think I can stay alive that long- sorry I know that's heavy. And living at home is doing my head in. I want to move out but am too suicidal. How did you cope with being at home? What did you do with your days?


Thanks for writing to me!



Hi Melanie,


So sorry to hear you are still feeling terrible. I too felt as though I could not stay alive one moment longer, but Dr Zamar did get me well eventually, and I am SURE he will get you there too.


Please, Please, hang in there ... I know that’s easy to say and almost impossible to do but I am so sure you must be nearly there!


What dose of Levothyroxine are you up to now and what neuroleptic does he want you to take? I was the same as you - not responding and then he added Latuda which seems to work for me at the moment. I take 74 mg daily. I don’t like antipsychotics, but they forced them on me on the NHS and now I can’t sleep without them!


Regarding living at home - try to cut yourself some slack! I live at home with my parents too and there was no way I could live independently when I was ill. I don't attach guilt to that even though my friends tell me that's why I'm ill! 🙈


I read a lot of self-help books when I was ill which helped to kill the time and also helped comfort me a little bit! I had no energy for anything else. I rested and slept and didn’t attach any guilt to myself for feeling like that.


Hope you start to feel better very soon!


Tom









Hi Tom,


Reading about yours and other people's mental health always helps with my own. My brain shut down completely almost 4 years ago. I've had previous episodes because that’s just how it is with this illness. I've learnt a different way of thinking but still creeps up on me.

I'd be grateful if you found the time to reply. It’s hard to surround yourself with others whom understand and manage their illness.


I only just found your page and found lots of it interesting including this article yet I don't agree with cannabis being the cause. I’m no doctor or specialist.


Yes, it can have these effects but only on the few plus it was possible that many other factors and other drugs adhered to his schizophrenia. Cannabis helps more than it hinders. Especially if the right type for what its needed for.


People do need to understand that it’s not dangerous. I’m wondering if you would find research into cannabis benefits interesting to read? I don't know you but going by how passionate you are about mental health and reading, I'd find it interesting to see if you had the same mind set afterward?


Good luck with everything you do continue to shine bright 🌞 x



Hi Kate,


That's great that you are persisting and it sounds like you are winning the battle. I know how hard it is.


Trying to manage a mental health condition and hanging on to your dreams is important as well.


Cannabis is dangerous because there are so many strains of it and it can be lethal for the wrong person there's just not enough scientific research done to make it safe but I appreciate that it may have medicinal properties.


Good luck with everything,


Best wishes, Tom



Hi Tom,


Thanks for your reply. It's been useful reading your posts to remind myself exactly how hard it’s been and yet how far I've come. Glad you are finding light also and speaking out to help others is magnificent.


Remember to look for yourself first. A lesson I find hard at times. Love n light










Hi Tom,


I'm interested in what you've written about your treatment. Having suffered with mental illness for most of my life and am struggling atm despite being on max dose of two drugs. I would really like to know what dr you went to. The ones I've seen don’t know what to do with me and nhs mental health services have said there’s nothing more they can offer me.

Appreciate your thoughts.


Thanks



Hi Ruth,


So sorry to hear you’re having a tough time. It sounds so similar to me. I was labelled treatment resistant then they gave me ketamine which sent me manic and was a total disaster so don’t whatever you do do that!


The doctor I finally went to is Harley Street so ridiculously expensive, but he got me better when everything else had failed and I’d totally run out of options on the NHS. He’s called Dr Zamar from The London Psychiatry Centre.


He specialises in bipolar but would probably be able to help you. My aim now is to get his treatment onto the NHS. Part of the treatment is something called rTMS which is repetitive transcranial magnetic stimulation, and the other side of the treatment is high dose Levothyroxine for thyroid conversion which is a problem in depressives and bipolar.


He’s the most lovely man as well as an exceptional doctor. You may be able to get rTMS on the NHs but the waitlists are horrendous and there’s hardly any – I hope to change this!


It’s pretty painless and not risky or horrible like ECT which can cause mania and memory loss.


Let me know if I can help you further but take a look at their website.


Best wishes, Tom









Hi Tom,


I read part of your blog and some of it sounds so familiar... I have been trying for several years now to get help on the NHS and thorough support for my son.


He has been struggling since he was 14/15, probably younger but I didn't know. He has been suicidal (not now), and he has self-harmed in the past (again, not recently).


He is now not as bad as he has been, but he is still not "functional". He is on medication for depression although he has been told twice that he doesn't really have clinical depression.


The medication is helping somewhat... he is at least able to sleep now, but he is still not right. He still fails to get up, and spends days at a time in bed, or shut in the dark in his room. I want to help him, but I have no idea how.


He has tried counselling but says it doesn't help as he has no idea how he is feeling. He says he feels nothing. I am intrigued to know what help you managed to get from the private doctor and whether that might help my son?


Please help!


Caroline



Hi Caroline,


I’m so sad to hear this - I’ve spent years at a time in bed with depression.


Mine was very obviously depression because I was so disinterested and couldn’t do anything to help myself.


Tell your son not to attach ANY guilt or shame to this because it’s not his fault.


Unfortunately, the traditional medications didn’t help me at all. I’ve done 20 years on the nhs with no results whatsoever - antidepressants made me worse and nothing lifted my depression.


I have a diagnosis of bipolar disorder so I have now been helped by an amazing bipolar expert but he’s VERY expensive. He uses high dose Levothyroxine in combination with rTMS.


There’s a post I wrote about this on the blog. It’s repetitive transcranial magnetic stimulation. This has not only saved my life but given me my life back! Thank god!! rTMS is available on the NHS but there’s hardly any of them and the wait lists are horrendous.


NHS mental health care is pretty hopeless quite frankly so if you can afford to I would say to go private! I spend 20 years going round in circles.


Dr Zamar is the guy that helped me. 72 Harley Street. Very expensive obviously but I will be campaigning to get this treatment on the nhs ASAP!!!


If your son would like to speak to me I’d be so happy to. Depression/ bipolar / mental illness is terrible to go through. Let him go to bed and support him and tell him he’s loved over and over because unfortunately depression is cruel and distorts the mind.


Hope that helps!


Best wishes,


Tom









Hello Tom,


I just read your article and I'm intrigued to say the least. I had undergone TMS treatments in the past but they didn't work for me. I'm excited to see that by adding the HDL it could help. How many TMS treatments did you undergo before you began to see positive lasting results?


Best regards,

Joe



Hi Joe,


I can't tell you what a revelation the combined treatment of HDL and rTMS has been for me.


I did have a lot of rTMS and I had a primer too later on because I didn't think it was working either. I stuck with it and had about five months of treatment most days then I had 'maintenance' (once a month) for a few months. I have not now needed rTMS at all for the last year and I've stayed in remission.


I stopped rTMS when the coronavirus restrictions came in otherwise I would probably have continued but as it is I don't think I need it anymore. It's really difficult to know if the rTMS helped or whether it was the high dose levothyroxine. (probably both!)


Dr Zamar told me that he had had best results with a combination of both so I just went with everything he suggested because I was super ill and had tried EVERYTHING else!


Hope that helps a bit. There's a lot of info on the blog but do shout if you want to know anything else. I had tried everything before this treatment and nothing had worked. I think millions of people could benefit from it. Let me know if you need any other info.


Best wishes, Tom 😀









Dear Tom,


Thank you for your email Tom I too have tried many different meds without success for many years. I've been using natural remedies for about a year now but I'm still not consistently "good". I was feeling helpless this morning after a bad day yesterday. I asked the good Lord why he hasn't helped me, I was feeling as though I've been forsaken.


I decided to do a little searching this morning to see if I could find anything new on the treatment of bipolar and I found your webpage. Perhaps, my prayer was answered. I found some scientific literature on the subject and I'll present it to my psych which I had pretty much given up on. I'll let you know how it goes, thank you for putting your story out there... Congratulations on your success, stay well...


Chris



Hi Chris,


Please hold on because I know this treatment can help you. I don't think there are any other psychiatrists doing this treatment apart from Dr Zamar. If you google The London Psychiatry Centre 72 Harley Street then his details will come up. Maybe have an initial appointment to see what he says?


You will get a proper diagnosis at the very least. Let me know how you're getting on. I feel for you and know the pain only too well. There is always hope even when it feels as though God wants the worst for you so please hold on, even though I know how hard that is.


Best wishes,


Tom









Hello - I follow your page and blog with interest after I came across your article in H&H online.


Firstly, I wanted to say thank you for talking so openly about mental illness. (And the very good distinction you make between mental health and mental illness - so important and, in my experience too, often overlooked.)


I wanted to share with you a book I am currently reading as part of my own interest in the role of nutrition in mental illness - in case it might be of interest to you or any of your followers. I am particularly interested in this subject and think it is a really worthwhile aspect to look into.


It was a multitude of factors that lead me to becoming unwell and I believe it will be a multitude of factors that will lead me to a hopeful form of recovery.


I am so lucky as I have had unwavering family support, access to ongoing psychotherapy and medication - and I also know my illness is not a fraction of what others have to suffer.

I am always so interested in new research and treatments and try to share them where possible with anyone who might be interested. Best wishes and thank you for your blogs.


Helen



Hi Helen, Thanks so much for the suggestion, I’ll add it to my reading list! You are right that the key to getting better involves many things and I’m sure what we ingest plays a big role too. I actually found a nice post about diet and how it involves everything from food to what you read and who you talk to! I’ll try to forward it! Thanks so much for your kind words and support - it means so much and inspires me to keep going! Best of luck in your journey to full mental wellness!


Tom






Dear Tom,


Just to say - so enjoyed your recent blog. Really made me smile to see that you were able to enjoy riding again! My journey has certainly not been as difficult and lengthy as your’s but it really resonates - finding joy again in things that I once wondered may have no longer been a part of me.


So true that there is no point doing things when you are not well but wait until you are better. If someone had a severe physical illness no one would expect them to just get out and partake in everything regardless. I find understanding that also helps to take the pressure off and not also add to the load by feeling like you ‘should just do it anyway’ - so thank you for putting it into words and helping me to find peace in that further.



Hi Helen,


What a lovely message! Thank you for the support! Yes, it’s true that you would never expect a person with a physical illness to ‘get on with it’ etc, and there’s no difference with mental illness either! I love the h o p e reference. I’ll definitely remember that one! Well, well done for surviving and getting better- I know how unbelievably hard that is! Please keep spreading the word about the blog so that I can help more people and fundraise! Thank you!








Tom


Hello, I’ve just spent a while reading different parts of your blog and I felt compelled to send you a message. I hope you don’t mind. First of all, thank you for writing about everything. Secondly, I’m so sorry you’ve been through what you have, it’s very brave to be writing about it all and I truly believe that this blog will help people. I’ve been there myself, it’s so dark and still, many people just don’t understand.


Keep going and never give up x



Hi Theresa, Thank you so much!

I’m so thrilled that people like yourself are noticing the importance of what I’m doing! I’ll be fundraising and campaigning in the future but it will only happen if I have a following, same goes for the book so please spread the word! Thanks for the support and best wishes for the future!


Tom




I have had so many other messages and I will continue to devote my time to replying to each and every one of them!


I get such satisfaction and pleasure from helping other people and am determined to keep going until I have done everything in my power to make things better for future generations!


I just need to work out how to live alongside all of this!


Thanks for reading,


Speak to you soon,

TR

www.dyingtostayalive.com




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