• Tom Robinson

50km of inspiration: a big thank you to James Crystal & 'team Eeverse' for a great fundraising walk!

It has been such a blessing to finally be enjoying some decent weather and warm sunshine again over the weekend, after what has been rather a disappointing summer here in the U.K!


It seems rather typical that, in a year when most of us have not felt it right to leave the country, the weather should be quite so dismal, but it’s been great to finally have some sunshine again - long may it last!


But although I am now finally well enough to be able to really appreciate and enjoy this balmy interlude, I never stop thinking about those who can’t, because even though most of us have been outside reaping the benefits of the early autumn sun, millions of others will have been trapped under duvets with the curtains closed, like I used to be; suffering with relentless and crippling depression, completely unable to engage with the day at all, let alone appreciate and enjoy it any of it.


Remembering the horror of the illness, and knowing that so many continue to suffer, makes me even more determined to keep writing and documenting all of this important stuff to help get the thyroid treatment (that basically saved my life in the end), rolled-out onto the NHS, so that everyone else can begin to see the sun again too.


So the fact that I’m struggling to get noticed does make me rather anxious because I know how important all of this is, yet the right people haven’t quite caught on yet (there is a slow trickle of professional interest now) – please hurry confessional memoir/ agent / PR / expert editor, who is allegedly coming my way – we have some serious work to do!


In the meantime, all I can do is to keep gratuitously thrashing out these blog posts and continue to document everything I know (I really think with the help of a clever, imaginative, dynamic, and experienced editor that this blog could be another book too), so anyway, for now, I will just keep tapping away….!









Winning the quetiapine withdrawal battle one step at a time!


I will be writing a detailed post about my battle to get off the antipsychotic ‘quetiapine’ (Seroquel) in a future post, but I want to briefly mention the most recent developments for any of those who are in a similar position.


After seven months of tapering at a ridiculously slow protocol of about 2mg a month (I was trying to get down from a minimal dose of 25mg and followed the advice of a 10% cut of each new dose every 2 to 4 weeks), I’ve realised that this withdrawal advice is still way too fast!


The bad news for those who are trying to get off this drug (either due to intolerable side effects and/or complete inefficacy as in my case), is that this is a RIDICULOUSLY powerful drug that is not at all easy to withdraw from.


I do appreciate that each individual will react differently to these psychotropic medications but everyone I’ve spoken to that either, has been, or is currently, stuck on this drug has said the same thing – it’s just so bloody hard to get off it!!

It is a difficult one because I do appreciate that when people are having a nightmare time in a mixed, manic or psychotic episode, they desperately need to sleep, but the long-term effects of these drugs are extremely worrying; it would be nice to think that you could get off them again once the episode of severe illness is over – but unfortunately, it just isn’t anywhere near that straightforward!


Anyway, I will write in detail about all of this soon, but in the meantime my most recent troubles (and bear in mind that I came down from 2mg over 2 weeks ago now) have been feeling ‘vacant’ and suffering with ongoing intermittent headaches.


On Saturday, I woke up feeling really spaced out, and even though my sleep has been almost completely salvaged now (hallelujah for that), I’m still suffering from the pernicious aftereffects of this (yes, I’m going there now) bloody awful drug!


So, I was very appreciative for Mum’s wisdom and foresight, once again, when she suggested that I only do a leg of the 50km charity walk that I’d agreed to do on Saturday instead of the whole thing! Luckily, this plan worked out well and (headache aside) it all panned out superbly.


It was a such a special experience; a beautiful walk in the Worcestershire countryside, and an amazing opportunity to meet so many inspirational and like-minded people - all so passionate about supporting other people and raising awareness and education around the difficult issue of mental health and illness.









50 kilometres of inspiration


Having decided that 50km with a quetiapine hangover was probably going to be too much, Mum and I decided to drive up separately, leave one car at Alvechurch station (about 35km into the walk) and meet the team further down the route at Stoke Wharf.


I was amazed that this plan worked out quite so well and we literally pulled up on the canal at exactly the same time as the walkers were coming off the path and onto the bridge!


The walk was organised by my amazing and inspirational new friend James Crystal from the foundation Eeverse’ who reached out to me many months ago now through one of my posts on LinkedIn.


We seem to have had a similar sort of ‘awakening’ since we have both managed to turn our lives around in the most spectacular of ways.


I have a deep respect for anyone who manages to do this (because it’s actually rare these days, and also extremely special to finally be able to say that you’ve ‘seen the light’), and this made meeting James and the gang so especially momentous and extra special.


A huge shout out to Sylvie, Evan, Chris x2, Emma, Dan, and of course James for completing the full 50km in amazingly good time on Saturday and to the support team of AJ and Sarah for supplying us with much needed fuel and water along the way!









Good for the soul!


It was fantastic to walk alongside so many inspirational and amazing people, hearing their various stories, and sharing some of my own, as we made our way along the first (for me anyway, for them 30 something!) 12km of stunningly beautiful canal path between Stoke Wharf and Alvechurch Station.


Chatting away made the distance go so much quicker and being surrounded by the beauty and history of the canal path (first constructed in 1792) only added to the ‘wellbeing tonic’ that only a combination of camaraderie and nature can create.


While walking, I was reminded of the initial steps in my recovery which were taken in such a slow and progressive manner; this is what people are going to have to realise; recovery is about going back to the basics and simplifying things as much as possible.


It is only when you get better that you realise the profound change (for some anyway) and that gives you the opportunity to re-evaluate your life. Then, after much soul-searching and regaining of confidence (and only then), can you add in all of the other elements of your life.


This is something that James understands so implicitly, so it was particularly special to be able to hear some more of his story because he also appreciates the importance of this ‘profound change’ and we exchanged experiences of - prison life for him, and psychiatric ward life for me!

Both of us have lived through and witnessed such horrific trauma but somehow we’ve managed to turn a horrendous experience into a positive one, and it’s all to do with wanting to help other people.


It’s honestly so refreshing to have met a kindred spirit, someone who truly understands where I’m coming from - FINALLY! – I do think we’re a rare breed, but I am keen to find out if there are any more out there!









Finding his faith


Another important aspect in all of this is that James is very open about the fact that he has found his faith.


This is something that I’m not really ready to discuss yet but when I mentioned that to James his response was:


“Well, that’s why I set up my foundation; to encourage people to be open and honest, and feel that they can express their beliefs, thoughts and anxieties without the worry of being ostracised.”

And he’s got a serious point there….


So, there is a huge amount of other stuff that James and I have to talk about in the future but for now we will keep in touch and continue to try to help as many people through our different platforms as we possibly can.


Thank you so much James for all that you are, and all that you do – it is all so incredibly important!









Understanding and empathy is key to saving lives


Meeting James and the rest of the gang was so uplifting, and it highlighted once again, the importance of that understanding and empathic element that comes from ‘peer support’.


This is especially important when it comes to mental illness because as a sufferer you don’t have to explain anything to someone who’s been there – they know the hell and they know exactly what to say, (and almost more importantly) what not to say.


Unfortunately, for those that haven’t ever had an experience of mental illness, it is never quite the same, (and not totally their fault) because they lack the experience and education to say the right things – another reason for the multitude of posts that I write on here!


This has all been highlighted through several of my friends in recent weeks, as so many of them seem to be having a rough time.


The common theme amongst all of them is that they feel misunderstood and unsupported by those around them, and the truth is that unless you’ve been in the depths of hell (where death would be such a welcome option), you have absolutely no idea what that person is going through.


There are a few reasons why I’ve survived long enough to write this sentence and one of them was that through my twenty-year horror story, I met many other people who were going through similar battles.


Having them to talk to (when I was well enough to reach out to them that is), was a real comfort, and that’s why I now devote my life to writing gratuitous blog posts and emailing/ texting / speaking to the many people who reach out to me for support and guidance.


Lived experience is paramount to saving lives – James gets this, and I get this… now we need everyone else to catch on too!








NLP starting today


I have been really busy over the last week with the pre-study for my NLP course (neuro-linguistic programming) which has taken quite some time to get my head around!


It would seem (as its title suggests) that this is going to be a rather 'wordy' subject to get to grips with, and I was planning to write an introductory post to NLP before I started the course, but I seem to have run out of time now!


I can already tell that I am going to like some parts of it and not others, which follows a similar pattern to when studying CBT, psychology and self-help – I never seem to find one source that wholly captures everything I want it to (maybe that’s impossible, I'm not sure yet)…


But this is why, (in the distant future of course), I’d like to design my own therapy out of all of this accumulated knowledge; maybe it will be something like fMHT (Full Mental Health, Holistic & Healing Therapy) – a culmination of everything I’ve learnt over the last twenty years and MORE - so..... watch this space!


I will be writing a post about NLP in my next offering which won’t be until Wednesday morning now, as I think that after five hours of NLP lectures this afternoon, I will be ready for a much needed rest!


Thanks for reading,


Speak to you soon,

TR

www.dyingtostayalive.com



Photo: The finishers! To donate to this worthy cause please click here.


137 views0 comments