The "let's talk" thread

I am off to London this morning for a meeting at the Royal College of Physicians where Prof Griffthis and Prof Warren from Salford Royal's Dermatology team are doing a presentation on PSORT. This is an initiative called stratified medicine which in the future will be able to pinpoint the exact biologic a person with Psoriasis needs. It is a really promising development in the world of psoriasis treatments and will hopefully eradicate the kind of problems you have had. By using your specific DNA and blood type it is hoped that the current treatment regimen's will become obsolete and everyone will get the exact treatment they need at the first time of asking thanks to a simple blood test.

I can both sympathise and empathise with you as I have been in Salford Royal 29 times over the years and have spent 3 years of my life on the ward there. I have had everything that you speak off and more and been in your situation many times over the years. I can honestly say their is hope for you. I am currently on my 7th different biologic drug. I was one of the first in the UK to try them and was involved in the initial trials for this new type of treatment because like you everything else had failed. I am currently on a biologic called CIMZIA which is used for the treatment of Psoriatic Arthritis and whilst I am not 100% clear it is the best I have been for years and years. Some here will attest I have been in a right mess over the years with the problems I have had.

If you ever feel you need Psychological help their is an initiative called the Psowell clinic run by an eminent psychologist called Prof Bundy who is one amazing woman and who i literally owe my life because she saved me from the damaging psychological impacts of living with a long term condition and gave me the focus to do what i do now. I am now a patient ambassador for the Psoriasis Shout Out and do a lot of work with the Psoriasis Association. I spoke at the annual conference last year about the problems i have faced over the years. Their is also a podcast on which i occasionally co-host called Psoriasis Geek which is well worth a listen as it is people like you and me talking through the problems and giving advice on treatments and generally talking about the condition in general. Please give it a listen as it will help show you are not alone.

https://www.psoriasisshoutout.co.uk/ is a link to the shout out website, their is some good stuff on there worth checking out. Also try the Psoriasis Association facebook page as there are some very knowledgeable people on it too and it has a real sense of community.

Its good to hear you will be starting Biologics, they are now becoming a more mainstream treatment and by reading your post you will qualify as they are currently expensive although the earlier treatments have now come off patent and bio-similars are available which increases the chances of them being prescribed. Everything you have posted i can identify with and being ethro=dermic can be dangerous and the grease is an effective treatment in bringing down the increase in body tempreture that usually arises with a bout of ethrodema. People rarely realise how complex a condition like psoriasis can be, there are several different forms and each have their own specific issues associated with them. There is also a link between increased suicidal tendencies and psoriasis because of the isolation it can cause. It is a condition that is clouded with myth and i have personally been asked if i was a leper FFS.

Keep your chin mate, keep smiling if you can and be sure in the knowledge that at Salford Royal we have the very best dermatology team in the world. The two Proffs are world renowned and are currently researching an initiative called the Global Psoriasis Atlas which you can check out on twitter and instagram and at https://globalpsoriasisatlas.org/


There is also a real lack of practical advice out there, from simple things like how to apply creams properly and if you need any help please give me a shout.

Finally dont despair pal, the future treatments are becoming more effective and the latest are brilliant but due to cost they are somewhat rationed and you have to follow established NICE guidelines to qualify for them, but from your story i expect you will qualify easily. You will hear no doubt some scare stories about Biologics especially in regard to increase in cancer risk. A Docter i know has been researching these links and as of yet has found no evidence that backs up those fears. The Doctor in question will be a Prof soon as he is a genius and very well respected in the Psoriasis world for his research. Also if possible please try and get involved in any research opportunity that comes available, most are simple questionaires and they all help. Quite soon i am involved in the Psoriatic Arthritis Priority Setting Partnership which will indicate which areas need researchig the most and we need people with the condition to help set the parameters.

All the best mate, if you need anything give me a shout.

Cheers
PM sent.
 
Interesting that gym thing. I always thought it would be cold, body obsessed individuals. But actually it's completely the opposite for me. I started running 3 years ago (and still consider that my 'mothership' of exercising. However, I developed a labral tear and very likely due to the slightly squared hip joints (I had a dye injected into my hip joints before a MRI scan 2 years ago). In the end they suggested surgery was possible but they don't know enough about it (and could in fact hasten arthritis in the future). So with the help of a physio (and surgeon) I was given some exercises to do...but these were those A4 printouts of an old lady lifting her leg up and down whilst watching corrie. So I sucked up my preconceptions about gyms and joined one....one of my best decsions I've ever made. At 46 I now have the metabolosism of a 30 year old (I had a body composition test that...came up as very athetlic).
I also joined a Yoga and Pilates class as I've had painful lower back issues/sciatica for years (and the posture was starting to give in to gravity) and feel as sprigtly as a kid now (but my god...some of the sights you see in a yoga class ;) ). Highly recommend these classes (including the meditation).
Fitness aside, I've got to know some wonderful people there...the energy is contagious (all walks of life)...did I mention yoga pants?
Thankfully (although not at the time) my dad made me do sports every day of the week...that was his big legacy to me as he died when I was young and can't remember a great deal about him. I've had a bit of a wobble these past few weeks (change in season isn't helping) although no one would ever know on the face of it (despite some nights of laying their eyes wide open with grim thoughts). I've ramped up the gym sessions (I take my autistic daughter and it's helping her) which helps ride the storm for me personally.

Great thread this - getting it out of your system is a very good start.
 
About three and a half years ago I met a girl online. Three kids with two different dads, and clearly slightly damaged, but alarm bells didn’t start to ring and the relationship developed into something pretty special. She’d had a very different upbringing to me: abusive, Lanarkshire council estate, loveless, but she was a remarkable woman who had overcome all that and become a professional ballerina. She was also very bright, attractive, great in the sack and she absolutely adored me, and I loved her back. My folks loved her too. She was ace.

Saw her for 18 months, got on well with her eldest two (who she had joint custody of) and grew very close to her youngest, a girl (who she had sole custody of).

Early January 2018 went to Malta with her for a few days. Just me and her, which we’d struggled to do as much as we’d liked because her youngest, the one she had sole custody of, was 18 months old when I met her - and the dad was in Scotland. It simply wasn’t straightforward to go for meals out, never mind weekends away, but we dealt with it.

Got back from Malta on the Saturday, stayed at mine that night and dropped her at hers the following morning. Made a loose arrangement to maybe pop round that afternoon with my son who I was taking back to university that day.

Called her in the afternoon, no reply. Didn’t think much of it. Called her after I’d dropped him off - the same. Thought about going round that evening but left it. Called again in the morning, still no reply - started to get a bit concerned and decided to go round to hers as I was off work that day.

Got to the house and her car was in the drive, which was the first time I realised something was most likely wrong, as she was supposed to be at work. Got to the house, opened the door to find utter chaos. Her three year old had been running amok, who upon seeing me told me that mummy was asleep upstairs on the floor.

Went straight upstairs and found her dead, face down on the bedroom carpet, right next to the bed. A moment that will never leave me. Called 999, who told me to try and give her CPR, which I did, but I knew it was utterly hopeless and thankfully the paramedics turned up incredibly quickly and pronounced her dead immediately. Giving CPR to a corpse with her three year old daughter hysterically crying while I did so was pretty brutal. Post-mortem said it was an acute asthma attack, but I don’t accept that. I think she’s had an arrhythmia and dropped dead on the spot; not that it really matter what the cause was. It doesn’t change anything.

In many ways my life has been a positive experience since that dreadful moment and its aftermath; certainly I’m very content and thoroughly enjoy my work and my life It would be wrong to suggest that event and the surrounding circumstances have overwhelmed my life in the last two years, because they haven’t. Finding someone so full of life, looking so lifeless makes one realise the fragility of existence and the need to make the most of every day, which I believe I’ve done. However, I think about finding her like that very often, as I do her. As I’ve said, she was fucking ace and she was right for me. I talk about her every day and miss her very much. We made each other happy and for her, happiness was something that had been missing for most of her life.

Still in touch with the kids and hope to remain so, especially the three year old (who’s now five and the spitting image of her mum). I doubt she’ll now recall that dreadful morning, but equally she probably won’t remember her mum and it’s important that I can answer as many questions she will doubtless have when she’s older. She seems largely unaffected by it now, but that will change as she get older. Hopefully I can ameliorate that a little.

I try and take comfort from the fact that she was happy at the end, and I don’t believe she suffered, but it does little to suppress the feeling that me, her and her kids have been cheated. The reality is, however, the same could happen to any of us, at any time; between heartbeats.

And one piece of advice; make sure you tell someone that you love them as often as you can; you never know if it’s the last time you'll get the chance.

Blimey mate...heartbreaking story but an amazing attitude to it. Not sure I could've coped so well, like a few stories on here.
 
I started believing these last couple years that my family would be better off without me. It got to the very dark stage where I would walk the canal for hours, trapped inside my head with my worst demons, tears down my face, hating myself for feeling so selfish.

I lost our beautiful house three years ago, forced to sell up because my freelance business was not bringing in the type of money it used to. We bought a smaller house around the corner so the kids weren't forced to quit their schools, and with the equity the sale released, we were at least able to put a decent chunk of money in the bank.

The sense of guilt and shame was enormous.

Having money in the bank didn't change a thing.

I became more and more depressed, sleeping two hours a night, lying in bed with the anxiety of what groundhog day would inevitably bring.

Essentially, I had a complete physical and mental breakdown, 25 years of working for myself, the daily grind of supporting a family and starting every day from absolute scratch, a media industry changing quicker that I could possibly keep pace with.

My self-esteem was at zero, supplemented by overeating to try and make myself feel better for a while at least, putting on nearly four stone and hating what was staring back at myself in the mirror, a complete and utter hatred of the pathetic man I had become.

I don't really have many friends, I work in isolation from home and would go days without speaking to anyone or actual human contact, outside of my wife coming home and asking how my day was, waiting to unload on her.

My young kids would walk around on eggshells and my wife just kept on saying something needed to change. After one particular moaning she just burst into tears and said we couldn't go on like this, she had reached her limit.

I had spent so long talking about all the things I couldn't change, how I'm not qualified at the age of 45 to start all again, even though I despise what journalism has become, still a slave to earning a living from it.

I've been with my beautiful wife since she was 15 and yet 26 years later, she has always had my back, I just didn't appreciate what I do have going for me.

My doctor had previously tried to prescribe me beta-blockers to control my general anxiety disorder, supposedly because my cortisol levels were always through the roof because my body was always in fight or flight mode, owing to my high state of readiness, even when danger was far away.

I vowed to my wife I would "try" to get better and the next day I booked an appointment with the nurse at the surgery, she always seemed to have a friendly face.

I told her everything and said I was just "sick of fighting myself every day" and she gave me a hug and could see how much I was hurting. She referred me to Trafford Self Help Therapies for CBT therapy and, after a few weeks, got myself a counsellor.

This amazing woman stripped me down, making it so easy for me to tell her my deepest thoughts and fears. How I had conditioned my mind to have automatic negative thoughts, thinking I was protecting myself from harm by isolating myself.

How I can't say no to anyone, always going out of my way for everyone, needing to be liked, even if it compromised myself. Having a father, more through his generational thoughtlessness and complete lack of emotional intelligence, who had fat shamed me from an early age, even though I wasn't that big, just not perfect.

Setting myself up for failure, time and again, an all or or nothing attitude, nothing in between.

My therapist helped me to identify my qualities, a completely impartial observer. How she "admired" my drive every day to get up and start work at 5.30am every day from the age of 16, but there comes a point when something will give.

I was given a different way of looking at things, from an intellectual level, working backwards and using my previous experiences of bad situations to inform me that things invariably worked out okay, so there was no need to sweat the the things which happen in the interim?

I finished 12 months of therapy recently and can maybe see I wasn't ready previously to change at other similar periods of my life.

This year was about working on what was going on inside my head and improving my physical state. I went back to the gym, every day, I've lost nearly three stone in two months, no meat, no alcohol, no sugars. I'm almost back to my prime weight of 12 stone and I am sleeping like a baby.

I am still not sure what my future job prospects are like, I feel the world has moved on a lot and don't quite know where my place will be in it.

All I know is that I am enjoying meeting new people, playing squash, bench pressing 100kg, feeling like my life isn't just passing me by. Next year I will put myself out there to try and work out the next career step.

More importantly, my wife has got back the man she has always loved, she just loves me a little bit more for trying to "fix" myself.

This was very hard for me to share, but if it can give a glimmer of hope to anyone who finds themselves in a similar situation, then it will have been worth it.

I've stopped caring about the things I cannot change.

Peace and love, Blues.x
 
Does anyone ever feel that they're just heading for an inevitable mental breakdown one day? My life is good really. I'm healthy. I love the people around me. I don't mind my job at all. But I find it harder every single day to deal with all the bullshit that surrounds us. I'm 34 and it feels like with every passing year I get more cynical and more world weary. Really nagging feeling that it'll overwhelm me one day, despite things being good really. It's weird. I appreciate that's vague...but I just feel tired, ya know?

Edit - Tolmie's post above me. Yeah, I feel like im heading for that one day. Sorry to hear that mate.
 
Does anyone ever feel that they're just heading for an inevitable mental breakdown one day? My life is good really. I'm healthy. I love the people around me. I don't mind my job at all. But I find it harder every single day to deal with all the bullshit that surrounds us. I'm 34 and it feels like with every passing year I get more cynical and more world weary. Really nagging feeling that it'll overwhelm me one day, despite things being good really. It's weird. I appreciate that's vague...but I just feel tired, ya know?

Yep, every so often I get this. Only recently I began to feel bad because my reality is that these are the good times. I'm happy at home, my loved ones are all in a state of good health. I spend so long worrying about what ifs.

I have very little tolerance for people outside of my immediate social circle. I'm a loner at work because I feel that the relationships formed there are forced and fake.
 
Yep, every so often I get this. Only recently I began to feel bad because my reality is that these are the good times. I'm happy at home, my loved ones are all in a state of good health. I spend so long worrying about what ifs.

I have very little tolerance for people outside of my immediate social circle. I'm a loner at work because I feel that the relationships formed there are forced and fake.

I get that too. I'm a huge worrier. I worry about everything and anything. I've even got to the point where i'm flight statuses of planes my parents are on on their holidays to make sure it hasn't crashed, despite it being a two hour flight. Absolute nonsense, but I worry more about stupid shite like that everyday. I drive myself mad with it.

With regards to the last bit, i'd say all friendships are forced and fake at first. You pretty much always meet someone by circumstance, and no one's really thinking 'I'm going to meet my new future best friend at work today', but you never know - you might. I used to be really bad at this side of things, but one day I decided to stop being so cynical and actually take a bit of a leap. My girlfriend has always encouraged me to invite work friends I get on with out, to actually get to know them properly, and she has a point. I think you just have to willingly test that friendship away from those work boundaries. It's really, really hard to do something non-work related with a work colleague. Takes a huge step, but the potential rewards are amazing though. I have a really small social circle. Very, very small. I know a lot of people, but there's only a few i'd consider genuinely good mates. One of my very best friends now i've only known for 3 years. He was a work colleague. He hired me in fact, kinda.

We had a sociable job so we did a lot together, but we were both made redundant after about 8 months of working together. He could have easily just disappeared away from my life. Probably would have too tbh. However we got on so well that I thought 'i'm gonna actually grow a pair and invite him round for a beer/few games of FIFA' etc. Best decision I ever made. I was at his wedding a few months again in Spain, and we're exceptionally close mates now. And he was just a lad who basically hired me for a role three years ago. If I hadn't sent that text and made the leap I'd never have known that. Obviously it won't always turn out that way, but I'm glad I did that.

Basically, work relationships are forced and fake, but it doesn't mean those people are too. It's sometimes quite nice to test them outside of the workplace. Worst that happens is you have an awkward one hour pint. Best happens? You've got a friend for life.
 
Does anyone ever feel that they're just heading for an inevitable mental breakdown one day? My life is good really. I'm healthy. I love the people around me. I don't mind my job at all. But I find it harder every single day to deal with all the bullshit that surrounds us. I'm 34 and it feels like with every passing year I get more cynical and more world weary. Really nagging feeling that it'll overwhelm me one day, despite things being good really. It's weird. I appreciate that's vague...but I just feel tired, ya know?

Edit - Tolmie's post above me. Yeah, I feel like im heading for that one day. Sorry to hear that mate.

I can certainly identify with that, Ste. The mind and body is incredibly resilient at 'coping'. I'm probably one of the most cynical people around, I also think working in the media also exposes you to more of the bullshit, so do keep a close eye on it, please.

It can sort of creep up on you. I am trying to treat all imposters the same, these days. Leave any ego at the door. More that I am just being tossed around the washing machine of life like everybody else.

I've come to realise a little bit of indifference stands me well.
 
Does anyone ever feel that they're just heading for an inevitable mental breakdown one day? My life is good really. I'm healthy. I love the people around me. I don't mind my job at all. But I find it harder every single day to deal with all the bullshit that surrounds us. I'm 34 and it feels like with every passing year I get more cynical and more world weary. Really nagging feeling that it'll overwhelm me one day, despite things being good really. It's weird. I appreciate that's vague...but I just feel tired, ya know?

Edit - Tolmie's post above me. Yeah, I feel like im heading for that one day. Sorry to hear that mate.

I know it's a cliche but prevention really is better than cure.

If you feel like you are headed for something, there's a decent chance you are, but you've also got the power to change course. Start looking after your mental health now and at the very least you might be able to deal better with a crisis point if it happens, if not avoid it completely.

Mindfulness is incredibly popular right now and because of that some people write it off as a fad, but I will say it has helped me a lot and it sounds like it would be good for what you're describing - letting go of small nagging things that bother you and not letting them build up.

And because it's the popular thing it's incredibly accessible, theres loads of great apps, books and online resources.
 
I get that too. I'm a huge worrier. I worry about everything and anything. I've even got to the point where i'm flight statuses of planes my parents are on on their holidays to make sure it hasn't crashed, despite it being a two hour flight. Absolute nonsense, but I worry more about stupid shite like that everyday. I drive myself mad with it.

With regards to the last bit, i'd say all friendships are forced and fake at first. You pretty much always meet someone by circumstance, and no one's really thinking 'I'm going to meet my new future best friend at work today', but you never know - you might. I used to be really bad at this side of things, but one day I decided to stop being so cynical and actually take a bit of a leap. My girlfriend has always encouraged me to invite work friends I get on with out, to actually get to know them properly, and she has a point. I think you just have to willingly test that friendship away from those work boundaries. It's really, really hard to do something non-work related with a work colleague. Takes a huge step, but the potential rewards are amazing though. I have a really small social circle. Very, very small. I know a lot of people, but there's only a few i'd consider genuinely good mates. One of my very best friends now i've only known for 3 years. He was a work colleague. He hired me in fact, kinda.

We had a sociable job so we did a lot together, but we were both made redundant after about 8 months of working together. He could have easily just disappeared away from my life. Probably would have too tbh. However we got on so well that I thought 'i'm gonna actually grow a pair and invite him round for a beer/few games of FIFA' etc. Best decision I ever made. I was at his wedding a few months again in Spain, and we're exceptionally close mates now. And he was just a lad who basically hired me for a role three years ago. If I hadn't sent that text and made the leap I'd never have known that. Obviously it won't always turn out that way, but I'm glad I did that.

Basically, work relationships are forced and fake, but it doesn't mean those people are too. It's sometimes quite nice to test them outside of the workplace. Worst that happens is you have an awkward one hour pint. Best happens? You've got a friend for life.


Again mate, the whole worrying thing. I am from a long family of them. I am sure it is genetic!

My therapist would call this catastrophising, when I would try and predict stuff. From leaving five hours before in a car journey so the motorway was clearer and I wouldn't crash with the kids in the back.

You can't change worrying if that is your nature, just how long you actually stew on it.
 

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