My thoughts are spiralling out of control. I am finding it hard to concentrate and do work. I am talking to myself a lot.

Posted Mon 15 Apr 2019 8.45pm by AnonymousRemains

My thoughts are spiralling out of control. I am finding it hard to concentrate and do work. I am talking to myself a lot. It is time to get everything in my head out now.

I have suffered from depression for a long time. I found out I had psoriasis when I was 18. I am now 35. When I was told I would always have it and there is no cure. I decided then, that if the disease covered my body I would not want to live with it. But at the same time, you can’t kill yourself because it will upset people around you. I hate the thought of making others suffer. So I guess I just have to suffer my entire life, something doesn’t seem fair about that. I met a girl once that had P when she was 18 also. Just a few little guttate bits that went away. She said exactly the same “if this disease is all over my face I will kill myself’. It is not something you truly mean at the time but it is not something that ever leaves you.

So you bottle it up, you ‘man up’. You get on with life and try to hide how you really feel. I have been pretty damn good at this. Because of this I have had a great life. I am constantly going abroad, kitesurfing, snowboarding, doing seasons, trying to find anything that will bring a bit of true happiness. That is the problem. I have done all these amazing things and met amazing people, I have a career people dream of, but deep down you do not truly enjoy anything because you don’t want to be here. I wish I could give this life to somehow worse off who could appreciate it. On the outside I look like a smiley happy guy, only those close to me know something is up but it never gets talked about.

I am not a family person. I hardly call my mum and I am pretty sure my lack of communication bothers her. I have always felt very alone but that has been my choice. There is nothing my parents can do to help me and I wouldn’t want to make their lives worse in any way. Dad was a doctor, he stays very quiet about it. I think that is because as a GP he has seen how it affects people negatively. My parents split up when I was 10. My mum became a lesbian and married another woman. I am totally fine with that. I remember when my Mums wife snapped at me for picking on the couch and leaving my skin. P is quite disgusting to be fair. My mum just thinks I am a drama queen and she thinks it is not a big deal. I think recently she has started to realise how damaged I am. I know I am damaged because I don’t cry much, but as I write this tears stream down my face. I am only writing this so I stop having fake conversations with myself about it in my head and sometimes out loud when alone. I would like to go and talk to someone about this but it is not the best idea. I would feel a bit sorry for them, I am beyond complicated. In England it is unwise to go and see someone about mental health. One day I would like to volunteer for the RNLI (rescue boat service). For that reason I will never seek help officially. I really want to do the ioaska thing. I know the experience would kick start me into making changes and thinking differently. It won’t cure my Psoriasis though.

It has been a long long time, my skin problem doesn’t seem too bad to people around me. Fortunately I would say mine is moderate. Unfortunately I get it on my face, scalp, all over my hands, on my genitals, elbows, knees and then little bits everywhere. I have guttate and plaque P. In the summer it is not a huge problem. Winter in England with P is the stuff of nightmares. I had a really fun time at school, I was popular and I never had it then. I am SUPER happy I did not have it at school. Anyone that makes it through school with P, I FUCKING SALUTE YOU. Unfortunately, anyone that does have bad P at school is likely to be a shell of a person after all the bullying. I don’t think I will ever have kids for that reason. I am not sure how likely you are to pass it on but even 1% is enough. The thought of having a child that suffers from P throughout school breaks my heart. I would not be able to deal with watching my child suffer like that.

Then there is cannabis. I started smoking it when I was about 15. I have always smoked it. The reason I never managed to shake the habit is the cycle. Summer is get fit and be happy, winter is stay indoors and get high to eradicate the boredom. I developed a bit of a nervous twitch, this is likely due to stress. I was so stressed once I just tensed my entire body for about a minute haha. I think it happened shortly after that. In everyone else’s eyes; all my problems are because of cannabis. The reality is if I stop smoking it, even for long periods I am no different in terms of positivity. I am aware it is not helping. Not smoking it is also not helping.

I once went to see a dermatologist. In the UK there is a long wait list. By the time I got to see her it was 6 months later and summer. I didn’t need to see her then. I needed to see her in winter. The thing I find hardest about all of this is HOPE. Yes there are creams and potions, to me.. these are as pointless as rubbing mint on a tumour. Dovobet genuinely works, its amazing. It gives you hope, you start dating again. You think everything might be ok. Then the P comes right back usually within weeks, you are back to square one. This mental trauma over and over and over is too much. My life is going to hell and back. I just leave it now. If I have to go to a wedding or something I will start using it a few weeks before.

I am now at a point in my life, where I have a good career. I have just started working for myself at home which is dangerous. Way too much thinking and self battling going on.

People tell me I am a good looking guy. They wonder why I never have a girlfriend. If I was a normal positive guy I think I could do well with the ladies. It is very hard to come across as positive and charming when you suffer from a weird kind of constant background depression. Women can smell that shit. That is the one thing I can’t fake. Not to mention P on my dick. It is not always there but I feel like I am done with trying to find a partner. The sad truth is, if there was a cure for P tomorrow and I am completely clear it doesn’t matter anymore. My brain has changed now. I will still be the same mess. I think because I have the potential to be good looking and popular with women it makes it harder.

I met a nice girl once; she was in love with me. We were together for 1.5 years. I ruined it. I wonder if I have the potential to love anyone. That is my longest relationship. I sometimes go for years without meeting anyone or having sex. My sex drive is non-existent now. Women can’t manipulate me with sex at least. That is a positive!

Anyway, I just wanted to just get all this out. It is weird living life as an actor. Summer is around the corner and I am feeling positive. After that is winter so that little bit of positivity I just had, is now gone haha. I am genuinely worried about this winter. I feel like the future for me is a slow unravelling of my mental health for everyone to see. I weigh up my options and it feels like a choice between isolation, suicide or total meltdown in front of everyone.

Another problem is picking. I can’t stop picking it off it is compulsive now. When you pick it off sometimes it reveals semi healthy skin underneath and it looks better. I used to be conscious of leaving a small pile of crispy skin. So I would put the bits in my pocket and then eventually I just started eating them to hide them. Writing this out is so ridiculous. Now when I am alone I constantly pick and eat. It is like if you have ever put your hand in candle wax or glue and let it dry. It is very satisfying to peel it off. Imagine how hard it would be leave the candle wax on your skin, let it naturally fall off and not pick at it. Then imagine that wax is tasty like a nice soft crisp haha. My skin is really tasty after coming out of the sea to be fair. I am very aware this is absolutely disgusting by the way.

I have not lost my sense of humour though! It is probably a defence mechanism. I do tend to look at the big picture in life. We are a tiny super rare life form. There is a lot of us people on this planet. In the grand scheme and all the generations that have come and gone before us, I am very insignificant. If I was to go it would make no real difference to anything. I am also quite aware and realistic. If I didn’t have P or know what it was and I went out on a date with a girl who had psoriasis all over hands. Would I call her back after? Probably not. We are not all shallow broken arse holes like me I suppose.

Although I am not serious about taking my own life at all for reasons stated above. It doesn’t stop me thinking about it. I Imagine what it would be like at my funeral. Thinking of different ways to go that would make it less upsetting for everyone. I fantasize about dying a hero. Saving a drowning child is the classic. I would die a hero and no one would ever know I wanted to end my life. Jumping off a cliff in Switzerland with a wingsuit, no parachute, while on heroin sounds like fun lol. But hey it is only Psoriasis right. ‘It could be worse. I could have cancer’. Psoriasis doesn’t kill you. It slowly tortures you over a long period until you wish you had cancer. What is worse.. torture or dying? People who have cancer.. that is the worst thing right? How awful. I imagine the doctor telling me I have cancer with just a few weeks to live. I imagine him / her saying there is treatment available and me going.. hell no I don’t want that shit! Then I imagine the overwhelming joy I would feel knowing that I don’t have to suffer mentally and physically any more. I would love cancer! I could die and people would have sympathy rather than just think I am a selfish coward. I wonder if I actually would be happy with that outcome if it did happen. I think it would shock people to find out that a lot of people with psoriasis wish they had life ending cancer. I have also thought about my body after. I would hate for someone to have to find me and take my body away. It is not going to happen while there are people that care about me. It is selfish.

One thing that has never been a problem for me is what other people think. I am obviously super bothered about it. But if someone asks what it is or a little boy points at me I don’t care at all. I don’t feel down. I smile and say something like ‘just make sure you eat your greens little man’ But I think this is the acting. I have acted like nothing is wrong for so long I don’t know the difference any more. One thing that really bothers me is the dandruff. I can’t take it. Washing your hair doesn’t get it out. It goes everywhere and I find it fucking disgusting. I remember when I was a kid looking at people with dandruff on their shoulders going “errrr that is rank, why doesn’t he just have a shower’. I have certainly received my punishment for that comment!

I hope someone out there will read this and relate. Maybe someone out there will read this and choose to not bottle it all up. I don’t know if not bottling it up is the right answer. I am not even sure seeking help officially is a good idea. My dad is a doctor and he says the same! It will help you in the short term but suppressing things like this for long periods is some bad chicken. I am going to go smoke a J and watch Game of Thrones now, go watch some death while I think about death lol. its not so bad hey.

Posted Mon 15 Apr 2019 by wendyloish

Hi AnonymousRemains,

I have a son aged 38 who seems to be endlessly depressed. He also suffered from the breakdown of a long term relationship. A lot of what you have written reminds me of him. His solution (if you could call it that) is meditation. Currently he is in a monastery in Burma, and I think that this is doing his mental state a lot of good. There are monasteries that take people who wish to learn and practice meditation, but not actually become monks. Going to Burma may appear to be a bit extreme for you, but there are vipassana retreats in Britain, and I would recommend you try this. I believe it might help you to deal with the depression side of things.

Another way of dealing with the depression might be through diet. And diet should help you get the psoriasis under control. My son is currently trying a vegan thing (fits with the monastery in Burma), but an anti-inflammatory diet should help. For me, personally, FODMAP has helped, but the diet solution takes time to work. One of the things that eliminating certain foods from my diet did was to lift the sort of brain fog that I was in, which my doctors had assumed was just related to "the ageing of the brain". Not true, as I learned when the diet had, after a few months, had its full impact. I think better now, and recall better too. Get sugar out of your diet, especially high levels of fructose. An apple a day does not keep the doctor away!

About your skin, start taking a Vitamin D supplement, or if you are into natural foods, cod liver oil (don't go for the fish oil as it comes from krill, not so hot on the vitamin D level). And if you can manage it, schedule a winter break every year somewhere where you will be sunbaking and swimming in the sea. There are foods containing polyphenols that are anti-inflammatory that might help you as well. Blueberries seem to be the one mostly espoused by the forum contributors, but tumeric also has its supporters.

About that picking, I loved to do that too, especially around my ears. I almost miss it, now that the psoriasis is gone. And I too love Game of Thrones. I love Vikings. All that mayhem, death and destruction! But it is important that it remains a spectator sport.

My final piece of unasked for advice - reconnect with your mother. it will help you, loving and being loved, to get your life back into perspective. Cancer is pain. And pain. Not better!

wendyloish

Posted Tue 16 Apr 2019 7.03am by AnonymousRemains

Thankyou for your advice and kind words. I definately needed to get all those polluting thougths out of my brain. I can tell you actually know what helps P and have been through it all yourself. I was full on diet crazy at one point, suppliments, the full shabang but I was losing a lot of wieght. I came to the same conclusion as you; it feels like it might be helping a bit but I will have to do this for a long time to make a real difference. I did go a bit too hard though. At one point I drank nothing but vegetable juice for 5 days. Terrible idea.

Sun helps my skin so much. I was in the Phillipines last year for 3 months during winter and I didnt have to worry about it. I can't go away like that again easily but a week in the sun when I am at my lowest is a good idea.

The thing you mentioned that I have not fully explored is meditatation. I have tried it before but it is not possible to teach myself. I can't tame this beast. I read about someones vipassana retreat in NZ. It sounds incredibly difficult, I think that will help. Thanks.

Posted Tue 16 Apr 2019 9.31am by wendyloish

Hi AnonymousRemains,

About vipassana, it is all over the place. I live in Australia (lucky me I have sunlight to help my psoriasis) and there are retreats in every state. Just google vipassana and where you are (England for instance). There will be somewhere near you. They run a 10 day course that is manned by volunteers and is free of cost. When I say this has helped my son, I should mention that he has a degree in psychology, so this choice of meditation has not been made lightly or in an uninformed way.

About the diet and lifestyle, that actually gets easier with time, although for me any answer I might have been able to find has only come in my old age, so that the basic damage done to my body by autoimmune attack cannot be undone. So I have to be content with having found a holding pattern and eliminating the pain of psoriaitic arthritis.

The thing about the psoriasis itself seems to be that different people find different paths, so try to find your way back to a less pessimistic one.

Hey, I am 72, my grandmother (a fellow psoriais sufferer) lived to be 99. We both lived full and not always trauma free lives. And my diet (FODMAP) lets me indulge in some things, like a glass of red wine, a good steak, chips, dark chocolate, a diet that you can stick too long term.

wendyloish

Posted Tue 16 Apr 2019 9.02pm by AnonymousRemains

Haha yes I can imaganine a physcologist turning his nose up at hocus pocus. There is no way mediatation cannot be helpful in some way. Have you tried a 10 day vipassana course? It sounds as if people drop out of them like flies because of the difficulty. This is not putting me off though. I know it will be hard for me if I try.

Can I ask what age you developed psoriatic arthritis? I dont have it now but I think by the way my hands feel I will do. I am an animator so this couldbe the end of my career.

For me it is sunshine, exercise, kitesurfing and being social.

Thank you I will cut some bad foods and dairy out for sure.

Posted Tue 16 Apr 2019 11.07pm by wendyloish

Hi,

Yes, I did try the course myself. It was difficult, not talking, not eating after mid-afternoon, up at the crack of dawn. But I figured you can do anything for 10 days. Unfortunately I had health issues (blood pressure and heart), so that the sitting still for long periods was causing me to lapse into unconsciousness as my blood pressure fell. So I have the honour/dishonour of being asked to leave. I was there when in my early 60s. My son tells me that there is a centre in Victoria (the state where I live) which is not so strict and caters for older people. He wants me to try again, but I think I am past it now. You, on the other hand are in your prime, and physically active, so you should have no trouble there. What the meditation appears to do is let you quiet your mind, and stop all the thought bombarment that takes it over (something I noticed from your original post).

About when I developed the psoriatic arthritis, that was probably in my 40s, when I started to get X-rays of my back problems pointing to degeneration in my upper and lower back, and my right knee. I was just told it was "arthritis". it was not until my late 60s that it was identified as psoriatic arthritis, and this was after my brother was diagnosed (he is 4 years older). I have had psoriasis since my late teens. My hands (and my brother's) seem to be unaffected, though, so there is hope for you. One thing, though, I and my siblings have a genetic thing called brachydactyly, unusually short fingers and toes. This may be why our fingers and toes are not a problem. How can you know?

One last thing, only about a quarter of people with psoriasis go on to develop psoriatic arthritis. It might be useful to look at your own immediate family tree to get a better idea of your susceptibility. No psoriatic arthritis in your family should increase your odds of avoiding it. But be cautious, as it is possible that arthritis has not been tagged to psoriasis, so that there has been a misdiagnosis of osteoarthritis where in fact it is psoriatic. I say this from experience.

wendyloish

Posted Wed 17 Apr 2019 11.58am by Roo92

It makes me sad to read this as I have gone through similar. I've had mine since I was 7 and I had to go through school with it. All I could do was be honest about it. Luckily for me I was quite popular at school so was never really confronted by bullying. By the time I got to college I would get episodes where I would have nothing for long periods of time. I'm 26 now and the last year or two it has become out of control. The last week I have been recovering from pneumonia and I have broke out with guttate all over my body bar my chest and face. I'm a teacher and I am dreading going back into school now the weather's getting warmer. Winter is great because I can hide under clothes and I am worried this condition is going to eventually stop me from doing my job. I have periods where I cry and cry because there is nothing I can do about it and I completely get what you mean about the sort of "background depression" that comes with it. I'm going to start using the sunbeds again as they tend to help and watching what I eat. Reality is though there have been periods where I have smoked and drank and eaten shit to excess and I haven't had one patch on my body. So god knows what my triggers have been. I know this reply has offered no real solution or been helpful in any way, but just wanted to let you know that you definitely aren't alone in everything you are feeling. Hang in there though, sometimes it's best to talk with someone who knows exactly what you are going through - my experiences talking to anyone without it have always been negative because they could never understand

Posted Wed 17 Apr 2019 6.05pm by AnonymousRemains

Hi Roo,

I am very sorry to hear you have been suffering because of this. And super glad to hear you made it through school, its very brave of you. It sounds to me like pneumonia would definitely trigger a flare up. How the fuck did you get that!? I really hope that once you have made a full recovery you will find a way to calm it down and be positive. I am not really the one to be giving out advice! I do find a 3 min sunbed once a week really helps. Not in winter though. Do you live in the UK?

I soooo agree with you re the drinking, smoking and absolutely no connection to Psoriasis! There have been times in my life where my skin has been great and I am being the worst I possibly can be to my body haha. I have a theory about this.. every year I go to Amsterdam. I go to a festival for 3 days and have a big blow out. All the drugs, partying and hardly any sleep. By day 3 my skin is almost clear. Its crazy and it doesn’t make sense. I was thinking ‘is ketamine the cure!?’ I believe that after 3 days my immune system is having a hard time and it is supressed in a way. Similar to biologics. I think my immune system is going ‘lets forget about psoriasis and get all this bad stuff out’. Also sleep deprivation without any the other stuff; I find this clears up my skin also. Not the healthiest way to treat it.

It is refreshing to know that there are others out there that understand. You’re right people who do not have this could never understand how it makes you feel. I feel much better today, the complete opposite in fact. It was good to get all that out. I have even been for a run, it feels like summer. I really hope you also feel better soon.

Posted Wed 17 Apr 2019 8.01pm by Roo92

God knows how I got pneumonia! Body's way of punishing me for enjoying myself recently....I don't know! It's shit though, I can tell you that! Really pleased you are feeling better, sometimes it's just good to get absolutely everything off your chest, especially to people who can empathise!

Im from the UK, I'm Midlands based so the sun definitely is in short supply here, but you are right, today has been nice :)

Starting to be enticed by your Amsterdam blow outs and have to agree, maybe it's some sort of (unhealthy) supression.... who cares if you are having fun though, right?

Well I'm always here if you fancy a chat, although not the conventional way. Keep on smiling!

Posted Thu 18 Apr 2019 8.24am by AnonymousRemains

That sounds like a tough one to recover quickly from!

I have always thought it is strange that doing all the things you’re not supposed, at once, makes it a lot better. I was kind of hoping that was the cure haha.

Likewise, if you are ever feeling down, drop a message on here. We can chat. I hope you feel better soon.

Posted Tue 25 Jun 2019 3.38pm by Jenna1985
33 Year old living with P for 16 years

Guys I hope yous are well and well done on talking about how p negatively affects mental health/confidence and so on, not many people would do this so well done!

I have had p since i was about 16 (now nearly 34) I have had days where i feel so low and other days where i don't actually care what people think. The worst part is when people look at you thinking they are going to catch it!!! Drives me insane!!! Keep going and remain positive!

Posted Sun 21 Jul 2019 0.43am by psoriasis123

Thanks for sharing your story, I had psoriasis on my face, luckly it wasn't scaly it was just red, and it wasn't fun but tbh it wasn't horrible either. Its very much worth waiting for a dermatologist, after 4 months I got an appointment and within a month I was on a course of UV narrowband treatment, and the results have been fantastic, I've been posriaisi free for 3 months, its starting to come back but only reedness not scallyness and it's not itchy. But I think that psoriasis is just a aesthetic problem, I know it's a clique but it dosen't matter what you look like, you properly beautiful anyway.

Posted Tue 13 Aug 2019 5.46pm by ParisDream

Let me start off by saying, THANK YOU FOR SHARING THIS!

Last night, I read your post about five times (AnonymousRemains). I didn't know someone else out there felt the same exact way as I did. Seriously, your ENTIRE post lol. I've had ps since 5th grade. I'm 19 now. I went through middle school and high school with ps. It was the worst. Now, I have to get through college with it too. In school, I would sit in the back just in case I had ps on my neck or dandruff on my hair. I would make sure that my back was always facing a wall and not my classmates. I still do it in college today, even though I would rather sit in the front. I don't like admitting it, but I even chose a career that was "right" for ps. I wanted to become a dermatologist because I've never had a good dermatologist. A few years ago, my dermatologist said "Man, I wouldn't wish ps on my worst enemy" while she was looking at the ps on my arms. I get it. I wouldn't wish it on anyone either, but it still hurt. Imagine going in to see your doctor and he / she has ps too and knows exactly what you're going through. I wanted to be that doctor to people. I decided not to become one because of the stress and I didn't want to talk about skin for the rest of my life. I hope everyone finds something that works for their skin. Don't give up! :)

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