The "let's talk" thread

[mikemcfc]

So my message is that when things are going wrong and you feel shit; it will get better. Keep fighting through it and stay strong.

This, though it is not easy, we can do it. I would also like to add this that I found in the comment section of a youtube video where someone had felt comfort in music.
"Nothing happens to any man which he is not fitted by nature to bear."

 

[peoffrey]

I can’t stop travelling. This year I’ve been to Malaga, Düsseldorf, Budapest, Bratislava, Istanbul, Baku and Berlin. It’s one fuck of a drug.

 

[DRINKLEVEDRY]

I’ve been taking amlodipine for several years. No side effects for me.

Good man bacon suppose we a have different reactions stay happy.

 

[feedthegoat27]

I can’t stop travelling. This year I’ve been to Malaga, Düsseldorf, Budapest, Bratislava, Istanbul, Baku and Berlin. It’s one fuck of a drug.

Amen to that.

Malaysia, Thailand, Singapore, Qatar, Barbados, Tunisia, Las Vegas, Milan, a cruise round the British Isles/Faroe Islands all chalked off this year so far, with Tenerife and Lanzarote still to come before the year is out.

2020 so far has confirmed; Philippines, Las Vegas, Montenegro and a short Med cruise with Majorca stay.

100% addicted, but it's a good addiction :)

 

[Bill]

Thanks a lot mate. It was truly horrible. It’s been very tough at times, but life goes on. I’ve got a lot to be grateful for.

And I should add that I'm going up to Scotland to see the little girl the weekend before Christmas. Seen her quite few times in the last couple of years. Never met either dad before she died, but actually get on well with both of them, which has greatly surprised me. The other dad is a bit straight, but he’s always been fine and respectful towards me; the little girl’s dad is a proper piss head. Can drink me under the table, which is no mean feat. We get on really well. I think he’s sound.

So we all stay in touch. Got a WhatsApp group. They (including parents and step-parent) all stayed at my folks this summer. It was a brilliant weekend.

So, some good has come out of a horrible situation.

Always a running joke on here is how posh you are Duncan, mostly inflamed by you yourself lol but you are in deed class mate.
So proud to call you a friend.

 

[Big Swifty]

The longer I live, am getting more oppressed by guilt about my behaviour towards my ex-wife when I took up with someone else. She (the wife) wouldn't have done the same to me. It was morally inexcusable.

I have been happy enough, but only at someone else's expense.

 

[Dazzle84]

This thread is absolutely amazing. It's totally what the internet should be about - people connecting and helping each other in little ways. Knowing you're not alone helps so much.

I'm going through it at the moment, been put in anti-depressants and I'm having all the fun of the fair with the side effects. I have a good network around me - the big thing is to remember that thought. People want to help - let them.

 

[Bill]

The longer I live, am getting more oppressed by guilt about my behaviour towards my ex-wife when I took up with someone else. She (the wife) wouldn't have done the same to me. It was morally inexcusable.

I have been happy enough, but only at someone else's expense.

The flip side of that is you set her free to find someone to love her, really love her.
You didn't,fair enough, she sounds a good girl , someone out there would make her happy.

 

[cookster]

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.

Pretty powerful stuff Pal, I'm glad you shared.

 

[Rascal]

In January last year i was given a tablet by my doctor for something minor, i had a servere reaction to it which led to my body becoming erythrodermic with psoriasis( i have had minor psoriasis for 20 years) This led to me being hospitalised at Salford royal, covered in grease head to toe, in constant pain and discomfort. Everything they prescribed has failed, light treatment(made it worse) immune suppressants ( dangerously affected my kidneys) and creams. After 10 months i am still virtually house bound. I only go out to the hospital as my body is still 75% covered and the temperature changes play havoc with me. I have bandages on my feet, plastic gloves on my hands. Im out of money but strangely still mentally well. I have my very down times but they will soon be starting me on a treatment called biologics which i have heard good things about(i met a woman in Salford Royal last week who said it was life changing for her) so i try to keep upbeat and positive.

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