What's it like having psoriasis?

[jiml]

Nicely put Kat I can relate to all of that, and I agree this forum is very therapeutic and supporting and helps to dispel the feeling of being the only one with it.

[Fred]

Fred, you summed it up pretty well!  I thought I was weird for seeing how big of a scale I could get off at one time.  

We could have a competition to see which member could get the biggest flake, though I'm lucky as I don't have any now but I do remember getting annoyed if I was peeling off a biggy and it split before I got it off in one piece.  

As supportive as my family is, I felt quite alone at times.  

Yes as much as they want to help, they just can't understand.

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It's nice to know both yourself and Jim say Psoriasis Club has helped, and going by the amount of active members, posts, and visits from guests, it's helping a lot of others too.  

[Caroline]

My situation is a bit different, since I have the enormous luck to have not had the exterior form of Psoriasis. My skin has always been excellent exclude a few scaling between my hair. But my hair so thick, that you cannot see it.
My problems started when I got PsA, which at first was totally not recognized by anyone, e.g. i have been treated for Lyme disease and so on, but nobody knew, until I visited a Belgian doctor at rheumatology. He was clear immediately. You have PsA he said, which I had not heard from ever before.
It could end up a few ways he said, either it is doable or you end up in a wheelchair. Well that is not so nice to hear, I can tell you that.
I went to another hospital for a second opinion, but unfortunately they agreed with the first doctor. In the mean time I had been forced to stop my running activities, which was my life at that time. I ran long distances in an athletics group.
The started me on MTX, there was nothing else they said (this is not the first time I tell this, for the ones that know me I can refer that this was the handsome doctor that said this).
After a few weeks I went back to the hospital, complaining that this was terrible, I could not handle it, my whole body was protesting against this MTX.
I asked to be in trials for biologicals, but was not allowed to. So I walked away with nothing.
In the mean time I had gotten a tip from someone who said, you should go to dr. van Loon. So I tried. A nice elderly man, not at all handsome, but... he had something for me... DMF. He was quite sure it would help. And indeed it did.
I did go back to the hospital, asking them to prescribe me the DMF, but the handsome doctor did not want to do that as it was not a registered medication. If I ever go there again, i'll take my whip with me.

My only concern is of course, will it stay working, this DMF. It is known that sometimes it fails. Luckily I also know people that are on it for already very long times.
But sometimes stories about medications that stop working against Psoriasis do scare the hell out of me.

And now here is psoriasisclub, where I feel at home. Just plain nice people, virtual friends. And a place where I felt it could not be bad to share my experiences on this DMF with others who might be helped by it.

[Fred]

Yes the thought of a wheelchair is frightening, but it rarely happens to that extent. Having said that I've had moments of not being able to move and yes it is not only painful and debilitating, it's also frightening as once you start locking up you start to wonder where it's going to end up.

Your concerns about how long DMF will last is one we all go through, but we just have to enjoy it whilst it's good. As you know I've had problems with some treatments and even my current one (Stelara) I felt has let me down a little after 5 years of use, but they have upped my dose and put me back on the right time between shots and so far all is well again.  But yes we never know if one day it's going to stop working.  

Good to know you feel at home on Psoriasis Club, but you have been here long enough to be classed as part of the furniture now. ................................ Caroline goes off to work out what that English saying means.    

[Grizzly Bear]

Well, for me, the first time i was told what it was in 1990 by our military doc, the only thing that bugged me was the itchy elbows, where it all started.
The stress of being shot at, spat at etc took it's toll on me.
Was i scared ?
Yes, my posterior was twitching like a rabbits nose.
& if anyone says to you that they have been to war & tell you that they were not scared, they are bullshitting or they really are off their rocker.
My P got worse in time, lots of steriod creams, lotions & potions were given to me my the military medical services which helped but over time, my body started getting use to the crap i was putting on me & my P counter attacked by spreading to other parts of my body.


Fast forward a few years, i became a civi again & went back to my home town, bournemouth.

If anyone knows b'mth, it has miles of golden beaches & i use to love to go swimming, but not anymore.

Now, i would dearly love to be able to go swimming but there are no swimming pools here on Emoor as west somerset council closed them down,but the other problem & the main one is, every tom dick & harry stare at you as if you got two heads.

About 10 years ago, i was living in yorkshire & there were several swimming baths & i went to each of them to see if i could swim there but, because they could see i had P, the point blank refused me entry !!!

I know of no swimming baths that has a P only group.

It would be great as at least if there was a P only swimming club, it wouldn't be so embarrassing then.

Mind you, by the time say 20 or 30 of us were flailing around the pool & got out, it might look like porridge after we all got out ?

I could go skinny dipping in the bristol channel but i think i'd rather stick my gentleman's sausage in the blender & switch it on rather than attempt swimming in it.
There is no sand, just rocks etc & the bristol channel looks like the main dumping ground for sewage & nuclear waste, bloody disgusting looking.

Me, i'm very conscious of my P.

Summer time, it finds me on a hot day wearing a long sleeved t-shirt or a shirt with the sleeves down.

99% of my clothing is cotton.

I get really cheesed off with trying to wash the blood out of my clothing & the bedding too.

It does get me down, big time, but i try not to think of it as it will get me down, i try to do things to take my mind off it ......

Someone said (sorry, i forgotten the name) that they disike the clingy clothing after putting oils or whatever it was ?
I took dislike putting on coconut oil, pine tar etc then wearing clothes or worse, getting into bed & feeling the damp, clingy, clammy bed sheets etc......yukky

It's bad enough with all my other medical problems but P really does Pee me off.

Oh, if none of the above makes sense, don't worry, i've had a right big fix of pain killers etc etc & i feel like i'm floating off the planet & i know what i'm trying to say..............i think ???

Thinking of clothing etc, does everyone have cotton clothes etc ?

Sorry to have bored you all to death, i'm off the cover myself in coconut oil.

Be good

[Turnedlight]

Yep, I meant the clammy sheets too..
Love the cats, my cat Oliver looks like that and he's always licking me. I try to not squeal because in his mind he's doing me a favour but I hate it when pets lick you!

[jiml]

A very familiar story , yes it's a very embarrassing disease and swimming in public swimming pools was off limits for me, I didn't have the balls to try to go in , my swimming was in the sea where no one could see me .

I think it's a great idea for a psoriasis group to book out a swimming pool, here I used to book a private one for an hour on a Saturday for the family but even then I was very self conscious even in front of my kids
I like the idea of the porridge good description

Yes I think it gets us all down even though I'm virtually clear it's constantly on my mind
I'm sorry it gets you down big time but I'm not surprised seeing your pictures
Your post made perfect sense and was not in the least boring

[Kat]

We have a pool in the back yard (just one of those above ground types but large enough to relax in) and at my worst, I wouldn't even go swimming in it. It wasn't self consciousness that bothered me, just that I didn't want to shed all those scales in the pool! Perhaps a bit silly of me and I think I'll get some swimming in this year (or splashing anyway, it's only 4 feet of water and 24 feet across)

We did go on vacation last year, stayed at a hotel that had a splash park and pools. I was the most covered up person around and sat on the side lines. Not a fun place for someone with psoriasis, but I did enjoy watching the grandkids have fun.

[bav101]

Never boring mate, having to listen to my sister go on about her dog for hours for me is boring.

Anyway I digress....

Everyone has a valid opinion and yours is just as valid as everyone else's I find it interesting reading everything people have been through with P, for a long time I've never really spoken to anyone about it, as Fred said earlier everyone and there dog has an opinion things to try etc etc, even though they mean well they seem to get offended when you say hey thanks for the suggestion but it wont work or tired it etc etc, with creams and stuff I never put them on just before i'm going to bed, or if i do it'll only be on my hands and face.

I'm with you on swimming in the Bristol channel, if i wanted the ready brek glow I'd eat some not going swimming in nuclear waste, I'm also with you on wearing long sleeves in hot weather and being looked at like a crazy fool.

The only thing I am determined with though, is this thing will not beat me. I will not surrender to it, and it will not stop me from doing what I want to do.

[Fred]

@Grizzly Thank you for you input.

#1 I know Bournemouth, Nice

#2 I can't/don't want to swim, but that is a good idea to have a psoriasis and/or other skin complaints only day, I'm sure it would encourage others to have a go.

#3 It all makes sense to me, and I'm sure others can relate.

#4 Re Cotton Clothing: Yes most of my clothing is cotton, especially underclothes, T-shirts, and Trousers.  

A couple of years ago I got into Bamboo Socks they are fantastic, spend a little bit extra on them and don't go cheap.

We also have Egyptian cotton sheets, pillow cases, and quilt covers. A bit more expensive but sooooooooooooooooooooooo comfy and cosy.

Oh and on a side note, if you live in a hard water area get yourself a water softener it will help immensely. (I don't' sell them or have involvement with any company, but can recommend a reasonably priced source for Europe) Ever been to a hotel and after your shower your skin feels all nice and soft? It's down to the Water Softener.