Jackie - My Story

[jackgray]

Dear everyone who has read and will read the stories here,

Thanks for all your kind words, I am still sitting at work and I have tears i :'(n my eyes.  I have always spoken about my P to anyone who will listen, but to be able to read other peoples stories and their kind words is heart-warming.  Sometime you do feel that no one else understands but hey you all do.

My three children have now been raised with my P.  My middle son asked me the other day why mum do you not really wear skirts?  I started to explain and he just said Oh I forgot about your P.  God I wish it was really like that.   I suppose we can never forget it but you do learn to cope.

An old family friend told me when I was first diagnosed with P "Jackie, it is known that only strong people get P".  I remind myself of this quite often.  I suppose it keeps you kind of sane.

Thanks again for all your kind words, I will definitely visit more often.

Jackie  - just keep smiling

[SJ]

I think very much that I have covered my P in the past not so much for myself, but as you say because of other people and their 'ignorance'. I have always thought other people are not particularly forgiving of difference and, like you, I just can't be bothered with the stares and the being made to feel a leper.

And as for the clothes - exactly. You buy what covers...I always go for the long skirts (in the winter so I can wear tights!) and long tops. As I have had P since I was 8 and went through my teenage years with it, the whole debacle is just second nature to me now...

SJ

[jackgray]

Is it not a testament to human nature how resilient we become.  

One of the worst/funny occasions for me was at a meeting.  I had on the obligatory suit etc.  I am not sure what it is but living with P definitely heightens your sense of awareness.  I felt that someone was starting at me and I started to look around my person and suddenly there I aw that my black suede shoes were covered in flakes of my skin.  The person staring saw that I had become aware of their stares and started to fidget.  

I knew this person quite well but had not spoken about my P.  After the meeting I made a joke about it you know the one "the one about dandruff".  After I explained about my P the person became very embarrassed and the more they tried to apologise the more I laughed about it.  I told them "hey I live with it not you, don't worry these things happen".

When I got home I thought god it's me that has this terrible P thing and there I was trying to make the person who was staring at me feel better.  Does this make me a good person - no I don't think so it's just that having P gives you a very different perspective on life.  God I think I am whittling on but hey I am sure all understand my sentiments.

Jackie

[SarahC]

Hi Jackie

Welcome to the forum and thanks for being so honest and trusting to tell us so much.

I like what your relative told you about only strong people getting P because it appeals to me but I guess really we're all just ordinary people and we all deal as best we can.

The best thing about p for me at the moment is this forum.  Friends and family are sympathetic and supportive but they can't really know the way everyone here can.

So, welcome again and hope to see you around some more.

Cheers
Sarah

ps:  try vodka instead of whiskey, doesn't affect me so bad  

[Jo]

Welcome to the Forum Jackie  

I truly enjoyed and valued reading your history. Partly because it was so familiar (my p arrived when I was about 13 - which is 40+ years ago now! - and I, too, have done all the treatments, the bandages, the different phases .....) and partly because of the way you've accepted it as a fact of your life.

Like you I don't wail and gnash (well, only occasionally  ) because, after all this time, there seems little point. I remember during one hospital stay a patient I knew (because we all knew each other through repeated visits) said 'Why has God done this to me?' and battled and fought and resented her p to such an extent she was clearly not helping herself in terms of managing it.

So thanks .... there is a balance that can be found in living with p ... not 'giving up' (so keeping on with new ideas, new treatments etc.) but also not raging and letting one's p control one's emotions and life!!

Nice to have you as part of the gang!  

Jo

[jackgray]

Dear Sarah

Thanks for your words.  I have to say that my family and friends are also very sympathetic but unless someone has the same illness/condition as yourself then I don't think they can fully understand what you are going through, as much as my family and friends do try.  My father has P on his scalp, elbows and knees.  My sister and one of my brothers has it in the same areas as my father.  Unfortunately I am the one that seems to be following in the foot steps of my dad’s brother.  Covered from head to toe.

My morning routine differs from most apart from people with the same condition.  I get up, remove the flakes from my bed (It’s amazing how good you get at this and how handy you become with a Hoover), go in a tar or dead sea salt bath, put on various ointments and creams (I have P on about 90% of my body), etc etc etc.   And this is before you have breakfast or get your kids sorted or even think about work.

It is amazing how you do just get on with it.

Jackie    

ps.  I really like whisky, did try vodka but had similar effect

[Guy]

Dear Sarah


My
It is amazing how you do just get on with it.

Jackie    

Isn't it just....I think we do a pretty amazing job of it.

guy