Author Topic: 26 years and still each days is a battle  (Read 3102 times)

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Offline ronnie.b

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26 years and still each days is a battle
« on: November 06, 2011, 12:57:21 AM »
Hi all  ;)
After suffering for all my adult life the last 26 years with this cronic condition and currently on 17.5mg of M.T. X  A week and have been for the last 2 years. With havin psorosis for so long its gave me psoratic arthritis in my hands and feet . Well back in the 80,s when there was very little forms ov treatment for this condition I was in hospital a lot of times with at least 75% of my total body covered and at 15 years old I felt like a circus freak and still do to this day .
So I can so relate to anyone who has this condition...and so feel for you.
And its true there is not one single place on my entire body that's never been affected.. internal too.. people who suffer with psorosis must keep there feelings locked away as I.did for many years  its made me a very frustrated and angry man and it so affects my.wife and kids...
Not in the way I'm violent in any way shape or form .. in that my tone can be very Sharp and off with people. I don't realise I'm being that way .. and don't mean to be that way that's the way I am . I would love to say there's high and lows with this condition but for me there's only ever been LOW,S .. depression can get a hold of you before you no it .. and people can be so hurtful in comments and just genral looks that's all it can take somtimes..
I feel like a modern day lepper and can understand the way these people must have felt all these years ago.
You must take each days as it comes and tell yourself tomorrows another day..
And never get into the negative way of thinkin because the doom and gloom only makes it worse..and you must allways tell yourself there's someone out there worse than yourself..
This condition has on a few occasions made me contiplate doing silly things my condition has been that bad with the pains I've had and no matter what pain killers I've ever took don't even touch the edge your body  after years of this begins to deal with the pain in its own way .
Example about 5 years ago I had a accident whilst removing slate tiles from a roof .. took 2 fingers off and was rushed to ae. Where they spent a hour sticking needles where the fingers where supposed to be and to no avale could they numb me ... In the end with my such a high tolerance to pain they stiched them back on with out being able to numb them  .. there was people come to see me whilst this was being done because they had never seen anything like it lol..
So all I can ever say to people who suffer with any form of psorosis your not alone and try and talk to people don't keep your feelings locked away cos u will only end up a very angry person like me ... God bless u all
Shame there's not a market for new skin because I would.be a multi millionaire ... DNA everywhere

Offline ronnie.b

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Re: 26 years and still each days is a battle
« Reply #1 on: November 06, 2011, 07:39:27 AM »
There's often many days and weeks go by I would take a step back and let the world fly by.
Go deeper and deeper into myself and constantly ask myself why.. my children would find me hard to approach they ask there mam why is dad allways grumpy and sad. And try to explain to them can be so hard to do when your four year old runs and trys to cuddle you and forgets the pain it causes you .. in water I mostly find me peace it takes some pain away ..but this illness allways trys to win and drive my family away..  I find it so hard to sleep and have done for a long time I'm lucky to catch three hours a nite .. this illness controls every min of my life ..
Shame there's not a market for new skin because I would.be a multi millionaire ... DNA everywhere

Offline Michael

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Re: 26 years and still each days is a battle
« Reply #2 on: November 06, 2011, 07:45:54 AM »
Ronnie,

Welcome, and thanks for sharing your story.. I think we can all relate to it, some more than others (well apart from losing two fingers!).. Psoriasis can be an isolating disease which is why we setup this site..

Hope you find some relief in sharing your story and listening to others in similar situation...

Cheers
Michael


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Offline ronnie.b

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Re: 26 years and still each days is a battle
« Reply #3 on: November 06, 2011, 08:04:46 AM »
Thanks for the support Michael.. ill try my best to help and support others who suffer with this problem ..
                   Ronnie
Shame there's not a market for new skin because I would.be a multi millionaire ... DNA everywhere

Offline arizona

Re: 26 years and still each days is a battle
« Reply #4 on: November 06, 2011, 08:27:29 AM »
What treatment are you on?


Edited, sorry just re read and saw is mtx

But it seems that is not working so why are they not trying you on something else?
« Last Edit: November 06, 2011, 08:29:43 AM by arizona »

Offline ronnie.b

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Re: 26 years and still each days is a battle
« Reply #5 on: November 06, 2011, 08:54:49 AM »
Hi  arizona
It's the last treatment they have to offer for me I've try,d all the rest .. the mtx is working but very slowly my condition has improved considering I had 70 to 80 % of my total body coverd I'm now about 50 % give or take a flake or 2 .. but they may be takin me off mtx at the end of this month
Because of phybrosis of the liver must have a scan and biopsy done
Shame there's not a market for new skin because I would.be a multi millionaire ... DNA everywhere

Offline penny

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26 years and still each days is a battle
« Reply #6 on: November 06, 2011, 09:38:12 AM »
Hello, I am so 'with you' on what you have said, I have had psoriasis for 34 years and the psoriatic arthritis for 15 years, every day is hard and every day feels like a fight (mostly with myself) the emotional side of this condition is possibly the hardest as we struggle to live as near normal lives as we can. I have been through every medication and none have worked so now it's the strongest pain relief and being left to 'cope' or not.
I too take each day as it comes, I have a good family and they keep me going. Thank you for sharing your story, it helps us all to know we are not alone in this and that many of our feelings are shared by others.


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go mad to stay sane.....

Offline ronnie.b

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Re: 26 years and still each days is a battle
« Reply #7 on: November 06, 2011, 10:33:31 AM »
Hi penny
We can only but try to have that little bit of a normal life we all once must have had ..even if its only our dreams thank you for your words .. the more we learn the easyer it should get
Ronnie
Shame there's not a market for new skin because I would.be a multi millionaire ... DNA everywhere

Offline peter05

Re: 26 years and still each days is a battle
« Reply #8 on: November 06, 2011, 10:44:32 AM »
Thankyou for your story Ronnie I was like you for 22 years & felt the same at times, but luckerly I started humira ('biologic ) 1 year ago & now the p is 100% cleared & the pa 75% better which has changed  my life I hope you can find something to help you,  look after your self

Offline ronnie.b

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Re: 26 years and still each days is a battle
« Reply #9 on: November 06, 2011, 02:05:54 PM »
Thanks peter... humira ('biologic ) I'm sure I've had test for that before they stuck me on mtx 2 years ago .. I'm at hospital in the next 2 weeks for one ov many this month so I'm going to see about some alt meds just hope they don't say what they told me the last time ... This is it  they have nothing els to try unless they have somethin new in triles unlicensed yet been there before..it  comes to somthin when your consultant tells u to take what I think I should have to take to try and contol this condition with m.t.x  i just get sick of weekly bloods but the things you have to do .. thanks again
Shame there's not a market for new skin because I would.be a multi millionaire ... DNA everywhere