Feeling alone...
Posted Tue 30 May 2017 22.42 by Steph
Hello I am new to this, well first of all ....
i have suffered with Psoriasis from the age of 7 and am now in my 30's. I have tried many of the treatments on offer, Light therapy, topical treatments and also auto-immune medication I've had Humira (which worked) but only became available to me as the NHS couldn't give me an appointment within 3 months so apparently that's why I were offered private treatment at a place called "The Yorkshire clinic" wasn't local to me, but I were in the middle of a flare up and couldn't care less the appointment time were short and I needed to be seen. Since that one bout of treatment ended I were obviously back under the NHS and were told I wasn't allowed Humira on the NHS until I had 3 failed attempts at other medications, since then I've had ciclosporine which did help but had been on a year so they then started me on methotrexate, I have recently come off methotrexate as again, I need a break but have been left with just elocon ointment! Bearing in mind my immune system is now coming back full force so it seems I am now covered with psoriasis and my confidence is at an all time low! The embarrassment psoriasis caused me is awful I'm left feeling depressed and anxious, I tried to get into my surgery to see my GP last week to no avail! I ended up going to an emergency doctor out of hours as the 'receptionist ' at my usual surgery didn't think my problem were urgent?! I usually have about 3 -4 bad flare ups per year on average and right now I've got psoriasis in places I never knew possible, this has impacted on my relationship of 4 years which recently ended, he didn't understand when I'd rather shut myself away than go outside where people 'can see it' he said I need to "stop being stupid" and that's what I do feel ... stupid but at the same time I still can't do anything I find it debilitating, I just can't seem to come to terms with it and right now I don't know what to do I'm walking around in the red hot heat with only my hands on show and I try my best to hide them also :(
I just can't cope my quality of life is at zero, that's why I've joined on here hoping to find people that understand.
Sorry for such a long post! X
Posted Wed 31 May 2017 13.30 by Annie
I've just replied to you and the website threw a wobbly. Am sending this to see if it works time!
Posted Wed 31 May 2017 13.40 by Annie
Ok, firstly, you are not stupid, nor are you alone. I suffered for years and tried everything. I then developed psoriatic arthritis and I now inject methotrexate and biologics which has completely removed all of my psoriasis although my related arthritis is getting worse 😡. Keep pestering your GP as not all of them understand the at times, devastating impact in can have in all areas of life...work, play, sex, hot weather, people staring or thinking you are contagious the list goes on. Have you tried light therapy? It worked for me but the dreaded returned after three months. Please try not to be so sad, none of this is your fault..
Posted Wed 31 May 2017 23.08 by Steph
Thank you Annie ...
Yes, I've tried light therapy a few times but it has always been as an inpatient and whilst using Dithranol also, it didn't work. I just think it's getting worse with each change of medication or break in medications, it's so frustrating that something starts to work and then it gets stopped and then the inevitable flare up to look forward to! I'm usually happy and love to meet people but feel embarrassed to even leave the house at times, I know it's something that comes and go's, but along with this, is the emotional roller coaster. I'm so happy and confident when my skins clearer, then within only a matter of days I won't leave my house, as I'm covered again. The worst thing I think is that I've tolerated a couple of relationships that I know were toxic just for the sake of belonging to someone and that I'm not ugly or worthless! I mean how can I be with someone who stuck around...?! when really I know I were being treat badly! Anyway thank you for your reply I think I need to pester my GP as you say as this is something that's taken control, My skin basically dictates my life! And more importantly build up my confidence again. :)
Posted Sat 3 Jun 2017 01.49 by DodgeWC51
Hi Steph, it's not you that are stupid. I've had psoriasis since I was kid, my Mother had it so I knew what it was, never really thought about. One problem is I've found it is my bodies built in stress meter, I'm stressed away it goes., when things are whatever passes for normal down it goes down. . Last year for the first time in 60 years, it went Erythroderma, virtually overnight. One problem is living with the side effects of the various drugs, God I'd rather the Psoriasis half the time, I know how to deal with that. I'm male, so maybe the cosmetic side of it worries me less. It's easy to say 'Pull yourself together' though funny how that seems to be said by people with no knowledge. I can give you one suggestion, your eloquent, sit down and write everything you feel out, put it away for a couple of days, then go back to it and read it cold so to speack. May help you see how you feel and give you ideas of how to deal with it. Do know you aren't the only one!
Posted Sun 11 Jun 2017 13.42 by Jenny39579
Hi.
Firstly, I'm sorry to hear of the bad time you're having of it lately, & you're not stupid at all.
I find that doctors only see psoriasis as a skin condition, & don't really understand of the psychological effects it can cause.
I only really suffer with inverse psoriasis, so it's not the type that can usually be seen whilst wearing clothes.
But, I do suffer with scalp psoriasis which spreads to the ears, & I only feel comfortable going out if my hair is down to cover it up.
I can only imagine what it's like when covered in it!
Anyway, you've had psoriasis far longer than I have, so I won't patronise you with how I treat my psoriasis, but just to let you know that you're not alone - we all feel your pain, whatever type of psoriasis we have!
It might be worth speaking to your doctor about the psychological impact it's having on you though. That's a symptom that needs to be dealt with too,because it can seriously impact on your quality of life.
Good luck, & our thoughts are with you.
Posted Tue 20 Jun 2017 07.51 by Rich
It's a horrible horrible disease never taken seriously by health professionals I never get the chance to see the same one twice and it's like groundhog day have you tried this and that etc......yes I've bloody well tried everything and nothing works. People without p have absolutely no clue as to how much it affects is, all the things ppl have said works for them don't work for me I feel so screwed :(
Posted Thu 22 Jun 2017 00.35 by Katie
Your not alone and not stupid for feeling like that. Every feels like that at sometime but you cant let this illness dictate your life. Life is so short to lock yourself away. If anyone looks or says anything thats their problem not yours. People fear what they don't understand. The way your feeling is a form of grief. The loss of being able to do what you want without thinking. Knowing a flare is just round the corner, not being able to wear what you want and why are people stairing. Before you can have the courage to go out and face people you have to deal with the fact thst yes people will stair snd yes you will have to plan before you go out but ps doesn't stop you living. Just remember you are never alone and how you feel is how you feel but dont let them stop you. Xx
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Posted Tue 26 May 2020 10.16 by Steph
Hello to all that replied to this post! I just thought I would come back to update my progress. Initially, when I wrote this post I Felt depressed and crippled with anxiety, I didn’t know where to turn at this stage, after trying so many different treatments I just felt like I’d exhausted all options.
After writing my original post sadly, I lost my job of 14 years due to ill health (psoriasis) so finding work since is proving quite difficult it’s hard to explain your reasons to potential employers when it’s something you can not see.
At this time I thought enough is enough and ended up being seen by the hospital clinic team, they started me on Cosentyx.
It took a good few weeks to get into my system but once it did the results were amazing! I wish I could upload photos as the comparison from then to now is unbelievable.
I’m happier than I were and since starting Cosentyx I have had 5 holidays abroad!! I’d not had a holiday since being a child previously, so obviously I were over the moon! Even though my skin has improved I find it hard to shake the anxiety I have and am always “on edge” wondering when the next flare up might be, but to be honest it’s nearly a year and a half since my last one.
I’ve found a lot of peace since leaving the toxic relationship I were in, and have worked on building my own confidence after finding out my ex had cheated a 2nd time.
It just “feels good” to be getting back how I once were it’s taking some time but ... onwards and upwards :)
I just wanted to share this as I’m grateful for those who took the time to reply your kind words really did get me through a very hard time.
I hope everyone is doing well and able to make the most of the beautiful weather we have been having!
Stay safe,
Stephanie x
Posted Fri 3 Jul 2020 22.22 by BobbyJean
I love heavy metal xx
I am 59 years old and have had P since I was 13 years old! I have only had topical treatments and light treatment which worked like magic for 3 months. I can totally relate to you young ones! I spent most of my summer months covered up when I was a teenager and avoided anything that involved getting uncovered like swimming or sport! Psorosis does change your life in the most dramatic way. I found a man who excepted me. ( so I thought). Until one day after 35 years of being together and having an argument he finally called me SCABBY! It broke my heart! It made me realize that he never really excepted me after all.
Becos of my age i am older and wiser with regards to P. I don't let it worry me now and I am almost free from this awful disease. Xx
Posted Wed 18 Nov 2020 16.31 by Jane
Hi Steph I know you feel like you are alone but there are more people like our self who are suffering with this, I recently bought the Hannah Sillitoe books radiant & skin heeling expert they have a lot of helpful information in them, I have just started her plan after reading her book, I am on day 2 so let's see where I end up. Jane
Posted Fri 20 Nov 2020 12.47 by Steph
Thank you Jane, I will have a look at her books.
Luckily for me, my Psoriasis has not flared up AT ALL since using Cosentex.
I just get the odd bits here and there now.
My diet is something I’ve never changed but have often thought of the benefit for my skin I eat quite healthy, I have heard that some certain things are bad for Psoriasis, especially any vegetables grown in the dark? So will be useful to read.
Thank you and good luck x
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