Hi Everyone

sheepielover

Hi just wanted to say Hello to everyone and introduce myself, I'm Sue I live in Bolton with my husband of 2 years and our 2 beautiful old English sheepdogs Holly & Daisy.
I have had psoriasis for about 15yrs never knew I had it, I took some anti-biotics and they appeared on my skin , anyway I've managed quite well with creams and such over the years to keep it under control but then in November last year I felt quite unwell. I'm not one to moan I just thought I had a chill as my bones were sore and my joints were swollen, thought I had cold in them got through the festive season as I had people coming but then in Jan I was really struggling at work, very tired. and just really unwell, my skin looked so angry and sore. I went to my doctor, who is lovely and she said oh my god Sue why didn't you come earlier. She said look at it I think you have PA.. I was off for nearly 4 month , at first I had 30 sessions of light treatment 3 times a week to sort my skin first then after blood test and x-rays it was confirmed. In May this year I started on methertrexate and I'm sorry to say it wipes me out. I'm normally a really upbeat person but I'm struggling with my desk admin job been there 20yrs in Feb and I have even asked them for voluntary redundancy to help me, then hopefully I can get a part time job when I'm better moving about perhaps in a shop or something I dont mind just not being sat down all day. when I get up I'm really embarrassed as I'm stiff even after 20 mins and walking like a cripple they say to get up but everyone looks at me, Its awful I just go to the toilet and back, I know the other staff are noticing this as they look at me, also I heard a giggle yesterday, I don't know if this was aimed at me but it felt like it. I don't feel I'm being very productive as I cant type fast as my joints are sore and my concentration is poor writing this has took me ages, even my bum hurts if I'm sat down for any lenght of time I just don't know what to do , they are sending me to see an independent doctor next week.... I just feel if I start talking about it I will burst into tears, I cant afford to just leave I just don't know what to do, sorry to sound grim, can anyone give me any advise please - Thank you

stickywicket

Hello Sue. One thing I would definitely advise is that you should not be ashamed of having PsA. It's an illness like any other. What's to be ashamed about? You didn't ask to have it and you did nothing to get it. I'm sure that you, like me, like all of us on here and everyone anywhere else in the world, have stuff in your life to be ashamed of. This is not part of it.

I know what it is to feel embarassed about taking ages to stand up and then another age to walk across the room but, hey, so what? Thank God we no longer (Well, most of us) believe that illness is a punishment for our wrongdoings. The more we keep doing it, regardless, the easier we feel about it. And the more we realise that, actually, most people aren't looking at us at all as they're too wrapped up in their own lives. Sometimes my husband has to haul me off a low seat. It happened in the pub last night. I made a joke of it to those nearest me. No-one else noticed.

Learn to measure effort rather than achievement. You are probably working harder than any of the others even if you do have less to show for it. Ask to see an Occupational Therapist who will see what can be done to help you in your workplace. And keep talking to us as we do understand where others don't.

sheepielover

Thank You. I will, I'm just going to see what this doctor says next week, when I asked about the redundancy which I ponderedf in my head for ages they said they couldn't as I may work again in the future. I don't really want to think about not working at all but perhaps doing something part time when I feel a lot better than I do now, its funny but just since the change in the weather lately I have noticed it.
I haven't gone sick as I don't like to let them down, but I struggle to get there every morning and don't know hoe long I can do it for, I have even thought if they cant I might just have to leave anyway but need to look into it more, It's so new to me and I'm still finding it hard to get my head round it all but its nice knowing that people on hear understand - Thank you, I really appreciate your reply
Ps love the name - I wasn't very original with mine

stickywicket

Hopefully, you'll feel more settled once you've seen the doc. Please let us know how you get on.

hileena111

Hi Sheepielover
Welcome to the forum......Sorry I can be no real help. I just wanted to welcome you to the forum.
You have got a lot of good advice from SW
I've got osteo arthritis and my mobility is affected.
I also have kypho scoliosis and felt about that the way you feel about getting up and walking slowly. {Curve in the spine}
The doctor said if you saw someone in your position.....what would you think.....Nothing....well they probably don't think anything even if they do notice. She also said sometime when you are out, sit down and have coffee and people watch and see how many people have disabilities of one sort or the other and think "If I wasn't really looking for this would I notice these people" probably not and if I did wouldn't think anything about it. I keep trying to think that when I pass a mirror and think Ohhhhh you look awful
Love
Hileena

suzygirl

Hi and welcome to the forum. It is a good place to vent, exchange ideas and get support. It must be hard working when you are feeling so rough. You are covered by the Disability discrimination act and they have to make reasonable adjustments for you. Have you seen Occupational Therapy? You may be able to reduce your hours, work from home or other things depending on your job.

Occupational Therapy from the hospital can also help with adjustments at home to help you.

Take care

sheepielover

Thanks everyone for your replies it really helps. I have already reduce my hours at work and seen the Occupational Therapist at the hospital, as she has already offered to write me a letter to take to the doctor next week when I see them as she says the job I am in is totally unsuitable, it's like call centre work.
Unfortunately my job and all jobs where I work are desk bound which is not good for me, and they have said there isn't really any other job I can do. I manage quite well at home, as the key for me is to keep moving and resting when I feel I need to. I feel like a different person at home, I don't feel my joints lock up as they do in work, A couple of weeks ago my hand locked on my mouse and it wouldn't move I had to unlock my fingers with my other hand. I mentioned this to my OT as It worried me to death and she said because my joints are swollen it's pressing on the nerve and have to keep an eye on how many times it happens. at least there is a reason , will see what happen next Thursday
will see what happens next week

Jennifer81

Hi and welcome, I am new too :-)

marrianne

A warm welcome to Sue and Jennifer, Sue I hope your feeling a little better ,I was really angry that anyone in your office would laugh ,kindness costs nothing ,you will get tons of support on here ,Jennifer hope you post here ..Marrianne