Skip to Content

This is my story

It was just over 4 years go I got diagnosed with psoriatic arthritis.  It was a shock, I did not know what was happening.  I was a fit person worked since I was 17 and just lost a computer contract and that weekend my symptoms started.  I could not get out of bed, my hands/fingers were numb, my knees felt heavy and I could not lift my arms up to brush my hair, clean my teeth or do my buttons up and hold things in my hands.  I went from nothing to severe in three weeks.  Blood tests were done quickly I was given some painkillers, diclofenac for the joints.  As it was Christmas I had to wait to get an appointment at the emergency rheumatoid clinic but that was January 4th. This all started on Friday 21st November, my son's birthday.  I was also going through a divorce which didn't help as my ex-husband didn't believe I was ill and when I fell down the stairs my youngest son was upset he was 16 at the time and had to watch it all happening.

In the meantime I managed to get another contract and a friend drove from Oxford to Milton Keynes everyday as I couldn't and he knew so helped me by getting me drinks as getting up off a chair killed my knees.  But if they knew I would have been sacked.  So I carried on but I do not know how or where the strength came from. Being in computers I read everything I could about the disease they thought I had and it was data overload.  So I made a decision to pay to see Dr ********** the leading man in rheumatology.  Half an hour paying the top person for £100 to get advice and an idea of where my life was going was worth every penny.  I wrote down my questions, and he made me feel at ease and I would be looked after. I went to the hospital appointment, and was given injections into my right shoulder, right knee and had X-rays, etc.  I walked out in shock and thought my god I have this for the rest of my life what is it going to be like.

Now a year later, I have been ill so often, diclofenac gave me stomach ulcers that burst, I had to stop taking them.  I have had an abscess recently and an emergency operation over New Year.  The hospital do not give me the emotional/mental help I need as I cannot accept this disease and hate taking over 100 tablets a week.  I had to give up my working as a computer contractor and have been on ESA (Employment and Support Allowance) since.  Spent all my life savings before getting benefits and spend a lot of time with fatigue, aching, not being able to move joints.  Being in the heat as I did when I went to Egypt and spent a total of eight months living there was wonderful, no aches, not as many tablets and I felt alive everyday.  Here I am trying to re-train and have done two courses and can now teach over 16 year olds IT which I do voluntarily and hope to do a CELTA course to be able to teach English abroad as a second language in hot countries.

This is my plan then I can choose hours to work even in Oxford to language students and schools locally.  But this has changed my life completely.  I had never even heard of it before and had psoriasis 5-6 years earlier when my dad was dying. I hate it, I hate the tablets, I hate having to give up my career and I hate there are no support groups even at the hospital considering depression is such a common effect for most people and I have clinical depression and a heart defect too.  I have asked for biological injections so I can go back to work and not take toxic drugs and my quality of life would be better but the answer is no, so that is cost. The tablets I take are:  leflunimide, tramadol, co-codamol, lisiniprol, bisoloprol, citalopram and omoxaprole.  I just wish to wake up and it has gone but there are times I think it is better not to be here at all.

The biggest problem is no-one can see the disease, people think they know what it is like as aches and pains and it must be the same as rheumatoid arthritis.  This is my story.

Submitted by a 49 year old female living England

Why not share your personal journey