Angie Hollis

10/04/02: Angie Hollis

I began to suffer fleeting joint pains in 1984 at the age of 25 and was referred to a rheumatologist, but due to my blood tests coming back negative I was told that it was all in my head. After getting worse over the next few years and being hospitalized due to a bout of septic arthritis in my hip, I decided that enough was enough and, although I still attended the rheumatologist, he would not treat my symptoms seriously and stuck with his original diagnosis that I had a psychological problem. During this time I was studying for my RGN finals, although I was also a qualified RMN.

After successfully passing my finals I decided to return to psychiatry and moved back to my old hospital in another part of Lincolnshire. My symptoms got worse and I asked my GP to help me get another rheumatologist, which he did, and I was then treated by Dr Swannell at the Queen's Medical Centre in Nottingham.

I was started immediately on Salazopyrin as well as the NSAIDs and analgesics, I remained on this regime for 6 years and throughout this time I continued to attend the rheumatology clinic every 2 months. In 1991 I became pregnant and all medication was stopped and I saw Dr Swannell after the birth of my daughter. As the illness appeared to be in remission I was discharged from the hospital and remained well for a further 6 years.

In 1997 I suffered a bout of influenza and my arthritis returned with a vengeance. I visited my new GP, as I was now living in the Nottingham area, and he wanted me to give up work and advised me to apply for disability allowance and, authorised me to obtain the orange badge as my mobility and activities of daily living were now severely impaired. I was assessed by a doctor for the DHSS and was granted the Disability Living Allowance for life.

I returned to the care of Dr Swannell who then started me on steroids and Methotrexate as well as the analgesics and NSAIDs. Despite this regime, I was still not controlled and eventually ended up on the maximum dose of methotrexate. Dr Swannell retired and I was placed under a new rheumatologist. My cocktail of drugs increased further and I was prescribed Amitriptyline to help me sleep at night. In July 2001 I came back from a holiday abroad with my daughter who was now 8 years old. During our stay away I had a relapse and she had to assist me with dressing and other activities. I had originally booked a last minute self catering holiday but luckily we were transferred to a hotel. Whilst there I was glad that we had been upgraded because I realised that we would not have been able to cope. On our return to England I suffered another severe attack and, after discussing this with the new consultant, I was told that I would have to live with the illness. My new partner had to do everything for me and he eventually insisted that I go to my GP and get things sorted out. My steroids were increased to 40mg daily and it was suggested that I was put on morphine to control the pain, this I refused. My GP then reluctantly asked me if I could afford to see another consultant as a private patient, I agreed to this and saw another rheumatologist within three days, this was in August 2001. My medication was immediately reviewed. My drugs were changed from:- Methotrexate 17.5mg weekly, Diclofenac 25mg twice daily, Diclofenac 75mg at night, folic acid 5mg weekly, I remained on the Tramadol and the steroids, to:- Leflunomide 100mg daily for three days then Leflunomide 20mg daily and my NSAIDs were changed to Naproxen 500mg twice a day and also introduced into the regime was Omperazole 20mg as a precautionary measure to prevent the development of stomach ulcers. I was then put on his NHS list and saw him again within a week.

When I attended the outpatients appointment the following week, there was a marked improvement in my mobility. I was able to start to dress myself without too much assistance and my pain had started to abate. I could now get up the stairs without having to get on all fours and coming down was easier, as I wasn't having to lean on the wall for support. I had given up driving since my return from holiday, as I did not feel as if I was safe to be on the road and, although I had power steering, I found that the joints from my shoulders to my hands were severely inflamed and my reaction time was impaired.

My GP had made a referral to the local social services and, after an assessment, I was loaned an electric bath hoist, raisers for the furniture and a raised toilet frame, along with other aids to assist me with personal care. There was also talk about the provision of a stair lift and also a wheelchair for use on my bad days.

In September I ordered my new car on the Motability scheme and, this time, I went for an automatic instead of a manual. I took possession at the end of October and took back my independence again. My specifications for the new car were a seat that could be raised to give better access, door handles that I could easily use and a petrol cap that I could manage to remove myself. My Ford Focus gave me all of these things and the salesman was extremely patient and good at his job.

As time went by I became more able to cope with life again and take an active role in my business. Within the last eight months I have gone from being practically incapable of doing anything for myself, to being more or less independent and, this is only due to the change in medications and a supportive GP and consultant rheumatologist.

At this moment in time I feel a lot better and can now continue with my life, although it has taken several years, I now accept that I will never be cured and that I have a severe disability, which can only be controlled by medication and surgery. I have in the past undergone a bilateral forefoot arthroplasty to help reduce the pain when walking and, I am awaiting hand surgery for ruptured ligaments and carpal tunnel syndrome.

To accept that you have a disability in my case was very difficult as you always think that you can do the same things that you did in the past, but your body tends to object and this then brings things home to you. I have not worked any shifts as a nurse now since last June as I realised that I was more of a liability than a help, but have been running my own nursing agency business along with my partner. I have worked through the good times and the not so good, but now I know my limitations and try to work within those parameters.

My advice to anybody who has this illness is to get the best treatment that you can and get a second opinion if your treatment is not working. I know that if I had not fought my case I would be wheelchair bound and no use to society. Only you know how you feel and only you know what your limitations are, I'm looking forward to the future with a positive attitude towards life now as well as a cruise in the next few weeks with my daughter. Don't be afraid to ask for help, get as much information and assistance as you need and live your new adapted life to the full. Angie Hollis RMN RGN