A Turning Point in my Life

Winter 2010: Lorna Anton, NRAS Member

I would like to share my story with you.  Three years ago I started to develop stiffness in my hands. I didn't worry too much as I had been very busy cutting back our garden trees.  The previous week, I had been in Norway helping to lay a driveway for my daughter, Siobhan, and her fiancé, Eoin.  It was a strange feeling but I was sure it had something to do with my work outside.  The following week it began to affect my neck and shoulders, and I was having real problems with my right arm.
 
By week 3 I felt really poorly and was sure there had to be something wrong with me to be feeling this bad.  After a number of visits to the doctor and numerous blood tests revealing raised inflammatory markers but nothing else, I was no further forward.  During week 4, I got steadily worse - I could no longer drive as I couldn't turn my head and I had lost the use of my right arm.  As week 5 approached I was almost bedridden - every joint in my body hurt, even my jaw.  I was taking 14 painkillers a day and still in agony.  I really did think I was dying at this point.

Three weeks to Christmas and all I could think about was how do I tell my family.  I didn't think I would see Christmas… how would they cope?

I got some relief in the shower from the warm water.  It took so much out of me to just do everyday tasks like using the bathroom. My husband, Ken, had to hold a cup for me to drink.  I couldn’t do much as my hands were solid and I couldn’t bend them at all.  Ken, the girls and my best friend, Heather, have been wonderful through all of this, the help they have given me has been amazing.  It's at times like this you realise just how important and rewarding family life is.  
    
Midway through week 5, I went back to the doctor again in tears. I couldn’t stand up straight, it was too painful.  The doctor said to me she would get me an appointment within the week and would call me later. True to her word, she called me at 5pm that day to say a Rheumatologist would see me the following day.  

On arrival at the consulting rooms she asked me all about myself and the way I was feeling, then went on to examine me, after which I had an x-ray. Once back in her room she told me she thought I had Rheumatoid Arthritis but needed a blood test to confirm the diagnosis.  I was then given a steroid injection - within a few hours I could move again.
   
You don't realise how important your joints are until they don't work.  Every day I struggled to do everyday things, like hanging out washing, but with help from Ken I managed to peg out 2 items.  I was pleased I could still manage to do this as it is so important to me that I was in control of me, not this illness.
 
(basket of washing)(Caption) I struggled to do everyday things, for example hanging out washing
   
The only slight relief I got was in the shower.  The pain was unbelievable.  Sonia and my neighbour gave me massages and physiotherapy, which in turn gave me a little movement in my right arm.  I found I was very stiff when I woke which eased as the day progressed and by evening was a bit more mobile.  I used to dread going to sleep as I knew I would be stiff again upon waking.

I returned to the Rheumatologist and my diagnosis was confirmed, I had RA.  This was like being hit with a sledge hammer, I was numb.  The doctor told me I would not take in much but everything was in the folder provided.  The doctor was kind and reassuring but I was devastated.  I sat in tears - what was to become of me?  Ken and my daughter, Mhairi, were waiting in the car and when Ken had asked how things had gone I burst into tears. Mhairi just wanted her old mum back. I cuddled her and said I would start to get better soon.

I decided to stay positive.  Advised by the pharmacist I bought a pre-paid prescription to help with the cost of all the items.  I decided to keep a diary to chart my progress and to lose weight to help benefit my joints.  I dreaded taking all these toxic medicines.  I started on the triple therapy, the idea being to hit RA hard in the beginning and hopefully aim for remission. I called NRAS and chatted to Gail, she was really kind and helpful and asked me if I would like to talk to someone with RA.  I agreed and Jess, one of the NRAS telephone volunteers, contacted me the following day and I will never forget how much she helped me.  She was fun, friendly and answered all my questions. She was on the phone for ages, and I felt better having talked to her, as someone who knew all about this condition.

photo above left: I called NRAS and chatted to Gail; she was really kind and helpful

photo above right: NRAS Telephone Support Volunteer, Jess, was fun, friendly and answered all my questions. I felt better having talked to her

Our Rheumatology support network was brilliant. I received letters from Physiotherapy, Podiatry and Occupational Therapy. When the physiotherapist came she examined me and gave me exercises. She told me I had muscle wastage in my thigh with my lack of mobility and said doing the exercises and being a bit more mobile should help.

I now have monthly blood tests and call for the results to fill in my own charts - again I am in control, not the RA. I looked at ways I could help myself, for example by cutting red meat out of my diet. I also read that black cherries could help joint problems so I eat them regularly.  I eat lots of fruit and vegetables, especially the dark leafy kind.  After hearing about the benefits of mangosteen juice I have had some each morning, an hour before I eat.    Whether it really does help or just a placebo effect it doesn't matter, it works for me as I have no pain now.

I keep really well as long as I do not overdo things, otherwise I lose the next day or two exhausted.  It has been a life-changing experience, I no longer work myself to the bone, I work until I am tired then I stop and rest. I do all the things I did before only with more care.  I love running my hands through the earth when I'm gardening because I can, I'll never forget the time when I couldn't.

I was destined to get RA and it hit me so hard, but with the help of my GP and RA team I have come out the other side and I will be eternally grateful for their speed and efficiency in getting my diagnosis so quickly, because of this I have my life back.  I do not know what the future holds, and I don't dwell on it.  What I do know is that I have a loving and supportive family and together we can deal with anything.