Arthritis is not my life

Caroline and Martin Bricknell from Bedfordshire, UK, have a six-year-old daughter, Jess. Caroline talks about how having rheumatoid arthritis has affected her family.

I began having pain in my feet in my early twenties. I was in the police force at the time and put it down to walking a lot. The pain got worse and spread to my knees and hands. I was diagnosed with a form of arthritis when I was 26. It was not until some time later that a hospital doctor mentioned in passing that it was rheumatoid arthritis. I am now 34.

Martin and I decided to try for a baby in 1991 not long after my diagnosis. I did not really worry about how my condition would affect pregnancy, although I did ask my general practitioner about the medication I was taking. He advised me to stop taking all of my drugs, as they could be harmful to the baby. I became pregnant shortly after this but the baby did not survive. This had nothing to do with my arthritis, sadly it was just one of those things. I decided to try for another straight away although I had been advised to wait. I did not take the medication, but it was eight months before I was pregnant this time. Although my employers were sympathetic and took me off the beat, I had considerable pain in my feet, knees, ankles and hands. It was all worth it though when I discovered I was pregnant again!

I had read a number of articles about arthritis disappearing in pregnant women. Happily, this proved to be the case with me, so I had no problems apart from the usual morning sickness and tiredness. I had Jess at 2 am on February 13th 1994 in Milton Keynes Hospital. The labour was pretty short and I used gas and air and Meptid for pain relief. No one mentioned rheumatoid arthritis during the labour. I am sure it was in my notes but it did not seem to be an issue. I stayed in hospital overnight with no problems apart from a slightly raised temperature. But I am sure sleeping next to a radiator turned on full blast caused this! I had decided to give breastfeeding a go and it went really well. I had no arthritic symptoms for the six months that I breastfed Jess, although they returned almost immediately she was weaned.

I had already worked out a few strategies for when Jess was born. I knew bending over to change and bath her would be a problem. My brother, David, bought me a baby bath that sat on top of the full sized one. This meant I could sit on one of those toddler toilet steps and be at the right height to bath her comfortably. I also filled a trolley with all of her changing things and put it in the bathroom. There are two small steps into the room. I used these to ‘bump’ down and to help me get up again, so that I could sit on the floor. Kneeling and bending is very hard for me. I was worried about having enough strength to catch Jess if she fell off a changing table so I thought it would be safer to use the floor. It also meant that I did not have to stand up for too long at a time.

Jess was not a heavy baby although she was very long and ‘bendy’. I worked out a way of picking her up with one hand and the other forearm. This worked well and I never dropped her! We borrowed a car seat. It was really fiddly to put Jess into but we managed. I used to carry the car seat with the handle in the crook of my arm because my wrists were not strong enough to hold it. We spent a long time choosing a buggy. It had to be fairly lightweight and easy to fold up. We chose a Silver Cross brand because it seemed to be the tallest and I am 5’9”. It had wheels that could be fixed or swivelled making it easy to push, which was important because sometimes I could only use one hand. I also liked it because it had a seat that could face both ways and I wanted to see my baby! It was a big buggy but I did not need to get on public transport so this was not a problem.

Jess walked everywhere from the age of about two and half. She has never been the sort of child to run off or climb about. This is lucky because I could not have run after her or kept her away from things. She is very well behaved generally although she certainly knows how to rebel if she wants to.

We did all the usual things with Jess when she was little. Some activities were harder than others. We enjoyed Tumble Tots but because of the lifting and bending involved I found it difficult. Swimming was a lot easier and we both really enjoyed that. Jess went to playgroup and I helped out there.

Jess is at school now and I am very involved. Although the school, which is just across the road, is very old, I do not have any problems with access as it is all on one level. I had difficulty sitting on the small children’s chairs but the teacher just gave me a bigger one.

I do not think the fact that I have rheumatoid arthritis has been any problem since having Jess. I am aware though that I have had a lot of family support. When Jess was small my husband worked shifts, my brother and his wife lived across the road and my mum and dad lived five minutes away. This was fortunate because I was never, at any time, offered help or information relating to my condition and pregnancy, or any advice about the benefits to which I was entitled. I found out about Disability Living Allowance (DLA) benefit by reading a leaflet. The Citizens Advice Bureau helped me fill in the forms. I had no idea about occupational therapists. I finally saw an occupational therapist about two years ago, after I had asked my consultant for a wrist splint. She showed me all sorts of equipment that could have been useful when Jess was little. By this time I had worked out my own way of doing things. She did help me to get a higher DLA rate, which has been very helpful.

I am very lucky that I can afford to be a full time mum because of my police medical pension and DLA. My benefits are currently under review because I asked for an extension on my Motability allowance. It is worrying to think my benefits may be cut, because I am not sure about the sort of work I would be able to manage.

I do think professionals should be more forthcoming with information for disabled parents. Not everyone is as well supported as I am and not everyone is able to ask for the help they need. Somebody from social services visited once, there was talk of a downstairs toilet and I never saw them again!

Arthritis is not my life; it has not stopped me from doing the things I want to do. Jess has not lost out on anything. She is a very bright, well-adjusted little girl. She has to tidy up after herself and do as she is told, but she would whether I had rheumatoid arthritis or not. She is very caring but is not a carer. She is not expected to run around after me or do anything that any other six-year-old would not do. She knows that I have arthritis but only occasionally asks questions. We give her an honest answer and she is fine.

First published in Disability, Pregnancy & Parenthood international, Issue 30, April 2000.

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