You can find the most recent edition of our book Pregnancy and Parenting with RSI for free here or see some useful advice from Karen Jackson from the Dutch RSI Association below
Karen Jackson, Dutch RSI Association
I was impressed with your ‘baby and rsi’ pack – especially the bit where it reminds you that unless you don’t do stuff like cleaning, you will be in more pain and therefore be less patient with your baby. I applied for a home help when I realised that! It’s funny but I’ve struggled with household tasks for years, not wanting to go to the trouble of getting a cleaner just for myself, but now someone else’s well being is involved it’s been much easier to justify.
Perhaps some of the points below might be helpful to your readers?
Washing
I think the pre-birth 30% extra blood flowing around in my body and the hormone Relaxin (sic – great for relaxin’) lulled me into a false sense of security with regard to what I’d be able to achieve once Kay was born. Also I had underestimated things like washing. I only took Kay’s clothes into account but not the (many!) extra changes of clothes for me and Derek. One thing I never knew about baby poo stains on white cotton, is that you don’t actually have to go to too much trouble to get rid of them. The sun does it for you! And there was I scrubbing away, soaking the things in various chemicals, and so on. Durrrr!
Nappies
Pre-formed cotton nappies that you ‘just’ soak and wash at 60 degrees (and insert a fiddly liner into, and peg out on the line to dry, and change more often than disposables, etc., etc.) seemed a great idea at the time but I wish I’d left this environment-friendly bit to the non-rsi sufferers of the world. We now operate a dual system. Kay’s dad’s in charge of cotton nappies, I use disposables!
Bibs
I’ve found the bibs that just pull over the head the best. No trouble to fasten at all. Velcro fastening ones come in a close second. The ones that you tie are hopeless for me.
Job sharing
We are doing pretty well. My husband is in charge of bathing and bedding Kay, which gives him some good contact time with her. It’s a lot in addition to his already busy schedule of working full time, shopping, cooking, massaging, etc. but we are hoping to move nearer to his work to at least cut down commuting time. And at least he’s been relieved of cleaning.
Transport
I live in a 3rd floor flat with no lift and mice in the cellar. Which means a lot of pram carrying if I want to take Kay out in it. I have convinced myself that mice only come out at night (!?) and that therefore it’s ok if my husband carries everything down to the cellar in the morning pre work and takes it back when he gets home. If you know otherwise please don’t tell me.
Spontaneous short trips out I do with a baby carrier in the form of a huge length of cotton jersey (about 3.5 metres), tapered at the ends. It takes some practice but you can spread the cloth in such a way that the weight is really well distributed, even around your hips. The only disadvantage is it’s not easy to get a distressed baby out of there quickly (or indeed to get her back in afterwards!). And it’s sometimes too hot in summer.
We don’t have a car. Trains would be a nightmare were it not for the fact that there’s always someone willing to help you with a pram. If you’re going to do much train travel remember to get a small pram too. They don’t all fit. Kneeling buses are my favourite – a synch even on your own. Trams get the thumbs down – narrow and steppy – though not impossible if you’re determined and it’s not rush hour.
Once Kay can sit up alone she’ll be able to travel by bicycle of course, like all good Dutch babies. We’re looking forward to that!
Feeding
I plan to continue breast feeding Kay for as long as possible. It saves faffing with bottles, is always on tap and is great stuff by all accounts.
One advantage of not working is that I can afford to do that. I use a banana-shaped feeding cushion so that I don’t need to hold her at all, or alternatively I feed her lying down – either on the bed or on the floor. That way when she nods off I can sneak away unnoticed and peg the washing out, make a phone call, type a quick email or whatever. If we’re out and about I find it easiest to sit on the floor with my back against a wall and support her with my legs. Or in a restaurant I do the same but on chairs. It was tough at first to keep my shoulders relaxed while feeding. I tended to ‘freeze’ in one position and not dare to move in case I disturbed her. Sometimes, if she’s crying very persistently, I still make the mistake of grabbing her any old how instead of arranging everything for maximum comfort first. I always regret it. Ouch!
Anyway, the babe awakes so I must away. I hope (some of) the above is useful. I’m cc-ing this to rsi UK and New Z. In case they can use it. You never know. Might save somebody’s hands.
All the very best,
Karen Jackson
International Section
Dutch RSI Association
Quotes from mothers
“Lisa got RSI early in her career. She struggled with it before realising the extent of the problem, but decided not to let it stop her having a child. She now has a two-year- old daughter and works part-time. While raising a child hasn’t been easy, she has found solutions to many of the problems that arise.”
“I’d had RSI for about six years when my partner and I decided we wanted to have a child. At that time, in 2000, I was working full time and attending regular treatments to manage the pain. It was a difficult decision because we were both nervous about the kind of impact pregnancy and looking after a baby would have on my body.”
“I was 31 at the time and my biological urges had set in so I wasn’t going to let RSI leave me with the regret of not having a child. I knew that looking after a child wouldn’t be easy. I also knew I could work out ways to deal with problems that arose. It has proven to be an ongoing process and challenges arise all the time. But having a baby is great fun and she reminds me of what is important in life.”
“During the first trimester of my pregnancy I was worried about my body’s ability to carry a child. I felt because I had one illness something else would go wrong. It took a couple of months to realise that my body could cope just as well as anyone else’s and after that I didn’t worry so much. Being pregnant turned out to be a lovely feeling and I had such a positive attitude towards my body. I was producing another person!”
“The pregnancy was like a holiday from RSI. My pain levels were the lowest they had ever been, I guess it was because of all the hormones. The little pain I did have I could manage through heat, stretching and walking in the pool to keep mobile. I couldn’t have the full range of treatments because of the pregnancy, but these three were enough to get me through.”
“Throughout the pregnancy there was a lot to think about and organisation was very important. My partner and I had to anticipate the problems that might arise and how we would cope so we gathered as much information as we could. We read everything we could find and spoke to other people with RSI who’d had children to learn how they coped. We also found community resources and services we could use, such as community nurses.”
“There were a lot of practical things we had to consider. Finding the easiest options, such as using disposable nappies and finding the highest cot, high chair and change table so I wouldn’t have to lift so far were big considerations. The options weren’t always cheap, though we found that we could invent solutions too. For example, we raised the height of the cot by tapping together Yellow Pages to put under each leg.”
“The labour and birth experience was challenging because there were only a few positions I could use without aggravating my neck or arms. The constant stress and tension didn’t help either, but I got through it. The biggest shock though, as it is for all new parents, was the complete dependence and demands of a newborn baby. I had no idea how hard it was to look after a baby let alone with an injury. Broken sleep, coping with breast-feeding, settling the baby without rocking or patting her and being able to get to treatments were the biggest challenges.”
“Broken sleep was hard because it’s like a form of torture. It affects your ability to think clearly, and with chronic pain your ability to rest and heal at the end of each day. My stress levels and the soreness of my arms increased dramatically and some days I would just be sobbing because there was nothing I could do to ease it. Nor was there any way around it. I had to get up and feed her, no one else could do it.”
“I found relaxation techniques helped when I was trying to get back to sleep and I took every opportunity to sleep while my daughter was sleeping. My partner and I attended the sleep clinic for advice on techniques to get her to sleep longer and wake less during the night. This helped with her sleep time, but getting her to sleep was particularly difficult for both of us. I couldn’t rock her or pat her to sleep so I had to put her down and let her cry which made me very sad. Taking her for a walk in the stroller helped get her to sleep while she was small.”
“Breastfeeding wasn’t easy either. I had difficulty holding her for long periods but I found a number of things to help me. A lactation consultant came to the house to show me the best way to position my daughter when I fed her so I was putting as little strain as possible on my body. This was really helpful because I was feeding eight times a day and had to be able to sustain this. I also learnt how much time was necessary to feed her and how I could reduce the amount of time I was spending. One of the best purchases I made was a special breastfeeding pillow that wrapped around my waist so I didn’t have to use my arms at all. I took this everywhere, even to shopping centres.”
“Getting to appointments for myself and my daughter was a struggle in the beginning. I had a community nurse come to visit me at home for the first couple of months which helped. However, I had to take her to appointments for my RSI and this was hard. Just moving her around was difficult when I couldn’t carry her for long periods. I did find a massage therapist who came to the house which was a huge relief. I also learnt to give self-treatments like baths and stretching when I got sore.”
“Some of the difficulties do take the edge off having a baby because you are always thinking about the strain. Seeing other mums settling their babies and carrying them around was hard at times too. But at the same time having a child is an amazing experience. She is two now and there is so much laughter around the house that I often don’t have time to worry about being in pain. The reality is that there is a lot of happiness and also a layer of complexity.”
“Each stage has difficulties, though I think it gets better every 6 months. Now that she is two she doesn’t need to be picked up as much as she did when she was 18 months old. I can encourage her to do a lot more for herself now which is good. I also think that she crawled and walked early because I encouraged her to do these things as quickly as possible!”
“Inventing and changing is constant. Even now I have to stand back and think about changes that can be made. For example, I recently asked myself – does she still need to use the high chair? I decided that she was ready to use the kid’s table and chairs I had bought, which means that I don’t have to lift her into the high chair any more. I look at each activity and ask myself ‘is this the best way?’ If I decide it’s not, I find or invent another way.”
“My partner is very important to me, he has been so accommodating and supportive. There has always been the extra pressure and the physical load on him has been much greater. From the beginning there have been certain things I couldn’t do, such as bathing our daughter or chopping vegetables. We have different roles and our daughter has learnt this too. She knows that mummy can’t play certain games that daddy can, and she knows that mummy gives hugs on the floor and daddy doesn’t. She copes well with this, I think children just adapt to what you teach them.”
“Going back to part-time work was, at first, a challenge. Now I think it helps me. It’s easier with my daughter in childcare so I can go to treatments without having to take her with me. It also helps to create a nice balance for me. I alternate days at work and home so that I can alternate the types of activities I am doing.”
“Since she was born I have also had to set rules for the overall management of my RSI. This means only going out once a day, carrying her as little as is absolutely necessary, and ensuring that things are within easy reach. Learning to say no to her has been important also, but very hard, especially now that she is learning to talk back!”
“I have had two flare-ups over the past year which have forced me to take four or five weeks off work. Both times it was because my daughter was sick and I had to break my own rules. At those times I had to hold her more than I knew I should because I had no choice – she was ill and needed comfort. There are also times that I have to put strain on my arms by just catching my daughter to stop her falling and that sort of thing. These are things you just have to do with a child.”
“I don’t work full days because my threshold is almost reached through other activities. My managers and most of my colleagues are understanding. I try to be very clear and upfront with my managers about what I can and can’t do. I also try to give them as much room to move as possible and do as much as I can. It’s a two-way thing, I can’t just demand they accommodate me because there is work to be done and other people to think about. There has to be communication both ways and as a result people tend to be supportive and respectful of my situation.”
“I believe something happens to everyone in their life. I was young when RSI happened to me and there have been some benefits. I am kinder to myself these days and take much better care of myself. I am far more assertive than I used to be and it’s because I believe I’m worth it now. I consider these to be good things that have come from my RSI.”
“Life is much less predictable than I thought it was before RSI and I now focus on the journey rather than the destination. These days I think about how, or even if, I am going to get there and ask what the rush is anyway. For the moment I am just focussed on raising my daughter. I’m not negative about my work but it’s not my priority. The only doubt I have is whether or not I will have any more children. My partner and I will have to decide that in the future when our daughter gets a little older.”
“My advice to anyone with RSI wanting to have a baby is that it’s achievable, though it’s not easy. However, while it’s important to focus on getting the ‘mechanics’ of taking care of a child, the joy of being a mother – the joy of creating your child, nurturing your child, taking care of their emotional needs, laughing with your child and loving your child – is wonderful. During the times it does get hard, I found this quote has helped me”
“When the heart weeps for what is lost, the spirit laughs for what is found.”
Sufi Aphorism.
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