Category: Practical tips for managing PGP

Finding help to stay at home

By Susan Gerald

I didn’t have PGP in my first pregnancy but with my second, I seemed to have pain and difficulty walking or driving in the first few weeks after the pregnancy test told me I was expecting. I am normally quite an optimistic person and felt that I would take this challenge in my stride. Talking it through with my husband, we agreed that the best thing to do was to plan as much as I could ahead of the birth and find practical ways to help me manage. This article is about some of the things that really helped me, which I hope might be useful to other women who find they have symptoms of PGP.

An energetic job

I work for the council as a dog warden which involves a fair amount of walking in town following up sightings of stray or nuisance dogs and also driving the van to the pound. It soon became clear to my employer and to me that I couldn’t manage the hours or the tasks that used to come so easily and I was really struggling as I approached my third month of pregnancy. At first I was nervous about bringing up my PGP symptoms with my boss and discussing ways to alter my role so it was manageable. However, a particularly bad day at work, and just after a good treatment session, made me realise that I had to do something.

Talking to my boss

Actually, my boss was great and we had both thought of the same person who could cover much of the practical work but could liaise with me concerning action to be taken and the associated admin. Together with the HR department, my boss suggested that for the duration of the pregnancy, I could also take on some extra data entry work and phone interviews to keep me occupied for just under my usual amount of hours – I was working part-time as it was which helped. I worked from home most mornings and went into the office when I could. On a bad day when my mobility was particularly poor or the pain was severe, I rang in to talk to my boss and colleagues instead of driving in. Towards the end of the pregnancy, we agreed that I would work mainly from home with more calls in and a few visits from my boss.

I had a laptop from work that I put on the kitchen table and I felt very pleased that I could still work while the pregnancy progressed. I am very lucky that my husband has a good job so money wasn’t as big a problem for us as it might have been. However, all my family live in Scotland, so I was worried that living in Hull would present problems because I couldn’t easily call on my mum and sister for support.

Making some changes to suit my needs

The hardest thing for me was to decide that my son, James, who was about two and a half when I fell pregnant again, should start going to nursery during the mornings and to a childminder for two afternoons a week.

At first I felt very guilty that he wouldn’t be staying at home with me for very long. However, he had started to get very boisterous and I simply couldn’t manage to keep him busy and occupied. Thankfully, it quickly became clear that the transition suited him as much as it helped me. He seemed to love the range of activities at the nursery and wasn’t in the least bit clingy. James also settled in very quickly with the childminder who was a friend of mine and whose son was the same age as James.

Sometimes I couldn’t do much and it was a struggle to keep motivated. However, I did get into a good routine each day where I would get soup ready in a Thermos flask and sit and work at the kitchen table in the mornings and then do a few household chores or some phone calls in the afternoon. My GP had experienced PGP herself and she referred me to a physio early on and that really helped to keep me comfortable and reasonably mobile.

A real stroke of luck

I was also very lucky to have a neighbour, Jan, whose girls were both at college and who wanted to feel ‘needed’ again. Over a cup of tea at the garden centre, she had been telling me how she was lonely because her husband worked long hours and she felt at a loose end. Before I thought much about it, I found myself asking if she could help me for a few hours each day. And that’s how Jan got involved, helping on the days when I was struggling and suggesting some ways she could add value. Jan got on top of the laundry and did several evening meals a week for me.

At first it was embarrassing because she wouldn’t take any money but I managed to persuade her to agree to a basic payment by the hour as she was spending so much time in the afternoons at my house. Over time, she has helped me to get out and about, to use mobility scooters and to take my son to the park. She encouraged me to use the crutches that the hospital gave me and to see my friends rather than just concentrating on housework. Jan’s help was also invaluable when I had my baby, Abi, who is now ten months old.

Jan has really become one of the family and I don’t know how I would have managed without her. She still helps me around the house and with some cooking even though my PGP is much better. The symptoms haven’t completely gone but my physio has helped me to make real progress and I can walk much better and don’t need the crutches. When my maternity leave finished, I went back to the council but decided to move to a different role supervising data entry as my work during my pregnancy showed that I could manage. Jan has been a real support and she says that she feels useful and busy again so the whole experience has been mutually beneficial.

Finding someone like Jan isn’t going to be possible for everyone and I appreciate that not many women will be able to pay for help. However, I would strongly encourage other women who do not have family locally to seek the support of a friend or friends to help out. I know I would have found it very hard to manage without Jan’s support. I would also suggest that it is worth talking to your boss as soon as you can about PGP. I know that my department valued me and wanted to keep me on as an employee. Replacing someone can cost a company a lot of money and over the years, the employer has often invested time and training in you and other employees, so it can be very useful to both you and your employer to come up with ways to manage health issues like PGP and still get tasks done.

Thanks Susan for telling us your story. Planning and looking for realistic ways to get tasks done can help you to feel more in control when you have PGP. Paying for childcare or help around the home can be too much for many women who have no family nearby, and sometimes it requires some very creative thinking and a lot of organising to call in a wider circle of friends or acquaintances to help with small individual tasks rather than relying on one person for a large amount of help. If you have found practical ways around the problems of managing with PGP, please get in touch via our feedback form so we can share them with other women.

Making adjustments to keep your independence

by Lucy Ryan, Co-ordinator, the Pelvic Partnership

I worked for four years as an Occupational Therapy Assistant (OTA) working with Occupational Therapists (OTs) to enable adults with head injuries to manage disabilities and regain independence. I have Ehlers-Danlos Syndrome which affects my joints, particularly in my pelvis and back. I also have many problems with the function of my bowel and have had three bowel surgeries in the last six years.

I have found that I have needed to use a lot of the advice I would often give to my patients when I was an OTA and apply it to my life. I have to adapt my habits and surroundings to accommodate my needs on a daily basis to help me to manage my condition effectively. There are various activities that I need to approach differently and I find sitting or standing for too long or carrying heavy items can aggravate my mobility problems. I wanted to write about my experience because sharing the changes that help me might also be useful to women who read this newsletter.

Background

I am 30 years old and haven’t had any pregnancies but I have a chronic connective tissue disorder called Ehlers-Danlos Syndrome also known as Hypermobility Syndrome. I experience pelvic and back pain and problems, debilitating symptoms which I know can be similar to those associated with pregnancy-related PGP. I was diagnosed with this condition in 2011 after many years of pain and dysfunction in my pelvis, back and bowel.

Similarly to the treatment and management of PGP, manual therapy from my Physiotherapist has been key to regaining better function in my pelvis and back, reducing the pain I experience and regaining my independence. Also, one of the hardest things to change has been to pace my day-to-day activities and exercise so that I avoid muscle spasm and pain, therefore breaking my pain cycle. These changes, along with the adjustments listed below, have enabled me to manage so much more than I thought possible a few years ago.

Practical adjustments I make to manage my life

These are quite simple changes to my usual routines without any significant costs or equipment but they dramatically improve my self-sufficiency:

  • I place heavy items, e.g. saucepans, plates, drinks bottles etc. onto the kitchen top so that they are more accessible which means less bending and reaching.
  • I use a wooden stool in the kitchen (a similar height to a perching stool) so that I can rest when cooking as standing for long periods increases the pain.
  • I take a chopping board on a tray into the lounge so that I can sit and chop vegetables to reduce standing time in the kitchen.
  • I use a step in the bathroom to assist me to get in and out of the bath or shower.
  • I have a raised toilet seat to prevent me from bending too low.
  • I use a sock pull and helping hand aid to help me when I dress.
  • I use a Serola belt for when I walk for additional support (I only use this when my pelvis is in the correct position).

Asking for help

I don’t find it at all easy to ask for help; however, I have come to realise that being stoically independent does not help with the management of my condition so I ask for some assistance from my family and friends with the following:

  • Food shopping: I always buy my food shopping on–line and have someone at home to help with unpacking heavy items or Mr Tesco is often very obliging.
  • Bin day: wheeling out the filled bins is too much for me because they are so heavy; so my family or friends help with this although I often wheel them back in as they are much lighter.
  • Housework and gardening: I need help with hoovering and mowing.
  • Lifting and carrying my nephew and niece: I use my Serola belt when lifting them to keep my pelvis more stable. I also use a ‘Hippy Chick’ when carrying or holding my one-year-old niece for long periods. I taught them to climb onto my lap from an early age to prevent lifting them so frequently and bending so far.
  • I use a lumbar support cushion in my car and a coccyx cut out cushion when out and about for comfort as car seats and restaurant seats can be uncomfortable.

My family and friends are my biggest support and help me manage my life!

Re-evaluating my life

In 2010 I was unable to continue in my role as a Neurological OTA due to the physically demanding aspects of the job. I was forced to re-evaluate my life, let my flat out and move back to live in my parents’ annex. Initially this was a very distressing time. Physically I was using walking aids and struggling to carry out daily activities and emotionally I felt broken. This was when I met Sarah Fishburn, the Chair of the Pelvic Partnership, who lives in my village. Despite the fact I don’t have PGP, Sarah and the rest of the Pelvic Partnership committee gave me hope. With Sarah’s knowledge of treating and managing pelvic problems she put me in touch with a pelvic specialist physiotherapist who worked alongside my local musculo-skeletal physio to devise the treatment plan which still works for me today managing my EDS symptoms. They gave me a sense of purpose at the same time as I began volunteering and became a Trustee for the Pelvic Partnership.

In time I have been able to piece together a working life that is manageable for me. I now work for the Pelvic Partnership as Co-ordinator and Treasurer, I look after my three-year-old nephew and one-year-old niece two days a week with my mum whilst my sister works and I also teach swimming to mums and babies. Each role is adaptable for me when I have flare-ups and I find it incredible how my nephew and niece have adapted to my condition too!

Many thanks to Lucy for describing the ways she has reclaimed her independence and how these have helped her towards greater improvements. Lucy has also been in contact with the Oxfordshire County Council Access Team about how to obtain a referral for an OT assessment and this is outlined below. Although this information relates to Oxfordshire, it is likely that there are similar teams in other areas.

Further Information:

Occupational Therapists can help people to live more independently in their own homes by assessing their needs. They can do this by:

  • providing equipment
  • advising where you can buy equipment
  • advising on alterations to your home
  • finding alternative ways to carry out day-to-day activities

There are two main ways you can see an OT in Oxfordshire:

  • GP referrals: your GP will contact the Social and Healthcare team on your behalf and they will then contact you to assess your needs.

If you live outside Oxfordshire, there is likely to be a similar team for your area. The best way of obtaining a referral is to ask your GP or specialist to contact the team on your behalf.

Access to work:

  • The government runs this scheme to help people with disabilities by paying for practical support, e.g. adjustable tables, supportive seating etc, to enable you to stay in work or start working again. Equipment grants are given if you are employed or self-employed. For more information and how to apply please visit https://www.gov.uk/access-to-work/overview.
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The Pelvic Partnership consists of volunteers who have had Pelvic Girdle Pain (PGP) and wish to support other women. We aim to pass on information based on both research and the experience of other women with PGP. We are not medical professionals and cannot offer medical advice and the information we provide should not take the place of advice and guidance from your own health-care providers. Material on this site is provided for information and support purposes only.

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