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.
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.
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.
- Self-referrals: you can contact the Social and Healthcare team on 0845 050 7666 or fill in the contact assessment form online at https://www.oxfordshire.gov.uk/cms/content/submitting-your-own-assessment.
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.