Regaining optimism

Louise Jensen, a mother of three from Northamptonshire, UK, who has experienced chronic pelvic girdle pain (PGP) for five years, talks about adjusting to life with a disability and how a change of attitude has helped her to live life to the full.

Pictured is Louise with her family.

I am a mother, I am a wife, a friend, a lover, a sister, a daughter. I am a voluntary worker, a receptionist, a movie goer, a complementary therapist, an avid bookworm. I love animals, meditating, being outdoors and going to gigs. Oh, did I mention I am disabled?

Ask most people to recall three things from the aforementioned list from memory and disability will almost certainly be one of them. I will not allow myself to be defined this way and I certainly hope that this is not the way my children perceive me.

The harshest judge

Being a parent is a challenge at the best of times but throw a disability into the mix and there is the ostensible additional pressure of being judged, although I am never quite sure whether or not the harshest judge of all is me.

Up until 2005, I led an extremely full and active and in all honesty, probably a somewhat selfish life. I had two sons and, although I had suffered with pelvic girdle pain (PGP) during my second pregnancy, which had left me virtually unable to walk, this slowly disappeared after the birth and life was good. In 2004, we decided to have a third child. The onset of PGP came a few weeks into the pregnancy and soon left me virtually housebound unless my husband could take me out in the wheelchair. Afterwards, recovery was slow; I never fully regained my mobility or became pain-free. A car accident in 2008 resulted in a spinal slip and some disc damage, and triggered PGP once again. Fast forward two years, throw in osteoarthritis in both knees and hyper-mobile joints, and with regret I think my marathon running days are over.

Adjusting to a new lifestyle

It has not been an easy journey to get to where I am today mentally. Physically I adapted quickly; crutches were necessary at home and going out required a wheelchair. Psychologically, though, I am still adjusting to my new enforced lifestyle.

My eldest two boys, now 16 and 12, remember me playing football, running up and down hills with kites, and bike riding. My youngest son, aged five, asks me all the time if my legs are well enough to drive him to the park or take him for an ice cream and it is truly heartbreaking. I spent a long time feeling a failure and generally wallowing in a mixture of guilt and self-pity, constantly questioning my purpose in life. However, during the past few months, I have had a complete change of attitude. I have given up waiting for an NHS counsellor (been on the list for 18 months now); stopped waiting for a place on the expert patients programme (not running in my area last year or this year or, apparently, next!); I will not even give page space to the social services and direct payments. The changes are coming from the only person able to implement them — me.

A sense of optimism

I was talking to my eldest son about what he wants to do when he leaves school. “You can do anything,” I said, “be anything; all it takes is the right attitude and plenty of hard work.” I realised then that this is what I was sadly lacking. This coupled with my 12-year-old telling me that I needed to stop reading celebrity gossip magazines and “get my own life” don't you just love a child's honesty? I became conscious of the fact that I could have a life and be a positive role model for my children again; not my old life, but a different life and not necessarily worse. My children deserve that I instil a sense of optimism in them even if I don't necessarily always feel as upbeat as I would have them believe. I realised that I had spent too much time concentrating on what I couldn't do rather than what I could. I was so sad that I couldn't play football with my youngest son I forgot that actually he doesn't like football and much prefers to make things. We can sit at a table for hours making rockets from junk. With a bit of forward planning and imagination there are lots of activities you can do with younger children. I am the Play-Doh queen!

Slowly, I became aware that the restrictions I had encountered through my disability had been mainly self-imposed. Realising this was the key to understanding that even though sometimes I felt imprisoned by my own body, I had, in fact, effectively become my own jailer as my mind was free except for the limitations I had believed would exist. It is true that there are infinitely more obstacles to face as a disabled person in today's society, and even small tasks can take an extraordinary length of time. However, with perseverance, imagination and patience, I have found that I can achieve things I previously perceived to be impossible. Contrary to how this piece reads, positive thinking does not come naturally to me. It is a skill and one which I am constantly working on.

Living life to the full

I still manage to work a few hours a week (yes, I have working mother's guilt as well), not full-time as I couldn't cope with sitting in one position for too long. On top of this, I have also volunteered to do some charity work, have started a home study course and am learning an instrument (OK, so I have bought an instrument which I haven't yet played but one step at a time). Through developing my own interests and hobbies again, I have become happier which has had a positive effect on my household. I have become more confident and hands-on at my children's school. I am ashamed to say there was a time when I avoided the school run as I didn't want to embarrass my children (my feelings, not theirs) but now I am happy to mix with other parents and children and to discuss my disability openly should the situation arise. My children are also happy to answer questions — to them I am just Mum and they love me regardless. I am now looking into the possibility of going into my children's schools to give a talk on disability. I think we all need to take some responsibility as disabled parents to raise awareness of disability and the effects it has on a family.

There was a time when I thought my disability would tear my family apart, that I was no longer useful to them. I realise now that it was me pushing them away. I no longer feel on the periphery looking in on life, I am living it. It is challenging as a mother of three but, in all fairness, having three sons was never going to be an easy ride anyway!

First published DPPI Journal, Issue 73: Summer 2011

No

Want to share your thoughts about this?

(If you're a human, don't change the following field)
Your first name.
(If you're a human, don't change the following field)
Your first name.
(If you're a human, don't change the following field)
Your first name.