Living with chronic pain

Deborah Morgan-Graham from Derbyshire, UK, discusses the dilemmas she faced when she became pregnant.

My decision to become a mother came later in life, as I had always planned a career in nursing. I had hoped to climb the ladder in order to make changes to a health system fraught with unnecessary red tape, which to me, caused problems for patients as well as staff. Little did I know I would find I was fighting from the outside when a car accident ended my clinical career. I had a rotation with flexion injury to my spine from T1 to S1, leaving me with severe pain, muscle spasm and ligaments that do not support my spine properly. This causes difficulties with day-to-day living, such as sitting for long periods of time, lifting and bending, which in turn affects nearly everything I do.

I had worked at one time as a ward sister and climbed the ranks to reach the level of clinical specialist, so was lucky enough to understand the intricacies of the National Health Service. I was able to negotiate my way round the maze of bureaucracy that prevented me from receiving the treatment I so badly needed, to find an end to the pain I suffered.

My life was ‘on hold’ as I was unable to return to any post in healthcare, or start a family, until I had found something that would end this nightmare of pain.

Until you suffer with continuous pain, the total impact it has on your life is quite indescribable. Throughout my career, I had studied how pain has an impact on patients’ lives. Now, as someone with chronic pain, not only do I understand how it overtakes one’s life, but also it has made me want to actively help people in the same position.

Thankfully, I found the drug that removes at least what I would define as the worst of the pain symptoms and I feel the luckiest person to be able to do that. Some people never have relief from the symptoms, which is too unbearable to even contemplate.

I had a year of some relief from pain and learned more about my condition. By March 1998 I had adapted my lifestyle and knew how my body was coping with the chronic injury that I had received in the accident in June 1995.

In January 1999, to my delight, I found I was pregnant! The most difficult aspect of being pregnant, I found, was dealing with some of the health care professionals. They either underestimated my condition, pain and limited movement, or they did not know how to advise or reassure me about the affect of pregnancy on my spine or about the affect of analgesia on my body through pregnancy and on the baby after birth.

During my pregnancy I was in the final stages of studying for my BSc (Hon) in health care and I had access to organisations and information regarding pain, but very little regarding pregnancy and chronic pain. Most of the information was either from the experiences of women in a similar position to myself, or from the drug companies who compiled data regarding women who had taken the type of analgesia produced by that company. Even when I searched through this information, I found it clouded by the fact that the women, who had given information from all over Europe, were few in number, and some had their conditions complicated by taking illegal drugs. Therefore, no actual information was available to me for a comparison to be drawn, or to reassure me as to what I could expect during or after pregnancy.

Armed with the drug company information and the limited data from the European studies, I discussed the findings with my consultant. She organised a series of scans and appointments for me to meet her, the anaesthetist and paediatricians to ensure all of my concerns were addressed. The medical staff were mainly concerned at keeping a ‘stable environment’ for my baby throughout my pregnancy, so I had to maintain a stable dose of analgesia. Treatment can be given to a baby born with a known quantity of a drug received via its mother; it is quite another matter if the amount of a drug is unknown. I had to rethink my lifestyle. Before I became pregnant, I would take my daily amount of analgesia, and then take extra, according to how many lectures I had to attend or essays I had to write. Now I could not take any more analgesia than had been discussed because of the developing baby.

During lectures I had to stand and even driving became more of a problem, as sitting is the worst position for me to be in. If I drive I need to stop after a maximum of twenty minutes and the muscle spasm is so bad that I need to lie flat for at least an hour to ease the pain.

Eventually, with my work completed and my thesis handed in, the months passed and the scans were normal, much to my relief! There followed further discussion with my consultant. She felt that, in view of my spine and pain levels for September 1999, an elective Caesarean section would be best. This was booked.

As my pregnancy progressed to the end of the second trimester, my pain became worse. The obstetric physiotherapist saw me. She told me that my spine was rigid, whereas in most pregnant women the spinal structures are soft and flexible due to the effects of pregnancy hormones. As my spinal structure was disrupted and the major muscles of my spine were supporting the ligaments, which were damaged, the spasm and pain became worse.

I then had to take the decision to increase my analgesia to ease the increasing pain, but this would in turn, worsen the withdrawal symptoms my baby would suffer when she was born. Again I was put in the most awful dilemma. It reduced me to tears on many occasions but the pain was becoming worse so I really had no choice. Either I caused increasing strain to the baby during my pregnancy due to the rising levels of stress hormones in my body from the pain, or I increased the withdrawal symptoms after birth. After further discussion with my obstetrician I increased the analgesia and rested as much as possible.

September 1999 soon arrived and I was booked into hospital the day before the operation. The usual investigations were performed and I was settled into the familiar hospital routine in no time. The team who were to care for me came to visit. Because of the injuries to my spine, they had to ensure that my back was not rotated during any procedures performed whilst under local spinal anaesthesia. I had help from the physiotherapist, occupational therapist and midwives. Although I knew of the role of the occupational therapy department, I often wondered if other mothers in a similar position did. I asked for a heightened toilet seat, which made my life a lot easier.

As anyone with a disability knows, it is the small things that make life better! I asked for advice with regard to positioning, lifting and other problems, which I could foresee, in order to make life easier when I went home with my baby. The ‘birth’ day arrived and I had a beautiful baby girl. The birth itself went smoothly, the staff were marvellous and cared for us so well. All of the concerns I had were addressed and I was reassured each time the paediatrician came to see Elizabeth.

She did withdraw from my medication and was assessed hourly to begin with. I desperately wanted to breast feed. I did this for two days, but I found it so stressful as Elizabeth was suffering from the withdrawal from my medication and she was hungry.

As I had an elective Caesarean section, my milk came in late, and I was upset at my baby screaming, sneezing and shaking from her symptoms. Those two days seemed like an eternity and I discussed how she was progressing with the paediatrician. Elizabeth was not ill enough to require oral morphine, but ill enough to suffer withdrawal. It was decided to wait a further twenty-four hours to see how she was. There was also the added dilemma of breastfeeding. If I continued to breast feed the withdrawal symptoms would be prolonged, if I stopped the worst of the symptoms would go sooner. At this point, I could not wait any longer, I asked the midwives to give her bottled milk, as I felt she was suffering enough without starving as well. In retrospect, I am glad I did this because it was a week later when my milk came in.

When I arrived home, I felt relieved at being in my own home again and in control of events! Elizabeth grew stronger and more alert as the months passed, and I took the excellent advice of the physiotherapist to make my abdominal muscles as strong as I could and to be working out methods of holding Elizabeth to ensure I did not end up with sciatica and muscular pain. I carefully planned how to organise her day, hold her and take her out for walks.

I would agree with the other parents who have written in DPPI stating how they have had to adapt their lifestyles, and that problems are to be viewed as challenges, which can be overcome. I have certainly found my own way around being a parent. The only area I have difficulty with is going out in the car. I could not carry Elizabeth in a small car seat, so when she needed her immunisations or a hospital appointment, I had to arrange for a paid helper or try to organise the time for when my husband was off work. My health visitor knew of the difficulties I was facing and helped me by visiting the house for Elizabeth’s assessments and weighing.

The fact that I could not drive Elizabeth anywhere was a problem. Even now that I have a baby seat in the car permanently, the problem of bending to put her in it causes me great pain as she is increasing in weight as the weeks pass by! So to date, my time consists of taking her locally for walks and arranging to go out when other people are about to help me.

I am facing quite a few difficulties. I live in a rural location and I am isolated, but I am making the most of it by shopping for items using mail order, organising to see my friends and family who help me out when they call and spending quality time with my beautiful little baby girl. I know the problems with mobility will not be forever. When Elizabeth starts to walk life will be a lot easier. As for the future, I hope to start an MSc part- time in September when Elizabeth is one year old. I would also like to help others who find themselves in a similar situation to myself, dealing with chronic pain. I am not sure yet what form that help will take.

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

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  • Janine

    Amazing story, that has given me a lot of information i need.

    I am disabled with chronic pain and would love a baby but the question is how will this work?

    17 March 2021

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