When I was seven months pregnant, I couldn’t believe how much it hurt to walk. My baby always ‘sat’ on the right side. I told my obstetrician of my concerns in how painful it was but he informed me that it was perfectly normal and not to worry about it. I ended up leaving work earlier than planned as it became unbearable to walk, I even asked my obstetrician if there was any way that my baby could be taken out earlier because of the pain, as I was private, but he refused, stating that the baby was fine and basically I was to ‘grin and bear it’.
I started labour on 21st May and after steady contractions, 5 minutes apart, my husband drove me to the hospital. After a few hours, they took me over to the labour/delivery room. Then I stopped dilating, so they had to place me on a drip. After a few more hours they said that I was too stressed and I had to have an epidural to get things going again. I was terrified of this as I had a bad back from a car accident a few years earlier but they threatened a caesarean section on me as they knew that I was terrified of that to. I was never allowed to have any pethidine or morphine as pain relief, only gas or an epidural. This took a further 3 hours before we were ready to meet our baby. The epidural did not work correctly and they had to keep rolling me as only one side would go numb, then the other side, so all the way through they had to ‘top me up’ until eventually all the epidural decided to work at once, and I could not feel a thing. It was only meant to be a cocktail epidural, not a full one.
After 1 ½ hours of pushing, a midwife telling me when to push as I was numb from the epidural and an obstetrician telling me push properly otherwise he would bring out the forceps (which he knew I was scared of those too, who wouldn’t be) our beautiful baby daughter was born on 22nd May at 12:25am, 7 pound 11 ounces. I felt numb and exhausted as they wheeled me back to my room at 2:30am.
I woke up feeling very sore but also feeling very proud with the beautiful daughter that I bought into the world only a few hours earlier. I got up to take a shower and I noticed that the back of my leg was stinging. As the day progressed, each time I needed to get up to use the bathroom, it was becoming harder to do because of the pain. By 5pm that day, I was at the point where I was trying to stand on my husband’s feet so that he could walk me to the toilet. By 7pm that night, I was laying in bed crying in agony as I couldn’t even move my toes, let alone my legs as they felt like they were being ripped apart.
The doctors passed it off as hormones affecting the ligaments and the nurses were overheard that night stating that I was making things appear worse than what they really are. The next day they made me have an MRI as they thought that there could be a problem where the epidural was. When they went to transfer me from my bed to the MRI, they slid a board under me but hit my hip and I blacked out. Physios were asked to come in and help me move. They advised the specialists that they thought I had a strange form of sacroiliitis but the specialists said that it was 2 disc bulges found on the MRI that was causing the problems and refused to listen to the physios.
Twelve days went by where I was unable to move, walk, hold or breastfeed my baby because of the morphine, required a cathedar, when I took a turn for the worse. I had such severe muscle spasms ripping through my right leg. It looked like waves rippling on the water. They brought in an x-ray machine as they now thought I had a broken pelvis, but x-ray showed my pelvis wasn’t broken. I was then transferred to ICU, as the spasms were so intense, they had never seen anything like it before. Intensive care was disgusted with the state I was in.
They had to give me an enema as I hadn’t been to the toilet for 12 days, which causes your bowel to press onto your sacroiliac joints, and I was grey in colour. It took nearly three hours to ‘clean me up’ as it wasn’t done properly back in the ward. I was put on a drug called Fentanyl to try and control the spasms. I stopped breathing a few times in ICU and the nurse has to “remind” me to keep breathing by tapping me on the face until I finally took a breath. Then, the hospital tried to “discharge” our baby while I was in ICU, advising us that she no longer needed “caring for” and was not a paying patient. My husband was staying with me, on the floor, so he argued that our baby would not be going anywhere as I was still admitted. They allowed her to stay in the nursery, but advised that they would not look after her in any way. Talk about kicking us when we were already down!
I ended up being in hospital, which was a private hospital, for one month. They came to the conclusion that I was suffering from an extremely rare form of Sacroiliitis, a form that none of the specialist had ever seen before, including my OB/GYN. Most people can get it for 3-5 days after giving birth, where they experience some sciatica pain. We left the hospital with a brand new baby daughter and a wheelchair, as I was now unable to walk. We required the house to be rearranged and modified to accommodate these unexpected changes.
As my husband had to return back to work, we still had bills to pay, I required ‘babysitters’ not only for our baby, but also for me, as I was unable to do anything. I missed out on all the joys a new mother felt and that’s something that can never be replaced.
I had severe muscle weakness, lost 25kg in hospital so I required extensive physiotherapy and hydrotherapy and after nearly 8 months in a wheelchair, I was finally able to take my first steps and learn how to walk again. That was 3 ½ years ago.
The many specialists have since discovered that I now have an extremely rare form of Psoriatic Spondylosis Arthritis, which is basically destroying my sacroiliac joints, pelvis, hips, spine and making my muscles deteriorate. I’m not responding to any of their treatments, including morphine, which is being identified on CT scans, which I’m required to have every 4-6 months. It appears that what would normally progress over two years is occurring in 4 months. They have never seen such an ‘aggressive’ form of this type of arthritis before and as its reasonably uncommon, they are at wits ends to find a way of slowing it down. There is so much that I’m unable to do because of the pain.
So, sitting here now as I write My Story to you, I look up at my daughters beautiful smiling face, she blows me kiss and says ‘ I love you mummy’. I can feel my eyes water up and tears run down my face as I look away. If only she knew. But she will never know. I will do everything I can to ensure that. I don’t ever want her to feel or think it’s her fault. So, I smile back at her, say I love you too darling and catch the kiss and put it on my wet cheek, just as another tear runs down my face.
(December 2006) (
Amanda
