What I wouldn't give to wake up one morning without pain. I go to bed aching because of my activities for the day, and wake up in the morning aching more...because my slow release pain relief is past due....
I once had my world turned upside down, a few years back now....after a 600km drive from visiting family, I woke to what I thought was just travel aches....as the week went on I noticed more pain, not less....I started going to a physio therapist to try to get relief....my hip was hurting way too much for normal everyday activity.
After two sessions, he noticed my movement was causing greater discomfort than from the week before.....and decided I needed an x-ray.
I was first diagnosed with AVASCULAR NECROSIS of the hip and that I would most likely need a hip replacement within 12 months. We were all in shock, and as the days turned into weeks, my pain meds were increased many times...I remember waking up in the middle of the night screaming, it was like someone had put my foot in a vice and was tightening it even more. I now upgraded from a walking stick to crutches and was having a hard time dealing with my neglect of the house and family.
Can you imagine standing up straight and not being able to scratch your knee? I had to learn how to get dressed (and a stretched out coat hanger became my new best friend for helping put on my knickers), how to climb over the bath to have a shower.....how to get down to the level of the toilet seat, that wasn't fun at all, tears would well up knowing how exhausted I would be just from the act of sitting on a toilet, and getting off it.
I was admitted to hospital for rest and medication review....I was taking morphine every 3 hours and alternating with anti-inflamatories...I never got a break from the pain, I could barely function, the meds were so strong. It was winter and as I am a SAHM I always drove my children to school if it was raining.....I know now I shouldn't have done it, but it would take ages to get into the car, I took a bucket with me to throw up in, as the morphine made me queasy if I was sitting up.....I had taken risks before, but nothing like this, I shouldn't have been driving at all, but you do the best you can with what you have at the time. I thought I was looking out for my children by getting them to school dry. Fortunately I never caused any accidents on the roads, but things could have gone down so differently.
To keep track of my medication, I had a timer, and a meds diary (just a text book). In any 24 hour period I was taken 30 tablets of all kinds, and still never got full relief from pain.
I found a remarkable doctor at a local medical centre, that wanted to know more about why I was the way I was....he ordered a barrage of tests and scans, one being a bone scan....It was the bone scan that found I had TRANSIENT MIGRATORY OSTEOPORIS, and it appeared in the scans in my hip, foot and shoulder. I had no pain in my shoulder, but the scans proved that before too long, that would change. The pain in my shoulder was never as bad as my foot and hip. I could still use my crutches, but now when going to the supermarket; I had no choice but to use a wheelchair. I was incapable of gathering food for my family on my own. It took me all day to prepare an evening meal and I was falling apart. I recall having my husband holding me up in the shower and telling him, I'd had enough, "I'm not strong enough to go through this", "I don't want to wake up anymore", I couldn't stand the weight of the water running down my body over my hip...It was unbearable.
Six, maybe 8 months passed like this. It took the four of us to get the shopping; someone to push me in the wheelchair, someone to push a trolley, and someone picking the food of the shelves. It was a team effort and I was so proud of my family, but disgusted with myself having put this burden on them.
The remarkable doctor was gobsmacked at my meds diary, took them all away, introducing me to pain patches, these lasted 3 days and the script lasting 15 days. Every fortnight my darling husband had to drive me to the doctors. The first day the patches were great (still had pain though, but at least I could talk through it. Day two, the groggy drugged out feeling started to subside. Day three, it’s wearing off and I am looking for meds to help with breakthrough pain. I stayed on the patches for another 7 months, dealing with daily pain (It never goes away), and dealing with meals, household chores, children and family, not necessarily in that order of course. I had learnt to get up earlier than usual to take my meds, so that they had time to kick in so I could see the kids off to school. I have no idea how we would have coped if I was looking after little children, but my boys were old enough to be getting themselves ready for school.
A few more months wore on, and I was introduced to a number of specialists, none of them knowing how to treat TRANSIENT MIGRATORY OSTEOPOROSIS, until I met Dr Riordan. Dr Riordan not only knew of the disease, but treats about one case a year, and treats it well. I started infusions of Pamidronate at the hospital every few months, and slowly my pain dropped, it was the Pamidronate that got me up and walking again. I gave up the wheelchair and was now doing the shopping on my own, still using the crutches, while pushing the trolley. I was off the pain patches and back on just morphine. I could even get the shopping inside on my own by unloading it into the laundry trolley and taking it up the ramp we had built for mum to her little unit. I finally felt like I was looking after my family.
Christmas the next year was closing in and I was determined to give up the crutches, which I did. I walked with a limp, but I walked. I didn't have to rely on any aid to do it. I still wake up with pain every day, still waking earlier to give meds time to kick in before the day starts. I am only on a mild dose of morphine now, and rely on panadol for breakthrough pain. I took my meds nearly two hours ago now, and still feeling pain in my hip. I know though that it will pass and I can get on with my day. You will see that I love working in the garden, I love stockpiling and consider myself to be rather thrifty.
I have learnt to limit my workload to small steps and alternating chores so I don't get tuckered out before the day ends. Sometimes I stuff it all up and find I just have to shut down. Nothing helps with the pain more than lying down for an hour or so, unfortunately that normally happens around 4pm. If I have to go lay down, it really stuffs up meal time, I mean, who wants to cook a main meal for 5 adults when they just wake from a nap? But most of the time I do it, because it's my job, otherwise it’s takeout for us. Except for these occasions I cook from scratch.
Twelve months ago, I had a bad fall in the back yard and suffered a dislocated ankle, torn ligaments, two fractures in the ankle and one in the lower leg. I still limp from that, and it takes a bit to get going in the mornings. Sometimes I wonder why I am taking meds for pain, is it for my hip, or is it for my ankle. I had four operations on my ankle, and it has not been easy. If I had not gone through the turmoil of my bone disease, I wonder how we would have coped, but knowing what I know now, and building the strategies I have built along the way to help make life easier, we have made it!!!
I care for my mother who is 76, she is not a well person herself, but is a very sociable person. I have just made her a sandwich and also packed a pumpkin scone from the freezer and a slice of banana & macadamia bread, which I made in the bread maker yesterday. She is off to bingo today, and won't return until about 3pm.
I am now starting to think of my chores for the day again. If I can get the washing up to date, folded and put away, plant some more seeds, clean a few more cupboard doors in the kitchen, maybe empty one or two wheelbarrow full’s of soil out of the trailer, cook some muffins, get the dehydrator going again, maybe make some ice-cream in the ice-cream maker and clean out my inbox on my emails.....I will be happy, knowing my job is done for the day.
Tea may just end up at the local club, chicken snitzel and chips with salad for $9.00...sounds good to me, I don't want a late night as we are going to the markets after we take my youngest to Tafe (7.45am) for his first day of a welding course. He is so excited, and I'm so proud!!!