Living with Perthes, without limits

A change of direction for a wee bit on my blog. Something is about to change for me in a fairly dramatic way…

When I was a child I had a bicycle accident riding  down the road to my friend’s house. I can still vividly remember right to the moment I hit the letterbox that sliced the top of my 7 year old left thigh. I ‘came too’ a few seconds later with my right leg suspended in a tree.

Walking back to my house, and Mum, I noticed my thigh sliced deep enough to expose flesh and not bleeding. Of course that was the initial concern. Quite how I walked back still amazes me. Once seeing the gash the screaming and crying started. And summoned my mother…

Cue stitches, recovery and relief I hadn’t cut muscle. As this healed I started to show signs of limping and pain in my right hip.

Many doctors appointments later, growing pains?, no, injury from my accident?, no… Eventually, x-rays, finally identified that something was up with my hip joint.

I’d developed Perthes of the hip (Legg-Calve-Perthes Disease). Essentially it is a disorder that effects children between the ages 4 and 10 years of age, mostly boys. It is considerably rare and therefore not a lot of research has been done to predict, prevent or best course of action. Throughout my life I’ve had to explain the condition to doctors and physicians.

What happens, usually, following an accident or ‘trauma’, is that the blood flow is interrupted and therefore the damaged hip femur head dies rather than heals. Resulting in a flattened head, reducing motion and causing pain by rubbing against the socket. At this stage it is unknown what triggers it and there are varying levels of the condition and courses of treatment.

For myself, I was referred to a doctor that was researching the disease. And at the time he offered my parents two options, let me heal naturally, see how I went, understanding that there were no guarantees my legs would grow to the same length or the level of pain. Or to try a brace or cast for a number of months to keep the leg still. Meaning hospital time and potentially invasive surgery on my growing body.

For my mother’s own reasons, mostly I think, because her brother (my uncle) in the ’60’s was confined in a bed in a hospital away from the family for 3 months at the age of 9. Which was incredibly difficult for him. Decided to let me heal naturally, while being monitored by the doctor over the course of my childhood. My mum dosed me up on dolomite, calcium and anything else she could think of.

Two years of pain and temporarily crutches, to school and around. It is strange though. I only vaguely remember the crutches. Mostly remember bush crashing and climbing trees with my friends and sister. I didn’t do any team sports and was encouraged to cycle as it was low impact. Swimming for anything other than fun has never appealed.

My parents and the adults around me did what they could to help. Including my Grandmother taking me to healing churches, and my parents trying to find solutions for me. What they didn’t do was limit me. I remember being encouraged to cycle, and I have always enjoyed riding bicycles, including mountain biking in my twenties.

As I grew we attended yearly then bi-yearly doctor visits for x-rays and discussion of further action. Always, on the distant horizon, was the hip replacement. At the back of my mind from a teenager it’s been, ‘she’ll need a full hip replacement by 35’. But as a child and young person this seems a very distant future and something that is a long, long time away.

Illness, disease, disorders and accidents that happen when we are children are an odd thing. They happen to us, but the decisions are made around us. This is how it naturally should be. I remember attending doctor appointments and discussions happening but until I was a teenager, I was in attendance. This doesn’t bother me, especially now as a mother to my own children. We rely on the grown ups around us to make decisions for us and to ‘fix’ problems. It does mean that I only vaguely remember treatments and otherwise just got on with being a kid!

The impact it has had on my life is a constant feeling that I can’t and wouldn’t join team sports, mostly because running was uncomfortable and slow, and my feeling that I wouldn’t be of value to the team. This pushed me to cycling as that was up to me. I cycled everywhere.

I don’t remember too many negative comments from my peers. I know there were a couple and have two from boys in my mind, one from intermediate school and another in high school. And this is mostly because Perthes is a hidden disorder. I can walk, stand and move just like everyone else, but my walking, whilst I don’t limp, is compensated for by my knee and my other leg. Making my gait unusual. Kids don’t take well to unusual. The support of my close friends and family though I believe instilled in me a strong sense of self and being confident, tall, friendly and capable in other ways has meant I’ve never allowed this to define my life.

Move on to my twenties and university, boys, London and life! I stopped seeing the doctor once I hit 18 and was studying. Getting on with life. I met friends, my now husband and travelled, partied, hiked, rode and walked everywhere. On occasion it would be a strapped knee to help with dancing in heels all night. Or I’d be tired and sore the following day after traipsing around some gorgeous European city all day. But it didn’t stop me.

I’ve hiked in Peru, rafted in Africa, cycled the most dangerous road in Bolivia. Walked, walked and walked through five continents and never once, thought I shouldn’t. My boyfriend, and then husband has been by my side since school. He expects me to just get on with it too. Only because I’ve never let it hold me back. But he also wears it when I’m tired, frustrated and sore.

Hit my 30’s, back in New Zealand, married and have our two beautiful babies. Pregnancy was good but hard on the body. Sciatica and lower back pain (linked to my hip) slowed me down and cesarean sections for both babies meant slower recoveries. Reduced mobility in my hip and lifting small people caused a lot of lower back pain and discomfort. By the time our daughter was a year old and I was 35 that little reminder went off and I saw a surgeon. I was in a lot of pain, discomfort and feeling quite low that I couldn’t get fit post babies. They talked me out of it then. With small kids, and what felt like being judged I wasn’t in ‘enough pain’ I was told to come back in five years when the kids were bigger and hopefully technology had moved forward even further. I left upset, discouraged and annoyed.

I spent the next few years doing what a could to get fit. Personal trainers, spin class etc. but always feeling pain and discomfort, conscious that the baby weight was adding to the issue.

A move to Bangkok with the family and I had time and resources to walk, walk, bike and swim. Building muscle around the knees for support and remaining mobile is the key for me. Managing pain with pain killers, mostly do I can sleep at night and I’ve been feeling pretty good. At least I can keep up with the kids. However, general mobility reduced and I found a trainer to help me build strength through my body.

Returning to New Zealand with my 40th birthday  imminent and not having to work the moment came to put my case forward again. I want 20 good years ahead of me. Not a constant decline and frustration. Kids, now school age, no longer need to be carried and I want to keep up. My GP put in for a check up and x-rays found further deterioration in the head and osteoarthritis further causing pain. A meeting with the surgeon and without even needing to argue he suggested I have a full hip replacement.

Cue complete surrealism – this has always been on the cards, something that was going to happen ‘sometime in the future’. Not now! 40 is considered young for a hip replacement. I kept thinking of the work I’ve put in to get back to at least being able to keep up. The thought of surgery and recovery freaked me out! How long till I’m back to even where I’m at now??!

Letting go of this thing that, whilst hasn’t defined me, has shaped me. Has been with me since I was a child, influenced my decisions on a daily basis. Caused me to pause for thought. Kept me awake at night. Been a reason that I’m different, a thing I’ve had to explain, understand, live with… will be done. That chapter will be finished, will be behind me. I will no longer live with Perthes but hopefully live a more active life with a hip replacement. I’ll set off airport alarms with my new addition! But hopefully will be up the mountain, at yoga and hiking into my 70’s.

I have one eye constantly on the lookout for any symptoms in my kids. Whilst I’ve lived a good life without limits I don’t want them to go through the same. I possibly parent without to much sympathy for those little knocks. Life has many a knock, but get back up, dust yourself off and keep moving. Move it or lose it! My life motto. Get out there, grab life, do what you want, recognise your limits but try and push them.

My surgery is in a month… let’s see how I go.

2 Comments Add yours

  1. Anthony says:

    I hope it works out marvelously and you are hiking again soon.

    Liked by 1 person

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