Firstly I’d like to start by saying I’m sorry for my slackness in writing this blog, it has not been intentional and I have missed writing it. Time has been the main issue along with so much going on in the last 5 months.
Here is a brief run down of my activities, bought land and started the building process (headache pills needed for that one, especially when it came to dealing with the bank), planned a 70th, organised Christmas celebrations at our house in less than a week, and then packed the house up and moved out and back into my Mum’s house in 3 weeks; and we’ve spent the last month cleaning the house we were renting.
Through this process I have learned so much about my body and joints, things I didn’t realise I could do and push my body to do. But in saying that all of the pushing I did has now come back to bite me and bite me hard. I’ve ground my ankle into dust it feels and my lower back and knees are really feeling unloved. I can however push my body even when I think I can’t go any further as long as I pace it. With a chronic illness such as osteoarthritis you can’t go hard into anything with the all or nothing mentality. Slow and steady wins the race is how I have to approach my life nowadays, which is very frustrating as my mind is still very much all or nothing.
While pacing myself and listening to my body as it screamed in varying loudness, an article I had read a little while ago resonated with me so much more. It’s based on the Spoon Theory which has become quite common discussion among chronic illness sufferers. The gist of it is, when you are chronically ill you have a certain amount of spoons each day that are available to you, and every activity will use up one or more spoons, sometimes unexpectedly. Resting can give you back a spoon.
So for example I have 16 spoons for the entire day, to get up and out of bed and then zombie-walk my way to the toilet would be 1 spoon on an ok day, maybe 2 on a really bad day. Showering and getting ready would be 2 spoons but I get half back from being under the warm water which relieves my joints. Then there’s work, depending on how many customers come in and what tasks I need to get done and my step count for the day vs my desk sitting I use up most of my spoons, let’s say it’s more sitting today so 8 spoons. So I have 5.5 spoons left to get home, deal with my mini zoo and feed them, cook dinner for the man and me, put a load of washing on and clean up around the house. 5.5 spoons ain’t gonna cut it! This is where I need to utilise my energy reserves wisely and where my man picks up the slack and usually becomes my legs for me. While I start a task he may finish it, I may gather up the clothes to wash, he’ll carry the load to the machine as putting that extra weight on my joints is a pain; and then I will put the machine on with the settings needed. Cooking dinner is very similar, I may do the cooking and some of the prep work but hubby will do the getting of things and washing up. If I have to push through and do all of the things then I run into a deficit and start with less spoons the next day. My evenings are spent mostly on the couch resting trying to get some spoons back for tomorrow and when my body has had it enough it tells me. It will shut down and I’ll be asleep in minutes, even if I’m trying to watch my fave TV show. I’ll be out for the next 2-3 hours until hubby wakes me to go to bed.
Nowadays I try and monitor my energy usage carefully and a lot of the time it means I cancel on things I would like to do but know I don’t have the energy for or can’t deal with the level of pain it will bring. Shopping is one of them, I would love to browse the shops and have the girly days out I used to enjoy. Now most of my shopping is done online where it only hurts my bank balance. I really should invest in a mini scooter (happy to advertise it if anyone wants to give me a freebie!) or something but they are so damn expensive and not as young-looking as I’d like.
Spring has finally arrived! In theory anyway. It has been a really long cold winter and I say that every year, and every year I feel it so much more. I never felt the cold and the ache all the oldies would complain about when I was younger despite all of the broken bones I’d had with all of my surgeries. But once I had my hip replacement done I got to experience the “arthritis ache”. I get it in my pelvis on my right side and in my right thigh where the stem of my hip replacement is. I’m fortunate to not have it anywhere else and it is a great forecaster of rain, what baffles me is what all of my other aches and pains are predicting.
At least I’ve been able to keep busy with work and family although by being busy its meant that I’ve been so incredibly sore and tired and have had to medicate more than I’d like and put off certain things when my body has forced me to rest it out. It’s these times that I try to find positive ways to get through the pain and frustration of my body letting me down over and over. In the past I’ve done this with music, if I’m really angry at the world and my body it’s hard rock or metal that I go to. If I need to find the energy to get me through it’s more pop and if I need to just chill out and let my body calm itself and deal with the pain it’s RnB or jazz. Music is still very much my go to for my moods and always will be. An immediate go to on a side note is counting, for example if my body is screaming at me to stop moving but I need to get to the car in the car park which is 200m away I count, only to a hundred and then I start again. It helps me put one foot in front of the other and hope I don’t tangle them and go face first into the concrete, it gives me focus and limits how much I grind my teeth into each other before I reach the car. But when I get to the car it’s the most amazing feeling, the relief, the accomplishment and the reward of sitting down, it’s sooooooooo good! Small pleasures.
Another positive way I deal with life as it is has been through exploring my creative side. In the past I’ve made a total of 2 amazing cross stitch masterpieces hanging on my best friend’s wall and a whole bunch of other bits and pieces like photo tiles, balloon decorations and other crafty things. My latest craze is polymer clay sculpting to make almost whatever you can think of. It has been really good for my hands and developing their strength again. They have been hurting a bit lately and turning door knobs and taps sometimes proves difficult which sucks, so by kneading the dough and shaping it I’m exercising my fingers and hands. Pity I don’t have the energy to exercise the rest of me, hopefully I’ll change that once the weather starts warming up a little and my bones defrost and my muscles wake up from their winter slumber. Hopefully the whole polymer clay phase sticks around for a little while and I can maybe make some cash from my wacky creations. I’ll keep you posted of my Etsy store and I’ll even offer mates rates for any of my prize-winning pieces. On that note I’m going to leave it there, just a short one today so you know I’m still around, watching and waiting. Take care peeps!
Being short rocks! Said no one ever. Well I’m going to change that today.
I was going to write about how hard it is being short and all of the problems us shorties face but I thought I’d go down a different path and help enlighten everyone including myself on why being short can sometimes be awesome.
Now I’ve been short always, it’s not like I was normal height through school and then as a teenager stopped growing, short is who I am. I’m defined by it and I’m going to finally own it!
That doesn’t mean I’m going to stop describing myself as fun-size, because clearly I am and I’m not going to stop getting excited when I meet a fellow shorty and compare how tall I am to them.
While I was sitting here thinking about what to write with my legs dangling off the chair and my toes outstretched to reach the footrest under my desk I started thinking about all of the things I get to do being short, like not smacking my head into anything walking through doors or under trees.
Being able to buy the kids version of something, for example I bought a brand new pair of Dr Martens boots that are youth sized and paid half of what an adult pair cost, I should have got 2 pairs. Didn’t. Next time.
As a kid and probably still could find the best hiding places for hide and seek but adults don’t play hide and seek anymore. But they do play limbo, usually at parties and fairly drunk – I’m great at all of those things!
I could push my way to the front of things like concerts and people wouldn’t notice me shoving them until I had moved away and then didn’t care because they could see over me anyway. Winning!
Having a bath as an adult, a comfortable bath with my legs stretched out sitting there enjoying a block of chocolate and a glass of something bubbly. Best feeling ever after a long week. And enjoying a full shower from the tiny water-friendly shower head instead of dancing around to try and get my whole body wet like my husband does.
Having plenty of room on the bed, any bed, single, queen or king-sized – all are ample. But the bigger the better as they say. Also on that note, being able to sleep anywhere. Traveling is spacious, always plenty of leg room be it a plane, train or automobile. I can even cross my legs and meditate if I felt the need, although these days my hip restrictions don’t allow it, how I miss crossing my legs. Another of the things you take for granted until you can’t do it anymore.
Fists of fury! The power of a swinging fist. I have gone through many a club or bar happily swinging my arms and leaving a trail of fallen men behind me. I have also tripped people up by standing next to them, I call it leveling the playing field.
Killer calves. I’ve always had well defined calves, not many other muscles however. This is due to being up on my toes forever reaching for things, having to walk faster when with taller folk and wearing heels more often than not in my younger days. Now they have been banished to the back of the wardrobe because of my ankle instability and needing more supportive footwear like the Dr Martens previously mentioned. On a side note, heels were a fantastic way to build up my leg muscles, especially my glutes after having my hip replaced. Zumba in a pair of heels, now that would be a workout!
OK so the list of positives is short! But so am I, and I didn’t want to dwell on the negatives of my height, that’s for another blog. Being short isn’t easy, I’m sure being tall has its challenges also. It’s very much a part of my personality and has a lot to do with my attitude to life, the get on with it mentality and feisty nature that I have. As much as I really hate the everyday struggle of not being able to do some things I also love that it makes me stand out and not be one of crowd, if you can see me that is.
On that note I’m going to go and blend into the crowd, and disappear until next time.
**Warning: This is long, get a coffee or tea or martini – whatever pleases. I have included photos to break it up a bit but it’s long and I don’t want to short change you on details.**
So let’s talk about how it all started. I was born a premmie with no major complications other than bad eyesight. I grew up, with slightly bowed legs which straightened up nicely as I was approaching 9 years old. Then life got interesting. For some reason I developed Bone Dysplasia which in my opinion is a term used when doctors have no idea what’s caused something and the bone is growing abnormally. Or for the technical version “Dysplasia is the abnormal development of an organ that causes deformations or defects of one or more bones of the body. Many types of dysplasia can affect the bones at different locations” (health.ccm.net/faq/3557-bone-dysplasia-definition).
This happened in my left knee-joint where it started growing out to the side, which resulted in obviously a funny looking walk and the shortening of my left leg – 2 things that had to be dealt with.
As the doctors weren’t sure of how severe it would get, I think the consensus was to just watch and wait until it slowed down and could be repaired without the bones’ growth being affected too much. As you can imagine I looked funny and school being the social situation that it is and kids being uneducated on social etiquette, I got teased, a lot! I learned some of my best come backs during these years. This change in the lower half of my body also caused my spine to develop a curvature which added to the teasing, as I was only allowed to sit in chairs, as was recommended by my chiropractor. So while everyone else would sit on the floor during class story time I had to sit in a chair. During these difficult social teachings I had a true gem of a best friend that never made me feel different. She would stick up for me when the other kids would say things and even now I’m sure she would punch anyone that said a bad word to me. She would go out of her way to make sure I could feel ‘normal’ when there were so many times I didn’t, having to drag my crutches around and trying to get in and out of places either banging my crutches around or hopping on one leg. Now I’m jumping ahead, let’s take it back.
Anyway the doctors sat on my condition until I was 12 and then I had my first operation, the day I was meant to start high school. As my leg was going out to the side away from my body the decision was made to straighten my leg up just above my knee on the inner part of my leg. So the doctors took a bone scraping from my left hip, cut a wedge out of my femur (bone above my knee) and brought my left leg in towards my right leg, stuck a bit of wire in and put that bit of bone they took from my hip there to make more grow. 12 weeks in plaster and on crutches wearing garbage bags in the shower and I had a straight leg but a shorter one by about 7cm. Damn. 6 months later that was going to be rectified as the shoe lifts were limiting. Sneakers don’t work with all outfits it seems.
August that year I was having my second major surgery to have an external fixator put on and I was going to lengthen my leg 1mm a day doing a quarter turn 4 times a day with a wacky looking Allen key. I spent the next two and a half months lengthening my leg and cleaning my 5 pins every night to make sure I didn’t get an infection. I did however and therefore spent a good chunk of my time on antibiotics, disgusting ‘can still remember the horrible taste’ antibiotics. Needless to say this was a lot to take in as a 12 year old trying to figure out who she was in the world.
Once I stopped lengthening I had to wait for the bone to grow, this took about 5 months. I was an expert on crutches by the end, having been on them for 7 months at this point. And my arms were the size of Sly Stallone, well not quite. But they were big for a 13 year old girl. Now it was time to learn how to walk on both legs again. It was easier than I thought it would be but still a challenge working out all the muscles that had become weak.
Two years later my leg had started to go out to the side again, crap. Surgery again. This one was different to the first one, the surgeon wanted to cut my leg just below my knee or tibia if you want to be technical and insert a rod down the centre of it and then re-attach my leg a little bit over towards my right leg to straighten it up overall. This was very successful and I got to keep the rod in for about two years.
By this point it was clearly evident that all of my time spent on crutches was having a negative impact on my right hip. If I over used it by walking too much it would get sore and require rest. So living this way I managed to keep it going until I was about 24 and then I killed it. We were done, it was over, it had to go.
I had my right total hip replacement done in February after being unable to walk without crutches since July the year before. August of that year my body started to develop withdrawal from all of the pain meds I was on, gee that was a ride I don’t want to go on again. More on that another time though.
The hip replacement was fantastic! And all of the umming and aahing I did while researching how do 24 year olds cope with a total hip replacement (bugger all info out there kiddies) was completely thrown out the window the minute I woke up from surgery and the pain I was in was less than when I went into theatre. I’m sure the morphine helped but it was definitely way better. The only time I doubted that was the first time I stood up non-weight bearing and my leg didn’t feel like it was my own-scared the hell out of me. But it came good. I was on the road to recovery. Complete restrictions in place as I had an un-cemented titanium ceramic hip that needed to grow into its new home of me. Now let me tell you, being as independent as I can be to have to go back to relying on everyone to do everything for me drove me bonkers, but I had to focus on the bigger picture of recovering and building up the strength I had lost.
I made good progress with my recovery and had drastically reduced my pain medication intake and eventually stopped taking any. By 6 months I was a different person and was able to stand for hours if I wanted. I couldn’t remember the last time I had done that. There were many wonderful years there where I had almost no pain and could actually do stuff. I would go shopping with friends and be tired but didn’t need to medicate myself and shut down for the rest of the day. Now that the hip was right it was time to go back to my left knee which again was going out to the side. Arthritis was developing in it and my surgeon wanted to prolong its life as much as possible before a knee replacement was a must. This surgery involved another wedge being taken out of my thigh/femur and an L-shaped plate put in to secure it.
Again my leg looked fantastic at how straight it was. It’s depressing to think about how happy I was to have a ‘normal’ looking leg again despite all of the scars. For most of my life I was made to feel like I should be covering up, to not show the ugliness that was my leg. It’s sad that society makes us conform to a standard model, we’re not allowed to be too fat, too skinny, too short or even too tall, can’t have our teeth stick out or be bald. We are such a judgemental society and yes I’ve done it, still do and should know better. What we seem to struggle to do is accept. Accept people for who they are and who they want to be. Why can’t we be happy to be different. Difference is the key to our survival and so important for us to learn that. So anyway life was good, my body was working again and pain-free, I got about 5 years of that before I went and wrecked my left ankle.
Now having a job that required me to walk a lot, fast and on hard floors along with a lot of standing and in shoes that were not the greatest (because I have the tiniest of feet and wear children’s shoes) I should have known better and A) Got better shoes and B) quit the job, but I didn’t do either and somewhere along the line I injured my ankle but didn’t take much notice and thought some rest, pain and anti-inflammatory meds would ease it and everything would be fine again. It sort of was, it did get better but never quite completely went away. If I overdid it there would be the old routine of meds and rest, the amount of meds slowly increased in quantity and frequency and so did the rest periods. I started to say “No I’m busy” to my friends because I knew I couldn’t cope with the amount of activity required of me and I slowly isolated myself because my ankle was so unpredictable in pain and functionality, I also had a lot of pain just standing on it or more so when I moved off it-my ankle would SCREAM at me! And this is where I’ll leave it for now, more on my screaming ankle to come.
Bones, bones, bones. Mine hate me, or at least that’s how it feels most days.
I’m a chicky babe in my 30’s and have been living with osteoarthritis (OA) since I was about 13. It mostly affects the lower part of my body but I am noticing its travels north.
I’ve had many surgeries to try to improve my OA over the years and I no doubt am due for more before I change state of matter.
This blog is about my journey through the depths of osteoarthritis and what growing up has been like as well as everyday struggles and joys. It’s also going to be about me and the perspective I have of the world at 132cm (4ft 3in), which let me tell you and I will, brings its own set of struggles and joys. On the flip side I married tall, my awesome, understanding and tolerant husband allows me a different perspective on life and helps me through life as I do for him. By the way he’s 180cm (6ft) so you can imagine the level of chiropractic adjustment required on our necks regularly.
I’m a Mum to 2 woofs and a meow who bring me great happi-mess. No, they really do give me so much enjoyment and help me to not dwell on my aches and pains even if they’ve caused them.
I’ve always wanted to share my story and experiences as well as gain more knowledge from others on how to get through life while still enjoying the ride. I hope this will give me that as well as give you something to take away and ponder. I’m not medically qualified or certified and my opinion is just that, my opinion and experience only. Whilst I do have a degree in Science (and was a vampire, AKA blood collector in a previous life) and may rattle off a technical term here or there, if you’re not sure of something I’ve mentioned and its suitability to you please find the right type of resource to help, doctors are a good start.
So to wrap up, I hope I’ve been able to give you a brief insight of what to expect from this blog. And of course I hope you stay for the adventure ahead as I muddle my way through the blogosphere. I promise to keep you entertained and amused with the occasional giggle here and there.