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It could always be worse.. August 30, 2012

After a break up a few years ago, I turned quite spiritual and read a lot of things that made me adopt a new lifestyle..
Basically I wanted to be positive, and happy, and to help people.

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I try to keep these going on a daily basis –  but you cant help but get down sometimes when you’re face with people who are the exact opposite of this, and in turn you think negatively.
The Motto’s that I have are “don’t complain about it unless you’re doing something to fix it”, “There is always someone worse of than you”, “you’d rather regret doing something than regret not doing something and the generic “do unto others that you want on to you  ” – I think you could live a pretty good life if you remember these.

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With my new diagnoses, i’ve explained it to people/healthcare people have talked about it with a compassionate tone, which is lovely, but through out the unknown pain and tiredness, I just keep on going along and sucking it up, trying to not complain about it (unless I couldn’t move that day) –  i’ve had it for so long that I am infact used to it –  with now knowing what it is, all it means is I can better understand it and explain it to people when someone might make a comment of you’re lazy today etc… And even though I probably have a lot harder time than the average joe, I am still under the understanding that there is people worse of than me. I still try and go out of my way to help others, and being the photographer that I am I want to be able to help people with my skill regardless of my situation.

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Take this guy for instance – he has Ehler-Danlos Syndrome – this is in the same family of what I have, but a lot worse –  and hes still trucking along best he can 🙂

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I recently wrote a book with the online mothers group I belong to –  the main drive behind this was because of how my pregnancy was and how ‘the system’ convinced me i’d be fine and convinced me of other things that would happen along my pregnancy, which gave me comfort, and then to find out none of it happened just made me want to get my story out there of how my pregnancy was(and 34 other mums contributed as well), and to let anyone else who’s feeling alone in a situation to feel comfort in knowing that they weren’t actually alone (my book)

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I don’t want to change the world, but my main goal with anything I do is that I want to make sure one person can benefit from something I do, even if its just telling the busy coffee maker at the local cafe that ‘s/he’s doing a good job’. I surround myself with people who I love and bring out the best in me. I would do anything for them, and would only hope to get the same in return. Of course i’m going to have breaking points from time to time, but because of the people I surround myself with, I can communicate how I feel/get it off my chest and this helps me a lot.

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Life is a journey, enjoy it!

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My Issues August 27, 2012

Hello

I haven’t been on here for a while, mainly because of the madness of a toddler and nearly full time photography but I have just 2 weeks ago been diagnosed with benign joint hyper-mobility syndrome and I would like to write about it.
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This is still all very new to me, but my god it’s been a relief to have a label against all the things some doctors kept convincing me were in my head.
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Mum and dad have said that when I was growing up they thought I had growing pains, and when I hit 7 that’s when our local drop in emergency/accident center knew me on first name basis.. I would be constantly going over my ankle with massive swelling- after I was referred and referred again to specialist at starship hospital, they told me that I had triple flex ankles or as common folk know it triple jointed(a little bit more flexible in my ankle joint than a ‘double jointed’ person would be).. I was given new splints for my ankle and was basically trying them out for everyone else, and I was to wear them during sports (which I was involved in a few) and it seemed to be helping with some support when running..

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When I hit 10, my foot started to hurt, I was in constant pain from it, and after many X-rays they couldn’t find the cause so they just assumed it was an issue with the growth plate on the side of my foot (they thought possibly a stress fracture) and put me in a cast for 6 weeks over summer… Apart from keeping my foot still it didn’t seem to help much, but docs know best and I started my new school with a leg cast on.

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I started to get pains in my wrists and thumb, and the injury I received when I was 3 (tip of my finger was chopped off in a door) started hurting a lot .. I went to physio to train me how to use my little finger again as it was cut off at the joint, and after months of physio work on my umb they decided to put me in a cast for the same reason they put my foot in a cast, and then I was known at school by one of the teachers as ‘the one with the arm’.

I kept up my sports as best as I could, I loved playing my soccer/hockey/netball and it just got to the stage that I would roll over my ankle, suck it up, and keep going, but then my knees started playing up, and that was making me go a little slower than usual..

I had a ton of physio done on my knees for 2 years, and went to specialists about that after the physio work wasn’t doing anything, they found that my knee caps point in the wrong direction, and therefore can become rather inflamed and have lots of swelling underneath, I was told if this happens to take it easy and ice ice ice.

I don’t know if these are related at all, but I stopped growing when I was 10- I was a very tall 10 year old, but I have been 5ft since I was 10… Also the hereditary genes in me gave me gall stones and I had to have my gall bladder removed after many painful attacks. Many doctors were confused by it as usually it happens in 40+ year olds. I got bad tummy aches after this, but they did seem to be semi mood/emotion based so I was diagnosed with IBS.

My teenage life was rebellious to say the least, I think most people didn’t believe I was in pain, I was semi addicted to taking pills, and I just learnt to shut my mouth as it seemed no one believed me when I said I was tired and sore, so that became a way of life.

I had a long relationship that I gained a ton of weight in and got glandular fever when I was loosing the weight.. From then on in I just put my tiredness down to glandular fever, as I know when you’re stressed it can rear its head again.. And from then on in I’d have cramp in my legs that would stop me walking for days and accidents like falling down stairs that would leave me bruised and battered.. During this time I fell up some stationary escalators and dislocated both my shoulders.. From watching a ton of medical program’s over the years(I loved watching them because I had learnt so much about my body over the years from all the issues) I rammed my arms  into a wall and they both seemed to pop back, I had a little bit of a dead arm but didn’t think it would be an issue as I had no pain after it popped back in.

I broke up with the ex when i was 20, moved city, started dating and moved city again.. I put my tiredness down to everything that was going on and forced myself to do ‘normal’ activities that everyone else my age were doing, despite the fact that I was super tired all the time, and after a 30 min work out at the gym I’d be exhausted and achy for the rest of the day- I tried not to let this show to my bf(now hubby) as I just assumed everyone else felt the same as me. We enjoyed breakfasts out, but was quick to go home from my IBS, and then we’d go for a walk for no longer than 2 hours because my knees and feet would just throbbing from pain(and the occasional twisted ankle).

We quickly got engaged, and we’re married.. I was tired the entire time and spent most of our honeymoon either sleeping or forcing myself to do outrageous things, once we were back home everything had settled down for the first time in a couple years, so I could finally sit back and reassess myself.. I had pretty bad IBS so much that it almost became routine in my day what I would eat/ do and I knew all the toilets in town. My whole diaphragm would also become completely inflamed that I could barely move and had to take days off work, and nothing would help it… I was at the docs every week asking for help.. My shoulders were popping out once every 2-3 months but I wasn’t too worried about those as the docs told me they wouldn’t do anything unless they hurt, so the crunching remained.. And they just did the generic ‘loose weight, eat better, excercise’ as nothing was showing in the bloods as to what was going on with me.. This angered me massively as I was eating extremely healthy, walking for an hour+ a day, and even though my weight was up there, everything I was doing for it wasn’t changing it, I was fit but just a little overweight.

The doctors visits continued, and nothing changed.. Some comments were made that maybe I’d like to go see a counsellor or a physcologist to discuss what’s happening with me, as they couldn’t see why it was going on. My work was getting rather annoyed at me, which was hard as I’m a loyal worker so I had to put up with that guilt, which in turn made my IBS worse.. And then the recession hit, hubby lost his job and the stress levels increased for everyone.. At the same time I started to get anxiety and my depression increased from not being understood and being in pain so much.

Hubby made a rash decision and booked a one way ticket overseas to find work, I followed a couple weeks afterwards to support him, and hopefully finally have a break from working and focus on why I was feeling so crap.. Unfortunately after he was made redundant once I got a job so I could help out, but luckily hubby got one the same week and we found our own place and was finally settled somewhere with our new surprise… We were pregnant!

First time parents, in a new country without support- I went to my appointments after horrible morning sickness (which continued until they day I had bub I must say) and used public transport everywhere I could, and walked everywhere else(as we didn’t know how to drive).  Most days I was probably walking 4-6 km but from what everyone told me that’s what pregnant ladies should do.. The pain in my back increased and my hips and pelvis seemed to be aching every time I sat down.. And this was only at 15 weeks preg! I tried not to complain about it as I thought every other pregnant woman was the same.. But with each visit they kept telling me that my stomach muscles separation was a lot greater than the normal, and that would explain the increased pain, which was a massive relief as I could actually let myself be in pain, kind of, anyways… I was offered the gurdle, tubie grip for my stomach, and offered crutches which I kept declining as I refused to admit I was that bad.. After a few more weeks I was begging for the crutches as I couldn’t even walk from the couch to the toilet without pain.. I left work and looked after myself at home.. I only went out for appointments and it took me 5 minutes to make the 20 steps from the couch to the toilet.. Times were hard!

I also got very painful hands during the pregnancy, it took hours in the morning before I could move them with feeling, and I found it hard to use utensils –  I have been told that that was carpel tunnel and it would go away after I had bubs .

After a rough day of being kept for monitoring at the hosp, I went home and just wanted food as I hadn’t eaten all day.. I opened my mouth to ask hubby to get me something and heard/felt a massive crack, hubby even heard it.. It was followed by a second crack(i just assumed it was my hips being stupid) and made a slight move and realised my waters had broken- 38 weeks.. I went into the hosp after crying to mum on the phone about how I was so sorry she wasn’t there for it (she was due to arrive 39 weeks) we found a taxi and went through peek hour traffic to the hosp.. Luckily it only took 20 mins, and the second I stood up out of the taxi the contractions hit..they did not stop for 2 hours until bub was out(3rd degree tear and the gas seemed to do nothing for me). I was shaking for 2 days afterward from shock..

After bub was born, with the sleepless nights and weird positions my shoulders kept popping out more and more, one was every month or two, and the other one was once every couple of weeks.. Because there wasn’t much pain afterward I didn’t get them seen too, and my trust in the health care system and me thinking no one would believe me I just didn’t make the effort to see anyone.

The tear seemed to take ages to repair, and after my 6 month post birth review they said that they couldn’t understand why I was in pain where my tear was(as it looked okay), and didn’t know why my hands hadn’t gone back to normal and suggested I see a physcologist..Talk about an all time low!

I was tired all the time, but it didn’t feel like a normal tired, I wanted to see someone about it but was just thinking they’d say’ you’re a mum of course you’re tired’… I wasn’t even doing the night shift with bub and I was still waking up as tired as I felt when I went to bed.

Felt like I was suffering in silence as I felt I couldn’t talk to anyone about.. I was forcing myself to go out for walks every couple of days once the weather was walkable, but I just felt like crying all the time because I just never felt good. I was trying to be a fun mum and go out and do everything, and seem like a cool wife to hubby and trying to be spontaneous with things I did even though I was exhausted and dizzy.

After international flights and visits to everyone we came back to the country with no support and then my shoulder popped really bad.. I had to go see a doc this time as the pain never went away.. I was referred to a specialist for 6 months time.. The pain never dropped below a 4 and my shoulder was popping 1-2 times a week now.. I could only use one arm to lift my son up and tried not to use my left arm out of fear of it popping again..

This appointment came and went two weeks ago… And it was the best appointment I’ve ever had.. they sat me down, discussed everything I had going on.. I didn’t include some things because I didn’t think it was relevant to my shoulder popping, and then I was asked a barrage of questions, that seemed like she was reading my medical history as to everything that I had going on and casually said ‘ o yup, you’ve got benign hypermobility syndrome.. Look it up when you get home you’ll be surprised’ .

I got home and told hubby about it and told my mum, and after reading more and more it finally explained everything, and that It wasn’t all in my head!

Basically that is my story so far.. I feel so much happier waking up in the mornings knowing it’s okay if I’m tired, and that it’s okay that I hurt after a walk.. I’d like to keep writing on here about what I find, as the personal accounts I’ve read so far have made me feel so much better, so I hope this can make someone out there feel supported with their diagnoses.