The day my achilles overtook my pancreas as the most hated body part

Okie dokie artichoke so here goes the ‘ankle story’

2018 January
Started getting pain in my left ankle, from my heel, up into my calf, I had a scan and it showed a bone spur and some achilles tendinitis. No big deal right? So started conservative treatments, orthotic adjustments, tens machines, stretches, manipulations, dry needling, ultrasound therapy, all to no avail.

2018 March
Am referred on to an orthopaedic surgeon for his opinion on what the next steps may be. He looks at my history and says an MRI would be the next step to see the full extent of what’s going on. Comes back with insertional achilles tendinosis and paratenon thickening.
The decision is made that an ostectomy and debridement surgery is the next step.

2018 May
Surgery is performed. I stay overnight in hospital. While attempting a shower the following day, I lose my balance and put my weight on the freshly surgeried (yes I know it’s not a word) foot. The pain is something I had never experienced before, despite this, I am sent home, in my half leg backslab, no weightbearing, to return to the surgeon in 3 weeks time.
2018 June
Surgeon is happy with the incisions and transfers me to a moonboot, at a 30° angle to take the pressure off my achilles. I can now weightbear. In 2 weeks time, I go down to 15° angle in my boot. I am then over the next month to get back to 0°.

2018 July
I am now 10 weeks post op, and still in pain with weightbearing and experiencing warmth over the ankle. Surgeon feels this is inflammation and that it is still healing, that it may take more time due to my diabetes. He suggests I wear heel wedges to take pressure off the achilles and return in 6 weeks.

2018 October
5 months post op, I was doing okay until I had a bout of localised swelling and redness, suspected mild cellulitis, resulting in IV antibiotics. Here is when the “considerable swelling” (surgeons notes) comes into play. I was no longer able to wear my normal shoes due to the swelling. We again try conservative therapies, compression, elevation, ice and tens therapy.

2018 December
Repeat MRI is done due to considerable unrelenting swelling. This leads to the decision to redo the surgery and debride the inflammed tendon.

2019 January
Undergo my 2nd surgery the day before Australia day. Left ankle debridement.

2019 February
1st surgical review post op. Swelling is considerably lessened and my heel is flatter. Intraoperatively, I am told, there was significant tendon degeneration and gross swelling towards the insertion of the achilles. Into the boot I go, to see him again in a month’s time.

2019 March
Have an unexpected flare of my wound, landing me on antibiotics. At this time, the base of my scar is breaking down slightly. He advises to stay in the boot as is for another week and see him again in 2.

2019 April
As with the 1st surgery, once I made the transition back to shoes, the ankle blew up and the swelling would not subside. To avoid the chance there is something he has overlooked,  he sends me to a colleague for a second opinion.

2019 May
I see this 2nd surgeon and he agrees that the achilles appears to have lengthened,  giving me little to no power in my calf muscle. I have pain with weightbearing and day to day functioning. The decision is made that the next reasonable step is to again return to surgery to have an FHL tendon transfer. This is where one of the tendons that runs to the big toe is used to support the achilles. I am told I will never be able to be a ballerina, devastated 藍
Thinking that my big toe isn’t really a big deal, and that 80% function in it wouldn’t make any noticeable difference,  I agree and surgery is booked.
We do the surgery and go thru the now painfully familiar wheelchair, moonboot, shoe routine over the next few months.

2019 August
Swelling and pain are still very present. Surgeon decides to try immobilising my ankle and have a non weightbearing period of 4 weeks. This turns into 6 weeks in a cast, before again transitioning to my moonboot.

2019 September
Things are looking promising, the surgeon and I are tentatively optimistic that a slower approach to rehab will have a different outcome this time.

2019 October
Back to the surgeon, with gross swelling and heel pain, again. I am sent to a specialised physio for gait retraining and oedema management.

2020 January
Back to the surgeon for a review and inform him of my current pain status and that I am now also getting pain over the outside of my ankle.

2020 May
Back for my 4th surgery, this time on my peroneal tendon in my left ankle. Due to my altered gait (due to an essentially useless big toe) I  now putting pressure on that tendon when walking, and causing microtears.
My recovery from this surgery was extremely difficult, getting extreme itching under my cast, we removed the backslab to gently wash my leg before rewrapping it. We did this and found bubbles over my entire leg, itchy, disgusting bubbles and a fairly disgusting wound. I call the surgeon, he sees it and tells me to go home, pack a bag and report to the hospital for admission for cellulitis, and would also turn out to have staph, that I would need a few days of IV antibiotics. I am in hospital on antibiotics and pain meds for 8 long days. This obviously complicates my recovery quite a bit, but eventually I am back on the same train of wheelchair, boot, shoes.

May 2022
So the past 2 years I have been in and out of my moonboot, I have been diagnosed with lymphadema in my left leg and fitted for a custom compression sock. This made my pain worse and so that was discontinued, i was then fit for an achilles brace in an attempt to support my ankle and provide some compression. This is also unsuccessful. The past 2 years have been physuos, podiatrists, myotherapists all trying to help retrain me to walk properly. Due to little to no control of my big toe, to compensate I was walking on the outside of my foot. Today I am still walking the path of gait retraining, but am now dealing with an irritated knuckle joint in the middle of my foot underneath which makes it feel like I’m constantly walking on a marble. So while I retrain, I am also receiving treatment to minimise the bump under my foot. Years of being in and out of a wheelchair, and being in the boot for long periods of time at varying degrees has taken its toll on my back and hips which are generally inflammed and irritated all the time now.

I am getting there, I am able to do heel raises now and am working with my myotherapist making slow and measured progress. I still have not much calf engagement and am in constant pain but am seeing small improvements which feels like winning the lottery after the last 4 years.

Share this:

So, verdict is chronic inflammation in the right ankle which has been missed/not caught because of the focus on the left, despite my repeated umm hello it actually really hurts. Only ever met with its just compensation from the other side. I digress, so chronic inflammation that is in an acute phase currently as something has pissed it off, or diplomatically, aggravated it. Anyway, I’m in for a month of physio and intervention and if that doesn’t work then ultrasound therapy, and we will work our way down the list from there, exactly as we did almost 4 years ago to the day when I first saw my orthopaedic surgeon for the left heel. Blah blah anyway so I’m currently sitting in hospital getting an iron infusion, fun times!

Range of movement differences

Not the right one!

So anyone that has read anything I’ve written or known me at all in the past 4 years, knows my left foot/ankle is a complete right off and any views of it are met with ‘wow what the hell’. So today, I go to get an ultrasound on the right one, literally the right one. There is a large lump forming on the back of the heel and the pain is almost overtaking the left foot, which is a feat in itself. I don’t want to get ahead of myself but far out if something is wrong with this one, I already can’t use crutches to take the pressure off the right because the left won’t cope. Arghhhhhh so annoying. End of whinge.

How?

How do you go on about your day when a friend of such kindness, compassion, loyalty and a million other things, is no longer around. It’s hard to reconcile living in a world where she is no longer. She gave so much but didn’t realise the deep and enduring love everyone she met had for her. Be it a one time meeting or years of friendship, your life is changed for the better because of this one person. I just feel so lost, numb, just not sure what to do, doesn’t feel real, i find myself just sitting there blankly just thinking and not able to concentrate for very long. Waking up in the morning with all these hopes of what you’ll get done today but then find yourself still in bed well past lunch. I don’t want to read all these articles and posts but feel i should in case there is a disgusting troll who feels it appropriate to write something heartless. I want to protect you even though you are gone because i missed that opportunity while you were here. You would be so proud of how the community has come together to share photos of you, memories shared, and how you touched their lives. RIP amazing lady xx.

2022

Okay, where to start… i feel as if I am losing friends by being open about my health and wellbeing on Facebook so my solution is to reignite my blog and then whoever wants to read my ‘trials and tribulations’ (haha) can, or they can ignore it. This way it still helps me by writing it and getting it out there, and really, that’s what is most important to me. I get attached to people and put a lot of my worth in the relationships i have with them and inevitably they leave, its been my experience with friendships 80% of the time. There are a few that have hung around and those people, whether they take it in when i say thank you, THANK YOU. You restore my faith in people by sticking by your word. I understand the last 2 years have been difficult for everyone in varying degrees and in varied ways, every experience unique. However, while some chose this opportunity to reach out to friends and check in or engage in video calls and the like, others use it as an excuse to lose touch, create distance and eventually disappear. These past 2 years i believe have really shown people for who they are, their true colours, and some people have come out looking mighty ugly. Anyone who knows me, knows i put a lot of myself into the kids in my family, spending time with them, lying on the floor doing puzzles or reading 500 books every day. During lockdown, that was gone, i read them books on video calls, but theyre not here, sitting on my lap, looking up at me as i attempt the different character voices in Peppa pig! I missed that so so much, more than i could ever accurately put into words, 10 years ago, maybe, but as I’ve had fibro and chronic fatigue for longer and longer i actually feel myself getting dumber. I don’t have the eloquent way of the word i feel i used to, my brain doesn’t work at the same speed or capacity that it used to reach. Being aware of this, is like the cruellest joke of all. People see photos of me and the kids or me and my animals and just see a normal person, they don’t see the rest breaks I’ve had to take because my ankle is killing me, or because the fatigue is so overwhelming I’m getting a migraine, they don’t see the tablets i had to take in order to function for the day without a 2-3 hour nap in the middle of the day, they don’t see the migraine i get at the end of the day as a consequence of said tablets because they trick my body into thinking it has energy and as the day wears on and the tablets wear off, it goes into shock and i crash spectacularly. That is why i don’t just ‘take those pills everyday’. Anyway, I’m just cranky because its hot and i have a migraine, again. I suffered constant migraines and hand tremors after my AstraZeneca vaxxes, they finally stopped 2 months ago, then I had the booster and its started all over again, I am hoping with everything i have that it lasts half the time because it’s half the dose. That’s about all of my rant capacity for today.

💪🖤

#grumpyandproud

Share this:

So tonight I want to cry. Today was my nephews 3rd birthday party, I felt horrid majority of the day, even had to remove myself and have some time out. Did some deep breathing, laid down in his Thomas the tank engine toddler bed (lol) and tried to feel better. I still felt shit but tried to power through. Get home and have something to eat, and set myself up in bed, I take my boot off, intending to moisturize my foot, anyone whose been in a moonboot knows you need some time out and definitely frequent moisturizing. I look down and the side of my foot is swollen, not how it has been in past weeks but very swollen and very hard. I immediately freaked out, everything that’s a tiny bit out of character freaks me out, could this surgery have failed? What if the same thing is happening again? The past 2 years has been agonizing, emotionally and physically with my foot. I’ve had enough! I want the boot off, I want to be able to walk again, and normally, without pain. When do I get a freaking break? I feel like I’m becoming a horrible and impatient person cos when someone whinges about something I deem insignificant, all I can think is let’s swap bodies and see how you feel then. I hate that I feel that way but the pain and struggle is making me bitter.

Share this:

Logging in and seeing my last blog about my surgery kind of makes me laugh. Back then I thought it was like the world was ending, that it couldn’t get any worse. Of course, it did. Feels like my life is just a never ending series of ridiculous events and occurrences. So, since last may, my first ankle surgery, I started rehab, did everything by the book, but my ankle stayed swollen, never going down. A few months later I was admitted to hospital with cellulitis, among other things, I see my surgeon and he thinks antibiotics have nipped it in the bud, not really sure what was going on, but thinking the problem was solved. Wouldn’t that have just been too easy!? Swelling still present, and growing as the days pass, as is the pain. The scar looks great which is confusing everyone because of the state of my ankle. When the surgeon examines it, again and again, he’s stumped as the swelling seems to appear over 2 separate sites on my ankle, and the pain is over the insertion site and other areas. We tried everything, Troy (surgeon) wants to throw everything at it and hope something works, over the next few months we try lymphatic massage, body flow, compression, 2 more stints in the moonboot, 3 different physios, each managing to exacerbate my chronic fatigue by how they managed my ankle. It’s late November when Troy decides that no success so far means an MRI, ASAP. 2 days later I have my MRI and 2 days after that I see him again. It’s this appointment that forces me to tears as Troy says our only viable option left is repeat surgery. I burst into tears, terrified of going through that again, as Troy explains a little further to dad. He continually tells me he’s sorry this is happening and that he’s never seen this before, and never had to do a revision surgery. His honesty is refreshing and I sense his frustration at not having answers, for me, or himself. So we leave that appointment with surgery happening as soon as possible, just need to wait for a date. Troy tells me to wear the boot to get me through the holiday period as in the past it helped my pain. By the first week of January I’d had enough, nothing was helping anymore and I needed help. I emailed his rooms, they got me in straight away and I was given a tentative date of January 30th. I asked for sooner, and I was put on a cancellation list. Days and days waiting and hoping, and 19th January I get a call to say the 25th is available, I jump on it and say yes. I get off the phone and burst into tears at the reality of it happening, and in just a handful of days.

The day comes, admission time is 12.30pm. I’m awake at 5.30am. I spend the few hours trying to distract myself with tv, and games. I also take a long, luxurious bath, knowing this will be my last for quite some time. 11.45am comes and we are in the car, I had packed and repacked my bag about 4 times. I listened to my ipod the whole way there, trying not to think about it but only being able to think of a long white hallway you’re wheeled down to theatre. I limp to the elevator, to the 2nd floor and my admission begins. Within half an hour I’m taken in to change into the hideous hospital gown and dressing gown (note that this was the 43 degree day, wasn’t keen on a dressing gown) they make you put the bright red socks on and layer upon layer of hospital crap which makes you blindingly aware it’s 43 degrees. You go through telling about 3 nurses your medical history and your medicines, then repeat it to the anesthetist, assistant anesthetist, surgical assistant and what feels like possibly every staff member from the entire hospital. I’m lying there in the bed waiting to be taken in and it just feels like time has stopped and they’re never coming. Then the assistant anesthetist appears and it’s lights, cameras, action and the tears start again. Wheeled into pre theatre where the drip is in my hand and I’m left alone. Assistant anesthetist comes back in to me balling my eyes out, leans down and says, “don’t worry, we’ve done this before” and smiles at me. Such a random, pointless, obvious thing to say, but it helped, it reassured me and calmed me down. Then Troy comes in, the big guns have arrived. Not so reassuringly, he comes in with “what’s wrong? Nervous or is something else going on?” Haha! Clueless! Just going in to a surgery I had less than a year ago that didn’t work or something went awry, but nah not nervous at all! Lol. Then in his misguided attempt at calming me he laughs while he writes NO in purple marker on my right leg and YES on my left. He decides now was all good time to make small talk about my tattoos, such a random, random guy, trying his best, but cringe worthy awkwardness lol.

I’m wheeled in, given a relaxant, and Troy decides now is a good time to ask me where I had my MRI, lol I don’t think I’ve ever felt more brain fog, probably shouldve asked pre relaxant, not post. Then I’m out.

I wake up to the familiar event of a nurse saying Brooke open your eyes, we’re checking your vitals, and all that fun stuff. It’s here I realise I’ve been in recovery for quite awhile, and they’re having a slight panic because my heart rate is pushing 140+. They tell me this and I laugh, knowing I always have a high heart rate, so it’s not that alarming to be 130’s after I’ve just had what is later revealed to be quite extensive surgery. I tell them it’s not a big deal, that I have have a fairly high resting heart rate usually, but hospital protocol and all, not allowed back on the ward til it’s under 120. This takes forever and I’m constantly reassuring the nurses that I’m actually quite fine. They call the higher ups and get the okay to take me to the ward on a heart rate of 125. I get to my heavenly private room and it’s finally over, I can finally relax a bit. It’s here that the hourly checks begin, can you wriggle your toes, can you feel this, and the checking of the temp of my toes. It feels like every five minutes the nurses are whipping back the blankets and doing this check. I ask for a chair and I’m wheeled to the bathroom where a nurse props my leg on a bin to keep it elevated. It’s here that I realise Troy had to cut behind my knee too. He told me this could be a possibility, but that he really didn’t know what he was facing going in so couldn’t guarantee how I would come out.

This became routine, every few hours wheeling into the bathroom, so at about 1am, the nurse wheels me into the bathroom and tells me to push the buzzer and she’ll come back and help me to bed. I decide nah, this isn’t my first rodeo, I can do this, and use my good foot to scoot back to bed. Half an hour passes, said nurse returns, and I’m lightheartedly scolded for moving on my own. Some time later she sees me scoot my way to the door, open it, and back the chair in, seamlessly I might add! She scoffs, says she’s impressed and from then on I’m left to my own devices, score!

Clearly, didn’t get much sleep that night, despite a delightfully quiet, dark, private hospital room. Eventually Troy appears, telling me the tendon was 3-4 times the size it’s meant to be and that the likely causes were either my diabetes, which he said was less likely because of my good control, or, the most likely cause was that I had a violent reaction to the internal sutures used in my first surgery. He says he’s never had any adverse reactions to these particular sutures, and was quite surprised. So bone was shaved, bursa was removed, and tendon was scraped, cut, lengthened and repaired.

From about 8 am onwards the pain was agonizing, and nothing touched it, endone, or a whole manner of other schedule 8 drugs. It continued this way for about 4 days. Really not fun. Then the pain seemed to turn the corner, and changes. Much more bearable. Then I find out Troy is away and my post op appointment isn’t until 24 days after surgery, instead of 2 weeks like it should be. This means another 10 days in the half cast instead of the boot. Yeah, nah. Not having a bar of that nonsense! Called Troys orthotist rooms and manage to get my boot fitted 13 days post op. It’s here I get my first proper look at the cut, way bigger than my first surgery, and not as clean looking, not desirable viewing.

So that was yesterday. The pain has been super not fun. I seem to have had allergic reactions to the tapes used on both my knee and ankle wounds. So not only is the surrounding skin bumpy, it’s also unimaginably itchy and sore. I’ve now got to put gauze over the wound and crepe bandage around is because I’m reacting to everything else.

Super long winded play by play, summary is… OUCH times a million. 😕 I’m only 2 weeks in and it’s been an emotional, physical nightmare ride. Atleast my 2 weeks in the wheelchair are over but the moonboot brings upon its own long list of frustrating, painful dilemmas and struggles. You deserve a gold medal of you’ve made it this far and read all this.

It’s been a long 2 weeks, I’ve cried, many, many times, wanted the pain to end, wanted a break and been in agony. I’m sorry for anyone whose waiting for the but I learned this or I got this out of this experience. I’m not there yet, I’m still at the this is shit, life sucks stage, so stay with me.

Much love if you read all this 💙💚💛💜

Share this:

4am and I still haven’t slept. 3 weeks ago I had surgery, Achilles tendon repair,  bone spur removal, bursa removal and a general clean up.

I’ve been in a back slab/half plaster from my toes to my knee ever since. I had a pretty awful fall in the hospital the morning after surgery. Still getting used to the cast and crutches I lost my balance and put all my weight into my freshly mangled foot. I can’t remember a time I’ve been in more pain than at that moment and for hours afterwards. This was the first of many falls I’ve had since this procedure. I think I’m up to 5 falls now. Luckily I haven’t really injured myself in any of them besides bruising.

I don’t feel my surgeon properly prepared me for the recovery from this surgery. All I was really told was no weight bearing on that side for 2 weeks. He never came to see me after surgery, never really gave me post op instructions and forgot to write the prescription for antibiotics on my chart so I was sent home with no antis.  I asked before we left about them but it took them days to fax it to my chemist. So in those crucial first few days I had nothing. You might think yeah, big deal, but being a diabetic , along with my myriad of other issues, I’m extremely susceptible to infection. My post op visit wasn’t made for the usual 2 week mark, but the 3 week mark so I am still waiting to get my stitches removed and for further information,  whether I go into a full plaster now or a moon boot, Tuesday will tell.

I feel so overwhelmingly disheartened , I feel like I can’t even trust my body to get out of my wheelchair without falling or stumbling. I’m 26, I’m too young to not be able to trust my own feet. Doorways make me incredibly anxious and anyone standing around to help just adds to my nerves and anxiety so of course I snap. It’s hard to accurately describe not trusting your own body to carry you upright , I can’t even properly put it into words besides I hate it. I hate that when I see my cousins or nephew they want me to play and go inside, outside, inside again, and I just can’t. My 2 yr old nephew even grabs my wheelchair and says chookey in chair, outside. As adorable as it is, it kinda breaks my heart because I’ve always been the get on the floor and play type of aunty.  I know it’s not forever, and they just have to accept it, but they’re kids, they shouldn’t have to. It’s hard when you’re in the middle of it to see it will help in the long run, and being told just that doesn’t help either. I am well and truly feeling sore and sorry for myself. I struggle to get to the kitchen and back to my room with a drink, and by the time I do get back, it’s a big sigh of oh finally, have to take a breather and then manouvre myself into my bed. Everything is 10 times harder and more tiring, and considering I already have chronic fatigue,  that’s saying a lot.

Just getting into the toilet is working my way around the corner of the hallway, parking and locking the wheelchair at the door,  lifting myself out of the chair, spinning around and taking 2 big hops backwards so I can then close the door so I can then hang onto the doorknob for dear life to lower myself. Shower is much the same, adding in a lovely purple garbage bag over my leg. You don’t appreciate what you can do until it’s impaired somehow or taken away. My right leg and my shoulders hate me at this point, as they’re working overtime. Going anywhere , you get stared at and looks of sympathy,  making you just want to melt away and be normal again. I hate everything about it, my foot and leg is either freezing or hot, and before people get worried,  I’ve had it checked,  it’s not infected. It weighs a tonne,  feel like I need a crane to lift it sometimes. If I sleep on my right side, I have to tuck my right foot under my left knee because otherwise it’s on an uncomfortable angle. If I sleep on my left side, I can’t have the right leg resting on the left because the hard edge of the plaster digs into my leg. Sleep on my back and the doona on top of my foot hurts. On my stomach isn’t too bad, but again have to tuck my other foot underneath to get it comfortable. Nightmare! It just seems to be a never ending,  unwinnable battle for comfort. To make things worse, the past few nights I’ve started getting restless legs again, normally I’d just get up and pace for awhile. Obviously I can’t do that so I am at a bit of a loss as to what to do. I got up and into my chair and rolled back and forth using my good leg for a good 20 minutes, back to bed and it was back again within 15 minutes. So it’s approaching 5 am and I still haven’t slept a wink. I’m pretty used to crappy sleep,  but usually I can get a few minutes here and there.

And my diabetes is crap at the moment, I’m trying but I’m just losing momentum  I’m doing probably 4 or 5 readings a day which is on the lower side for me. They are almost always in the teens, feels like a never ending battle to try and get them down, one day it will come down,  the next it won’t budge or it’ll even go up. I’m so exhausted by it, I have my endo appt next week and I know he won’t be a fan of my hba1c. It’ll probably be mid 8’s I know to some that’s nothing but we’re all different , and to me that’s far too high and when I’m told that inevitably high number I’ll be disappointed in myself. It’s not that I’m not putting effort in, it’s just that so many other aspects of my health are screaming for attention that the diabetes is on the back foot. I know it’s not great, and I will get back on track,  but for the time being, I’m doing the best I can.

I really hate losing my independence and just basically being an invalid, I hate having to ask for or receive help with things I could easily do myself a month ago .

 

I think that’s about it . Enough whinging from me 😉☺

Share this:

Hello again! The weather is cold, the heater is on, the electric blanket is on and I’m in bed. Perfect recipe for a blog to be written. These blogs tend to be a diary of my health nonsense, and this blog will be no different. I thought things might settle down after I got a diagnosis but they haven’t really. The diagnosis of fibromyalgia and chronic fatigue only brought up more questions. What do i do now? How do i help myself? Is my life going to be this crap from now onwards? Will i recover? This is only scratching the surface, i don’t want to bore you with the inner workings of my mind. I have heard other sufferers ask this question, and i found myself asking it too, are my current issues fibro, or should i be going to the doctors? It complicates everything, not being sure if it’s just another symptom or maybe something on top of that. 

I keep getting spontaneously sick every few weeks, the docs say it’s abdominal migraines and put me on meds, but to go on those meds i had to stop my beta blockers for my heart. The new meds are meant to lower my heart rate also but they are nowhere near as effective as the beta blockers. Just sitting down my resting heart rate is 100-110, i get up and walk a few metres and it’s pushing 130, sometimes more. It really isn’t helping the fatigue, everything is exhausting, i find myself living on the couch or constantly wondering where i can sit down because I’m so tired. I try to go shopping but end up exhausted and feeling sick. 

I went to the doctors with sinus pain and congestion, clearly my sinus’ acting up yet again. Yet again they tried antibiotics and nasal sprays with steroids, yet again, it didn’t help. The next step is going to an ENT to go under and get them surgically drained. I just want it done at this point, it’s been about a year of congestion and yuckiness. I want to tick this off the list and have it be done with! 

I noticed that the lymphnodes under my arms were swollen, i kept an eye on it and hoped it would go away. It didn’t, and camp was only days away so i was talked into seeing a doctor about it. She sent me for an ultrasound, the technician said she couldn’t see anything too nasty but to consult my doctor. I get the results on friday.

When i last saw my rheumatologist, quite awhile ago now, he saw an abnormality on my spinal mri, right where I hurt my back in a fall, and subsequently had 2 surgeries. He ordered me to have an ultrasound to further investigate. I put it in a draw and tried to ignore it because i didn’t want to face the possibility of having yet another surgery. I was speaking to a friend and she told me to bite the bullet and just go and get it done. I booked in and reluctantly went and got it done. The technician barely started the scan before she got up and said she was getting a colleague. I’m thinking oh here we go, what is it this time. She came back and explained to me what I had was rare and her colleague had recently been studying this exact lesion. I asked her what the issue was and she explained that the connections between the muscles and tissues and such are damaged and no longer connected so fluid is collecting in between them. She said it was quite bad and will quite likely needed to be operated on because it has been such a long standing issue and injury. I thanked her for her help and went to the car. I sat there for a minute just thinking oh not again. I could not and still cannot believe this nightmare still isn’t over. I fell 5 years ago, had my first surgery 3 years ago and my 2nd surgery last year. And now it looks likely to be surgery #3 this year. I feel like i could scream with sheer frustration. 

As much as i would never ever wish my health on anyone, why does it always happen to me, why do i always get everything? It’s exhausting, in every single way imaginable. 

I had my camp this past weekend. I think it was possibly the most challenging thing I’ve ever done. I stopped halway to anglesea to get some lunch and as soon as i got back in the car i started to feel sick. I got to camp and didnt feel any better. I felt sick to my stomach, i wasn’t sure if i was going to throw up or pass out or what. I pushed through and put on a brave face for my camp families, and retired to bed at 9.30pm. My pump alarmed with errors with my sensor all night until i turned it off at 5am. I woke up feeling better but still tired. I hit the wall again around 5pm and was exhausted, i managed to make it through dinner and disco and was in bed by 9.45pm. Come sunday all i could think was get through the morning, drive home and you can sleep. An amazing camp parent carried most of the boxes down to the trailer for me which helped immensely! I managed to drive home without stops in 2 hours and 5 minutes. I stumbled out of the car just absolutely at my limit. I had a few cuddles with my nephew and retreated to the couch. It was so hard because the camp was hugely successful, the parents were great, the kids were great and the whole program went very well, but everything is clouded by how i felt which is so incredibly disappointing for me. I felt so disappointed in myself and just let down by my own shortcomings. It is so frustrating. I’m also proud of myself for pushing through and making it a great weekend for my kids, hopefully making them feel not so alone in this horrible disease.

I’m horrified to admit but my diabetes has taken a back step at the moment. I feel so horribly drained from everything else that I’m finding it difficult to keep on top of that too. I’m only doing 1-4 tests a day, I’ve tried putting sensors on to ease the burden but have had nothing but trouble with them which compounded the stress and did the complete opposite to what i was hoping. 

I’ve been visiting a myotherapist weekly and she is amazing, she knows so much about fibromyalgia and chronic fatigue and what we can try. Remedial massage does not work for me at all, it only causes me more pain at the time and for a week afterwards, with no relief. Next we tried dry needling and that has helped heaps. The pain in my shoulder was getting unbearable, and the needling has put an end to the harshness of the pain. It is still there but not as bad. 

Ahh i could crap on all night but i think there’s been enough verbal diarrhea for one night haha!
Much love, thanks for reading xx.

My relay

So here goes another blog. As with all the others, i don’t go back and read over it and edit it. I don’t write it thinking about how people will react or whether they like it or not. I literally just write whatever comes into my mind, whatever i feel like conveying. No more thought goes into it. Its just unedited, raw, and me. 

So, this weekend i did relay for life. For those who dont know, relay is a 24hr event where you get a team and a site where you call home for the next day and you walk laps and fundraise for cancer council. It is an amazing event to be a part of, the atmosphere is so open and friendly and it truly feels like one big family of 4,000 people. Some people walk through the night, some can only manage 1 lap. That’s the general explaination of relay, this will be my personal experience of relay, every little bit.

Friday at 3.30pm, i get ready to leave the house and head to relay, half way there I realise i am hypoing and have to stop. I pull into hungry jacks and get a chicken burger and straight drink and devour both in the hopes of feeling better. 10 minutes later im okay again and feel better after eating something. It takes me about 30 minutes to make the 10 minute trip from my house to akoonah park where the relay is held. Traffic was horrendous and unrelenting. 4.25pm i finally arrive at akoonah park, and am quite releived to see there is a park directly behind our campsite. Less walking unloading the crap you pack for one 24hr slot. I sat down for a few minutes before my friend text to say she was here but she wasn’t sure where to go. I started walking the lap to find her and low and behold walked the entire way to find her 200m from our camp in the other direction, if id only walked right not left! We got back to camp and before long once everything was unpacked and we settled in, it was time for the official opening ceremony at 5.45pm.  We walked over to the middle of the oval and there were speeches and typical stuff you would expect. There was also a brilliant poem from a 15 year old girl who had lost her best friend to cancer when they were 12. The way it was written was incredible for someone her age. After the survivors and carers it was then time to embark upon the official first lap. We had our banner and 4 of us walked proudly with it in our grasp. We did 2 laps with the banner before returning to camp. I already felt sick just from doing 2 laps and was told to sit down and rest which i did. I was worried leading up to the event and during how i would cope with my new medical restrictions. I was planning on trying to pace myself and not push too hard. I walked about 5 laps before the candelight ceremony. 4 of us set off for the oval, and i broke off to run to the bathroom before it started. I got back and the oval was pitch black, the only light coming from the stage, and a out 2,000 people standing there. I looked briefly but conceded there was no way i would be able to find the other 3 in the dark. I made my way to a small opening of grass and sat down to listen to the ceremony. It went for 45 minutes, maybe an hour. I was a bit sad to not be with my mum for the minute silence as at last years relay she was very emotional during this time. I sat there thinking about the friends who had lost husbands recently, and the grandparents i had lost before i was even born, the grandpa i had lost at the same time i was diagnosed with diabetes. And lastly my beloved grandma who battled skin cancers for her whole life and that i miss so much. It was actually nice sitting there by myself just thinking about how my life has been touched by cancer and being able to just relax and think without concerning myself with the people around me. As i went to get up i got a glaring reminder of why i struggle and now avoid sitting on the ground. My hips seized up and i walked very gingerly my first few steps rubbing my sides, willing the pain and stiffness to go away. Once that subsided, the shoulder pain kicked in, which i had been waiting for and was prepared for. Slowly walking back to camp i saw a friend standing in front of the memorial slideshow of loved ones who had passed. We stood there with an arm around each other for quite awhile before her mothering instincts kicked in and she ordered me back to camp to rest. I laughed to myself as i walked away because by joining the lionesses a few years ago, i feel like I’ve gained 3 grandmothers. In moments like those its really nice to still have that kind of figure around. I got back to camp and took some painkillers, before long i hear, she’s back here and phone lights are up in my face, it’s my mum and 2 friends who i couldn’t find at the ceremony, they were worried something had happened to me when i didn’t find them at the ceremony. I assured them i was okay, i was there and just sat by myself to listen to the stories and music. I got mum to stick 2 heat pads to my shoulders and went and did a lap with them. I came back to camp to rest and started getting a migraine, i couldn’t take any painkillers because i already had an hour earlier for the muscle pain. I drank lots of water and hoped it would go away. It didn’t. The music in the middle of the oval was so loud and it was really getting to me so at 10.30pm I resigned that i needed some rest. I couldn’t sleep on my stretcher bed because that gave no relief from the noise so went to my car but looked at the small space and knew it wasn’t for me. Mum offered her car, and as her seats laid flat it meant the space in the boot was nearly a double bed. I laid down a folded mattress, got my pillow and tried to get comfortable. I had towels hanging on the windows and a sunshade at the back to block the light and so people couldn’t see me. It was quite a cosy little space. I managed to get 2 hours sleep before waking at 2am having a hypo. I texted mum who was a few metres away outside the car and asked for food. I knew there would be no sleeping again after a hypo so got out of the car and rejoined the others sitting at camp. After some time i then went for another lap or 2. Mum then went to get some rest, and by 5am i was desperate for more sleep, i was uncomfortable and tired and cranky. Mum was in the car so i tried sleeping on the stretcher bed but couldn’t get comfortable and it was so cold i gave up and tried sleeping in my car. That lasted maybe 30 minutes before I gave up and got out. I felt horrid i was cold and tired and just felt crap. At 6am they had a bbq making egg and bacon rolls so took my jumper off to wake myself up and headed down to get some food. I then did another lap or 2 after breakfast, by this point people were starting to move a bit more and wake up from their broken sleep. It was still quite cold at this point and there were blankets and jumpers everywhere. I went back to camp and got mum to put dencorub on my shoulders which helped a bit. I did a few more laps, visiting the book man and buying a book for myself, and one for dad. It was starting to warm up by now, and I start to feel quite sick with the heat so i retreated back to camp where i was told to go home. I refused, and stayed. Dad came to visit and brought a plastic poster i had designed for our group to say thanks to everyone who supported us. It was a huge hit, our team captain loved it, we even had people visit our camp to see the ‘infamous’ sign. It was great to see it was so well received. I had decided by this time to not force myself to walk anymore laps and to just hang around camp and take photos. I set up my tripod and organised some group shots and some walking shots, i also took some of our camp, displays and goods. It hit around 1.30pm and was starting to get really hot and i had hit the wall, after 21 hours I took my shoes off and felt like the soles of my feet were covered in blisters. I wanted to stay til the end but knew my time had come. I packed up my bag and camera and such, said goodbye and headed home. I got home, brought in my phone, meter and food and crashed. Everything else got left in the car. I woke up at 7pm that night after a 3 and a half hour sleep, made and ate dinner, watched some tv, took all my tablets and went to bed feeling pretty sick. I wasn’t badly burnt but had some sun on my face and think i had a touch of sun stroke on top of the exhaustion and the muscles weighing down on me. It was in bed at 11pm that i realised I’d overdone it. I didn’t respect my medical limitations and now i was really paying for it. I woke up at 3am and had an icypole to try and help the heat, and fell asleep again. I was then awake again at 8am, i felt much better after getting some sleep and got up to have breakfast. I went back to bed to watch netflix and within half an hour i was asleep again. Awake at 12.30pm i get up to get a drink and some food, again im asleep by 2pm. I wake up at 5.30pm realising the full extent of my exhaustion, i sincerely hope that it won’t affect my sleep tonight but knowing me it probably will. I knew my health would put some restrictions on me and that i might be sore and tired afterwards but i didnt realise the full extent of it and what i was in for. Even as i write this i could easily sleep again as im writing this laying down, but im going to make a conscious effort to keep myself awake so i can sleep okay tonight. So, that was relay, as a team we walked 650 laps, equivalent to 585km. That’s a bloody decent effort if you ask me! It was a good 21 hours with some great people, inspiring people and i will definitely be back next year. 

I think that ought to do it, i dont think people want to hear anymore from me. So if you’re reading, thank you for taking the time.