The Last Two Years…..Can I get a refund on that?

Two years ago today, I was flat on my back in my bed thinking I would never walk again.   So began two years I’ll never get back.

I woke up and realised I couldn’t move either of my legs.  Like, at all.  Couldn’t lift them up, Couldn’t bend them, nothing.  I panicked.  My husband came up and of course he thought I was joking.  I wasn’t.  Now, it sounds like I’m exaggerating.  I assure you I am not.  I could not move my legs.

Anyway, I, stupidly told my husband that I would be OK, (because I thought I would) and sent him off to work.  He only lasted three hours and had to come home.  Nothing had changed.  I couldn’t get out of the bed and I was busting to go to the loo.

Thus began my week of hell.  I couldn’t get to a doctor, because I couldn’t walk.  Zac couldn’t get me to the car, and even if he did, I’d never have gotten upstairs to where the doctors office is.  For some reason, after my initial panic attack, I was strangely resolved.  I was worried of course.  I mean, my bloody legs wouldn’t work!  I had visions of me being in a wheelchair for the rest of my life.  I thought I’d broken my back in the middle of the night somehow – yes, I know this sounds completely stupid, but when you find yourself in this sort of situation, your mind plays dirty little tricks on you.  Meanwhile, we were trying to work out how to get me to a doctor.

My mother would come and help drag me out of bed and onto a computer chair with wheels and I would pull myself along the walls using the door frames.  I would go from my bed to the toilet and back to bed.  I was so tired.  I mostly slept during the day.  I couldn’t seem to stay awake.

After five days I noticed that I was able to move my feet.  They were so swollen they looked like bloody bright red balloons.  After seven days I was able to lift my leg off of the mattress about two centimetres, but bending my knee was almost impossible as my legs were also swollen to about double their size (which if you saw my legs, was enormous).

On day seven, we headed out to the car.  Zac had gone and gotten me some crutches, hauled me upright and shoved the crutches under my arms.

Oh my god.  The pain that I went through just standing up.

So he drove up to the doctors.  Managed to get me out of the car.  Mind you, he drove up onto the footpath and stopped right by the door and parked.  Hauled me out and I stood propped against the wall while he went and parked the car.  Anyway, we got upstairs in the lift and he had to deposit me in a chair in a packed waiting room.  That’s fun.  Anywhere between sixty and a hundred eyes staring at the woman on crutches that moved like a robot.

The nurse, of course, was disinterested.  We found somewhere for me to sit.  And by sit I mean, he leant me awkwardly against a chair.  Kind of like taking a broom and leaning it against the front of a chair.  My body did not want to bend.  It  rebelled with searing pain.  So there I was, propped on a chair, in tears, in pain, for forty five minutes.  Our doctors office does not give appointments.  It’s some antiquated cattle call where you just get to see the first available doctor.  You can request a certain doctor, but you may have to wait longer.

I didn’t want to wait longer than I had to, so I said anybody.   First mistake.

So I saw this bloke, (I refuse to call him a Doctor) he sat in a chair opposite me.  I have tears running down my face, Zac is holding my hand, he looks at my bright red, swollen left foot and decided that I have sprained it.

Sprained my fucking foot.

He made this diagnosis by looking at it.  From his chair.  Three feet away from me.

So I get sent off with pain medication and told to rest my foot.  What the fuck?  I’ve just spent a week flat on my fucking back.  I’m pretty sure I’ve rested my foot enough.

But off we go.  To rest a bit more.

Two days later.  I was back.   And lucky me.  I got to see the same doctor.  By this time, my right knee had also swollen up.  The diagnosis?

You have now sprained your right knee by overcompensating because of your sprained left foot.

I’m not even going to tell you what I said because I used words that I didn’t even know I knew.

We walked out of there with more pain meds and a pressure bandage on my knee, which was too tight, even though it was the biggest size he had.

I cut that bitch off as soon as I got home because the pain was unbearable.

I lived like this for another two weeks.  I was pretty much bed or chair bound.  I slept endlessly, ate little, and was miserable.  I don’t think I’ve cried this much in my entire life.

About three weeks into this mystery state I got my mother to drive me to see a physiotherapist.  I had got myself to a point where I could shuffle about  for short distances (and by short I mean about ten feet at a time) on the crutches.  My legs were like tree trunks, swollen, painful, and stiff as boards.   He was sympathetic, confused, intrigued.  I went there thinking that if I got some exercises to do, it might help loosen up my stiff joints.  He couldn’t even get my legs to bend.

While he was examining me, he made an observation.  All my joints.  I mean ALL of them, toes, ankles, knees, hips, fingers, wrists, elbows, shoulders, my neck were all swollen and hot.  While my limbs and torso were all cool.  He told me that he thought I had some sort of virus.  He specifically asked if I had heard of Ross River Virus.  I had, but really didn’t know anything about it.  So this lovely young physiotherapist wrote a letter and gave it to me and told me to go back to the doctor and give them the letter.

So three and a half weeks after I first started this mess, I went back to the doctors rooms and demanded to see a different doctor.  I handed him the letter.  He read it, tinkered around on his computer.  Put me up on an examination bed, and actually examined me.  He tested the mobility all my joints, took my blood pressure, took my temperature (which was through the roof) and most importantly he took about four pints of blood for testing.  (OK, it wasn’t actually four pints, but it was a bloody lot!)  They tested me for thirteen different diseases.

Another ten days later, I got the diagnosis.  I was positive for Ross River Virus.

For those of you that have never heard of this, its passed on by mosquitos.   I had one bite on my body.  ONE.   The symptoms are varied but basically it’s like having chronic fatigue syndrome, chronic rheumatoid arthritis and glandular fever.  All at the same time.   It explained a lot.

I was still sleeping anywhere between eleven and fifteen hours a day.  I would fall asleep wherever I was.  Which was a lot of the time, at the computer.  I hurt all the time.  It’s amazing how one becomes used to pain and can just push it away (most of the time).  I could not walk without crutches.  Most of the time I just sat on a computer chair and pulled myself around the house.  I killed that chair.

I had to learn to walk again.  It was like my body had forgotten how to move.  I had swollen, hot joints all the time.  I was living on anti-inflammatories and pain medication. It took five months before I could go back to work.  On crutches, shuffling like a 90 year old.  I couldn’t lift my feet off the floor, but I was determined to try.  I managed three hours, one day a week for four weeks, then two days a week for three weeks, then five hours a day for two days a week.  I was back to my normal two full day shift a week nine months after this all started.

I ate a bit, but not much, and I gained 18 bloody kilos in just over a year.

I basically have had the virus for two years now.   I will have it for the rest of my life.  If I get run down or get sick, the symptoms may return, but they are not able to say this for sure, because the medical community still don’t understand much about Ross River Virus.  It’s still somewhat of a mystery.  I’m much better, but have been left with joint problems, which they say I may never get rid of now.   There are days when I am in constant pain.  I just try to push it aside.  There are much more important things going on around me to worry about.

Like my life.   I really like my life.  No.  I LOVE my life, because its mine.

I’m lucky.  I’m not dying.  RRV is not terminal.

I have a husband who loves me.  He looked after me for two years.  He’s still looking after me.

I’ll never be able to pay him back, or tell him how much it really meant to me.  The fact that I’m sitting here, typing this with a lump in my throat and tears in my eyes probably tells you how much.

So my mantra is onwards and upwards.  I’m all kinds of awesome… I am.  I found out that I’m strong, resilient, determined, stubborn and extremely lucky.


About Juuls

50(mumbles) Daughter, Wife, Mother, Frustrated writer, Doer of not much if I can help it. I am NOT a morning person. Short attention spa OOH! Kittens!! I jiggle, therefore I am.
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2 Responses to The Last Two Years…..Can I get a refund on that?

  1. kristen says:

    I literally just had to go get a tissue after reading your story; I’m not familiar w/ wordpress but someone posted a link to this on tumblr & that’s where I saw it (I digress) ..anyways I was like strangely relieved but also kind of ashamed that I was comparing your story to the last 2 1/2 years of MY life (no joke) because I have had almost identical symptoms, but in my right arm/shoulder/side of my back. So yeah, I felt weird bc clearly I never had any problems walking, which I imagine is waaay worse, but to this day the cause of my pain/semi-paralysis has never been diagnosed as anything more than “we think it was probably some kind of virus that migrated to your cervical spine and damaged the shit out of a bunch of your nerve endings in your neck.” I, also, ended up being prescribed a boatload of vicodin (which makes me so incredibly nauseous the pain was almost preferable) and then I was switched to percocet (somewhat less nauseous on this but still just made me half catatonic most of the time) and I still have to take daily muscle relaxers (valium) or else my arm/back siezes up so much I can’t do much more than lay flat on my back. I also live w pain daily, and I can honestly say I understand what you mean when you say it’s kind of something you just ‘get used to’ even though it shouldn’t be that way and if you start to actually think about it, it feels “worse” (just b/c you are thinking about it). TBH though, I was almost jealous when you said you got an actual diagnosis and you had a caring husband who helped you through it – I was literally in the car, driving, moved my arm to change the radio station when it first hit me & I almost crashed bc of the blinding pain…and then really only had my parents (in their 60s) to help me physically. IDK if my story sounds trite to you bc I really don’t know how much worse your experience was but wth, I figured maybe it might make you (and me) feel less alone to know someone else has had a rare/undiagnosed/poorly managed limb-paralysis experience that is still (and according to my drs never going to fully “heal”) happening. I wonder, does this mosquito ever make it to the West Coast of the US? Bc really, even if I live w this pain for the rest of my life an actual diagnosis would be a relief. I imagine you understand that? 🙂 Anyway, I hope you are doing well & your husband sounds amazing so keep him around & also your blog is pretty rad even w/o this story so ((virtual)) high five –Kristen

  2. jose stroud says:

    Hi all, I feel your pain. In Dec 2010 the diabetes medicine “advandia” caused me to have a stroke. I then fell down my basement step and banged my left shoulder against twenty cast iron pipes. My rotator cup was so badly damaged even surgery couldn’t help. About a year ago I started taking 2000 mg of krill oil a day. I was taking percocek twice to three times a day. After three months I didn’t need the painkllers. After six months I could lay on my left side without intense pain and being dressed my my nurses aide was no longer torture. It also cured the arthritis that developed in my left hip snd knee.After two years I can walk with a walker and I have slight movement in my left arm. I can only move it a coiple of inches. But it’s progress. Another resident at this rehab center for 49 years. He got hit by a druck driver at 15, His spine and hup nerves were damaged so he wound up in a week chair for 49 years. I convinced him to try 2000mgs of krill oil and two months laater he standing and walking with a cane. Score two for krill oil. By the way after about a yrar for using kro;; oil I’ve stopped insulin treatment. y blood sugar has been unfer 89 every day for the last two months. It was 62 this morning. ?they gave me orange juice to raise it.jasrihjt

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