So in October 2015 I became so exhausted I could barely do anything, all my muscles, joints were aching or sore, and I had tendonitis flare ups all the time and I was going to bed at 8pm and one day my husband says “what is wrong with you” and I reply ” I don’t know I’m just exhausted to my bones” then a blood test came back positive for Ross River Virus.
Firstly I hadn’t been anywhere tropical or to the places susceptible to Ross River Virus outbreaks, which is what the doctor asks straight away. Just hanging around Adelaide. Our theory is Simon went up the river and a mozzie came back in the car (my car) with him and then I got bitten driving my car around after he returned.
So I had a few days off work to rest, as really I was exhausted and the first few months were hell, every month has been hell 13 months later, different levels of hell each month, some not as bad as others.
Google says it lasts for a few weeks to a few months.. but that is CRAP! It can last years I’ve found out, and even when you feel better you can have relapses.
Some of my recurring symptoms are:-
Brain fog (which is hard when I have to work with numbers), and I tend to get words mixed up more than usual, and reading out loud to the kids I get some words mixed up, does my brain even work anymore?
Aching joints / muscles.
Flare ups of tendonitis, wrists, ankles, top of hands get red, inflammed, hot to touch and so sore for a few days its a bit crippling as I can’t do much when they get like that.
Exhaustion to my bones.
Everything hurts or aches or is really fatigued.
I don’t want to socialise its just to hard and to much effort, when I do have a few days where I feel up to it, I need to leave early to get home to bed.
I want to rest as much as possible but life is so busy I don’t get to rest enough. If I didn’t have kids and a job I don’t think I’d get out of bed and that would be too much rest, and not very much fun, so kids and work are a blessing.
I can barely summon up energy to cook meals at the end of the day (which is not good when you have kids) they can’t live on cereal and omlettes every night and your husband wants meat and three veg but I do my best each day making sure everyone eats. I handball the cooking to Simon as often as I can, especially weekends.
I am desperate to get to bed and lie down at the end of the day it makes me cranky when I can’t or the kids are dragging their heels getting to bed, hurry up already I want to go lie down!
I am so tired and I don’t get much quality time with my loved ones (ie husband).
God so many days I want to stay home from work but can’t as I work for such a small business (wish I worked for big business where they wouldn’t notice me take sick days and it wouldn’t impact on the company).
I can’t sleep well as everything hurts.
My eye balls are so sore and fatigued (this really is to difficult to explain).
My calves are so exhausted I walk slower than I used to and it feels I’m walking on a treadmill not getting to my destination, I think it feels so exhausting in my calves that mentally it feels like walking places does take longer but it doesn’t really
It feels like I’m walking on broken glass when I get out of bed and walk for the first 5 minutes of the day (this only started a few months ago) but god it hurts my feet are super sore upon waking.
Doctors (I’ve been going to one doctor or if she’s not available another one at the same clinic) now she’s gone on stress leave and I’ve had to see others!! They can’t help they have no experience with RRV, well not the ones I’ve seen, they rarely see a case of it, two never have seen a case, and one has had a few, and one refused to even do another blood test as whats it going to show I’m still positive or I’m not but if none of the symptoms have gone away whats the point he says…one wants to send me a rheumatologist, one wants to send me to the infectious disease clinic, one wants me to see a physio, one thinks I’m depressed which is also a common symptom of RRV well no shit when you feel like this its no bloody wonder your depressed your whole way of life that was has changed and you feel like a shit wife and mother half the time, and doing just the simple things in life takes up so much energy and hurts.
There is more symptoms I experience, but these are the ones that come to mind right now as I write this.
I swear I think about the virus 24/7 every moment, every move its on my mind I hate it.
I have found a good support group on Facebook with 180 members (mostly women it seems) not that I enjoy reading other peoples stories of RRV but wow people suffer like I do every day, they can relate to you and you can relate to them and its good to know your not alone. I mean honestly some people suffer for the rest of their lives it seems, some as long as 20 years and that’s really not what I want to be reading. Depressing! Everyone has different symptoms though, and many the same. It is interesting to read and be in contact with people with RRV.
So I want to do some gentle exercise but god getting the energy to do it is another story, bed is more appealing, it seems gone are the days I can do some light weights and yoga at home as my bed is calling me at 8pm…. every night. To rest my weary body, not to sleep until later but I just need to rest. I love when I do get to body balance at gym honestly it hurts like hell but in a good way. I can’t even be bothered walking the dog due the paragraph up above and the fatigued calves!
I recently did a hike for an upcoming cub scout hike and OMG the next 5 days I was in so much pain, that I realised I CANNOT PUSH myself to do this level of physical exercise any more. I hated admitting that to myself, but it took to long to recover with such intense pain it is not fun and I can’t and won’t do that to myself again, not until I feel better. I have told the other leader and he doesn’t expect me to do hikes anymore thank god, but now I have to let my kids go off without me and that isn’t any fun, I became a leader to do things with them!
I want to do a body pump class but I know I will suffer for days after, but I do need to do yoga more often, that is my goal for the rest of the year to do Yoga 4 times a week. Twice at gym would be ideal and twice at home. That is my goal for the remainder of the year.
Some of the natural things I’m trying are essential oils and yes I love them and I know some help me get through the day.
Some other things I’m taking is golden turmeric paste, celery apple cucumber and coriander juice, celery seed tablets & magnesium tablets. I haven’t really noticed any of these make a significant improvement yet (I wish I had) but they can’t hurt to continue.
I don’t want to throw a pity party for myself, but sometimes I want to. Today is that day! As I sit at work with a bag of frozen peas on my swollen red inflamed wrist.
One thing that is difficult, is that just because family and friends see you smiling, going to work, being a mum and doing stuff everyday they don’t see the pain you hide and live with every day, having an invisible illness is difficult its not like I’m bed ridden, or in hospital or have something visible to others, so people have no clue how sick you really feel and the rare times they ask how you feel, and you tell them how you feel you know they think (or you feel they think) “bullshit” she’s happy, she’s smiling, she’s fine but I’m really not, but a smile can hide a lot!
I also try not to complain to much at home as the kids don’t need to see me or hear me complain of feeling shit house all the time, if I mention it to often they get a bit sensitive and think I’m going to die, and my husband for that matter doesn’t need to hear my constant complaints, I’m sure he can see how I feel most the time, but sometimes I have to tell them and have a whinge when it gets to much and I need a bit of help, co-operation and support.
From what I understand my body isn’t making the antibodies to fight the virus yet so they need to investigate why. I’m interested to see how the hospital appt goes at the infectious disease clinic see what they have to say. But from the FB group it could be a long long road of these symptoms. Fingers crossed its not and one day I wake up and feel better.
I wouldn’t mind trying some acupuncture though, especially for the sorest parts of my body, another goal before the end of year.. get acupunture.
Well what a depressing blog for today.. but such is life! It isn’t all sparkles, unicorns and rainbows is it.
I know there is worse things to have and suffer from, and so many sick people out there with so much worse. I can live with this its just not fun. Which is why most days I just battle on without to much complaint.