Waiting and Attempting to Avoid the Wallowing

Dear Audy,

I’m trying to keep my chin up, which is difficult because of how damn sore it is.

The great “Can’t Speak at All” drama lasted for a month or so, finally easing a little after a couple of weeks on muscle relaxants and anti-inflammatories. I immediately contracted the evil snot plague of ’13 and began to wonder if a sinus bug had influenced the extreme jamming up of my face hole. Which, it might have, however I’ve now received results from a scan that suggest the sinus trouble was just an added bonus. The new results suggest that I have arthritis. In my face.

It will be a few weeks before I can see a specialist and find out if anything can be done to fix it. I have to focus all of my hoping on the chance that there will be. My current symptoms are crazy hard to bear.

I miss smiling. I miss singing. I miss crunchy foods. I miss saying things that are just for fun, just because I want to say them. I miss making jokes and I miss laughing.

This guy helps.

Since coming off the extra meds, the jaw pain has been slowly growing with every attempt that I make to return to a life of conversations and laughter.

I can speak, however the amount of talking that I can endure seems to be declining again. I had a go at attending a small group catch up on Tues, which promptly led to a big fat swollen face that evening and the next day. It seems that talking to more than one person is more than I can cope with, which kind of rules out those vague hopes I’d been harbouring about some sort of group celebration party thing for my birthday. Sigh.

I was too unwell to celebrate my 30th last year and then I was sad about that fact. It has continued to sting me for much of the time since then. It was one of those milestone birthdays and I just missed it. I miss out on so much of life due to chronic pain and having that extend to the one and only celebration day that’s just mine to feel special on is like being kicked over and over again while I bleed out in the gutter.

I can logically recognise that this is a childish/unimportant thing to get upset about every time that the upset appears in my mind, but I haven’t found a way to make peace with it just yet.

I miss gathering friends together for a good time. I miss my old friends. I miss good times. It’s so much harder to move on with life and accept changing friendship dynamics when others move on to jobs and families and I move onto my next doctor’s appointment.

But we mustn’t dwell…not on Rex Manning day!*

And so, I will wait to find out more about my malfunctioning jaw and I shall try not to spend that time wallowing.

I will wait out the back spasms that have agonisingly crippled me for the past 40-ish hours, despite all of my efforts to warm up beforehand and then move carefully in order to do some laundry yesterday.

Sometimes, things just collapse and it’s not because a person didn’t take the best care that they could. I have to emphasise this point because I get so very tired of people asking “What have you done to yourself?” (which is blame disguised as a question) and telling me that I “need to be careful” (which is an assumption that I have not been being careful). There’s no need for the blame, a simple “What happened to you?” can get to the same answers without scraping my nerves.

I will wait. I will hope as much as I can. I will feel ok at times and cry a lot at others. I will write when my thumbs will allow it. I will keep trying to find better ways of coping.

I will keep trying.

Love & Squints that count as smiles,

*Things are always brighter when you can fit in an Empire Records quote.

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  • 10 thoughts on “Waiting and Attempting to Avoid the Wallowing

    1. Mich

      Hi Hayley, it’s Michelle from your old job on St Kilda Rd with Infosys. I am sorry to read you are having such a tough time. I hope the specialist you see can at least help with the pain in your face.. Arthritis.. Is that related in any way to your CRPS? Anyway I wish you all the best & hope you can get back to a time when you can laugh & saying things just for fun. Mich x

      1. Hayley Cafarella Post author

        Thanks Mich! The whole connectedness thing between my health probs has me stumped, I don’t know what’s influencing what. My pain dr is a rheumatologist, I’m going to call on Mon and see if he might have any answers as the results of the scan have come through after my last appointment. It’s weird to have a new thing to diagnose after all this time. I was getting set to be reassessed by a pain rehab team in the near future, now I’m not sure if that will be helpful or if waiting for some jaw conclusions would be better. Life is confusing! Which I’m sure you and S understand 😉 xx

    2. Mia

      Hi Hayley,
      Have you ever tried Scenar therapy?
      Helped me hugely with pain and spasms.
      You should give it a look-see.

      1. Hayley Cafarella Post author

        Hi Mia, I tried some Scenar sessions last year, but mostly my body just freaked out and after some sessions I’d be shaking and in more pain and after others I’d be a little better. I’m not able to pursue it right now due to costs, but might be able to look back into it in the future. Thanks for the suggestion! :)

    3. Mon

      Hi Hayley, I’ve had bad chronic pain for years including tmj and recently my GP sent me to a Lyme literate dr who diagnosed Lyme & I’m about to start antibiotics. Apparently it can cause all sorts of pain and mimic arthritis, fibro, CFs, even lupus. I am 33 and just got desperate enough to start looking around for other issues/causes. Just a thought. You would need to find a Lyme literate dr because normal gps have no training that Lyme even exists in Australia. Google “under our skin” there’s a really informative documentary about it which explains it better.

      1. Hayley Cafarella Post author

        Hi Mon! Thanks for the suggestion, I’m so glad that you have found an underlying cause that can be treated and I hope that you start to feel better quickly. My original pain was regional, which I don’t think fits the profile for Lyme, however it’s something I’ll look into if I’m able to afford extra tests sometime soon. So many docs lately that I’m bleeding money! 😉

    4. Kat

      I know how you feel darl and I have 3 gorgeous
      Shitzu s that as a great comfort when I am
      I’m so much pain in legs and back and crying
      When I can’t roll over in bed with out yelling in pain
      Or get out of bed cause of CPRS
      I was told should be in hospital as nothing of the
      Drugs working and is spreading cramps spasms
      Leg black and blue but I will hang in there
      Cause there are others like us
      Thank god I have my babies the get me through
      The bad days like to today
      Hope this helps you as you are not alone
      Kat. Keep that chin up and I will to

    5. Ross

      Hang in there! This disease really sucks and robs us of so much more than just the physical side of things. There isn’t a week that goes by where I don’t walk into a doctors office! Sometimes I find it harder to deal with all the mental side of things and how they affect my daily life. Keep positive and I hope your pain subsides!

    6. jen

      Sweetie, THIS SUCKS!
      Not your blog obviously… Your blog post is amazingly written as always! And there’s a qoute in there about friends moving on and you move on to your next doctors appointment that’s f*cking brilliant because that’s how I feel and as always its like you’ve taken thoughts out of my head and articulated them in to an amazing piece of writing.

      What sucks… Is that your going through all this. I hope that after the rheumatologist is done with your jaw… He/She will work their was down the rest of your body.
      You have lived through what you thought was the worst pain before and you will do it again as you ride the stupid wave that is chronic pain. Don’t get me wrong, I know how much your hurting and had timing been better, I would be there with you. And I will babe. As soon as I get better from this surgery.

      I love you Hayleybird and so many people do too.
      I’m keeping my fingers crossed that things improve soon, and I’m glad you were able to blog about it too.
      I will see you soon gorgeous girl. Xoxo

    7. Jeanette

      Hi there
      I’ve been reading your blog for a while, and just wanted to send some gentle good vibes your way from the other side of the world. Jeanette

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