Hmmmm

I spend a lot more time online these days than I’m really comfortable with.

It’s definitely a habit more than a necessity, one born of years of depression, anxiety and the fatigue that both bought on. For a while online contact was pretty much all I had and now it is habit to just pick up my phone and check Facebook and tumblr…

Tumblr isn’t something I’d think of us too much a loss if it shut down tomorrow, but Facebook… over the years I’ve built up a small network of wonderful international friends. I’d miss them terribly if I didn’t have the contact of Facebook,
There’s no point to this post. Just musing. 

Changes Realised

I have spent most of today crying.

I cried because I couldn’t get the dog to calm down. I cried because I hadn’t gotten the kitchen fully cleaned. I cried because a layer of dust had settled over the couch again after I spent half an hour cleaning it last night thanks to the high winds today. I cried because I hadn’t cleaned our bedroom. I cried because I almost blew up the vacuum just before I finished vacuuming. I cried because the dining room table hadn’t been done (and it won’t be tonight).

I have felt like a complete failure from beginning to end.

Somewhere in there I realised that, as terrible as today has been for me emotionally, over all I cry a lot less these days. The support of my loving mate, the medication and doctors, and the encouragement of friends and family, have pulled me out of the black hole I used to live in everyday.

A few minutes ago I came to another realisation. The reason being so truly overwhelmed really, really, REALLY sucks so much worse than it used to is because it is now so rare. It’s not something I live with on a day to day basis…

And that’s nice.

And now I’m gonna eat my ice cream, clean my dinner dishes and go to bed, because today has truly sucked.

Bleh

My stomach is rotating between on fire and rolls of nausea.

My head is hosting a very mild headache that I’d be able to ignore if it hadn’t been there for a week.

I am physically exhausted and feel like I’m made of lead.

BLEH!!!!

Yes, I am seeing the doctor about this. A few more tests to be done to see what is causing this particular round of feeling disgusting, but I wanna whinge and it’s my blog so there!

Good News/Bad News on the Health Front

Some days I feel like I absolutely can’t win.

A week ago I had a massive blood screening done in the name of seeing what we could find out about my health. The hope was we could find something that may indicate the cause of the pain my hands are in.

So the bad news: Nada. Absolutely nothing to indicate there is any underlying cause for the pain my hands are in.

But, the good news: I am disgustingly, revoltingly, stupidly healthy according to my blood work. Everything except my PCO marker is exactly where it should be, and I was diagnosed with PCO/S years ago so that’s a known entity.

This includes:

  • General vitamin/mineral stuff (Vitamin D is back to normal – whoop)
  • Cholesterol
  • Blood sugar (we have a family history of diabetes so this is always a good thing)
  • The various markers that would indicate rheumatoid arthritis development
  • Inflammation markers
  • All forms of immunology markers including antibody levels (for the first time in a decade!)
  • Blood cell counts
  • Thyroid
  • Tumor markers

I am absolutely, disgustingly, perfectly healthy.

Next step is more x-rays of my hands and also some ultrasounds of them so see if there’s any tissue damage or cystic growths impinging on the nerves.

Which comes to my second bit of good news: New doctor is fucking amazing. Seriously.

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I have been told by doctors before that my weight is a concern when seeing them for everything from a fucking chest infection to back pain that I’ve had since I was a skinny kid of, like, 15. I’ve always had breasts that were large for my proportions and it causes back strain. You try carrying several kilos of weight on your chest all day everyday.

This doctor mentioned that I was carrying a bit of weight around my stomach and I needed to watch that, as with the PCOS I will have a hard time losing it. She was actually surprised when I admitted that I am my current weight (and insisted on checking it on her scales) and then, instead of just telling me to lose it and sending me on my way, she sat down and went through why it was an issue and what help she could give me. She listened when I told her about the struggles I have been having with it and what I had already tried. She gave me a referral to a nutritionist and dietician so I had some qualified support. She explained the difference in what level of exercise a normal person needs and what someone with PCOS needs to have the same effect due to metabolism issues PCOS causes.

In other words she wasn’t an asshole about it and, instead of wanting to punch her in the face, I left feeling apprehensive but actually like I have a chance in hell of working through this.

So yeah, health update: All is technically awesome, but we still don’t know why I’m in pain 24/7

Newly Wed

I waited for the professional photos so this was weeks ago, but on the 18th of March this year I got married to The Wild One. I have never been happier, nor felt so absolutely loved or cherished as I have in the years I’ve been with my beautiful Wild One.

For all the rough days, there are no regrets and I doubt there ever will be.

 

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This is what it feels like…

You want to know what chronic illness feels like?

Chronic illness feels like having a great job, but never having the energy for it. It’s being fucked whether you bullshit that you’re ok and push through till you’re a complete wreck and collapse, or are openly honest that you have serious limitations due to your health. Either way you’ll never feel secure in your position and you’ll always take too much sick leave.

It is finding the perfect door into your dream career and knowing there’s no point applying for it because you’re on your fifth or sixth lot of antibiotics for the year and it’s only early April, which means winter is going to be hell and there’s no way you’ll cope with full time work. You’re not sure you’ll manage to cope with your part time job as it is. Maybe because you’re barely coping with it at all right now.

Chronic illness is having to convince yet another fucking doctor that you’re not a hypochondriac. It’s having to push and fight every fucking inch of the way to get the care you need, to convince them to stop treating your individual health issues as individual problems and let you speak to specialists about the potential of them being symptoms of a larger issue.

It’s being perpetual tired and sore. Always. Literally always. Aching muscles, aching joints, and fatigue greet you when you wake up and go to bed with you no matter what you do. Your idea of a pain free day would make a normal person hole up in bed with pain killers and a heat pack. You don’t get that option because shit needs to get done. Kids need to fed. Jobs attended….

And your house will never be clean because you can work or keep house, not both.

Chronic illness is being up for doing things you’re really not up for doing, because otherwise you’d go slowly and silently insane from never stepping foot out your front door. It’s having to walk shorter and easier hiking trails than you want. It’s working your ass off to be stronger whilst knowing that no matter how much work you put in you’ll never make the grade to do the things you want. It’s learning to choose slower, gentler options for leisure in the name of actually being functional for the entire day.

It’s trying to explain to other people that going camping sick is ok, you just have to take it a bit easier, because if you only went camping when you were well you’d never fucking go. It’s cancelling on your friend with the bad immune system, or the one that works with children/the elderly/the sick or the one with young children over and over again because you catch everything that goes round and they can’t afford to be sick.

Chronic illness is feeling like a fucking burden. It’s the house never being cleaned when your partner gets home. It’s asking them to cook for you after they’ve been at work all day because you’re sick again and too tired. It’s never contributing as much, doing as much or giving as much as they do. It’s the little frictions you cause because you are not as capable as you need to be. It’s the frustration of alternately being babied and asked too much of, because that middle ground is hard to find.

It’s trying not to get frustrated with well meaning suggestions and ideas that you’ve tried before. It’s trying to explain that ‘no, exercise isn’t the answer for an already exhausted body’ and that driving 4 hours to sit and crochet by a camp fire is actually worth it. It’s trying to get across the sheer complexity of existing like this to someone who never has without getting angry or treating them like their an idiot, and feeling like it always sounds like excuses.

It’s watching them close off when you try to plan for the future, because ‘what if it never gets better?’

It’s feeling like you’re holding the people you love most back in every possible way.

 

Chronic illness is the frustration of trying to explain the above and more on repeat to every person in your life, especially your loved ones. Day in and day out. It’s exhausting.

These are the pills I take of a morning at the moment, just to try and keep functional and get my immune system coping a little better with everything that’s hitting it. 7 of them are regular daily ones, the 8th is an antibiotic I’m on at the moment for round whatever-I’m-up-to of chest infections this year.

I’m angry, frustrated and tired, and done. I feel like I’m about to lose my job. I feel perpetually like a burden, no matter what I do or how much of it. I feel like I will never be able to properly financially contribute to my household, that I let my husband down and that I’m frequently a bad parent to our kids.

I want to scream and force people to live inside my body for a day, just one 24 hour period, when they tell me I’m fine, or doing too much, or not doing enough, or that it’ll get better. This is what I live with, the good days are most people’s bad days and I lie a lot about how I’m doing so people will treat me like I’m somewhat normal.

 

Today I am squiring around in the chair as a write. Standing hurts, sitting hurts, moving hurts, lying down hurts. So does typing, crochet, and lifting my tea cup, but my hands have been like that for weeks now, and we keep on going…