I’ve fallen quiet again as of late. Been caught up with some family stuff and also just….tired.
Tired, that’s what you say. I know my 18 year old daughter has to say that at Tafe to her new friends on days when she feels… well, she feels in pain. Her joints ache, her chest hurts, her head hurts, even behind her ears hurt where there are no joints or anything you would think that could be inflamed and cause arthritis like pain….but believe it or not it hurts, for her.
But try explaining that to people…..”Behind my ears hurts and no I’m not having a heart attack but my chest hurts.”
Easier just to say “I’m tired”.
See, she also has Hashimoto’s and I understand a little of how she feels, although how her auto immune disease affects her is different to how it affects me, is different to how it affects my other daughter and is different to how it affects thousands of others. If not millions. I don’t know the figure but I just joined a new Hashimoto’s group and I’m astounded at how many new members join up every DAY and the ways in which it affects them is uniquely different, and yet we’re all the same in one.
We all feel crazy…we all feel largely ignored and misunderstood by the medical community, and we all ultimately say the same thing.
“I want my life back!”
So what IS an auto immune disease anyway?
Well, basically your own body attacks itself. See’s a particular organ as “the enemy” and tries to get rid of it. Strange, but sometimes the body just malfunctions and gets it wrong.
So in the case of Hashimoto’s it decides to attack the thyroid gland. In my daughters case she also has a type of arthritis so her joints are affected.
Your thyroid gland controls so much…unbelievable little thing it has with so many responsibilities.
Metabolism, mood, temperature (it’s like your inner thermostat) digestion is affected by poor thyroid function – and vice versa, even your reproductive hormones are controlled by the thyroid. (tell me about it!)
So when it goes dicky…well life can be one big ball of fun. 🙂
I was feeling frustrated again tonight by my “tiredness” and vented a little at the dinner table.
I know soon I will be going to see yet another doctor to try and get some answers – an integrated medicine doctor this time. I have been told by others that she will insist that I go dairy free, gluten free, sugar free and soy free.
It’s all these things that can cause inflammation you see, and inflammation is the devils work….basically it is the WORST thing for your already overactive immune system to cope with.
I am not looking forward to it because….God, do you realise that SOY is in almost everything in the supermarket! And….it’s in nearly every chocolate bar known to man 😦 (cry) but that doesn’t matter does it because I can’t have sugar either ( Ugly cry!!!)
Anyway, so I was feeling a bit daunted by the prospect of living on lettuce leaves….but then I came across this article.
…..and I had a lightbulb moment…
Basically the part in there that gave me the light bulb moment was this…
“Despite her best efforts to control things with her lifestyle habits, she seems to go backwards, causing her to lament, again, that no one knows what the hell is going on. Says the endo to O’Rourke: “This may just be how it’s going to be. You may always feel like you’re eighty per cent.”
Wow. And shit. And tears. And just for good measure, let’s read that again:
You may always feel like you’re eighty per cent.
80 per cent. And that’s at your best. What are the implications of this?
For me, it’s relief and sadness in equal measure. It’s a fact: I’ve not felt beyond 80 per cent – even on my best days – in six years. I’ve grasped and reached and tried in an effort to get beyond this ceiling. One day…one day I’ll feel good again. To think this is actually out of reach for the rest of my life saddens me to the core.
But, to be honest, the simultaneous relief I feel is greater than the sadness. For it gives me a leave pass from trying and reaching so hard. And I can back off.
I realise I have a choice. I can keep being the frustrated, forever reaching “sick” person. Or I can get OK with 80 per cent. And get on with the remaining years of my life.
In more dramatic moments I’ve wondered if it’s worth living if I can’t get back to normal, if I keep failing and lapsing.
But with this slight shift of perspective I can see peace is about accepting “a new normal”. ”
Simple isn’t it.
I just have to accept.
Not “give up”. Of course not….not for my daughters sakes.
I WILL try this restrictive…give up everything (including chocolate – waaah!) diet…
I WILL keep reading everything I can on the subject.
I WILL keep challenging doctors (oh they love me.)
BUT…….I will also go easier on myself.
On days when I really have no energy to do anything except “the basics” as I call it….well, there WILL be days when I WILL be able to do more.
I will try NOT to be so frustrated and feel like I am “wasting my life” because I can’t do a million creative things that are buzzing around in my head but I don’t have the “zing” to actually DO them.
I WILL repeat to myself “this is going to pass” each time depression takes hold and skews my perception.
I WILL accept that sometimes sleep just does not come, and other times it comes too much….at some point there will be a time just like the bears discovered…when everything is “just right”.
I’m just going to get on with it now…. Do whatever I have to, but not STRESS so much about trying to get back to “how I was.”
What I know I CAN be, is more achievable.