When Your Body Speaks Very, Very Loudly

I feel like I’ve forgotten how to write.

I haven’t written a proper post in months. Not because I haven’t had things to talk about, and not even because I haven’t had time.

I’ve had the time, but I haven’t been able to find the words (hello brain fog) or the energy. (As an example this post has taken me a week to put together, working on it a little bit every day.)

Physical Aspect

Currently I’m dealing with a lot of health challenges.

I had my second surgery for endometriosis at the end of September, and while it went okay, it seems to have made everything else in my body flare up. Which means that I’m currently battling 3 autoimmune conditions, while being investigated for another two. On top of the endometriosis I am experiencing the worst eczema flare in my life – so bad the doctor considers it autoimmune in nature – and I’ve been told that I should live as if I have celiac’s disease (since I’m already gluten free that mainly means being more stringent with cross contamination and had to throw out my shampoo and conditioner). I’m being investigated for POTS (Postural Orthostatic Tachycardia Syndrome, or in other words my pulse shoots through the roof whenever I stand up) and Hashimoto’s Thyroiditis (when the body attacks the thyroid gland).

Day of surgery, 30th of September 2014

Day of surgery, 30th of September 2014

So far tests have been inconclusive, lab results have been lost, I’ve had ultrasounds, MRIs and CT scans done, leading to having 2-5 medical appointments per week  – frequently in different hospitals.

I was advised that if I didn’t reduce my work hours, soon I wouldn’t be able to work at all. Thankfully my work has been incredibly supportive – even more so than I would have expected – and I am currently working reduced hours to make room for my many medical appointments, plus give me the ability to (try and) look after myself.

Mental Aspect

It’s frustrating, exhausting and a lot of work. My medical appointments have to be my number one priority, work my second, and even working reduced hours I still feel worn out, exhausted and drained almost every day. I have one or two decent days, usually followed by 3-4 days of feeling horrible.

I don’t know how to talk to people about this, cause I don’t want to become the person who’s always negative. But I also don’t want to lie, when people ask me how I’m doing, and saying you’re “fine” when you’re halfway out the door for yet another medical appointment seems disingenuous.

I’m struggling.
I’m struggling because my brain is foggy ever day.
I’m struggling because my body seems to delight in finding new pains and aches for me.
I’m struggling because every morning I wake up with every limb feeling heavy and my joints hurting.
I’m struggling to stand up without passing out – especially in the evenings.
I’m struggling with having enough energy for doing even the basic stuff – cause even though I sleep 9-10 hours on most nights – and 11-12 hours at least once or twice a week – I’m always tired.

These things make everything (at least seem and feel) so much harder. My diet isn’t as dialled in as it should be, although I’m always 100% gluten free (whenever I get glutened I suffer), I am eating too much sugar and too many easy meals. I’m finding it difficult to get back on track, because I’m so exhausted and drained all the time, and standing up makes me feel like I’m going to pass out. It’s a bad cycle, and I’m having a hard time breaking it at the moment.

My partner David took me for a drive in the Wicklow Mountains, when I was too weak to do much, but still needed to get out.

I know that things will get better. I know that I am taking steps for things to get better – including working with some very skilled professionals to get to the bottom of what’s happening, and then address it through lifestyle, diet and medication. And I am surrounded by amazing people, including a very supportive work place, fantastic friends, and the most wonderful and supportive partner anyone could hope for.

But I’m not the most patient person, and I want to feel better now. And accepting that it’s going to take time (and has already taken far too long for my liking) is difficult, and that’s okay too.

On bad days I think my body hates me, on good, more lucid days I realize that my body is speaking to me very, very loudly and I need to learn to listen to it.

7 Comments

  1. So sorry to read of your health struggles, but I’m glad you have many positives in your life as well.

    Like

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