Having an endocrine condition means that I have mood changes and shifts throughout the day, which sound quite similar to pregnant women’s experiences. Varying energy and mood has a big impact on me every day- it’s one of the harder symptoms to deal with and it’s invisible. I take Hydrocortisone every day- 10mg at 8am, 5mg at 12.30pm and 5mg at 17.30. I know that when I change my meds, I can feel a difference, but it’s sometimes tricky for other people to understand and appreciate. Especially because I don’t broadcast what my schedule is for the day! I can increase my dose (stress dose) in some circumstances.
Last week, I repeated my Synacthen test on Tuesday, which meant coming off Hydrocortisone for 24 hours beforehand. I was doing very little for the majority of the week because of the test, so there were far fewer things to alter my energy and mood levels. This makes it a bit easier to demonstrate how rollercoaster-ish it can be for me: I did next to nothing last week and felt ‘all over the place’.
I drew pictures because a visual often helps more than words do. But you’ll have to ignore my wonky drawings!
Here was my dosing schedule for the week: 20mg is my baseline.
I increased to 25mg on Friday and Saturday because I had a ‘this might end badly’ feeling, along with a lot more dizziness, headache, waves of fatigue, pain when breathing, feeling sick, stomach ache than I usually get.
This is how my energy should look like during the day, just based on my Hydrocortisone dosing:
Here’s my actual overall energy for the last week:
It doesn’t show every fluctuation I had in every day, just a general picture. Physical activity also changes my energy levels, but that’s not shown here.
Here’s my overall mood for the week:
By anxiety, I mean I can’t let a thought go and get myself into a cycle of worry (about silly things). By low mood, I mean I’m crying a lot (again, about silly things). Yellow means both. There isn’t necessarily an emotional trigger for either. This also doesn’t show anger, irritation, elation…etc. It’s kind of expected that pregnant ladies will go through a cycle of moods and emotions because of their hormones and that certain, completely irrelevant things will make them grumpy or cry for no reason. I have that, but I don’t necessarily get the ‘free pass’ that pregnant women often get.
If you look carefully at my drawings, you can see that it’s not usually on the same day my dose changes that my energy and mood change. On a normal week, I’d be trying to ‘live’ rather than just existing at home, which takes a lot of planning on my part. I can’t just put my dose up because there’s something I want to do on a specific day. And even when I do put my dose up for a ‘good’ reason, even just by 5mg, I have to plan for the fact that in 2 or 3 days time, I will have lower energy and worse mood swings as a consequence. My energy and mood also change depending on physical exertion and emotional stress, which makes it even harder to predict. Plus I have all of the ‘normal’ emotional stuff life brings. Sticking with the visual, this kind of sums it up!
I like going out and doing things, but I get it wrong sometimes or there are other factors contributing. Which, to the outside world, can look like I’m disinterested or don’t care, especially if I’m quiet, I leave somewhere suddenly or I fall asleep. I try my best though, and, I’ve come to realise, if people aren’t willing to include me and accommodate my need to plan, then I don’t really need to be wasting my energy on them anyway.