April 16, 2017
For three of the past four Easters we’ve vacationed at a Provincial Park in the South west corner of the province. We go with two groups of friends and share a condo with one of them. There’s so many things to do here and so many adventures to be had: mountain biking, hiking, off-roading, catching minnows and insects in the creeks, walking around, etc. There are countless opportunities for active fun, and with my newfound energy I don’t want to miss out on any of them.
But my body is fighting back. I’ve taken a bump of steroids before each excursion but I can’t really keep up. After my walk around the lake this morning in the freshly fallen snow I was panting and sweating profusely. I had taken an extra 10mg hydrocortisone before we started, about 10minutes into the walk I took another and I’m still not sure if it was enough.
Everyone is telling me to rest but it’s driving me mad. Why do they feel like they can tell me what to do? And why, if they see that I’m struggling, do they not just ask what they can do to help? I don’t want to rest, I want to do! It makes me feel very isolated and misunderstood. What I could give up though, is doing the dishes, tidying up, or entertaining my son. Any of those chores could be done by others before I get to it, and then maybe I’d be okay. It’s partly my fault I know. I have a hard time relaxing in general, and it’s close to impossible for me to do it when there’s a mess around.
I’m in another adjustment and acceptance period on the chronic illness timeline. If it was Addison’s all along, then I have to learn how to handle it all over again. I never really did try just pumping my body full of steroids so I could do whatever I wanted. I don’t know if it’s healthy or not, but I’m sick of missing out on things. That line of thinking is close to denial I know.
Chronic illness is hard. Every stage of it is hard and you never get away. You can take a vacation from your job, family, city and responsibilities but you can never leave your defective body behind.
April 13, 2017
I’ve been so well, uncharacteristically well, for almost 4 weeks! Every day I’ve gone for a walk, as well as kept up with the household chores and taking care of my son. I’ve done extra things like painting a dresser, de-owning more possessions, baking, meal prep, and social visits. I’ve done favours for friends and it’s made me feel so good to help loved ones. This is the best I’ve felt, continuously, in over 2 years.
It must be the prednisone. 5 weeks ago I finally got around to testing it out instead of hydrocortisone. I’m on a fairly large dose for adrenal insufficiency, 12.5mg split into two daily doses, but it’s wonderful. I don’t feel like I’m constantly crashing. I wake up groggy and weak, but within an hour I feel ok, and it generally lasts for the rest of the day. My chest pain was almost non existent for a while, but as I feel better and increase my exercise, it creeps back in. Not nearly at the level it was before though.
It’s definitely time to try working. The process is difficult though, and I feel like I can’t trust my manager because of his change in plans, and general unprofessional emails about it. I know I can do some office work, but am worried about what that looks like, and I don’t want to put myself in a position that will negatively affect my future. I’m most afraid of getting fired if I can’t do the job. If I go back with the proper supports and protocols in place that can’t happen, but if I forgoe those and do what my manager is suggesting, I’m afraid that’s a possibility. I believe his motives are pure and they just need me back because of increased workload, but I still have to protect myself. It’s unfortunate that it’s happening. It’s be nice if it was just easy and I could trust the system, but my priority is my and my families’ future.
I see my endocrinologist in a week and a half. I plan to stay in the prednisone for at least the next 6 months to see how I feel. He may adjust it, but I’m okay with that. For now I’m just enjoying feeling this way. It’s been so long since my life wasn’t dominated by weakness and fatigue and in a way I feel reborn.
I’ve felt good for almost three weeks now. I’ve felt normal, almost healthy even. I’ve been walking my son to school, I walked around the lake, I’ve done home projects and I’ve hardly napped. The house is clean, we’ve eaten well and the laundry is done. Some afternoons I’ve even been bored.