What a Difference 5mg Makes…

…Or any updose for that matter. Updosing is where you take slightly more Hydrocortisone than your usual baseline dose to cover an extra stress or exertion. So my current baseline is: 15mg at 8.30am, 7.5mg at 12.30 and 5mg at 17.30. If I wanted to updose, I’d take 2.5mg or 5mg extra either at one of those times or in between if something specific happened. 

I’ve been updosing to pretty much a stress (double) dose for the past 3 days because it’s been my birthday. It’s frowned upon to do this, because it’s supposed to be for illness or other stress (ie not fun things), but I wanted to actually vaguely feel like a normal human being and enjoy it. It’s worth noting that even with the increase I’ve still had naps scheduled every day, had a lot of Payback to deal with and didn’t anywhere near do things which other people would count as ‘normal’ birthday activities, but I would have ended up in hospital without updosing. And I had a lot nicer a time because of it. 

Which is why it’s so bloody frustrating. I drag myself through life at the moment. There is not a point in the day where I don’t feel foggy, tired, dizzy, in pain or sick. On a slightly higher dose, I feel like I can keep up with conversations, my sense of humour feels lighter and I laugh more, I don’t feel as anxious about keeping track of where the nearest bench or toilet is, everything feels less like I’m moving through tar… It’s been amazing to feel even vaguely like my old self again. And I know that I can feel like that by increasing the pills I take, but I can’t. People on diets say they feel tempted to break them and how hard it is when they have treats in the house, imagine how tempted I feel to take extra HC and not have to struggle so much! 

But I’m not allowed to do that, and I wouldn’t anyway. It’s bad for my bones and heart and liver and blood sugar etc. It’s not an exact science and too much can cause problems just like too little can. Steroids are wonder drugs but they’re also not good for your body long term. So yes I have to take them to stay alive, but I need to keep the dose as low as possible. Which makes life miserable somewhat.

 It’s like being told to survive on one bowl of porridge a day and that’s it. Yeah you can do it, but you’d be tired, grumpy, have stomach ache, have lots of other side effects from not having a balanced diet and having things missing from it, you’d never feel full, not to mention feeling low from having the same routine and expectations of food every day and you see everyone else eating cooked breakfasts and feel frustrated. It’s so frustrating because, in my irrational moments, I know I can live better with more hydrocortisone. Except in my rational times, I know that it’s not an easy fix to pile on the doses just like that and there’s the bigger picture (i.e. The rest of my life) to think about. If my dose needs to be increased, it needs to supervised, monitored and justified, not just because I feel like it. 

I really enjoyed the few days I was updosing for my birthday, but it does feel a bit like Cinderella being allowed to go to the ball and then getting locked back into her house with chores and tasks to complete. I’m expecting a bit of a crash in the next few days-  a natural one because the birthday fun has come to an end, like most people would experience. But also an adrenal one, partially fuelled by an emotional response to my Cinderella simile but also a physical one because I’ve done a lot the past few days and I have to taper back down my hydrocortisone to my baseline. It’s not pleasant and I really loathe it. Maybe somebody rich will knock on my door with a shoe and offer me lots of money/a kingdom to rule and it’ll all work out in the end! 😉 

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4 thoughts on “What a Difference 5mg Makes…

  1. Empressa says:

    Just stumbled across your blog via the “chronic illness and Parenthood aren’t the same thing” post as I was searching to see if anyone has used the term “diagnosis: chronic parenting”. I want go name my parents with chronic illness support group that. Anyway, loving your posts. They are super relatable. I have lupus, bulging discs, fibro, endometriosis, etc.
    I had to miss out on part of my sons birthday the other day because of a lupus flare. It’s so frustrating having to miss out on, or scale back dramatically, the things most people go all out for – birthdays, vacations, holidays, etc.
    I hope you had a wonderful birthday despite all of this and the comedown from the hydrocortisone increase isn’t too rough. Feel free to email or FB me if you’d like! Emprkomlo@gmail.com or facebook.com/TheGrammarDominatrix

    Liked by 1 person

  2. mo says:

    I am visiting my son right now in a different state, needed to fly here (had to updose). Different weather and altitude here, have to updose. Had a wonderful party-get-together with their friends on the weekend, had to updose. Up dosing is just part of our lives. It helps us get through good things and bad. I really don’t think twice about taking extra, I don’t do it everyday, but if I need it I will not hesitate! Happy birthday
    Mo

    Liked by 1 person

    • Ok Then, What's Next? says:

      Thanks! I’ve been having a 10 month long battle with my GP about this. Updosing to me makes sense, but she got to a point where she wouldn’t prescribe me extra HC even when I had an infection so definitely needed it! I’ve taken in some patient leaflets from my endo and got my endo to write to her numerous times so hopefully she’ll listen now. But until about a month ago she was literally just prescribing me my baseline and that was it. Hope you have a lovely time with your son 🙂

      Like

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