Things I have learned this week – living with RA and Adrenal insufficiency and other things


Things I have learned this week:

I prefer invisible illness to very obvious illness. Luckily, my eyesight is not good, and my skin is thick but it does amaze me how openly people stare…not look, not peek, but stare! While society has progressed in so many forward thinking ways, I think it would be nice if we could bring back a few basic manners!

I now know where all the public toilets are in the main shopping centre and near the kids college. When I need to hurl, I need to hurl!

I’ve learned to carry an extra headscarf or two so that I can kneel on it when I don’t have time to check if the public rest rooms toilets floors are clean and dry.

I’ve learned to hurl pretty quietly.

And I’ve learned to carry a water bottle, always.


I’ve learned that there are some lovely people who will hand you a paper towel when you come out of the stall…and I’ve learned that most bathrooms don’t have paper towel anymore and have those stupid hand driers instead!!!

I’ve learned to devote a whole section of my back pack to tissues, and wet towelettes 

I’ve learned that sometimes a complete stranger will offer to sit with you for a while, just to be sure you’re Ok.

I’ve learned that prednisone isn’t any where near as magic as it once was. I am really sick right now…beyond fatigue, pain, headache, nausea, and brain fog doesn’t cover it.

This morning i had the home open, again the Chicklet helped a lot. The house wasn’t showroom standard. My agent looked horrified when he saw me. I do look pretty darn awful these days. Least of my worries..LOL

I’m going to try and eat a steak today. I need iron. I need to buy a good multivitamin. Just because it can’t hurt and I’m barely eating. My weight is still ballooning however, lots of fluid as well. Hair is beyond weird…there is some fuzz growing back, and new bald patches. It really looks crazy .

While I’m trying to laugh it off, there are times when that is really not easy.

I went to gym twice this week. LIght work is better than nothing. I checked out my gym tracker, and realise that every day I have more than doubled the amount of steps I’m taking. Before the kids went back to school, I was doing between 2000 and 4500 steps per day, and a light gym workout 3 or 4 mornings.

Now, out of sheer necessity, I am doing 6000-7000 steps a day. That’s just from needing to get the kids to and from school, and two medical appointments. So that kinda explains why I am SOOOO incredibly tired. My body IS working a whole lot harder than it normally does, and it really can’t do that.

For the last two years I’ve spend 20 or 21 hours a day lying down. Now that’s not possible and I am having to be upright and walk. And my body can’t cope. So of course I feel like horrible all the time.

Apart from the 40 minute open, and a look at a house (with a pool) I have spent the entire day lying down. Rest today, hope that I can do something fun tomorrow.

More than anything, I want to go to my Centergy (yoga Pilates) class in the morning. It can be a hard class, but it can be very gentle as well. And the stretches would do me good. And the gym has always been my happy place. Gym will be the very last thing I give up. When I move I will find one closer to my new home, wherever that may be.

The house with the pool made me dream about owning that pool. It’s a small pool..but hydrotherapy daily, in my own back yard. How nice would that be??? The climate here isn’t really hot enough for a pool…but it is still a beautiful dream.

I am feeling the pressure to move quite severely. I have a day of rest tomorrow, and then the whole circus starts again. There will be less stress because the kids are getting more familiar with the place. Gamerboy is still having a lot of trouble though. It’s to be expected. I can’t make it any harder on him than it already is. I will rest tomorrow, all day again if need be, and I will get through next week. And the week after that. And the week after that. As long as it takes.

Everything else is falling by the wayside. And that’s fine. It has to be.

If I had a friend nearby I would shout them best, thickest, juiciest, tenderest fillet steak…all they’d have to do is cook me one . Oh and maybe pour me a glass of red. Maybe 


  1. I would get Sheryl to cook it, I mean you would have to get her one as well. Only a filet for Ms. Sheryl however. Of course since I am in the US, i will just ask Sheyrl to fix me one and then you can live through me if you wish.

    Come to think of it I will ask Sheryl to just fix me one, but she will be more agreeable if she knows it is for a friend as well. 🙂

    Ahh PS: if you get a call from a nice lady in Indiana asking about fixing steaks please agree it is a good idea.


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