Medical Journaling

How do you make sure that the different pieces in your life all stay stable and well managed? The answer is that there’s no magical answer for everyone in doing this and that, unfortunately, it’s just a lot of trial and error. No matter how good of a regimen you have, no matter how good of a system, and no matter how good a support structure you have, there are always going to be flares and there’s always going to be difficult days that your symptoms are more pronounced than on other days. I think the key to focus on isn’t whether or not you’re having flares, but whether or not those flares are at a manageable level, and whether or not they’re staying at the same amount of frequencies.

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The last few days have been difficult, high pain days. Had a dystonic storm on Saturday, which was an unexpected work out. In order to stop the storm, I had to take a high dose of benadryl which kicked my butt. Have been resting and trying to let my body recover.  

I haven’t been eating as well as I should and it has resulted in exacerbation of my symptoms. The stress of all that has been going on is also a factor. But I have more control over my diet then the stress. I do what I can to manage the stress levels, but there is only so much I can do in that department. However, I have control over my diet. So, I need to eat better. 

Let’s remember to be thankful.

I am grateful to have technology that let’s me connect with those I am separated from. I’m thankful for my hubby who is always amazingly supportive. I am thankful that my daughter is home with us. I am grateful that none of us have COVID-19. I am grateful to be working. I am grateful to have the supplies needed to make masks. I am thankful that I know how to make them. I am thankful that I have been able to continue with nerd nights on the internet. I am thankful that there are so many working to get this virus under control. 

What are you thankful for? 

Keep Track!

This is such a frustrating time to have a chronic illness. Everything is being put on hold. It is so frustrating to have things postponed after waiting months to get them in the first place and then not knowing when they’ll happen later. All the worrying about what can go wrong can wreck you. While I think we all understand why these measures are important and have to be put into place, it is still hard not to feel like we are being in some ways disregarded.  

Please, don’t let these delays in care hurt your self-esteem. Please, keep track of everything being cancelled so that you can follow up with everyone later when the COVID-19 storm settles. The medical system will be disorganized once we are past this and it is likely that people will be over looked. So, keep track for yourself. List them in order of your personal priority so that you will know which things to chase down first. 

Grief

Grief is a strange thing. It comes at you when you least expect it. You think that you’re ok until you’re suddenly not. As awkward and uncomfortable as these moments can be, they are completely normal and ok. It’s not a sign that you’re unraveling. 

I had to remind myself of that today. I as grocery shopping and there was this little teapot flower pot with a small red flower planted in it. When I saw it I thought to myself that I should buy that for my Grandmother because she would love it. Then reality caught up with me and I was struck with the grief of her death. So, there I was in the grocery store, holding this little pot and crying. 

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I have recently been more open about my diagnosis of EDS and have been talking about it with more people. Not that I was ever trying to hide it, but I personally have been more educated on it and am learning more all the time. This makes it much easier to have those conversations. One question that I have been getting frequently is some variation on “How do you cope with the losses that your chronic illness brings?” I find this to be a surprising and strange question. I’ve also struggled to answer it. But here goes!

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