Woke Up Like This

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This is me just after I woke up and took out my mouth guard and took off my CPAP machine and pulled off my sleep cap.  This is because my friends on Facebook were teasing me about looking pretty awesome even though it was hot and sticky and I felt awful. I thought this would be a good ‘Me at my worst’ photo.

There is actually a reason for my youthful facial appearance, and it has to do with EDS. Because of our faulty collagen, some of us do maintain quite a youthful appearance.  I’m not certain of the mechanics of it. But it’s a thing. Also, I’ve essentially been in a darkened room for 15 years, wear that damn sunscreen! And I look after my skin as a hobby.

There are some things I am not happy with, of course. I have a wattle under my chin. That may be from the 120 lb weight loss however. I’m exercising my face to try to lose that. I have a pronounced line around my neck that I dislike. My arms are a bit flabby, my boobs are really saggy, I would like a major reduction. My stomach is often bloated from gastroparesis, which I haven’t been officially diagnosed with, but I have. I would like my hair to stop thinning. And the really dry skin that cracks, if that would stop, that would be cool.

I acknowledge these things are nitpicky and minor, and I would only have necessary surgery to correct anything, such as breast reduction, as that may help my back pain or my constant rashes. If I need intestinal surgery, it likely won’t help my gastroparesis. I’m probably stuck with that.

 

We decided to buy my husband a Nintendo Switch for his birthday, only a month early so the kids could play this summer. It was supposed to be here Monday, but it showed on Friday instead. Everybody is rushing through their chores. 😂

 

I think I finally figured out what I was trying to say about jealousy so I can finally drop it. You can’t pick and choose what aspects of my life you want to be jealous of if you’re going to revile me. If you are going to call me a monster or a saint, it isn’t fair to analyze a microscopic part of my life. I’ve made mistakes, some big ones. But if you’re ignoring the big picture, you’re missing everything. And I think that’s what fascinates me about people. Why I dwell on things like this. It’s a puzzle to me.  Because I know if people took into account my whole life they would not be jealous.

(Jealous of ME? I’m nothing! This must be getting like bragging, but I’m sincerely not understanding, I’m so unimportant, I don’t know why anyone would bother, maybe they don’t, though and I have too much time on my hands. This is my conclusion. People often bring this up to me. 🤐)

 

Anyway. I’m spending my weekend relaxing. I have a birthday makeup thing to do for someone! I need to see my kids, my husband. Have a bath.

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Enjoy!

If you want me to do makeup in your favorite colour, or your favorite style, let me know! I’d be happy to try! 😘

Challenges of EDS

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Some of the challenges I face in my daily battle with Ehlers-Danlos syndrome are major. Some are minor, some are humorous, some aren’t. Let’s dive in.

Bathing and Grooming

Some days are better than others, but if I’m having a rough week, getting a bath is a tough prospect. Getting two is a dream! Part of it is having the energy. Part is coordinating with someone to be around in case I need help getting in or out of the tub (or need an ambulance if I fall). Let’s be real. I can slip pretty easily, and having my back seize up or my knee go out would not surprise me.

My husband spent an hour combing knots and tangles out of my hair today. My hair is super curly, and it gets so tangly. I wear a satin lined cap, usually, to sleep in, but it still will tangle and my arms can only go so long. My husband is amazing.

Digestive Issues

A common problem associated with Ehlers-Danlos syndrome is motility issues. This is where food sits in the digestive tract longer than usual. I  have serious issues with this. This, plus the medication results in serious constipation. Once every three weeks or so.  Unless I have diarrhea.  One thing for sure is the constant nausea. The medical marijuana helps with that, though. I don’t get the munchies, which is nice.

Tracking Medications

One thing I found very difficult was tracking my medicine, and when doctors asked what I was taking, I just looked blankly. My husband started making spreadsheets of my meds, with dosage, prescribing doctor, reason, and date prescribed to bring with me. I started bringing them to all new doctor appointments, and they were so helpful! Just print off a copy, they go right into your chart.

Dry Mouth and Skin

I try to drink as much water as I can, and take Vitamin E and Flaxseed. My eye doctor even commented it’s likely helping my eyes to stay slightly moisturized. Biotene makes dry mouth toothpaste, mouthwash, breath spray, but skip the mints.

I’m constantly trying to combat my dry skin, and I find I have to exfoliate a lot! I seem to have a lot of epidermis. I use Korean spa towels, and Caudalie Divine Oil on my body, and try an essence, serum and oil on my face when I have the energy.

Chronic Fatigue

I’m down to one major thing a day. Some days that’s a bath. Usually I have 3 hours of activity in me. Not hyper activity, slow activity. I need naps. I am really proud of the days I can stay up all day. I am having more of those, as I’m moving less. It’s a toss-up. I can move around for a short time, or I can be stationary and be available for a much longer time.

Weight Gain

Between not having the spoons to move too much and the medications I was on, it was really easy to put on a whole bunch of weight in 2009 to 2014. In 2009, I started getting sick from my gallery bladder and I couldn’t move. I was quickly confined to bed by the end of the year. While I was eating normal meals, about 1700 kcals a day, I was rapidly gaining weight. It was just too much for my non-activity. By end of 2014 I was 300 lbs.

Weight Loss

Starting in 2015, I decided to join MyFitnessPal and start watching what I eat. Towards the end of the year,  I was down 40 lbs. In 2016 I lost another 10, and then in April, 40 in 3 weeks. It took me a while to recover from being so ill. We don’t know what was going on,  but by the end of 2016, I had lost 100 lbs. I want to lose 30 more. I’m not pushing too hard, because I don’t mind some extra. In case I have another incident like April’s.

Losing Friends

Sometimes friends get it, sometimes they don’t. Sometimes they are okay with your terms, sometimes not. There’s always a negotiation when you have a disability, and sometimes it works out and sometimes it doesn’t, and sometimes things change in the middle. One thing,  I am often jealous of the things I haven’t been able to do.

Lack of Sleep

Adrenaline rushes or things on my mind will often keep me up at night.

Fun

A post on Instagram asked: What is the last thing you did for fun? And I couldn’t answer. I need to get more fun in my life and be more creative.

Chasing Dreams

I’ve had to give up many things I love. Crocheting is too painful now. Nail art was my passion, but my hands hurt too much now to continue. I love to read, but I can’t concentrate long enough to do it much anymore. I miss all these things. But I’m still trying to do them little by little or in my own way.

Staying Positive

It seems quite difficult to remain positive with all of this going on, but it can be done! It needs to be. My focus needs to remain on being as healthy and well as possible. Taking medication on time, eating well-balanced meals, following my food plan, admitting when I’m tired, staying away from negative people, not watching the evening news, maintaining relationships with my family, and practicing good self-care.