Revelations

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I’ve written so many editions of this blog where I have been feeling low, it is great to be feeling good for a change.

I have settled into a comfortable routine. I am up at 6 am, available for the kids as they get ready for school. I putter around until around noon. I am in bed, but I fold the blankets and put them aside so I can move around. I lie down as I need to, sometimes it’s ten minutes here and there, sometimes it’s a whole hour at a time. Between six and nine, I am definitely available for my kids, and they talk to me a lot! Once they are into their day, I am more relaxed.

After my afternoon medicine, I nap. Sometimes it’s right until 6:00 pm.  I am around for my family from when I get up (today it was 4:30) until the kids go to bed, usually by 9:00 (their choice) and then my husband and I hang out until the Sleep Monster comes for us. 10?

So, that takes care of getting enough sleep.

Other things I am focusing on:

  • Getting proper nutrition
  • I’ve been making sure I eat good food and don’t worry about weight gain
  •  Focusing on positive shows and experiences
  • Because I am stuck watching tv so much, I focus on more positive shows and not negative ones
  • Lowering stress
  • I have found some good apps to help me keep track of things, and I’m learning not to overload myself
  • Enjoying hobbies
  • Playing with makeup and crappy crafts are more important than they appear. They really help me relax. Organizing things is my kind of fun. 

So far, the results have been good. I am no longer constantly berating myself for not accomplishing more, and I’m having fun!  I still have body pain, yet it is discernable from my mood. In other words, I can be happy and in a good mood and have an aching back, and it’s been a long time since I could say that.

Exhaustion Takes Over

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I have been too tired for words lately. I feel like the exhaustion from my Botox treatments have passed, but I am the kind of tired from not sitting around doing nothing long enough or not sleeping well enough. My CPAP mask has been acting up, I just realized the other night I was spending an awful lot of time fiddling with it while I was supposed to be sleeping. My husband ordered a new one and it arrived today.

This month has been lousy with new makeup releases. I’ve been playing with makeup for so many days! My hands are sore, and I took  some photos today and noticed my eye was drooping in the photo, I was so tired. Yesterday, most of my photos were lousy. It’s hard to look good in a photo when you’re tired and sore. It’s possible, but, it doesn’t happen often.

I think the best thing is for me to put myself on vacation until Monday, April 24. If I feel inspired, I may post, but I’m hoping to sleep, rest my hands and wash my makeup brushes and rejuvenate. I have posts brewing in my head, but they will wait.

I’m getting jumpy. I should go.

Have a good weekend, my Zebra friends! 😘

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.