Amalie

Today's progress: Physical therapy Useful thing: errands Happy thing: I had lunch with friends Creative thing: I played in my art journal I'm completely wiped out and way too tired to think about tomorrow's goals. I'll make them tomorrow morning.

Thanks to a POTS flare (yay for heart rate swinging between 180 and 50 bpm) the only goal I met was choosing fabric. I rescheduled my meeting with the Red Cross. Tomorrow's goals: Physical therapy Useful thing: getting together with a friend Creative thing: undecided

Lol no. Tatting. It's in the same family as crocheting or knitting. It was popular about a hundred years ago. I'm not sure I like the end result, but knitting is an exercise in frustration right now, while tatting is possible. And cheap.

Today's progress: Physical therapy Useful thing: Set up this year's calendar Creative thing: I didn't make a quilt block, but I did plan my next project. That's an acceptable substitution. Tomorrow's goals: Physical therapy Useful thing: meeting with the Red Cross about volunteering Creative thing: choose fabric for planned project

Plan for today: Physical therapy, a quilt block, and setting up my calendar for the year.

I look forward to seeing your drawing I'm also working on improving my sleep, although it isn't one of my goals. I've gotten better at going to bed but not much better at sleeping.

Good luck with your recovery I've found meditation quite helpful in reducing stress. Are you doing anything to reduce muscle tension? I use heat on muscle spasms, do gentle stretching, sleep under a heated blanket, and take hot baths. That helps keep me at just tension and not spasms.

I do pt on land. Lol I hate the electric thing. Before the car wreck I was doing reformer Pilates. I love it and am hoping to get back to it soon. I like swimming, but it's also out. I quilt, write, and am learning to tat. I used to knit, draw, paint, and make greeting cards. For a while I was into altered books. There isn't much I haven't tried.

Everyone has to look them up Most of my doctors had never heard of EDS, and about a third of them had heard of POTS. Joint specific vs full body is a complicated question. EDS is defective collagen, and collagen is one of the primary building blocks of the human body, so in that sense it is full body. POTS is probably caused by EDS (60-70% of people with EDS also have POTS). They haven't found the causation yet, but the correlation is too strong for it to be a coincidence. Personally, in a full body sense EDS also affects my digestive system, skin, eyes, and makes me prone to bruising. But it doesn't affect joints equally. My knees and shoulders are my worst joints (they dislocate a few times a week), but most of my joints are bad to some extent or another. My right ankle was damaged in a car wreck, and surgery isn't a good option because of the EDS. Both knees and ankles are braced- my right ankle because it has to be and my left ankle because the knee brace puts too much stress on it otherwise. Good shoulder braces don't exist. If they did, my shoulders would be braced. I'm waiting for braces for some of my fingers. I have nerve damage from a bad blood draw in my dominant hand, so I can't control the hyperextension anymore. That makes my right hand essentially useless. I use forearm crutches to get around. At first it was mainly a balance issue (EDS causes extremely poor proprioception in many people, and I'm one of them), but since the car wreck they're absolutely necessary. For POTS I'm currently doing lifestyle changes (lots of fluids and salt) and a beta blocker. I saw minimal improvement with the lifestyle changes. The beta blocker helps bring my heart rate down, but we have to be careful because I don't have high blood pressure (they also lower that). I have appointments with an autonomic dysfunction clinic later this year, and they should be able to give better treatment options. My current cardiologist is just trying to hold me steady until I can see a specialist. Sorry to write a book, but that's about as condensed as it can get. You asked complicated questions I'm happy to answer them, but there aren't short answers.

I'd like to join I write, am learning to quilt, and am teaching myself to tat. I used to sketch, and am hopeful that I'll be able to try again in a couple of months.

Goals for every day 1) physical therapy 2) do something useful Due to POTS, merely sitting up is a challenge, so on my bad days anything that has me sitting up counts. On my good days, housework, grocery shopping, etc. count. 3) do something creative Writing, painting, drawing, sewing, planning a project, etc. Anything creative counts. Bonus goal 1: Keep track of POTS related things. It would be helpful but not necessary to have data for a few months in April. I failed the last challenge. I completed all my goals more than 95% of the days. But I didn't check in. I couldn't. They were all physical goals, and tracking them in one place was depressing. And honestly, they were too easy. They were hard, but they had to be done, and I'm damn good at getting necessary things done, no matter how hard they are. What I'm not good at is making time for joyful things, even though they're just as important to my overall well being. So here's to a happy and joyful, though difficult, challenge for us all. For those curious, my physical disabilities are Ehlers danlos syndrome hypermobility type and postural orthostatic tachycardia syndrome. I'm happy to answer questions about either. About eight weeks ago I was in a car wreck that damaged a couple of joints, initiated a snowball of complications, and led to situational depression. The pt is for the injuries from the car wreck.

I'm being consistent in physical therapy. That's as positive as I can phrase it. This injury isn't healing anytime soon, and it's already causing complications. The good news is that my pt thinks in a few weeks my ankle might be stable enough to modify reformer Pilates classes. Lol I'm in the class for injured people anyway, but we'll be scaling down from that. I love Pilates, so hopefully that will happen. I'm meeting with a nutritionist next week I'm looking forward to that. I've been struggling with sleep, but I'm doing the right things. I've been making fun activities a priority. Life is just better when I do something that makes me happy.

I'm having absolutely no luck in getting hydrated, but I'm hoping my tracking will show a pattern. Only drinking water to take my meds, one 32oz powerade, one nuun tablet in 24oz water, and the rest of my liquids being milk or juice is working best, but it's not consistent. I've been googling homemade electrolyte drink recipes, and I may try one of those.

Madambones, thanks! It looks like it's going to be a rather long recovery for my ankle, so I may need to have my something fun be unrelated to exercise.

I've met each of my goals every day. I started physical therapy this week. So far it's just simple non weight bearing exercises. Pt says no swimming until my ankle is more stable, but that I can try walking in the pool. I'm going to try that sometime this week. I think I need to reevaluate my goals, and see if there's anything that I want to do, instead of have to do. I've met all my goals because I have to if I want to stay mobile. It's meet them or lose ground fast. I think it's time to find something I can love, instead of something that's requires. I'll have to think about it. Suggestions are welcome

Nov 11 update: 1) iced ankle. Start pt next week. 2) went to bed on time 3) I had one high sodium meal, and plenty of drinks Life quest: read a book Nov 12 update: 1) still waiting on pt 2) my sleep sucked. I did the right things, but the weather changed, so pain kept me up a lot of the night. 3) I drank plenty. I didn't have a high sodium meal. LQ: read a book Nov 13 (so far) 1) still waiting on pt 3) high sodium meal and plenty of fluids LQ: met up with friends

Do you mind me asking what you're in pt for? This time I'm primarily in for a sprained ankle.

Main Quest: To manage my health and make the most of the body I have (I'm limited by a genetic disorder). Yes, my main quest is reasonable and achievable. My three quests and my lifestyle quest all build towards my main quest in small ways. Each quest has only one thing to focus on. My goals don't conflict with each other. Goal 1: Rehab. Twice a day at home, unless my joints are swollen and I need to rest and ice. This is realistic. Based on past physical therapy experience, I know twice a day is doable for me. This can be tracked, but not measured. I'll track in a log. This is pass/fail to some extent, but I consider the goal met if I take a day off because the rehab is pushing my ankle too far. I don't have a reward set. I'll alter my goals as needed due to injuries. Does not need to be modified due to holidays. I do have the time. Goal 2: Sleep. It's essential to healing, and I need to make it s priority. This will be measured by trying one tactic every night. This is attainable. I will consider this goal achieved if I do this 5 nights a week. I'll track using a log. Goal 3: Hydration. Continue experimentation on the proper balance of electrolyte drinks and water to get me close to hydrated. Measured by tracking what I'm drinking, making sure I get one high sodium meal a day, and keeping notes on how I feel. This goal is probably not attainable due to a medical condition, but that condition requires that I try. Life Quest: Do one kind thing for myself every day. This could be reading, working on a hobby, meditating, meeting with a friend, etc. One thing that makes me feel better about myself. I think this is attainable. I will not be measuring this. The only point in tracking is so that I can see on paper that I am doing happy things.

November 10 update: All goals met Goal 1 (rehab): I haven't started pt yet, but I did ice it to work on getting the swelling down. Goal 2 (sleep): I went to bed on time last night, gave myself adequate time to wind down before bed, and got a little over nine hrs of sleep. Goal 3 (hydration): I ate one high sodium meal, two high potassium snacks, and had two liters of powerade, 48oz of water. I was close to hydrated, but I'd really like to find a better option than powerade. Life Quest: got together with a friend

Lol I was so confused by your goal of 30 shoulder dislocations. My shoulders do dislocate, and it's not great for optimal fitness. Then I googled and realized it's a mobility exercise that doesn't actually dislocate anything. Good luck getting mobility back! Limited range of motion can cause all sorts of problems. Be careful about hyper extending your wrists. It's bad for your joints, even if you can do it naturally.

Blaidd, Are we allowed to change goals during the challenge? The goals I set are goals I'm working towards anyway. I won't know what I'm allowed to do until I see my physical therapist, so it will be another week or two before I can set safe physical goals (ex: swimming is out, but walking in water MIGHT be in, and the lower body body weight exercises I was doing are out, but I MIGHT be ok with upper body exercises). I didn't want to set goals that were destined to fail.

Ryke, Thanks! It's not really that I can't sleep. More than I don't make it a priority (ex: staying up late, or not icing or heating injuries an hour before bed, or not giving myself enough time to calm down). I need about nine hours to function at my best, but I usually get between seven and eight. Then I spend the weekend catching up.

I'm damn tired of trying, and I'm ready to be done, but I'm still here, so I'll keep fighting. Giving up isn't an option. This isn't the thread I planned. Two weeks ago I was in the best health I'd been in in years, was succeeding in reformer Pilates, and was mobile enough to complete everyday activities. I was ready to level up and make more progress. Then I was in a car wreck. I reinjured my bad joints. I lost the benefits of three years of hard work in rehab, and if everything goes well and there aren't complications it will take two years of rehab to get back to where I was. Pity party now over I do mainly body weight exercises, but I also swim laps. Pilates is out indefinitely. Main Quest: To manage my health and make the most of the body I have (I'm limited by a genetic disorder). Goal 1: Rehab. Twice a day at home, unless my joints are swollen and I need to rest and ice. Goal 2: Sleep. It's essential to healing, and I need to make it s priority. This will be measured by trying one tactic every night. Goal 3: Hydration. Continue experimentation on the proper balance of electrolyte drinks and water to get me close to hydrated. Measured by tracking what I'm drinking, making sure I get one high sodium meal a day, and keeping notes on how I feel. Life Quest: Do one kind thing for myself every day. This could be reading, working on a hobby, meditating, meeting with a friend, etc. One thing that makes me feel better about myself.

Shehulk, I do use knee braces, but for a different purpose, so a specific recommendation would be useless.

SheHulk, I'm glad your knee is feeling better. If you want/need to keep using a brace, I strongly recommend seeing an orthotist. Good bracing changed my life. As for weighted squats, if that's something you want to do, get an opinion from a good sports medicine physical therapist. They have a completely different mindset. I'm curious about limiting bodyweight squats. That's an essential functional movement. You squat every time you get in a chair. If you're doing them correctly (good form and proper muscle activation) they'll strengthen your knees. I've been in pt for my knees for more than a decade, through seven respected centers, and all of them have focused on being able to squat correctly.