I couldn't do exercises by myself at first with my arms/neck at all - they were not effective and making me worse, but depends on where you are on the spectrum. I had two excellent traditional PTs who tried really hard to have me do isometrics and they were nice but not the needed treatment/cure; and they didn't identify me CCI (some PTs can - you want the ones who can).
You could get an inversion table and do gentle inversions to decompress your spine. Be careful as many of us also struggle with intracranial hypertension. If you do, you may need to investigate jugular vein compression and Eagles Syndroms (elongated styloids) - I have worked on both issues and I do have the elongated styloids that appear to compress veins upon me turning my head --- It's so good to have an explanation why you feel the way you do!
I also used this type of neck pillow few minutes a day for a long time https://www.amazon.com/Cervical-Traction-Fulcrum-Shoulder-Relief/dp/B01K6MFWY0
But unfortunately, I had to rely on my specialists first for pretty much everything. My osteopath and PT worked a lot on my fascia and soft tissues. My 4 (four!) chiros (atlas orthogonal, pediatric (intraoral release for the jaw), ABC, and the one experienced in EDS/loose joints) were instrumental. My PT was the one who did the most to stop my shoulders pull on my spine. She uses Bowen, Emmett and other techniqes and they worked for me. Two years of weekly back and forth rotation between specialists. It's a serious rehab program. I couldn't do it on my own. It was too much just dragging myself to the appointments.
I took a couple of classes in Bowen type technique for self help but it requires too much the use of the arms still to prevent set backs.
But all in all my progress was remarkable --- for example, when I started I brushed my teeth a few times a week because I just couldn't do it due to awful fatigue and exhaustion. I couldn't wash my hair, my husband had to do it for me. Today, I brush as many times as want. I take regular showers and wash my own hair. I can cook 1-2 times a week without paying for it with several days of non-functionality. I am, of course, still limited but I am able to ease off on the frequency of my visits to the specialists this year.
I probably should get back to the cooking. At first, we tried to make cooking easier by getting Thermomix machine (its so expensive!) and I couldn't really use it because it was too much work to wash it. I find Instapot a lot easier to take care off.
I relied on local food coop salad bar where they precut vegetables and I could eat some of their premade soups.
I found things like hotdogs, dehydrated mashed potatoes (no dairy or soy), chicken broth, berries, very helpful and easy to eat. Once my MCAS got a little better I started eating cured meats (meat sticks, sardines, etc).
Salmon roe (caviar) is my go-to food during really bad days.
I used to do keto, Whole 30, vegetable juicing and lots of other great things and I felt like crap still most of the time (even though some symptoms were indeed relieved by the diet but they were not treating the most disabling issues). I eat what I can access easily and drink coffee past year / year and a half, not all organic, and sometimes I even eat sugary things and gluten foods and yet my functionality is much, much better.
I relied on local food coop salad bar where they precut vegetables and I could eat some of their premade soups.
I found things like hotdogs, dehydrated mashed potatoes (no dairy or soy), chicken broth, berries, very helpful and easy to eat. Once my MCAS got a little better I started eating cured meats (meat sticks, sardines, etc).
Salmon roe (caviar) is my go-to food during really bad days.
I used to do keto, Whole 30, vegetable juicing and lots of other great things and I felt like crap still most of the time (even though some symptoms were indeed relieved by the diet but they were not treating the most disabling issues). I eat what I can access easily and drink coffee past year / year and a half, not all organic, and sometimes I even eat sugary things and gluten foods and yet my functionality is much, much better.
I have a chair with wheels and brake. I live in Norway, so we do get this kind of chairs for loan as long as we need it, and a new one when it need replacement.
I love my chair, I wheel around in the kitchen without needing to stand up.
And I make a lot of easy food, especially dinner that can cook in the oven when I rest and someone else set the table. We eat egg casserole at least one day a week, often with left over meat and veggies.
There are lot of food that You can make in the oven, and that gives You time to rest while the food cooks.
I also start with the veggies first, so I don't have to prepare those while the rest is cooking. A salad can be made several hours before dinner. Or veggies for boiling can lie in cold water with salt for hours before dinner. This way You split the work and can rest between the chores.
And always use a timer. I have a smartwatch, so it vibrates when I have to check the oven.
Our favorite oven food are;
- Egg casserole
- Chicken breast
- pork chops
- Dutch puff pancake
- Any kind of roast
I love my chair, I wheel around in the kitchen without needing to stand up.
And I make a lot of easy food, especially dinner that can cook in the oven when I rest and someone else set the table. We eat egg casserole at least one day a week, often with left over meat and veggies.
There are lot of food that You can make in the oven, and that gives You time to rest while the food cooks.
I also start with the veggies first, so I don't have to prepare those while the rest is cooking. A salad can be made several hours before dinner. Or veggies for boiling can lie in cold water with salt for hours before dinner. This way You split the work and can rest between the chores.
And always use a timer. I have a smartwatch, so it vibrates when I have to check the oven.
Our favorite oven food are;
- Egg casserole
- Chicken breast
- pork chops
- Dutch puff pancake
- Any kind of roast
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Pyrrhus
Senior Member
- Messages
- 4,172
- Location
- U.S., Earth
OMG, that chair looks amazing. I was looking for a chair just like that for my office!
Dutch pull pancake sounds interesting!
I do mostly oven cooking as well. Lots of chicken. Bake in the oven for 25 minutes and put a bunch of veggies in a steamer on the stove.
nina22
Senior Member
- Messages
- 174
I live alone, but for myself, I make big batches of meals on good days, like lasagna or soups, and freeze them so I can eat leftovers on bad days. Sometimes I can't even heat things up though. Even waiting for the toaster while standing up feels like years! Most of my food now is actually raw: granola, energy bars, nuts, fruit, cheese and crackers and boiled eggs kept ready in the fridge. I also have a stash of food right beside my bed for those days when I can't get to the kitchen. Still healthy, just less "traditional meal." Don't know if finger food helps with a family but maybe it could make lunches easier...
nina22
Senior Member
- Messages
- 174
and my whole house is a mess lol not just the stove!
Abrin
Senior Member
- Messages
- 329
I purchased an air fryer. I am really hoping that it will take less energy to cook smaller portions using it than with my convection oven.