@ellie-ana - Tumblr Blog

Yesterdays wins:

- I have shifted my eating schedule around and I had no pain or bloating yesterday. Eating fiber meal for dinner and only 1g fiber (GI dysmotility likely gastroparisis so I need a very low fiber diet)

- I got my broken electric wheelchair shifted out with a new one yesterday, so now I can get out again 😃

- it was a wonderful day yesterday I had energy until 17.00 and didn't need to lay down before 17.00 ✨

- I made my daughter lunch and dinner yesterday and made myself lunch

- went grocery shopping in one store

- homeschooled my daughter

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility #homeschooling mom

Today's wins:

- had a fabulous cozy morning with my daughter

- homeschooling my daughter

- made avocado onigiri with my daughter I am teaching her to cook healthy meals

- crocheted a bit of the finishing details on my new sweater

- made my daughter dinner

- made my husband lunch

- cooked myself lunch and dinner according to my disability diet

- found my daughter some sports bras as she is hitting early puberty now just as I did at 9 years old, thanks to genetics.

- I have started Pumpkin Spice Café by Laurie Gilmore again as an audio book 🍁

All in all it has been a really good day, and my body hasn't been too bad today.

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility #homeschooling mom

Today's wins:

- Went grocery shopping in 4 stores as they were out of stock of several of the items on my grocery list. (My husband pushed me on my rollator as my electric wheelchair has stopped working Friday)

- homeschooled my daughter

- got 4 ring binders and 400 plastic inserts for my daughters drawings

- put all the plastic inserts into the ring binders

- filled 200 drawings from a box into one of the ring binders

- was up at 6.00 this morning and first took a break at 13.15, that is pretty good and wouldn't have been possible if I walked in the grocery stores

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility #homeschooling mom

Today's wins:

- sorted all my daughters toys (it haven't been done the past year due to me being too disabled to do so this past year.)

- tidyed the garage livingroom

- vacuumed the caravan

- taken a shower

- blow-dried my hair

- put makeup on

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility #homeschooling mom

I am really annoyed, last month my digestion and energy and pain was so good and I know it is my best month in year.

I am in a flare up again and I am extremely constipated and I have doubled my laxatives compared to last month, I am still extremely constipated and bloated in my stomach the most. My safe foods are changing and I have have to cut most of my safe foods out from last month, the few things I didn't react too today is 1 piece of brioche bread with vegan butter, 1 choco hazelnut wafer and black currant juice and my glucose tablets. I can likely also tolerate my soy chocolate milk but that is it.

My in-laws are coming on vacation to visit us and I can't eat anything, and I am more limited than I have been in a long time. We will be cooking and they will be eating out and I can't eat or drink anything as I am reacting to most drinks too.

It is what it is but, I am just so annoyed as I know me not being able to eat much will draw a lot of attention along with them not having seen my electric wheelchair in real life. It is 7 months since they saw us and then I used my rollator and crutches for the stairs

Now I use my electric wheelchair when out most of the time, to be safe.

It is a lot!

Tomorrow we are able to go outside again as the poisonous oak catapillers has transformed into nonpoisonous moths.

I can't wait to get into a somewhat normal routine, at least for me.

Edit:

Now my electric wheelchair has systemic errors and will not drive. I have warranty but I have to wait to resend it and figure out a deal to get it replaced as soon as possible on Monday.

Which means I can't get anywhere before I have an electric wheelchair again, and I have no idea of how quickly that can happen.

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility

Wins today:

- homeschooled my daughter

- inclusive cooking class today's lunch is made 90% by my daughter it was stir-fried rice with vegetables, she cooked the rice before breakfast so it could cool down as it have to for a stir-fry.

- my digestive and MCAS is flaring up and I have to adjust my diet and meds to it so I have tried a new lunch now we have to see if I have less symptoms

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility #homeschooling mom

Yesterday was a pain day, this morning it is better but a heatwave is hitting our area later today.

Wins today:

- homeschooling my daughter

- had breakfast at the right time in the correct amount

- have adjusted my meds to how my body have been reacting the past week, my best month of the year is over and I have had to up and even double some of my meds to adjust to how my body is most of the time 11 months of the year when my body doesn't what to act somewhat normal.

- my foods are changing as I every 2-3 months as it starts to react to my disability safe foods, I hate this changing period as I am terrified of all foods as it is like playing russian roulette for a few weeks to find my new safe foods for the next 2-3 months. I have found a few foods I can do, I don't know if I can do them everyday though and what amount I can do them.

- we can soon get out as the poisonous oak catapillers are turning into moths.

- been happy all day looking forward to the next year, moving to our home country, my husband finding a good job, living in a climate that fits my disabilities the best who has the cleanest drinking water so I don't rely on one brand of bottled water for all my drinking water and it is free too, and in a safe country where children walk to their friends and take the buses by themselves without any problems, children playing outside all afternoon spring and summer.

- Going home and finally know where home is, and the new prime minister is very promising too.

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility #homeschooling mom

The past days have been crazy stressful, but today is better. I am dreading the next two days as another heatwave is hitting us properly the last of the summer hopefully.

The past two days have been autumnal it has been so nice 😊

Today's wins:

- homeschooled my daughter

- had funny family time

- have talked with my grandmother

- have talked with my in-laws

- have tried a chicken skewer no seasoning which I didn't bloat or got any MCAS reaction from as of now, I might get constipated tomorrow though.

- I have watched some episodes of some British crime series

- in general it has been a good day

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility #homeschooling mom

Today's wins:

- given my daughter a haircut she got 10 cm cut of.

- homeschooled my daughter

- have practiced speaking my father's home country's language

- made my family dinner

Yesterday I finished the danish book

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility #homeschooling mom

Today I have been extremely fatigued, I have been resting since 10.30 this morning, I went to bed way too late yesterday, woke up with serious joint pain in my feet and ankles needing to wear my special formed ski boots an hour to reduce the pain and get them back in place.

Wins today:

- homeschooled

- rested

- reduced ankel pain

- made breakfast

- Brushed my teeth (such a struggle due to joint pain and instability).

- put make up on

- listened to an audiobook

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility #homeschooling mom

Today's wins:

- homeschooled my daughter

- gotten a shower and blow-drying my hair

- got a haircut for the first time in over 2 years

- started a new audiobook

- read 2 chapters of the danish book I'm reading

- stick to my strict GI dysmotility, MCAS, dysautonomia and reactive hypoglycemia diet

- rested after my shower as my body needs

- prioritesed what to use my energy on the next ten days and talked with my husband about it.

- practiced speaking my 3rd language the language of my father's and my husbands home country I understand it fully and read it, just struggle with speaking it.

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility #homeschooling mom

I have watched every TV series and documentary, film worth watching at least twice. My new found love is audiobooks, and they are easier to do other activities for hil listening and my girl doesn't see it as screen time when I don't look at the screen but just listen with one Bluetooth earphone in one of my ears.

I can easily pause and pick up when needing to answer questions.

I love reading but due to my disabilities it isn't always possible, and audiobooks and ebooks are easier for me to do on my phone.

I use screen time and audio books as pain killers in the form of distraction from pain as over-the-counter painkillers doesn't work on people with Ehlers Danlos and in general over-the-counter painkillers doesn't work on joint pain. Therefore my screen time is also very high, and that is something I hate as it doesn't set a good example for my daughter, as she can't see when I use screen time as meds and when I use screen time as everyone else for fun.

And I don't want to teach her to deal with mental pain by dulling the pain of being different from most due to her high IQ, with screen time. It is something she now have the age where she can start understanding the difference, so that is a talk we need to have soon.

She is homeschooled due to her high IQ and we are together most of the day, and have fun learning and having fun being together, but because she is so much home she also sees all my screen time.

Audiobooks makes it seem that I have less screen time, but I still get distracted from my chronic pain enough to be able to do things(not too physically demanding) while I listen most of the time and when I am in bed due to pain it just seems like I am listening to music or something else.

I am very aware and have always been aware of what I set as examples for my daughter, and what I want for her while she is growing up, most of all love and safety, happiness, health and parents she can count on always no matter what, and all feelings is allowed and we will work through the difficulties together, no matter what, and no matter what age she has.

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility #homeschooling mom

Found the Danish translation of Christmas at the Glitter Peak Lodge, it is more likely translated perfectly as Danish and Norwegian is almost the same the gramma is a slight difference but not much and the words is the same or almost the same.

Note: as I assumed the danish translation of Christmas at Glitter Peak Lodge is perfectly translated, in English it hurts to read all the direct translations are happening too often, it is horrible.

I am done with it and it was a good read in Danish not in English!

#ebook

Wins today:

- homeschooling my daughter

- prepared homeschool for tomorrow

- finished the first chapter of the English/Norwegian fiction book I started yesterday it is very poorly translated from Norwegian I will try to find the Norwegian version instead as this is unreadable in the long run, it is directly translated several places which makes no sense in English I get the point because I read and understand Norwegian but it is not pleasant to read in English. I am done with it in Danish it is a good read in Danish the translation is perfect.

- read 3 chapter in the Danish book I started Saturday.

- made my lunch for the next 3 days.

- made empanadas con frijoles for my familie to eat the next few days. And two tortillas con frijoles as I ran out of space for more empanadas.

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility #homeschooling mom

I have started this ebook tonight as a cozy read on my phone in the Libby library app.

It is very poorly translated from Norwegian I will try to find the Norwegian version instead as this is unreadable in the long run, it is directly translated several places which makes no sense in English I get the points because I read and understand Norwegian but it is not pleasant to read in English.

It is so sad that the English translation is so bad, because it is a very good Christmas book in Danish and Norwegian.

#ebook #hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility

Moomin inspired village

#art #drawing #hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility

Today's wins:

- read 5 chapters of the book I started yesterday

- played charades with my family

- eaten pumpkin spice sweet potato mash

- finished my sweater sleeves and half of the finishing touches on my crochet sweater that is quite emo perfect for autumn.

- made pancakes for my daughter and husband for dinner

- made a drawing

- have begone a cozy winter ebook in the Libby library app

#hypermobile ehlers danlos #ehlers danlos syndrome #pots syndrome #mcas #reactive hypoglycemia #disability #wheelchair user #gi dysmotility

Trending Blogs

Recently Viewed Blogs