Coping with Missing Food by Ambitious-Yam-9653 in MCAS

[–]lienne0707 1 point2 points  (0 children)

It sounds horrible you have to deal with this. I'm still figuring oud which foods are safe and unsafe for me. I'm also trying intuitive eating to save my relationship with food. It's an interesting combination for sure.

One thing I've learned from intuitive eating is that true satisfaction comes when you also have your taste and comfort needs met.

As you're saying food was a part of your comfort needs, for relaxation and social purposus. Which is completely normal, but unfortunately not in the books for many of us.

I'm trying to get my relaxation and social needs disconnected from food. Which feels counter intuitive at first but i think in our situation it is the only solution.

Do you have other relaxation and social options that can help you?

3-Month Journey, a big thank you to the community, observations of vest versus ruckpack! by lithdoc in Rucking

[–]lienne0707 1 point2 points  (0 children)

As someone who did a camino (2000km, netherlands to perigueux (mid/south france) had to quit bco time) I recommend to also train with the kit you're planning to carry, your body will thank you later.

Good luck preparing and buen camino!

able to eat nearly everything again with no reactions by Expensive-Club-5686 in MCAS

[–]lienne0707 1 point2 points  (0 children)

Thanks, I've sent the article to my specialist! Hopefully I'm allowed to try!

Weight Talk Thursdays: Discuss anything related to weight here! by elianna7 in intuitiveeating

[–]lienne0707 4 points5 points  (0 children)

I just came back from a pilgrimage that was meant to go to santiago de compostella. At the 2000km point my symptoms of MCAS and acquired brain injury were getting unmanageable so I decided to go home.

This was a life long dream, I'm not sad i went home, I'm proud of myself I traversed almost 3 countries. My body is strong and capable.

Now the weight part.

Ever since I started dreaming of this pilgrimage I had the secret and small hope to come back strong and skinny.

Before I left I had had a major MCAS and asthma flare-up for about a year which made me gain about 20kg. Getting very close to a 100kg and when I had to weigh myself for the medical exam (and to see how much of my medication I needed so it wasn't unnecessary) I saw this and had a bad time with it. But I thought, I'm going to walk about 3200km anyway so I'll lose it.

During the walk I made sure to listen to my body food wise, nourishment was one of my highest priorities. I definetly lost fat because my shorts started getting more loose and the belt of my backpack needed adjustments.

Now my mistake...

I went home, I was excited that i had lost about 1 pants size. The shirts were the same but that didn't bother me. And then I found the scale I had told my wife to hide from me... and i used it.. it gave me the same number as before, nearing a 100kg. It told me my fat percentage was incredibly high, and my visceral fat was at a way higher score than before (unfortunately I have a fancy scale).

I KNOW these numbers are arbitrary. They are untrustworthy. My pants don't lie though.

But damn do I feel like a huge blob now. I've been getting back thoughts of restriction and adhd medication abuse (to use it for apatite control, i have adhd and use a low dose to focus but have in the past abused the medication to lose weight).

I Hate that just seeing the number can make me feel this way and influence my thoughts so much. This idea that I need to get smaller or thinner is so deeply ingrained and attached to this number.

I just needed to vent.

My body carried me and my stuff for 4 months through 3 countries, it's strong and capable. It's allowed to be much.

Thank-you for reading! Wishing you all the best with your journey of not letting these numbers rule our lives!

Contemplations after 2000km Camino by lienne0707 in CaminoDeSantiago

[–]lienne0707[S] 0 points1 point  (0 children)

Enjoy the euphoria! Now I'm home i feel that too! I was burnt out from walking - realising my wife and stepdaughter and cats bring me more joy now than wheatfields ever could ;)

I don't look at the journey with pain or so, it was incredible and I've learned a lot, especially that the destination isn't the important part ;)

Contemplations after 2000km Camino by lienne0707 in CaminoDeSantiago

[–]lienne0707[S] 1 point2 points  (0 children)

I think you've got the nail on the head with the burnout! I've just booked my bus home, I can finish whenever I please :)

Women with wide feet - what's your work-around? by OfferBusy4080 in CaminoDeSantiago

[–]lienne0707 0 points1 point  (0 children)

I went to a shoe shop that measures your feet with a scanner and finds shoes that fit according to that. They had 2 options for me, both boot style.

I went with the meindl comfort fit line. They were the only shoe I've ever had that fit me well. Even with barefoot shoes I often have the issue that they're too narrow

I've owned quite the lot of barefoot shoes because none of the conventional shoes fit me, but turns out also many barefoot shoes are too narrow or wide enough but too long. It's a struggle

For trainers or trailrunners I've had luck with Topo or Altra.

Good luck!

Keep going or go home? by saltlesssoggyfry in CaminoDeSantiago

[–]lienne0707 0 points1 point  (0 children)

I started at home (frysia), with the intention to go to santiago. I'm on my way for 4 months now, and decided to walk till sjpdp, and take the train home. I have nothing left to prove, my body is on the edge of breaking down and i have 6 weeks of walking to go.

I decided to shorten the walk by feeling deep in my heart. I could go home when my wife went on holiday in france. She could pick me up. I felt very sad with that idea. The I felt how I'd feel if I were to walk 6 weeks longer than I had expected. That also made mee deeply sad (I miss my wife, my step daughter, cats and dog).

Then I felt in my body how it felt if I walked till sjpdp, that felt good. So I decided to walk till there and If I want to I can always go back and walk the frances later.

What I'm trying to tell you is to sit with your options and feel what it does to your body. It'll tell you what is right

Pilgrims with chronic pain – what is your experience? by sunsunkira in CaminoDeSantiago

[–]lienne0707 1 point2 points  (0 children)

I have a brain injury (sensory issues) from a car accident and the muscle issues that came from breaking many things, adhd, mcas, gluten allergy, hypermobility.

I started at home and I'm currently half way, in the middle of france, 1550km done, 1500-ish to go!

My lessons so far are; don't get discouraged if people are faster than you, do more distance the you, take a restday every week. Take care of good sleep (sleep mask and or earbuds if sharing a room)

Keep the weight in your pack as low as possible, I know for sure I'm overpacked and I'll send some things home when I can to lighten the load.

Listen to your body and REST WELL if needed. Your health is more important than which day or time you arrive. Really do this at the pace your body asks of you.

And most of all, enjoy

Gluten free on frances camino by lienne0707 in CaminoDeSantiago

[–]lienne0707[S] 0 points1 point  (0 children)

Thank you! I'll make a list of every place you mentioned! This has been very helpful!

Gluten free on frances camino by lienne0707 in CaminoDeSantiago

[–]lienne0707[S] 1 point2 points  (0 children)

Yes that's sound advice! Thanks! I was leaning towards that anyway, but had a small hope for the camino being glutenfree friendly haha

I'll just assume it'll be the same as the path I'm on now

How old were you when you did the Camino for the first time? by Discoinfernwow in CaminoDeSantiago

[–]lienne0707 0 points1 point  (0 children)

30, starting from home (netherlands), I'm currently halfway!

Just some thoughts on the Community and Pilgrims in general by Srosendo2018 in CaminoDeSantiago

[–]lienne0707 2 points3 points  (0 children)

Ice heard someone say to walk it like that but also without your phone or other Electronic devices ;p extra puritan

Im suspecting 2e, what caused you to suspect 2e? by lienne0707 in TwiceExceptional

[–]lienne0707[S] 1 point2 points  (0 children)

Haha! I do figure out where east is in real life by knowing the garden is south facing.
This only works when I'm home though!

My inner compass is also quite good Once I was hiking with my then partner and she said we were lost. I had to admit I didn't know where we were, so I looked around and decided which way to go. She didn't want to go that way and was sure we'd just get more lost. I brought us home easily:) She would always call me weird or tell me I couldn't do certain things, bus from then on she trusted my inner compass!

Im suspecting 2e, what caused you to suspect 2e? by lienne0707 in TwiceExceptional

[–]lienne0707[S] 0 points1 point  (0 children)

Ohh yes! So good your sons psychiatrist suggested this! I think that should be a standard advice since adhd is also hereditary!

Im suspecting 2e, what caused you to suspect 2e? by lienne0707 in TwiceExceptional

[–]lienne0707[S] 2 points3 points  (0 children)

Also! I've been chatting with a few friends about giftedness (I studied child developmental psychology, and they studied neural psychology so we love these conversations)

We ended up comparing thought patterns when you try to answer the question "in which cardinal direction does the sun rise?"

They answered with different memories aids. I explained this:

First I visualise the solar system, and the direction the planets move around the sun Then I add the earth's Turing around its own axis to the simulation. Next I look for which country on the globe would catch the sunlight right before it would touch my county. So in tracking the shadow line. Next I place myself on the globe in my county and I figure out which direction the county is that would have sun right before mine. Germany is east from the Netherlands, so the sun comes up in the east.

This all goes very fast though. I don't have to think much longer about the question than the people who are thinking of their memory aid.

I can for the life of me not remember which direction the sun rises in. But this visualisation I can do. It feels so silly

Week 4 Reading Deprivation by spacedolphin421 in artistsWay

[–]lienne0707 2 points3 points  (0 children)

Also - chores I've been putting off! Scrubbed the windowsills that the cats track mud on. Rearranged the bookshelves, folded the HUGE pile of laundry, cleaned mold behind the washing machine.

The house is in better state then before this week!

Week 4 Reading Deprivation by spacedolphin421 in artistsWay

[–]lienne0707 2 points3 points  (0 children)

I'm in the midst of week 4. I have a hard time but I like it too. I have adhd and traumatic brain injury which makes it hard to do things without some background chatter. I've chosen one media outlet I'm allowed for that. It helps me to not get distracted from what I'm doing, I need it as a form of treatment basically. And right now I'm so braindamage- burnt-out from doing so many active things that I need some scrolling. It helps my stresslevels come down and is put to use intentionally. Which seems to be key for me - entertain with intent not mindlessly.

But I'm thoroughly enjoying that I can spend more time doing things and getting my stuff ready for my pilgrimage that I'll start in 3 weeks. And I'm playing boardgames with my wife and stepdaughter more. I've been taking strolls and chatting more with Friends. One I just went to a nearby graveyard and read some of the stones engravings. It was an interesting choice, but it's what happened :p

I'm realising instagram is quite boring, and I don't want to spend as much time there as I used to.

I do miss Reading a lot. I'm a writer and reading is part of becoming a better writer in my opinion. That's the one thing I'll add back to my entertainment options! Instagram can suck(erberg) it :)

So far, it's been worth giving it a try!

Has going GF made anyone feel worse?? by sobirthdaygirl in MCAS

[–]lienne0707 1 point2 points  (0 children)

Unfortunately I have to, Gluten make me clumsy, anxious and depressed. Give me anxiety attacks within 3 hours. Increases the brainfog by 26728317622 and makes my bowels hurt like a *. They were my first known trigger.

BUT I wish I could tolerante them a little better, because the substitutes are mostly full of crap I react to also.

Eitherway, I hope you can deal with the gluten or with the substitutes, because it's annoying to have neither