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Bedridden To Hiking. Don't Give Up!


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Excellent news. Well done and long may you rein supreme with better health. It is hard work and takes a lot of willpower which isn't always available when you feel unwell.

Gluten damages nerves in the gut and I know with my health issues my bowel seems to be the epicentre of the whole thing. My gut is the happiest it's been for months since going gluten-free. I also cut out foods by elimination that were causing issues and I feel heaps better. I have a long way to go, but I am willing and determined. Good luck anyone who is going to work on their diet, such as only organic and low carbs etc.

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Thanks for bumping this up everyone! I've been away for awhile since life has been improving. Figured I should give another update....

I'm 2.5 years out from my health crash. Things are WAYYY better than they were. Please don't give up. For me, slow and steady is what's helping.

Recent gains include:

  • Run 12 km without stopping. I had to start from scratch on this literally learning to walk again.
  • Hike as much as I want.
  • Do weights, yoga etc. None of this can be at gyms due to scents.
  • Sleep well most nights. Still lots of sleep needed.
  • Horseback ride and do outdoor chores.
  • Tapered off the 21 medications I was taking down to 1.5 meds (Cetirizine and Zantac in the morning) This had to be done excruciatingly slowly.
  • Survived surgery. Took a great deal of planning due to my chemical and scent triggers.
  • Have increased to about 30 foods I can eat and trying to add more.
  • Can go into stores and other public places for up to an hour on a good day.
  • I don't really think about POTS anymore. Though I do need to stay hydrated and if I react to something my heart will race. When I don't exercise my heart rate and BP are not as good.
  • I can go to a movie if it's quiet and doesn't use air freshener.

STRUGGLES:

  • Scents and chemicals! Still set me off like nothing else. Have rid my life and food of them which is helping but slow going.
  • Safe accommodations are difficult to maintain due to reactions to building products.
  • Still need at least 10 hours of sleep
  • Need to limit stress as much as possible
  • Try to only make one diet/environment/med change at a time so I can know what causes what.
  • Getting close to anyone who uses fragrance, scented laundry detergent, or fabric softener. Still triggers anaphylaxis.
  • Need to keep my bedroom with a hepa filter and lots of fresh air to let my body recover at night.
  • Full organic, fresh, homemade diet. Organic bed sheets etc.
  • I cannot handle stress as well as I used to.
  • traveling. My water supply is still tenuous; I can't drink just any water without reactions has to be my home reverse osmosis. That and the scents on public transport make it impossible so far.
  • Socializing. Still at a screeching halt due to chemicals and scents on people's clothes, bodies, and hair.

I am still hopeful for more improvements in time, but extremely thankful to be where I'm at! I went gluten free for a time and didn't notice a change, so I'm back on it and very thankful for it as I can do so much with it on my limited diet. I think the biggest thing like Lyn mentioned is listening to my body and trusting it, but always trying to push it little by little everyday when it lets me. Other people might try to talk you out of how you're feeling but you know inside. There is no baby step forward that's too small. I definitely still have days when I'm over exposed to triggers or overdo it that I need to resign to just taking it easy and not pushing too much. But nothing like the bed ridden constant anaphylaxis phase. Eek.

I guess I should update my signature and cross off all the meds!

Let's keep fighting everyone!

:):rolleyes:B)

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