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Old 10-13-2017, 03:47 AM #63 (permalink)
Tipnatee N Tipnatee N is offline
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Join Date: 2017
Posts: 593
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Tipnatee N Tipnatee N is offline
Banned
Registered Member
Join Date: 2017
City: New york
State: New york
Country: us
Diagnosed: 11/2012
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 593
Tipnatee N is a jewel in the roughTipnatee N is a jewel in the roughTipnatee N is a jewel in the roughTipnatee N is a jewel in the rough
Default Re: Exercise intolerance , how real is it?

Thank you Diamond for every bits if your kind thoughts and words. For a while , while my fibro was being diagnosed I often thought I might have ME/CFS judging from it's behavior it looks more than just fibro too. But My doctor stop all the test once he was sure that I have fibro then everything are fibro to him from that point on. No more convincing otherwise.

Anyway Diamond , I don't believe not trying hard enough at the begining meant it was your fault . Cause you can't get your condition from being lazy at the beginning. It's not like healing wounds or healing breaking bones from accident. It's not visible dammages that if healed wrongly you wont get chance to correct it. If you know what i mean. . It's very different.

It's very hard to wrap my head around no improvement cause as I said somewhere in this thread, when I lost my house and was evicted from my home . As crazy as it was , but once I managed to moved all my things to storage and checked in the hotel stayed and finally rested while being a completely homeless . I had a sudden burst of energy break ( it's funny that to us 'breaks' meant lots of energy and ability to works) I was out shopping for nessasary stuff which I wasn't be able to do before. I was walking for more than 4 blocks in manhattan . And that to me was the most beatiful freedom I have ever seen from me. I was out in the sun! OMG I was at the truly blissful sight that haven't seen in many years than i cound ever describe in words. My SPD was not even bother me that much at all ,sure sensitive eyes ears voice and balance maybe but it was so minor to me it didn't even matter. I was able to walk out the door by my self without any help that was the best thing that ever happen to me.
But after the month of moving from hotel to hotel with my bf . I was finally exhausted and every stiffness and pains and panic starting to reap my body of joy , that's when my bf sent me to his mom in CT . And That was my last free moment of my body in the real world.

Lubkos way , I still do like to move it move it and haven't stop moving. Just because I have excercise intolorance doesn't mean I don't move from bed ever. Sitting still hurts!!!

I do alots of things ,I love cooking things from scratch although standing is very limited for me cause my legs kept shaking like a leaf in the wind ( a cane and a tall chair with wheels are my life savior ) , I love crafts DIY stuffs , I do short dog walking , I still streching as much as I could while on the bed cause it's a less danger zone. Caused if I do not move it move it I will suffer from more stiff pains and poor circulation and thus another problems on their own. So every bits of movement I do are also made for the sake of my body. So I can not sit still for a long period of time cause that's when the pains settled in. Even typing on my iPad kept my fingers blood flow. Although my SPD is making my eyes felt like it kept get crossing ( it's not physically crossing at all i checked) and the words vitually often jump right at my face so much so i have to close one eyes and keot switching each time I read or type. Every small things I do is equally feeling of a real big movement exercise. Even if to you it doesn't.

So please don't think of me as someone who refuse to move. Sure I'm always doom when I do, but I also doom when I don't.

Last edited by Tipnatee N : 10-13-2017 at 04:16 AM
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