Indeed, the frustration is an evil, but one I face daily because patience seems to be a life lesson the universe is determined to teach me. I constantly remind myself that my worth lies not in how much I am able to do, but who I am able to be. Hard to separate being from doing, but love doesn't take a lot of spoons, now does it? And that is solid influence, world-changing stuff. Show the abillity to love within these cruel limits, and I show profound power.
Driving is very tiring. It requires concentration, increased subconscious awareness, muscle control for the pedals, gears, steering etc and plus moving can be disorientating and strange when you've been sedentary for a long time.
I've watched your videos, and I so appreciate seeing a grown-up expressing what life is like with a chronic illness. I've seen too many perk teens making videos of "isn't it great how much better I am now." Life with long-term illness (I've had Crohn's since 1995) isn't like that. It's more the celebration of small victories, like driving, and the acceptance of today on its own terms. (Frustration requires spoons, too, you know.) PS I liked the fluff, too.
Great idea. I had a sucky sucky day, but I am grateful that I managed to enrol in my two remaining units, even though the course was full. I missed the enrolment date because I was busy having a kidney infection. Looking good too, nice haircut and beardlessness. That is so a word. Beardlessness. Lessness of beard.
hi im glad you mentioned driving I haven't driven for months well only short distances and was starting to feel like a fraud! but you have validated my feelings. I can only drive a short distance things moving make me feel dizzy and sick. i can feel very unwell after just driving a mile to pick my children up. guess it uses too many spoons!
It's all rather marvellous :D I can imagine how incredibly surreal it was to be behind the wheel again (it was for me after a long period unable to drive), but am incredibly proud of you. xx (PS Missing The Fluff, but props for the beardlessness and de-mulleting :D)
Thanks very much for the comment. I'm hoping that one day I'll be able to post some "I'm better" videos but I think without the ones before that, 'better' has no real comparison. I remember when coming downstairs was a victory and a sign of a 'good day'. The frustration cycle is evil and steals too many spoons! (PS. I'm sure the fluff will make an appearance again!)
Aw I'm sorry you had a sucky day :( Did they give you an enrolment extension due to the kidney infection then, or just let you in because you're lovely? I'm sure it was the latter :D And bless your cottons, thank you! I like the beardlessness ((well, flufflessness) beardlessness is sticking, I like that) but I'd grown used to the face fluff so I sort of miss it :)
Indeed, the frustration is an evil, but one I face daily because patience seems to be a life lesson the universe is determined to teach me. I constantly remind myself that my worth lies not in how much I am able to do, but who I am able to be. Hard to separate being from doing, but love doesn't take a lot of spoons, now does it? And that is solid influence, world-changing stuff. Show the abillity to love within these cruel limits, and I show profound power.
Driving is very tiring. It requires concentration, increased subconscious awareness, muscle control for the pedals, gears, steering etc and plus moving can be disorientating and strange when you've been sedentary for a long time.
I've watched your videos, and I so appreciate seeing a grown-up expressing what life is like with a chronic illness. I've seen too many perk teens making videos of "isn't it great how much better I am now." Life with long-term illness (I've had Crohn's since 1995) isn't like that. It's more the celebration of small victories, like driving, and the acceptance of today on its own terms. (Frustration requires spoons, too, you know.)
PS I liked the fluff, too.
Great idea. I had a sucky sucky day, but I am grateful that I managed to enrol in my two remaining units, even though the course was full. I missed the enrolment date because I was busy having a kidney infection.
Looking good too, nice haircut and beardlessness. That is so a word. Beardlessness. Lessness of beard.
hi im glad you mentioned driving I haven't driven for months well only short distances and was starting to feel like a fraud! but you have validated my feelings. I can only drive a short distance things moving make me feel dizzy and sick. i can feel very unwell after just driving a mile to pick my children up. guess it uses too many spoons!
It's all rather marvellous :D I can imagine how incredibly surreal it was to be behind the wheel again (it was for me after a long period unable to drive), but am incredibly proud of you.
xx
(PS Missing The Fluff, but props for the beardlessness and de-mulleting :D)
Thanks very much for the comment. I'm hoping that one day I'll be able to post some "I'm better" videos but I think without the ones before that, 'better' has no real comparison. I remember when coming downstairs was a victory and a sign of a 'good day'. The frustration cycle is evil and steals too many spoons!
(PS. I'm sure the fluff will make an appearance again!)
Looking sharp Halcyongeebs! x
Aw I'm sorry you had a sucky day :( Did they give you an enrolment extension due to the kidney infection then, or just let you in because you're lovely? I'm sure it was the latter :D
And bless your cottons, thank you! I like the beardlessness ((well, flufflessness) beardlessness is sticking, I like that) but I'd grown used to the face fluff so I sort of miss it :)