I could write down a list, how boring would that be? How long
would that be? But that would achieve little. Those of us who have AS and have
talked to others will have heard them all anyway.
There is also the fact that there are so many symptoms, and we
are all so different, perhaps part of the reason for the problems in diagnosis?
The main symptoms in common, I suggest, is the lower back pain, especially in
the morning, and the extreme fatigue. Both hugely debilitating in our lives and
walking like a pregnant duck while one hand holds the small of your back and
the other clutches at the wall, is so not a good look! But after that we are
all different, and we are different on a day to day basis, which again, I
suggest, is why those closest to us find it hard sometimes to understand.
They think they have it all figured out and know how to help them something else
happens!
It can attack so many places in our body anytime, It can be anywhere front joints to eyes, from feet to neck, from hands to heart,and there is no consistency, no real
pattern, there are many many parts of our bodies that can be affected and can
hurt and ache and scream with the pain, but we have no idea or control of, when,
or indeed, if, that will happen. We can go for years with a certain part of our
body unaffected - say neck- and then suddenly find we can’t move it because of
the muscle spasms that make us gasp, for weeks we can have physiotherapy, or
hot/cold treatment, adjust medication, then one day it is gone! It might never
return, it might return on a regular basis, it might just move in and stay put.
It is no wander that those close to us can become confused, but
doctors should know better they are trained after all, right? The
rheumatologists have spent years studying diseases like AS right?
They will understand that we are not being troublesome, or
awkward, or confused- it is the nature of the disease- right? Right?
Another informative and eyeopening blog post. You bear this disease with such good grace. Your blog posts should be printed out and distributed to the publicAn health workers and politicians. I do so admire you. R xx
ReplyDeleteNice post!
ReplyDeleteVigorously nodding my head in agreement!
Keep asking questions, keep shouting about how it feels to you, keep looking dor understanding from those who really should understand, you need answers, you need understanding and you need and have the right to be heard. Xx
ReplyDelete