So I haven’t done any posts recently, mostly because my uncooperative “OS” has been malfunctioning as it does, making the most simple of tasks less straight forward as anyone with a disability can relate to.
This has included but not exclusively, inflammation in my shoulder
with my wrist & hip slipping out of its socket plus tendinitis in my
Also I’ve had “trochanteric bursitis” which I have to say I had never
heard of but again it’s more inflammation, this time in the hip joint.
I’ve been having pain running down my tight bone & was beginning to
think it must be my head until my rheumatology nurse said otherwise.
I think that after years of having to cope with my previous
rheumatology team that instead of helping you, made you feel
continuously guilty & that you must have some how caused your immune
system to ‘malfunction’ & so there for you should feel guilty about
I can’t remember how many times I had come out of an appointment
crying, feeling utter despair & how many times I had felt that
because of what they had said implying the pain must be in my head &
no one wants pain, so why wouldn’t it just go? I had reached the point
that I would rather grimace in pain than go back into that room.
So I went to my GP because I knew deep down that what they had been
telling me was not true & that I wasn’t getting the treatment I
needed. He was angry & asked for a second opinion at a neighbouring
hospital. I went and she was NICE, so nice & kind & agreed I
wasn’t getting the treatment I needed. She asked me did I want her to
write to my consultant or did I want to move? I ripped her hand off, I
wasn’t going to go back to that hospital.
It’s not perfect, my new hospital but I think a nice touch is them
not laughing at me & although even with the new treatment I’m on
Isn’t fully managing my arthritis as I still have inflammation &
joint damage its still more effective than what I was on which shows how
important getting treatment is.
Also I some how managed to dislocate my little finger with nothing
more than the slightest of pressure. Thankfully I managed to pull it
back into place which my GP agreed was the most sensible thing to do
& to do the same if it happened again, which although i’ve had some
close calls thankfully it hasn’t as of yet.
And I think that the sad thing is that when he believed me without
question that it was so nice. Not because I was hurt but in the past
when i’ve told doctors something happened including my old
rheumatologist it wasn’t uncommon not to be believed. Which I find
insane & through them not believing me I feel like a fraud but also
suffered from not getting the treatment I needed.
The thing is although my treatment has improved since leaving the
other hospital my treatment is still lacking in areas. NHS resources are
badly stretched & this vital service seems to be struggling. One of
the other rheumatologists in the team has left, which has meant that my
rheumatologist is taking on more patients even though they are deeply
stretched as it is. There seems to be a pattern in the NHS when people
aren’t “let go” the staff instead aren’t being replaced when they leave
which I hope isn’t going to be the case.
So will patients suffer? undoubtedly yes in my opinion because as
much as my rheumatologist is great even she doesn’t have enough time to
make certain that I get the correct level of monitoring, that any non
standard tests are issued & that issues are investigated deeper.
They are trying their best to keep everyone’s head above water
reacting more to people in the more extremes of their illness than
having the ability to keep people stable or to improve difficult cases
Don’t get me wrong, I am extremely grateful for the NHS even when the
service is patchy as I know there are people left without even basic
health care in certain parts of the world. However we should strive for
better whether a condition can be stabilised or not. People should have
as much health care as they need to improve their quality of life in
what ever way possible, however small.
I have experienced the best & worst of the system. As I’ve
mentioned my last rheumatology team was abysmal, where as my new
Physiotherapist is awesome & is as ‘special’ as me. She really wants
to help anyway she can & so seems to have invented a ‘pick a mix’
method to treatment.
I apologise for any rambling, this post was written over a few days & a more coherent service should resume shortly………….
……………But no promises ;)