Tuesday 02 April 2014
Back to work today and annoyingly I'm feeling
quite good. So I was ill all bank holiday weekend and now I'm back to
work I'm fine. Great. I'm a bit tired though, I couldn't get to sleep
last night. My brain was doing overtime. I don't usually struggle getting
to sleep so it was a bit weird. I reckon I finally fell asleep at about
3am.
Do you find that when you're awake really
late you feel like you're the only person in the world who is up? You feel like
EVERYONE is asleep.
I'm not sure why my brain was going mad.
I was thinking about all the things I'm going to do once I'm not
working... I want to decorate the entire flat (it needs it). I was
thinking about what I'm going to do with my time. Sami said I have to
rest for at least a month and then I can start doing stuff. I'm not sure
I'll be able to!
I've got my quarterly hospital appointment
next Monday and I need to write a list of all the horrible things I've been
experiencing since my last visit in December. It's gonna be a looooooong
list! I've decided to put the list on this post as its part of my life
with Lupus....
All the usual symptoms:
- Night Sweats - severe - pretty
much every night
- Fatigue
- Joint Pains (extreme
- occasions where I haven't been able to walk)
- Weakness - have been unable to
hold a a mug or lift things up
- Brain Fog/Memory loss
- Sharp pains all over
- Chest pains
Unusual and new Symptoms:
- Rash on my arm
- Rash on my chest - very sore
like sunburn
- Ulcers (extremely painful and
one that got infected)
- Dizziness (had vertigo the whole of January)
- Ear pain since January
(sometimes severe)
- Infections -
ear/throat/tonsillitis/cold/cough (one after the other)
- Symptoms of a kidney infection
but no actual infection
- Fevers
- Painful sores in the corners
of my mouth
- Anxiety including a panic
attack
- Joint pain EVERYDAY
- Weight loss - without trying to
Things to discuss:
- New medication - current meds
clearly not doing their job
- I feel like I've been in a
flare since November/December. The past few months have been the
worst time I've had since being diagnosed
- Giving up work - lupus and
benefits
- Lupus groups in London
- I have a letter from my first
ever Lupus doctor where she states I tested positive for anti-bodies in my
blood called Anti-Ro and Anti-La. These cause difficulties in
pregnancy. Apparently they can cause heart defects, slow growth and
neo-natal lupus. However, when I saw the lupus pregnancy doctor in
December he said I tested negative for these anti-bodies but did test
positive for Hughes Syndrome (sticky blood) which causes miscarriages and
problems conceiving as well as a high risk of blood clots. Which one
is it? Hmm? Because that is very confusing.
Writing that list makes me realise how awful
its been. Shit man. Sometimes I do wonder how I remain Sane.
Well sort of sane. I guess you have to remember there is always someone worse off than you are. Just make the best of what you do have, appreciate the small things and don't take anything for granted. God what I wouldn't do to have my health back. When you are a healthy person you don't realise how lucky you are. Just to wake up and not be in pain or feel like shite. It seems so alien to me now.
Wow I dunno why I'm worried about what I'll do when I give up work - it's almost a full time job keeping track of
all the symptoms and trying to educate myself.
I have seen various GP's who have no idea
about Lupus, the medications, the side effects or the symptoms. Its
scary. I regularly read about it because I tend to self medicate. I
know when I need more or less of some of the drugs I'm on. I can't rely
on doctors because they really don't know enough. It is such a complex
disease. If you are reading this and are newly diagnosed, please educate
yourself as much as possible - that is the best piece of advice I was given.
My consultant at St Thomas' Hospital is the
only person I trust when it comes to Lupus and I trust him with my life -
literally. He is wonderful.
Well, wish my luck at my appointment.
Hopefully I will be given some new medication that will relieve some of
the symptoms and give some quality of life back because right now I feel like
I'm just existing rather than living.
Right best get back to work now. 3
weeks to go.
Thanks for reading.
Faye xxx
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