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
- 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
- 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.