It's been a while since I've posted anything mainly cause I've been in the worst possible place since this whole stupid illness started.
That place has mainly been my bedroom. My bedroom is at the front of my house with a gaping big bay window for all to see in but these past two months you can't see past the layers of blinds and curtains that have remained closed and I've developed an unhealthy obsession with Prison Break.
The only reason I seem to have left my home is to visit a doctor or therapists or for a blood test. If they had a loyalty card I'd be on my second or third this year. I'm not sure what you'd get for having been so many times, maybe a fast pass to the front of the queue on busy days? Although I wouldn't need that I think me and mum have the timing cracked.
Well, at the end of September I went to Florida again, but this time we took a little extra baggage in the form of my auntie and two baby cousins (yes Megan and Chris, you may be 15 and 20 but you will always be my baby cousins). As I knew what to expect with the theme parks and everything I took Julie (my trusty wheelchair). It's always hard work going on this type of holiday especially having to try please everyone and fit everything in so keeping that smile painted on and energy up as much as possible was hard work, not that I wasn't enjoying myself, the best place for me was probably the front of the biggest roller coasters and rolling through all the haunted houses at the Halloween event. Adrenaline really kicks in and for them few moments the pain and fatigue isn't the first thing on my mind. My cousin and boyfriend walking into a mirror getting chased by clowns is (if there is anytime I wish I had recorded something, that was it).
Even though I had rest periods and the odd nap I still felt totally drained when we finally got back home to England. It was expected but I thought it would last a week tops. Unfortunately nothing budged, not even a tiny bit and two months later I'm still recovering from jet lag.
I had my third lidocaine infusion a week after we got back but this time I don't think the lidocaine stood a chance against my body.
I had an appointment to go see the gynaecologist again not long after the infusion. To put it short, I'm now having keyhole surgery in the new year, I know (happy new year!!) to investigate endometriosis more and if that is the case, remove it hopefully, if not then hopefully they will find out what the issue is with my stomach. Also I have a new pain (lucky, lucky me!) in my stomach which after around 2 or 3 visits to the doctors a week since Florida they thought it was a stomach ulcer and after tests found out it wasn't so they'll have a dig around to see what's up with me there too during the surgery.
So now I'm still going back to the doctors through my imaginary revolving door which I should have there once a week. To try sort my lack of energy, cold sweats and mood with the odd blood test thrown in again, I think they just get a thrill from seeing me break down in the middle of the huddersfield royal infirmary after one too many tests and it taking its toll on me. Also where they take your blood is only open until 5pm and I'm only just waking up around then so I'm pretty knackered. My arms will end up looking like a heroin addicts only at least they get a kick out of it, I don't even get an answer.
I'm sorry I don't have much to say apart from doctors, blood test, hospital, doctors, blood test, hospital... But like I said, I've barely left the house, the only other person I've really seen apart from my family and my boyfriend is Ed Sheeran but even then I wasn't sure I'd make it. I'm so glad I did, if you haven't seen him live before I suggest you do. I saw him 2 years ago in a place called 'House of Blues' in Orlando, Florida which is about the size of the O2 in Leeds, maybe even smaller but it was the best thing ever! And I got to go onto the wheelchair platform and get the best view and be so close to the front (okay, there is the odd perk to being in the chair, but anyone would rather not be in it). This time we saw him it was like being back on the roller coasters and I found myself for the odd moment not noticing the pain or fatigue. Maybe I'll just have to follow him round like a groupie or live in Orlando for the roller coasters, either way I don't think I'll be missed in Huddersfield.
After realising that planning things to look forward to I've started to try plan events and trips away so I have something to focus on. I've filled my countdown app on my phone with so many things I don't know what hit me today. The reason I'm up writing this at 3am now is because I've lost focus now. It's weird because it just clicks on and off. One minute I can be so excited for Christmas and trimming up the house, wrapping presents, shopping, etc. but then the next minute like tonight I've just given up. I think tonight it's just hit me that what's after Christmas, the downer of having to pack it all away and then wait for surgery.
I don't know what I'd do if this surgery or the next trial medication or therapy works and I'm better. I still wouldn't have a life. It's hard because I've lost about 4 years because of this, I'm the most pathetic excuse for a 21 year old. I've also lost pretty much everything, education, job, friends, respect, social life, confidence etc. I can't just go back to 4 years ago and pick up from where I left off. Everyone's moved on and have their own lives to think about.
I suppose we'll just have to wait and see. I don't want anyone to think I don't want to get better, but I'll admit that I am scared about what to do or what happens if I do get better. Something could just click, I may have luck on my side for once and be magically offered the lead role in a blockbuster movie. I can only dream.
Also thanks to Olivia for sending me my favourite flowers to cheer me up!!