Monday 17th October, 2016.

I slept bad last night, for once it’s not Lupus causing poor sleep. My top and bottom wisdom teeth have decided to start coming through. Well, I say start but they’ve actually been coming through for a while now, it’s only now and then it causes pain. I woke up every couple of hours, the longest I was awake was 2am-4am. I eventually drifted back off when my next dose of pain killers kicked in. I woke up about 7.30am and decided to just stay awake. Tossing and turning eventually got dull. 

Given my bad night sleep I’m pretty much exhausted. I mentioned in my last post that I was struggling with fatigue and I still am. I just can’t seem to shake it off. I wake up and my eyes are burning, it’s like my body is begging me to go back to sleep. I have zero motivation for anything and everything just feels like a massive task at the moment. Although, I did go shopping with my mum on Saturday, I wanted to get out from the four walls that constantly surround me. I finally saw Alice Through the Looking Glass, Alice in Wonderland is my all time favourite fairytale…if you’d class it as a fairytale? I love it, and the Mad Hatter, he’s my favourite.

Since my fatigue has been bad, so has my appetite. I discussed my eating with my mum on Saturday whilst sat in a cafe, we both agreed I don’t eat nearly as much as I should. I just never feel hungry or feel like eating, sometimes the thought of eating a meal feels more like a chore. That could be the fatigue coinciding – too tired to sit and eat a meal. There is days I don’t eat at all, sometimes it’s nearer 2 days before I will eat something. Sometimes it gets to about 7pm and I remember I haven’t eaten yet and I’ll just eat something because I know I need food. Most of my calorie intake comes from drinks. I definitely think fatigue and appetite are closely linked. It’s a viscous circle, it’s common sense that food gives you energy, but what if you have no energy to eat or the thought of food nauseates you?

The last few days I’ve had a dull ache in my back, it’s not a major or crippling pain. I’ve decided the ache is too low down to be associated with my kidneys (kidney problems are common in Lupus). I think it’s more muscular.

Despite alternating paracetamol and ibuprofen every two hours for my teeth I still have a niggling headache. Niggling in the sense that it’s up and down in severity. It seems to be holding off most of my other symptoms, however, my knees have a stopping and starting pain in them.

I’m starting to grow nervous about my next consultant appointment, I have an ever growing list of things to discuss with my doctor. One thing is my skin, I posted a question in a Lupus support group asking if anyone else has suffered bad skin since diagnosis, they have! I’m glad that I’m not the only person, I tried researching this on my own but I couldn’t find any solid answers or evidence that Lupus can cause bad skin. Obviously I will mention my headaches, usually that’s his first question anyway. I think I’m anxious at the thought of him trying me on a different treatment, the next one is Methotrexate – if you look it up, it sounds like a horrible drug and I’ve heard it’s more affective in the form of an injection. I also think I’m anxious because as I’m in the waiting room, it’s really the only time I sit and think “woah, this gig is actually for life”, that sounds silly I know, because I obviously know my diseases aren’t curable. I don’t usually give the whole ‘it’s not curable’ much thought, maybe that’s hope that one day it will be, I don’t know. Between my appointments, I’m constantly making a mental list of what’s got better or worse, what’s changed or what’s new and over the months, it just seems to grow. 

My hair, it’s started to fall out again. I’m not particularly worried about it, I have quite thick hair. You might look at the picture and think “it’s not that much” but it’s still disheartening to see it fall out as I brush it. It’s like a bitter reminder that my immune system is screwed up. I’m just clinging to the hope it stops or doesn’t get worse. 

I’m holding up pretty good all in all though, just struggling mostly with fatigue and my appetite. I’ve rambled enough and need to sort my medication out. Thanks for reading!

*I can see how many times this blog has been shared by family, friends and friends of friends. I can also see how many people have been on here from Facebook to read my posts, I just can’t see who you all are! So I’d like to say thank you to everyone who has read and shared my blog. I truly appreciate it, you’re helping raise awareness which is why I started this blog in the first place. Thank you so much! Much love to you all – Emily xo* 

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