I haven’t done a diary entry in a while, mainly because I think they sound repetitive and I don’t want to bore anyone. However, the symptoms I experience are repetitive but I’ve had some ‘new symptoms. I decided to compile the whole month of March into one post to make it easier.
5th March: I fell down the stairs and from the bruise you’d think I’d fallen from the top to the bottom but I actually fell down the last 3 stairs. It bruised and lumped up pretty quickly, thanks to Aspirin. The bruise is nearly gone but you can still faintly see it, the lump is slightly still there too.
6th March: I went to see Olly Murs in concert. It was my first concert since diagnosis. Ironically in April 2015, I went to his concert and that was two months before I started showing symptoms of Lupus. Anyway, back to the point, it was amazing but I definitely felt it. I took painkillers before the show started but towards the end I needed some more. My ankles swelled and I ached from head to toe, I was exhausted and I had joint pain in my elbows and knees. Luckily my best friend and I stayed in a hotel around the corner from the arena so we didn’t have to have a long journey home. 7th March: The day after the concert I was aching, tired and generally sore but we knew he had another show that night so decided to head back to arena to try and meet him. Long story short, we saw him get out of his car but his manager didn’t allow him to come over. Once I was home, I’d hit a brick wall I was exhausted, aching, had joint pain, a headache…you name it, I had it. I spent the evening in a hot bath and relaxing in bed to recover from my busy two days. At least I now know how concerts affect my Lupus.
25th-26th March: I took my lovely Mum to York to celebrate Mother’s Day. We spent Saturday wondering around the city centre shopping. It was beautiful weather that didn’t affect me too much, when we first got into the centre I could feel a sun induced headache starting so I quickly took Paracetamol and Ibuprofen. By late afternoon/early evening, the sun started to go down and Raynauds kicked in, its weird how I spent the day walking around with no jacket and by early evening I had my leather jacket and gloves on. I was completely exhausted by the time we got back to the hotel so we stayed there for dinner. Once we were in our room, I put the TV on as I was getting ready for bed but it said Pirates of the Caribbean was on next…here’s the problem, I love Pirates of the Caribbean. Despite being tired, we watched it…we had too, its Jack Sparrow! I struggled to sleep that night as I had horrendous pain in my back and sides. It started so suddenly and came out of nowhere…like most symptoms of this illness.
On Sunday we went to the York Castle museum and wondered around the centre again. I had very sore feet and my ankles were slightly swollen. I was achy, had joint pain and was pretty much exhausted. Once home, I had a hot bath and fell asleep. It was such a lovely weekend, full of laughs and smiles so that makes all the pain worth it.
A ‘new’ symptom I’ve been experiencing is a dull pain in my left leg, the dull pain is also accompanied by a dragging pain. It’s not constant and it isn’t excruciating but I’d rather it not be there. I’ve also had a cramp like pain on the right side of my neck and today it’s quite sore to the touch.
Something not new to me is dry eyes but this month my right eye had suddenly got a lot worse. My eyes usually feel like there’s sand stuck in them but this has felt more like a stone. My cornea was a lot redder than the left eye, so I thought maybe I had the start of Conjunctivitis but it wasn’t weeping – in fact it had no moisture at all, it was completely bone dry, so I knew it wasn’t that. My next thought was my Sjogrens Syndrome had got worse, but why is it only affecting one eye? My mum said I could of scratched it without noticing, which is probably correct as I do itch my eyes a lot with them being dry. It seems to have settled down now so I’m going with the scratch theory.
This month I’ve suffered a bout of insomnia, which in turn makes fatigue a lot worse. One night I didn’t fall asleep until 4am and even then it was broken sleep. I had to take sleeping tablets in the end.
My blood tests for Azathioprine moved to 6 weekly, but I noticed that was wrong and they are meant to be 4 weekly. I spoke to my nurse and they have been rescheduled for every 4 weeks.
I’ve had my usual symptoms this month. I get some degree of joint pain everyday, usually in my elbows and knees, I’ve had fatigue (like always) and headaches. Today my joint pain is in my left elbow and I ache a lot. I can feel a headache coming on, so I’ll try and block that.
I think that’s everything for the month, I feel like that was a lot to get through! Thank you for reading!