Hello! It’s been a while since I’ve updated you all – I’ve said it before but I haven’t really had any ideas regarding posts. That being said, I’m going on holiday later this month and I’m planning to write posts whilst I’m there. They will mainly be concerning how I’m handling the heat, as many of you have probably guessed that Lupus and heat typically don’t mix very well. But, I’ll be damned if Lupus stops me going on holiday!
I had my check up with my consultant earlier this month. There was a 4-month gap between this visit and my previous appointment, which is fine but Lupus is so unpredictable and changes daily that it’s near impossible to remember and tell him all symptoms I experience in between visits. I tend to highlight the most bothersome and most occurring symptoms to discuss.
All usual checks (those being: weight, blood pressure and urine) were absolutely fine. One of my first points to make was my headaches are staring to re-occurr again except there is a slight change, sometimes they aren’t particularly painful. They feel like a pressure – I describe it as feeling like the Red Queen from Alice in Wonderland with her huge head because it feels like my head is just swelling and could burst at any given moment. He asked how long this sort of headache lasted and I said it could be anything from an hour to a day. Aside from my Red Queen headaches, I do still get my ‘usual’ headaches that can be anything from mind to excruciating. A few weeks ago I had a migraine that lasted several days.
My next point was sleep, it’s becoming an issue. I told him I typically fall asleep fine, my issue is staying asleep…which made me look like a liar because I couldn’t fall asleep last night, I eventually went to sleep at 9am this morning for a grand total of 4 hours. He asked if there was a reason why I struggle to stay asleep, sometimes it’s pain but others there’s absolutely no reason for me to keep awakening. I told him it’s odd because I’m chronically fatigued, to which he assured me it’s a common issue with Lupus patients. We discussed treatments but he told me he would be hesitant to prescribe them because of the addictive nature of the medication, which I fully understand and accept. I admitted to sometimes using over the counter remedies, which he was fine with.
My final topic was holiday advice, at first he said don’t go…but then he gave me actual advice – things I already knew but I thought it would be best to throw it in there in case he had any other tips. I have to get a hat, wear factor 50 suncream and apply it often, drink a lot of water and to try Turkish watermelon…doctors orders, I’ll have to get myself the biggest wedge of watermelon I can find!
I didn’t have any blood taken at this appointment, I get it tested so often by my GP that it would have been a waste of time. All my blood tests are fine and I’m still tolerating the medication. He said although I’m still experiencing symptoms, it’s in my best interest to stay on my current treatment plan. It came across to me as a kind way of telling me this is as good as it’ll get. I’m at a point where I fully understand I probably won’t ever be symptom free, I just want it under control as best as it can be.
My appointments with my consultant have gone from 4 monthly to 6 monthly and that’s good news to me.