I’ve been neglecting my blog and there are reasons for that. The first is, I’m struggling to write a half decent post – well, half decent to me. I have the post planned in my head but I can’t seem to get the flow right or find the right words. Secondly, as part of my aims for 2019, I joined the read 50 books in a year challenge. I thought I’d have given up by 1st February but in a twist of events, I love it and I’m still going strong. I believe at the time of writing this I’m on book 21. So, my lack of writing is a mix of brain fog and having my nose stuck in a book. I had my birthday since my last post, I turned 24 which brings me into my 4th year of battling Lupus. It feels a lot longer than 4 years but I have learnt so much and met some wonderful people who also battle chronic illness.
My 2nd aim was to go vegetarian. There has been claims that having a meat free diet can help Lupus and its symptoms. Lupus is a very individual disease, no two people suffer in the same way so I fully believe that a meat free diet has and can help people. I haven’t noticed a difference but that doesn’t dishearten me as I didn’t go vegetarian to see if it would help. I simply did it for my love of animals. I stopped eating meat on the 1st January and it has been the easiest thing I’ve ever given up.
I’ve already been on anti biotics and I need you to sit down for this next bit…it wasn’t a Lupus related issue, it was from what my dad commonly calls a ‘classic Emily moment’. I was boiling the kettle and as I reached over for the tea canister the kettle released steam and burnt my arm. I knew it looked a bit dodgy for a burn but I have a habit of letting things that need checking by a medical professional sit for days on end. Long story short – it looked dodgy because it was infected. I have since moved the tea canister to a safer area and I have a scar to remind me of the day my kettle betrayed me.
Lupus has been a little delight as always, it’s been giving me utter joy. My fatigue has been heightened since last month, its been at a level that makes the smallest thing seem like climbing a mountain. There has been days where it returns to its normal level but it quickly creeps back up to an unruly level. I struggle to describe fatigue because it goes beyond tired. It can be completely paralysing and it’s a devastating feeling.
There was a period last month where I had extremely bad all over body aches. I find that intense fatigue and body aches often couple together. It was horrendous, I couldn’t find a position to sit or lay in that helped or was comfortable. I forced myself on walks with the dogs to try and stretch my body out which I know makes it worse but it’s something I repeatedly try for some reason. The only thing you can do is wait for it to pass and it did. However, in the last few days the aches have flared up again. It’s not on the same scale but it’s still uncomfortable.
My joints have been sore which in the past week has really intensified. I’ve got through the days by taking codiene, paracetamol and ibuprofen one after the other. I put myself on absolute rest from Saturday to Thursday because my whole body was screaming at me to stop and stay still but being honest, I needed longer than that. It’s a constant sharp pain in my shoulders, elbows, wrists and knees. My knuckles are swelling up again and my ankles keep going puffy.
I have had muscle pain. It’s mostly in my thighs and upper arms, it’s a sharp pain, like I’m being stabbed over and over. It usually starts up when I’m trying to sleep…conveniently.
I recently went through a stage of feeling sick at random times in the day. I then lost my appetite and didn’t eat for 3 or 4 days. Loss of appetite happens to me so frequently that it no longer bothers me. It’s a bit like “oh well, there it goes again, I’ll sit and wait for it come back”, it always does, it’s like a boomerang.
I’ve had pain in my sides. This is one of my less frequent symptoms. It’ll show its face for a few weeks then bugger off. It’s a dull pain in my back under my ribs that curves to my sides…if that makes any sense. The main inconvenience is it can make sleeping troublesome because I can only fall asleep on my side. I’ve had it for about 3 weeks now so I suspect it’ll disappear as suddenly as it appeared soon enough.
For a couple of weeks I’ve woken with a headache, most of the time they’re intense. I had to cancel my blood tests on Wednesday morning because it was too painful to just lift my head off the pillow. I can get them to die down by paracetamol, ibuprofen and a lot of water but once the meds wear off, it returns at its intense level.
Yesterday I deep cleaned my room. In my head the plan was to do it over a week but we all knew that wouldn’t happen. I’m the kind of person who needs to finish something like that on the same day. So, in Emily fashion, I plowed through the room in a day. I have bruises, intense joint pain, my fatigue is soaring, my muscles hurt, I have a headache (again, I was getting them under control). It was possibly one of the worst things someone with Lupus could do. So, in short, I fucked up yesterday and I’m half dead…but I’m half dead in a room that’s never been cleaner…every cloud has it’s silver lining, right?
I wouldn’t exactly say I’ve had the greatest time since my last post but I’ve quietly plodded on…there’s not much else you can do. I’m going to try and get my head back into blogging, I do miss it and the escape it offers me to vent about my disease.