Over the Christmas holidays I had a nightmare with Lupus. It was super frustrating. I’ll give you a list of each joint I suffered with….

  • Fingers.
  • Wrists.
  • Elbows.
  • Shoulders.
  • Knees.
  • Ankles.
  • Feet.
  • Toes.


I’m honestly fine with that. It isn’t like I need any of my joints to go about my life, right?!

I had such irritating times with swelling and joint pain in my feet. My last post was about my trip to hospital with foot pain, this time the pain has been a little more manageable, but I better not want to walk anywhere! If I do need to walk somewhere, for example there’s that huge irritation when you get as comfortable as you can and then your bladder pipes up “ha! I let you get comfortable, now I need emptying!” followed by pure dread on your part as you know pain lies ahead of trying to hobble to the toilet.
I have complied a short list of my thoughts while in this situation:

– Wet yourself… (Your lack of willpower for this choice slightly disgusts and disturbs me)

– Sleep in the bathroom, on the toilet (mmm… Hygienic)

– bucket by the side of your bed (May as well just sleep in the bathroom)

– Adult nappies… (No thank you…)

– Pretend you don’t need to pee anymore. (You fall asleep waking up more desperate – abort this plan while you’re ahead, abort! ABORT!)

– Actually go to the toilet, but walk backwards so that you don’t have to step on the bad foot, you drag it or shuffle it along the floor. (This one works, I advise it. Just be careful where you’re going, it can end badly)

Obviously my lack of mobility is an issue, especially where my feet are concerned! In this situation I have learnt that it is just best to get into bed, close your eyes and fall asleep. I never have an issue falling to sleep with a flare up, I get exhausted so easily!

On the subject of exhaustion, I have not managed to stay awake for longer than 7 hours during anytime this week without a nap. While the flare ups have decreased, my ability to stay awake no longer exists. I wake up, I eat, I take my medication, I do something for a few hours, I get tired, I fall asleep… I wake up a few hours later, I eat, I can’t even stay awake to do something, I go back to sleep. Even on Christmas Day I struggled! I woke up, opened presents, went for a nap for an hour, ate, had another nap, woke up.

I must admit, I’m coping better now.
I’m used to dealing with it now. I’m getting accustomed to life as of my diagnosis and taking life at a pace that I can handle.


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