“Struggling” is an Understatement 


Hi all, 

So it’s been ages since I’ve written anything but I’ve been really busy being really ill.

My entire world revolves around illness now. I officially see doctors more than I see friends and I spend more time awake at night than I ever have before. 

It’s not just lupus these days; its fibromyalgia, depression, anxiety, insomnia, nocturnal psychosis and sleep apnoea. The lupus brings fatigue, headaches, chest pains, breathlessness, arthritic pain, inflammation, muscular pain, dizziness, sickness and brain fog. Strange thing is, I don’t think I’m really taking all of this in. I know that if I really sit and think about everything, I will break down completely.

Today I had an ultrasound of both shoulders because for the last 3-4 months, I’ve been having horrific attacks of pain, especially at night, in my shoulder. When this happens, it’s completely debilitating. I cannot lift my arm higher than a few inches, I can’t pull the duvet up onto me, I can’t reach for anything. I was convinced that I ultrasound would reveal a tear in the tendon or some inflammation but the doctor couldn’t find anything. When he told me, I could feel the tears coming but I didn’t cry, I pushed those emotions back  down, said “thank you” and I left. 

It seems that a lot of my appointments conclude like this. I have an amazing team looking after me but I feel like I go and explain what’s happening, plead for help dealing with the pain but it’s reiterated that I’m on the maximum pain medication. There’s nothing left to be done.

How do you guys deal with these everlasting flare ups? I’ve continued to work but I am finding my job increasingly hard. It’s a huge blessing that I love my job because the passion for what I do is definitely keeping me going. 

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