A New Kind of Fatigue 

http://www.sickoflupus.co.uk

Again, sorry for the huge gap in between posts but illness has completely taken over. I did however really want to write about fatigue. I’ve definitely spoken about fatigue before but recently, it’s been something I can barely cope with. 

To those who have never experienced fatigue, I imagine they think “oh it’s when you’re really tired” BUT it’s so much more than tiredness, lethargy and lack of energy. For me, it feels like an elephant is sat on top of me and I’m trying my best to get up but I can’t. It also has me in a permanent haze where I feel sleepy and my legs feel too weak to carry me. I’ve described it before as feeling like you’ve done a full day of work, you’re getting ready to go to bed and as soon as you get into bed, it’s time to get up and start a new day – with jet lag! It’s completely debilitating and I’ve had a consistent battle with fatigue for atleast 6 months. 

My history with fatigue has been that I wake tired and I’d struggle during the afternoon with tiredness which would remain until I went to sleep. Lately, I feel fatigued to the point of tears for atleast 80% of my day and I simply can’t function like I used to. I feel demotivated every day and overwhelmed by things that used to be easy. Below are a few examples of what’s been going on…

Showering: it’s a real task and I didn’t realise that this was normal until I found this image.. 

I get really breathless anyway with lupus and this combined with what should be a simple task is actually so hard. I always find myself resting my head against the wall tiles and closing my eyes for a few minutes because I can’t imagine how much energy it’s going to take for me to get myself out. 

Shopping: I try to have someone with me because this is one of the hardest things for me to do nowadays. Last week, after arriving at the shops, I sat in my car for 20 minutes before I could even contemplate getting out of my car. I parked a few feet away from the entrance but the exhaustion was horrific. 

Work: I’ve had to give in and ask for assistance at work. I just can’t do the hours I used to because the pain is too much and I don’t have the the energy. This is really hard to accept because I feel completely defeated. Once my shift is over, I’ll definitely need to sit for atleast 10 minutes before I attempt to drive home.

Walking: forget it, I just can’t. I’m always looking for a bench or chair. A 5 minute walk will always feel like a mile. 

Clothes shopping: nope. Online only thanks. 

Sleep: oh the irony of being to tired to sleep! 

It may be the sleep apnea, it may be the fibromyalgia but I never feel rested after sleep. On my days off, it’s completely normal for me to sleep through an alarm and finally wake up close to midday. I’ll then rest all day and never actually experience a feeling of alertness or energy. 

Overall, things are really, really crappy and life is so hard. Atleast with pain, you know that there’s a pill you can take to help. There’s no treatment for fatigue. I get tired hearing myself say that I’m “too tired” and I’m also tired of trying to not look lazy but when your body feels like it’s shutting down, sometimes you have to listen to your body and just go back to bed. 

Thanks so much for reading 

XOXO

“Struggling” is an Understatement 

http://www.sickoflupus.co.uk

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.