Tag Archives: Chronic

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

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When It All Gets Too Much



http://www.sickoflupus.co.uk

Hiya! 

How are you? 

Sorry for the lack of blog posts recently but I’ve been really unwell. You know how it goes; you take your meds, you take it easy and you still end up collecting every ailment under the sun. 

I felt compelled to write today. I feel like I’ve used up all my chat allowances with family and friends but I still have so much weighing me down. (Insert steroid weight joke here)

In the previous post I wrote about my first session of Rituximab. I’ve since had my second and final (for now) and so it’s a case of waiting to see if it’s been successful. I’ll write about part 2 soon incase you fancy a read. 

Ok, with that out of the way, let me get into it…

For a really long time, I’ve been feeling like I’ve been watching life go by from the sidelines. At work, with friends and family and even alone, I’ve been feeling absent minded and like I’m in a permanent daze. My cognitive function is horrendous at the moment. I’m forgetting things and struggling to get sentences out without slurring. My mind just feels too tired to function.

I don’t think I’ve ever truly come to terms with my diagnosis and as I’m getting older, I’m struggling more and more with it. I feel numb most days and then out of the blue I’ll remember that this is my life. I’ll panic, spiral into low mood and have episodes of anxiety and then depression.

Since the chemotherapy, I’ve been more fatigued then usual. I’m completely useless within 4-6 hours of being awake. I’m also reminded that I need to rest and although it’s for my own good, it’s beginning to drive me crazy. 

I feel so empty at the moment and I’m genuinely watching the world pass me by. This is the scariest feeling ever and I know that most people with chronic illness feel the same way. It’s genuinely heartbreaking when you have to live within the prison of your illness, when others have the luxury of health and therefore freedom. When I describe it as heartbreaking, it physically aches to scroll through your Facebook or instagram and watch everyone simply ‘live’ and they don’t even know how much of a gift it is to not be held back by your own body. 

It’s extremely hard not to become consumed by negative feelings. I always have a smile on my face because none likes a Debbie downer (sorry to all the Debbie’s out there!) but more so to convince myself that things are ok. This facade is completely exhausting!  



I need to state that I have so much to be grateful for and I have a great deal of happiness in my life but the feelings I have towards my illness are starting to overshaddow the positive. 

Right now, all I can see ahead of me is a life that I never wanted. In my mind, I am still the hardworking, ambitious and motivated girl I was pre-diagnosis. Whereas in reality, there were days last month where I couldn’t feed or dress myself. I couldn’t even push the pain pills out of the blister pack! Isn’t that ironic?! I want so much more for my life and not for nothing, I bloody deserve a life where I exist on my own terms. We all do! 

Right now however, it’s out of my hands. Try as I might to live with optimism and a positive outlook, the Lupus monster is in total control. Im waking in pain which means Lupus (and Fibromyalgia) dictates the fate of my day before it’s even started. Trying not to feel depressed is like not being able to swim and trying not to drown. Almost impossible. 



With chronic illness, you have a lot of time to think. I may be wrong but I’d say you think about the past, present and future more than the average person. You think so much about how you used to be, you’re consumed with the right now and you worry about the future – how you’ll be and who you’ll be. 

Right now I’m desperately trying to get through this fog and find happiness in the things I used to. It’s easy to ruminate and though this solves nothing, there’s little else you can do. 

I’m sorry this post wasn’t an uplifting one but you probably guessed it wouldn’t be from the title! However, I hope that it’s been somewhat insightful whether you have Lupus or you know someone who does. 

Thanks so much for reading.

Til next time, XOXO

http://www.sickoflupus.co.uk