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The Lupus Awareness Month Diaries: Day 3

Day 3

Today has been a good day! (ish)
I’m feeling much less fatigued today which is amazing. On the tired scale, I’d say I’m at a 5/10 compared to a 10/10 that I’ve been experiencing lately.

I had the day off today and so spent most of it out with my mum. She’s self employed and so I’m really lucky that I get to spend time with her. She’s also my carer but it’s great doing normal things instead of patient/carer things!
I’d be curious to hear how you guys handle daily life? Do you have people around to help with things? Leave a comment below if you want to share.
Also, visit for more advice about dealing with Lupus.

Around midday, we went for lunch and did a bit of shopping. I say shopping but I don’t really enjoy shopping for various reasons. Firstly, I’m much larger than I was pre medication and I battle with that. Secondly, it’s so tiring and it’s a lot of walking! (statements like this, I never thought I’d say! I used to LOVE shopping and LOVE walking but these are high energy activities nowadays)

I laughed a lot today and laughter is so therapeutic. With chronic illness you can be very up and down. I try to be a happy and optimistic person and I also keep a lot to myself so even if I’m depressed, I keep that in. It’s such a relief when you are genuinely happy and not just putting on a brave face.

We went home a couple hours later and it’s a relief to go out with people who understand your limits. I often use the sand in an hourglass as a metaphor. Basically, once I decide to start an activity, I turn the hourglass and I’m on a time limit. Once the sand runs out, I’m done. There isn’t a reserve stash. That’s it. Sorry.
On the rare occasion that I feel up to doing more, I can choose to turn it over again. Hope that makes sense?!
I do love a good metaphor!

I really hope you are enjoying these diary entries. As I said before, I’m writing each day during Lupus Awareness Month because a day in the life of a Lupie is always different to the next. If there is anything you’d like me to talk about, please feel free to ask in the comments below/comment on twitter or the Facebook page.

I’ve stopped trying to predict how I’ll be feeling from day to day but it would be lovely to have another bearable day tomorrow. Here’s hoping!

Thanks again for reading.

The Lupus Awareness Month Diaries: Day 2
Day 2:

So yesterday I mentioned that fatigue has been a big issue recently. Today was no exception.

I was surprised that I was able to fall asleep pretty quickly last night considering that I’d slept during the afternoon until early evening.
However, at around 4am I woke from a terrifying nightmare and I couldn’t relax afterwards. The break in my sleep didn’t do me any favours and I’ve been totally useless today.

I used to be a very active person and even after 10 years of living with Lupus, I still struggle with the reality that I am unable to do even half of what I used to.

This doesn’t mean that I don’t try!
Today I wanted to cook breakfast for friends and then go with my goddaughter to her ballet class.
I managed to complete the above but I had to go home instead of going out to the toy shop with them. I was invited to go out with them again later in the afternoon and believed that I could manage a few hours.

I threw on some makeup in an attempt to look less zombie-like and chose to get a bus so I didn’t need to drive. I met up with my friends but the fatigue monster took charge and put a stop to my plans. I got back on the bus and went home.

I personally feel more hurt than anger when things like this happen. I get upset over losing control over my ability to lead an active life and try as I might, I physically do not have the energy to complete the tasks that everyone takes for granted. I’m literally talking about taking a 5 minute walk from point A to B.

Fatigue is a very difficult concept for healthy people to understand. How do you deal with fatigue? Do you struggle to define fatigue to others? The best way I’ve been able to is to say it’s like going to bed at night and getting out 60 seconds later to start your day, whilst wearing weights on your arms and legs and having extreme jet lag all at once. And this is everyday.

Lupus is so unpredictable and this is one of the hardest parts to deal with. Tomorrow’s post might be the polar opposite (fingers crossed) but I wanted to share the most honest account of my life on a daily basis. Hope today’s post hasn’t been too negative!

Til next time!





The Lupus Awareness Month Diaries

Oh hey!
I’m glad you’ve found us. Welcome to Sick of Lupus.

I’d like to first clarify what ‘Sick of Lupus’ is supposed to mean. Please don’t be offended by the term ‘sick’. Yes, Lupus can make you very sick but our name refers to being proactive and facing the illness head on. I am sick of having Lupus but our aim is to spread awareness and we wanted a strong statement to support our mission.

Okay, onto the blog. Today is October 1st and this marks day 1 of Lupus Awareness Month in the U.K.

To coincide, I will be posting daily diary entries to show how varied life with a chronic illness can be. I hope you find them interesting/helpful/entertaining.
I just wanted to share my stories with you and to record the daily events of a person living with Lupus.

Quick disclaimer; I am not a medical professional but I am an expert in my personal illness. Please feel free to take what you need from the blog but always seek medical advice if you have any concerns about your health. Each person’s Lupus journey is different and just because I have a certain symptom/experience, it doesn’t mean that the same thing will happen to you.

So without further delay, onto the diary:

It’s Wednesday and it’s 3 days since I last worked. I try not to work more than twice a week because it allows me to pace and plan and try to maintain a healthy work-life balance.

I woke up at 6am and went straight back to bed. I finally got up at 9.45am.
When I say I got up, I took my pillow into the living room and curled up on the sofa.

I had to pass on an invitation to go out because I was just too tired. I knew that working 3 days in a row would be hard but I didn’t anticipate that 3 days later, I’d still be paying for it.
The fatigue today has been so intense that I tried to brush my hair and
I only managed to brush one half, leaving the other half a curly, frizzy mess! Safe to say hairdressing isn’t in my future.

I gave up on the hair brushing attempt and curled up on the sofa again. I’m not exaggerating when I say that today I’ve watched atleast 6 episodes of ‘Say Yes To The Dress’ on TLC!

Annoyingly the fatigue got the best of me and I fell asleep before finding out if Meagan from LA did infact say Yes to the dress…

I slept until early evening and now I’m worried that I’ll have problems sleeping later. I really hate that. On the plus side, the pain today has been bearable and I remembered to take my medication on time!

I’ll let you know tomorrow if I managed to sleep so stay tuned!

Goodnight folks xx