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