A typical day in my life

So today i woke up with painting plans, not major painting session, just touching up in and around the house.

When i woke up around 8h00 i felt fine, so i got my cup of coffee and i knew things were going to be ok if it stays like this. I’ve been struggling with a itch all over my body and the doctor gave me some ointment but it feels likes i need a 20L bucket cus its all over my body, i am covered in redness of the scratching. Usually i have a small breakfast so that i can take my pills which normally happens around this time, but today i didn’t eat anything, i just can’t get myself to eat at the moment, so i opted for a small banana and took my meds.

Within 15 mins i was back on my bed, first sitting down and then laying down. I started to feel nauseas, then the head ache and then the dizziness and then the overwhelming tiredness. Its a tiredness that i can’t explain, its from head to toe and even speaking is an effort. I feel drained, blurry, like i never slept last night. Because i know that i must always stay in fighting mode, i got up and went outside as the kids were getting ready to start paining. I was there giving them a few tips, maximum 3 mins and then i was back inside and back on my bed.

After i com posed myself i got up and went to the bathroom as the house needs cleaning and seeing that the kids are busy outside i thought it would be nice if i can clean inside, so i picked up the bathroom maths and put them in the passage so that io can start cleaning. I sat on the toilet pot for a minute and then proceeded back to my bedroom to sit on the bed. My head is just soooooo sore and it feels like i can’t think straight.

I took the laundry basket and put it by my feet so that i can slowly start folding. The folding motion was intense as i just don’t have the energy to lift my arms up, but i persisted and got the basket empty. On my way to put the towels away i swept the kitchen counter.

10h00 and I’ve moved the bathroom maths, folded up our washing and i wiped one counter in the kitchen. I decided to stay in bed a bit longer hopefully i can feel better for longer.

I realised that i was struggling so i started using my Dictaphone to make notes. I can’t hold a pen at this stage left alone typing on a keyboard. I know its going to take me a while to gather all my thoughts and when i finally post it might be wayyyy in the new year or close to the end of 2017.

I am back in bed and when i feel like i can stand on my feet then i am up trying to do something quickly before the wave of incapacity strikes again. How am i feeling when my day goes like this? I feel alone, i feel useless, i feel helpless, i feel sick, i feel cheated, abused, emotionally drained and totally lost. Funny enough these days are quite regular, its part of the disease and all i have to do when i am at work is plug in my earphones and try to focus as i don’t have anything left to give, its just me fighting to stay upright. Days like this is when i need to skip certain meds, like my Oedema (bodily swelling) meds, i don’t have the strength to run to the bathroom, the up and down is totally out.

11h45 kids are still outside and i feel a bit lighter on my feet. I started with the bath and when that was done i was back on my bed.

12h10 cleaned the basin and the toilet pot and tried sitting on the couch in the tv room but somehow it doesn’t work, this THING wants me flat on my bed with my eyes closed, so that the room can spin and so that my head can stop pounding. So i am back on my bed…

13h00 i decided to try and eat something because it’s worth a shot, maybe it will bring some form of relieve. I had a cheese and tomato sandwich and thought i felt bit better, so i swept the bathroom and mopped. The shower i can’t do today, that must wait and the wiping of the tiles too. I pulled the office chair into the passage and now i am using that to rest. Me sitting in the passage waiting for the bathroom floor to dry and resting on the chair, its working.

13h25 and i am back on my bed just to wake up at 16h31… i don’t know what went on in my house from when i closed my eyes. so as much as i tried to fight it, as much as i tried to not let it get to me, it did… there’s nothing and i mean nothing that i can do to kill this beast. I have to accept and do what i have to do and move on. It’s hard when you have things to do, planned to do things or have prior commitments, or just having to go to work… what do i do? The one moment i was telling the kids what to do, the next moment my son comes inside just to confirm something and i am fast asleep. Now that wasn’t planned, lol…

It’s like there’s a leak somewhere in my body and it drains out all my energy out of my body and im left with nothing. When i woke up i remembered i had to take my son to the mall and i couldn’t, i had to ask him to either cancel or look for alternative mode of transport as i wasn’t in a position to drive at all.

I remember this feeling so clear in my mind, it happened a lot before my Lupus diagnosis and i even have the scars and the witnesses to prove it. I burnt myself one day when i felt like this and i tried to help my daughter with a school assignment that involved making some type of sweet, my mind feels so blocked and non working that i couldn’t see what was about to happen, i literally burn my arm myself. The other time i drove into a ditch because i did something stupid, i was taking a bend in the road and i put m y hand through the steering wheel to reset my speedometer… my wheels couldn’t turn back and i couldn’t think to take my arm out as it was locking my steering wheel and i ended up in the ditch with my new tyres, 2 sliced and had to be replaced. And ive got so much more tales to tell… Lupus has been with me for a while no one knew…

When i got my diagnosis i remember feeling sooooo relieved… it was like the best news ever… i was at the point where i doubted myself and where i omitted how i felt because it was so erratic… mostly tired, therefore everyone who knows me know that i sleep a lot…

People look at me and i can read their thoughts, i can see it in their eyes and i can hear it in their whispers, i don’t look sick at all. On m y very very bad days i will fight harder to put on makeup, cus i don’t like looking the Lupus part. It’s my internal fight with my body it’s not for show and tell, or at least i would like to pretend that that is how it plays out.

Maybe this glimpse in my life explains my outrage when i am so harshly judged in the corporate world, my lack of understanding and their lack of empathy…

About Ash

This website is dedicated to all the men and women who suffers from any Auto Immune disease...Lupus is just one of them...the list is endless...we want to inform, educate, motivate, encourage and change the perception of the world that Lupus doesn't exists...We are real people and we fight for our lives every single day...#LupusLove from Lupus Warriors