Feb 2017 update


Ok so its time for me to start updating everyone on what is happening in my life at the moment…
First and foremost the reason as to why I am NOT blogging… I AM EXTREMELY TIRED… I work from 8 – 14h00 daily and when I get home I get in bed and that is the end of my day… I am supposed to take my next batch of meds at 14h00 but I can honestly say that most of the time I feel too sick to take it… the water retention tablets makes me feel more nauseous and tired… so it doesn’t work out too well when I take it when I feel sick already.
Let me explain a bit more about the tiredness… I wish I can let you experience it because I don’t think words will do justice to the feeling…. So I get to work and I’m on it… going like a boing and rocking my desk and pc… in between I’m in and out of the bathroom because I just took my water meds… it’s not a nice way to work… the best way to explain it is me finding the cleaning lady in the 1 cubicle cleaning… when I’m back for the next pee session she is still in the bathroom still cleaning the same cubicle… ask no questions and hear no lies… J… so I am attending meetings and trying to do my work whilst dealing with the after effects of the medication… headaches and nausea being at the top of the list…
I don’t get a lunch break so I eat and work… by 14h00 I am very very tired and my voice is crackly… I am tired to the point that I am stupid… its an effort for me to drive home… I’m tired from head to toe… literally… just to put it into perspective… I have been very close to road accidents in the last few months… I’ve been very lucky that the accidents didn’t happen, but it can all be attributed to the fact that I and deadly tired… I don’t look and do things properly… people drive up to me and yell at me… I almost caused an accident and all I can do is apologize… I’ve got nothing else to say… I don’t feel like explaining how I feel… I can’t even remember what just happened… I wasn’t there… only my body…
I know it all sounds bizarre but I promise you this is my life… I can also tell you that its hard living this life… it takes all the strength in my body to keep on and not to give up. Then you get insurance companies that want to mess you around… then they want this and then they want that… not realising the tremendous amount of energy it takes to get through a day.
When my colleagues ask me if something is wrong I tell them that I am reserving my energy… I’m trying not to talk because I just need to ensure that I have enough strength to do my job… im trying to work sparingly with my spoons…
Ok I think I completely forgot what point I was trying to make… like I forget to change my shoes in the morning and come to work with funny shoes… or the fact that I am getting into trouble regularly at work due to forgetting to do things… there’s a whole lot of things that I am not doing right in my life because I forget small things… I don’t activate my alarm at night… I don’t lock a door or my car(or I think I did)… I am frantically trying to clear the thick-headedness in my head, but no such luck… I print and reprint and print things over and over… I forget stupid words… lets take the … … … that thing… IT’S A ELEVATOR… OR A LIFT… I just cant get to the stupid word… or I use words that doesn’t make sense… put the clothing in the bin or in the fridge… I am totally not making sense and it frustrates me a lot… I want to scream because I like being on top of things, I don’t like sounding stupid or not making sense… I feel like im slipping away and it hurts… it makes me feel tremendously sad… so stripped.
Everyone grow in life… better jobs… nicer dreams and goals… more pay… ME… well im going back… ive got half a job with half a pay and I can only dream for today… I don’t even think that I can fly or go away to another continent because who’s going to look after me… people move and go places… I went back to my parents house…I can’t tour my own country because I can barely walk to my car… IT’S THE PITTS!!!
THIS isn’t life and this surely isn’t living… so yes im dealing with a lot and im trying to handle it with grace and poise… but yes the tiredness are the main cause for me not writing… the piece took me a few weeks to write… when im home I cant lift my hand and arms and type…
I would love to be an inspiration to the Lupus community, but every day I realise the importance of me living MY life first and foremost… so that is what I am doing… im trying to fight and have enough energy to look after my kids and work for money…
Things got to the point where I am seriously considering NOT running the NPO for Lupus SA… its just taking so much of me that I can do nothing for the NPO for days on end and there’s nothing I can do about it… I need to ensure that I am there for myself, kids and work… thereafter it’s like please take a number… I’m fighting and it’s so hard…

Nothing changed financially… I opted to put tenants in my house… to help me pay my bond… I’m selling my stuff to survive… and I don’t have a problem with that… this is how it is at the moment… I am still printing leaflets and I am still posting on our FB page to keep everyone updated and informed…. That is the best I can do at the moment…

Yes I do hope and pray that I just wake up from this nightmare… yes I do wish that I didn’t have to live this life and see what I saw and see the true nature of certain people… but its not all bad… so I count my little blessings and I look the other way if possible…

How do I cope?
I look at my kids and I know that I have done 2 things right.
I have the most amazing friendships and I vent, offload, scream and cry without being judged.
I go to work and I realised that I am able to contribute to the economy, not on the same level as before but I am able to do a something… it does wonders for my soul… for me…
I allow myself time to cry and be sad… I look at my life and I feel sad, I look at my house and all the things that needs fixing… I look at my bank account and yes I can cry…
I am so happy to wake up in the morning because I know how I felt before bedtime and during the night… I’m so happy to be alive and to see my loved ones…
I only take it one day at a time… no more
I am selfish… I will do things for ME… I look after myself
I try to rest when I can
I take my medication
When I feel really really bad I make a point of putting make up on and have my hair sorted
I try to reduce my stress by not worrying over things I cant change

Kind IMG_3623


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