September 2016 update


 

Sooooo… its been so long that i don’t know where to start…it seems as if i don’t even know how to express my feelings anymore…crazy i know…

OK so we’ve moved back months ago and its been super duper bliss!… i am happy the kids are happy and yep… i haven’t even been hospitalised once… touch wood it stays that way…

Its literally took me weeks to write this blog, every time i will right a little bit and save it… lol… if it wasn’t cramps it was shear Lupus related issues… pain, pain and more pain…

What i find most challenging is the day to day things, all of a sudden i am responsible for everything, and i mean everything, from broken light bulbs to my own bond… flat tyres, broken things, leaking roof, by the time i get into bed which can be anything from 18h00 to 03h00am…

Things are falling by the way side at the moment and i don’t expect it to change, this is just the nature of my disease… i start banking transactions and i don’t finish it because i forget or someone interrupts and its all gone… ive got so much maintenance that needs to be done in the house that its overwhelming and im not even touching the financial side of things… the roller coaster ride is still in full swing…

I knew i have a big shortfall before we moved back and ive managed until now… now i need to step it up a notch… i need serious changes in order to survive on my own…

Its been horrible dealing with the emotions… trying to forget why we are back home is impossible… trying to go back for a visit… impossible too… so much damage have been done and it will never be undone…

Ok to be fair lets start in May… there was a lot of unpacking to do and with the help of my super duper friends 90% of the packing was done in no time… thats when the search for things began, lol… i couldn’t find a single thing… next time burn all the boxes so that you have nothing to pack…

The kids are all sorted by means of a school taxi that takes them to school and back and it helps a lot… now its back to doing our own cleaning and washing, etc.

Because i need to take medication after work its impossible to make food, so ive arranged with a family friend to cook for us… i buy the food and drop it off and pick up the ready made meal… we are suppose to have people cooking, but that didn’t

June and July wasn’t any different… me trying to avoid any form of situation didn’t make things easier… but i just couldn’t get myself to make small talk and chit chat when i feel so badly hurt…

Ive seen the doctor once in the last months and my next appointment is end September 2016… nothing really changed and i am still on the cyclosporine treatment… ive had quite a few sick days… the last days i was flat on my back once again… but im forever hopeful…

At work things are pretty much the same with me working only part of the day… the insurer came back after the occupational therapist report was done and the proposal was for me to only work half days and to go for physiotherapy…this means half salary and then i don’t want to get started on the financial implications with this change… i don’t know where to start… yes i am glad that things got to a point… its been long overdue… but what am i suppose to do now… i feel like a dog in a cage…

I am eternally grateful for all the support at work and from my friends, without their help i would have been long gone… this situation really test to the max and without people who have your back its very difficult to see the light at the end of the tunnel… i want to say impossible… i find myself having the scariest nightmares at night… i have been getting mouth sores that don’t go away.. blood pressure that is extremely low or extremely high which isn’t good news for my kidneys… and the list goes on and on…

Ive got so much issues that i need to address that i need to start getting on with it… i am very angry when it comes to my faith… i feel that my fellow brothers and sisters failed me… i am disappointed in the so called display of love… why is it so easy to show love to strangers when you preach to them but the people next to you in church you don’t see?… why should people that doesn’t belong to your faith bring you food, why are they the ones who visit you in hospital, calling you and sending you messages???… why do only some people know how to be a helping hand???…do they even care that i might lose my house if i don’t come up with a plan?…do they care about my kids, how they are getting to school, if they are fed?…do they know that someone is paying for my kids transport?…At this point in time i would like to say… DO NOT TALK TO ME… can you believe it?… i cant, but i am here, i am living proof…

I am struggling to come to terms with the death of my granny years ago and i didn’t know how bad my denial was… trying not to think about her death or about any thoughts of her wasn’t the right thing to do… i lost my mother… she was such a big part of my life, my pillar my haven my here and she isn’t here anymore… the one person who had my back comes rain or sunshine isn’t here to help me and i cannot let go of her… ive got her tucked safely in my heart and from time to time when the hurt becomes unbearable i will cry until i feel better… theres so much i want to share with her, so many answers i need, so much love i want from her…theres just no one on this earth that can replace her or even comes close to her… its a loss that i find difficult to deal with… my “ma” is gone…and i cry for her like my daughter use to cry for her daddy after we got divorced… i just want her back…im struggling to say goodbye…

Anger, disappointment, sadness, grief… not to mention Lupus, lol… this is my list… so it seems like i am going to be very busy in the months and years to come… ive got things to deal with… and in between ive got a household to manage…

Im afraid that all these issues above will rob me from truly living in the moment and from ultimate happiness… i need to address them and i need to ensure that i come out the winner that i am…the warrior that i am…

I still love to laugh… i enjoy reading but one page a week are the new norm… i am happy when my kids are happy… things change, priorities change and with Lupus your life change… i should not allow this disease to overwhelm me, to rob me of my life and my joy… i need to fight back… ive never had it so hard in my life… ive never struggled and fought so hard to remain sane and to keep on fighting…

Im bit tired and my head is pretty much all over the place… but when i am feeling better then things start to happen… i advertised my one room in my house and i am getting quotes to convert my garage into a separate entrance to generate income… i am selling Tupperware and Avon for a extra and when we don’t have enough money i don’t buy food for the aunty, then we live on noodles… i buy my meds first and if i need to skip then its the ones that i can afford to miss for a month like the vitamins… i go to bed early and i wake up for work every morning, i get to see my kids every day and for that i am very grateful… it makes me happy… we are together and that is all that matters…even though im surrounded by negativity and challenges i prefer to remain focussed on the positives…

I hope and pray that our lives will be blessed…

 

 

 

 

 

 

 

 

 

 

 

 

 

 


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