Day 9 of 21…

1f6242741812816aa31e30309d9e85a5They say it takes 21 days for a habit to be created.

I don’t know who they are but I’ll test that theory out for myself.

On 20th March 2017, I had finally started my weight loss journey. One that will hopefully bring me joy but answers as well. You see people so easily blame chronic illness on weight and now I want to test it for myself. I want to see if a lighter me would have fewer health issues.

And so as I write this post I am on day 9 of 21. I am sore, I am exhausted and I am praying for strength.

I have to push through constant pain and fatigue to see whether losing weight really is a cure. While it may bring in happiness for me, I am praying it brings in good health as well.       fa3a5624849fb4384dc0ae55ed5dc77d

 

 

So fingers crossed it all works out.

How is everyone doing? How was March for you?

 

 

 

Until next time 🙂

#RareWithAChance

 

The shopping mall…

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Why can’t I just leave home with a handbag filled with all the things 20-something girls usually carry around?

This was the question that floated around in my head while I was packing up my trusty backpack. As I threw in my bottles of medication, emergency contact details and all that emergency details I sighed. Not a moment later my dad called me to their bedroom ” Can’t you find someone to go with you tomorrow? Like a friend ?” mom asked and so I had to explain that all my friends were busy according to my knowledge.

Usually, my sister would go with me but she just had a knee operation about a week and a half ago and my mom was taking her to get her clips removed. Dad was working so he obviously couldn’t go. So I opted to go alone knowing that my dad worked nearby in case I needed him.

The mall is busy on a Friday but my mom’s birthday was coming up and I had to buy her birthday presents as is tradition. I also had to sort out a few personal things so I had to go while I had the chance.

I was there a good few hours, and after the first hour I knew I had made a mistake but I put on a brave face and got my things done. Then I had a small meal where I finally sat for a long while.

Needless to say, 5608eb2b0a546e59909a8a74546f856dI knew doing normal everyday activities take up more ‘spoons’ for the chronically ill but I didn’t think it would be this bad.

I am in no rush to go to the mall anytime soon. I needed 48hours of rest to make up for lost spoons so I think I’ll do things at my pace…

 

What ‘normal’ activities make you lose tons of spoons? Are you a fan of the mall?

 

Until next time 🙂

#RareWithAChance

 

Just because it’s not Cancer…

 

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In 2011 my late grandfather was diagnosed with lung Cancer, none of us knew how far along it was but judging by his physical appearance it was clear to us that he wouldn’t be around much longer. People visited him, prayed for him, showed him both sympathy and empathy. But my grandfather smoked like a chimney, he’d have about 25+ cigarettes a day. Yet he still got all of this understanding from people.

In October of that year, we rushed him to the ER and practically saw the life drain from his pale, tiny body. 20 Minutes later after they had stabilised him we heard the heart monitor and we knew he was gone. The week leading up to his funeral was okay but it wasn’t until I was carrying the coffin that contained his lifeless body that I realised he was gone. Realisation hit me twice after that, once while I was reciting a poem on stage in honour of him I had a little meltdown and again when I watched them lower his coffin as I stood by his graveside. To say I had an emotional breakdown after is an understatement, after a month of mourning I picked myself up and went on with life.

9 months later I was diagnosed with IH after 6 weeks of doctors visits. But I didn’t receive the same gestures my granddad did, I got no empathy or sympathy all I got was people saying:

” When are you going to get better now? “

” You know maybe you should try exercising “

” What are you doing here? You’re wasting your father’s money “

” At least it’s not Cancer “

And you know what it’s because of people saying inappropriate shit like this that I started thinking about this whole ‘ at least it’s not Cancer ‘ bit.

Please don’t get me wrong…

I support many Cancer foundations and I believe a cure needs to be found for this dreadful disease. BUT! Just because it’s not Cancer doesn’t mean the pain is less, just because it’s not Cancer doesn’t mean we deserve less sympathy or empathy. Just because it’s not Cancer doesn’t mean we struggle less or don’t deserve a cure.

Society needs to stop judging a disease on whether it’s Cancer or not. Just like Cancer patient’s, people with chronic illnesses did not ask for it. Just because it’s not Cancer doesn’t mean you have a right to give your unwarranted opinion about it. I mean I haven’t seen someone go up to a Cancer patient and say: ” Hey want to go for a run? Weight loss could help you. ” or ” Have you tried ( insert some ridiculous medical advice here ) yet? “. So what gives them the right to do that to the chronically ill?

So here’s my message to those people who’ve done this:

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Please stop judging my illness based on if it’s Cancer or not, please stop thinking my struggles are less because it’s not Cancer I have. Because while Cancer sufferers have it bad so do the chronically ill.

Until next time 🙂

#RareWithAChance

What does the future have in store?

Where do you see yourself in 5 years?

Such an easy question that could be difficult to answer when you’re chronically ill. So many people have asked me this question and those people could easily answer it.But when you are chronically ill you constantly live in the unknown. 

Let’s be honest. I don’t know where I’ll be in five years time. I could only hope that none of the following happens:

  1. I get a stroke or brain bleed because of my IH.
  2. My kidneys fail because of the side effects of my medication.
  3. I get a heart attack because of the side effects of my medication.
  4. I end up 6 ft under.

You see I fear the unknown but right now I am living the unknown. I could only hope that in 5 years time I’ll be in remission or that a cure will be found not just a bunch of ‘ ideas ‘ to try on patients again.

My hopes for the future: good health, happiness and peace. What are yours?

Unitl next time 🙂

#RareWithAChance

RARE DISEASE DAY 2017

There is not enough awareness about many rare illnesses, even though there are an estimated 350 million rare disease patients worldwide! This infographic from Global Genes provides many facts about rare disease as a whole. #CareAboutRare

via World Rare Disease Day 2017: Infographic — Finding Life’s Silver Sun

 

So many of us fighting rare disease often struggle to get our heads wrapped around it. If I’m being honest I completely forgot about this. Honestly, it’s been the longest week but it’s only Tuesday so obviously I’m not feeling well.

But in honour of myself and many others with rare disease please spread the message and let everyone know. Alone we are rare but together we are strong.

 

Until next time 🙂

#RareWithAChance

As if looking for love wasn’t hard enough…

When are you going to get a boyfriend? Why don’t you date anymore? You know when I was your age I was pregnant with my second child, don’t you think it’s your turn now?

Ladies, gentleman and anyone interested in what I blog about this is a part of my life! Everyone I know is either: looking for their life partner, engaged, planning a wedding, married or pregnant. Then there is me, Miss, forever alone. Tell me honestly: How many of you who are chronically ill find dating easy?

I have said this once and I will say it again: all the guys I’ve spoken to freak out and leave the moment I am honest about my health. And here I thought honesty was the best policy… Apparently not so much.

Looking for love or a decent relationship in the 21st century is already difficult. Add being chronically ill with a rare-incurable disease to the mix with Eczema & Asthma as an added bonus, and suddenly it becomes mission impossible.

So while I sometimes try to find a significant other I prefer to just leave it be. Because if I’m being honest it hurts more to be rejected for: something I never wanted nor asked for, something that is 60% of my life and that I can’t just stop as I see fit.

Yes, I’ve always dreamt of: walking down the aisle in a gorgeous white wedding dress, going on adventures with my future husband and having kids.But at what cost? So maybe one day I’ll find the person who is willing to deal with ALL of me, not just 40%. But until then romcoms is all I’ll have.

  1. Have you found your life partner? If yes how did you meet?
  2. What is one piece of advice you’d give to someone searching for their significant other? 

 

Until next time 🙂

#RareWithAChance

if-you-are-lucky-enough-to-find-a-weirdo-never-let-them-go

First Panic Attack For 2017

We all have our days some more often than others. Unfortunately for me, my day had come on the 14th January 2017 when I least expected it.

It was Saturday morning the sun was shining, my head was aching as usual and I thought it wouldn’t be a bad day with regards to anxiety. Haha turns out jokes on me.

I was minding my own business, I hadn’t showered yet because I slept in for the first time in months. I had to start on my Afrikaans work for University, so I moved into the office at home. That is when it started, my parents had gotten home early from their vacation. My dad had left all his files and paperwork on my desk with glasses and plates as well. I freaked as I tried to clear the office.

My head spun and suddenly I realised just how full our home felt. With years of junk, my parent’s were collecting and refusing to throw away the home that was felt big now felt tinier than my shoe box sized bedroom.

I wanted out, my sister couldn’t help me, I couldn’t help myself. I freaked out for the next hour on the verge of tears. So I did the only thing I knew would hopefully calm me down. I got in the shower, hot water steaming up the small bathroom and I cried.

You see the thing about panic attacks is, it comes when you least expect it. No questions asked it just happens and when it does there is no stopping it.

By night time I was in bed tossing and turning sleep only came at about 4 am, I woke up early thanks to a nightmare. But at least my anxiety wasn’t up there again, I had somewhat of a normal day after.

Hopefully the next time I post it’ll be something more positive enjoy the rest of the week.

Until next time 🙂

#RareWithAChance