Soul Dose

Hello my friends

So here's the thing, I started souldose for one reason, okay maybe two. The first and most important was that I'm going through something strange, something that is cruel and has basically taken over my whole body, going through this thing made me wanna speak out and say to the world "whatever you're going through keep believing". My illness is making life hard for me but as I look at the people around me I realize it's even harder for them. So here I am, taking back my blog and in doing so showing my family and the world that I will never ever give up and I may have horrible days like these but from now on I'll control what happens on those days, I won't let them scare the people around me and I will keep the faith.

I won't lie, every hour is a struggle but then I start thinking this struggle is God's challenge, he's challenging my faith and he's giving me a task to go out there and tell the world to believe, tell the world that no matter how hard life is, giving up should be kicked out of each and every human being's vocabulary. The phrase "it's too hard" must not exist and everyone who is still breathing should be thankful and celebrate each breath.

I know there are no guarantees in life but I can guarantee that this will not rule my soul, yes it has forced me to stay in bed, yes I can't even say one word, yes I shake and shake uncontrollably 3 or 4 times every hours and yes I'm plagued with migraines more each day. This unknown and unexplainable illness has forced me into this life but it'll never take over my heart and will never ever take over my soul. My heart belongs to me, my family, my friends and Mr Man but my soul, my soul belongs to me and the man upstairs.

                                   Cheers And Stay Beautiful

When I got sick a lot changed and dreams were stolen, some were changed and some were still made available to me but getting them is one of those torments that I face everyday, when you want things but you know those are just wishes, you're dreaming with your eyes open and sadly your heart is just as open.......... Some of my dreams is having a baby.

For as long as I can remember I've known I wanna be a mother someday, I've had dreams of having 3 kids or even 4 kids that were gonna be knock outs. Yeah in my dreams I have the most beautiful bunch you've ever seen and they're hyper like their mother and they're cute and sweet.

Going back to being serious, motherhood is my dream and now I realize that dream might never come true. No, I know that dream will never come true and as much as I believe in accepting things the way they are this is the one thing I'm battling with.

I'm turning 26 next year February 4 and I've been sick since age 20 or 19 depending on how you look at it... When I was younger I told myself I was gonna have my first child when I was 24, so I made sure I didn't risk pregnancy before that. It was easy to avoid pregnancy because I was single most of the time, I was bad at relationships, my relationships were short (Maybe because my heart already belonged to Mr Man, so I compared every guy to him and they didn't match up). The longest relationship I had lasted a little over a year but only because I was in boarding school most of the time doing my Matric.

He guy was older than me so when he started talking baby talk without mentioning marriage I thought "Oh no no no, he's not gonna use me as some baby oven and then toss me, hell no" so I ended things. Come to think of it, the only time he ever said I love you was when he was asking me out. Ag enough about that pathetic part of my life.

As I was saying, I spent most of my time as a single girl, age 24 was my goal because I had no way of knowing this was gonna happen,I didn't know by age 24 I was gonna be bed bound and sick like this (if only we can predict the sucky parts of the future)... My motherhood dream is shattering before my eyes, I dream of the pregnancy itself, 9 months of carrying my baby and having that divine connection with him/her, of course the pleasure of making the father run up and down satisfying my every craving, the birthing classes, buying the baby clothes, preparing the room for my bundle of joy, then the delivery and temporarily hating the father for knocking me up, the feedings, ok not the diaper changing, the baby smell, rocking my baby to sleep (I wrote a poem about this)... I wanna have it all, the first word, first step, but wait we'll have the first time he/she sits by herself. What about first day of school,  I want that so badly it hurts just thinking the dream is dead.

Other things are easy to accept, others are easy to tolerate but this, this is the one thing I'm finding hard to get over and when I talk to my sister about it she says so what if you never have kids? I tell her 'those words are easy for you to say because you have one and you can have another anytime you want' I don't think most mothers can understand and everyone I've told this to hasn't expect Mom Ndu and we're in the same boat.

            Does anyone ever feel this way or am I just crazy? Am I crying over a small thing here?

It is very strange to hear about your life from journals, windows xp and from people, especially when half the stuff you hear sounds like it's taken from the pages of a TV movie script.. That's what I'm doing, I'm putting together the pieces and sometimes I have to take a break and try to wrap everything around my head because it sounds so unreal and tears my heart apart.. These past two weeks I've been feeling more sick then usual, so I spent them listening to more of my story from different people and I also started reading something I found in my flash drive, some sort of diary I kept from 2006 to early 2007. Today I'm gonna talk about events that took place after my coming of age celebration.

As a black South African there are beliefs we have, I can't really say I have them personally because I'm too big a skeptic but they are general beliefs. There are traditional doctors, there are people called Sangomas who are believed to be able to tell you about your problems and see what we mere mortals can't see, they know more about ancestors and are tight with them so to speak. And there's also a general belief that witchcraft exists. Now I DO NOT believe in witchcraft, I've tried to keep an open mind but no matter how much I try I can't buy into the thing I'm sorry.

By February 2005 my family had tried just about everything to help me out, we had knocked on so many doors and were willing to try everything because we had nothing to lose. And that's when people or rather traditional healers started to come up with different theories. We listened and did what they suggested, except when they gave me their concoctions to drink then I didn't do that. I couldn't swallow anything at that point anyway.

I was taken to a healer who claimed he knew who was bewitching me, he said my father should look at a crystal ball thing and would see the person. Dad looked and looked, then the healer gave my father a knife and said he should stab something so the illness can go back to the person who gave it to me in the first place. My poor father did it and the healer said I was healed... Only he was lying to us and dad said he didn't see anyone on the crystal thing, he said he went along with it because he figured we've got nothing to lose.

So we went home but the illness persisted and kept blowing up. I woke up one day and my feet were covered in huge yellow sores, my feet and halfway up my legs. They felt like they were on fire and if you put your hand close to them you could feel the heat coming from them. I cried and cried and mama would dip them in ice water and keep them there. It wouldn't help. The doctor gave me ointment that did nothing. I was in agony and the only thing to do was to pray it didn't get to a point where I'd have to lose my feet and then pray it went away soon.

Praying became our hourly thing, even the children learned to pray because everyone knew I could die any second. I wasn't eating, my left hand was rotting before our eyes, my feet were also rotting and on top of that my stomach problem had taken a whole new level.

One weekend, it was Saturday I woke up and my room was filled with crying people. Mama held my hand and I looked at her and mimed 'what's going on?' she said I shouldn't talk I should rest and then it hit me, I started shaking violently while pure blood came out of my mouth and everyone around me prayed and cried. My aunt (who suffers from heart problems) fainted and was carried out of my room and mama kept calling my name... That whole day was pure hell and listening to them tell me about it made me cry and pray I never go through it again or remember it.

All my close relatives were in my room that day, some were outside and others were in the kitchen and living room. They were all gathered at home because they believed I was dying that day, they had been called because I was so sick everyone believed I was not gonna last till the next day and even though my nurse aunt (she's the head nurse at her hospital) was there trying to give me medicine through injections and giving me supplements and what have you, she also believed I was a goner and like everyone else she was saying her goodbyes.

My family says I realized what was going on and asked for my brother. He was called in and the minute he sat next to me we both started crying, I asked for my phone and while he held it I wrote 'I'm in too much pain and want to die, it's OK don't cry' at that point he ran out of my room and I passed out.

They couldn't wake me up this time, mama was screaming at everyone to wake me up but they couldn't. My aunt felt around and found I had a faint pulse, she informed mama and then gave me something for the pain. She got me comfortable and they decided to take me back to hospital. I say back because hospitals wouldn't keep me for very long, they'd admit me and try to find out what's wrong, then they'd discharge me because they wouldn't find the problem.

By that evening God himself had smiled down on us, he had heard our prayers because not only was I alive but my pulse was stronger than ever and even though the illness hadn't changed, I was awake and the blood coming out of my mouth was no more.. The relatives started leaving with smiles on their faces and I was well on my way to seeing tomorrow;)

This happened a few months after my coming of age celebration and when I heard this story I thanked God for my amnesia, I'm glad I can't remember things like this and I believe with all my heart that God has his reasons for everything and what we think sucks might just be what we need to be able to live our lives.

I don't think day to day life would be easy if I knew everything and whenever my father looks at me and says "I never thought you'd still be here today" I see the pain in his eyes... And whenever I start the shaking it hurts and it's hell but I do know that one day I'll be running down the beach Pamela Anderson style and this will all the just another story on a blog, this too shall pass!!!

I slept a lot today, I got hurt emotionally and spent hours trying to forget but couldn’t, so I pulled up my covers and slept… I’m not good at crying, yes I know crying sometimes helps in relieving the pain but when I was young and was going through the experience that I went through I told myself no more crying, now I’m older and I do cry but not as much as I’d like to sometimes.

I’m sure you’re wondering what I went through when I was young because I keep referring to it and as much as I wanna talk about it I’m not ready. I’ve made a post once and saved it as a draft but deleted a day later… Something inside me keeps saying “girl you have got to talk about this, see how much talking about the illness has helped, surely talking about this will help as well”. Do I listen to my inner voice (which can be dumb sometimes) or keep blogging and taking it one day at a time? I think I’ll keep writing and taking it one day at a time, writing what my fingers are able to click on that day and letting tomorrow take care of itself…. For now I will tell you about the kleptomaniac in our mist.

Alright, we all know there are different types of people, some good, some bad and some floating in between. I have never been a fan of judging people and I try to keep my mouth shut most times (made a lot easier by the fact that I can’t talk anymore)… So I get hurt when someone purposely hurts me and does something I could never do to them, ever.

Today I was in my room as always minding my business, I was trying to come up with a secret language I could use to communicate with my nephew (This idea came from the wonderful Doraz who has an amazing blog Believe In Yourself, if you’ve never seen it you owe it to yourself to check her out trust me) I hope you're still willing to help D, I need ideas because I'm fresh out. Anyone else who has some easy and fun sign tips please tell me.

So there I was trying to create easy signs you can do with one hand because I can only use my right hand. My mother shouted she was leaving for work and I reach into this box where I keep my money. I wanted to give it to her so she can but a gift for Sbahle’s birthday. I had R630 in there which had been a “buy whatever you need” gift from Mom Ndu’s friend. I opened the box and to my horror I only had R30 left. Then I started thinking back, I remembered that I had last seen my money the previous day around 4pm just before the smoke drama (the house had started filing with smoke and gran could not see the source, she feared there was a fire somewhere). So whoever took my money took it during the fire drama when Gran asked Shivile to move me to his outside room while they tried to find the source of the smoke.

My heart just sank and mom tried to ask everyone who had been around at the time but we knew it was a waste of time and at the end we gave up… Here at Gran’s house money gets stolen a lot but it never stops being irritating.

(My Mr Man wasn’t even here and I couldn’t cry on his strong muscular ripped shoulder, ha ha ha. I’m kidding.) Hey a girl has to be a girl sometimes, lol.

I’m going back to my sleep now but I already feel a lot better than I did this morning, and writing really is great therapy…. Thanks for tolerating my rant.

Cheers and Stay Beautiful.

I'm tired, I'm so tired and I feel like a thousand bulls were playing tag on my body and running around on it

But I'm just glad my phone allowed me to post today, I wrote the first few words and saved, what do you know it worked. So now I'm back to write what's been going on inside my brain

I hate feeling like this, being too sick to even spend time with people but there's nothing I can do. I have this guy friend and he's the one person outside my family who has been by my side from day one, he's a true angel and my very own hero and if I talked about him I'd have to make his own post because he's one hell of a friend.. Anyways I asked him 'Do you think I'll ever fully recover and his answer was 'Sure Of course yes' or something like that and it made me think.

Here was this person looking at me, seeing the pain I was in yet his belief was unchanged, maybe if you're in my situation you need people like him around you, people who will not see a sick person in front of them but people who'll always see a recovering person.

I've had some very unpleasant couple of days and I'm still in the middle of unpleasantness (That's not a word is it?) But what I love about my people is that they never feel sorry for me or treat me like an invalid, yes they look after me but to them I'm just Silindile or Sli as I'm called. They see how ill I am but because I handle it they also handle it, together we kick this illnesses butt and will keep doing it...... I hope I can remember how I did this post on this phone, maybe I'll post daily if I do.

As for my update here it is: The headache is normalizing back to what it's always like.. The nose bleeds are under control.. My leg spasms haven't been smacking me square in the face for the past two days and it's a relief, I hate being hit by my knee in the middle of my face but now that I write it down it's funny.. I'm able to drink water again after a 2 week difficulty.. I saw a doctor about the flashy thing in my eyes and he'll be giving me new glasses.. I made an EEG appointment but had to cancel when I heard how expensive it is, will make it again after my father gets his December work bonus. I feel guilty taking his bonus I really do.. I've spoken to my doctor about getting more allergy tests and he said he'll try to get in touch with Aurora Hospital, apparently they're the best and I googled them...... That's my update, hopefully I'll be feeling even better tomorrow and might come back to the website and maybe even chat.

Thank you so much for your support and kind words, I read them and my heart smiles because they're so sweet and I feel even more blessed. Thank you all very very much.

Usually I get help writing and posting here, those times are my not so great days kinda like these days, but today my cousin helped me set up and I’m doing the posting.

Truth is these days I’m not doing good, not doing good at all. This damn stupid illness decided to tighten it’s bite and sting a little more than it’s been stinging these last couple of weeks………….. I wanted to write about my typical day, I even got my trusted sidekick (My nephew) to take a few pictures and surprisingly the little man takes fantastic pictures, look  out Annie Leibovitz that’s all I’m gonna say… But that post will have to wait a little till I feel better and can type real posts.

I don’t know how long I’ll be feeling like this but I pray it won’t be too long because it really isn’t cool to feel like this, being too sick to even spend time with my loved ones.

I’m gonna miss you guys, this site has been very helpful to me and I’ve met amazing people. You’ve become not only helpful with your great advise, you’ve also become my friends and that’s very special to me.

I’ll see you when I feel better, this will be over quicker than you can say what? Knife of course.

I’ve wanted to write a new post since yesterday, I tried to write a new post 4 times since yesterday but my health these days not only made it hard, my eyes made it worse. So what’s going on?  

It’s no big deal, I have been feeling weaker and weaker, then of course I started swelling up. I hate it when that happens because I know it means I have a hard time and it just started. My face is looking a little funny really, all swollen and ugly but my stomach is even funnier. Whenever my nephew sees it like this he walks in and pats it while the words “you’re having a baby too mom” roll out of his mouth. I laugh and sometimes I nod my head just to humour him and boy does he get excited. That kid is a big ball of sweet.

Yesterday I saw a doctor, not one of the doctors I usually see but a new one this time. I figured  adding one more cannot do any harm. I took all my records and when we got to his rooms we couldn’t get in, they are upstairs and you have to climb long stairs to reach him. There’s no lift, so we sat and tried to map out our plan but the only thing that seemed logical was to turn and go see another doctor……. As we were getting ready to leave the person who was with me decided to go talk to the doctor, and within 5 minutes the doctor and his nurse came to see me in  the car. I wasn’t sold on the idea but the pains in my body were screaming “at least get an injection and go to bed.”

When the doctor started flipping though my records and doing a lot of nodding. I closed my eyes and prayed he finds a test we haven’t taken or notices something out of the ordinary, I prayed for him to pick up something other doctors missed and when he made notes I thought yes he found something, but I was wrong.

He suggested I get lifted into his rooms while my wheelchair followed, it was hard on the person who did the lifting but I‘m thankful…… The examination was the  usual and even though I was and am still swollen, even though my stomach looks dark and big, even though my head is pounding and my eyes can barely see, his results came back as clean as all my results always come back and I put my hand on my eyes  and hid my tears once again……………………….. I’m asking and was asking for an answer, a miracle, a little red flag to follow up on but again was given clean results. Maybe this will sound silly but I’d prefer to know I have this and this, at this point I’d take whatever I can get.

Then something totally new happened, I’ll post about it tomorrow because I’m  not doing so good right now.

Stay Beautiful………..Cheers

Last night was not a good night for me, I had a lot on my mind and pains on my body, not a good combination. I couldn't sleep till shortly after 3am and when I started feeling  sleepy I did  a little mental victory dance as I closed my eyes and drifted off to the land of sweet dreams (some funny, others scary, others weird... I enjoy weird ones).

I woke up soon after and saw that not only was on the floor but I was also wet. My brother was standing over me blowing air in my direction with a chopping board, mom was talking to dad on the phone, my sister who works nights this week was still at work, my gran was in the corner praying and II was on the floor thinking why am I wet...... He helped me till I was feeling okay, then he went to sit in the living room while gran helped e change my wet clothes. When we were done my brother picked me up and put me back to the bed and went to his room to go back to his own sweet dream land.

My cold packs needed to be change and my good hearted gran went to the kitchen to get new ones while mom told dad all was okay so he could get his own sleep. Let me tell you about the cold packs: As you know my left side is the most affected side and in the case of my leg it's really frustrating. It's like it's burning, the feeling deep inside feels like it's on fire and it is SO painful I hate it. The doctor checked and checked what could be causing it but we found nothing, I couldn't sleep at all and the leg was swelling up and needed to be cooled down, so we were given these cold/ice packs that we keep in the freezer and I take two, wrap them in  a thin towel to avoid frost bites and place them under my leg right in the knee area. I place a pillow first, then the Ice pack and then my legs, or rather the left leg on the pack, the right leg is a lot better. I keep the burning feeling controlled like thhat. It doesn't go away but it gets a lot better and I have been using this thing all day everyday since 2005.

After the packs were changed gran came back to tell me why I woke up wet. She said I had fallen asleep and next thing she saw me shaking uncontrollably and then got thrown off the bed and on to the floor where I continued shaking violently till she called my brother. He did what they always do but realized my pulse was barely there, I was foaming in the mouth by the time he got in my room and soon stopped breathing. He tried to wake me up, splashed water on me, gave me extra air and CPR till I started breathing again, that's when I soon opened my eyes and saw I was wet. It took some time to get me to  normal before he put me back to the bed.

When I heard all this I cried, I couldn't imagine how it's like for them to watch me stop breathing in front of their eyes, I also cried because it's a terrible thing that keeps happening to me and it's painful. I pray everyday for an answer, a little light. I thank God my gran was there when it happened and woke up my brother, I thank God for all of them.

Tonight my prayer is simply "Lord help me through this journey, show someone an answer, amen"

Today I decided to write about the not so good, about the hard time I had accepting this and the personal struggle, the anger, shouting whenever I could talk, crying, losing myself and just being angry.

According to my family for over a year after I started living with this we all thought it was a passing thing, we believed I was gonna wake up one day like any normal person. Okay let me tell you how I wake up. As you know I faint all the time and usually get thrown to the ground when the shaking start, so picture this, I'd be fast asleep and start shaking in my sleep till I fall of the bed and land on the sponge they keep next to the bed, I'd keep shaking on the ground banging my head till maybe I'm even off that sponge or against a wall till I stop breathing and they start helping me till I resume breathing. I open my eyes and what do you know, it's morning and I'm already all banged and bruised.

So naturally we believed it was gonna go away one day because all my test results show and have always shown an all clear. Months went on and month after month the belief started fading and I started getting angry. I didn't wanna be touched or comforted, I was angry without ever saying  I'm angry, my faith was fading and I said to my mother "If I had done some big sin, hasn't God punished me enough?" We cried and cried till I fell asleep for a few minutes.

This anger went on for a long time, the feeling of being deserted and at some point I started doubting God's existence...................... But my family's love and patience finally made me calm down, and after a lot of soul searching I finally realized that "hey idiot you're still alive for a reason, stop whining and live your life" and that was the best decision I could have ever made because I'm not ridiculously happy but I am happy. Another thing is do you remember my beautiful stranger poem? Well he came into my life and though it took a long time but I can safely say I credit him for a lot of my progress, he gave me so much but that''s a post for another day.

This journey I'm on is hard, it is very hard and there are a lot of down and too few ups, I get thrown down and sometimes get my hopes up only to come crashing down and breaking the ground that's under me.

I have the faith, an open heart, the desire, if I were looking for a man they'd refer to this as "She's out there, totally out there".  What I'm trying to say is these past few days I've been getting worse, first it prevented me from finishing my exams, then I thought no I can still try on  the 30th but no, I'm getting worse.

My problem is not the illness part, I'm used to that part now but the one part I hate is not being able to talk to my nephew, he comes into my room, hugs me and put his head on my tummy, he talks and asks his million questions but all I do is smile. I can't even write to the kid, he's 6 and can only read one words at this point.

That's him, just look at this face..................... Ah he makes everyday worth it.

I'm disappointed because I was doing a lot better. I felt it though, I started feeling dizzy and then the swelling up of the legs, the vomiting, the swelling up of my tummy, the shaking, all those things were saying "Hey you" and I paid attention, but without the proper diagnosis all  the attention paying isn't accurate.

Today may be hard, tomorrow may be dark, but one day the light will shine so bright it will blind my eyes... In a good way

These days haven't been kind to me, I'm very sick, I'm nose bleeding a lot and I'm swollen like a cake baking in the oven (not those burnt crusty ugly can't be eaten cakes, I look like the sponge cake... Hey I have to be kind to myself). I don't like feeling like this or looking like this, truly on these days I find myself thinking a lot and I know too much thinking is never good.

I started thinking about the things I've missed out on and that reminder me of "THE PLAN", I had a plan you know, when I was in high school I made a life plan, I drew it up and was set on following down to the last detail. Maybe I was naive, maybe I was bored but at the time my list looked like a great idea but life had other plans for me.

I didn't put down things like BE THE FIRST SOUTH AFRICAN WOMAN PRESIDENT or FLY TO THE MOON, those weren't my ambitions, mine were a little lower and much less extreme but they were mine and I couldn't do them.... OK let's take a look at them.

- I wanted to be a CA when I turned 24 yrs old (I'm now 25, guess that goal is gone for good)

- I wanted to be married by now with 2 kids (this one wasn't really up to me but it was on the list)

- I wanted to buy my parents a house last year (another one down the drain)

- I wanted to work for Deloitte (Ah I think I'm gonna cry)

- I wanted to drive a Z3 (It was hot back then, what's hot nowadays?)

Maybe I should make a new plan, a realistic but still great plan and hopefully this time it won't sail away on a paper boat while I stand on the shore waving bye bye with a sad look on my face.... A new plan is a must and I'm gonna start working on it.

I have exams starting on the 28th October, hopefully I'll feel good enough to start sturdying soon.

Cheers!!!