My fiancè’s struggle with chiari malformation: My journey too

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Before I begin, I need to say a couple of things first, disclaimers of sorts. First, thanks Chipo for giving me space on your blog. I have been an avid reader since day naught. I’m delighted and humbled to be given space to contribute.

Second, writing in English like this is foreign. I’m now used to communicating, nay, expressing my feelings better in vernacular. Don’t get me wrong, I can communicate in English, I just don’t like it. There is something about writing in Shona that just brings certain words alive. I digress. So, if I don’t make sense, do forgive me, English isn’t my first language. This post has been a long time coming. After I read your post about your journey with Chiari Malformation and syringomyelia (See post here), I was moved, ok fine, I cried (a little). What struck me was how honest you had been with your struggle and how you had been trying to manage the condition. I had been a part of the journey with you, but just reading about it made me realise that one can be a part of something but still be oblivious of the same thing. I’m not one for talking about personal stuff, moreso on cyberspace, but perhaps someone will read and benefit, so here is my journey alongside you:

How it started

I remember it started off as a common cold. I remember that you were buying a lot of oranges (for Vitamin C), Med-lemon, as it is supposed to be the go to cure for the cold. 3 weeks after the first symptoms, you were still sick. When you went to the doctor and he said that it was pneumonia, I got a bit of a shock, as pneumonia is usually a pre-cursor to other diseases. Yet I didn’t worry. The doctor assured us that all you needed to do was to take your antibiotics and you would be fine. I was at ease. Then you started to feel pain in your arm. I would watch you writhe in pain when I or someone else would shake your hand. No longer where you able to arm wrestle with me, or type on a computer for extended periods. You started withdrawing from hanging out with friends. We had to cut down on doing things that we loved, like playing pool (ok fine, I love playing pool, you just went because you enjoyed my company!). I was still at ease.

Thoracic Outlet Syndrome

Then the other doctor said you had Thoracic Outlet syndrome. I had no idea that such a disease existed. I tried to read articles on it but couldn’t make sense of what the disease was. All I knew was that you were in pain, always. I wasn’t fine anymore. I could see you trying to put a brave face to do things that would cause you pain. I could see you trying to lead a ‘normal’ life in spite of having a horrendously painful arm. I remember the day you went for physiotherapy and you swore never to go back again as the guy was literally wrestling with your arm. I tried to help you as much as I could then by doing whatever thing was most difficult for you, but it wasn’t enough.

Chiari diagnosis

Just when I thought I had heard all the diseases with the funny names, in came Arnold Chiari malformation. There were three things that I got from the new diagnosis: 1. You had a cyst in your spine. 2. Your brain was putting pressure on your skull. 3. You needed to get a piece of your skull removed.

To be honest, I really didn’t know what to do. Why was God doing this to me, I thought to myself. What had I done wrong? It seemed to me that your disease was a punishment of sorts for something that I had done. Herein lies the problem. I took you out of the picture and began focusing on myself. I forgot for a while what you were going through and focused on myself. I thought to myself that this isn’t something that I signed up for. Why cant we have ‘normal’ couple problems, like having arguments about whether or not I should shave, or whether or not you think buying an Xbox is a worthy investment. I certainly didn’t sign up for all these other things. Thinking like this made me realise what an ass I was being. I couldn’t believe that I was thinking like this. Does one love someone just because they aren’t sick? Surely can you only love someone in the good times and when the going gets tough you think of bolting? If that was love, then I certainly didn’t want it. I had always prayed and hoped for someone to love me through thick and thin. I thought to myself that this was the opportunity to show my love, that no matter what you were going through, you weren’t alone. I was with you.

I was with you the day you went into surgery. In fact, I had a small procedure of my own that same day, in the same hospital, but all I could do was think of you. I was thinking whether or not you were comfortable. Whether or not you were scared but didn’t have me to hold your hand. I remember when my procedure was done and I rushed to your ward and I saw you sedated with machines hooked up to your body. All I could do was watch as I was powerless to help. If the operation was what it took to make you better, so be it. You wouldn’t have to walk alone. From your experience with chronic pain, I saw a different side of you that I hadn’t seen before. I saw a brave girl. In spite of the seemingly insurmountable challenges, you held your head high. You would face the world everyday with renewed verve. I saw an optimistic girl. Yes today you were in pain, but tomorrow you may not. I was inspired.

Lessons from being a part of this journey:

  1. You can be a part of someone’s story, yet you don’t know much about what they are going through. It is important to check up on each other.
  2. Big boys do cry. There’s no point in trying to remain calm when things aren’t fine. It’s ok to admit to yourself that you are not fine. It’s ok to let out a cry or two to get all the feelings and emotions out.
  3. Get support from other people. Life is tough as it is. You cant go at it alone, get a group of ‘cheer leaders’ around you to egg you on.
  4. Don’t wallow and do nothing. If you are in difficult situations, do your best to find solutions.

 

“Life isn’t about waiting for the storm to pass, it’s about learning how to dance in the rain” – Vivian Greene

In the immortal words of my childhood hero Porky Pig, “that’s all folks!”

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13 Things you don’t say to a person living with chronic pain/ an invisible illness

marginalise my experienceI am now in my second year of living with 24/7 excruciating nerve pain in my neck, shoulder, shoulder blade and down my arm, my right arm and I am right handed. Over the past year I’ve dealt with all sorts of reactions and have realised that many people, some with the very best intentions, say the most hurtful things. Here are some things that you might want to re-think before saying to a person in perpetual pain.

invisible illness

  1. I know exactly how you feel. Trust me, you don’t. If you once broke an arm or twisted an ankle and lived with pain for a while and then it all got sorted, then you don’t know what living constantly with pain, sometimes with no end in sight really feels. So thanks for wanting to stand in solidarity but no you don’t know how I feel.
  2. You need to have more faith. This one is for my Christian brothers and sisters. Please encourage me, pray for and with me, send me Bible verses about healing but DO NOT ever insinuate that the reason why I am still ill is because my faith levels are too low. You are not the faith police and you don’t know what I do or don’t do when I’m alone with my God. Just be supportive and stay in your lane.
  3. Surely it can’t be that bad. Yeah you know this how exactly? I am probably not even telling you all of what I go through so take whatever I say and imagine that it’s hundred times worse not less. If  a chronic pain sufferer told you all of what they felt every time they felt it your head would explode because there aren’t enough words for what we go through.
  4. Surely it can’t be all the time.To some extent you are forgiven for your doubts because before it happened to me no one would ever have convinced me that anyone could be in pain every second of everyday. Yet, I sit here with what feels like a blunt object jammed into the area between my neck and shoulder as I have for over 12 months now. So yes, that time you saw me at a party I was in pain, when you see me in a shopping mall, I am in pain, when you don’t see me for months, know that I’m in pain and even when I’m asleep I am aware of my pain. There is no recess, I get “good” days when pain is maybe a 4 out 10 but for the most part it’s above 7. So surely it is all the time.
  5. Have you been to a doctor? No, I’ve just been chilling here enjoying every moment of feeling like there is hot charcoal inside my veins… good times. OF COURSE I HAVE BEEN TO A DOCTOR DAMMIT! Especially if I have mentioned that I’ve had this pain for more than a year, there is no excuse for you asking this question. I don’t even have any more words to this point because seriously, dah.
  6. Sometimes it’s just your mind playing tricks on you. This is usually followed by a story of some uncle or niece who was just missing a few things in their life and as soon as they found whatever it was their “pain” went away. Listen, I’m not any of those people so just take several seats and don’t comment on what you don’t understand.
  7. Geez you are no fun these days. Ok let’s see. I must hit the “pause” button on my illness and hurry up and be a ray of sunshine so that your life can run smoothly eh?
  8. You just have to speak to your illness and refuse to let it get you down. Yeah, lets break your arm in several places and see what sort of conversation you will have with it. You get a flu and you call in sick at work and tell everyone on Facebook  but then you go so someone who has something you don’t even understand and tell them to use their willpower to snap out of it?
  9. You are sick againNo, STILL sick from when you asked me a couple months ago and put a little more emphasis on “again”. It’s always comforting to know that my continued illness it becoming monotonous to you.
  10. There are people who are surviving worse. I know that and I am sad for them but be tactful with your timing. There are times when I am rational enough to step back from my situation and see the bigger picture, see where I have it easier than other people. But that time is not when I’m locked into one position and i can’t move a muscle because of the pain. You don’t come to me talking about people whose limbs were blown to pieces in a war in Iraq.
  11. You look fine to me though. Sooo you want blood to be oozing out of every opening in my body for you to qualify me for a person in pain?
  12. All those meds are not good for the body. Yeah, pills are my favourite dish that’s why I choose to take them. It’s not like the situation is forcing me to take them or anything.
  13. Just a few minutes ago you could do this but now you can’t? / I thought you said you couldn’t do this, so are you ok now or were you not being honest? I have ‘good’ moments and bad ones, sometimes I even have good days. So yes there are times when I can ‘live a little’ and carry a grocery bag. That doesn’t mean I’m healed. At times I know that I have to push through the pain, nomatter how bad it is. That’s when you see me ‘doing things that I said I couldn’t do’.

you dont look sick

This is not all, a lot of people with invisible illness endure more abuse than this. There is a lot you need to learn about people around you and the tact of communication. If you absolutely have no idea what the right thing to say is just say say,” I’m here if you need me for anything” and leave it there.

 

Secret diary of a Christian whore. Entry #9

life lessons with Chipo Mutibvu. secret diary of a secret whoreDear diary

They say hell hath no fury like a woman scorned. I hate cliches but in this case the cliche fits. I can’t stop watching and re-watching this video. Who would have thought that so soon after I had decided to live a righteous life that 2-minute man would have replaced me with an old woman who probably dried up before I was even born! I mean seriously, what did she see in him and what did he see in her? For some stupid reason I actually thought Pastor E’s wretchedness was about me. I thought he was a morally upright man who loved his wife and wouldn’t cheat on her but when I walked into the picture I was just too beautiful and so appealing that he couldn’t help himself. This is one of the few times that I have ever been wrong about men. He slept with me because he simply couldn’t keep it in his pants and would hump anything with a hole.

Anyway, please forgive my little rant. I had to get it off my chest, for as you know, dear diary, this is the only place I can really show who I am. My rant is about what’s been happening in my life lately. I think it’s accurate to say there is no dull moment. I have been trying to put my past behind me and focus on a clean relationship with my God-fearing and very faithful boyfriend, Anthony. I told the 2 pastors that I’d been sleeping with that we have to stop the wretchedness because I was repenting. They both seemed to have adjusted to living without the pleasures that they got from me. I was only just starting to heal from the pain of knowing that they could do without me. But to be replaced!!! Pastor E took me back a million steps in what I thought was spiritual advancement on my part. I saw him, with sister Pauline, this oldish woman who is the treasurer or church manager or whatever she is in our church. Pastor E and I just used to call her a busybody, because no one really appointed her for any position but she just used to come to church almost daily to “oversee” something or other that she found interesting. To think that he took the woman we used to laugh at behind her back is absolutely appalling. Come to think of it, are they now laughing at me behind my back? Wait, I said “now”, what if it started a long time ago during my times of storerooms sessions with Pastor E?

I should not be obsessing about this. Pastor E and I never exchanged any vows. He was cheating on his wife with me for crying buckets so why should I expect him to stay loyal to my memory. Especially since I took my services to him off the table? The sister Pauline story went like this… I should call her grandma Pauline but anyway the whole church calls her “sister”. She is a widow or whatever. All I know is that she is not married. So since I sold my car and went back to live with my parents I have been leaving work early because I have to catch the bus before the majority of people knock off. Pastor E and I used to have our storeroom sessions at around 4 but these days I would leave earlier than that. On Monday I left at around 3, as usual, and started walking towards the bus station. As I was walking, Anthony called me and said that he wanted to see me and maybe grab a bite. Well, it was Anthony, it was going to be a measley KFC or something like that so I almost gave an excuse. I then remembered that I was desperately trying to make it work with him so I decided to just walk back to work (the church) and wait for him there. I knew E would still be there, waiting for his wife to pick him up. I was a bit tensed up about going there knowing that he would be there and most people would be gone and it would probably be just the 2 of us. I was right, he was there alright, but what I didn’t count on was to see that woman sister Pauline in what used to be my place, bent over with Pastor E behind me! Not that she could properly bend with all those rolls of fat she has in place of a stomach. I had walked into the office and found it unlocked but didn’t see him. So I thought he had gone to one of the offices or houses around the courtyard of the church but then I heard the noise of a desk or table or something coming from the storeroom. I knew that sound well because the little table in there used to make the same noise when I used to lie on it face down with E jerking me back and forth. Like my days, there was no woman’s sound because E is not the kind of man who can actually make you “moan and groan” or whatever sex noises are called in R n B songs. I only used to make any kind of noises when I was broke and needed to please him so that he would be a little more generous with his payments.

I walked over to the storeroom and saw them. The door was left slightly ajar because no one ever came here around that time. True to his nature, he finished quickly before I had a chance to really assess the act. After that, I made it my mission to watch them closely and I realised that we have more brilliant actors in real life than the ones who win awards. On Sunday at church they acted all holy and spoke to each other about church business but there were other people around, including Mrs E and no one would ever have guessed what these two did in private. I then decided to sneak up on them on Monday and do what any wretched, bitter person with a cellphone does these days, I took a video of them. That’s the one I am watching now. I feel like I have found a new passion in life; stalking E and this woman. Now I am assessing all my options, I could swap one vice for another, sexual immorality for blackmail…or I could just pass it around on watsapp and shame them? I don’t know…got to weigh my options.

Till next time…