Misunderstood

‘Who hurt you?’ I asked aloud, referring to my uterus. I was tired of her tantrums. She behaved like an old bitter woman, who was trying to hurt me and cramp my style. Her negative attitude was like a pregnant dark cloud in my bright blue sky. My positive attitude was like the blaring sunshine before it rains. The proverbial ‘Hii jua ni ya mvua.’

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The mention of Eve’s name would make me cringe. I blamed her for my uterus’ monthly anger. Why did she have to listen to the serpent? Of all the trees in the garden, she chose the one that was forbidden. Curiosity killed the cat. Curiosity also harmed Eve and her descendants.

One day I woke up and called my uterus to a meeting. That morning, I blasted some worship music, wore the prettiest top I owned,  sprayed some nice smelling perfume, and read up on how to deal with a hurting individual. Then I prayed and I set out, well, more like set in, to have the discussion of the day.

I had decided that nobody, or uterus for that matter, was going to dull my sunshine.

“Hi Missy! ” I said in a high pitched voice.

“Hmmm!” she grunted

“First, I’d like to say sorry about all the mean things that I’ve said about you. I didn’t meant to make you upset.”

“Go on, I’m listening.” She responded. My sandwich approach seemed to be working. I was apologizing before stating my case.

“I’d like to call a truce. Help me to help you to help me.” I said, almost pleading.

“Y’know, you sound like a really nice person, when you are not talking badly about me. I think that I can help you, I’d like to give it a shot.” Uterus said as the smirk on her face turned into a gentle smile.

The voices in my head shouted “Hallelujah!”. I was excited that I was making some progress, but I needed her to tell me exactly how we could work together.

“What can I do to make your living conditions a bit better?” I asked.

“Thanks for asking.  This is going to be a long response, you better get a pen and a paper.” I quickly removed my notebook and pen, and put my phone on ringer. Nothing was going to disrupt my peace negotiation.

“What makes me most upset, Ess, is when you eat all that oily food, dairy and wheat and your stomach bloats all up in my business. It’s difficult to breathe with your intestines in my face. How would you feel if you had balloons constantly poking at your face? Huh?  Bananas make me happy, They relax my muscles, I’d like more of those. It wouldn’t hurt, if you’d drink some more water. Chill out on the alcohol and coffee.” Missy said then paused to catch her breath.

“Ess, Heat is bae. Snuggle up with hot water bottle, I’m cold. I want some love. Have a cuppa and warm me on the inside. I know you want to lie all day, but I need you to keep moving. Give me some endorphins. Boost your levels of fish oils and magnesium, those help me feel less cranky. Finally, if I cause you too much pain, please remember that it is not personal. Contrary to popular belief, I don’t enjoy losing a part of myself every month. If you are in a lot of pain, please pop a painkiller. If it feels as though I am screaming each month, or cutting you from the inside, do us both a favor and see a doctor. Lord knows we need all the help that we can get.”

“Oh Uterus, you had a lot on your chest. Thanks you sharing your thoughts and the tips. I will definitely take them into consideration. I want us to live in peace. I’m sorry you’ve been hurting so much all this time. Honestly, I thought you were just a grumpy old lady. But, it turns out that you are pretty cool. Let’s hug and make up.” I said as I stretched out my hands to embrace my fiend turned friend.

“Ess, I’d love to hug you but your intestines are all up in my space.”

“Oh! I’m sorry about that. I’ll work on the bloating. Now, let me eat a banana and make you happy.”

It turns out, I’d gotten it all wrong, Miss Uterus is not a bitter old woman, she’s just misunderstood.

 

 

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The Diary Of A Kenyan Endo Warrior – My Struggle With Tampons

Dear Diary,

I’m still super excited about the pad dispensers, because I still can’t use tampons. Rather, I still choose not to use tampons. My struggle with tampons begun as a preteen. My mum told me that they were not for young girls, and told me that they could make me sick. Toxic Shock Syndrome was described and I got scared. I envied the girls in school who swore by them. They did not have the pad problems, you know, having to change all the time, no odour ( remember the time Always had THAT scent?). They could swim!! Oh, THEY COULD SWIM! I on the other hand, used to sit on the sidelines watching, enviously.

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Deep within I knew that once I was an older, out of the nest, I would use tampons. When I got an opportunity to try, it went awfully wrong. I could feel it deep within. It was so uncomfortable. The next time my period rocked up when I was least prepared and a tampon was what was available. That has to be the longest night of my life. That was discomfort 101. As if the discomfort was not enough, the flow seeped through. That day, I decided that tampons were not for me.

My biggest question has always been, where do the clots go? Where?? The flow is usually 80% clots, so the tampon definitely is not the most practical tool. Let’s not forget, how inflamed, tender and uncomfortable the pelvic cavity feels at that time. A tampon seems like a tool of the enemy at that time.

A few years ago, I detoxed and felt a newness and relief I had not felt in a long time. As I weaned off different chemicals, I saw a relationship between what I put into my body and how I feel. My reservation with tampons is that I don’t know exactly what I am putting in. My research has shown me, that I need to care about such things. It may seem silly to some, but pain free days are indeed, slices of heaven. They are not to be trivialized. One of the articles I read reinforced my resolve to watch what I put in.

I meet girls who love pads and others who love tampons, periods are personal, and every one has their experience. My advice to both is, do your research well and then choose what is most comfortable for you.

Love always,

Ess

 

The Diary Of A Kenyan Endo Warrior: When It Rains, It Pours and Sometimes Overflows

Dear Diary,

My periods, while in high school, started off innocently, like the morning dew, I was relieved to finally be a woman. And then someone opened the tap and they poured and overflowed.

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The number of times that I soiled my clothes and sheets are too many to count. It was the usual, so I hated having to sleep out or stay out late on those days. I remember when we set out to climb Mount Kenya, I prayed to God to save me the agony of having my period on the Mountain. Back then I didn’t know about the pill to postpone my period. So I used another method, I avoided all the girls who were currently on their periods. I didn’t want anyone inspiring my periods to come while on the mountain. Poor girls, had to endure periods without showering. But, I think at that altitude your body is a little kinder to you. Well, I hope it is.

Once we got down from the Mountain, and into the hotel, my periods came. My pink trousers, that I loved, were now a hot mess, a bloody mess. The pain I felt was out of this world. I couldn’t stay to celebrate our victory, i just went to curl in bed. My uterus was punishing me for taking it to high altitude. It was a long night. The flow seeped through my protective sheet, and I was stressed.just-dying

Somebody needs to make pads for Endo warriors. A super long, super absorbent and super comfortable pad. I tried wearing two pads, before, but yo! that was extremely uncomfortable, I got a skin irritation from the pad materials, so I was left torn between heavy flow and irritation. They make for a horrible combination.

I tried adding cotton but that too was uncomfortable. Tampons are a story for another day.

Why are there only 8 pads in one packet? How many is one supposed to use in a day so that they are enough for the cycle? For me to be comfortable each month, I need between  two and three packets. Now, I’m able to buy as many as I’d like, but back then, being a teenager whose flow was out of this world, that was difficult.

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Why don’t suppliers keep their supply regular? It is soo frustrating when you finally find a pad that works for you and then it’s out of stock, or better still, a bootleg version floods the market and now you have to choose another brand and pray your way through your periods. Because your poor bum is so sore.

I’d love to see a pad company, tailor make a pad for girls with Endo. A brand that understands that when it rains, it pours and definitely overflows. One that understands that clots are real and we’d like a cotton top sheet, one that doesn’t irritate our bums. All for the same price, because Endo is already costly enough.

.

Love always,

Ess

 

The Diary Of A Kenyan Endo Warrior: Period Shaming

 

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Dear Diary,

My heart is heavy. Thinking about my periods as a teenager has brought tears to my eyes. When my periods became painful I heard all manner of comments from other women about how I should suck it up and put my brave face on. “No one needs to know you are on your period. Every woman has a period, you are not the first to have one and you surely won’t be the last”. These are words I heard so many times, and each time they pierced my heart.

I learned to put my brave face on and suck it up. Sometimes the pain was so severe that I couldn’t sit in class. The school nurse was not of much help. She quickly drew an image of the female reproductive system, explained that periods were normal and so was the pain, as she gave me two paracetamols.

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I remember those pills were so hard to swallow, I always said a prayer as I swallowed them. Sometimes she wouldn’t let me rest, because I’d become a ‘repeat offender’, a regular in her office every month. Yet, I never prayed for a painful period. After all, who likes to be sick anyway? I dislike being sick. I felt guilty for being sick, ashamed to be a woman. Sad that I was ‘that’ girl, the one with the problematic period.

Every woman gets periods but not every woman has Endometriosis. Just because your period is painless, doesn’t negate another woman’s painful experience.

Over the years, I grew tired of pretending to be okay when my uterus was collaborating with other organs to kill me slowly. I wore a brave face, while all along, I was dying slowly.

The thing that I wish all women knew is:  Just because your period is painless, doesn’t negate another woman’s painful experience. We need to stop period shaming, and talk about periods openly.

Painful. Periods. Are. Not. Normal!

Love always,

Ess

The Diary Of A Kenyan Endo Warrior: It’s A Bloody Affair

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Dear Diary,

As a little girl, I wanted to be a doctor when I grew up. This dream quickly fizzled away where I was in high school because my periods happened, and little did I know, Endometriosis was looming.

Back in primary school, I looked forward to my menarche because it meant I was becoming a woman. Home science lessons on puberty were interesting and I even had a pad bag packed, just to be prepared for the big day.

When my period eventually came, I was taken aback. Here was the blood I had been waiting for, but it was a very different experienced from what I expected. On the first day, I excitedly told my mum it had come and she in turn broke the news to my dad. He barely looked up from his newspaper as she spoke, his reaction was a shrug as he mumbled something in the lines of ‘ahhh, okay’.

As much as I paid attention in class, that valuable information did not prepare me for the reality on the ground. Nope. Not at all. I didn’t know how it should feel, smell, or look. And so I thought that the pain was normal, I was convinced it was normal and I embraced the painful normal.

My periods robbed me of a part of my life. I missed out on school; on fun; on life.

It was a bloody affair. My periods were horrible, the sight of blood grossed me out, the smell repulsed me. Some days I thought I was dying because the flow was so heavy. One pad was not enough to hold the flow, so I learned how to wear more than one pad and use other reinforcements.  The clots, oh the clots, they freaked me out. Nobody told me that chunks of body tissue mixed with blood would come out of me. The first time I saw them I was so scared; after seeing them for a couple of months, I realized that they were my normal, my painful, unsightly normal. Soiling my sheets was a regular occurrence, I didn’t understand how one could sleep and wake up without having an accident. And I hated every part of it. Every. Single. Part. Of. It. Especially the pain and the blood. Because the blood came with sweat and tears. My periods left me drained, upset and bitter. I hated this bloody affair.

Love always,

Ess

 

Why I Keep A Period Diary

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Ever since I was a little girl , I always kept a diary. It was my outlet and a way of keeping a record of the little details of my life.  Unfortunately, I was not very detailed about my periods and their patterns, so when I needed this information, it was nowhere to be found. I answered the doctor with a lot of ‘Umm, I can’t quite remember’ and blank looks with several breaks in between as I tried to run up and down the corridors of my memory trying to remember key details. I am sure that there are many ‘little’ important details that I left out during these consultations.

After many years of trying (and failing) to recall from memory I finally discovered the Period Diary app and it literally changed my life. I was finally able to document my period journey daily, and a couple of months later I begun to recognize patterns in my cycle.

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I quickly realized that my menstrual cycle is not just about the day(s) that I shed the lining  of my uterus. It is about what I experience through the whole cycle, my emotions, diet , ovulation. It is the vaginal discharge all through, the color and texture of the actual shedding. Keeping a period diary has helped me to be more in control of my body, as I know what it’s triggers are and what to anticipate at different times. I am definitely more prepared for the occasional pain, PMS symptoms and actual periods.

Keeping a diary has helped me to see the cause and effect of different things that I’ve tried. For instance, when I detoxed and started taking an Apple Cider Vinegar elixir every morning the inflammation and pain during my cycle significantly reduced. I also figured out that the monthly headaches were reducing over the months, so I was definitely doing something right.

I recommend keeping a period diary to all women, both young and old, whether you have complications or not. It helps you to understand your body, it’s functions and your emotions.

Mothers with teenage daughters, I urge you to ask your girls to keep a period diary as soon as they start their periods. After every couple of months, sit down and review it with them. Talk about the patterns that you both recognize. Many girls don’t know what a normal period is. They often just take their periods as they are,  persevere, until they are adults and realize that something was wrong all along.

There are several period diary apps that you can choose from on the Play store. This is the one that has worked best for me.

If you opt to keep a physical diary, these are some of the details to record:

start-of-periodend-of-periodduration-of-periodsymptoms-physical-symptoms-including-pain-and-discharge-cravings-moodssupplements-medication-or-birth-control-you-are-takingother-notes

 

Blessings,

Ess

#TheKenyanEndoStory : Nurah Palesa

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The first Kenyan Endo warrior sharing her story with us is Nurah Palesa. Hers is a story of pain, despair, strength, courage and hope.

Before I turned 10, the year that pain became the filter to which I would see life, I was eagerly awaiting my periods. I looked forward to it like a boy would await his ceremonial rites of passage. I wanted to see the drops of blood on my underwear and have a crazy happy dance celebrating my new life as a woman.

 

I am Queen Nurah, and at the age of 25 I have lived with Endometriosis for 15 years now. I run on happiness. There is no one thing that makes me happy, a combination of the things that pull my heart strings is how I live. As for my profession, let’s just say that I am a Storyteller and Poet.

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Where it all begun

 

The pain begun immediately I started my periods. I was sitting in the back of the class, talking as usual and ignoring what the teacher was writing on the board. Then my insides were attacking me. It felt like someone had run a knife across my abdomen over and over again. I shakily put up my hand and asked if I could go to the bathroom.

When I got into the cubicle, something told me to check my underwear and hoorah I had blood. But I couldn’t do the crazy happy dance, not with the pain that I was feeling.

I remember going to one of the “nice” female teachers and telling her I got my period and that I was in intense pain. She was nice, she showed me how to put a pad on and for the pain she said that it was normal and hot water would help. “Normal? Are you crazy, I feel like I’m dying!” I thought to myself as I gave her a look that showed I thought she was crazy.

Maybe two hours later, I don’t exactly remember, my mother was called because now I was wailing and “causing a scene”. Hehehe, causing a scene.

At the end of the day my mom gave me Syndol. Yep Syndol. That confirmed my suspicion that the pain I had was not normal and for the next 7 days I suffered.

 

Managing the pain

For 13 years I was subjected to excruciating pain before my periods, during my periods and 3 days after my periods. In total I was in pain 15 days out of the month.

I ended up having a cocktail of painkillers in my bags. Here is the list with what I started to what I take now:

  • Syndol (4-6 pills in an hour/day)
  • Betapyn (5-6)
  • Postan (10)
  • Brufen (10)
  • Buscopan (10-12)
  • Buscopan plus (it would land in my stomach and I would throw up immediately)
  • iBoprufen (40 mg 6, 80mg 7-8)
  • Vykadin (6)
  • And now I’m on tramadol 100mg and when the pain gets really bad I go for the shot.

And while I was on these pain meds I sometimes found that mixing them would help. And when I say help, I mean level the pain to a degree that I could function and not snap at people.

The pain haze of life is amazing. It changes how you look at everything and how you react. Physical pain makes life 300 times worse. Well for me. Someone else could be different.

I had the worst mood swings, had a short fuse and basically I would just want to cry and be alone most of the time. I am generally a nice, gentle happy Queen, but you don’t want to make me mad when I am in pain.

Oh wait, did I forgot to mention that I would get high off the pain meds… lol aaaand that I was a heavy alcohol drinker. For 7 good years.

The combination of alcohol and a cocktail of pain meds made the pain bearable.

I remember when I joined uni and my girlfriends would watch me pack my clutch bag with tampons and meds (3 strips of 10 so basically 30 pills) and they would ask if I was ok. Little did they know that I would have gone through 2 of the strips by midnight.

I would literally get high just to escape the pain.

When I was 22, fresh out of rehab (because others thought that alcohol was the problem) the pain kicked up a notch.

 

Finally, I got a diagnosis

 

Lower back pain and shoulder pain had kicked in, and I needed to know that there was a name for what I was going through. I went to see a gynaecologist and he diagnosed me with Endometriosis. I thought that finally I can get rid of the pain for good now that it’s an actual disease.

I went online and decided to learn all I could about my condition. That’s the type of person I am, I read and research on topics that are of interest to me. So I did what I do best; gather intel.

I found out that foods (which I had always known, I’m very strict with what I eat.) contributed to the pain levels and there was a diet I could start.

Eh….that diet did not work. In fact I ended up increasing my pain and losing even more weight.As for the endo diet, which is vegetarian I really tried… My body just didn’t accept it.. And recently I discovered that diets don’t work for everyone,  our blood types play a big role in the foods we need and as an O+ I need meat.. (Sticking to white)
So again I run around for another year looking for a solution and I found one. Or so I thought.

I went through a Laparoscopy where The Gynaecologist lasered the extra endometrium tissue that covered my ovaries and fallopian tubes and he put a Mirena Coil so that my fertility wouldn’t be compromised. (I had stage 4 of Endo at this point)

 

Relief at last

 

For the first time in 13 years I had no pain.

I loved my life; a zeal for it (which I still have) was born. You know when someone tells you to live life to the fullest and do what you want to do and wave your hands in the air like you don’t care?? Lol, yeah I did that for 3 good months before the pain came back.

 

Back to reality

 

As I write this I have the worst headache ever and my back and shoulders have decided to kick into level 400. The last two days have been brutal because I am ovulating and I can feel the damn egg travelling.

I could change my diet again or find some radical something that will help “ease or get rid of” the pain, maybe even look at the spiritual aspects of it, but my reality is that I am meant to have this pain. I’m just supposed to rise above it and live life to the fullest and that’s not an easy task.

Yoga helps me. And meditation. And maybe some teas here and there. Lemon, ginger and honey is amazing. I generally try and avoid junk and fast foods and sodas… Been on a general healthy diet from the word go.. My moms always been conscious about food.

 

Endo and Family

 

My family is very open with each other; my mom and sister also have endo and my brother was told early on about our periods.
The extended family is a whole different story. I like avoiding them as they disturb my positive energy fields.

I would love a whole football team of children lol.. 

Endo is genetic, my mom and I traced it back to her grandmother(Her dads mom)  so for me it doesn’t really matter if I have a daughter or son,  I’m going to have to tell them asap about endo.. And what they can do from the word go.

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Parting Shot

 

To my queens and princesses I agree it is soo not fair that we endure this pain.

Search for your solutions and remedies. Don’t let anyone stop you. 

However do not forget to live life to the fullest. Do what makes you happy; love yourself and play in the rain.

Oh and please be kind to your sister queen/princess.

Seriously, we women can be brutal to each other and it’s about time we stopped.

The black rose is my favourite flower.

You can check out Nurah’s blog here.

Follow her on Twitter and Instagram.

Thank you Nurah for sharing your story with us. You are a star!! ❤

If you would like to be featured in #TheKenyanEndoStory, please send an email to yellowendoflower@gmail.com and I will be in touch.

Blessings,

Ess

 

I Wasn’t A Hypochondriac Afterall

I almost hugged the doctor the day he have me a diagnosis. I couldn’t pronounce ‘Endometriosis’, and I barely knew anything about it, but it was a diagnosis, and it somewhat explained the pain I’d been feeling. Also, in retrospect, I don’t think that the Doctor would have appreciated the hugs as much as I would have.

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After years of being labelled a hypochondriac and sickly child, it was so refreshing to hear someone finally give a name to the condition I’d been facing. Granted that no one likes to hear they are sick or get a diagnosis they can’t pronounce, but after years of crying in fetal position in pain, getting a diagnosis was music to my ears.

I felt validated , like someone understood me and my pain. I didn’t understand the intricate details, but I understood this:

a) someone believed me

b) the pain was not all in my head

c) we could try to manage it

I had been trying to tell the world for six years that periods this painful were not normal. I struggled with feelings of guilt and depression when getting out of bed seemed like a task too big for me.

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Invisible illness is sometimes very difficult to diagnose. It’s possible to get several misdiagnosis especially when the symptoms are similar to other illnesses.

When the doctor mentioned surgery, I was just like ‘bring it on!!!’. My fear of going under the knife was less than my fear of living in this pain. If this surgery could help, then I wanted it, I needed it stat. Prior to this, I had a surgery that I didn’t need and got an inconclusive diagnosis because the Endometriosis symptoms had manifested in my bladder.

I wasn’t a hypochondriac after all.

Have you been labelled a hypochondriac? Don’t give up on looking for a diagnosis.

‘Big Sis’

I Was Labelled A Hypochondriac

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“It’s all in your head!” is a phrase I heard one too many times. Looking back, I somewhat see where these people were coming from. I mean the symptoms I was experiencing were just all over the place-painful periods, severe bloating, chronic fatigue, irritable bowel syndrome, recurrent urinary tract infections, backaches, the list is quite long. I was constantly in pain. My period had turned into a monster. Rearing it’s head at every point of my cycle. It wasn’t really a cycle, the length kept changing every month. While most of my girlfriends bragged about being regular, I was as irregular as it got. Anywhere from 24-37 days. So much for being able to predict when I’d be rolling.

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I saw several doctors but they weren’t quite sure what was wrong with me. In fact I became a regular at the clinics, the doctors could almost predict what I was going to complain about. They’d heard it all. There is something about hospital waiting rooms that makes you feel sicker than you actually are.

The most deflating moment is when the doc would say “I can’t seem to find anything wrong with you.” One even went ahead to add, “I think you are imagining the pain. It’s all in your head.” In addition to the swollen belly and physical pain, I left his office, with medicine he wasn’t  sure I needed and dampened spirits. Most times I would just go home and cry. I was that girl crying in the lift, not because I had received a diagnosis, but because the professional was trying to make me believe that I had brought the pain upon myself. How I hoped I could just wish it away, or sleep and it would all be over.

 

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My journey taught me to trust my inner voice. To keep searching for an answer; a diagnosis. To never give up on myself, even though others dismissed me. Tough times show us who we really are, we find reserves of strength we knew nothing about.

Have you been labelled a hypochondriac? Have you given up looking for a diagnosis?

In part 2 I will talk about the day I got vindicated; when I finally received a diagnosis. It was the beginning of a difficult chapter, but it was far much better than not knowing what was wrong with me.

‘Big sis’

 

How I Became A Rookie Pharmacist

Up until a couple of years ago, I was a self-proclaimed, self-medicating, rookie pharmacist.

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Let me explain how it came about. A few months into my period, I started experiencing painful cramps. Every time I brought up the issue, I was told that the pain was normal. Though deep within me, I knew that pain that intense was everything but normal. In fact, I had monthly visit to the high school nurse, where I could predict the order of the day. She would quickly draw a picture of my uterus, explain that it was shedding its lining and hand me two Paracetamols as she sent me back to class.

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The emergency room was not very helpful initially, a painful period is not on the top of the ’emergency conditions’ list. I  remember ever so vividly rushing to hospital because of painful periods but being kept waiting for over two hours because it ‘wasn’t an emergency enough’. That is until my blood pressure would spike and the doctors would wonder how I was walking with all that pain.

To avoid the inconvenience of the hospital, I would self medicate when the pain would get intense. The method was simple: I would mix up all the remaining stock that I had. One Buscopan Plus, One Ponstan , One…. you get the drift. I was self prescribing a cocktail that left me in a happy place; read: pain free, albeit for a few hours. Then I would need a repeat dosage.

My poor body. What I didn’t know then was that this cocktail could have adverse effects on my health. I was young and foolish, I didn’t bother to read the pamphlets. I thought  I was being a good steward of my time, studying for exams instead of reading pamphlets in font 2 [ I understand that they are trying to fit a lot of information on a small piece of paper, BUT, how does that font size motivate the target audience to read it?]

Also, I foolishly believed that I wouldn’t have any allergic reactions, I always prayed that I fell in the percentage that did not display any reaction to the drug. The desire to be pain free overshadowed every form of good sense in me. I was desperate, I needed relief; ever so urgently.

 

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I am now reformed. I get a proper prescription from a certified professional and religiously read the medicine pamphlets; in fact, I get very irritated when I’m sold a few tablets in an envelope without a pamphlet. I could be slowly poisoning myself for all I know. I read on the internet and make an informed decision when I take medicine and know what to look out for in terms of allergic reactions.

Are you a rookie pharmacist? Do you take time to read medicine pamphlets? Have you experienced any allergic reactions to the cocktail of meds?

‘Big Sis’