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The Medication Cycle: When You have a Chronic Illness

I came up with this medication cycle idea after I started some new meds recently. Annoyingly, the amount of meds I need to take to keep my body functioning is rising. You might hear from people who are not chronically ill that you’re taking too many medications. There might be something about big pharma in there too. Cue eye roll*  What they fail to realise is that without these medications, you can’t sleep, you can’t eat, you can’t get out of bed etc. The list goes on. It is not unusual for a person with a chronic illness to have multiple illnesses or dysfunctions.

This week I decided to do a tongue-in-cheek blog post. I know some of the posts have been heavy of recently. However, these posts are so necessary. But, I promise I will continue to mix things up. I know that the experiences below may not apply to everyone. I have based this cycle on what I and a lot of my spoonie friends experience.
Day One medication cycle

The New Medication

You go to see your GP with some weird symptom. You’ve probably been dealing with this issue for a while but it’s been put on the back burner while you deal with other debilitating symptoms.

You walk out of the doctor’s office with a prescription and you feel relieved that you’ve been taken seriously. It might be weird to healthy people but sometimes the idea of a new medication offering relief from symptoms can actually be exciting. 

This is going to the medication that changes my life, you think. This is the one. You’ve probably said this 20 times before but this time, it’s going to work. Your life is going to change for the better. You’ll be able to work again. You’ll have a social life. Basically, you have unrealistic expectations about this medication. You are the kid skipping home from the toy shop, eager to tear open the packaging.

Day Two medication cycle

The Waiting Game

It’s not working. That’s it, your hopes and dreams are crushed. Your doctor did warn you that it might take a while for the meds to work but nope, they are just not working at all. You’re frustrated. You throw yourself on the bed in despair, like some Disney Princess who has been locked in a tower.

Day 7 medication cycle

The Side Effects

You start to notice the original symptoms are not causing you much trouble now but God damn it, you’re starting to experience some new symptoms. Alternatively, your symptoms have become much worse. You take out the perfectly folded leaflet that seems to go on forever. You eventually find the section in your language and the list of side effects is as long as your arm. But, there it is in tiny black writing, the symptoms you’re trying to treat are also side effects of this new medication.

The medication is used to treat dizziness and yet the front warning says “Warning: may cause dizziness”. Like, WTF?

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You develop a whole new host of symptoms. The medication that was prescribed to treat your overactive bladder is now causing insomnia and constipation. That’s right, first, you can’t stop running to the bathroom and now you’re lying awake thinking about all the times you could poop with ease.

The. Weight. Gain. Don’t even talk to me about the weight gain. As disabled people with chronic illnesses, it’s fair to say we don’t get out much so you won’t exactly find us hitting the gym five days a week. But also, we may not eat a whole pile of food thanks to some other medication you’re on or illness. Yet, you’re bigger than when you were in college eating 16-inch pizzas by yourself after a night of beer.

For once, I would like a medication that says “Warning: may cause extreme awesomeness”. You know, you wake up with the body of an Olympic swimmer, with a voice like Beyoncé and the baking skills of Mary Berry.
Day 14 medication cycle

Back to the Doctor

 

That’s it, you got to go to your doctor and sort this all out but, you’re so tired from not being able to sleep and you’re in too much pain from not having pooped for a week that the very idea of getting up, washed and dressed is the equivalent of a “normal” person running a full marathon. “Be graaaaannnnnddd”, you say. I’ll survive another day.Day 17 medication cycle

Back to Square One

It has taken you three whole days to work up the strength to get to the doctor’s office. You sit there in the waiting room anxiously. The memories of not being believed or your symptoms dismissed rise to the surface as they do after years of mistreatment (or rather no treatment at all).

You are finally called in and you sit there, waiting for the doctor to bring your file up and notice the new meds started the two weeks before. You explain that you’re having pretty crappy side effects from the news medications. This is when one of two things will happen.

  1. You’ll either be given a script for a new medication or

2.  You’ll be told that all this type of medication produce these side effects.

If it’s number one? Begin the cycle again. Two? You’re given new medications to treat the side effects and the cycle for those medications begin again.  Sometimes, you might be lucky and the new medications might just work.

Thanks for reading! Don’t forget to check out The Zebra Mom on Instagram, Facebook and Twitter!

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Being Chronically Ill means..

Hey there, hi there, ho there!

Hope everyone had a nice break over the holiday period and that you’ve recovered from all the travelling, cooking, early mornings and late nights.

In latest news I’m very excited to announce I have been asked to speak at a medical conference in Manchester this coming May. The conference is to educate and raise awareness of Vascular Ehlers Danlos Syndrome. I am truly honoured to have been asked to address medical professionals from all over the world. It’s a massive responsibility to represent the EDS community and I will do my best to explain the struggles we all face.

Anyway,  I just wrote this piece for a bit of a laugh. I’m not trying to be a negative ninny (in case somebody doesn’t pick up on my sarcastic tone), I will get around to writing part two of my trip to London shortly. I know some of you were eager to read about prices and places to stay etc.

Hope you enjoy my latest blog!

One day of fun=several days of a flare up.

You’ve taken your meds, you’re feeling as well as can be. You put on your glad rags and you make it into the car. Even doing that much your energy levels start to drop and your pain levels start to rise but God damn it, your going to this party. You’ve been staring at the same four walls for weeks now. Even if you have to walk in with a cane or arrive in your wheelchair, you are going to spread your wings and be a social butterfly for one evening.

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You manage to spend an hour or so catching up with friends while listening to how “you look great and you’d never know you were sick by looking at you” when all you wanted to do was forget you were sick for one night. But getting out is worth being someone’s inspiration porn.

You go home and fall into bed. This is where you stay for the next few days only crawling out to use the toilet or to grab a packet of crackers to stop yourself from starving to death.

You have more sets of PJs than actual clothes.

You spend more time at home than you do outside so it’s only natural you’d spend a lot of time in what you’re most comfortable in. While many of us would prefer to get dressed and glammed up to make ourselves feel normal, others just don’t want to waste energy on putting on clothes and make up. A lot of the time you choose between getting dressed or putting on a load of laundry or ya know, eating?

Hey! If these dudes can walk around in their house all day in their PJs, why can’t I?

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Your bed is your best friend and your enemy.

When you’re ill a lot of the time your bedroom becomes your place to escape so that you can rest and recover. Unfortunately you do end up spending a lot of time in bed and sometimes it can be for several days. You can often end up resenting your bed. While the majority of society love their beds, people who are chronically ill associate it with being in pain.

You often develop a less than desirable odour.

When you’ve been in bed for a day or so, you develop a very specific smell. It’s a mix of sweat, anguish and food that you’ve spilled on yourself. Getting up for a shower can be very tough on our bodies. Again, it’s about picking and choosing what you spend your energy on. Bathing or making dinner. The kids have to eat. The smell won’t kill em but starvation probably will.

When you do get round to washing  yourself you feel somewhat human again. But then you have to go lie down.

If someone were to shake you, you’d probably rattle.

You can never just have one chronic illness. No, no, no. There’s always a domino affect. Your main illness causes all sorts of weird and wonderful sub conditions. Consequently you take a whole lotta pills to keep yourself functioning. You’ve got one cupboard in your house that looks like a pharmacy, you have to brace yourself when you open it as more often than not, something falls out. People are always shocked to see it and know that if they get a headache while in your home you’ll have an array of pills to kick that sucker’s ass.

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A successful day for you is getting dressed and actually leaving the house.

Just grabbing whatever has been tossed at the end of your bed and leaving the house to buy food or collect the kids is enough to gush about when your significant comes home from work. Victory is yours!

You get annoyed listening to people crib about having a cold, going to work or having to go to out socialising with their friends even though they are so00 tired.

Many of us can’t work or leave the house when we want so don’t complain and tell us “I know how you feel” because you have a cold. Difference is you’re going to get better. Oh no! You have to go to a Christmas party? My heart bleeds for you.

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You have watched anything worth watching already.

Netflix and chill doesn’t mean the same thing to us. It literally means to binge watch shows while doped up to our eye balls on pain meds. Many of us will tell you we have spent many a day watching OITNB while curled into the foetal position because said meds aren’t working.

Till next time,

Z.M

x

11 Crazy Things People With EDS Have Heard

I spoke with some fellow EDS zebras about some of the down right crazy things they have heard from health care professionals, friends and family about their condition. Comment below if you have anything you’d like to add to the list.

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1. You have EDS because you’re vaccine injured.

No. Just no. A vaccine isn’t going to alter my genes. Shoo! EDS is genetic. GEN-ETIC.

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2. You have EDS because you’re possessed.

Seriously. This came from a chap who works in my local takeaway. Offered to make me herbal blends to cleanse my soul. Thanks, but no thanks, mate. Stick to making pizza, k?

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3. You obviously have Lyme disease. That triggered your EDS.

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Yes, there are some overlaps with EDS and Lyme but the latter isn’t going to cause your collagen to magically turn into a chewing gum like consistency.

4. You have EDS because you’re stressed.

I was told the stress of my wedding caused my EDS. If that’s true then EDS must be far more common! We should all stay single. Job done.

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5. You’re husband is a lucky guy.

*insert pervy wink here* Shockingly, this came from a Doctor!

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This is the extend of my bedroom antics, Doc. Seriously, I’m more likely to pop out a hip than to climax.

6.You’re sick because you’re in a bad relationship

This was in the Doctor’s office and my husband was sitting right next to me. The only bad relationship here is with this Doctor.

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I mean, talk about awkward. If a Doctor was genuinely concerned about the patient, wouldn’t they wait until their patient was alone? Nobody is going to admit they are in a bad relationship in front of the person they are in a relationship with. Anyway, the point is martial issues are never going to cause a person to dislocate a joint.

7. You’re too young to be sick

Yes, because that’s how chronic illness works. You wonder if these health care professionals obtained their degrees from the bottom of a cereal box. Do you even science, bruh?

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I’m too young? Hold on a sec while I tell my body that I’m not actually 90 years old.

8. You’re too short to have EDS

I think you’re confusing my condition with Marfan Syndrome.

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9. A holy man once surrounded my hospital bed with his followers they started to chant and pray.

Well, that’s just creepy.

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Here, while your at it, could you pray for me to win the lottery so I can pay for my very expensive medical treatment? Oh it doesn’t work like that? Silly me.

10. Your son has EDS because you’re a bad parent.

Like, what the actual F?

The child’s mysterious problems are from his mother yelling at him and letting him get away with too much all at the same time. This was said by a paediatric consultant!

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11. Someone assumed because I was in a wheelchair that I was mentally affected.

I was seen in the wheelchair while being pushed by my husband and this old man saw me in the chair and automatically thought I had an intellectual disability. We had our dog with us and looked at me and said (in baby talk voice, no less) “is that your cat? Hah?! Is that your cat? What a lovely cat hah? HAH??!”

 I just looked at him smiled and said nicely “yeah funny looking cat, no?! The poor man looked shocked. He just said, “have a nice day” and skootled off quickly.

What do you do in a situation like that? Laugh? Cry? Both?

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Has any thing like this happened to you? Let me know in the comments!

Share this with your friends and family to help educate them.

Until next time,

ZM

X

You know you’re breastfeeding a toddler when..

It’s National Breastfeeding Week! I love this time of year because my Facebook timeline is filled with beautiful pictures of children having milky cuddles with their mummies. Of course this week also means there will be heated debates under articles, such as this one. This week is not about debate though, it’s about celebrating and promoting breastfeeding. And boy, do we need to promote the sugar out of breastfeeding. In Ireland just 1-2% of one year olds are breastfed. The low breastfeeding rates is costing our Government approximately 800 million Euro each year. The HSE and World Health Organisation recommends all infants are exclusively breastfed and then fed along with solids until at least two years old.

Breastfeeding a toddler is so much fun! Nursing can be challenging at times but things change once your little baby becomes a toddler, breastmilk is no longer just about nutrition but immunity, comfort and so, so much more. Scientific studies show that the natural weaning age is anywhere from 4-7 years of age. The average weaning age world wide is 4 years old.

You know you’re breastfeeding a toddler when..

1. Your child finds new and interesting positions to nurse in. 

Before now, you had your go to position, whether it was laid back or a rugby hold, you had that position down. Long gone are the days when you felt so awkward, perfecting the latch and then meeting your baby’s eyes with a loving gaze.

Now? Feet in your face, feet in your mouth, feet in their mouth. Nursing has become a yoga extravaganza. You wonder to yourself “HOW THE HELL CAN YOU BEND LIKE THAT?!” In breastfeeding circles we call this act ‘Gymnurstics’. If only it was an Olympic sport.

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2. Your child thanks you.

Especially when you don’t ever expect them to. The fact that they know it’s something they love and appreciate, innately astounds you.

3. You feel less like a mum and more like a buffet table.

With child hopping from “dis side” to “dis side” every ten seconds, you start to wonder if your boobs provide different flavours! Chocolate and vanilla perhaps?

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4.You’re nursing two toddlers and

They argue about who is getting which boob and agree on a compromise.

5. You post this infographic every time someone says there are no benefits to breastmilk after 12 months:

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or this one

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It’s actually crazy how many health care professionals tell mothers that nursing passed 12 months is only for them and there are no benefits to the child. As you can tell from the graphics above, there is an abundance of benefits in full term nursing. There is also amazing benefits for mom too. Check it them out below:

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6. Your toddler has their own word for your milk.

My little girl asks for “boob” at 17 months but I have heard the cutest ways toddlers ask for milk like “bainne”, “mama milk” and”milkies”, to name just a few.

7. Nipple twiddling becomes a game.

No matter how many people think it’s “weird”, “gross” or “wrong”, there is a biological purpose for nipple twiddling. Children twiddle nipples or slap mother’s breasts to stimulate the let down of the milk. However, many toddlers turn this into a game by seeing just how far mommy’s nipples can stretch out. It’s hilarious until you realise you haven’t trimmed their nails in awhile or you get sprayed in the face with your own milk. Hey, at least you’ll have some awesome skin!

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8. You’re so amused when people find out you’re still nursing and they recoil in horror.

It’s very amusing to hear people criticise “extended” breastfeeding, especially when their own toddlers are sitting across the way from you with a dummy or bottle in their mouths. We are the only mammals that don’t let their young self wean and we are the only mammals that drink the milk of other species. It’s ironic really that mothers of breastfeeding toddlers are criticised yet full grown adults drink the growth fluid of calfs. Many people are under the impression that breastfed toddlers and older children are only being fed breastmilk. While yes, it is an amazing source of nutrition, children over a year do need to have a healthy diet of solid food in addition to their mummy’s milk. A lot of people also believe (without any basis for their thoughts) that breastfed toddlers will be “clingy” and will have psychological problems when they’re older. This is not the case at all. Studies show that breastfed children are protected against mental health problems and addictions.They tend to be higher in intelligence and more emotionally secure than children who were not breastfed.

Following on from that

9. When you’re asked how long you’re going to continue to nurse for.

When somebody is being rude asking me that question, I’ll usually answer with something sarcastic like “We will probably wrap it up when she starts college.” For anyone who is genuinely asking I tell them that we will stop when we are both ready. It’s a two way relationship. Feeding a toddler makes life so much easier. I’m not sure how we would deal with tantrums and illness without breastfeeding. It really is the answer to so many problems.

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10. When they learn how to unclip your bra and help themselves.

This aspect of feeding a toddler is simply brilliant, especially at night. If you’re cosleeping and breastfeeding your child will eventually learn how to get your top open/up and latch on while you’re still sleeping. Studies show that mothers who breastfeed and co sleep get more sleep than mothers who don’t. Who doesn’t love extra sleep?

11. Your toddler feeds their dolls/teddies/toy trains and even cats.

There is nothing sweeter than seeing your toddler pretending to be mommy and lifting their top to nourish their baby dolls. It’s amazing to see natural instincts kick in when their babies are “crying”. My own daughter recently chased the cat around the house with her top up screaming “nummy nummy num”.

If your toddler isn’t feeding their toy, they’re getting you to feed them. Lying down with your toddler latched on one boob and some inanimate object resting on the other.

12. Your toddler learns that other people have nipples too.

Recently my daughter realised Daddy had nipples too. She stared at them for a few minutes. Daddy and I waited to see what would happen. Of course I was trying to convince her that Daddy has milk too while he was trying to tell her he didn’t. After a couple of minutes, she opened her mouth (very reluctantly) and went for a taste. She was immediately put off my the hair that surrounds Daddy’s nipples.

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and finally

13. Your toddler and your husband have a lot in common.

The sight of bare boobies makes your toddler giggle, squeal and clap. Motor boating is also a favourite past time.

A final word..

Feeding a toddler brings so much joy but quite often comments made on social media or from friends and family can be really off putting. Women are called pedophiles and weirdos just for simply following their biological instincts and doing what is best for them and their child. It’s a sad reality that breasts are used to sell everything from cars to food but should a woman use them for their biological purpose, they are abused. Breastfeeding is in no way sexual and anyone who thinks so should take a class in Biology. Would you scoff at a dog feeding her 8 week old puppies? In human years, that would equal to a toddler. Even cows, when left alone will feed from their mothers for up to four years. We don’t respect our mammalian instincts anymore.

We rarely see full term breastfeeding in our everyday lives. Where we see it most is in films or TV shows and the characters are usually portrayed as really radical hippies or weirdos. Take Game of Thrones, for example.  The feeding of a 10 year old is pretty unrealistic. Children loose the ability to correctly latch at around aged 7. Ever wondered why they are called milk teeth? When a child looses their milk teeth, this is right about the age where they would naturally wean. Hence the natural weaning age is between 4 and 7. Portraying full term breastfeeding in a negative way does nothing but hinder the acceptance or normalisation of the act.

It is really only in the West that we have such a problem with breastfeeding.

“In Mongolia, there’s an oft-quoted saying that the best wrestlers are breastfed for at least six years – a serious endorsement in a country where wrestling is the national sport.”Read more about this here.

There is no reason you need to stop feeding your baby once they hit 12 months, unless you want to. If it feels right for you and your baby, go for it and feck the begrudgers.

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You know you’re breastfeeding when..

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You leave the house with only a spare nappy in the car and know you’re OK for a few hours!

When you breastfeed, baby’s food is ready to go. No need to faff about with bottles, powder or water. Many breastfeeding mothers tap  themselves on the chest subconsciously as if to check whether they have their boobs with them as they go out the door. Because sometimes they detach. Didn’t you know?

When you don’t care that the whole world has seen your boobs, but you’re a bit uncomfortable with anyone seeing your tummy.

So true. You see my boobs? Cool. You see my stretch mark riddled, squishy tummy? Not cool. But c’mon girls, we need to embrace our tummies and our post birth bodies. They are amazing, just look at what it made, your perfect little bundle.

When you just give yourself a little squeeze in public to check if baby must be due a feed.

Did that woman just grope her own boobs? Yes, yes she did.

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You choose clothing based on access to boobs.

Shopping will never be the same again. There are three very important questions you need to ask yourself while you’re looking for your Autumn/Winter wardrobe: Can I get my boobs out in this easily? No? Ok. Can I put a string top underneath it? No? Ok. Realistically will I actually bother having it altered to make it boob accessible? No? Put it down, and move on. Sorry.

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You can get out of cleaning up after dinner by announcing the baby needs a feed, he is only too happy to go along with the lie.

Dishes? Oh, what’s that, baby? You need a feed? Sorry hon, baby’s gotta eat! Cue the resigned eye roll from himself.

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When you are bursting for the loo but baby is falling asleep while latched on!

You sit there wondering how you are going to explain to your significant other that you have soiled yourself. He doesn’t get that one simply doesn’t unlatch baby for a lavatory visit. Are you mad?! But over time you develop great skill at holding it in. Nobody can hold it longer than a breastfeeding mum. Boo ya.

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You regularly weigh your boobs in your hands to see which one is more engorged.

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Did she just grope her own boobs, again?! Yes, yes she did and she will do it several more times throughout the day.

Your first aid space is gathering dust ‘cause breast milk fixes everything.

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Stuffy nose? Breast milk! Gunky eye? Breast milk! Nappy rash? Breast milk! They don’t call it liquid gold for nothin’!

You start quoting WHO (World Health Organisation) when you previously had no idea who the WHO was.

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Whoooo are you? Who, who, who, who? Yes, that is the CSI theme song but it works here too. A lot of breastfeeding mothers are often asked are they “STILL” feeding their children. A mother’s first response will usually be:
“WHO recommend that all babies be exclusively breastfed for the first six months and then continue to breastfeed, with solids for at least two years.” Science, b**ch!

When you’ve accidentally flashed the postman /delivery driver on more than one occasion and he starts leaving packages outside the door instead.

You have now become known as “the woman with the boobs.” We suffer from baby brain, ok?! Even spending many years breastfeeding won’t make you immune to the inevitability that one day the postman will run scared from the ‘puppies.’ Most of the time, we remember to give ourselves an ole feel to make sure the girls are back in.
Yes, she did just grope herself…again..

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