amber rahim

Chronic illness: the parts we don't talk about


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“Jobsworth” at the pharmacy

Ever heard that phrase “oh, that’ll be more than my jobs worth”? Well, if you are British you might have. It’s a joke about the types of unhelpful people you can run into in heavily bureaucratic environments.

Oh, I could help you but it’d be more than my jobs worth to do that

That’s the feeling I get when I call the pharmacy to order more medicines for F. Not with everyone at the pharmacy, just the one lady.

You see we have a running repeat prescription that covers the whole year. At the beginning of every year, F’s Nephrologist makes out the prescriptions for all her medicines and sends them to the pharmacy. Every month, we tell them what we need and they deduct it from the year total. Simple, I thought.

Yet this one lady gives us hassle.

Every time we call.

She:

“Do you have a repeat prescription for this?”

Me:

“Yes. We have a prescription to cover the year….. etc….” then in my head “It’s in your SYSTEM!!!”

Every time we go in to collect.

She:

“Do you have a repeat prescription for this?”

Me:

“Yes. We have a prescription to cover the year….. etc….”

Then she grudgingly hands it over.

Now I know she has protocols to follow. I know how strict the rules and regulations in the pharmaceutical industry are (I worked in exports to the Middle East and boy, the hoops you need to go through to get that job done!) But no one else at the pharmacy does this. They all know we have a year prescription.

But our daughter has been getting medicine from their for almost 8 years. And still she interrogates us. We have never not had a prescription.

I don’t think it is personal. Although, when you are standing in front of her steely, suspicious gaze in front of an entire pharmacy full of people, and she starts her interrogation, it sure feels personal.

So what kinds of drugs are we talking about here? With a really high street value? You’d think so, but no.

  • Sodium chloride (salty water, but special salty water)
  • Potassium chloride (different kind of salty water)
  • potassium citrate (I don’t know, but it helps her kidneys from turning to stone)
  • Nexium (to help with acid reflux.)
  • Indomethacin liquid (used in treating eye infections for normal people but it’s the main magic drug for Bartters peeps)
  • Vitamin D

So dear lady at the pharmacy, I do’t know why you give me such hassle. I don’t know what you think I am doing with this stuff. I couldn’t administer the lethal injection with the potassium chloride we get (I checked. Say what? Yes I know, it’s freaky. I was curious and wanted to know if we had dangerous quantities in the house and I had some time on my hands).

Dear lady at the pharmacy, please stop. Most days I can shrug it off but we have enough crap to deal with and traumas that we don’t need you to hassle us over something so meaningless.

Go find some other way to exert your power.

Try smiling.


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What’s different about chronic illness No.5: always sicker

Soemtimes it feels like the only reason we have school holidays is so that F can fit in her “get sick” time and not miss school.

Every holiday contains some days of sickness. Every one.

This December was no exception, except that it started with S. She got 5th disease, otherwise known as slapped cheek syndrome.

S was a bit itchy, achy, cried more easily but otherwise was actually kind of okay. I would describe her as being a bit off for a few days.

Then F got it. It just hid her harder. Because she is actually ill almost all the time, any other illness can really put her out of action.

She had to take to her bed, couldn’t keep on playing.

THEN she got impetigo on top. How cruddy is that? (pun intended).

My heart ached and I didn’t know what to say as she cried in bed, not understanding why S only got a bit of a rash but she, F, was sick in bed, with painful, itchy, sores all over her face.

You see, she knows. She sees the difference. She does always get sicker than her little sister. Than anyone else.

And she knows that it means that she has to miss out on fun, playing and parties. Not her brother, Not her sister. Only she misses out.

My heart still aches and I still don’t know what to say to that.

Do you?

holding-hands-mother-and-child2

p.s. she didn’t scratch her impetigo sores, not once. She had them all over her lip and chin, really like a beard. And she didn’t scratch them once. She is my hero.

 


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If the illness doesn’t get you, an arrogant doctor will (try)

I just want to preface this post with a statement: the majority of the doctors and health professionals I have met are good.  My daughter’s team are fantastic and are one of the main reasons I will never move away from Amsterdam (and maybe they don’t know this but they are not allowed to move house or change jobs either!)

This post is about that rare health care professional who leaves an impact, who just blows you away.  But not in a good way.  So here’s my story.

The first time that I ever felt defeated it was not because of the demands of the illness, it was because I was face to face with the most idiotic doctor that I have ever met.

At 14 months my daughter had her second operation; to place a PEG feeding tube.  A hole is cut through the  stomach to the outside and tube is inserted and held in place (by the plastic triangle you see in the picture).

PEG

The operation went well and a week later they removed the plaster that was placed underneath the white triangle (I only know what it is called in dutch, plaatje).  It all looked good, no infection so we went home.

At home I noticed that her clothes kept on getting wet.  At first I thought she had spilled something on herself but two clothes-changes later I realised that she was leaking.  It was like a magic trick: her clothes were dry, she drank from her bottle and abracadabra, her T-shirt was wet.  I did all the checks: triangle in place, not too loose; clamp was closed; no holes.  The PEG was ok but she was leaking directly from her stomach!  It is bad enough that her kidneys are leaky but now everything she drank just came straight out again in seconds!

Leaky bucket

How could we stop her dying from dehydration if nothing stayed in?  I know that this cartoon and these words don’t really go together but this illustrates what was happening (and I use humour to deal with almost everything).

I took her to hospital and she was admitted.  It was the weekend so we had to wait hours for the gastro specialist to come.  (A piece of advice – if you are going to get sick and go to the hospital, don’t do it at the weekend.  It’s like a ghost town).

Finally the gastro doctor came to see what this obviously crazy mother (me) was getting her knickers in a twist about.

I explained.  She looked at me like I was a moron and told me “they always leak a little bit in the beginning.  It’s normal.  The hole needs to close a bit and that takes a week or so”.

She wouldn’t listen to me; that is was a flood, not a drip.

She didn’t listen to my explanation about Bartters; that my daughters condition means life threatening dehydration and she can’t afford to “leak” for a week or so.

She patronised me some more and I cried.

She walked away.

I had no words.  I had been dismissed as if I was a panicky, neurotic mother who jumped at her own shadow.

We had survived 14 months of various calamities such as septicemia, frighteningly high fevers, gastritis, weeks in intensive care, non stop vomiting and I had stayed positive and pragmatic.  Now I felt helpless.  I knew that we were going to lose her.  Not because of the illness but because of arrogance and stupidity.

I was not going to let this happen!

I called the nurse and asked her to watch.  My daughter was sitting up and I gave her a drink.  The nurses eyes widened and her eyebrows shot up as my daughters clothes became drenched.  She looked at me with apology in her eyes and dashed off.

Investigations were done.  It turns out that they had cut the hole too big.  We came up with a plan: gauzes, regulate the rate of fluid with the feeding pump, only little sips for my thirsty baby.

It got resolved.  It often does.  But we need to be more than parents, more than carers.  We need to be crusaders, ready to withstand the lashes of disdain and condescension meted out by that special group of arrogant doctors who believe that just because we are parents, we know nothing.  It only takes one doctor like that to crush your spirit.

Most of the doctors at our hospital are great (please don’t ever develop your career and move on, stay here for us!) and my daughter was alright in the end.

But I will never forget the day when that doctor almost killed my baby because she was too arrogant to listen and too stupid to see.

So to all you good doctors and nurses out there I want to say thank you for listening.  We parents sometimes get in the way, ask a lot of questions, insist that you really do just check that again.  It’s our job.  Thank you for knowing that part of your job is to let us be heard.  We are a major part of the care team.


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What’s different about chronic illness? No.1: Sickness scale

It’s coming up to Christmas and I am taking 2 weeks off from everything.  My next post will be in January so with heartfelt gratitude I thank you for reading my blog and sharing this with me.

I invite you read my first blog https://amberrahim.com/2013/08/28/finding-my-daughter-behind-the-illness/ and with that spirit, enjoy the beauty of those in your life.  See them for who they are and cherish them.

Enjoy these last 2 weeks of the year and wishing you good health.

Sickness Scale.

My mother once gave me some advice for when your child is ill.  “Sometimes you just need to sit up all night with your children and hold them”.

I have found it to be true.  Sometimes your children are so ill that it comforts you both to do this: your child finally sleeps in your warm embrace and as a parent you are soothed by being able to give comfort.

But how long can you keep this up? One day, two?  Maybe even a week, if you take turns with your partner.  But what if they are sick for weeks, months and you just don’t know how long it will be before they are better?  You want to keep on holding them for as long as they need but when chronic illness is involved, your children are really ill, really often.  Their need for comfort is high and our desire to provide it is strong.

So you try to keep it up, you get tired and eventually a shift starts to happen.  They need to be more sick before you stay up all night.  It gets easier to go back to bed.

Your assessment scale for illness adjusts.

In the beginning they need to be on a 7-8 on the sickness scale to warrant an all nighter.  With a chronically ill child you will do the same.  Sickness level is 7-8?  Ok, stay up all night with them.  It’s the definition of that 7-8 on the sickness scale that changes, not the number.

If they normally throw up about 4 times a day, you notice when they do it 6 times a day and start to get worried at 8.  When they stop playing you know it’s really bad and maybe it’s time to go to the hospital.

(side note: yes, kids can throw up regularly and still carry on playing and having fun. My little champ has been doing it for years.  Well you can’t spend your entire childhood not playing!  Seriously though, I do not know how she does it.)

Your whole view of the world changes.  What’s normal?  What’s worth worrying about?  What’s serious?

From the outside we can seem callous.  “What, your daughter has just been sick and you don’t ask her how she is and give her a hug?”.  No, but I do teach her how to keep it out of her hair and off her clothes and shoes.   This is normal for her.  Do you pick up your toddler every time she stumbles? Or is that just normal?

When people don’t understand, and it is really easy of them to misunderstand, it can isolate you.  I don’t blame them.  When it comes to illness, there is little common ground between you.  With parents who also have a child with a chronic illness or people who themselves are ill, it is different.  It’s why we get on so well, even when we live on other sides of the world.  We share something that many of those around us don’t even know about.  We have a different sickness scale.

So next time you wonder “don’t they care?” or hear me say “she’s doing well”, remember: yes we do care and she is doing well, for her.

Our world is just a little bit different and you need to understand the context: our normal is not the same as your normal.  Take time to see us, really see.  You will see someone who says they are ok but is in pain.  That’s because they are ALWAYS in pain like this.  So yes, they are ok, but they are still in pain.

Take time to understand and let us in.  We want to connect with you.  We want to be understood.  We want to be seen.

So my mother is right.   Yes, I have just admitted that to the world, will I ever hear the end of it? (actually, I am proud to do so).  Sometimes you just need to sit up all night with your children and hold them.


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You know your illness is rare when…

1.  The doctor gives you medicine, hoping for the side effects.

There are no medicines designed for Bartters or Gitelmans Syndromes (B&G).  Every patient is on a mix of medicines known for certain side effects and we hope that you will “suffer” from them.  For example, diuretics can lead to increased potassium levels so most people have to be careful.  Us B&G folk?  That’s what we are hoping for!  We lose potassium like our kidneys are leaky buckets and we’ve got to plug the holes.

2.  Most specialists haven’t even heard of your condition

Sadly, many people with B&G are being treated by physicians who don’t really know that much about these syndromes.  Often you are the nephrologist’s first patient with this condition.  Yay! You get to be a guinneapig!

3.  You know everyone on the FB or Yahoo support groups by name

There just aren’t that many of you in the world.  Genetics Home Reference estimates it at about 1 per million people. How special is that?

http://ghr.nlm.nih.gov/condition/bartter-syndrome

4.  Prognosis is not known.

There is such limited information that they don’t really know what the future holds.  “If you follow your treatment, you will probably be ok”.  Um, hello?  Remember number 1?

Well, to be fair, who does know what the future holds for them?

Bartters Syndrome, the kidney disorder that my daughter has, is a strange illness and pretty young.  It is named after Dr Frederic Bartter who first described it in 1960.

There are some standard treatments but they don’t really know why they work – just that a lot of the times, they do.

We have had 6 very “interesting” years with the first 3 being a relatively experimental approach to finding a good treatment plan.  For the last 3 years her condition has been stabilising so now finally, at the age of 6, she is doing pretty well.

Now we are at the tough choice time.  Do we change anything in her treatment plan?

For the last 4 years we have been giving her potassium and sodium supplements on an hourly basis.  That’s right.  We give her medicine every hour, of every day.  (We are not martyrs to her illness, we use a medical pump at night).  It is tiring for us but we have developed an amazing ability to know when an hour has passed, without looking at a clock.  In my science class at school I couldn’t even estimate when one minute had elapsed.  Now I am a time master.

More importantly though, it interrupts her day.  Can you imagine someone coming up to you 12-14 times a day asking you to stand or sit still?  How she stays so patient with it I do not understand.

She is stable now, so we could change to say, medicine every 2 hours.  But I hesitate.

  1. Can I retrain my brain to this new schedule?  I might actually have to think about what I am doing!
  2. More importantly, what if this de-stabilises her?  Is the potential benefit of fewer interruptions to her day (and ours) greater than the potential risk to her health?

I just don’t know.  I think I’m going to enjoy this feeling of control a bit longer and leave things as they are.


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Taking empathy too far (sharing the pain, literally)

For years now I’ve been thirsty.

I have a dry mouth, I overheat easily and I get headaches.

My skin is dry and flaky.

I get more spots than I ever did as a teenager.

I am an expert in how to hydrate and know all the signs of dehydration.   That’s why I know that I have chronic but extremely mild dehydration.

I know I should drink more, it will make me feel better.

Yet I don’t.

It would be easy to say that I’m so busy looking after my daughter and keeping her hydrated that I don’t have time for myself.  In the first few months, that was probably true.  6 years later I can’t use that excuse.

Thinking about it now, I rationalise that it is helping me to build empathy.  The definition in the Oxford English dictionary is: “the ability understand and share the feelings of another”.  So is it helping me with this?  Well, yes.  I feel rubbish and so does she, so we are sharing.  Although her dehydration is severe while mine isn’t, I can better imagine what it is like for her.  So there is understanding.

Yet while I can understand more I do not understand everything.  How can I?  I’m not her.  I don’t know what this is like for her, through her eyes, her body.  I have never felt so dehydrated that someone saying the word “food” has made me vomit.

So what am I doing?  It makes me crabby.  My head hurts.  I become short tempered.

Why am I doing this to myself?  I have a suspicion that it is deliberate.

I have never actually consciously thought “how can I be hydrated when my baby suffers from chronic dehydration?”

Yet it is like I am punishing myself, denying myself, for being healthy.  It is hard to watch someone you love be in pain, be ill, with no end in sight to the suffering.  Sometimes it is the “chronic” part of the illness that is the worst.  When will it stop?  Never.

There is truth in this, I am deliberately denying myself.

It’s such a passive aggressive thing to do to myself and I am stunned.  I abhor passive aggression.  I would much rather have a heated debate, an argument, let things get messy, than be subjected to the stealth campaign of passive aggression.  If it isn’t out in the open, how can you deal with it?

So this is me bringing it out in the open.  “Hi, my name is Amber and I have been subtly sabotaging myself for the last 6 years”.

Admitting it to you, now, has given me a renewed sense of relief.  Phew.

How did I finally see it?  I have been working with my coach to create my version of a fulfilling life.  To find the courage to take a leap and choose my path, the path that is filled with things that make me feel good, that give me energy, make me happy.  It’s not a stunning path, nor is it amazing to anyone but me.  It is my path.

While walking on this path, I have been practicing opening my eyes and I am amazed at my discoveries.  The most recent one is what I am writing about today: my self sabotage.

I now drink at least one glass of water as soon as I wake up.  This small act alone helps shake off some of the grogginess of a disturbed night and takes some of the puffiness out of my eyes.  (It is the best beauty secret and it’s a secret because it’s practically free.  Rehydrate your skin?  Forget Olay.  Drink some water.  Oh and sometimes have something a little bit salty with it to help get the water into your blood where you need it).

I have days when I succeed and days when I don’t, but I am getting better at taking time to drink regularly, throughout the day.  The way my daughter does.

When I do this, the difference in me is noticeable.  I can focus, I feel less tired. I have energy to be more patient with my children.

Empathy is still important to me but I have finally realised that I do not need to be sick to have empathy for sickness.

And the guilt?  That is still there.  At least the self harming has gone.


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Husband and wife or shift workers?

A friend of mine noticed what I guess you could call a freudian slip.  She noticed that in my “about me” page I listed that I am a mother, daughter, sister etc but not wife or partner. (Don’t bother looking now, I have already updated it)

It was not consciously done (and I’m sure Freud would have a field day with that) but it did remind me of something else that happened when I became a carer.

You see, both my husband and I became carers all of a sudden.  We have no medical training but all of a sudden we needed to use needles, figure out how to use a feeding tube without drowning our little baby by accidentally accessing her lungs instead of her stomach, do a physical exam to assess how dehydrated our daughter was etc.  We were thrust into the roles of carer and nurse dividing up the days tasks between us.

In the beginning I was at home so I had the day shift.  My husband would come home from work and I would hand over, which would go something like this:

“Here, you take her.  She’s had her 4 o’clock potassium and needs her next sodium dose at 6 o’clock”.  I’m going to the loo then I’m going to get dinner ready”.

I might even have said, “Hi, how was your day?”  Far too often I was frazzled, covered in vomit and in desperate need of 5 minutes to myself and just said “your turn”.

I would go to bed early and get up for the 3 am rounds.  John would do the midnight and 6 am rounds.  We would both get a bit of sleep.

We were like shift workers, doing our bit then handing over the work load to our colleague.

This doesn’t leave a lot of room for a relationship.  You just don’t have the time or the energy.

It’s not surprising that so many relationships break down in these circumstances.  You need to feed and look after a relationship.  Spend time on it, put some energy into it.  When your every waking moment is consumed with worry, care and a million things that actually do have to be done otherwise someone will become (more) ill, then it is hard to look after your relationships too.

I was barely putting energy into showering.  I really didn’t care what I looked like and dressed in baggy puke stained clothes most of the time (there was a lot of vomiting going on).  Did I take an interest in what he was doing?  Erm, no.

My focus was: how long can we keep her out of hospital this time? and why did we buy a sofa with a fabric cover?  I need wipe clean surfaces – on everything.  I’m never going to get that vomit out.

Let me also clarify – did it matter what I looked like?  Not to my husband, but it is more a reflection of my state of mind.  I didn’t care about a lot of things, I was preoccupied.  I didn’t notice me and I didn’t notice him.

We were barely parents, let alone partners in life.

This has changed.  It has taken a lot of work and I am thankful that my husband is so stubborn that even when I told him to get lost, he didn’t.  It pissed me off no end at the time but I am grateful that he stayed.  I calmed down, we agreed we needed to do something about it.  That was not what we wanted but we needed to make changes.  We needed to remember why we got together in the first place.  We need to reconnect as people who loved each other, who had made this beautiful girl together and who were terrified of losing her.

Stress really tests a relationship.  Sometimes it is too much.   For those of you for whom this has happened, I share your sadness.  It hurts.

Sometimes we hang on, clutching desperately, until we start to get closer together again.

So I don’t know what it means, that I didn’t add that I am a wife or partner.  Maybe writing that first post just took me into the past where I didn’t feel like a wife anymore.  Maybe it’s a sign to myself that it’s getting busy again and that I miss my husband.

Whatever it is, thank you dear friend for mentioning it.  I think I’ll go and make a date with John.

Important note: this post is published with the full knowledge and consent of my husband.  It’s kind of like the EU – if I mention him, he gets veto rights on the blog.