COPING WITH A CHRONIC ILLNESS (PLUS A PANDEMIC)

HEALTH, INSPIRING

Emma wrote about her experience of Endometriosis for MOAL a couple of years ago and it continues to be one that stays with me, so when she reached out with a follow-up piece on living with a chronic health condition during Covid-19 I jumped at the chance to share it.

There’s been a bit of back of forth re wordcount and timings, then yesterday I received a DM from her saying she had done the final edit but was sending it from the hospital where she had me admitted after a flare-up…

Oh… ok. So this is happening then.
How many weeks?
Shit on a stick.
This is going to be tough.
Think Groundhog Day, but with a 5 year old thrown into the mix who’s got the energy of a Duracell bunny, high on life and being confined to her home for the foreseeable future.
And then there’s me…
…the Mum who has enough chronic illnesses that pathologists get turned on when they see my case notes.
And trust me, there are a lot of case notes…
The thing is though, you never know when one of them will strike, or WHICH one will strike the worst.
You know shit’s really hit the fan when they all flare up on the same day.
And boy are they all flaring up…
The one that has taken the most from me, organs and all, is Endometriosis.
It has pushed me to absolute breaking point, and it shows no mercy.
Starting my periods at the age of 10 was the beginning of it all.
It was undeniably one of the most painful feelings I had ever experienced and the amount of blood…
… it was everywhere…
…I knew you bled on a period but Jeez Louise, no one said there would be a flamin’ Tsunami, all lasting for 14 days at a time only to come again on 14 days later.
Countless appointments followed to my GP where I was dismissed, telling me that ‘this is just what some periods are like’.
There I was put on the pill at 13, tried numerous types of pain relief, the coil, and had numerous ultrasound scans all looking hunky dory.
It was only when I was 20 I finally had my first laparoscopy where they diagnosed me with adenomyosis and a few months later another surgeon performed another laparoscopy where they found stage 4 Endometriosis everywhere.
There begins the unending circle of surgeries and being put on Zoladex injections that put you into a false menopause, that they also use to treat men with prostate cancer. These injections at first were great for the pain but wow…
… emotionally they were not so great.
There were times I would find myself sobbing for no reason at all. If my husband had taken my last chocolate hobnob though, here come the water works…
After years of being on these injections and 6 laparoscopies down, the Endometriosis had won.
Even whilst on the false menopause injections, I started to bleed, and the Endometriosis was still growing at an aggressive pace.
At the age of 31 I had a hysterectomy.
There will never be words to describe how that feels. I will always be eternally grateful that we have our miracle daughter, but there will never be the words…
In total it took 3 major surgeries to complete. My bowel was perforated (twice), my ureter damaged (twice), needing a 30cm stent (you guessed it, twice), a blood transfusion, a catheter for two weeks and numerous weeks in hospital.
The recovery was brutal, physically and emotionally.
All being told that my Hysterectomy will cure Endometriosis.
When in fact is doesn’t.
When still I am in this crippling pain, every…
…single…
… day.
Yes, I might not have a period anymore, but it is still very much there.
This is not just the type of pain that popping a couple of paracetamols and a tub of cookie dough ice cream will fix. Not even Netflix.
Although the cookie dough ice cream doesn’t go a miss…
It’s the type of pain that you feel mentally numb with.
Where you are in so much pain, you can barely function.
The type of pain you can’t even cry with.
It’s THAT type of pain.
Every morning I try so hard to get my ‘A game on’ and be the best Mum I can be, the best wife I can be and still support family and friends from afar all whilst I feel like my body is failing me.
My husband is working full time still (In our bedroom, that sounds so wrong. He’s doing phone consultations. Again, nothing kinky.) bar the Wednesday he has taken off every week as a holiday to try and help me as my body just can’t handle 5 days in a row solo parenting.
It breaks my heart that he has to do that. The Mum guilt is honestly heart breaking.
I want to be the type of Mum who can run around the park with her, not just watch.
There are so many times that our daughter will want me to play a game with her in the garden and I just physically can’t as the pain is just too much, so I’ll come up with some excuse and ask her to do crafts instead.
I swear if we do anymore crafts, we’re going to need to build an extension on the house for all her pieces of ‘art’.
Why don’t kids ever let you recycle the crappy ones at least?
There have been times where my husband has had an unexpected 20 minutes in the day free (very rare) and I have jumped in the bath and just quietly sobbed as the pain is just too much.
That or hidden in our pantry and eaten the secret snacks…
Thank God for elasticated waist bands.
When you have letters coming through the door with appointments being cancelled over and over again, telling you that treatments that you rely on so desperately are no longer available for the foreseeable future.
Anyone with a chronic illness, anyone who is waiting for surgery or for treatments so desperately needed…
…right now, we are feeling so vulnerable and there is NOTHING we can do about it.
That feeling of knowing that no matter how ill you are, no matter how much pain you are in, no family member or friend can help you, can help with your daughter…
… it is petrifying.
Speaking to your GP with a lump in your throat, desperately trying to hold it together whilst he is telling you for the third time that fortnight that he wants to admit you into hospital.
A recent MRI scan showed thickening of the bowel which is causing so much pain and inflammation. And now I’m showing signs of a slow transit bowel. But I refuse to be admitted to hospital because no matter how much I know I need to there is no one else to look after our daughter. Instead you’re put on steroids, 5 different types of medication for my bowel and antibiotics for a nasty UTI (that I often get due to the damaged ureter) and take Oramorph for the pain.
It’s the not knowing how long this lockdown will go on for.
So you take each day as it comes, every hour and you FIND that courage.
You listen to your body and when it’s telling you to CALM THE FECK DOWN FOR THE LOVE OF GOD, just pace yourself.
Through the pain, there are days where I do all the home-schooling, the baking, the playing, the painting…
… and then there are the days I just crash whilst watching YouTube tutorials on how to make cone hats as our daughter wanted to throw her teddy bear a Birthday party.
Life is tough right now, real tough.
But do you know what, so am I.

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COPING WITH A CHRONIC ILLNESS (PLUS A PANDEMIC)

Oh… ok. So this is happening then.

How many weeks?

Shit on a stick.

This is going to be tough.

Think Groundhog Day, but with a 5 year old thrown into the mix who’s got the energy of a Duracell bunny, high on life and being confined to her home for the foreseeable future.

And then there’s me…

…the Mum who has enough chronic illnesses that pathologists get turned on when they see my case notes.

And trust me, there are a lot of case notes…

The thing is though, you never know when one of them will strike, or WHICH one will strike the worst.

You know shit’s really hit the fan when they all flare up on the same day.

And boy are they all flaring up…

The one that has taken the most from me, organs and all, is Endometriosis.

It has pushed me to absolute breaking point, and it shows no mercy.

Starting my periods at the age of 10 was the beginning of it all.

It was undeniably one of the most painful feelings I had ever experienced and the amount of blood…

… it was everywhere…

…I knew you bled on a period but Jeez Louise, no one said there would be a flamin’ Tsunami, all lasting for 14 days at a time only to come again on 14 days later.

Countless appointments followed to my GP where I was dismissed, telling me that ‘this is just what some periods are like’.

There I was put on the pill at 13, tried numerous types of pain relief, the coil, and had numerous ultrasound scans all looking hunky dory.

It was only when I was 20 I finally had my first laparoscopy where they diagnosed me with adenomyosis and a few months later another surgeon performed another laparoscopy where they found stage 4 Endometriosis everywhere.

There begins the unending circle of surgeries and being put on Zoladex injections that put you into a false menopause, that they also use to treat men with prostate cancer. These injections at first were great for the pain but wow…

… emotionally they were not so great.

There were times I would find myself sobbing for no reason at all. If my husband had taken my last chocolate hobnob though, here come the water works…

After years of being on these injections and 6 laparoscopies down, the Endometriosis had won.

Even whilst on the false menopause injections, I started to bleed, and the Endometriosis was still growing at an aggressive pace.

At the age of 31 I had a hysterectomy.

There will never be words to describe how that feels. I will always be eternally grateful that we have our miracle daughter, but there will never be the words…

In total it took 3 major surgeries to complete. My bowel was perforated (twice), my ureter damaged (twice), needing a 30cm stent (you guessed it, twice), a blood transfusion, a catheter for two weeks and numerous weeks in hospital.

The recovery was brutal, physically and emotionally.

All being told that my Hysterectomy will cure Endometriosis.

When in fact is doesn’t.

When still I am in this crippling pain, every…

…single…

… day.

Yes, I might not have a period anymore, but it is still very much there.

This is not just the type of pain that popping a couple of paracetamols and a tub of cookie dough ice cream will fix. Not even Netflix.

Although the cookie dough ice cream doesn’t go a miss…

It’s the type of pain that you feel mentally numb with.

Where you are in so much pain, you can barely function.

The type of pain you can’t even cry with.

It’s THAT type of pain.

Every morning I try so hard to get my ‘A game on’ and be the best Mum I can be, the best wife I can be and still support family and friends from afar all whilst I feel like my body is failing me.

My husband is working full time still (In our bedroom, that sounds so wrong. He’s doing phone consultations. Again, nothing kinky.) bar the Wednesday he has taken off every week as a holiday to try and help me as my body just can’t handle 5 days in a row solo parenting.

It breaks my heart that he has to do that. The Mum guilt is honestly heart breaking.

I want to be the type of Mum who can run around the park with her, not just watch.

There are so many times that our daughter will want me to play a game with her in the garden and I just physically can’t as the pain is just too much, so I’ll come up with some excuse and ask her to do crafts instead.

I swear if we do anymore crafts, we’re going to need to build an extension on the house for all her pieces of ‘art’.

Why don’t kids ever let you recycle the crappy ones at least?

There have been times where my husband has had an unexpected 20 minutes in the day free (very rare) and I have jumped in the bath and just quietly sobbed as the pain is just too much.

That or hidden in our pantry and eaten the secret snacks…

Thank God for elasticated waist bands.

When you have letters coming through the door with appointments being cancelled over and over again, telling you that treatments that you rely on so desperately are no longer available for the foreseeable future.

Anyone with a chronic illness, anyone who is waiting for surgery or for treatments so desperately needed…

…right now, we are feeling so vulnerable and there is NOTHING we can do about it.

That feeling of knowing that no matter how ill you are, no matter how much pain you are in, no family member or friend can help you, can help with your daughter…

… it is petrifying.

Speaking to your GP with a lump in your throat, desperately trying to hold it together whilst he is telling you for the third time that fortnight that he wants to admit you into hospital.

It’s the not knowing how long this lockdown will go on for.

So you take each day as it comes, every hour and you FIND that courage.

You listen to your body and when it’s telling you to CALM THE FECK DOWN FOR THE LOVE OF GOD, just pace yourself.

Through the pain, there are days where I do all the home-schooling, the baking, the playing, the painting…

… and then there are the days I just crash whilst watching YouTube tutorials on how to make cone hats as our daughter wanted to throw her teddy bear a Birthday party.

Life is tough right now, real tough.

But do you know what, so am I.

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