Living with chronic pain

I hope you’ve all had a lovely Christmas, it’s been a pretty quiet one in the Cleasby household which has suited us just fine. We’ve had a few visitors but it’s been mainly just the five of us and lots of chilled days watching movies, playing games, eating cheese and ham and family time, so all in all it’s been a good one!

I was unwell on Christmas Day, I do t know whether it was a tummy bug or something I’d eaten, but I was up almost all Christmas Eve on the loo and spent the day very tired, poorly and done in. But as we had a quiet day at home planned, it didn’t really ruin anything. I couldn’t eat and spent most of the day laid on the sofa, but I had Timm and the kids with me so it was still a nice day.

Christmas Chronic Illness

And it got me thinking about how whenyou have a chronic illness, you really learn to live with an almost constant feeling of being unwell. I find it hard to explain to people how I have been in pain every day for the past six months, every single day.

I take two types of strong painkillers every day just to get through the day. And living with that sort of pain then becomes the norm. It’s a really shit norm, but it is the life I have.

I have two hernias, one parastomal hernia behind my stoma and one incisional hernia at a previous surgery site. They open up and my insides push outwards any time I’m not laying flat on my back and they hurt! The pressure is a constant dragging pain and then there’s also sharp pains as they go in and out.

I also have a 6.5cm cyst on my ovary and just found out that my Fallopian tube is also inflamed, swollen and filled with fluid. These hurt too, it’s a gnawing, aching pain in my groin all the time. My stomach is so swollen that I look 6 months pregnant, everything is so tender.

Due to the 7 surgeries in the past 5 years, I have a crazy amount of adhesions, basically all my insides are stuck together now, I have so many bits of mesh and pig skin holding my stomach muscles together that everything twangs and aches and stabs.

And I’ll be honest, it’s getting me down.

I haven’t walked my dogs for months. I’m in agony for days if I try to do anything more than sitting. We went to the cinema and shopping on Boxing Day and I spent 2 days recovering. I have to hire mobility scooters to go to shopping centres as I can’t walk far without feeling like my insides are going to burst out of my stomach Alien style.

But what I find really hard is that it’s so tough to explain it. I am waiting a surgery date but doctors feel that if I’m taking painkillers everyday that I’m ok to wait. And because I try my damnedest to keep on doing normal stuff, I can understand that people think I’m ok.

But im so fed up, I’m so tired of it all. I wake up every day knowing that the minute I get out of bed, the pain will start and though I’m stoned off my tits on codiene and nefapam through the day, it’s a constant thing.

If I really want to do something, I forego the pain relief so I’m not dozy and sleepy but that means the pain is even worse. It’s a constant balancing act of whether I take drugs and lay still or try and have somewhat of a normal life and do it in pain.

I know this is a pretty miserable post but I really wanted to try and explain what life is like when you live in pain every day.

Not many people can understand it, but think about a time when you were in pain, maybe you had a knee sprain or a horrid ear infection, perhaps you had an awful stomach bug, now try and think about how you’d feel if there was no end in sight to that pain, if that pain was your normal base level every day.

If im grumpy, absent minded, blank or ignore you or your texts or phone calls, please know it’s not personal. If we chat and I can’t remember the word I’m trying to use or just plain forget what I’m saying, know I’m really trying my best. If I cancel on our plans or just wont commit to them in the first place, know that it’s not that I don’t want to, it’s just too much to cope with right now.

Please just know that I’m trying my best

✌🏽& ❤️

Sam x

If you stand for nothing, what’ll you fall for?

There’s a line in the amazing Hamilton that says “if you stand for nothing, what’ll you fall for?” and it always sticks with me when I face the nasty internet comments for the work I do to raise awareness of life with an ostomy bag and chronic illness.

Because though I feel that I am only trying to put good into the world, I still get nasty comments and messages about my looks, my body, my morals and my blog.

I stand up and I make my voice heard, I hope to inspire anyone living with chronic illness to know they are worthy, they are valid and they matter. I share my story about my own illness, my own trials and tribulations so that others know they aren’t alone.

If you stand for nothing what’ll you fall for?

And sometimes that causes others to become so angry that they take the time to type out comments such as:

”This is disgusting, put it away”

”You think you’re a model but you’re gross” (I corrected the spelling on this one!

”You’re an attention seeker”

”Is nothing private any more, why would you tell people about this?”

I also get the odd ones that just call me a fat slag, but hey, we can talk about those another time!

So what do I stand for? I stand for every person who isn’t able to speak up for themselves, who are struggling to get through each day. For those living with incurable, debilitating and life long illnesses that affect them every single day.

I stand for myself, I speak my mind and share my journey through the toughest years of my life in the hope that some good will come out of it. That my story can help others.

I stand for love and kindness and hope.

I stand for the hope of a world of equality and understanding, where every person, whatever their impairment had the ability to live the life they choose.

And if I have to fall for these things, then I’ll do so with a full heart knowing I did my best.

✌🏽& ❤️

Sam xx

CEA cards – free tickets for a friend to come with you to the cinema

Did you know about the CEA card? It is a national card scheme developed for UK cinemas by the UK Cinema Association.

The Card enables a disabled cinema guest to receive a complimentary ticket for someone to go with them when they visit a participating cinema.

A complimentary ticket is provided on the assumption that the person accompanying the Cardholder is able to provide appropriate assistance. Illustrative, but not exhaustive, examples of such assistance might include having the ability to assist the Cardholder in:

  • Moving around the venue including finding and taking a seat;
  • Evacuating the venue in the event of an emergency;
  • Accompanying and/or assisting the cardholder in using the cinema’s washrooms; or
  • Purchasing refreshments.

People who receive one of the following benefits are eligible for the CEA Card:

  • Disability Living Allowance (DLA);
  • Attendance Allowance (AA);
  • Blind Persons Registration;
  • Personal Independence Payment (PIP); and
  • Armed Forces Independence Payment (AFIP).
  • Cardholders must be 8 years of age or older.

You can apply online or download the form and do it by post and it costs £6.

You can read more about it on the CEA website

 

✌🏽& ❤️

Sam

Hospital update and feeling anxious and panicky

I saw Mr Brown yesterday and the plan is for yet another surgery, it will be in the new year.

I have two large hernias and they are causing daily, almost constant pain. One is behind my stoma and one is in the old stoma site.

I also have a 6.6cm cyst on my ovary that I’m not sure if it’s causing pain or not as my whole abdomen hurts so who knows what is what.

Mr Brown wants to bring a new surgeon in to work with him, he specialises in complex abdominal problems and due to having so many surgeries, I’m filled with adhesions and scar tissue.

Theyll also be working alongside a gynae surgeon to remove the cyst and possibly my ovary, so it’s all hands on deck!

I just feel sick that this is happening yet again, I’ve really had enough and honestly it doesn’t get any easier, every surgery gets tougher and tougher. Ignorance is bliss when it comes to knowing what recovery is like and I’m so anxious and scared.

Ive used up all my sick pay with having two surgeries this year so any time off work will be unpaid which is super stressful, I know I need time to recover but knowing it will effect our income adds more pressure.

Im writing this at 4am as I can’t sleep for worry. I’m also coming down with some bug as I’m hot and cold and coughing and feel crap but when you have a chronic illness sometimes it feels like you can’t take time off for “normal” illnesses.

I know I’m just having a middle of the night panic but everything just feels very overwhelming right now.

I just want to be well.

Im sick of being in constant pain, it’s so draining. I’m sick of taking painkillers every day though I’m relieved to get some better pain relief today from the GP. But it’s a constant weighing up of being in pain and being able to think straight and taking drugs and feeling dizzy and not with it.

Its the first time since I started working for Scope when I’m actually wondering whether I can cope with it all. I love my job but right now it’s causing me to worry. I worry about how my illness affects my team, I worry about whether I can cope and I worry that if I don’t work, whether we can afford to live the life we do.

Theres not much positivity in this post but as always, it really does help me to be able to blurt all this out here so thanks for reading and I hope that in speaking about the tough times, it helps others to know they’re not alone.

I hope things feel a little brighter when the sun comes up

 

✌🏽& ❤️

Sam x

Girls like me don’t get to be Mary…

I remember the nativities at school, year after year, yearning to be Mary. It’s what I thought about all year. To be fair, I went to a catholic primary school where the head teacher was a nun so you know, there was a lot of bible talk all year round.

But I really wanted to be Mary. I imagined myself doing the slow walk alongside the donkey and Joseph with a tea towel on his head. The pillow up my dress looking holy and ready to birth the baby Jesus.

I knew blue was a good colour on me, and they’re in Bethlehem!! I’m the right colour surely!!!

Yet year after year, I was never Mary. And year after year I was devastated. I remember crying to the teacher one year when yet another blonde, pale girl was chosen to be the Virgin Queen. And I’ll never forget the words “girls like you will never be Mary”

My heart broke that day, I sat on the tiny toilet behind the stall door that ironically was half mast like a barn door and wept. I went home that night and prayed that God would make my skin lighter and my hair blonde.

Because even in those early years, I learnt that girls like me whose skin is brown and hair is black aren’t beautiful queens who get to have the pillow baby Jesus.

Worry not, I have since learnt that I’m amazing and I feel no shame at all of my Indian Mizo heritage. Dudes, I celebrate what a queen I am all the time!

One year i did get to play an elephant tamer.  But the outfit had these ridiculous see through harreem pants and you could see my knickers and everyone laughed at me. It wasn’t my finest moment and I cried because no one ever laughed at Mary.

Nish Kumar (NOT Patel!) wrote recently about unconscious bias after a newspaper called him Nish Pateland it made me think about the times when bias has affected my life.

I talked to friends recently about how I’m “just white enough” to get to hear everyday racism. Not the full blown racists who hate anyone who isn’t white but those friendly every day racists who would never accept it about themselves because they have a friend who is black.

A woman I stood next to at a craft fair all day before at the end she said she would have a “Chinky” that night. The person who says they’re going to the “paki shop”. The ones who tell me that it’s not fair how much the “coloureds” and “foreigns” get the same benefits as the “real British people” aka white people.

It happens all the time. And every time it reminds me of being told as an eager 6 year old that girls like me never get to play Mary.

Your words matter. Think before you speak.

✌🏽& ❤️

Sam xx