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

6 replies
  1. Robin Mortiboys
    Robin Mortiboys says:

    Look on the bright side. I have MST twice a day and Gabapentin 3 times a day. That means I am only in agony. Then there is the omeprozole to stop the acid reflux and the Amitriptyline to help ease the pain so there is a chance I may get a hours sleep.

    Are you sure the problem you had over Christmas wasn’t a blockage in your bowel? I have had a few of these and I have ended up in hospital 3 times and managed a few times by living on water for 3 days while lying in bed. Hospital is a pain when they push a tube down your throat.

    We all have days when we feel like the whole world is against us. Sometimes I feel like taking my months supply of MST, Gabapentin, Amitriptyline as part of a salad. At least they think that you may benefit from more hospital treatment, see how you feel when they tell you there is nothing more they can do and you know that the pain is only going to get worse.

    Reply
    • Tony Mason
      Tony Mason says:

      I know how you feel Sam, Ive had similar issues for 3 years and have just had my Abdomen reconstructed on 18th December which im hoping and praying helps. Hernias are common and as such people who havent experienced the agnoy they cause can never empathise with what we go through every day. I hope when you do have more surgey it helps with your current problems.

      Tony Mason

      Reply
  2. Judith Hunt
    Judith Hunt says:

    Although I admit I can’t relate on your level of pain Sam, what I do know is that I read your blog and think….. how shitty your bad days are for you…. and that being said most of your days at the moment whilst you await the next op are shitty…. but then I think of what an awesome person you are and how extra awesome your family is and that the insight your messages give to people unaware of just what is involved in living with constant pain is like and hope that somewhere along the line your shitty times will get less and medicine or operations will improve to the point where you can have good days following good days and then more great fantastic days. Saying a big prayer and sending huge hugs your way….. Take a bow Sam…. you are a legend!

    Reply
  3. Matt Price
    Matt Price says:

    Hi Sam,

    I’d seriously consider swapping out the codeine to something else. It’s pretty useless as it’s a pro-drug and is converted into morphine in your liver. You can only convert so much at once – I believe the ceiling is 300mg and with a 4 hour half life. With morphine available orally its a wonder still use it!

    I find dihydrocodeine works better, it’s a semi synthethic opiate and doesn’t tend to give euphoria and the following crash.

    On top of my two Crohn’s surgeries this year, I’ve just been discharged from hospital today – for breaking my left arm into three pieces. This was late on the 23rd December, in over Christmas, sent home on Boxing Day to wait for a surgery slot. Get one Saturday morning when a 2 hour op turns into 4 and an overnight stay. I don’t know how my wife deals with it all!

    Reply
  4. Ann Murdoch
    Ann Murdoch says:

    Hi Sam. You’re an incredibly strong woman who has gone through, and indeed, is going through a lot. I’ve been there with crohns and understand. You never need to apologise for feeling down, feeling negative and just plain shitty!!!! It’s so totally understandable so express your good days and your bad days my dear. Wishing you a 2019 full of love. Annie.

    Reply

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