What I wish people understand

I wish people understood that I live my life in pretty much constant pain, that I survive by popping painkillers, high strength codiene every day.

I wish people understood that each day feels like an uphill struggle, that having a jangling, aching pain drags you down and that there are times when it’s just all too much.

I wish people understood the sheer amount of effort it takes to do normal tasks and the frustration that I can’t do what I want.

That when I do the things others do, it takes planning and supreme gumption and the knowledge that it will wipe me out and take away my ability to do other things.

That when you ask how I’m doing, it’s hard to know how to answer. The answer is generally “pretty shit” but I don’t want to bring everyone else down.

I wish people understood just how tough it is to work, that I push myself daily to get through the day when the pain, fatigue and brain fog make me want to crawl into a duvet and cry.

That to work means cutting back on pain meds and weighing up the benefits of pain relief with the foggy head, inability to drive and sleepiness and I have to make that decision every day.

I wish people understood fatigue. I’m not just “a bit tired”, it feels like a mix of the worst hangover and feeling like I’ve run a marathon. Every cell in my body is screaming at me to stop and lie down and rest but life still has to carry on.

I wish people knew I’m not lazy.

I wish people knew the guilt I carry every day, that my illness makes me not a good enough mum, not a good enough wife, friend, employee, human.

That I worry constantly that it will all get too much for those around me, that I won’t be able to do my job, that friends will get fed up of me cancelling on them, that Timm will get sick of looking after me.

I wish people understood that no matter how many surgeries I have, it never gets easier, it gets worse. It’s scarier every time, knowledge isn’t always a good thing.

I wish people understood just how fed up I am of being ill, being in pain, being tired.

I wish people understood.

✌🏽& ❤️

Sam xx

8 replies
  1. Derek
    Derek says:

    Stay strong! And some people do understand. I’m sure that those closest to you and who love you do. And I can understand too, because these days I have those same feelings a lot. I’ve had a stoma for more than 40 years after an ileostomy in 1976 for ulcerative colitis at age 21. Mostly I coped fine, but now in my 60s I have developed three fistulas that are really difficult to manage and so I now have four bags, not just the one I’ve learned to love over the last 40 years! The last two years have been hard, very hard. But still most hours of most days I can live something that approximates to a normal life. So I can empathise, and I wish people understood too, but I thrive on the people who I know do. Stay strong, you are an inspiration.

    Reply
  2. Jeanette
    Jeanette says:

    Stay strong just like Derek said..the people who love you do understand abd they are the people that matter most…..ive had an ileostomy for 8 years now and i know exactly whete your coming from …. life is just too hard at times but keep strong and have faith in the special people in your life to help pick you up when your feeling down 😘❤

    Reply
  3. Bruce Allen DeHaven
    Bruce Allen DeHaven says:

    Sam
    I wish I could give you a big hug of support right now. I, too, am a fellow UC sufferer, and, even though mine has not progressed near as far as yours, I understand what you are going through. On top of my UC, I am suffering from degenerative disk disease (waiting right now for multiple back surgeries to ensure I do not become paralyzed) have heart problems and osteoarthritis.

    Most days, like yours are filled with pain, fatigue, and depression. But, I know I have to push through it all and keep putting one foot in front of the other. If not, then I may as well curl up and die. I have cut down to working 4 days a week and then stay in bed for most of my three days off trying to recuperate from my workweek. The time I am not in bed is spent doing all the things around the house that my wife is not able to do…she, too, is disabled. They originally thought she suffered from MS, but have since (maybe) ruled that out and think she has been suffering from mini strokes that have compromised her ability to much.

    You are an inspiration to me and to many more for what you do. We are all proud of you.

    Much love and support from the U.S.
    Bruce

    Reply
  4. Carol Griffin
    Carol Griffin says:

    We do understand even if we are not where you are right now. I have stage 4 cancer and have had this ileostomy only since April. Before that I had 3 operations starting on Nov 3, 2017 and the first two were disasters. Not only did my first ileostomy bag leak constantly with the usual burning, bleeding of skin, but even the nurses couldn’t control things and two nursing companies just called one day and said that they would not come back. I understand the “good face” that we put on when any one asks us how we are doing. All I can say is you are such a beacon of light to us that we can only pray that you feel the good energy that we send your way. I’ve gone through the multiple drains and no clothes to fit over all of them, medical professionals telling me to be creative to sleep with all the drains (some were on my sides and one was toward my back and I dare them to deal with what we deal with.

    I’m lucky because right now there is little pain except for fingers, toes, and my back but that could change at any time.Do not be afraid to admit to your support system how bad it gets. Your family is strong and loves you. You are strong and help so many of us all over the world. Because of you and your trip, I took my first trip of 4 hours to visit friends for the weekend and my husband and I are planning a “bucket list” trip to visit all the states we haven’t been in next summer.

    You are one amazing woman and we appreciate and UNDERSTAND. I live in Virginia, USA

    Reply
  5. Ginny murphy
    Ginny murphy says:

    Hi Sam, I understand everything you talk about, however, maybe one day you could try to be more posituve. I spent twelve months recovering from my surgery in 94. Pain is with me everyday, I work full tume, brought up a daughter from 6 months as a single parent, now maintain four rescue dogs solely. I’m alive to tell the tale. My mum and dad are both departed but would love to have lived longer. I would dearly love to hear positivity from you for the ex uc brigade, people turn away from moans.

    Apols for my negativity, in my early days of following you, I generally thought you’d be a jolly good ambassador. Please embrace my critique and bring some happy thoughts.

    I know it’s hard, I know days can be bleak, however, our surgeons worked hard to try and provide us with a better life. No colon will change you, it’s a fundamental fact things will never be the same most people don’t care if yr in pain and they certainly don’t want to hear it all the time.

    Thank you

    Reply
  6. Ami
    Ami says:

    I understand Sam.

    You are a beautiful and strong woman, always remember it’s Ok to not be OK. I know it’s easier said than done about feeling guilty. But you are amazing with all that you do, ever since I have started I met you on Scope I have looked up to you. Reading your post made me cry, not out of pity but because of everything you do for Scope and I always think you are so positive but you’re actually going through hell.

    You’re a fighter Sam. You’re So Bad Ass. I may not always know the right thing to say but I am always at the end of an email if you need to talk and I really do mean that.

    Ami x

    Reply
  7. Bruce
    Bruce says:

    Ginny
    I is true that people do not want to hear the negativity from others. Only when it is coming from themselves is it ok. We are a selfish lot who thinks that it is only we who matter…our pain is worse than the next person…they should not bother us with their pain, negativity, depression, etc. But, we are all here for each other…in the good, the bad, and, especially, the ugly. We are a community built for each and every one to lean on when needed…and to help left up the others when they are down.

    Yes, we are all walking our separate path, but all paths lead to the same destination. It is within each and every one of us to help others reach their destination with as much hope and love as possible. When others stumble, we are there to steady them…to help them put one foot in front of the other. We cannot allow any to lose hope and give up.

    WE ARE ALL ONE.

    Reply
    • Ginny murphy
      Ginny murphy says:

      Hi Bruce beautiful articulate words! Sadly I fit all three camps, GBand especially U! I guess what I’m trying to say is…….be grateful to be here, be grateful to our surgeons who try to fix our broken bodies. I was so delighted to have someone talk about the unspeakable poop and the trauma of living with a body which poops so frequently and behaves as well as a teething puppy. Maybe to get our plight across, Sam could be a little more positive. …..ppl will listen…..as they came when Kevin Costner built the field of dreams. We need to cut out the embarrassment and stigma (not stoma) around poop, do it with humour and get in ppls faces (not faeces). I believe Sam is inspirational and has the ability to get out the and drive the knowledge further but feel she could be shut down for being a moaning minnie xxx

      Reply

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