My story part 10 – 10/10 “I want to break free…”

08/25/2013

This post is also available in: Norwegian Bokmål

I want to break free…

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Out of the bed… Sitting on the edge of the bed breathing… Lay back down again. Completely exhausted. Massive pains. Get back up again, struggle to get on my side and up to the edge of the bed to sit there a little while again. Breathe and stand up. So much pain. Then out of the bed, sitting on the edge, stand up, walk two or three steps…

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this was a loooooong and tough period I just had to get through. And the longer I waited the longer it would be before I got out of that fucking hospital bed! I clenched my teeth, fought and struggled, against the tears, despair and the pains. Out of the bed, breathing into a “flute” (an apparatus to get slime out of my lungs), out walking, further and further.

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Coughing was a nightmare on its own, it felt like my stomach was bursting open again. I got a pillow to hold against my wound when I was sitting up or when I had to cough. I almost always get a throat infection or a virus when I’m in hospital. Then I know a long time before I have to cough that it’s going to be really painful!

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I had only one goal…. Up and forwards for the kids’ sake! They would get their mum back – I was going home to be a fulltime mum! It was too painful watching them slowly but surely slip away from me… L My winner instinct was really showing at this point.

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Can you believe I thought I would be able to go to London to hold a speech before Christmas ”autumn 2010”!!?? I had been invited to speak at a world conference. There would be many doctors, nurses and other people attending, several hundred. I was on the invitation and the program, one of the keynote speakers! And here I was in hospital. Half dead with tubes in every direction. Strangely enough I still thought I would get there until the day before, that’s when I realised it wouldn’t happen. Many had told me “Ingrid, you won’t be able to get to London”. “You have to understand how sick you are!” I never give up before I really have to. And this was nothing I could do anything about! I wouldn’t even get through the security check at the airport. I really wanted so badly to go through with this that I wasn’t able to see I was too sick to do it. I don’t like to let people down, but that’s how it felt now. Two of the stoma nurses from the hospital were going to London. They came by my room just before leaving. It was horrible. It felt really unfair. This was meant to be my big final test and my big chance to be able to do more speeches like that.

They were very understanding and thought this was sad too. They brought my speech and my movie. Someone in London read my speech on my behalf – from my manuscript and showed my movie. I thought I had lost ALL my chances now. But would you believe my mailbox was full that same night! It took off completely – and I wasn’t even there myself J “ More about my speeches in a separate post on the blog” I had managed to touch a whole “world” with my story. And then I hadn’t even said a word about the chaos I was going through now.

 

 

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So 9 months in hospital was over… and the road back to life had only just started….. I was scared shitless and couldn’t quite believe that it was over. I did NOT trust that it was. Earlier I had a set-back only days or hours after leaving the hospital, so that this would be the “end” of the nightmare wasn’t easy to understand. I shielded myself. Expected the worst so I wouldn’t be disappointed once again. Not at least for the kids’ sake. ”DON’T tell them I’ve been released from hospital… they can’t handle another disappointment!” I had promised several times that I was coming home, then had gone straight back to the hospital. The kids didn’t even approach me towards the end, they’d rather not hug me or look at me. If I got a hug it was because EVERYONE said you have to give your mum a hug…. I could feel it wasn’t a warm hug, but a hug you have to give! Barely touching me and their face as far away from mine as possible, a hair towards the cheek kind of hug. My heart was bleeding, but I fully understood why they didn’t want to. It was their way of keeping things at a distance – of shielding themselves. Kids aren’t stupid!

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They clung to auntie Gøril or auntie An-Magritt. Grandma Stina – suddenly became mum…. That was really hard to hear. In just a few months they had been listening to my little sisters saying mum to their grandma, so it wasn’t so strange they all of the sudden called her that too. But it was really painful to hear and see. Because then I knew my kids understood the gravity of my situation. They had a backup plan and had a backup mum ready already. If they said it so I could hear they became all weird and apologised… poor kids L Sigh

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We sold our house while I was at St. Olav. A large and beautiful house in Sona, a bit east of Hegra. It was too time consuming and too much work having such a big house and garden. Daniel travelled a lot for his work, and when he didn’t travel he was at an office in Trondheim. So it became hard for me to keep up with the house in between my disease, and now it was really hard. So we were staying at home with my parents. I can’t see how we would’ve managed if we hadn’t done that! We were 9 people under the same roof. Everyone could help and everyone did. Why? Because they’re family, but also because what else were we to do? – with no help from the council?

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I remember so clearly the day they took out all the tubes from my body. Food, liquid, medicines and painkillers were taken out of my veins… scary, but good. I was sent home with the pain relief pump and my plan for getting off the painkillers, slowly and controlled by the pain care team at St. Olav. AN AMAZING NURSE BY THE NAME OF VEGARD – WAS MY SAVING ANGEL, SO IF YOU READ THIS – THANK YOU <3 I had a long schedule and close follow-ups for a few weeks. I was as usual stubborn as a donkey. I was going to show the nurse that “let me down” that I was stronger than she said… So I stopped using the pump long before I was meant to! Maybe not the smartest thing I’ve done but I was so proud of myself that I found everything I had of stubbornness and dug deep and found the best in me and fought my way through a few days/weeks without the pain relief pump! I was so proud of myself – I AM NOT A DRUG ADDICT!!! This was just to so I could have yet another proof that I don’t just take painkillers for the sake of it when I’m not in pain or have had surgery. Try for yourself to lay there with gaping, infected wounds on your stomach with feces running out of holes in your stomach instead of into the stoma. It is not pleasant. I am actually quite shocked that I’ve managed to go through this alone without the help from a psychologist or similar. I used exercise, music and painting to do get through it J

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“There will be a separate blog post about painting – exercise – diet – clothes and my speeches after this series (My Story 1-10)”

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I remember walking out from the hospital the last day, with no tubes, no tests, no wounds needing tending etc. with a mixture of pleasure and fear. I had become quite attached to some of the nurses and dependant on their help, so it wasn’t easy saying goodbye to that part. The safety net was gone. I had been in need of daily care for several months, and seen people dressed in white more than I had seen my own family. How could this go well? Me that had been there for so long. Me that could hardly bend down, go to the bathroom or get dressed by myself. Now I would be an even bigger burden on my family. Or mostly my husband Daniel.

I just have to once again praise him. If he had a tag at the back of his neck it would say “Made in Heaven”.

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The road back to life was tougher than I thought it would be. But I made up my mind. “I will get well again. I will get back up and back to where I was before.” I had no idea how much my muscles had deteriorated and how worn down my body was after 9 months in a hospital bed. The stomach had to heal, the body had to heal and I once again had to learn to live with a new stoma. This stoma was completely different to the first one I had. This one was far from “perfect”, the doctors won’t pull out a cm more of intestine than they have to when you have as little left as I do. The stoma wasn’t optimal, but functional. My surgery wound wasn’t much to look at either but this was insignificant at this stage. The hospital told me this was something they could easily “fix” later on. The plastic surgeons would create a plan for this when I felt better and my body was ready for surgery again. This wasn’t even a topic at that time, when the most important thing was to get patched up and get back on my feet. How it looked and other “small” things could wait. The hospital promised me this. My stomach looked horrible, so it was nice to look forward to having that fixed.

It was hard to get back to the old Ingrid. I wanted things to happen quickly, and everyone can understand that’s not how it works. I hate when things go slow. The expression “THINGS TAKE TIME” is one I don’t like…. But that’s just how it is. I was focusing on the goal and managed just fine. But it cost me. I always had to work really hard and maybe even harder to not get the “poor girl having to spend so much time in hospital” label.

Because the worst thing I know is people feeling sorry for me!

I was working out at Spenst in Stjørdal from day one after leaving the hospital. They took good care of me there. I could hardly walk 1 km on the treadmill when I first started. I thought it was ok to walk indoors so I had something to hold onto. If I was to pass out I had people around me. It was painful, incredibly painful. I was completely exhausted after just a few minutes on the treadmill. I was walking slowly, but eventually I managed more, I walked further, faster and in the end I even nearly ran. After 4 months I managed to do this without throwing up or be on the ground from exhaustion.

It took me nearly half a year before I managed to go for a 5km run in the local area without halting to a walk. I was SO proud. I participated in a run with my girls at Freequent J “Girls in focus” in Trondheim. They asked me ”do you want to come Ingrid? ” ”Yes I want to, I can and I will!!!” 

You go girl J

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8th of June 2011

«33 min in “Jentebølgen”… including this stop to pose with Jon… The ladies at Freequent are amazing!!! Wohoooo running was so much fun 😉 Sweaty and yucky… with a really handsome guy next to me! After 9 months in hospital that time wasn’t that bad?

It took everything out of me and I was recovering for days afterwards… but it was so important to be able to test my body and how it felt. It was also a way to feel alive. It was painful then and there, BUT so amazing afterwards. That feeling! I made it! I got my life back. I’m alive! Now all that’s left is everything that’s coming. Living life! 

Make a difference J

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I’m left with many bad thoughts and memories. They are slowly but surely coming back one by one. A lot that I thought I had forgotten or probably suppressed. But some things are like glued onto my brain… I still have a feeling it’s a story many people should hear. There are many things that happened and mistakes that could have easily been avoided if lessons are learned from my story…

This was only a small part of My Story! Read the rest of it in Part 1, 2, 3, 4, 5, 6, 7, 8 and 9 on my blog.

There will of course be more posts, so keep watching… who would’ve thought I had bigger and harder battles to fight after my 9 months in hospital L!!!

read and share… -make a difference – http://www.youtube.com/watch?v=bwOHWMm8tug