She can impossibly be THAT sick she that looks so healthy. Not only does she look shamelessly healthy, she is also wearing fashionable clothing, and she’s smiling. She can’t be seriously ill!
She can impossibly be THAT sick she that looks so healthy. Not only does she look shamelessly healthy, she is also wearing fashionable clothing, and she’s smiling. She can’t be seriously ill!
When you have been sick half your life, experienced a lot of negativity and resistance in life. When you think you can’t possibly have to experience another downturn there’s another, and another, and one more… When it never stops going down, what do you do then? Do you give up? Do you become upset? Do you become angry? Do you become pissed? Want to blame someone else? Or do you become bitter?
Are you sitting there feeling that «hmmm, I’m one of those, or maybe all of them». Do you know what? ALL of that is normal! Completely – we’re only human.
This is something I’m sure everyone has heard about, or felt strongly sometimes or often. But here’s how the law of Jante goes:
1. You’re not to think you are anything special.
2. You’re not to think you are as good as us.
3. You’re not to think you are smarter than us.
4. You’re not to convince yourself that you are better than us.
5. You’re not to think you know more than us.
6. You’re not to think you are more important than us.
7. You’re not to think you are good at anything.
8. You’re not to laugh at us.
9. You’re not to think anyone cares about you.
10. You’re not to think you can teach us anything.
Hey Ingrid – I had a nightmare last night that Elias was going to be a big brother…. Well turns out that wasn’t a nightmare. That was just a plain fact – and not enough that he was going to be a big brother, we were expecting twins! My god this was really scary. Snåsakall`n was completely right. He predicted the twins when I was 18-19 years old, many years before I became pregnant with them! Talk about feeling “undressed”, I didn’t doubt for a second that it was two girls when we were going to get the ultrasound. I told the story to the doctors and the midwife at Levanger hospital. I’m sure they thought I was “mad”, but I was right, so I said “Would you look at that – Snåsakall`n predicted that many years ago!”
Snåsakall`n predicted the twins many years ago 🙂
The time after I was told I was pregnant again was a bit weird. I couldn’t breastfeed Elias any longer, so he never got weaned off breast milk. That had to stop right away and he was straight onto bottled milk. He handled it really well. Maybe he understood he just had to like it. I kept losing weight and was down 10kgs pretty quick. I looked like a walking corpse. Pale and skinny as I was!
During my twin pregnancy I was in great shape until it started getting crowded in my stomach. And to put it mildly; it is not very pleasant to be kicked in an infected gut! Luckily I had Elias to think about, so I put myself second the whole way. I was studying at the same time as taking care of a little boy; it took my mind off the “Crohn nightmare”. The body is put together in a way that the babies will take the nourishment they need, but then there’s not much left over for mum! There were many months I was barely there, to put it that way! But what don’t you do for your kids, both the ones on the inside and the one needing his mum every day on the outside. There was no time to lie down and be sick! I have a high pain threshold.
Two girls on the same side in the stomach – not recommended!
I had a few visits to the doctor and the test results weren’t showing what the doctors wanted, so that made the choice to move back home to Stjørdal a pretty easy one. I felt I was a bit too far away if something was to happen to me, and they know me the best at the hospital I’ve been going to for many years. Elias and I moved home to my family, and also with a glimmer of hope that the council of Stjørdal and Levanger Hospital would help me…
That was easier said than done. I could feel that my body was far from at its best, but it’s amazing what you can manage if you have to! My body was working in overdrive for several months. It wasn’t good, I can look back now and see that, but at that time I had no choice. Because where was my help???
I got to rent a large and beautiful house. It was actually the neighbour house of my grandparents – the family homestead Mettisun. “Hegra’s nicest homestead” 🙂 I grew up there so it suited me perfectly, then Elias could run down to his great grandparents every now and then. My parents also lived just a stone throw away, so this was perfect for me when it came to getting help.
But no-one could’ve predicted what was about to happen…
Slowly but surely I got worse. I had to just bite the bullet and apply for help! I got great support from my regular doctor and we started well ahead of time with the application because we knew it could take time, but I would need the help when the girls were born. There was no way around that. I knew that I’d most likely have to have surgery as soon as they were born, so we decided it was smart to be prepared ahead of time! We met resistance from the council straight away. We were going to need many rounds to fight that battle, and I had no strength left… In the end the meetings got worse and worse and I didn’t want to go by myself anymore. It was too hard, simple as that. From then on the meetings included my doctor, a nurse and a social worker from Levanger as well as the council representative. We believed surely then it would be clear what kind of help I needed… even though I have a journal big enough to kill a moose! NO UNDERSTANDING WHATSOEVER – my disease wasn’t defined in the category to receive help, I was too young so it became too difficult to help me! Even though there wasn’t even a sliver of doubt that I would be needing help for the kids’ sake if I had to go through surgery and become really sick. A mother will always do everything in her power to make sure her kids will be ok; at least that’s the case with me…
Time passed and summer became fall, fall became winter, winter became spring…
The council was still not accommodating. They were quite difficult and straight out rude. I had enough with taking care of Elias and make his life as good as I could – and I managed to do that. I was admitted to Levanger Hospital with Elias and my parents have been absolutely amazing to be there for me. I can never thank them enough for that! I had become too sick, and needed nourishment and medications. This was not optimal considering the twins, but we agreed that I had to get back onto the medications again. Something I was strongly against!!!
My mother heart was beating so strongly. But they promised me everything would be fine. They followed up on me closely. I was scared but I had no other choice but to trust the doctors. Time passed and I was in and out of hospital, had an ultrasound once a week and even more often than that the closer I got to my due date…
Me and my sister were pregnant at the same time during our first pregnancies. Me with Elias and she with Kristoffer. There’s only three months between our boys, even though they were born in two different years. But that’s how it is when Elias decided to come out on New Year’s Eve. We became really close after being pregnant together, and we still are. We were enjoying ourselves having coffee and went for many walks with the babies together. I don’t like regular coffee, so we always had to go to “Hos Oss” so I could have my latte and eat cheese cake. This was another one of those days – we were out walking on our way there. We were crossing the road and it was really slippery. I was walking Elias in the pram and did of course manage to fall face first onto the ice. I realised pretty early that this was going to end in disaster, the only thing I could think was “don’t let go of the pram” because if I did it would roll onto the street! I held on as tight as I could to the pram and fell straight forward onto my stomach. It didn’t hurt, but I got really worried for the girls inside my stomach. I got help to get up and was trying to “feel” if everything felt ok. I could feel nothing – Gøril kept cool and managed to calm me down. We were sitting down in the café when I all of the sudden felt discomfort down my back, and it didn’t stop either, it came and went… Hmmm, this was something I’ve felt before!!! I’m in labour but it’s way too early…
We drove home and of course Daniel was still in Bø as he had some mandatory courses to complete related to his studies. So Gøril had to come with me to the hospital. We took a cab, it was a long and difficult journey to the hospital. I managed to stop the labour, but I had to stay in the hospital for three weeks so I could reach the magical week where the girls’ lungs were developed. I had to stop labour nine times. I wasn’t allowed to sit up, I had to lie down or stand up for three whole weeks. That was one thing, but my stomach was being very difficult on top of that so I was on a lot of medications, and they wanted to remove the girls by a C-section. I didn’t want that, Daniel was too far away, and Elias had to stay with mum. It was tough to be Ingrid then, I can tell you that much! I really got to test my mental strength.
Surely now then the council would help me? Nope… I didn’t even get Elias into kindergarten… I was on a really long waiting list! Completely unbelievable – almost unreal! I got to go home once I passed the magical week because they weren’t going to stop labour again then if it started. Luckily by then Daniel was home, because I was only home for two days before it started again…
I remember it like it was yesterday! I was helping my aunt painting her new house. They have always been there for me so when I can I’m there for them as well 🙂 They were coming to pick me up, but I was just walking around with massive pains in my back. Not in my stomach, but in my back, so I just figured I had slept on it funny. I was really moody and snarled at my mum when she asked me if maybe I should call the hospital!!! NO – don’t talk to me, was my answer! My uncle then walks up to me… Ingrid – you’re in labour, get to the hospital.
A few hours later the twins were born 🙂
Their birth went quickly; it only took two hours before the girls were out. Daniel was as usual really supporting through my pain, and I can’t remember trying to hit him this time. 😉 He was amazing and helped out as best he could! I gave a natural birth and there is 7 minutes between the girls. Tuva was out and I was really relieved… Then the doctor says dryly, just one more to go then! Damnit I can’t do it!!! I got to breathe for 5 minutes before I had to start pushing again. Vilde hadn’t turned, so they were ready to take me into surgery… Not going to happen. I am not giving birth and having a C-section on the same day, no thank you! He told me I had to push really hard, else it was straight to surgery! That’s when I found the strength I didn’t know I had, and Vilde was born.
The time after that was of course really hectic. Three kids at 1 years old and 3 months old… Our home was quite chaotic, to put it mildly. We had great help from my family, and Daniel was there all the way till the girls were three weeks old, but then he had to go back to finish his studies. The girls were born the 7th of March 2004.
You should think by then the council had had plenty of time to find a solution for help. I organised another meeting, but still no solution. You can get depressed from less. I needed the old arrangement called “housewife help” they told me, but it didn’t exist anymore. What do you do then… I became sicker and sicker. I was just skin and bones and in a really bad shape. I lost my breast milk when the twins were 2 ½ months old. My body was completely done! I saw the doctor and had phone conversations with the hospital every other day. I was even admitted to the gastro department at Levanger Hospital with all the kids. I was back to running to the bathroom 20-30 times a day, blood and slime. And not to forget pains out of this world.
I had Elias climbing everywhere, he started walking when he was 9 months old, so he was everywhere! I often put the kids in a baby chair in the bathroom because that’s where I was… I clearly remember a specific episode where I was completely exhausted and had been running in and out of the bathroom several times. I could hear Elias in the living room and the girls were on the bathroom floor… I could suddenly feel that this wasn’t going to end well. I was leaning up against the wall while blood was rushing down into the toilet. We’re talking dark coloured blood; it was painful, worse than giving birth. I understood where this was heading… I called mum, dad, the neighbour, Daniel, my sister, everyone in my phone book, but no-one answered! I have to call the emergency number, I thought… I am going to pass out. Last try – grandma! Luckily grandpa picked up, so he came over and helped me and took care of the kids. At the time he was 70 years old and had just had a hip operation!
That same day I had to get picked up in an ambulance.
The message from the hospital was disheartening, but not unexpected. Crohn’s Disease was active and ravaging through my body. If I had gotten help from the council, something that was my right, this wouldn’t have become so serious. I can understand that they don’t know everything about every disease, that things are hard to understand. But not after all the meetings I had and all the information from specialists they were given. The only thing standing in the way of me getting help was a willingness to understand and money. It is so upsetting to think about that I get a knot in my stomach when I see the council representatives. I have actually experienced having to vomit after running into these people on the street. Should it really matter where in the country you live if you get help or not? I get so angry and upset that it was so hard to get help just because I have a disease that doesn’t show on the outside. If being seriously ill, 40kgs, mother to three and fresh out of surgery doesn’t qualify to get help, then what does?
I spent a few weeks at the hospital, got some medications, and finally managed to get back home to the kids. Daniel was travelling between Bø and Stjørdal every week, 700km one way. That is not ok. Still no help from the council! My mum went out in sick leave while all this was happening. This couldn’t go on any longer as it was wearing on both me and my kids’ health! Just so I’ve mentioned it, she was on sick leave for almost 2 years!!!
Where is the welfare system when you need it the most?
In one of my meetings the agent managed to ask me what my grandma, great grandma does for work… Can’t they help you? HELLO – it is not their responsibility to be free help for the system. They’re meant to be family. Talk about being rude and trying to pass on responsibility! I fought with the council for over a year before they approved someone to come clean my house for two hours every Tuesday and Thursday. Yes it helps, but it’s just a tiny drop in the ocean! I was so sick that my life was hanging by a thread when the twins were 8 months old. I had to have a colostomy, my intestines were completely consumed by infection, and there was no other way out. I had 2 choices – having a colostomy or find a new home at the graveyard! Right there and then I thought the last options sounded the best… I was completely exhausted, and the thought of such a dramatic change to my life was unbearable. I would rather die than have a bag on my stomach…
Isn’t a ostomy just for old people?
Fresh out of surgery, in pain and with a massive change to my life. I had to get to know a new body part. A new life with stoma is serious enough as it is. I had a boy and two girls I couldn’t lift. I couldn’t help with anything, I needed help myself. So Daniel wasn’t just a dad, he was my partner but he also had to be my support and my helping hand. He had to be a nurse and a house wife, and I was in need of care for many months! It’s not easy to fight against the system then – he had to give up on his studies. He had too many days of absence to get it approved. That was money straight out of our pockets that we never got back 🙁 We received no understanding, which makes it hard to trust and respect the system. The system had failed us completely. Because I was too young and had a disease they hadn’t dealt with before they couldn’t find any valid categories for us to receive help… Where is the logic? A family in dire need of help, showing that they really just want to get by, but are too weak against the people with power… The picture below shows how a big part of our life was spent, I couldn’t get anywhere. The kids were around me but I was too weak to hug them! I hardly had the strength to hold my phone or a glass of water. It hurts to not be able to do normal mum things, because you are half dead in a bed in the living room… You can see your life passing in slow motion – but you can’t do anything. I felt useless and worthless. If it wasn’t for Daniel and my family, this would NOT HAVE ENDED WELL.
When I look at this photo I can feel a lump in my throat and my eyes tearing up… I feel we’ve been punished and overlooked because we had a large family that they thought should be there for us…
What if I had received the support I had the rights to…
What if I had been taken seriously…
What if I hadn’t survived…
What if they had seen the family as a whole…
What if mum and co hadn’t helped me…
IF I GOT HELP IN TIME, WOULD IT HAVE GONE THIS WAY? COULD I HAVE AVOIDED HAVING TO GET A OSTOMY BACK THEN?
To be continued… in part 8 of my story “can it get any worse?”
This is my story – watch the teaser:
I have always liked music and I often listen to the lyrics. I use them as «therapy» if you like – but for me music is important. I’ve listened to this song a lot when the storm was at its worst. Put it on loudly and get lost in it! I think more people should do that!!! – make a difference – <3 Elias <3 Tuva <3 Vilde <3
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…
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.
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!
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.
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.
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!
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
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?
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
“There will be a separate blog post about painting – exercise – diet – clothes and my speeches after this series (My Story 1-10)”
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”.
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
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
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.
read and share… -make a difference – http://www.youtube.com/watch?v=bwOHWMm8tug
This is so hard for me that I unfortunately can’t go into details about everything!
I was struggling with the appetite, but that wasn’t really that unexpected when it’s incredibly painful when it comes out again. Not a lot of it comes out through the stoma any more; the wound on my stomach has of course burst open again… it’s huge. Not one huge hole, nope, there’s 3 gaping holes on my stomach, and this I have to endure for months. If you’re someone that has had stoma equipment fitted you’ll know this… Imagine how it is trying to close up a 15cm crater on your stomach! It has been burnt into my memory watching pills come out through a hole in my stomach and it still has 5mg written on it… it hasn’t been very effective then, to put it that way. I can barely stand thinking back to what I went through. Lots of bad memories. It is painful to look at photos and see what the doctors wrote and didn’t write in my journal. This is so hard for me that I unfortunately can’t go into details about everything!
The wound had to heal and they wouldn’t operate on my intestines before the wound on my stomach was better, so I had to go through a new period of just waiting. The days were long and the hours longer. I felt it was becoming harder and harder to be away from the kids, they would rather not come visit me in the hospital that often as they were sick of people dressed in white. I had nurses tending to the wound on my stomach – tried to make it as tight as possible but they were of course in a hurry so everything was rushed. And as you know haste makes waste, and the person having to bear the consequences was me.
I lost count how many times I got a leakage after the nurse had been there changing on my wounds… What do you do then? In the end you become sore, frustrated and pissed off. Daniel could see that when the stoma nurse and the regular people were there it was fine, but as soon someone from the staffing agency was there it all went to shits. I didn’t know them and they had never seen a wound like that etc. So I had to once again tell them how to do it and train them. I was so down that in the end Daniel started doing it himself. He was there day and night so it took longer for him to call for help than him doing it himself. IT SHOULDN’T BE LIKE THAT!!! He has done so much he really should not have had to worry about. But he could see that if things weren’t done properly they had to do it again straight after… And tending/rinsing the wound was incredibly painful. Worse than the first one I had.
The hardship and misery was wearing on us as a family, and I was set in that I was going to be home on Christmas Eve for the kids’ sake. That’s when I was told from my local council that they wouldn’t tend to my wound so I could celebrate Christmas in hospital instead. You can make that a nice enough celebration… Fuck, that’s enough! I can tell you there is nothing nice about staying in hospital for that long. I had my morphine pump with me and a wound I couldn’t trust. The holes on my stomach were so large at that point that nothing came through the stoma and everything came out through the holes. It was.. Well I don’t have to say anything more about it… My stomach was bright red and full of pus – nothing would attach properly then. I spent a lot of time in the shower or bathtub just to withstand the pain.
Then I could just rinse off the stomach content and there I would stay. I would sit there for hours. It is tough to think back to that time because it was challenging for everyone around me too. They couldn’t plan anything because they never knew if I was feeling ok, was having surgery or had another infection. I could be feeling great in the morning and be on my way into surgery in the evening, it turned quicker than the weather in Norway.
Then try to imagine how it was like trying to be a family. It was more important than in a long time to try and have as normal a Christmas as possible. I was going to be home for 2-3 days during Christmas. I had nurses to tend my wound and change the morphine and the tubes in the morphine pump. But could the council help? Nooo, I didn’t have cancer so I wasn’t in the right category to get help! The end of the story was that we drove twice a day to St Olav to clean my wound and change the tubes to the pump. That’s a 1 hour drive one way. Something that was very draining for Daniel. He almost went off the road twice in the 9 months because of lack of sleep. Nothing happened, but it very easily could have! It’s terrible to think back to that! The hospital couldn’t understand why there was so much “resistance” and no accommodation from my local council, and it was a really rough period for me. I was weak and had enough taking one hour at a time.
So Daniel thought there HAS to be an easy solution to this? All they had to do was show at the hospital to get training. The council of Stjørdal had a running offer for training… No-one showed up!!! That’s when you feel rather worthless. A friend of mine came and helped us “outside of work” during Christmas, so I didn’t have to drive in on Christmas Eve to change the tube in the morphine pump. What you have an example of there is bad treatment of patients and absolutely no understanding for my situation. Did I mention that while I was drugged down at the hospital incapable of moving, Daniel tried to contact NAV (the Norwegian Social Security Dept.) to get an agreement happening for me to not show up personally. The answer he got is terrifying. They refused to even meet with Daniel without me present to respect my privacy. That is rather difficult when I’m on a different planet, to put it mildly.. I’d like to point out that there are so many exceptional nurses out there, but they have people above them controlling them that really should not be there! Money and politics has the power, and that makes the people at the bottom of the food chain suffer… All respect to them for managing to come to work and work hard even though the people above them doesn’t understand shit about patient treatment.
The night before Christmas Eve was spent on the floor in front of the heater at mum and dad’s place. I was lying on a mattress with a plastic sheet and with several water bottles. Why? Because it was impossible to keep my stomach and stoma clean, so I was lying on my side letting feces run down my stomach to the plastic sheet and onto a towel I had there. Splashed water onto it so it wouldn’t burn my skin so much and dried it with a hairdryer after. No, I didn’t sleep that night either. It was unbelievably painful and an “out of body” experience, but I knew if I laid like that then Daniel could sleep a whole night without helping me with my stomach… I was incapable of turning or getting up without help, so if I had to go to the bathroom I had to call mum on my cell phone. Or yell out loudly. I was lying there waiting to push the button on the morphine pump. It had a timer so I had to wait 3 hours between each time, then I could finally have an hour with a little less pain!
As mentioned we tried to make Christmas as normal as possible with my family. Grandma Stina – my mum and grandpa Stein Morten – my dad, has been the rocks for me together with Daniel through this period. I am forever grateful for having the world’s best family! THANKS FOR EVERYTHING…
Tuva had a Christmas wish:
What do you want for Christmas Tuva? Mum will get you whatever you want…. (ouch, she’s going to tell me she wants a horse or something like that, I thought). Tuva: What I want the most is for you to get well mum….. Sigh, perhaps the only thing I cannot give her! Tears were running down my cheek when she goes: I can wish for a Hannah Montana wig too mum….
Everyone wanted to come visit and everyone sent me flowers – was I dying?
I was scared to death and tough at the same time!
I fought a battle every day and I think I did well. It would have been easy to give up at several points, but all I had to do was look around me and look at all the pictures and poems the kids had made for me and hung in my room. It gave me strength to battle on! The tears were there every day but I had to keep fighting. Not only for myself. I fought for my kids, Daniel, my family, my friends, and also for anyone that comes after me! NO-ONE SHOULD HAVE TO EXPERIENCE THIS!!! I wrote in a diary to document everything.
To put it mildly, the hospital journal does not match my diary.
To put it mildly, the hospital journal does not match my diary. And I wasn’t writing it by myself, the days I couldn’t write myself, mum, Daniel or the ones visiting me would write. I had my auntie, “the best auntie in the world An-Magritt” taking photos for me, so many things were written down and documented. I was so scared and unsure that I needed proof to show my kids that I wasn’t in the hospital voluntarily. I was seriously ill and I thought about them every day.
Mum loves you so much Elias, Tuva and Vilde <3
Finally the day arrived, all test results were fine and I had finally got a handle on all the infections. I had gained some weight and my blood pressure was ok. So they had approved me for surgery after many let-downs and push-backs. I never managed to trust that it would actually happen, but that was because I had been given the green light many times and had to suffer the disappointment when it didn’t happen. I understand why the doctors didn’t want to operate on me when my general condition was so bad. But there and then it felt really unfair, one day or one week or one month became SO much longer when all I did was wait! I had many rounds with myself and eventually I managed to get my paint to the hospital. I couldn’t do much with it, but it was nice to draw or paint a bit every now and then. Plus music – if I didn’t keep getting new music to listen to I would’ve gone completely mad. Music is great therapy, at least for me! I would lay there listening to the lyrics and become part of the song – it became a way to survive, to keep my motivation up and make the hours pass. I saw everything there was to see on TV, and in the end you are watching a re-run of a re-run… That is when you realise you’ve spent too long in a hospital bed 🙁
The day of my surgery had arrived, and I was as usual was more scared of taking the lift than the actual surgery. I was “drugged” down pretty heavily in my room before I was taken down to surgery. But I cried – in anger and frustration. We were getting closer to the lift and I panicked, I DID NOT want to take the lift (I have really bad claustrophobia). I became hysterical, cried and was on my way out of the bed, because I wanted to walk! The nurses could not convince me otherwise and I was not listening! In the end Daniel had lay down on top of me to hold me down “with force”, he put one leg over my hips and used both hands to keep me in my bed. I was so angry and very disappointed that Daniel would let them take me in the lift and not let me walk on my own. I was strong and I remember quite well putting up a good fight against Daniel, I was relatively strong and Daniel didn’t like that he had to hold me so hard. But I wouldn’t have been able to walk on my own, and to carry me down the stairs with all the tubes attached to me wasn’t an option. I was hitting around me and tried to get away and out of the bed, but lost against Daniel… My Daniel – that was a tough one to swallow. Daniel was completely overwhelmed by having to “hurt” his wife that much. We managed to get downstairs and I was quite distressed so they sedated me right away. I could hear from far away in the distance…
“Everything will be ok – it will be ok Ingrid. I love you”
I didn’t say anything back… I was too tired, disappointed and couldn’t take any more. I’d rather just not wake up. Wouldn’t it be best for everyone if I just died. All I am is a burden for everyone and I can’t take this much longer!
When I woke up I wasn’t sure if I was in heaven or if I was alive. I was unsure for quite a while… Until Daniel came in to me 🙂 Daniel’s beautiful eyes looked at me! I was as usual very angry, I normally am after surgery, it’s a side-effect from all the drugs. Not a good feeling, but that’s just how it is. Then I hear him say… It was successful because she is angry 🙂 hehe
They told me they had removed a lot of my intestines and given me a new stoma. Now I only had about 2 metres left of my small intestine. My large intestine was removed many years ago when I got stoma the first time. So you can believe that food passes quickly through the system, not much gets taken up so I don’t get much nourishment. The only positive thing is I will never get fat. 🙂
Everything looked like it would be ok. The surgery went to plan, but I was really far down. I was under heavy observation and under large amounts of painkillers for a long time. It took several days before I recovered and there were early signs that something wasn’t quite right this time either.
As many of you might know I was admitted to St. Olav’s hospital for 9 months in 2010/2011, away from my kids and away from Daniel…
As many of you might know I was admitted to St. Olav’s hospital for 9 months in 2010/2011.
In spring 2010 I was admitted to Levanger hospital with very sick intestines, the disease was living its own life. I had enormous pains and lost several kilos. We were in Turkey when I realised something was wrong. Nearly over night I could see a bulge on my stomach next to the stoma. It kept growing and growing and was red and hot. I understood it right away, but I didn’t want to understand! I thought, no not again… I endured through our whole holiday and never told Daniel how much pain I was in because I didn’t want to ruin our first overseas holiday as a family. It wasn’t very easy, I had no energy and was in constant pain, so just “being there” and helping out with the kids was difficult. I think Daniel was slightly unamused that all I wanted to do was lie in the sun… But I had no energy and this was a great excuse to avoid suspicion. I could just pretend I wanted to get a tan! The fact was I was in massive pain and was scared to death of being admitted to hospital in Turkey.
For a while I had had feeling that the doctors at the hospital in Levanger didn’t quite know what to do with me. I also didn’t get much follow-up in regards to check-ups etc. after my first doctor at the hospital left. Now I arrived with severe pains and very sick intestines. I could almost see the fear in the doctors’ faces. We had now reached a point where the doctors had “given up” on me and didn’t want to risk more surgeries on me, they were scared to. After consultation with the doctor and Daniel we agreed that I would be moved to St. Olav. I had very little intestines left and Levanger wanted to send me somewhere they could look at me with fresh eyes. That was completely fine with me as I felt Levanger had made enough mistakes by now! Retrospectively I have realised I probably had too many surgeries. They should’ve transferred me to St. Olav a few years earlier. But enough about that… I am going to try and share some of what happened during these 9 months at St. Olav. I can’t tell you everything because then PART 8 would be a whole book. I had so many episodes I feel nauseous thinking back on it. Les mer…
In yesterday’s local newspaper I «revealed» a secret and made myself so vulnerable that I’ve been struggling to finish reading the interview… One thing is for certain, I have NOT gotten any form of apology from the St Olav’s Hospital myself. I’m incredibly disappointed that it came by e-mail to the newspaper, Stjørdals Blad. It is easy in hindsight to apologise, it’s something everyone would’ve done to not lose face. But are they going to change anything? Do they contact me? Follow up on my case? I highly doubt it, but trust my words!!! Les mer…
As mentioned I was admitted to hospital 70 times over a very short period of time while in high school, so I had to re-do some subjects. I did that at Aglo High School. I was received very well there, and it gave me back the desire to study. There were no questions asked about my high absence, and instead they tried to work around me and make it as easy for me as they could. I was struggling a bit in the beginning because I was so keen and so goal oriented with my studying, and not everyone I studied with had the same passion, to put it that way…
In any case, I was decided that I would re-do all the subjects I was missing from Meråker and find a new path to follow! That was easier said than done. NAV – The Norwegian Social Security Department, stood in my way! You have to be fucking healthy to be sick in this so-called welfare country called Norway. And as if you’re not having a hard time as it is with your illness, you’re not going to feel any healthier or more motivated after a meeting in one of those offices. I’ve cried many times on my way up or down the stairs to visit NAV. I can understand very well that they don’t know everything about my disease and everything like that… But I have no understanding whatsoever for it being such a difficult and intricate system. If you’re unlucky enough to get the wrong person working on your case, you get little to no follow-up or information about what your rights are. Is it really meant to come down to the individual working on your case if you get help or not? THAT is a horrible feeling!!! This has been really physically hard on me. You’re sitting in a meeting thinking you’re going to get help and facilitation, but all you get is a cold shoulder and comments that would make a grown man cry.
“I want to make clear that this does NOT go for everyone I’ve met in these offices, just so I’ve said that.”
What’s wrong with you? You look so healthy? You’re always smiling! Shouldn’t think you’re sick, you’re always dressed so nicely and always with your hair and make-up done!
Hello, my name is Ingrid Anette Hoff Melkersen. I have the disease Morbus Crohn. I`m also known as “Crohnprinsesse Ingrid” (Crown Princess) on Instagram. I`m from Hegra in Nord-Trøndelag, a village in the small country of Norway (Scandinavia). And no, Norway is not the capital of SwedenJ. I`ve heard that a lot. I`m 30 years old, married to Daniel and we have three beautiful children together. Educated Interior Designer and have passion for fashion. Shoe fetish, don`t dear think about how many pair of shoes I own! Music is also one of my main interests but only listening to it that is. I work as a model and presenter. LONDON is my second home. Daughter number two out of four. We are four sisters with a span of 20 years between the big sister Gøril and little sister Sarah. I have a HUGE family. A family that I am very proud of. And almost all of us lives around Hegra – very few live far away. Therefore, we are much together, and for instance, a “regular” birthday celebration consists of around 40 family members. 🙂
Three words that describes me … fair, energetic and a bit “posh”.
I am more than just a little interested in sports and can easily be heard at a sports arena. I havebeen doing different kinds of sports all my life and you won`t find not a sports arena, field or ski tracks in my region that my dad hasn`t transported me to. I adore him for that, always being there for me. My childhood idol was Anja Andersen (Danish handball player)! What a woman- what a talent. When it came to football, it was Ole Gunnar Solskjær, my Norwegian hero and of course Eric Cantona. Glory glory Man United. Even if I was into several different sports, there was never any doubt that I had big plans to become the next Anja Andersen. For you young readers who do not know who Anja Andersen was. She was the Lionel Messi in the game of handball at that time. Best ever female handball player. At high school (Meråker videreående skole), there was a special program for students that wanted to be professional athletes in different sports, also handball. This school has produced many stars over the years and especially in cross-country skiing and biathlon. I my class we had Eldar Rønning. He is currently at the Norwegian national team in cross-country skiing and has won several World Championship medals. This school was going to give me the opportunity to make the best out of my talent. This was certainly my major goal as well as big dream. That was sadly not going to be the story ……
In my next blog post, you can read about when my whole life was turned upside down…