Chronically ill – fatigue – the battery analogy
Being chronically ill requires an incredible amount of energy of the body. As chronically ill you rest and sleeps a lot at times. Despite this the body never gets fully recharged and full of energy and in between there´s days when you have no energy whatsoever.
Throughout all my years as chronically ill it´s been really difficult for me to explain how fatigued, tired and lack of energy I have some days. here the other day I came across a video that explains this in an amazingly good way by comparing the body with a battery. The battery never gets fully charged – sometimes it´s right up to 70-80% (good days) and other days only at 20% when the day starts.
Unfortunately the charging time has no impact on how much energy I start my day with. Even if I´ve been on ”charge” for days I´m not guaranteed to start my day with 70-80% battery capacity. This makes it incredibly difficult to and at times impossible to plan and schedule both my days and onwards. Something which can be very frustrating for my family, friends but not at least me. This in itself is often more frustrating than the pain I live with every day because it´s never possible to plan my days 100%, but thankfully every day I learn a little more about accepting my body´s limited battery capacity and the rest it needs.
A lot of you may know someone who´s chronically ill or has fatigue. The video below explains in simple terms how they are doing and how it is to be chronically ill. I hope you watch it and get a understanding of what it is like to live with a ”broken” battery that never gets fully charged.
Here´s the video;
Everyday life
I´ve decided that in addition to tell my story I want to share small moments from my everyday life. Despite a life with chronic pain and a low battery capacity – and now a strict control over where I spend the little energy I have – I´ve found my own way of having a good everyday life. A lot of my good days I spend in the kitchen making healthy everyday food and baking. It gives me energy and lots of pleasure to make something good for the kids family and friends. And not at least I find it delicious to eat home cooked healthy food.
Yesterday I made delicious Breakfast/ Lunchbars. They are nice to keep around for an easy breakfast or a snack after school, gym, work etc. They are very easy to make and lovely to give away as a gift to friends. In importantly they are gluten free.
BREAKFAST / LUNCHBARS;
1 can og condensed milk (397 gr)
250 gr rolled oats
75 gr shredded coconut
100 gr dried fruits (cranberries, dades, figs, raisins)
125 gr mixed seeds ( pumkin, sunflower, sesame, lin…)
125 gr peanuts (salted/unsalted, almonds or other nuts)
- Preheat the oven to 130 degrees celcius
- Add greaseproof paper to a ovenproof baking tin ca 23 cm x 33 cm
- Warm the condensed milk in a pan
- Mix together all the other ingredients and add the warm condensed milk. Fold and distribute by using a wooden or rubber spatula.
- Spread the mixture into the tin using the spatula to even it out.
- Bake for 1 hour
- After 5 minutes cut up in pieces.
- When the bars are cold put them in airtight containers.
- They last for weeks, but will be gone long before.
NEW YEAR, BLANK PAGES…..
HAPPY NEW YEAR to all of you reading and following my blog!
I´m sorry for the long silence. It´s not my will power but my health that has stopped me….. Wishing for a better 2017.
2017 has just arrived with all that comes with it. We all start with blank pages that we can fill with the colours and contents we want. As most of you I have great wishes for those colours and contents of my 2017 pages. The outcomes of our wishes are often quite different from the realised reality however I will be very pleased if I get some colours and a few nice drawings on my blank pages. Anything is better than blank colourless pages without content. Small steps, small pleasures…..
My biggest wish for 2017 is to become better at writing and updating my blog. This is I feel I have an important story to tell and learnings to share. Since my accident in 2006 I have fought a lot of hard battles both personally and against the system namely against the Healthcare system, insurance company, legal system, Tax Authorities, Social welfare (NAV) etc. Through these battles I´ve won a lot of important victories and I´ve gained a lot of good and valuable experiences. Victories and knowledge I know others could benefit from. I aspire to continue to share as many of these learnings with you through 2017.
2016 was another hard year – both mentally and physically – which unfortunately has impacted my ability to write as frequently as I would have liked.
I try as hard as I can to continually self assess and learn to make my life better for my kids and me. One huge achievement is realizing that I need to consider myself and look after myself better. With this in mind I have been experimenting with a new way of living and how I use my energy. Since the accident I have suffered with pain, which takes its toll and tires me. Through 2016 I have been able to better accept my change of circumstance and realise that like anything I do not have an infinite energy source. So I now timetable my time into periods of energy usage and rest periods. The result is that I have more energy, less pain and I am able to enjoy my life and kids much more than I was able to before. I hope to continue experimenting with this technique through 2017. In turn I hope this will allow me to spend more time to write on my blog and hopefully help others benefit from my learnings and inspire others to do less and feel more alive!
Again, to all of you reading this – HAPPY NEW YEAR. I hope together we can ensure the pages in 2017 are filled with lovely colours and beautiful drawings.
LISTEN TO ME!!!!
The days at the hospital passed by. My body was bruised and all my muscles were hurting after the great strain my body got in the crash. It caused me to be in intense pain and I was on high doses of morphine and other strong painkillers.
Because of the bruises and pain I struggled to move and therefore I was completely dependent on help from the nurses – especially at nights. I was only able to lay on my back. To get some variation in my sleeping position I had to call the nurses several times at night to get help to higher or lower the bed. Most of the time this all went ok – the nurses were nice and polite and did all they could to help me.
One day I got a tip from my physiotherapist to ask for an extra duvet to keep under my feet so I would get some variation in my sleeping position. The following night when the nurse were there to help me with my bed I asked if she could help me to get an extra duvet. At first she sighed and groaned because she had to help me again that night with the bed….. Her answer and subsequent behaviour shocked me. I got a brusque answer that this was no hotel so she could not go off anywhere and find a duvet…. I thought “Is this possible!?” We’re in a hospital with beds everywhere! I was too shy and too afraid to talk back to her. In the end she managed to find a duvet, but she just threw it at my bed. I thought what’s wrong with her!? This is her job! If she doesn’t like it she should quit because as patients we are dependent on her help.
I was not the only one getting treated badly by her. Others in the room had the same experience. Therefore we brought it up with the Head Nurse at the ward and the nurse was told to stay away from our room. I (we) never saw her again…
Not a lot of days passed by before the complications started and when they did they came continuously…bleedings from the uterus, problems with my bladder and urinary tract, severe pneumonia, severe infection in my body, infection inside my tummy around the surgery wound/coils etc. Every day I had to talk with to new nurses and doctors. I was continually sent for new x-rays, CT-Scans, and examinations by gynaecologist, urologists and etc at the policlinics. I asked and asked to get some answers about what was wrong with me, but no one answered.
The only thing I was told was that they were struggling to get control over the high CPR I had (it was at around 330 – normal is around zero) – an infection in my body – which they thought was caused by the pneumonia
Every day porters who brought me to the different policlinics, x-rays and CT-scans, picked me up. Several times the nurses forgot to order a porter to pick me up or they forgot the time for appointments at the policlinics or x-rays. The consequence was me arriving late to appointments and the nurses got a hard time from the staff at the policlinic/ X-ray. Which again caused the nurses to take it out on me. They blamed me who was sick for their own mistakes about forgetting time and coming too late to appointments or for forgetting to book a porter. I suddenly started to feel like a burden to most of the staff at the ward. They were not used to having to relate to a “long term patient”. Most of the patients at the ward were out after a day or two. Suddenly they had a “long term patient” with lots of complications and just caused them a lot of extra work….
It ended with them sending me over again to a urologist – something I thought had to do with the problems I had with my bladder and urination. When I got to see him he started fiddling with an ultrasound device up by my spleen. Which I just couldn’t see and understand could have any connection with my problems with bladder and urination. It turned out I had an infection and fluid retention around my surgery wound around my spleen and that this was highly the cause of the high CPR they didn’t manage to get under control. He then told me he was going to extract away this fluid. Which meant a small but very painful surgery. I became completely put out and hysterical cause this was completely unknown for me. I just thought he was going to check my bladder – not do a painfully medical intervention! He was also surprised that I had no idea and was not prepared to this. Since I was not prepared for it he decided to postpone the medical intervention till the next day so both him and me could have a talk to my doctor – cause according to him I was supposed to be prepared for this!
The incident with the urologist made it all completely peak for me. I had had enough of being ignored and treated as a punching ball between different doctors and nurses who couldn’t communicate together and not at least with me. I became angry, pissed off, sad, frustrated….because even if I was a “long term patient” with more complications then other patients at the ward I was entitled to be seen and treated with respect. In addition they were supposed to give me trust in them.
I remember thinking – do we as patients’ just disappear in diagnosis, equipments, and investigations the continuous amount of new doctors and nurses we need to relate to. Equipments and factual knowledge is redundant. A patient is far more than 60 kilos of symptoms and illness….they are human beings with fears, pain and anxiety of the unknown…who needs to be seen, heard and respected….who needs compassion. It’s the doctors and nurses jobs to make sure of this. One is supposed to feel safe, have trust to the ones who take care of us and to know that we are taken care of and seen. They are supposed to there for us the patients and not vice versa….. My doctors and nurses forgot to see me and listen to my questions and me. I was ignored and had lost all trust in them.
When I was back at the ward I said ENOUGH IS ENOUGH!!! Listen to me! Tell me what´s wrong and why I´m being send all over from one policlinic to the other, continuously new x-rays and CT-scans without any explanation to why, why I don´t get prepared for painfully medical intervention and etc. I demanded that the doctor sat down with me to explain and tell me what was wrong with me and explain why they as doctors couldn´t communicate together.
Finally the doctor heard me, sat down with me, spend time with me, made drawings and explained all that was wrong with me, why I was send all over the place, what had to be done etc. About the medical intervention it was to get control over my high CPR and the infection, which the antibiotics wouldn’t cure.
Finally when I put the foot down the doctor both SAW and HEARD me.
So doctors can when they want to….have to…it only took him about 10-15 minutes…. It’s unbelievable that you have to get pissed off and angry to be seen….to get some respect…to make trust between me, the doctors and the others who were treating me.
If I hadn’t been as as I was to say stop I would have ended up with no explanation and with a painful medical intervention which it turned unnecessary. The next day my CPR finally went down and I didn´t have to do the painful intervention.
I´m not saying it´s easy to be either a doctor or a nurse in today’s society with all the demands there is to effectiveness and overflowing wards. They often have an insane work pressure and with the efficiency demands that are put on them it might sometimes…or often…be hard to find the right time and compassion by seeing and listening to the patient – but it´s still their job.
As I said they’re supposed to be there for the patients and not vice versa. To see and listen is a part of their job.
I know there are lots of good doctors and nurses out there with both a big heart and compassion and who manage to find the time to both see and listen to their patients, but unfortunately that was not the case and my experience in my first meeting with the healthcare system…and in the subsequent meetings my experiences with the healthcare system have not been the best….
They say you have to be healthy to be sick….the expression must come from somewhere….
No one to talk to….
The thoughts kept spinning through my head. The guilt, the feeling of emptiness and sadness wouldn’t go away….the thoughts just kept haunting me. I got a stronger and stronger need to find someone I could talk to about everything that had happened and all the strange thoughts that kept spinning through my head.
I was constantly crying…. The nurses and the doctors just ignored me and walked passed my bed when I was crying. They came back when I was done crying…. Being ignored resulted in feelings of guilt and loneliness to grow inside me…and new thoughts started spinning in my head… Why didn’t anyone care, stretch out a helping hand, and give me some comfort…
After all I had been in a very serious accident and in my head there had to be a system that could take care of me and help me to work out all the strange and bad feelings I had!? In the news we always read about the ‘big’ system that coordinates with trauma team and people who the injured can talk to. Should it not be like that for me as well I thought…
After a few days I finally managed to get the courage to ask a nurse if there were someone I could talk to. But….no! The nurse told me there was no one to talk to….
I thought, why not? I was close to dying in the accident and there were no support system around to help me – no one to talk to? If there’s a deadly accident or where several people are involved there’s always a trauma team taking care of the next of kind or the ones who were involved in the accident. I thought – Was I not important because I was alone in the accident and because I survived!?
I contacted a friend who’d been an ambulance driver to find out whether he knew if there was someone who could help me or who I could talk to. Luckily he found someone I could talk to – a fantastic person and communication partner – the hospital priest Lie Bjelland. When I asked the nurse to make an appointment with him she thought it was a great idea…
Unbelievable that I, who had been in a car accident and was seriously injured, had to figure this out by myself…..
The conversations with Lie Bjelland were amazing. Finally there was someone who saw me, heard me, understood me and reassured me that it was not unusual to feel depressed and have lots of strange thoughts and feelings after such serious trauma as I had been through. We had lots of good talks and in time I managed to relax and realize how lucky I had been.
I’d survived, the kids still had their mum, my parents 2 daughters, my sister her sister, my friends their friend….»
I survived so why wasn´t I happy?
Finally the pain was manageable and I had time to reflect and think about what had really happened – how serious and close I had been to dying. I had been only a few metres from dying….if it had not been for the concrete pillar standing in the middle of the central reservation I would never had survived.
The memories of the dreadful drive on the highway started to haunt me, flashing through my mind – the thoughts, the panic, the fear, the intense pain, the sounds, the smells….It was like a broken record – a song on replay – it was played over and over and over again….wouldn’t stop…it even haunted me in my dreams…
Everyone I was in contact with – nurses, doctors, family and friends – reminded me constantly about how lucky I was to have survived the accident and how happy that must make me. In it all I was able to see and understand how incredibly lucky I were surviving the accident and apparently without any permanent damage. I only had some cuts on one thigh and on the palm of my hands, three broken ribs, punctured lung and internal bleedings, which they’d manage to stop during the surgery.
All my injuries which were no longer serious, would heal themselves, disappear and not give me any permanent damage according to the doctors…
But…I didn’t feel happy…just very sad and sorry…I continually cried…felt so small, insignificant and I had so many thoughts and questions. Why me? Why did I feel such guilt for losing control over the car? Why did I feel so naked and vulnerable? Why was I more concerned about how terrifying it had been to face death than feel happy about surviving? Why did I feel so extremely alone despite the enormous support I got from family and friends…Why couldn’t I just be happy?
The intensive care….my first encounter with a life in constant pain
The night at the intensive care was long. My status was stable, but critical. I was connected to lots of devices, which measured my heartbeat, pulse, blood pressure etc. In addition I was given intravenous fluids and medications – but no pain relief. I had lost all control over my own life, it was now controlled and taken care by health personnel and devices.
It was hard to find any peace because the pain that was rushing through my body was so incredibly intense – it felt like the blade of a knife stabbing me over and over. It felt like real torture….I had to focus on laying still because it was hard staying in the same position. At the same time I couldn’t move because the tiniest movement increased the pain.
In between all “the torture” I begged and pleaded the nurse sitting by my side watching over me to help me deal with the pain, but she told me she couldn’t. The only thing she could do was place a cold wet cloth on my forehead. I remember how desperate I was and all the thoughts going through my head – why wouldn’t they help me? How could they make me stay in such intense pain when they had the opportunity to reduce it?
No matter how much I begged and pleaded I had to manage with only the cold wet cloth on my forehead….
The clock was still hunting me like I was a slave of time….the minutes were passing so slowly….couldn’t sleep…was just staring at the clock on the wall….it hardly moved… In between I thought I slept, but every time I looked at the clock it had barely moved…It felt like time was standing still…and I thought why isn’t the clock moving!?
Eventually the time passed and I was out of the danger zone and was transferred from the intensive care to the ward. Finally I could get some pain relief. It didn’t take many minutes before I felt the effect-my body could finally relax and the pain eased off. FINALLY – it felt so good! Both my body and I were at peace. Little did I know that this was my first encounter of a life in constant pain….
Later I was informed that it was due to the surgery and the 12 coils (metal rings) as foreign elements – around the disrupted veins in my spleen – was the reason they couldn’t give me any pain relief in the intensive care. They had to be sure that my body wouldn’t repel the coils….
«THE HOURS …Notify next of kind? Surgery? Okay, but would I be in time to pick the kids up from kindergarten?
Finally the ambulance arrived….everything happened so quickly…. a neck collar put on, up on the spinal board, over onto the stretcher and into the ambulance. I can still remember the pain running through my body, the problems breathing and the intense nausea… Before I knew it we were already at the hospital being met by the trauma team.
”Thereafter I remember the clock….the hours…the minutes passing”
Thereafter I remember the clock….the hour…the minutes passing…how concerned I was about everything except what was happening to me. I was in shock and thought it was just some scratches and minor injuries, even when they started cutting off my clothes and wanted to notify my next of kin… << completely unnecessary according to my own irrational thinking>>, I was supposed to go home as soon as they’d checked me over and they realized there was nothing seriously wrong. That shouldn’t take that long!?
“ Would I be on time to pick up the kids?”
I was more concerned whether I would be on time to pick the kids up from kindergarten and SFO (Afterschool Club) than about what was happening around and with me. Checking personal details, notifying my next of kin, taking blood samples, measuring my blood pressure, pupil checks, pulse check, etc. I was constantly looking at the clock, watching the minutes passing by….would I make it on time? It was not even 12 o’clock yet….this surely could not take more then a couple of hours…? Still – time passed and I thought…maybe I won’t be able to pick up the kids!? It then became more important for me that the hospital personnel managed to notify someone about picking up the kids instead of notifying my next of kin – just in case I wouldn’t make it on time.
“Before I knew I was on the surgery table. The clock was close to 1 pm….”
Suddenly I was starting to run out of time, I had to have X-rays, a CT scan of head and body…. They confirmed I had 3 broken ribs, a possible fracture in my neck, a punctured and damaged lung and internal bleeding. Before I knew I was on the surgery table. It was almost 1 o’clock now…. I was awake during the whole surgery cause every minute I had to keep my breath for up to 30 seconds – they did the surgery using continuous x-ray pictures. I was still watching the clock….time was passing. The surgery was taking so long.
I was done with the surgery around 15:30, and was then transported to the intensive care unit for the next 24 hours. I was not going to be on time to pick the kids up…. Luckily I´d made sure I had a back up plan for someone else to pick them up…..»
Do YOU stop if someone needs help?
Do YOU stop if someone needs help?
The entire August of 2009 the weather had been bone dry, up until Monday the 29th of August. On this Monday the rain was pouring down. Whilst driving on the motorway in the left hand lane the car aquaplaned and I lost complete control over my car. The car was sliding as it was on smooth ice and started an uncontrollable ride. It began sliding over into the fast lane and was about to hit a big blue van. In fear of crashing into the van I instinctively turned the wheel to the left and in panic hit the breaks, which made the car spin out of control even more. The car started sliding sideways in the left direction, before rolling around sideways several times. The car ended upside down but was still sliding upside down over the crash barrier towards the oncoming traffic.
“ During the minute I lost control over the car the seconds became like hours”
During the minute I lost control over the car the seconds became like hours. I remember every second from the moment I lost control over the car, all the thoughts, the fear, the pain, the sounds and the smells.
In these few long dramatic seconds my mind managed to divert in all directions – thoughts flashed by of my life, my kids, my work, how badly this could end, how catastrophically it would be if more cars got involved, how injured I could be….
I remember the intense pain I felt, the breathing problems, the sound of breaking glass, metal scraping against the asphalt, the fear of hitting other cars and causing damage to other people, the fear of ending up in a wheel chair….
Suddenly, as the car was sliding upside down and sideways over the crash barrier towards the oncoming traffic, I saw the cars passing by at 90 kilometres per hour. I stared death in the face – I faced certain death…. I thought that this would never have a good ending…. it would be over at any minute….SUDDENLY the car stopped….upside down against a concrete pillar on the central reservation.
I registered the complete silence. But then the shock arrived…first I noticed the smell of something burned, scorched….then the panic came back…..I thought I had to get out of the car as soon as possible before it would catch fire, start burning, explode… In a hurry I got my belt off and crawled out the window on the passenger side, over broken glass, loose items etc. Suddenly all my rational thinking was gone. I JUST HAD TO get out before the car exploded. Out to the help that would be waiting.
Finally out, but I was all alone…. no one had stopped to help me. Because of my massive internal injuries, breathing problems and nausea I had to sit on the ground at the side of the road. Then the next shock arrived….I was completely alone with lots of pain after staring death in the eyes, in desperate need of help and no one had stopped to help me. No one cared….
”No one stops”
How was this possible? It was a really busy day at the motorway with lots of traffic and cars passing whilst my car started its uncontrollable ride rolling several times and then sliding over the crash barrier….? Someone must have seen it? Someone must have driven past? If they were not able to stop at least someone must have called the emergency services??
The car was laying totally wrecked in the middle of the road and whilst I was trying to get help by waving to passing cars, people were just driving by …. No one wanted to stop! I decided to crawl back into the car again to see if I could find my cell phone and call for help myself. The car was a complete chaos of broken glass, loose item, triggered airbags etc. It was impossible to find my phone. I had to crawl out again and try once more to get someone to stop and help me.
Yet again I was sitting at the roadside, hurt and in shock waving to the passing cars for help, but the cars just kept on passing…. I´ve never ever felt so alone and isolated…. Wasn´t there anyone seeing me and caring about me?
Finally a car driving in the opposite direction stopped. About 5-10 minutes had passed since I lost control over the car….very long minutes that felt like a lifetime. Finally there was someone there who wanted to help me. When the guy called the emergency services about the accident it was the first message they got about it. No one else had called it in…..
When the first car stopped “ the bell sheep” got attention and several cars finally stopped to help me and to direct the traffic. Someone put a heat blanket on me, bandaged my cut and bleeding hands, talked to me and showing me they cared. Finally I could relax cause I got help and the ambulance was on it´s way.
This little incident of ignorance and indifference from the public, after being injured and in desperate need of help, has haunted me many times after the accident. For strangers it meant nothing that I was injured and needed help, they didn´t care, didn´t have time, were too selfish and too occupied by their own time, too busy to get to where they were going.
”You have a DUTY to stop”
For those of you who are reading this, it´s a gentle reminder, when you pass an accident please remember you have a DUTY to stop! According to the Norwegian Traffic Law § 12 you have a duty to stop to help people who’s been injured. If you don´t obey this duty you can be prosecuted and fined.
A few minutes of your time might mean life or death for the person you stop to help…. Without me or any others knowing at the time my stopwatch had already started counting down – cause my time was up…..I wasn´t saved yet cause it turned out I had massive internal bleedings…..»