Pain relief a diagnostic torture

 

In the end of October I visited the pain relief doctor. Nice word for Scrabble or gallows I just thought of. I was scheduled at the end of the afternoon and, as an expert by experience, I know that after a half-hour walk out you get a painful butt from sitting on the wrongly designed chairs which are specially designed for modern waiting rooms. When I am finally called in later I will be offered a cup of coffee immediately I hope (to ease the pain of waiting?) That hospital humor has never really suited me and I also think it is just schadenfreude really. The pain relief doctor has already explained at the consultation what the intention is. I will get a ultrasound guided Nerve Intercostal Block . I also went through this whole process in 2008 and the treatment is not very exciting although there are some risks of hitting a lung.

Back to the call and pain relief consultation for a moment. I was called if I could be at the hospital in half an hour and have a physical examination. Yes no problem I live ten minutes from the hospital so hop in the car and report. The doctor introduced herself and immediately started to write down my appearance (statuesque man, just a little too fat and pain on the left rib and of course), as it should be, a round of psychological questions was done. This is done to check that it is not imaginary pain. Quite a few "healthy" people seem to suffer from this these days. (I too use the Internet to look these things up).

The psychological examination was completed and we moved on to the physical. After explaining where the pain areas are located, they check pretty hard where exactly it hurts. I could cry and felt like I was about to go completely out of the conscious world. And no I am not very squeamish. I was seemingly able to convince the doctor quickly enough that I was going through hell and the examination was stopped for a while. It was moved on to the back to see if something could be wrong here. A number of suggestions for treatment were made and I had already indicated myself to have it treated as soon as possible. For this I will be referred to the pharmacy for pain relief medication to get through the coming time and some so-called blocking will be done on the rib on the left side at the end of the month. Once I left the hospital, I almost choked with pain in the car and we drove home. I could cry.

And then of course you have to keep eating, after eating a plate of macaroni, I vomited it out into the toilet bowl within 2 minutes under heartfelt apologies. The all-consuming pain couldn't even keep my stomach contents in place. Like being stabbed and the wound just wanted to remind you.

If that pain alone can be cut in half then I am already happy. After so many years I am quite used to it, I must say, and I have always told myself that my environment should not be a victim of my problems. But God Almighty what a pain.

 

 

And finally yesterday we had our adventure at the pain clinic and I must say it is just a strange idea, that for once it doesn't hurt anymore like it did for more than a while. It remains to be seen because at the moment there is still residual pain because the syringes have been inserted and this gives a more severe pain than before but as a reasonable positive guy I am hopeful again, after a week I should be able to do everything again. And then soon I will finally be able to throw myself into some light housework again without complaints afterwards.

I have been sweeping the room whistling a song again that did not happen for many years. And that's quite an amazing sensation when you've had to put the brakes on yourself for so long. I feel like a full person again although I will remain a "cripple" to the rest of the world. But yes, I can only rejoice and put on my old-fashioned bad boy costume again. I am going to do lots of naughty things again. The doctor did warn me not to overestimate myself now, and that it is not certain until the prednisone wears off. It is and remains junk but yes if it makes life less painful. (In the physical sense.) Now to deal with the aftermath of the pain which will be there for about a week as they stick a big needle in you which will give some pain as they shoot in some anti-inflamatorial meds and after this my life will be a big party again. Mentally seen there will be some party poopers and of course the medical bills will not be very small luckily we are insured for this. Anyway there will be those other pen licking ass- #@#$&@@#$ like the tax authorities for example have to cooperate a bit. So there will be some challenges during the holidays.

To give a bit of a picture of what the treatment is here is a link to a You Tube movie:

 https://www.youtube.com/watch?v=m--qyUUzH5U

 

The Old Sailor,

The day that something snapped in her brain

Dear Bloggers,

If one day you have the feeling that something in your brain just snapped.
I take care of my wife in times for better and for worse that is what I promised her when we married 20 years ago. And now that has become reality.

"She was still in bed because she had to get up later than me. I was up at 4.30 in the morning to go to work as I am a commuterbus driver. She talked about a snap in her head that she had felt on her job yesterday but there was nothing strange to see. It turned out that she could not get out of bed. She had woken up from the alarm clock and could not filter the sound properly. It's like there are ringing a lot of bells and she could not stop it. 

 

She also noticed that her right side did not work too well.
Obviously she wanted to get up. But it failed and so she was laying next to the bed. She knew that this was trouble and all the things she learned at the Red Cross as a rescuer and she began to check out all the signs of a cerebral infarction. Once in front of the mirror, she smiled at herself. I do not have a slanting mouth so that is all that matters. Eventhough she did not manage to talk properly and she seemed to be a bit confused. Just go to work dear, I'm taking good care of myself today. The day passed and when I came back home she was laying on the couch and looked at me with teary eyes.

Only then did she warn me by crying very hard and said she would like to shout and scream like a wild animal. There is such a pain in the back of my head and on this side of my face I feel nothing. When I sat down next to her, she was a little panicky and tried to talk to me what was not going to well. Fortunately, she was consiousness and we found together that it looked very similar to the picture of a stroke. Then the mill was turning. And so we crossed all of a sudden through the doctor's office towards the hospital, no serious brain injury was detected. But what was exactly the cause of this was not really clear but it according to the doctor it seemed to be a part of serious stress.

After half a night at the hospital, we returned home and she told me that she was very afraid of getting a stroke. Still somehow it kept worrying us and we were forwarded by our own doctor to see the neurologist for further and deeper research. Due to the serious anxiety and panic disorder, it was all very complicated to get an MRI scan. But together we can concur the whole world.

Once at home, the misery got started and was for real. I had a full-time job in addition to it I had to take care of my wife and two children, My working hours were quickly reduced from 40 to 36 hours. She could not take care of herself for the hours she was at home. Most of the day she slept and I had to leave her home alone for several hours, I could not live with this. What I also arranged before I went to work, I fixed her medication, prepared a sandwich for her and made sure she did not had to miss anything. Nothing really worked out and she slipped slowly into the abyss.

As a blessing in diguise I had to be unemployed and sit home for a half-year in connection with my temporary contract and enjoy a benefitpay. I have visited many hospitals in this year and psychological helpers our car brought us everywhere. A deadly tiring route for the both of us.

It's amazing she has not even once been taken to a mental hospital and for everyone it is a big surprise because in this total period of 24 months with the help of a psychiatrist and to deal with a complex Post Traumatic Stress Disorder and a pretty intensive treatment for this, she has been advised to spend a day and to search for a daycare to find some balance. Now her days are filled with a morning spend at a care farm and 1x physio gym. She has always been a busy and active person. Her job was call centre agent and she was a specialist in solving complaints. Now she has now been disapproved for work for 80 to 100%. 

 

I did not cancel my job to help her but I work a 32-hour contract with a few good appointments with the planner and together with our eldest daughter we are doing fine. We put ourselves in such a way as caregivers do because the only alternative was a hospitalization / nursing home. We do not have a personal carebudget because this is not indicated, and unfortunately my salary is not big enough for hiring a nurse 8 hours a day for private guidance and for domestic assistance.

She can do quite a lot and even though she has already being picking up a lot of things, it's no longer as it was before, and she can not do as much anymore as in the good old days. Her long-term memory is as good as before, but some moment she no longer knows where she has left her glasses. The sense of time she has lost with some regularity. 

 

She can get into a panic attack at any time if something happens in her area that she has not provided. Her senses such as hearing, brightness, light, smell and taste are severely affected and seriously reinforce more than necassary during the bad periods. I therefore try to protect her all day from too many incentives of this kind. Unfortunately, I can not always be as successful in this regard. Nevertheless, she is accepting her situation slowly

Besides being a partner and her sweetheart, I became mainly her driver, nurse, butler, caregiver, supervisor, spokesman, administrative / agenda administrator etc. etc. Her hobbies are now a little puzzling and working a bit on the tablet.

Together we were always active in the neighborhood and we were happy to help with friends, acquaintances and family. All practical / physical hard work is going to be pretty good. But what we miss the most is walking hand in hand (although this happens sometimes more and more often.), We cannot say spontaneously anymore: "Let's go on a trip for a weekend," an old-fashioned steamy night (even a little bit of cuddling is not always possible No longer we can be unprejudiced intimate). What I miss the most is being the equivalent in a conversation (if that's possible because these kind of things are often too tiring to hold the concentration). I never know how she will respond as it is differently due to the PTSS or because she can dissociate sometimes completely. I often see that when I tell her things, it does not come to her completely. Also, she often can not remember all of it and I havr to tell it again.

And then ther is the worry about the finances. Previously, we both had jobs with related to it a fairly good income. Now we only have her benefitspayment and my 32-hour salary. In addition, we have two school-aged children therefor you will pay enough, which remains after deduction of transport costs, school fees and daycare expenses. We live in a private home which is not really suitable for someone who suffers from conversion disorders, which makes climbing stairs difficult sometimes. We are looking for a nice bungalow so we can sleep on groundlevel, but how do I sell our current property. Fortunately, as what has happened to many other homeowners, the mortgage is not heavily underwater. But a bungalow often costs quite a bit more. I get that residual debt for what we have to take on as extra mortgage we will never be able to pay this all back because I'm not in a position to work more because I want to take care of her and I need to take care of her.

And then the decoration of our house is cheerful but not too crazy because that is not possible anymore. Anyone who comes will agree with us. As this situation now it is not ideal. No, we know that it isn't ideal, yes we realize that. But how would you be doing this...? Nobody has an answer to these questions. I do not want to buy new furniture in the wild, as it shows afterwards that it might take several years to sell the house and move and maybe it might turm out different.

Let me make one thing clear PTSD will hit the whole family.
And one more thing ........... My wife fortunately has no admission indication for a nursing / nursing home. Because then she should live there seperate from us. We do not want that, our children are entitled to have a loving mother and I would like to offer my life for my love. She's only 47 years old and I'm 49. But our life never gets back to how it was. Yep, and all of this has been done to her at her workplace by a couple of sick types who will call themselves Team Leader. And as I feel now, my life will never be really fun anymore and I've had my best days in live already. A PTSD gets the both of you and will hold you hostage. These kind of things are too sad for words.

The Old Sailor,

Nobody said it would be easy, Nobody told it would be this hard.

Dear Bloggers,


Sundayafternoon we visited my Dad who is hospitalized with stomachproblems.
When I entered the room I saw a broken man who became very quickly old and fragile.
Not really the picture that I remembered from the last time that I saw him.
He was sounding depressed as he was telling that his head could not follow all the things that he wanted to do. He had not that long ago a few minor strokes which effected his memory.

I all of sudden realized that he feels trapped in his body as the mind and body are not working on the same frequences anymore. and that I can tell you is a horrible feeling. I had a similair feeling after I fell of the stairs a couple of years ago and my brain was heavily disturbed by the fall. My God I was so frustrated as I knew excactly what I would say but there were no words. I still have problems in places where a lot of people come together and make a lot of noise.

My Dad is not a real complainer but you can easily sense that he had enough. My mind is making overtime and I somehow had the feeling that this might be his last moments, hours,days of his life. He is mising my Mum still every day, eventhough she passed away a couple of years ago. She was the engine of our entire family as friends were always welcome and most of the time she had fresh brewed coffee. It really grabs me by the troath if I think about what might come, do not think that I am down or depressed as it is all a part of the daily life.

I have to call myself lucky as I did not loose a parent on a younger age due to a car accident or what so ever could have happened. This came to my mind as a car crashed in front of me when I drove back from Leeuwarden on line 14, the things that flashed through my head when I saw the fire brigade busy to cut the victim out of his vehicle. I will light a candle for a dear lost one today and I should do this every day.

No one said it would be this hard either. Screaming, shaking, crying. Cascades of water running like rivers down my face. He doesn't care. She doesn't care. Does anyone in this world care anymore? If you care so much for someone, why do they continually hurt you? Is this what life is going to be? Loosing yourself is like a never ending domino effect. Is that how every decision in life is? Every decision effects someone in an entirely different way than you can even imagine? I think that's how it is. If it weren't for that, crazy things would be happening all over the world.

We are a generally self centered people. We say we don't want people to kill themselves (or whatever... make a bad decision, ect.) because we care, which is true, we do care, but we are mostly worried about ourselves. What we would go through if they were gone. What would happen to us, not neccissarily what would happen to them. Why is it this way? Why can't we be focused on the others and not ourselves? I believe there are some people in the world that would care if about the person more than what happened to themselves, but honestly how many are there? Are most of the people in this world just as selfish as me?

What about the people who don't know how to care? How do we teach them? Can they learn to care if they don't care? I honestly don't know if they can. Man there are a lot of questions in my head. If you care for someone who has no need to be cared for or anyone that is done with this life their reaction is not a fun thing to recieve. They push you in every direction away from their heart. You can't even know their true colors anymore. It's a difficult thing. It makes you feel that you want to give up and give in, but you can't. Because you swore to yourself you never would. How can you be there for a person who has no idea what to do with his life? How do you go about showing them that they have a future? I don't understand these things. Are they pointless, or worth it. There are so many thoughts spinning and whirling through my head. I don't know what to do in this case with myself. He doesn't care. She doesn't care. Does anyone care?

Nobody said it would be easy. Nobody told it would be this hard.

The Old Sailor,

It became very quiet in my life

Dear Bloggers,

Due to the autumn holiday, our kids slept over our old babysitters house. I was at home with oly my wife and we decided for a change not to turn on the television. But just sit down at the kitchen table and discuss our future plans. We ended up talking about our old house and made drawings about what was needed to be done, if we could buy the “old” house back. We had very happy times there and we did not have a lot to worry about. Nostalgia was winning terrain and we left behind more realistic options. We could of course buy a bigger and more suitable house. But what would happen if I all of a sudden would call these people and make them an offer that they could buy our house for a few grant more. And these ideas are coming from someone that has no job, no money and no common sense.

It is about time that they come knocking on my door from the “Postcode Loterij” and let us win a reasonable sum of money. We do not need millions but it would be nice that we could realize this funny dream. Here we go again I simply got too much time to think and my brain starts to overreact. Strange enough I am not the only one that is thinking up these kind of crazy ideas. My wife is coming with even bigger plans for the same property. More and more I start thinking about it , and figure out that how stupid we have been to sell this house. Somehow I am doomed tomake these kind of mistakes in my life.

Somehow I think that I was not born for luck at all. As a young lad, I was not the smallest kid, actually you could call me chubby. When I was approximately seven years old, I fell off my pony and hit the stones in the road. My mum took me to the doctor and he told her that my arm was heavily sprained and I should stop whining. After three nights of no sleep as well for my mum and me, we went back to the doctors office. And my mum demanded to get some X-rays made of my arm. The doctor disagreed but my mum was very persistent and got a note for the hospital. At the hospital they gave the answer that the arm has been broken, but it had started to grow back together again. So they had to break it again to get it better located to make it at least a bit straight.

A couple of years later I was in the same hospital again. I was most of the time having trouble with my flu and having a chronic cold all of the winter period, so it was time that my tonsils were removed. A simple operation you will check in in the morning and in the afternoon you could go home again. Well this was not my case, after a few hours I was bleeding pretty badly and I was rushed back to the hospital. I had to stay there for a week to regain my streght as I lost 1½ liters of blood and my body could not cope with large bleedings or wounds.

My adolescent years did not pass without any scratches when I was sixteen years old and driving a moped, I slipped on a rainy evening and hit a lamppost. Consequences: A sprained shoulder and a damaged ego. And of course a lot of damage on my moped. A couple of years later I bought my first car. When you are young, free and single you might end up like me. I was running a bit out of time as I had to work that afternoon. And I started driving reckless but my speedlevel was unfortunate too high for the road curve that I needed to take. And yes I did hit the brakes but the only thing that happened was that I ended up on one side together with my car. Actually I was lucky that only the side of the car was scratched up and the mirror had broken off. I climbed out and pushed the car back on its wheels had a quick look at the damage and carried on with my journey.

After that there followed some periods that I was quite ok, except being lucky in love. I was a lot on the move with my friends, and we did a lot of drinking unless it was your turn to drive. At a certain point I realized this was not the best thing to do in life and I started studying again. During this period I met my wife. All of a sudden I found luck.

But not for long, as we just bought a house, I lost my job (not my own fault) and after a while I found a job on a cruise ship, when I came home again I had to get used to the daily things again.


I applied for a job on a ferry, but the stress was bringing back bad memories from the past. When the firealarm went off I totally lost it. In my army days I got involved with the Herald of Free Enterprise disaster, so I was back home again. Half a year later I sailed again for the same company on a smaller ship on a different route and in a different job. This went on for a few years and I did some jobs in between as the ship was charterd out or sailing on an other ships route, while their ship was in dock.

When we bought this house and just had moved in, I slipped on the stairs just after we had put our oldest daughter to bed. I tumbled down and crashed into the wall. Next thing I remember that I was rushed into the hospital by ambulance. I had been unconscious for a while. I also fractured a thumb and had a brain contusion. After a week I still had trouble walking straight and I fell over to the right all the time. Furthermore I had trouble with mathematics and all my language skills were gone (Dutch, German and English were needed in my job.) I took me a bit more then 1½ year to get my language skill back to a normal level.

In the mean time I had became a lorry driver but I was missing the life at sea. At a certain point I had to stop with my job distribution for the Heineken company as the left side of my body was starting to give trouble. Extreme heavy pains where knocking me out, when I lifted a barrel of beer. Which had never been a problem at all, but now it felt that I had some broken ribs. I was diagnosed with costocohondritis (Tietze syndrome) from that moment I was forced to do an office job.

After a while I was sailing again with my old company as a receptionist. I really enjoyed what I was doing but all of a sudden my full body gave up on me. After a few months in the medical tredmill I got the diagnose Fibromyalgia. The company laid me off and at the hospital they told me that I had to change my lifestyle. Well let me tell you this: I would stop working if I could afford it. (time for the lottery to stop by my door.) I really hope that no one needs to deal with the idiots that I am dealing with now. It is nearly two months now that they should have send me money from the state of Denmark. But these bloody *#%@#+ ?!? can not find my journal back. It is just a bureaucratic nightmare. I think that they should offer me and my family a free holiday to Denmark when this is all running, all inclusive of course.

Make a wish when you see a shooting star, I will take cover as I am affraid that I might get hit.

The Old Sailor,

Already today my body has become my enemy

Dear bloggers,

Yesterday was the day that I had to go to the hospital; hopefully they will come soon with some results as living with pain 24/7 is unbearable.
At least that is what I think.
As all the results of yesterdays examinations brought absolutely nothing.
My day at the hospital started at 09:30 and ended at 17:00 well I was fully in a sarcastic mood when we went home.
Only a lot of frustration was what they could offer me, and for **** sake it is eating me alive.



If they can at least tell me what my future will bring me, and even if it means that I can work only a few days a week.
It will give me something to struggle with.

Well this how my day looks like, when I am home.
I love my family and I know they love me.
A little understanding would go a long way.
It is 6:15 am. I stumble towards the bathroom as hot water is a relief and helps me to get in motion.
Already today my body has become my enemy.
Some days are worse than others, and I have not held myself back enough lately.
I have been enjoying my kid's playing outdoors too much.



The pain bothers me all night long every night, all day every day.
No position is comfortable.
I keep moving and trying to position my body so it won’t hurt so badly.
The alarm goes off, I wasn't asleep but it still surprises me.
When I stand PAIN! My feet hurt so badly, and it just goes on up my body like a tidal wave.
Sometimes it brings tears to my eyes.
I try hard not to let any one see me when it is this bad.
Just my wife but she is most of the time sound asleep.
Some days are worse and this day is worse.
I just keep moving, walking praying my muscles and joints will loosen up enough for me to enjoy the morning with my daughters.



I want to take my muscle relaxer and a paracetamol when they leave.
Words cannot describe what I feel; is it called fibromyalgia or polymyalgia or is it Lyme disease?
What ever name it is given it has had me in its grip since this winter.
Sometimes I don't know what causes it.
It takes me by surprise I may make a soft grunt or moan.



I am feeling horrible and it is coming out as I am grumpy and burst out in anger if they are not listening.
I know it is wrong to yell at the ones that you love.
But god it is difficult sometimes.
You know that no one wants to hear you moan or complaining.
The pain has control, I am exhausted, my whole body hurts, and even my eyes feel dry and gritty.
It feels as if my bones are cutting through my muscles, tendons and skin.
It feels as if I am metamorphosing, my muscles can no longer support my bones and are melting away.



I feel I am turning into something ugly; I don't want to go out unless I absolutely have too.
It hurts and I am so tired of this PAIN second after second, minute after minute, hour after hour, week after week.
I cannot keep up with housework; the rare visitor probably thinks that I am lazy.
I see the looks I get. I am not lazy. I am disabled (ugly word).



I work still a full time job at the receptiondesk of a ferry, raising together with my wife two daughters.
I did all of this at the same time.
I was strong, the busier I was the more I loved it, but all of a sudden I had to take it easy and it was the start of a life full of pain.
I say this to people who don't have Acute Chronic Pain; do not judge me.
I may look normal enough if you don't look close.

But know this you are fortunate.
I am in constant, unending, unrelenting PAIN.
It rules my life, my family’s life.
It seems I only exist at times.
My empathy to all of you who suffer as I do.

It took me a while too write this story, but it is worth it as my life is at certain times pretty frustrating.

The Old Sailor,