Wednesday, 24 September 2014

A wish

Why do we suffer? We are humans, with intelligent brains. We have done so much together, more than any other animal on earth. We should wield pain like any other tool, and yet I cannot. Is there someone who can? How do they do it? Being able to master pain is a great feat.

My methods are not effective enough to alleviate the suffering. I say to myself that it is nothing, that it does not matter. I reassure myself that everything is alright. I keep myself busy doing something all the time while I am awake. But these are just distractions. Sometimes the pain is too much to do anything. I know there is another way. But how?

Those that do, those who are wielders of pain, please teach us. What better gift can there be than to remove someone's suffering? We would feel like the wealthiest humans, as internal wealth is much more important than external.

Monday, 22 September 2014

My story

I would like to share some of my experience. The pain came suddenly as an unwanted companion, a permanent resident in the house that is my head. How does one evict this person? That is what I wish to find out. My pain is ceaselessly there from waking to falling asleep.

I always continued with my education and extra activities. But the chronic pain, combined with the lack of understanding (from doctors and teachers) and bullying at school eventually led to my breakdown.

Pain brings many things. There is a fear of when it will increase and force one to lie in bed groaning, hiding from light and sound. It brings nausea and vomiting. The body feels weak and unstable. When there is no end to pain it brings a deep sadness. What is there to be happy about when considering these circumstances? What hope is there? We are a mere puppet in the hands of the puppeteer.

I always told my parents about the pain and asked, would it always be there. Imagine the feelings of a mother who hears this question from her child. She tries to reassure but inside she has little hope. They took me to different doctors, all of whom tried to portray this picture of how I was the only ever person to come to them with these symptoms, an exception, a unique patient, a world's first... That I was healthy and should continue to live normally. The only pain management offered were ordinary painkillers. We would come back saying that they were not effective, so they were recommended in ever increasing doses. When pain is chronic that means taking the maximum dose, every 6 hours, until death. It was said in an article that taking pain killers even once a week can cause dependence, they will stop working and will only make pain worse. This has been my experience after taking them daily. The doctors knew that I ate very little (maybe once a day or not at all), I took the medicine on an empty stomach. This lead to inflammation of the lining, as pain killers should be taken after meals. Considering that the medicine did not reduce my pain, this side effect made me quite upset with the profession in general.

For a long time my parents believed that I was this unique person until my father decided that, as the doctors weren't solving any of my problems, we should search for answers ourselves through the internet. The multitude of online articles and posts of people having gone through the same thing forever dispelled the illusion that I was alone. Each had been told the same fairytale that "they are the only ones with chronic pain, that it was all in their heads, that they should take painkillers and stop bothering the lovely doctors with their nonsense." Each of us is a hero who tolerated these injustices and survived. There are those who did not. We will never be able to bring them back.

A responsible doctor would admit that they personally do not know of any other effective management and would refer the patient to a specialist. This happened only after many complaints from my parents, an astonishing 10 years after the pain started. I am still confused as to why I was referred to psychologists. They are too confident in their abilities considering that they have not had chronic pain themselves. Their life experience is that they have occasional pain, take painkillers and it stops. They could not believe that it can be different. Even though someone has not been through something themselves, where is the very human gift of empathy? Surely it is possible to at least try to imagine how someone feels. They point out how a person sits, talks and little details of the picture they were asked to draw, but not the most important thing... the pain! I have no desire to sit and talk with someone who tries to convince me that the pain is my fault. The only good thing about it was the joy I felt when our appointments finished. Each time it was like getting out of jail. Pain is awful itself but these people were like an added torment. I genuinely hope that not all psychologists are like this. Please let there be at least one who cares.

It seems to be a consensus  between doctors that only illnesses are bad and pain is a normal occurrence and should be ignored. There were many opportunities missed for me - pain clinics, headache specialists, pain management help groups... If I had been given help immediately my life could have been very different. But I was ignored and left to suffer alone.

Finally I am under the care of a headache specialist. It was amazing how this person knew everything about life in pain before I said it. We have been trying different things but so far I have not had a pain-free moment.

The reduction in pain level is good but I wish to find an answer that does not involve medication or surgery. A treatment that a person does themselves, inside their head. Like a computer can turn any of it's functions on or off, so should we be able to feel pain when we need to, and turn it off completely when we don't. A computer does not suffer, it receives information as a fact. Why are we different?

My conclusion from the story of my life so far is that we, chronic pain sufferers, will have to look for answers together. Control over pain would help all of us, not just chronic pain sufferers. It is in the human interest to find a solution.

Wednesday, 17 September 2014

No bandage - no empathy

Most of the research funding goes into looking for cures for diseases. Chronic pain sufferers seem to have been overlooked. I think it is time that we were heard.

It seems a general trend that when someone has a visible problem they get more attention than when someone suffers but has no 'evidence' except their own word. Even with some doctors. It is like we have to constantly keep proving ourselves. We are seen as healthy if we don't have a 'bandage' (I use this word here meaning something visible that indicates an ailment).

Research funding should be shared evenly, not given on the basis of how loud a person can shout. This method leaves some people out completely. I used to keep quiet but now that I see how things are, I guess I'll have to join in the chorus of people trying to be noticed and treated as human beings. There are specialists doing research and they need more funding.

The number of people with pain is increasing. Our lives are limited by the pain. Obviously if this was a humane society we would get help simply because we are suffering and it is morally right to help us. As society is more capitalist than humane I will have to point out the financial benefits, though it is very sad that I have to do this... All the people in pain, if they had their pain removed, would be very productive for society. We would work and generate tax revenue. So... does that change things for government and society?

Tuesday, 16 September 2014

Society's demands

I have noticed how society doesn't ask any questions. If a person hasn't reached their potential they are dismissed as a loser and discarded. Society isn't interested that the person missed out due to illness or chronic pain. I think that we are very brave people. We might not have done 'enough' for society but we have achieved this - yesterday we suffered but we lived the day to the end, we didn't give up. Today was the same. And, for the foreseeable future, every day will bring more suffering. But every day that we live to the end is another achievement for us. We were not obliged to live this day and we didn't get any support from society, but we did it anyway. Be proud. I am a chronic pain sufferer and I am alive!