A Note for Doctors (judgemental ones)

I have noticed that some doctors are judging me. Probably it was always like that. To hear kind words is uplifting, but it is the nasty comments made by some unkind doctors that stick in my mind. The recent ones have been:

• wears sunglasses, take them off (less light helps reduce migraine pain caused by light)
• does not work therefor must be on benefits (I have never been on benefits. I am supported entirely by my parents. If I had been treated for the pain immediately I would be in university now.)
• sleeps too long/wakes up too late (I am always on time for medical appointments.)
• 'cannot be from Britain because has accent' so must 'tell the truth about origin' (this was really weird to hear. Would like an explanation.

So I have something to say to them.

If you make judgements about me and say unpleasant things there will be consequences. Not for you, you will be ok. I will be the one who will hear echoes of your voice for days, weeks, maybe even years afterwards. It will impact my health. So by saying what you say, you automatically consent to being responsible for causing me to suffer.

Before judging me for how I am coping with my pain (trying to get as much sleep as possible, staying at home, wearing sunglasses…) think about how it is that I am still here. The exit is clearly marked. I could have left long ago. I am still here, still trying to make the best of these defective genes and keep them alive for as long as they will last. I haven’t had any help from doctors to make my life liveable. The things that were treated were things that eventually lead directly to an exit. So I can see that you care about a person remaining alive. But purely existing is not enough. You think of pain as something unpleasant but not life threatening. It is life threatening when it makes a person want to leave willingly, rather than have to bear it. Have you ever thought about what my life is? Be amazed that I am still here. I am in a pit. Please don’t stand there judging. Instead pull me out.

My Progress

I have changed some things since my last post. I have been constantly reminding myself that thought I feel pain, I mustn’t suffer. I can’t help but feel pain – it is in my genes. But I can choose to suffer or not. I choose life. I choose happiness.

I’ve also been doing back and neck exercises, despite the pain, to prevent stiffness which makes the pain worse.

It is good to have something to look forward to. We’ve had some days out and I’ve gone to each one that we planned. Previously I might have stayed at home on some occasions because of the pain.

Mindset does make a big difference. If some people have learnt not to feel pain we can do it too. I have made a start on this journey.

I would like to start a logical debate

I am a thoughtful person and spend a lot of time thinking. I would like to share some of my recent thoughts. Please join in this debate by commenting on this post.

The ingredients of everything

From what I understand everything in the world is made of atoms, which can neither be created nor destroyed. That means that everything in the world is made of the same atoms but they change into different things - like using some bricks to build something, then taking it apart, then using the same bricks to build something else. So what is one day a rock can next day be a plant and so on.

Recycling of the same ingredients

My reasoning calculates that this means that one day there is a person, then the person dies and the atoms become other things. I personally would prefer them to be a person because every person is my sibling (we were all born from those very first people many thousands of years ago). But the universe does not care. It makes no difference to it how the atoms are arranged.

What is our goal?

My reasoning also calculates that there is no "end game" or special prize in life. By this I mean something meaningful to work towards. We just happened to be alive but are still made of those same atoms. So what if we crack the code of life? So what if we become able to create anything we want? Maybe our hormones will make us feel happy, but feelings aside and looking at it logically - what have we gained? I am trying to imagine the life of a robot. It does not have feelings and just completes tasks. What life is this? What is the purpose, really? The robot will gain nothing. If the robot is destroyed then it's existence (to it personally, not to the humans that it helped) will have no meaning. I use the robot as an example of a completely clear headed person who has no emotions and works using logic alone.

Death

I see death as simply being completely unconscious. Seeing nothing, hearing nothing, knowing nothing... If the person still "sees" something (like a light, figures etc.) then clearly for that moment they are still alive, or at least part of the brain is still functioning. Death is when the brain shuts down, not when the heart stops. If I have a night where I don't dream at all there is no space between falling asleep and waking up. I feel as though I just went to bed and suddenly it is morning. I don't feel like any time has passed. Only in those nights where I dream do I feel like I was alive for that space between falling asleep and waking up. So if I had died at that moment on that night with no dreams, I wouldn't even have known. That is probably how any death is. The person suffers but then goes into darkness, and all the suffering ends. As I understand that death is the end, I have no heavenly prospects in mind.

Was it all worthwhile?

So what were all those worries? What was all that suffering? It only existed while I remembered it. Some people will be sad that I left. But I wouldn't even know that I had lived. This is depressing on one hand but liberating on the other. It reinforces my point that pain shouldn't cause suffering. It won't after death, so why should it now? It is all one and the same anyway.

My conclusion

Someone might think that this means that living in the first place was pointless. That is true. But very often in life it happens that 2 opposing opinions are both correct. Using the same logic we could conclude that living is a worthwhile thing. There was a time before life appeared. We (living things) are something completely new and unprecedented. Before us everything was boring. Life should be fun, and fun only. If we know that afterwards there will be nothing we can value this time as something special. I will try to set aside the suffering, as I have been for some time now since starting this blog, and concentrate on squeezing the maximum I can from this life.

Help for Chronic Pain Sufferers 4

I have some bad news. I received a letter from Department of Health (1 month after writing to them). It contradicts what is written on the NHS website. I would like to share some quotes from the letter as it is not confidential and concerns all of us.

"...the Government has no current plans for a further review of the list of medical conditions that confer exemption..."
Really? But on the NHS website I have linked to it clearly says that the government are reviewing the list of conditions. I refer to the very bottom of the page:

So what is the truth? Are the government reviewing the list or not? It is very confusing when one person says one thing and another person says another.

"People on a low income can seek help under the NHS Low Income Scheme, which provides help with health costs on an income-related basis."
I think that there are some misconceptions in government. This is not what these things are about. Pensioners get winter fuel allowances, free eye tests and free bus passes regardless of their income. Millionaire pensioners get these things. They are not income related. The same with certain illnesses. People with those specific illnesses get free medication regardless of income. Millionaires will still get their medication free if they suffer from those illnesses that are listed. This means that the point is to compensate a person who is ill. People who take care of their health but are ill should be compensated for what fate took away from them. We had no part in what happened to us. We did our best. When the problem is genetic, or just appears, the person can do nothing to stop it.

"The Department will continue to look at options for creating a fairer system of prescription charges and exemptions that takes into account the overall NHS finances."
Is that an indirect way of saying that people will have to pay for charges because of the deficit? What happened to ring-fencing the NHS from spending cuts?

A very disappointing reply. Again we are on our own. It is always us being cared for and supported financially by our families. But what about people with no family? We with chronic pain can expect nothing from society.

Click here to view my original post about Medical Exemption Certificates.

Help for Chronic Pain Sufferers 3

I have received a reply from my local MP saying that the matter has been taken up with the Health Minister (the possibility of changing the requirements to qualify for a Medical Exemption Certificate). Hopefully we will see some changes but it is always difficult for minorities, especially disadvantaged minorities, to be heard and considered.

Original post here and my previous follow-up here.

Help for Chronic Pain Sufferers 2

This is a follow on for this post. It seems that the authorities are not currently replying to letters and are, at this stage, collecting information on conditions and evaluating which they will include in the list and which they will not.

If you are not receiving any help at the moment please visit this page (for UK residents only). Scroll down to the bottom of the page to the last question in the list.

Q. Can I apply for a Medical Exemption Certificate if I have another long term medical condition not listed?

A: Only the exempting medical conditions listed on the FP92A are eligible at present. The government is currently reviewing other long term medical conditions.

This was one of the places I wrote to. It is necessary for our condition to be recognized and added to the list. We need as much help as we can get. Unfortunately I do not have any information about help in other countries.

Help for Chronic Pain Sufferers

I have found out recently that people with certain chronic conditions can get free medication. But chronic pain is not listed. It seems strange that one person is fed while another starves. Are we not all equal?

Someone is born healthy. Someone else is born ill. It was not a choice. Surely there should be some compassion for people who, as far as we know with the current medical achievements, will be in pain our whole life. We will need to pay what is quite a large sum, every year until death, to get medicine that we do not take by choice. What is even more unfair is that people with chronic pain are less likely to be able to work to pay for this. So the person who is not likely to be as wealthy anyway, now has to lose even more money to pay for medicine for a condition that we did not choose to have. Other chronic conditions have, rightly, been added to list. It is about time that chronic pain was acknowledged alongside them.

I have written to some government bodies to ask that chronic pain be included in the list of chronic conditions for which people can get a Medical Exemption Certificate. I will keep everyone updated as to how it goes.

For those who take care of us

For those who genuinely care about a person in chronic pain, please listen. Life with chronic pain is hard. If ordinary life is difficult imagine having pain to deal with on top of that. A person always hears from society "go" and "do". This is inevitable. But it is right to expect empathy. The load a person carries on their shoulders should depend on how much they are able to carry.

If a person with chronic pain is not active and spends a lot of time "relaxing" please remember that it only is "relaxing" for a person who is fine. Can someone with chronic pain ever really relax? Are they not always tense expecting the next 'bad one'? I speak from experience. All these things that would normally be like 'having a good time' turn into mere distractions from that in-evictable tenant. But when he wants he will take hold again. Like a rider taming a horse.

But it is not all over. We are fighters, just give us a chance. If you really care, help us do what we wanted but thought we couldn't. We can achieve our potential if we are given support. While we have not mastered our condition, while we are still the horse and the pain is the rider, we will have to adapt to it, and so will society.

Schools are too demanding. They want evidence that a person is not well. Like I said in a previous post, if there is no bandage there is no empathy. I have experienced it myself. Do not force your child to continue a 'normal' life. How many have been lost, gone forever from this world, from being pushed too far. Seek government funded tutors that come to your home or private tutors. If it is too painful to continue education, better skip a few years and see how it goes. Health comes first.

Do not trust the doctors that say it is normal to live in pain. They want us to continue to work for the benefit of society at our own expense. Pain is a signal that something is wrong. If everything has been checked and nothing found, it means it is either not yet discovered or, as in my case, genetic. Continue to search for other doctors. While the link between pain and suffering has not been broken, there simply must be something we can do in the mean time.

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.

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.