Tuesday, September 2, 2014

"What exactly is wrong with you?"

“What exactly is wrong with you?” is a question I’ve heard a lot over the last five months, whether it be from friends, teachers or doctors I always feel like that is a question that no one really wants to know the full answer to. What people really want you to say is that you are fine, thanks for asking now I can go back to not really speaking to you again for the next six months- but in case anyone does have a genuine interest about what really is wrong with me then this blog post should answer some questions. I’m not writing this for pity or sympathy but more to document for myself, maybe in some way writing this down will make all the jumbled up thoughts in my head easier to think about. Another thing before I get down to it, is that this post won’t be focusing on mental health, I’ve already said everything I want to say on that subject and I don’t feel the need to go into gory details to everyone, although undoubtedly some  details will be mentioned as part of my overall explanation.

Frustratingly, I cannot really begin to tackle the question in the title with nearly as much clarity as I would like too, this is somewhat because since taking a break from college my mind has turned into a mushy mess but is mostly due to the fact that I don’t really know yet what is wrong with me. In the past six months I have probably visited my GP surgery at least fifteen  times but have really only been given any help in around two or three of those appointments.  Every time I went to the doctors, full of nerves about what state I was in, panicking about what would happen and hopeful about what help I would finally be offered, I was met with the same detached, disinterested reaction from Doctors who seem so used to seeing people with the common cold that they have turned completely bored and ambivalent to their entire job. Many times I have been met with the statement of “Yes these are very serious symptoms but you are only eighteen so it probably doesn’t mean anything”, this was without any further investigating or offers of medication. Anyone who says the NHS is a breeding ground for an over caring culture and hands out drugs too easily has obviously never actually tried to get medication on the NHS- a system which is ultimately so threatened by its lack of profit that it forgets that it is not a business and should actually be caring for people.  Thus, very little was done by doctors for a long time for me,  I wish I could say that this only had a physical effect but ultimately it has left me discouraged and tempted to give up on myself.

Once my doctor did finally remove their glasses which are fogged up with the smog of their own self-satisfaction and over inflated egos I was finally given at least some kind of help, not a diagnosis exactly but help nonetheless.  Firstly, I am now the taker of 80mg of propanol (a beta blocker) a day, if you aren’t aware of the side effects of beta blockers I will just briefly mention they can cause low blood pressure, cold hands and feet and impotence, needless to say they are a charming creation. To many it may seem illogical that I was given medication before actually being examined at all but this isn’t so much the case. I have visited A&E and my Doctors a number of times for an ECG and had a couple of very simple physical tests carried out that exclude the possibility that I am having a massive heart attack right at this very moment. Also to be referred onto a cardiologist you firstly have to be trialled on beta blockers to see if they ease the problem as they can be used to tackle anxiety, migraines and chest pain and are normally the first port of call for any heart or chest pain. In an ideal world I would prefer to be checked over and not live everyday unable to walk the stairs or a slight hill but I’m aware that there are people out there with very serious issues which should come above my problems, which although uncomfortable aren’t killing me. Essentially, over exercising and under eating (told you I would have to throw in a bit of mental health) are quite likely to affect your physical stamina, so I am yet to see whether the feeling that my chest is going to explode is related to any mental illnesses or is something more serious.

Next on the long list of health issues I seem to have accumulated is a high level of bilirubin in my system, which basically means my liver isn’t working as well as it should be.  Bilirubin is an orange-yellow part of bile. Bile is the bright green fluid secreted by the liver to help digestion.  Bilirubin is mainly formed by the normal breakdown of haemoglobin. Bilirubin normally passes through the liver; it is then excreted as bile through the intestines. When this process is interrupted, excess bilirubin stains other body tissues yellow. Essentially the only noticeable side effect of this is that my eyes and skin tone have taken on a strange yellow tinge, meaning I do look a little bit like a jaundice baby/ somebody with an olive skin tone about to vomit. This is another health issue that is linked to my various eating issues and will probably correct itself over time as my body begins to get healthier and is no longer fearful that it will be put into starvation ever again. This is probably the least painful and troublesome of everything really, in fact until the clinic I visit requested I had another blood test I didn’t realise there was really anything wrong with my liver at all, although this is at least partly due my doctor “forgetting” to mention that test result to me. It does at least explain my extreme fatigue however which is a side effect of having high bilirubin levels. I challenge anybody to be able to sleep more than I do, when I was younger I was an extreme insomniac, often having as little as three hours sleep before doing a full day at school. Now however, I sleep all the time and I mean all the time.  I can easily get a good ten hours sleep at night and wake up in the morning feeling exhausted, needing a nap again before 10 am, later needing another nap by around mid-afternoon and STILL managing to be exhausted again by nine at night. It frustrates me when I am accused of being lazy, or not trying to get on with my life, I would absolutely love to be able to have a part time job or go shopping but at the moment a short walk is enough to wipe me out for a week, so working for more than about ten minutes isn’t going to happen.

Now on to the crème de la crème of my ill health, the condition which has been the cherry on top of a fairly awful year. One day I was sat revising politics on my bed whilst watching Bargain Hunt and I suddenly got the most crippling pain of my entire life shooting through my teeth and jaw. This pain is not comparable to tooth ache, I cannot begin to get across how awful it feels, the easiest way to describe it is to say that it feels like an electric nail gun is shooting nails into my face which are then causing an electric shock throughout my face. When I first got this pain I tried biting on something, pouring water on my teeth- anything to reduce the feeling I was trying to cope with, but nothing could touch it, it is the kind of pain that leaves me exhausted for weeks, unable to contemplate leaving the house and the illness which ultimately prevented me from sitting my A Levels. I cannot possibly leave you with an image of how completely destructive this pain has been in my life, it makes me want to rip apart my jaw, and leaves me screaming and crying on the floor. This pain went away for a few months and has come back with a vengeance in the last few weeks, no painkillers ease it not even my StepFather’s Tramadol which is enough to drug a group of cattle.  It is thought that I may have a condition called trigeminal neuralgia which is known as the “suicide condition” because it so painful that people suffering with it would do anything to escape.  The pain is often described as an excruciating sensation, similar to an electric shock. The attacks can be so severe that you are unable to do anything during them, and the pain can sometimes bring you to your knees. After the main, severe pain has subsided, you may experience a slight ache or burning feeling. There may also be a constant throbbing, aching or burning sensation between attacks.  I have been prescribed a medication which is meant to calm the nerves although this has had little effect. This pain has left me concerned about the prospect of ever living a “normal” life again, it can be triggered by a sensation as light as wind blowing against your cheek. I cannot imagine how I would cope if I had an attack in public, or in an exam, it is something which is still fairly unsolved.

So, there we have it, if that hasn’t left you feeling depressed I don’t know what will, although I really don’t mean this post to be negative, I just want some closure on a very confusing time in my life. Although being ill for a long time has had a negative effect upon a lot of my life it has also had a positive effect upon my outlook on life. Before I had these issues I would cry if I got a B in an exam, I remember thinking my world would end when I got a B in my first AS Level exam in History. Now at least I know that the world doesn’t really hinge upon grade boundaries, or who kisses who. Obviously these things are important but the most important thing in life is that you are healthy enough to enjoy it. Being “perfect” academically or aesthetically shouldn’t be more important to you than being alive.

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