Where do blog posts come from?

This post was prepared in advance due to the octreotide trial I was supposed to be having on April 8th. On Monday 7th April I received a phone call to say the trial had been cancelled for Tuesday and been moved to Monday 14th April 2014. I will of course update you with all the gory details if indeed it does take place on 14th April.

I know some people are curious as to where I get the ideas and inspirations for my blog posts. Some are interested in the process I have for blogging.The answer to where I get the blog subject from is quite diverse and sometimes strange! The process of how I get the blog post idea from my head to the page can be equally bizarre.

My blog started out as a way for me to be heard, even if no one read it in the beginning it didn’t matter to me as long as I got my thoughts and feelings down on the page. I felt like all the doctors I came into contact with weren’t listening, my health was bad and I was being labelled with conversion disorder yet no psychiatric help was given.

I knew that I wasn’t manufacturing my condition and they weren’t some vague symptoms being complained about by a stressed out thirty something  woman to gain attention. So initially my blog was about what was going on in my life at the time.

When I first became ill I became convinced that I was dying or was going to die due to the lack of help I was receiving from the medical community. In a way my blog the last statement I could make should the worst happen. It could be used as evidence against all those doctors who had told me that I wasn’t ill and that the problem was all in my head. It was a scary time and some of my earlier blog posts are very angry and desperate.

To begin with I tried to keep my personal life separate from my blog to give myself some anonymity. However I found this created a disconnect between myself and what I was writing. I felt I couldn’t be honest and be the passionate person I am without you the reader getting to see me, the writer of this blog. So slowly I started letting my guard down and letting the readers of my blog get to know me a bit better. You can’t empathise or understand a person unless you know them.

As time went on I realised I wanted the blog to be more than just about my health. I wanted to encompass other subjects that would be of wider interest to people within the world of chronic sickness and not just those suffering with EDS, Pots and dysautonomia.

I have been blogging a lot recently as my health has been so poor that I can not do my normal activities. Sitting  (or in my case lying in bed with the computer on a lap tray) at the computer / tablet and letting off some steam and thinking about writing has helped me get through this difficult period.

So I better answer the question as to where I get the ideas for my blog posts.

Some come from my life as in what new medical struggle I maybe facing at that time, some come from conversations with friends ( my blog post on friends and chronic illness came from a friend and two different peoples stories on two different Facebook groups which were literally posted within hours of each other) , others come from suggestions that my mum makes ( usually she asks me something and as I am explaining it to her I think wow that would make a great post!) Some come from reading other peoples blogs, reading their posts sparks an idea in my head for a subject. Some come from my memories recent or long ago. And weirdest of all some come to me in dreams. It seems currently after an 18 month hiatus my brain is back in blogging mode.

I really need to start carrying a notebook with me wherever I go – which is mainly around the house. The number of times I will be having a conversation with my husband and then suddenly think “oh that would be a great post” and then five minutes later realise I’ve forgotten it is getting frustrating! Usually the really good ideas stick in my head, they get me animated straight away and whenever I can I am thinking about them and trying to think of the right way to approach the subject.

Once I have an idea in my head, I start having a conversation in my head about it. I like discussing the idea with myself and seeing where it takes me. I know this sounds completely crazy but it keeps the subject alive in my head. Then when I feel happy with the subject I start to research it, if its a topic that needs better understanding or some basic fact checking. Sometimes I look at other peoples blogs and see what sort of things they have written about on the subject.  If its something medical I will research information about it and find good items I can provide links for. Sometimes its a subject that doesn’t need any research (like this post) but these are few and far between.

Blogging is so much more than just typing words onto a page. For me its an escape from chronic illness and a way to express myself. Writing has become again to me as important as breathing. Although I only post twice a week – Mondays and then Thursday or Friday, I write most days. Either for future blog posts or editing / refining the ones that are already written.

My blog posts can take hours to write, which is something my husband really doesn’t understand! He doesn’t “do” reading and only saw my blog properly in the last few weeks. I do know that he is incredibly proud of what I am doing, even if he has never read it. I will chat to him about what I am writing about, he never complains that I take time out to write and he is very encouraging, always asking how many views my blog has received that day.

With the first draft of my blog post, I just let the words tumble all over the page, random paragraphs with random thoughts dotted all over the place. I am queen of tangent land – I am forever going off on one! I like to quickly get down whatever is in my head and then have a break from it for a bit.

The second draft I look at what is working and what isn’t and if I have actually addressed the blog post theme or if I’ve gone off on a tangent. If the tangent is good and needs to be included I then work out a way to get it to link to the subject. This is then followed by another break.

Third, fourth, fifth drafts ( and possibly more depending on the subject) is about moving paragraphs around, changing things I am still not happy with and improving the flow of the post. Throughout the whole process I am constantly looking for errors and I never ever manage to spot them all. I hate it when I am really pleased with a post and its been published and then I see an error. Its horrible and happens far more than I would like it to.

The thing I struggle with the most is blog post titles, a lot of the subjects I am dealing with aren’t that “sexy” so it can be difficult to come up with something that will catch peoples eyes when they are doing a Google search. Sometimes a post will have many different titles before I finally settle on one that I like. On occasions though it is whatever I can come up with before my deadline to publish. Some work, others don’t. I am not a professional, I don’t have an editor or anyone helping me write my posts this is a one woman outfit.

Once my new blog post has been published I then have to try and raise awareness about it. I do this through my facebook page www.facebook.com/pages/The-Myasthenia-Kid/205747292968956?ref=hl and my personal twitter account @kidmorris, I am also on google+. All this takes time and effort but a day “pushing” a blog post every few hours really increases the number of views it receives. I can get a bit fixated on the number of visits my blog receives. I have noticed that on the days I publish there is a big spike in views, which is music to my ears as it means my story is getting out there and I may be able to help others who are also struggling to get a diagnosis.

Currently I am trying to work at least one blog post ahead so that if I have a few rough days my blog can carry on without any input from me. This has been particularly important this month with a hospital stay coming up (fingers crossed that the bed is available) on 8th April (this is being written at 6am on the 7th April) and I have no idea what shape I am going to be in afterwards. As stated at the top of this blog post my hospital admission has now been moved to 14th April.

So that’s how my blog posts come about if you were curious! As soon as I am able I will update you with how my octreotide trial went.

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Ocetreotide Trial

On Tuesday 8th April 2014, I am being admitted into the local hospital for a trial of the drug Octreotide. To say I am a little nervous would be an enormous understatement. Anyone who has read this blog for a few years will know that the local hospital and I don’t have a great track record.

From around 2009 – 2011 I had been diagnosed without my knowledge with somatoform / conversion disorder. My tilt table test on 21st January 2011 was going to be my last ever test on the NHS, if it had come back negative I would have been referred to the Mental Health services.

I can’t say 100% if  somatoform / conversion disorder is what I had been diagnosed with. I’ve seen reference to it in one letter – a copy of which was sent to me. I’m guessing that my Dr had found it when he looked through my notes prior to us meeting in 2011. Having brought it up with my GP, it was never expressly acknowledged but it wasn’t denied either. My GP is the sort of doctor that if you said something that was inaccurate he would put you straight, especially when challenging something another doctor had said. So I know some reference was made to my health problems all being in my mind.
http://en.wikipedia.org/wiki/Conversion_disorder  this link explains it better than I ever could.

My care at the hands of the medical professionals that I came into contact with between 2009-2011 changed dramatically. Before I had been treated as any patient would expect to be treated, professionally, courteously and with an interest in how I was doing. After 2009 things changed dramatically, all the staff I came into contact with were cold and would barely speak to me. They gave me the least amount of help they could get away with, even going so far as refusing to treat me when I had low vitamin B12 and the haematologist informed them I needed treatment as I was symptomatic. For sufferers of conversion disorder etc medical professionals believe they have to stop providing “care” as it fuels our need for medical attention. My care since 2011 and getting both my POTS and EDS diagnosis has been back to normal, caring professional and courteous.

I’ve seen my hospital notes from this time and its not a nice read. There are medical observations written in them but there are also personal attacks on my character and on my family which serve no medical purpose at all. I was devastated when I read them and these were the version which they believed wouldn’t damage my mental health.

http://www.nhs.uk/chq/Pages/1309.aspx?CategoryID=68&SubCategoryID=160

In the UK your doctor decides what you can and cant see in your medical notes. The neurologist I had been under since 2007 declined to allow me to see anything he had written about me in the 3 years I was in his care. It makes you wonder what he was hiding and why?

So hospitals now fill me with a great deal of fear. Even when I see my consultant who treats my autonomic dysfunction, I can never completely trust him. I’ve already had a couple of doctors be nice to my face and then write absolute rubbish about me in my notes. When you’ve seen this first hand its very hard to trust people in the medical profession as you are just waiting for it to happen again because previously 99 times out of 100 it happened.

I spend every hospital visit waiting to be told that the doctors have changed their minds, I don’t have autonomic dysfunction and that all the care I have been provided with since 2011 will evaporate. I suffer with terrible anxiety before any trips to my outpatient appointments, it causes sleepless nights and for me to shut down and become uncommunicative, such is the psychological damage the previous doctors have wreaked upon me.

As you can imagine the prospect of two days as an inpatient is causing the old anxieties to surface. If its bad now ( the time of writing this post is Wednesday 2nd April 2014) what the hell am I going to be like by Tuesday (8/04/2014)?

When the hospital letter arrived confirming the dates for my admission the first thing I checked was which ward of the hospital was I being placed on. If it had been the ward I had previously seen so much of, I would have cancelled there and then. There is no way on earth I will ever go back to that ward. Thankfully I am being admitted to a ward I have never heard of. There is a remote possibility that I will come into contact with my previous medical team, I can live with that and that’s what MP3 players are made for!

I don’t know what the drug trial will involve so I can’t really tell you much about it. The drug I will be trying is called Ocetreotide
http://en.wikipedia.org/wiki/Octreotide  and it is injected subcutaneously ( under the skin). I am imagining there will be at least one tilt table test to check if the drug has worked or not ( another thing I’m not looking forward to as my health has been in the toilet since the last one).  I have bought some lucozade to take with me as at the last tilt table test http://en.wikipedia.org/wiki/Tilt_table_test my consultant forgot to bring some. Luckily we had brought some with us knowing how busy my consultant can be! So I will also be coming prepared this time. They like doing the tests with lucozade as this gives the most dramatic results in people with post prandial hypotension.    http://heartdisease.about.com/od/syncopefainting/a/Postprandial-Hypotension.htm

The first day of the trial is to see if I can tolerate Ocetreotide, if I cant the trial will be aborted. The second day, if I have tolerated it and the tilt table test confirms that it has reduced or got rid of my symptoms, will be spent learning how to inject myself. Once they are happy that I can do that I will be allowed to go home and then the fun may begin with getting the local care commissioning group to allow the drug to be prescribed to me as a) the cost and b) its being used off label. So even now I don’t know if I will be coming home with the drug if the trial is successful or if I will have to see if my GP will be allowed to prescribe it. Talk about jumping through hoops!

I’ve included a few links in this post so that you can find information easily should you wish to find out more.

Obviously I will update you in future posts! Of course my admission to hospital depends on whether or not a bed is available so I could be worrying myself sick over nothing!

***quick update Monday 7th April I received a telephone call to say the trial has been moved to the 14th April. **

Frankie!