last post of 2020

 As google blogger is being an utter tit at the moment you can find the last blog post of 2020 over on my wordpress site Themyastheniakid.com

https://wp.me/p4zBAs-G4

Merry Christmas and happy new year!

validation

Blogger has decided to play silly buggers this week and is doing lots of

weird things to my blog.

please go to https://themyastheniakid.com/2020/12/17/validation/

to read this weeks post

Podcasts

 Something very different this week mainly because I am more than a one trick pony and even I get sick of blogging about the disaster zone that is my health from time to time!

For the last few years I have been dipping in and out of listening to Podcasts. I really believe they are a very underused piece of kit for the chronically sick / disabled for the days when you are stuck in bed or nights when you are lying their awake unable to sleep. All you need is a smart phone, tablet or computer and within moments ( depending on your internet speed ) you can be listening to people talking about whatever subject tickles your fancy! 

I installed a podcast app from Google play that cost about £1.00, you can find free ones as well such as BBC Sounds etc. The app I have  is an American based app but I have found that by using the search bar I can pretty much find any podcast that I might like to listen to.

So what is a podcast?

For the uninitiated it is just like a standard talk radio show on whatever subject takes your fancy. There are literally Podcasts to suit every person, sports, drama, Music, comedy, documentaries, crime, history, travel, crafting. You name it someone has probably done a podcast on it. My favourites are the True Crime genre or documentaries. During lock down I got cheesed off with The Archers the long running radio drama on BBC radio 4. I hated the monologues they did and I have to say I haven't probably listened to it since May. In some circles that admission would get me shot at dawn, especially The Archers group I belong to on Facebook. I would be accused of no longer being a fan but a dabbler. I am not alone with changing my listening habits, many in that group have also admitted that they are no longer regularly listening.

For a better explanation of what a Podcast is use this  link

Podcasts I have enjoyed

I really love True Crime podcasts, I don't know why but I find them particularly gripping. They can range from miscarriages of justice and the attempts to have sentences overturned to investigations into cold cases. I guess I like the human aspect of it, the ones i have listened to haven't been sensationalised they have been sensitively handled and really make you think. Episodes can be as short as ten minutes and as long as 70 minutes. So there will be multiple episodes in a season / series.  I like listening to them when I am resting in bed or unable to sleep.

I have particularly Enjoyed the  following podcasts and have included the links to the shows where it says here

Shreds - available from BBC Sounds a miscarriage of justice in the UK here

Death in Ice Valley - available from BBC Sounds, an unidentified body, who is she?here

Pretend - some of that is true crime. It is based on people who claim to be something they aren't. Series 3 was good as it was an in depth investigation into a cult ( cults also interest me). here

Lisk - Long Island Serial Killer here

Cold - Journalist investigates the cold case of missing Susan Powell. This one is particularly disturbing here

In the dark - I am currently listening to season 2 after enjoying season 1.

The Teachers Pet - currently unavailable in Australia due to the risk of interfering with the trial. A very good piece of investigative journalism.  here

The Night Driver - Janine Vaughan disappeared 19 years ago what happened to her - here

Lets Talk about Sects - a look into sects and their charismatic leaders here

How to find Podcasts to listen to

Podcasts are becoming more mainstream, many magazines and newspapers quite regularly feature the "best of " lists for genres of podcasts. Because I know I like true crime podcasts, I just googled top 50 / top 100 true crime podcasts. That way I get a little synopsis of each podcast so I know what it is about and whether or not it will interest me. 

I am not into gore or listening to descriptions of autopsies so by using these collated lists I can whittle down those that maybe of interest. I then jot down using my samsung notes on my mobile (cell) phone the names of all the podcasts I would like to listen to and I have been slowly making my way through the list. I always have my phone with me so having the list on there rather than on a piece of paper that I would lose, means that I can update my list or remove podcasts that I have listened to or get rid of ones that just didn't do it for me.

I find podcasts are also good for high pain days when I have to lie in bed and not do anything. Sometimes I am just not well enough to watch the TV, so having the alternative of a podcast gives me something to "do" whilst not doing very much at all. In fact over the last few weeks I have got so into the podcasts that when season 4 of The Crown was released I waited a whole week before watching it. Which for me is unheard of as normally I would have finished the season within the first three days of it being released.

Sometimes I wish some one would video my face as I am listening to the podcast in bed as on occasion I am stunned at what I am hearing. Particularly with the season two of In the dark The Curtis Flowers story. I know we have miscarriages of justice in the UK and people have accused the justice system of being corrupt. But Bloody hell as a Brit listening to what has been going on with this case, honestly MIND BLOWN at the level of corruption, abuse of power, failure to investigate, fabrication / distortion of the facts. It is horrifying. How can anyone who is without resources in the USA actually get a fair trial? Mind you the same can be said of the UK if you don't have the resources then you don't get the best lawyers / solicitors. 

Shreds is a fantastic example of everything I have just had a go at the American justice system about but it took place in the UK, in Wales. It is a horrific story of a botched police investigation , leading to the incarceration of many innocent men. The head of the police force involved ( at the time) is clearly delusional in the way he continually says the the Police did an excellent job and the right people are in prison for the crime, despite the MOUNTAINS of evidence to the contrary.

I think in another life I might have been an investigative journalist or possibly worked in the legal profession, maybe that is why I enjoy this genre of Podcast so much.

A bit of a head scratcher

Those of you who have been reading my blog right from the start will be well versed in my journey with attempting to get a diagnosis of Myasthenia Gravis, I was diagnosed with it in 2007, that diagnosis was removed in 2009. Since then on a couple of occasions I have had major issues with Ptosis and generalised muscle weakness and ended up being tested all over again. On every occasion it has  come back negative. So you could have knocked me down with a feather ( twice)  today when Myasthenia Gravis was mentioned.

I gave up long ago trying to find answers for why there are days I can't take a deep breath . Why I struggle with repetitive movements and then find myself unable to move the affected limb. Why I am always battling this more in the summer than the winter. It seemed every time I mentioned Myasthenia Gravis I was laughed at by the medical profession and given another BS diagnosis. Now it isn't that I want this condition, I could really do without daily ptosis unilaterally or bilaterally. I could do without the fact that all the time my mind is willing to do stuff but my body frequently lets me down and I am unable to do stuff because my body simply won't move .

The last time I was investigated for it in either 2017-2018, I was told I had idiopathic hemifacial spasms. Which my then PoTS consultant laughed his head off at as it was very clear that the right side of my face wasn't in spasm but was paralysed. In fact evry medic who has seen the photo's has said that isn't a facial spasm, basically the whole right side of my face droops making me look like i have had a stroke. From then on my PoTS wrote in my medical letters that I had a neurological disorder as yet undiagnosed. No more mention of MG. 

I left the diagnosis alone, there was nothing to be gained by continually going on about a diagnosis that all tests repeatedly kept saying I didn't have. It made me look like I was only interested in getting that diagnosis and that I was "making" my symptoms up. I didn't want to be considered a faker / malingerer / sufferer of somatization disorder. So I just shut up about it. Mentioning MG compromised my medical care, so I learned it wasn't a battle worth fighting anymore. Despite the fact that I was always positive on the icepack test, following a doctors finger with my eyes causing nystagmus and a sustained upwards gaze causing ptosis. Because some doctors believed I was faking all those symptoms. To keep going on about it made me look like I was mentally ill. Sometimes you just have to let shit go and trust at some point no matter how long it takes someone believes you.

This morning I had to attend the major hospital near me, for the ongoing issues with my neck. The doctor was chatting to me and said about my medical history so I took him through EDS and the severe autonomic nervous system dysfunction. He then had a look at his screen and said "well what about your Myasthenia Gravis? That is quite serious". If I hadn't been wearing my migralense glasses and a face mask, he might have seen the look of shock on my face. I was for a second temporarily stunned into silence. I said answering honestly and in the least sarcastic way I could, "well the MG thing has been going on for years and the jury is still out on whether or not I have it, I take mestinon to help treat my PoTS and it also takes care of the ptosis and muscle weakness so I just get on with it.". Nothing more was said.

He then went through my prescription medications and I said to him, "oh I also have home oxygen". He asked me why I have that, so I replied " I can desaturate very quickly sometimes or struggle to breathe, now that could be because of the undiagnosed Myasthenia Gravis or it could be the issues with my autonomic nervous system or a combination of both." Again my reply was noted and nothing more said. I have had my oxygen machine for at least 10 years now. No one has ever attempted to remove it even though I have no one overseeing my care with it. 

As part of my physical exam the doctor did some neurological tests. I had to follow his finger with my eyes. Now not deliberately I promise you ( I woke up with a horrific migraine this morning and almost cancelled the hospital appointment ) I forgot to take my mid morning dose of mestinon, so I was feeling shit because my blood pressure was plummeting and sumatriptan was making me feel fatigued.  He made me follow his finger, well I must have looked bizarre as my eyes just couldn't keep up. I got nystagmus and my eyes were rolling around in my head. I knew he was surprised as he did the same movement several times, each time it produced the same result. It surprised me if I am honest.

 I know that nystagmus during the neurological exam can be an indicator of MG. Obviously years ago I did lots of research on the subject to educate myself as I had never heard of MG when I was originally diagnosed with it. But I still wasn't expecting it to happen when I had to follow this doctor's finger. For so long I have ignored the symptoms I have and blamed them on other things or even accused myself of putting them on that when they happen like that it still has the ability to surprise me.

I never said anything at the hospital. Again I have learned it is better to keep your mouth shut and act like a dumb blonde than to look like you have spent hours on the internet researching stuff. It doesn't do you any favours and again "appearing to know more than I should" has been held against me previously so I stopped doing it. There was nothing to gain from having the knowledge if the doctors assumed that you were faking your symptoms to get a diagnosis - which I wasn't let me be clear. If I had any control over my life I would not have been ill health retired in 2008 giving up a career I loved, losing my financial independence, losing my ability to walk on Woodbury common, being socially isolated for long stretches. There was nothing to gain by me becoming sick and just so much to lose.

The second mention of Myasthenia Gravis came this afternoon. I got a summons for Jury service this week, which is a physical impossibility for me. I contacted my doctors surgery expecting them to do me a fit note / medical certificate. Instead they have printed off my Patient Summary Hospital Print out, which lists all my current prescription medications and my medical conditions. On the top line of the section marked Active Major Problems is Myasthenia  Gravis. It has the word probable alongside it but it hasn't been updated since 2011 but that is at least a year after the diagnosis was removed. I also changed gp surgeries in 2011 so I am confused that if it is a clerical error why it has simply been repeated when they would have had that information in front of them saying that diagnosis had been removed in either 2010 or 2009. The diagnosis was poo pooed again in either 2017 or 2018. So why is it on this patient summary and being used by the gp practice and the hospital?

But it would also explain why the doctor at the hospital was talking about this as I am guessing this information would have been attached to my referral. It has me scratching my head. Does it mean they think I have a probable diagnosis of MG? Is it a clerical error? Because if it is there have been multiple opportunities to correct this. So many hospital letters etc all saying it isn't MG. I am sat here just thinking WTF?

I don't want to open up a can of worms by asking what that diagnosis is doing there as I have previously suffered serious breathing problems and was blue lighted to hospital where it was suspected that I was on the verge of or maybe having a myasthenic crisis. To have that removed and then suffer from major breathing difficulties again would be just my luck and the hospital writing it off as a panic attack or anxiety could be dangerous.

It is a bizarre place to be when someone brings up a diagnosis that you long ago thought was off your records. It is strange what is on these records as on the Majory Inactive side are a Diagnostic endoscopic examination of Right Knee joint surgery form 1988 - a life time ago!  Acute Pyelonephritis ( kidney infection) in 1999 ( I actually think that date is wrong as it was 2009 I was in hospital with that).  Laparotomy and division of band adhesion 8th July 1998. Again that one feels like a life time ago and it was an utterly hideous experience and very, very painful.

So I am sat here scratching my head again, do I say something and get a couple of errors corrected when I haven't had access to all my notes and have no idea what information those entries have been based on or do I just leave it ? I just am clueless as to what to do.