Bl**dy Alexa

** Apologies to anyone named Alexa, this isn't aimed at you**

 Now don't get me wrong I love my Echo Dots, I have them pretty much in every room in the house, mainly so I can blast out music usually Taylor Swift as I am still girl crushing on her ( it will be a year come December that I started this relationship 😂😂😂). Since HRT was commenced back in August music has become a very important part of my life. Thank god Mr Myasthenia also has a penchant for Talyor Swift. He would necessarily put her music on himself but he has heard it pretty much every day for months and now knows several tracks off by heart and will happily sing along! Now he is totally busted 😂😂😂

As is usual for me I have gone off on a tangent, I mean what on earth does the above paragraph have to do with Bloody Alexa? Well me and Alexa ( Googles AI assistant ) have a love hate relationship. I have lost count how many times I have called her a c*** for not understanding what I have just said. I understand that she struggles if the TV is loud and she is figuring out which voice is giving her an instruction or if there is a loud background noise like a microwave or washing machine on spin. It isn't at those times I lose my sh*t with her. It is times like today when in the kitchen and there is no background noise and I say "Alexa put coffee pods on the shopping list". She acknowledges and puts them on the list. Then seconds later comes out with she doesn't recognise my voice and that she needs to know who I am.

I tell you it feels like a massive slap in the face when she says that. I am the one that bought the Echo Dots, set them up and taught her Luddite husband how to use them and yet she claims not to recognise my voice. I get it I totally do because my voice does change every day and throughout the day. This is the one thing that PoTS and possibly EDS can't explain and it is more likely my Myasthenia Gravis symptoms or whatever neurological condition is going on effecting my ability to speak.

Some days I find it almost impossible to speak, the only way I can describe it is that my tongue stops working forming the words or when it does attempt to form the words it moves very slowly so it is lagging behind. It is a very bizarre symptom and one I have had every since my illness reared it's ugly head in 2007. I know EDS is genetic but until 2007 I could manage it along with the PoTS and low blood pressure. Other days it can be an issue just getting enough volume for Alexa to be able to identify that someone is speaking to her. It is very frustrating that really besides my husband it is only Alexa that acknowledges my speech issues. I can't predict when I will have speech issues, as they are intermittent and going to the gp when everything is working normally is a waste of time. I really need to record myself when I am having issues or when Alexa has decided not to recognise my voice / understand my instructions.

Now I am not saying that once in a blue moon Alexa doesn't recognise my voice, it happens at least once a week and on a bad week it will be multiple times. She struggles daily interpreting my instructions. On occasion I will have got stuck asking her to do something, the word is in my brain but is refusing to make it to my mouth. I find Alexa is very quick to switch herself back off when you take longer than a normal person to ask a question or issue an instruction. It seem's a bit ablelist to me to expect everyone to be able to speak to Alexa within a set XX amount of seconds time frame. Not all of us have an easy time talking. I know towards the end of the day I can start to slur my words as I am just too tired to form the words properly. When Alexa doesn't get what I am saying on a bad day it rams it home how bad my speech issues can be.

Most of the time Alexa's inability to recognise my voice is laughed off, especially when it is followed by a stream of expletives from me. I know people with Scottish accents find they also have issues when trying to interact with AI. I have a west country twang but nothing that would make it impossible for Alexa to understand me - I believe. AI really does need to be improved so that it doesn't stop people with accents, speech impediments or disabilities from being able to use it. 

The way that technology has evolved in my lifetime is amazing. I love using my Echo Dots. I set daily reminders for me to take medication, ask for weather reports, set timers and obviously play music on it. We also use it to record a shopping list as we find that we are getting low on a particular item. Friends have recorded voice messages and then sent them to us. That is particularly good fun! I also use the announcements in the Alexa app to get my husbands attention if he hasn't heard me shouting from upstairs. I have freaked him out several times by dropping in on the Echo Dot that is in a particular room and speaking to him directly through it. So it has helped me enormously with many different things that I struggle with. It has been a really positive experience on the whole, it is just the issues with my voice that have detracted from the experience. I still wouldn't be without them though. Even if most days I utter "Bloody Alexa"

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.

Update on End of my Tether

Last week I wrote about the horrific migraine I had and as I stated when I wrote it just because the acute phase is over it doesn't mean that you are 100% back to normal. I spent the following 7 days with a headache varying in severity. It took until Monday ( 25th May ) for me to finally be free from a headache and any other lingering post migraine symptoms.

I did manage to write a letter to my gp surgery on the Wednesday as I said I would in my blog post and that bore fruit. I have now been prescribed sumatriptan . The gp contacted me via a text message which was weird as I have never had that happen before and contained within the message was a link toThe Exeter Headache Clinic protocol . I have included the link just in case anyone is interested as I found it very comprehensive and have taken onboard all the suggestions contained within it.

I printed out the the protocol as I am useless reading off screens ( unless it is blog posts but they have to be broken up with frequent paragraphs, long posts with no breaks are an instant turn off for me as I just feel overwhelmed). I then made a list for my husband to get the OTC ( over the counter ) medications from the pharmacy at his place of work. I also asked him as I have a history of projectile vomiting soluble aspirin / paracetamol etc to ask the pharmacist about paracetamol suppositories. I did explain in my very long letter to my gp that projectile vomiting is a HUGE problem along with nausea when I get a migraine but that seems to have been glossed over. He was quoted the price of £62.50 for not very many. I'm afraid I simply don't have £62.50 for medications, especially when I was already having to cover the cost of the suggested medications soluble paracetamol, aspirin and buccastem, with the supplements that I was also being asked to try to see if these also helped or reduced the amount of migraines I have been having. I have had to buy Magnesium ( taken very carefully to begin with due to the possibility of undiagnosed Myasthenia Gravis ), Co enzyme Q10 and Riboflavin ( Vitamin B2). I have to take these without fail for the next 8 weeks to see if they make any difference to the severity of my migraines or frequency. All in all I have had to spend over £50 on supplements and medications - thankfully my sumatriptan didn't cost me anything as I get free prescriptions, had I have had to pay for it you could basically add on another £10 making it as near as dam it 60 quid in total. 

That really pissed me off....in a time when many people have either been made redundant / furloughed on 80% pay or are on Universal Credit for the first time in their lives due to Covid-19, my gp's surgery was so out of touch that they didn't bother contacting me to ask if I needed them to write me a prescription for the OTC medication so that I didn't have to bear the cost. Thankfully neither my husband or my income has been hit due to the current global pandemic but we know that we are in the minority not the majority. It really grinds my gears that many other people who have been told to follow this protocol simply wouldn't have been able to afford it or would have had to choose between food or medical treatment and surely that is very, very wrong in the 6th or 7th richest country in the world? I know had I been in a position where I couldn't afford to buy the OTC medication ( let alone the supplements) I would have been far too embarrassed to admit this to my doctor or anyone. Poverty seems to be a thing that is really looked down on in the UK and many simply feel that those in poverty are somehow at fault for it when everyone ( except the very wealthy ) are one illness or accident away from finding their lives changed forever. 

The practical side of me kicked in, I know what a state I am in when a migraine happens. I am incredibly unlucky that my migraines 99.9999% of the time happen at night and I wake up with them either just starting or already raging. When I first started getting migraines at around the age of 8 years old, I used to get the classic aura, zig zag lines either black and white or primary colours or it could be that I would get tunnel vision or parts of my vision would disappear, usual in the central field of vision. It has been a few years since I have had that kind of migraine. For at least the last 4 years they have come on at night and when they do I am pretty much incapacitated immediately. So I decided that I would make myself a migraine grab bag. This bag or large zipped pouch really, would contain the soluble paracetamol, aspirin, sumatriptan and buccastem along with a bottle of water and a plastic pint glass. Just so I could "grab" that bag and know that I had everything in one place and not have to worry about trying to navigate stairs / call Mr Myasthenia Kid for help. Time is of the essence for me once an attack is underway as nausea sets in very quickly so there is a very short time frame for me to administer medications before it gets to the point where anything taken orally will be projectile vomited. 

The bag doesn't look very big in the photo but it is at least 14 inches wide and 12 inches tall. I used this fabric as a) I absolutely love it and b) it is a totally different fabric style to the other zipped pouches I have in my room. Plus if I say to Mr Myasthenia Kid "the one with hippo's on" he won't need his glasses to identify it! It still has plenty of room inside it even though it has a bottle of water , a couple of plastic pint glasses and the medications within it.

I am still terrified at the prospect of the next migraine but I feel like at least I am putting things in place to help / get me through. I am now keeping a food diary to see if there are any obvious triggers ( when I was a kid there was coca cola, Halls menthol cough sweets, Scampi Fries and orange juice although none of these seem to have the triggering effect now - although I still can't stand anything menthol). I have also bought myself a Migraine tracker book, which details when the migraine starts, finishes, symptoms possible trackers, things that helped etc. Which I thought would be a good thing to keep if the sumatriptan doesn't help and I end up having to see a Migraine specialist. I couldn't resist this one when I saw it

I am feeling prepared, still frightened but prepared. We shall just have to see what happens....

Covid 19 / Corona Virus

I hate to be one of those people who look like they are jumping on the bandwagon but even I am finding it hard not to get a little anxious about the huge fucking elephant in the room which is the Corona Virus or Covid 19 to give it, it's official term.
https://www.nhs.uk/conditions/coronavirus-covid-19/

People I talk to about it automatically assume that as I go out very little I am effectively self isolating / quarantining myself. What they forget is that Mr Myasthenia Kid works in retail, after healthcare probably one of the worst occupations to be in for exposure to this virus. Why? well because of customers firstly, many of these superstores have customer bases in the tens of thousands not just the 100 people that you may notice whilst you are in store shopping. Then there are the staff, who will drag themselves into work rather than face the indignity of the attendance policy and have a black mark against their names. So we have the 7th circle of hell right there. So whatever Mr Myasthenia Kid is exposed to rest assured he will unwittingly then be sharing with me. And that really concerns me.

Technically I am not in a high risk group, although I have PoTs it isn't an issue with my heart. It is a problem with the autonomic nervous system, whilst when I get an infection it makes the PoTs symptoms a million times worse ( causing more palpitations, shortness of breath and syncope / fainting) it won't kill me, unless I happen to faint in a dangerous situation. EDS also doesn't mean I am at any higher risk, my only issue is that whilst I am used to joint pain etc - it still hurts, I can't lie around in bed for days without causing myself more pain due to my back. So whilst I may feel like I need to be in bed I will have to get up and sit / lie on the sofa to ease my back. What worries me and is the name of my blog is the possibly seronegative / undiagnosed Myasthenia Gravis that I have been dealing with since 2007.

Myasthenia Gravis can cause a respiratory crisis which means the patients muscles become paralysed and they can no longer move their rib cage or diaphragm and therefore can't breathe. I have been blue lighted to hospital back in 2008 with such an issue and was very close indeed to being placed on a ventilator so that they could take my breathing over for me. I was taken immediately to resus and placed on oxygen at 15 litres a minute. After a few hours I was doing a lot better but I was exhausted and slept close to 48 hours solid after that little adventure. I still have home Oxygen now a cylinder and a concentrator as I have the super power of suddenly being unable to breathe properly. I also use the oxygen in the treatment of my migraines, when I am not in such a bad way that I can't remember I have it. So this is my fear, whilst technically I don't have a diagnosis of Myasthenia ( when I started the blog I did it was removed in 2009/10 ) I respond well to the treatment of Pyridostigmine Bromide also known as Mestinon which resolves my ptosis and weak muscles within 30 minutes of taking it. Maybe it isn't MG but some other neuromuscular issue whatever it is this is what is scaring me about Covid-19.

My other fear is should I be unlucky enough to end up seriously ill with the virus, a doctor with no idea about my life or the quality of it could ( due to limited resources ) be making decisions about whether or not my life is worth saving. They may not realise that I have lots of friends, a loving husband, a gorgeous doggy, a very happy fulfilled life with my sewing / embroidery / quilting. That I help run the largest PoTs Support Group on Facebook for the UK and ROI ( nearly 5k members) all they will see lying in front of them is a disabled woman who hasn't worked for 12 years and is my life worth less due to their views on disability? I have actually found those in the medical profession can be the ones with the worst attitude towards the disabled and do see things as black and white as who is economically worth saving. The medical profession like all walks of life hold a variety of views on the disabled some nice and some totally abhorrent. I should imagine their are many other disabled people out there worrying about whether their lives will be deemed worthy enough to save should difficult decisions have to be made because resources within the NHS ( ICU beds, HDU beds and ECMO machines).

In some ways this all feels like we are sat here waiting for the zombie Apocalypse to start. There have been many complaints that the NHS 111 website is potentially missing many thousands of possible Covid-19 sufferers due to the questions it is asking. Basically unless you have been to an area that is now rife with it or have been in contact with a person with a diagnosis of Covid-19 you aren't being tested. The main issue now is that many people who have this illness very mildly are  now amongst us spreading the virus and there will be those who are super spreaders who show no symptoms themselves but pass it on to everyone around them, latter-day Typhoid Marys if you will. There are so many known unknowns with this new illness that no one is quite sure how badly countries will be affected.

The fact that just this morning ( Wednesday 11th March ) The Bank of England has cut interest rates and they believe that the UK will now be entering a recession just adds to my concern that this is going to be a very scary time. When have you ever heard of the Bank of England cutting interest rates due to a virus?

I know many people who read my blog will have their own health anxieties and I really don't want to add to them. But I do believe it would be ridiculous not to talk about this. I can't be the only one that is worrying and I want to let you know it is ok to be concerned and to practice extra hand-washing. Whats not ok is to let your fears take over your life and stop you enjoying life.

So just some practical tips - not encouraging bulk buying in any way

- Ensure that you have all your regular medications and keep on top of your repeat requests. Just so you don't run out.

- If you were to have to self isolate do you have family members or a friend who can get shopping for you? reach out on local community pages and find out if there is anyone willing to lend a hand should you find yourself in this position and you have no close friends or family nearby.

- Ensure you don't allow yourself to run out of the basics. Keep a note pad in your kitchen and when you see something is running low write it down. Then next time you go to the shops or have some one go / order online you won't forget. Again I am not encouraging bulk buying but ensuring you have enough to last a few days so that you aren't in a situation with nothing at all.

- Wash sheets and towels on a 60 degreeC setting to ensure you kill as many germs as possible. Try and stay on top of these tasks so that at least you have clean towels and bedding should you get sick.

- If you don't have it set up get internet banking or a mobile banking app set up. So you can pay bills, buy online etc So if you are sick you don't have to worry about getting to a bank etc 

- Have pets? ensure you have their food in. We did a bulk cooking session for Dembe on Sunday and have frozen it. So if we are sick he will still have food. If you have a dog and they need walked speak to friends and family and see if they will help out should you need it.

- Ask anyone that visits to not come if they are feeling under the weather. If they are bringing stuff to you get them to leave it on the doorstep. I would rather upset someone by saying I would rather they didn't spread their germs than have them coughing and sneezing all over me.

- If you have prepayment metres and can afford it ensure these are loaded up. If you can't speak to your supplier and see if they can help at all should you become ill and not be able to top these up. Many people are going to be in the same boat, so I should imagine they will be getting plans in place to ensure customers are supported. The press will have a field day if people are being left without power.

If you can think of any other hints and tips please leave them in the comments.

Stay safe and stay well.

A hard week health-wise

The last week has been really hard health wise. I haven't been the sickest I have ever been but I have certainly been sicker than I have for a while. There is no "reason" that I can identify for this other than perhaps the decline in my health that I have been waiting for since we lost Mollie and Frankie. Stress, emotional upset and change can all upset my chronic health conditions and it seems everything wanted to bubble to the surface last week. I did just power on through which now I am wondering if that was the right thing because I am having more and more MG like symptoms this week - shortness of breath, limb weakness etc sorry I should have said my idiopathic hemifacial spasm the latest bullshit diagnosis for my Ptosis, totally ignoring all the other issues.

If I am honest there is only one symptom that has me terrified and that is when I will suddenly and for no reason lose the ability to take a deep breath. No matter how hard I try to suck the air in my chest fails to move. I end up taking a series of short breaths to minimise the panic that rises in me. I have an elephant sat on my chest who is refusing to budge and I know that if I went to hospital my breathing would be ignored and I would be labelled with a mental health condition rather than the fact that there is something going on at the neuromuscular junction which has been proved time and time again with the ice-pack test. Apparently for the latest neurologist I have seen for these symptoms back in 2017 I believe, it is just a placebo effect. Words fail me.

Sunday freaked me out a bit as well. I wasn't feeling great when I got up and knew there were a couple of jobs that I had to do, then I could sit around and rest for the remainder of the day. Once those jobs were completed I noticed my legs had become exceptionally heavy, like there were lead weights attached. I could walk but it was very slow and shuffling because lifting my feet was taking a supreme effort. I attempted to climb the stairs but that was impossible. I may as well have been sat at base camp for Mount Everest without oxygen, as those stairs were impossible. After attempting three I came back down on my bum and then wondered how the hell I was going to stand up again. Thank god for Mr Myasthenia Kid being home and with it happening on a Sunday. He could help me to my feet and get me to the sofa, plus organise my medication. 

You see I get to take Mestinon / Pyridostigmine Bromide for my PoTs symptoms. I usually dose as follows 7am 60mg, 11am 30mg, 3pm 30mg or 60mg depending on how I am feeling and then 30mg at 7pm. I have to be careful with Mestinon by body is extremely sensitive to it. Too much and I can be twitching all over but mainly my face and it can trigger terrible stomach cramps. It takes a lot for me to take another 60mg during the day but at both 11am and 3pm I ended up taking the full dose because without it my legs wouldn't work. My legs not working is not a PoTs symptom, it isn't an EDS symptom either. There is no medical explanation for this symptom, other than the fact the medical profession believe its all in my head. Which is why when my breathing gets difficult I panic. This medical condition that appears so much like MG / Neuromuscular junction disease will be ignored and it could end up killing me. I am lucky, my symptoms are mild but I have bouts like this especially when the weather gets warmer where my body fails to cope. I worry one day I will be so ill that the doctors refusal to think outside the box will mean that I will be killed by medical negligence and that is a fucking scary thought.

I mean if there is nothing wrong with my breathing......why have I had home oxygen since 2009? In the current economic climate of ongoing austerity since 2010 why if I don't need support for breathing on occasion why has this precious money wasting resource not been taken from me? Home Oxygen can't be cheap,  I have an oxygen concentrator a machine that pulls oxygen from the air and then feeds it down a nasal cannula at a purer form. In case of power cuts I also have to have a huge oxygen canister in the house, I have to notify the local fire-brigade and I am classed as a vulnerable service user by the people who maintain the power grid. The canister also impacts my home insurance cost. If I didn't need it I would get rid of it, not only are the canister and oxygen concentrator ugly they are taking up valuable space in my small home. So in an age of cuts to all services who is covering their arse by allowing me to keep my home oxygen? 

Home Oxygen won't save me if I end up in a full blown Myasthenic crisis. This is where the muscles around the lungs and the diaphragm become paralysed and can't move so you can't get the air in as when you attempt to breath nothing happens. In this situation you need to be in hospital on C-pap or Bi-pap or in the worst case scenario put into an induced coma whilst they ventilate you - sticking a tube down your throat and breathing for you ( intubation ).  Today as I am writing this the elephant has returned, breathing is hard. I took my mestinon at 7.30am already my right eye is starting to droop, its seems I may have to take my next dose earlier.

The Myasthenic like symptoms are the worst thing I currently deal with and I am lucky they are mild the rest of the time. Last week was like a smorgasbord of every medical condition I have. My PoTs symptoms were crazy - heat induced despite me upping the salt tablets ( to 8 a day ) there  were multiple episodes of pre sycope ( near fainting). I had vertigo luckily I caught that attack very early so I only had to endure the room spinning for an hour but it leaves me tired and feeling out of sorts. I had a migraine on Friday one of the worst I have had in months. It was actually the first migraine I have had since January 14th ( my last one was the Monday after Dembe came home with us). My Tinnitus has been so loud it has been difficult to hear the TV and radio. I have felt constantly exhausted .

Then there was the joint pain and my right shoulder continually fighting to escape it's socket. To be honest I have only scratched the surface of what I have dealt with over the last 7 days. I really don't like to say much most of the time because I don't want to be accused of moaning but if I stay silent about it people think that you aren't as sick as you claim you are. You just can't win, you're an attention seeker if you say something and a liar when you don't. It drives me nuts. I stay silent because to be honest it is easier that way. I don't want Jay aka Mr Myasthenia Kid worrying about me when he is at work, I don't want lots of platitudes on social media. It isn't because I think they are false it makes me feel like I am drawing attention to myself and trying to play the sympathy card and that's just not me. 

It's been really hard this week being a puppy mum, I love Dembe dearly, I wouldn't be without him but it is hard work trying to keep him occupied whilst using as little energy as possible. On the whole he is brilliantly behaved but like it is with kids there are days when he can be a little bugger and whilst amusing, it can be frustrating, especially when you aren't feeling well. He is just a puppy though at a little over 6 months old and over time he will calm down. I guess I was so used to Mollie, Frankie and Willow being older and more sedate this has come as a real shock. Jay does loads, he gets up and does his breakfast, he does all the walking and he comes home everyday for lunch to give me a little break and check I am ok. I take my hat off to those of you who are chronically sick and have children, I don't know how you do it.

It has been a hard week health-wise, I just hope things start to settled down very soon.

Medical arse covering

I know that this blog is called the Myasthenia Kid and yet of late I barely mention any Myasthenia like symptoms. Let me assure you I suffer almost every day with MG like symptoms. I think after my treatment at the hands of Doctors in 2009 and 2010, I just shut down. Those doctors who were the supposed experts did such psychological damage to me that I struggle even now ten years later to vocalise when the MG symptoms strike.

Currently the ptosis I suffer with ( daily to varying degrees) has been diagnosed as idiopathic hemifacial spasms ( and they ignore the fact that mestinon cures these "spasms" in around 20-30 minutes). The treatment suggested back in 2017 was Botox injections, funnily enough though no one has stepped up to do these injections, could that be because 1. I don't have spasms my face is paralysed and 2. Botox and MG are contraindicated?

Its like the home oxygen supply I have,  apparently I don't have any issues with my breathing well other than the suggested breath holding by the twat of a pulmanologist I saw ten years ago..... yet I have an oxygen cylinder and an oxygen concentrator. Do you see the running thread here at all? One might suggest there was a hell of a lot of ass covering going on here.

I have breathing problems on quite a regular basis. A lot of the time the shortness of breath can be alleviated with a booster dose of mestinon... you know the tablet that doesn't work. On my very bad days I will use my oxygen concentrator. Tonight maybe one of those nights. I know why this is happening it is because I have been pushing myself so hard physically the last few days trying to get jobs completed. Its the first time in around a year that I have done this much and as usual I have totally ignored the fact it will knock me on my ass.

Due to me having PoTs I take mestinon ( also known as pyridostigmine bromide). It raises standing blood pressure, I can't say that I have noticed any effect on my blood pressure but it really helps with the Ptosis and muscle strength which I lose as the day goes on. But obviously the muscle strength thing is all in my head and the ptosis resolving is the placebo effect. I just think it is another case of arse covering.

Some days when things are really bad the mestinon does nothing. It doesn't help the breathing or the ptosis. Those days I stay in bed and pray that I don't need the hospital. Years ago I told Jay no more trips to hospital unless I was unconscious or I asked specifically asked. I don't do hospitals anymore because I always get treated like I am a time waster who "thinks" I have Myasthenia Gravis. 

Even though I have multiple conditions now diagnosed, some doctors still ignore all that - even with the positive test results and jump straight onto the fact that I was diagnosed by a neurologist with somatiform disorder - notice I say a neurologist. Which is a bit like asking a cardiologist to do spinal surgery.  They also like to bring up my mini breakdown in 1999 - yes 20 years ago and use that as a reason why I am unwell. Despite the fact I went many years without any depression due to the hard work I put in through two years of counselling and CBT.

Yes at the moment I am suffering with depression and anxiety which I would consider perfectly normal considering the losses I have dealt with in the last two years. I have lost 4 friends, my grandmother and my three dogs. Obviously Frankie and Mollie passing within 7 days of each other really knocked me back. I ended up speaking to a doctor last week - more on that in a second, and had my antidepressant dose raised and was given some diazepam for when I can't get out of the panic cycle. Thankfully since the antidepressants have been increased and I have the diazepam I have been feeling quite a bit better. It's just as well as I have to be honest I really wasn't coping, I was doing a great job of masking it and some people can't get their heads around high functioning depression. Believe me I can keep going even when I feel dead inside. It takes a lot for me to finally crumble. And last week it finally happened.

Anyway a slight diversion just for a laugh, I am on the phone breaking my heart to this doctor, saying about the panic attacks, the anxiety, the grief and the depression. I kid you not I was asked if I had considered taking Kalms (  see what they are here ) and then the piece de resistance had I tried rescue remedy (here ) if I hadn't been breaking my heart I would have launched at her. What the hell was she doing ??? look at the medications I am on does she not think that I am way past some fucking Kalms and 3 drops of rescue remedy? I couldn't get off the phone quick enough, despite that she still managed to bang on about using meditation. 

I pointed out it doesn't work for me and leaves me feeling worse. I do a guided meditation when I can't sleep and my mind goes nuts with useless information flying through it. It makes me seriously worry that if someone was suicidal this berk would have offered them St Johns Wort and wondered why they hung themselves. Obviously the last sentence isn't funny its a genuine concern, when depression isn't taken seriously and the problem here was a locum gp who wasn't aware of my magnificent mental health history, they may try to fob someone off with mindfulness. Mindfulness is fine when people feel a bit down or stressed but it won't treat someone who is very / severely depressed. Same as rescue remedy will not treat Generalised anxiety disorder or OCD. It is only because I can and do speak up for myself that I got what I needed, increased meds and some extra meds. I knew I just needed a bit of breathing space to put myself back together. Had I not forced the issue, well I don't want to think about it really because I was teetering on the edge of becoming seriously unwell.

Anyway I digress, don't I always. The way I have been treated by the medical profession especially any time that Myasthenia Gravis is raised has left me with a fear of doctors and a phobia of hospitals. I have spoken to so many other people with chronic illnesses who say the same. We stop going to the doctor because we know we will be fobbed off. 

Take the doctor in July who told me the pain in my neck and the numbness in my arm was stress. In December I went back, because I was now losing my grip and the numbness was worse and I am told I have an impinged nerve, I need physio but the doctor believes I will probably need surgery to decompress the nerve. Thankfully I have avoided that by paying to see my private Physio. Someone who works with me and lets me know that she understands I know my limitations and she can't push me.

So no the MG symptoms haven't disappeared I doubt they ever will. They will just be a host of additional symptoms that no one is prepared to say without a positive SFEMG or blood test what it is and lots of medical arse covering will take place.

Me on Monday afternoon. Does this look like a spasm to you or paralysis? As you can see both eyes are trying to close. My right pupil has drifted to the side of my eye socket. The left eye is desperately trying to stay open by pulling the eyebrow up but as you can see the eyelid is trying to close. The fuckwittery I have to deal with is outstanding!

My First Quilt

It’s just going to be a little blog post this week as all of a sudden I have started to

struggle with the heat. It is again ( as it was like this in the same week last year)

much hotter than it would normally be in the UK for the time of year. The last few

days I have been struggling with muscle weakness. One day I found myself

unable to chew - must be my idiopathic hemifacial spasm playing up….

***sarcasm*** because it went with an additional dose of mestinon. Obviously

the placebo effect ….**sarcasm**

Around the middle of May I posted about my trip to the dentist and the fabric shop,

where I chose the fabric I was going to use for my first ever proper quilt. Not a quilt

as you go where the blocks are all laid out for you but an actual proper quilt.

I had seen a quilt design I liked called “Floating Triangles” in a magazine called

Simply Sewing designed by Janet Goddard. I loved the minimalist look of it and

thought I’d love to make something like that.

So that was it, on a whim the fabric was bought and then it sat on my

shelf in the kitchen until June 2nd, when I decided to start cutting it out.

A few days later I started to make the half square triangles (48 in total).

I must be strange as I enjoy all aspects of sewing, it's the cutting out I find

hard but that’s been made a lot easier with my new creative grids stripology

rulers. However for all the squares I had to cut out I couldn’t use my new

rulers as they needed to measure 4 ⅞ inches. Typical! So I ended up making

a cardboard template. I am useless at drawing straight lines, I really need to

buy myself a set square to help in situations like this. I have already invested

in a compass for the centre of my Dresden Plate designs!

The following day I started adding the strips to my half square triangles.

Unfortunately I was a little over eager on my trimming of my half square

triangles and found that I had to remake a load of half square triangles

as they were so much smaller than the others and it would have made

the rows wonky. I think in total as further down the line I had to make some

more blocks I probably had to remake 10-15. Its annoying but I have kept

them all as I will sew them together to make a bag, as I love the fabrics

I chose for the quilt. I also had to buy more backing material due to my

many cock ups with measuring. Thankfully with the new rulers those

should be less!

Oh I forgot to tell you about my EPIC mistake of accidentally having

two rotary cutting blades on my cutter. How did that happen? Well I bought

some expensive blades and they were all covered in oil. I am guessing

when I replaced a dull blade I didn’t check properly that it was just one

blade. So it cut all my material as if a hoard of hungry mice had been

chewing the side of it. Thankfully most of that could be hidden in the seam

allowance. I am telling you this because some people seem to think everything

I do is perfect and I never make a mistake. Of course I do! If I didn’t make

any mistakes I’d never learn anything. I want you to know mistakes

are ok, even if I am known on Instagram now to some people as

“Two Blades Rach”. It’s quite funny really!

Once I had made all my blocks I sat down and worked out the plan of my

triangles. It was important that I did this so I knew how my rows would

go together. I also wanted to place certain fabrics together so they had

a bigger impact rather than drowning each other out. I did a full size

quilt plan and then I broke that quilt plan down into two.

Once my blocks were made I then put them away in a box and cracked

on with a lot of makes for other people, birthday presents, thank you gifts

and of course father's day. I made Jay an Owl soft toy for father's day which

you can see on last week’s blog post. I also made him this lavender pillow

I kept putting off making my quilt as I was terrified all the blocks would be

all the wrong size and it would be a disaster. It is quite common for me to

ignore a project for a bit if I am feeling anxious about it. I also have to be

in the mood to sew certain things. I have to be in the mood to make clothes

- I find it boring and hard work because I have such a skills gap. I have to be

in the mood to quilt as it takes a long time and you can be doing the same

thing over and over. It also involves a lot of pressing which in this heat you

really don’t want to be doing. It wasn’t until I started making quilts that I

learned there was an actual difference between ironing something

and pressing something.

Last Friday I decided to bite the bullet and put this quilt together. I really

hate having WIP’s ( work in progress) hanging around and I don’t do

UFO’s (unfinished objects). I have a small house so projects need to be

completed and gone rather than hanging around collecting dust! I checked

all the sizes of the blocks and as I said earlier realised that some weren’t

good enough and needed to be done again. So that added more time

onto getting the quilt completed. For me it seems like it’s taken an absolute

age to get done but Jay assure me to him it feels like he went to work

one day and came back to a completed quilt!

I only managed to sew the rows together that day, as a lot of planning

had gone into each row. Checking against my quilt plan I put all the rows

in order using post it notes on each - with the fabric order on also, so that

the chances of me making a mistake were minimal. I have made mistakes

before with my quilt as you go quilts, where I have decided on an order

that the blocks would go in. Taken photographs, only to realise once its all

been sewn together…………..3 blocks have been sewn upside down totally

ruining the pattern I had wanted to create. At the point of discovery of

my mistake it was too late, I had sashed and bound it by then.

Lesson learned, this time I over planned!

On the Saturday I started to sew my rows together.

As it was only 8 rows it went together very quickly, however disaster

struck on the 8th and final row when I realised I had sewn the blocks

together in the wrong order. Out came my trusty seam ripper and the

blocks were then sewn in the correct order. I am so glad I managed to

catch that mistake before continuing as it would have stuck out like a

sore thumb otherwise the final row would have been completely different

to all the other. If I am honest there was a lot of unpicking as the rows were

sewn together as I managed to sew triangles together in the wrong position

etc. I never let this wind me up though, I’d rather find a mistake at this

point than like the quilt as you go first quilt I made.

I then cut ( using my stripology ruler) my borders for the quilt and sewed

those on. At this point I was just totally in awe of what I had created. My first

ever quilt top was sewn together. This was a huge moment for me! I then

decided **ck it and decided I would baste my quilt. Basting is basically

putting on your wadding and backing fabric, to the quilt top. As I didn’t

have much room I did it in two halves not ideal but there was nowhere

with enough floor space for me to work. I did it using the ironing board,

it wasn’t perfect but it was done. I used a temporary glue spray and safety

pins around the edges to ensure it was secure.

Sunday was the day I decided to quilt my quilt, that sounds bizarre but

a quilt isn’t a quilt until you have sewn all three layers together. This quilt

had a very basic pattern just straight line stitches that went through every

second row of triangles. I managed to get some floor space in the lounge

whilst everyone else was asleep and I marked out the quilting lines with a

fabric marker and my huge ruler ( another creative grids one). Thankfully

I had set my machine up the day before, so my extension table was on

( I discovered a neat trick as my extension table can move a little, especially

when I bash the edge of it by accident, so I used masking tape to keep it in

place just taping from one edge of the table to the other sticking it on the

bottom of the throat space of my machine - avoiding the needle plate. I only

used two strips of tape). I had also ensured that I had rested as much as

possible, as I wont sew when I am tired. I started quilting on Sunday

afternoon whilst Jay watched the England match. I was finished just

after half time. I forgot to say I used my walking foot. I had to unpick

a couple of little bits due to puckers and re sew them but its the neatest

quilt back I have ever sewn.

Yesterday (Monday) I decided I would make my scrappy binding and

then attach it to my quilt. I machine sewed the front of the binding in

place using a tutorial from Lucy Brennans

https://www.charmaboutyou.com/ blog.

It went on very easily and then I had the afternoon to slow sew

the binding onto the back. I finished late yesterday afternoon

( lots of frequent breaks as I have been really struggling with

double vision the last few days so that makes threading a needle

an absolute nightmare).

I had made a label for my quilt on Sunday evening but my eyes

were so bad by the time I had finished sewing the binding on that

I had to stop. I sewed my label on this morning at around 7am as

I had been up for an hour or so by then.

Once the quilt label was on it was time to give it a wash to get rid of

the temporary glue and the fabric marker from the quilt lines.

I am so pleased with this quilt I am still in shock that I made this!

And obviously I lied when I said it was going to be a little post,

hubby brought our huge fan down from the loft this morning and

put in the lounge for me. What a difference that’s made for me

and the dogs!