Mestinon

Covid 19 / Corona Virus

/ RachelMorrisMcGeethemyastheniakid / 10 Comments

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.

Consequences

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

I went out on Sunday with friends…. I know that sentence seems bizarre. It is something I haven’t done in 12 years. On the surface it may appear to some that to attempt such a thing must mean that I am doing better. I mean I left the house and socialised for 6 hours. What they didn’t see was the fact there were days of pacing so activity followed by rest periods. Massive amounts of ensuring I got my medications scheduled at the right time and attempting not to let my anxiety take over.

We planned going to the create and craft show back in July. As the ticket only cost £8, I was prepared to lose it if on the day I woke up and wasn’t well enough to attend. It seemed so far off in the future the 29th September that it may as well been a year away. So when I realised it was the coming weekend it set me into a panic. My biggest fear was becoming ill away from home and then ruining the day for my friends.

The anxiety leading up to this event was off the chart. I lost a few nights sleep over it. I kept catastrophizing, what if’s? The stupid thing is many of these what if’s have never happened. It was a fear of the unknown, of never having been to a Create and Craft show or knowing how busy it would be.  Surprisingly the morning of the show the anxiety had subsided and I was able to look ahead to the day. I was almost relaxed which then made me anxious.

I had more medication on me than a pharmacy to cover me for every eventuality.  I had my 4 hourly meds – pyridostigmine and pseudoephedrine to ensure that my blood pressure remained high enough for me to remain vertical and not suffer horrendous fatigue. Extra pain relief in case sitting on my scooter for all that time caused muscle spasms or just pain. Stugeron in case my vertigo decided to kick off and cause me problems. Taken at the earliest opportunity it can stop an attack in its tracks. Buscopan, in case due to nerves my bowel adhesion pain decided to pop up and make itself known. Paracetamol – to give me extra back up for my pain relief. I decanted oramorph ( liquid morphine) into a smaller bottle so I didn’t have to carry a huge one with me. Alarms were set on my phone, compression socks on, allergy lists, medication lists and medical condition lists were safely stowed in my bag. Along with a list of my doctors and next of kin. All this and I was only leaving the house for a few hours. If that all sounds like someone who is doing better let me know.

Every trick in my book was employed to ensure that I would be able to cope with this trip out ( as a one off ). Everything that could be done in advance of Sunday was done. Clothes for the day sorted by Wednesday, down to underwear and compression stockings. All clothes had to be comfortable, in layers so that I could be warm or cooler depending on how my temperature decided to behave on the day. Normally I am always cold. All medicines, allergy lists, medical info was printed out weeks in advance and kept in an envelope so on the day ( or day before ) it could just be slipped into my bag. My bag was packed on Friday and Saturday, last minute items Chilly bottles of drinks were added on Sunday morning. Nothing was left to chance. Every eventuality was planned for. Jay would be staying at home with Dembe and would be ready to come and get me should I need collecting early.

The day itself was fantastic, I managed to chat to lots of people. I met the ladies behind the scrap-busting quilt challenge from Sugar Bowl Crafts and bought half a metre of material from then, some Anna Maria Horner fabric. I chatted at length to the local branch of the Embroidery Guild and would have signed up to attend meetings had they not taken place on a Saturday. Not driving and having hubby work in retail meaning Saturdays off are like gold dust means I miss out on a lot of things. I also spent a great deal of time talking to the Quilters Guild  region 4 which is my region. I am now considering entering a quilt into the novice category of The Festival of Quilts as 2020 is the last year I would be able to enter this category. You have to have been sewing less than 3 years, I started October 7th 2017.

I could have spent an absolute fortune on fabric. There were just so many beautiful fabrics from so many different designers. I managed to pick myself up some bargains. I got some gorgeous fat quarters, some Christmas and some non Christmas.

 

I managed to pick up some good quality thread for £1 a reel. The pinky one is for me to finish a cushion cover as I didn’t have any threads that were even close to the colour of the fabric. The blue thread is for my Christmas table runners. As I tried applique on my embroidery machine last week for the first time, I absolutely loved it.

Yesterday I found out my snowmen are going to be the Brother Embroidery machine group that I belong to banner for the month. Which was a wonderful surprise.

A lot of my Christmas fabric was bought to make Snowmen and Father Christmas table runners as gifts. So I went in with a set list and didn’t deviate from my plan. It would have been incredibly easy to go mad but I have so much fabric that I need to only buy what I need, not what I want! Or I will have to make another scrap-busting quilt very soon!

By the time we had finished at the show I was getting cold and exhausted. I was in bed by 6.15pm as I could no longer hold myself upright and had already suffered a bad fall in the kitchen about a hour earlier caused by being over tired. I was asleep before 8pm and slept all the way through waking at around 6.30am. By 7am I had badly scalded myself with steam from the kettle so Monday was effectively written off as I spent the day on the sofa with my hand in a bowl of cold water.

Yesterday was pretty quiet too although I did manage to stitch out a cushion front for a friend. Only because hubby was home and I didn’t have to do anything other than look after myself. I managed to forget to take my blood pressure boosting medications so by 4pm I was wondering if I would make it to dog training. I took my medication and had two cups of coffee and that saw me through. However this morning…Wednesday all the activity has caught up with me and I feel hungover, the concentration span of a gnat and every part of my body hurts.

I knew that I wouldn’t get away with going out unscathed, I am a little surprised that it has taken over 48 hours to hit me properly. Normally it is 24 hours before I feel an outings / events full effects. But this was a huge deal and I had probably kept myself going with the adrenaline still firing and the fact Monday I couldn’t do anything and I was still limited yesterday. There are always consequences, I will always end up paying for enjoying myself. I can’t complain it is far worse not to have done anything and still wake up feeling like you have been run over by a truck. I might not look that sick but looks are very deceiving. Only people who really know me, know how I look when I am taking a nosedive. This morning I only had to catch sight of myself in the mirror to know that this was the day I would be paying for trying to be normal.

So it was a huge deal for me going out on Sunday, it wont be a regular thing as I don’t want to spend days recovering no matter how much I enjoy myself. This is now recovery day three and this is the most multisystemic one. Today my blood pressure is misbehaving, I am white as a sheet and my pain is at a higher level than the norm. I would love nothing more than to announce that my health has made such a significant improval that a trip out with friends had no consequences for me but sadly that just isn’t the case.

Massive thank you to Alison and Tracey for looking after me. Also Chris for driving us.