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.

New Things

Six weeks ago I did something crazy. It had been in my head since before Christmas and I had been spending an age mulling it over too scared to say it out loud. It took until after Christmas for me to even say to anyone what I had been dreaming up.  One day I mentioned to my husband what my idea was, he assured me it wasn’t that crazy and that if I didn’t try I would never know.

To some this idea won’t sound that crazy at all but believe me it sent my anxiety into over drive. My big plan. my crazy idea, wasn’t really out there at all. I just wanted to start up a monthly coffee morning for like minded crafting friends who would like to learn new skills, solve a craft problem, get hints and tips etc. I will be honest  through 2019 I was a bit of a hermit, some of it self imposed, some of it well read my post Reflections and you decide. I was going months and I mean months without seeing anyone other than Mr Myasthenia Kid or Dembe. Ok so that is a bit of a half truth there as we were going to dog training but a 5 minute conversation once a week with someone other than my husband is not socialising. Especially when the topic is just Dembe or dogs in general. My mental health was being crushed, although creatively I had never felt so fulfilled as my sewing / embroidery had taken on a new direction. My anxiety was really getting bad around social interactions because I literally just wasn’t seeing anyone.

Chronic health conditions impact so much of my life, it limits the time I can spend doing it. I would love to run a small business selling items but my body couldn’t cope with the work load that something like an Etsy shop would produce. I can’t do craft fayres as I couldn’t sit there all day without then being sick and exhausted for weeks after. Crafting is my life it gives me the reason to get up and keep going every morning. Without it I would be very lost. However part of crafting is sharing your triumphs and disasters. Whilst there are various Facebook groups ( some of which are very supportive, others are like a nest of vipers) it isn’t the same as actually speaking to a real live human being. I can no longer drive as I lost my driving licence 5 years ago due to my medical conditions. Public transport is too hard going for me. I rely on Mr Myasthenia Kid if I want to go anywhere so attending guild meetings hasn’t been easy due to his work schedule. I wanted something that combined my love and appreciation for all crafts and a social atmosphere. So I took the plunge.

I knew the name I wanted for the group – “The Stitchin’ Bitches”, I also knew due to the size of my house numbers would have to be limited, if anyone wanted to come at all. A friend of mine reached out regarding a crochet issue she was having, we are both self taught and only in the last few months. I casually mentioned in my response that should I start up a group for us to meet and discuss our crochet ( and other crafts) would she be interested. She almost bit my hand off, she would be extremely interested in it and what a good idea. 

Even though I had this positive response I still left it at least a week until I built up the courage to put up a post on my Facebook timeline asking if there were any like minded crafter’s like me that wanted to meet up on a monthly basis and do crafts together. Be it crochet, knitting, embroidery, sewing. I had a lot of responses but it was from people in different parts of the country saying that they wished they lived near me as they would be there like a shot. Initially responses from local friends was slow, embarrassingly so. I was starting to think that maybe there wasn’t any desire from any of my friends ( other than the first one I spoke with). Determined not to take the lack of response from my first post as the definitive answer I posted several more times. Each time I got responses from people outside the area that I lived , even the friends I have made world wide via various health forums wanted to come. But in the end I had 4 people interested which was a good number – remember I live in a tiny house.

I set up a private Facebook group for us all to be able to post in and then set up a poll so that they could let me know what days suited them best to hold a meeting. I had envisioned when I first embarked on this idea that it would be one hour a month – which for me was fine as it would give me time to recover and give me some social time. We decided Mondays were best and set the date for our very first meeting of The Stitchin’ Bitches – they all loved the name by the way! I think we sort of sound like a Country and Western group LOL!

Initially it all seemed fine until my anxiety kicked in the day before our first meeting on Monday 10th February. I was just terrified that the meeting would be a flop, that people wouldn’t speak to each other or that after 30 minutes people would be racing to get out the door. I was so anxious I barely got more than 2 hours sleep, I tossed and turned all night. This would be me hosting an event ( thankfully all my friends know I am poorly and will pitch in with making drinks etc if needed)  without my safety blanket of Mr Myasthenia Kid. Also some of the people attending I hadn’t actually seen since I left work in 2008. For me it was a huge gamble. I am always really anxious when people come to the house anyway, I worry that they think it is dirty or uncared for etc. Its hard to keep on top of stuff when you aren’t well and all the DIY stuff falls on one partner. So I know there are some places crying out to be redecorated etc. I was also worried about people judging me, on the outside I don’t look sick but every day is a battle of some sorts. I worry that people think I am taking the piss because no one ever see’s me when I am really poorly.

Monday 10th February seemed to come around so quickly. By the time 11am arrived I was pretty knackered just from the sheer anxiety creating this “event” had caused. I really shouldn’t have worried. I also wasn’t the only one who had been anxious, a friend confided in me on leaving she had been terrified to attend. As for thinking they would all be racing for the door at 11.30am nothing could have been further from the truth. It was 13.30 that the last person left and the first person had only gone around 15 minutes before that. I had been concerned due to the fact that we all had one work place in common that we would end up discussing that but again nothing could have been further from the truth. It was barely mentioned and that was only as people left. It was just so lovely to have a few hours with people whose eyes didn’t glaze over when crafts were mentioned. I know I can get very passionate about my projects, so it was nice to answer peoples questions about the techniques I had used etc. It was equally nice to see what my friends had been up to. For all of us it was so uplifting to get out of the house and socialise – obviously I didnt go far!

The really nice thing was that as the meeting / gathering was drawing to a close one of the lady’s said “Rach, any chance we can do this once a fortnight? I don’t think once a week is enough”. Everyone else was in agreement also. I said immediately that no one would “have” to come to every session especially if they felt fortnightly was too much, that I was happy for people to dip in and out as needed. But the buzz the morning had created was so great that we set up the next few weeks worth of meetings. I was so proud of myself and what our little group had achieved. I posted on my Instagram account about it and now several other people dotted around the country have decided that they are going to do the same thing. Which is really lovely as it is such a boost for your mental health and to stop the isolation that is all too common in the world.

Today (Monday 24th March) we held the second meeting and today we had the grand total of 7 people here (including me). Dembe was like a dog with two tails, with all the love and fuss he got from everyone. Today two members learned how to start to crochet – slip knot, chain stitches and then double crochet ( UK ). Another lady had a refresher on crochet and learned how to do a Granny Square for the first time. In the corner a lady was being taught to knit. Mr Myasthenia Kid is on holiday this week from work and made himself scarce for a bit having a wander around the town. However he said the buzz and positivity he got from the room when he came home was amazing. He said he was so proud of me for being so brave to try and do something to end my own social isolation. He did make us all laugh as when he walked in he said “good god is this the budget version of the Playboy mansion”. Considering our age ranges were from 21 to 70’s it was hilarious. 

We were also spoiled by a new member who brought homemade scones, jam and cream for us to have as a crafting snack! And bloody gorgeous they were too. I had decided yesterday to make everyone little paper tissue holders as a way of saying thank you for coming and making it such a success. 

I can’t lie after every meeting I have been utterly exhausted. If I knew that it wouldn’t impact my nights sleep I would go for a nap in the afternoon. Mondays after are written off with me having a lazy restful afternoon on the sofa but mentally I feel so uplifted and happy. I am so glad that I pushed myself to do something totally outside my comfort zone and I hope I inspire others to take that chance and do new things.

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On Thursday 20th February, I had the worst migraine I have ever had in my life. It was so bad that I am actually suffering from amnesia caused by it. I have “lost” most of Wednesday 19th, the majority of Thursday 20th, Friday 21st quite a bit is unrecoverable as is Saturday 22nd.  It is only from yesterday on-wards that I can recall anything that happened during the day with any clarity.  I won’t lie this has scared the shit out of me. Which is why I haven’t done a huge detailed blog post because basically I don’t know what happened to last week. I have a gp appointment booked because I need to know that this was just a horrific migraine and that I can be referred to see a headache specialist or if it was something like a TIA that can also be looked into. Having Google at our finger tips can be a curse and a blessing but as I can’t account for much of last week and this has never happened to me before with a migraine I can’t just ignore what has happened. Anyone who knows me also knows that I don’t run to the doctors every 5 minutes so it has really shit me up.

As soon as I know you will know.