Health Update

After last weeks post Spondylolisthesis my back improved massively. Just yesterday I was considering dropping taking the naproxen as it hadn’t caused me any issues at all for a number of days, then I woke up this morning and bang the pain was back.

I have pushed through as much as I can today but I had to give up at 14.30 and take some diazepam. The muscles of my backside are really tight and sore. When they are like this it is a symptom of the Spondylolisthesis, it aches down the back of both my thighs and no position is comfortable. Standing feels like someone is kicking me in the arse, sitting makes my buttocks ache and I get severe pain in my coccyx. If I could lie down knowing that by doing so I wouldn’t be woken up at 2am by my back throwing a tantrum I would. So at the moment my only relief is by having a hot water bottle applied to my back ( far too hot ) and regular changes in position which makes doing anything difficult because those changes need to be made every ten minutes or so.

If I knew why my back had kicked off so much today I would be happier, I didn’t use my sewing or embroidery machines at all yesterday. We had a relatively lazy day but even in that we were moving around and I certainly wasn’t static for hours at a time. Which I know does cause me issues, so I am at a loss. I have avoided all the things I am supposed to like lifting – can’t do that anyway, staying static for too long. All I can think is that I have turned weirdly in my sleep and hyper-extended my spine and it is letting me know today that it didn’t like it.

I have always found wherever possible distraction is the best possible thing to combat pain but some pain is just so strong that no amount of distraction can stop those nerve signals being acknowledged by your brain. That is why I like sewing / embroidery / crochet as it means I can distract myself most of the time but today it hasn’t mattered what I have done those pain signals are just getting stronger and stronger. I am very glad that we now have a dog walker who takes Dembe out for an hour when Jay is on a late night as it means Dembe settles very quickly in the evening and I will be able to go to bed and attempt to get comfortable relatively early on tonight. Rather than Dembe needing mental stimulation for 90 minutes or so, to tire him out and get him to wind down for the day. 

Much of the last few days has also been spent on high alert as from now until the 23rd (ish) I am on migraine watch. This week of the month is usually when it strikes. Yesterday ( Tuesday) I was convinced it was going to be today as I was starving hungry all day with nothing satisfying me. I am still trying to work out what the signals are that I am going to end up having a migraine but there is nothing I can say is 100% concrete that is a definite clue that it is going to happen. I have noticed mood changes the day before, hunger and sometimes the evening before my vision goes a bit weird. However it doesn’t happen on each one, which means sometimes these things happen, I get frightened because they have been so bad and then nothing. Which is exactly what happened last night. 

I am a few weeks into the Migraine Clinic protocol and they advise that you really need to have been doing it for around 3 months before you can say if it has had any effect on your migraines. You can find the protocol HERE. So it is too early to say at the moment, also I have been known to skip a months migraine and have it two weeks later so a cycle of 6 weeks rather than 4 weekly. That is the major issue I won’t know when the next one is coming. I have worked out that dehydration is a trigger but it is a rare trigger as due to my excessive thirst I do tend to drink much more than the average person. The day in question when I did suffer a migraine it followed a day where I had been drinking alcohol from around 2pm in the afternoon (Cider at 4% so not the hard stuff). Because I didn’t have any additional fluids I am pretty sure that is what triggered that one and I had to use my emergency meds. I was very grateful that I did have my grab bag made and everything in one place as it meant I could take the meds and get my head down.

I have been religiously taking my supplements and even managing to remember to take the midday dose of the one I have to take three times a day. A new alarm on my phone helps me remember!

As sitting is literally a massive pain in the butt and I am having to type this sitting down I am going to wrap this up now. Plus I took half a diazepam about an hour ago and that starts messing with concentration levels. Plus I want to tidy up a bit before Dembe gets back from his yomp on the common!

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.