Well to be perfectly honest there isn't an awful lot to talk about other than the C word which I really didn't want to talk about for the third week on the bounce. But as things have changed dramatically here in the UK - we are now on a half arsed lock down ( I say half arsed because so many people are completely ignoring it). And now hubby will be home with me for the next 12 weeks.
Thankfully hubby isn't in the 1.5 million that the NHS have put into the the very high risk group who have been asked not to leave their homes in the next 12 weeks. He is though in the next group down which is high risk. Basically this means he is at high risk of serious complications or death should he contract Covid -19. I found this out purely by accident on Monday when discussing it with a friend and fellow moderator on Facebook when she posted a link to the Asthma UK website that had detailed information on what Asthma inhaler mean you are considered to be on immunosuppression medication. My blood ran cold as I saw on the list Symbicort the brand my husband uses daily. I dug a little deeper and calmed a little when I read the dosage required and thankfully he is nowhere near that dosage. It then lead me to then google for information regarding methotrexate as that was increased in August to 20mg. The last dose before he would have been put on injections to control his psoriasis.
Now if I am honest I am a little cross that gp surgeries aren't checking to see what patients come under the high risk category. The very high risk group were sent a text or may still be waiting for a letter that should be with them by the 29th March. These are the people who will have the worst outcome should they contract Covid-19. People like Jays mum, who has multiple myeloma , a type of blood cancer. Thankfully Jays parents have taken the sensible precaution of self isolating for the last month. My parents are also self isolating, my dad will be 70 this year, my mum is in remission from ovarian cancer. People are having to search for the information themselves - and not all conditions are listed on it leading to a lot of confusion. Plus many people, my husband included just didn't see himself as vulnerable. His asthma is well controlled, he has been on methotrexate for 6 years without issue. He rarely takes time off sick from work, he gets the odd cold but isn't a sick person. So to now discover he was deemed high risk was a shock. A shock that he is struggling to process.
I know that now everyone has now been told to stay in doors but for almost two weeks hubby was exposed to massive amounts of people who may or may not have been spreading this virus. It took me googling it on Monday and coming across this official NHS document to see that due to his dose of methotrexate and the co-morbidity of Asthma he was now considered high risk. The irony is he was sending all the high risk staff home from his work place last week, on full pay for 12 weeks ( 2 weeks have to be taken as holiday). The high risk group also included anyone with a BMI of 40 or over. I am cross because he could have been home and not putting himself at risk. I am also cross with him because despite showing him the document, printing it off for him and explaining it to him, he didn't believe me. He tried to get information from the doctors surgery, he was unaware that the doctors surgery is effectively closed and you can no longer just walk in off the street. He doesn't really do social media, doesn't read the news papers and kept turning off the news, so he was blissfully unaware of what was going on outside his work bubble. Laughably he also tried ringing 111 for information and was given short shrift by the call handler who basically told him don't ring this number unless you have symptoms of Covid-19.
So now I know for sure that he doesn't pay much attention to me when I am speaking to him as I had talked him through all of this. He seemed to think it was happening elsewhere to other people and I am guessing that is the same reaction for a lot of other people because the lock down is laughable. The roads up to the common have been busier than ever and a lot of people without dogs, with small children even babies are up there. Now I know we are allowed out to exercise but honestly if I had a new born baby I wouldn't be leaving the house and risking it's health. We are only going out to walk Dembe ( I sit in the car) because he won't poo or wee in the garden. We try to go when normally it would be quiet, as we have every day since 2004. It is like a bloody bank holiday up there. On our way to the common we saw families out on their bikes cycling together, again no dog. I am really struggling to wonder why if you had no reason to leave your home you would?
It took Boris's speech on TV on Monday night, when he called for the lock down for Jay to realise that this was serious. After Boris had stopped talking he turned to me and said," I've told XXXX ( his boss, who is lovely), that's me home for 12 weeks. I love my work but I am not dying for it." I burst into tears as I had been at my wits end with him. I couldn't get him to see how dangerous this was especially with him being asthmatic. The relief was unreal.
However in true Mr Myasthenia Kid style the following morning he had a series of melt downs. Which I was expecting to be honest as the longer we are together the more glaringly obvious it is becoming that he is very likely on the Autistic Spectrum. He becomes irrationally angry when confronted with change. He doesn't deviate from journey routes, dog walks, places we go etc. Literally even a suggestion of change will get my head ripped off. I learned a long time ago that unless it was life and death not to bother. He also has to have things broken down in to the minutest detail. I remember years ago when our first dog Travis was ill and in the vets, he badgered me constantly about what they were doing. I tried to give him answers but he kept on and on. In the end I lost my temper and screamed how the fuck would I know I am not a bloody vet. His anxiety was off the scale and when he feels like things have deviated from his routine his default setting is anxiety.
So despite knowing that he would be paid for his absence, he still insisted on messaging HR and having the same conversation with with them, that he had with his boss the night before. Despite also knowing the policy having sent home staff the week before. He was in a right state until he had the text from HR confirming he wouldn't lose any pay. He was in such a state I told him that we would put together a schedule for him so that he would have a routine and a plan for each day. Because without this I know he will fall into a depression. I really struggled to deal with it yesterday as Tuesday is pretty much, 99% of the time his day off. So the fact he wasn't working yesterday shouldn't have been an issue. However it was the anxiety around not working that was causing the melt down.
It is really hard work having to stay one step ahead of him and basically have to guess what the issues are because he doesn't verbalise it. He has told me he is taking this 12 week period a day at a time rather than thinking about it as 12 weeks or even telling himself it will be June before he is back at work, is causing him to be anxious. It is such an enormous change in his life that it is sending him into melt down mode. He is also feeling the guilt that he isn't working alongside his team, who are working in the germ soup that is a supermarket. He knows rationally that staying at work is risking his life but he feels guilty that others ( although they aren't high risk or if they are high risk have declined due to being able to work in an office) will be in that situation day in day out, to keep the country supplied with food.
So his plans are to do some decorating, refurbishing some furniture with Tuesday's and Sundays as his days off as they would always be in a normal week because we need to keep things as normal as possible.
I am feeling a lot less anxious now that I know that he isn't being exposed to god knows what. However the stress levels had obviously been building up over time with me and last night I came down with a migraine. Initially I had hoped I would sleep it off but at 2.15am I was woken with severe pain in the right side of my head and face. I took all my meds and then managed to get back to sleep only stirring at 4.45am when Jay got up and managing to mumble hot water bottle. I managed to stay in bed until 6.30am and then had to get up as my back was killing me. Thankfully by the time I got up the pain had reduced to that of just a bad headache and I knew by then distraction would be better than any pain killer I could take so continued with my day as usual. In the middle of the night I was cursing myself for not getting my blog post written up but thankfully even with helping ( more like supervising) Jay get the table sanded and waxed today I have still managed to get a blog post out.
I hope everyone is keeping well and safe. One day we may even look back on this and laugh, if we are lucky enough to get through it.
Take care
Dembe decided barking at the sander was the way to go! He also tried to get it to do zoomies with him, strange beast.
Sanded and waxed - the biro and lipstick marks removed and it is looking fantastic again
I really hoped that last weeks post would be the only one that I would write on Covid-19 but as the world seems to have gone to hell in a hand basket and we aren't even in the worst of it yet, simply put it is a subject we just can't get away from because it is impacting almost every aspect of my life currently.
However I can't help but feel slightly irked at the melodramatics shown by people whom are healthy in every way and have in all likely-hood a very good chance of getting out of this alive that are walking around moaning like they are a doctor or nurse on the front line or have been exposed to Covid-19. I am so glad in some respects that my inner circle has got so much smaller because I would have probably been arrested for assault after slapping them around the face and telling them to pull themselves the fuck together. They are so inward looking only worried about themselves that they really don't see they are at far greater risk of being strangled by their colleagues than catching it currently. This is really for the want of a better saying sorting out the men from the boys.
Amongst the chronically sick groups I belong to we are having a chuckle at you healthy individuals losing your shit over having to stay at home for 2 weeks ( if someone in your house is showing symptoms) or 12 weeks for the over 70's / high risk groups. We have our own memes asking if you have tried yoga or kale to get better. It is hilarious that after such a long time ( for me I have been pretty much self isolating for 12 years) the tables have been turned and some of you will have a chance to see what it is like being separated from the rest of society through no fault of your own other than to get sick or be in a household with someone who is sick. Let me be clear no one from the chronically sick world wants you or anyone else to get Covid-19, we wouldn't wish that or any other illness on our worst enemies. We just want you to understand what our experience has been like for however many years we have lived it.
Many of us in the chronically sick / disabled world had no choice about our self isolation. Once we got sick and had to withdraw from normal everyday life our worlds shrank. Initially there may have been offers of help and support. Friends ( if you were lucky ) may have visited from time to time but as the years ticked by and they got bored, our worlds shrank even more. I know I found that I literally had to keep the conversations going, be the one to constantly keep in contact with them, otherwise I heard nothing at all from them. Over time that has dwindled away which was why I was so keen to start my crafting group The Stitchin' Bitches - more on that in a bit.
Whilst I am heartened to see whole communities rallying behind those who are too frail to go shopping or are having to isolate due to having suspected Covid-19. I can't help but feel a little bitter that it was a crisis like this that was needed for some people to get the help they needed everyday not just now. I also wonder if this goes on for a long time 6 months plus if compassion fatigue will set in. Will people still be looking out for each other when this has blown over ( at the moment that feels a very long way off). I do fear t that once things get back to normal those of your forced into isolation will forget the experience and be no kinder to the chronically sick community than you were before all of this.
My crafting group The Stitchin' Bitches of which we had 3 wonderful meetings that was thoroughly enjoyed by everyone has been postponed until it is safe for us all to meet up again. One member has COPD, one is immune suppressed, another has asthma ( badly), the other has a husband on fairly strong immunosuppressants. We are a really healthy bunch LOL. Out of all of them I considered myself the least vulnerable until the announcement on Monday evening and as I have the flu jab I am now considered vulnerable. I am not sure why I get the flu jab for free, it could be due to the oxygen that I use on an adhoc basis or the fact I have PoTs / EDS. My husband gets his due to asthma and with him on methotrexate I actually consider him higher risk than myself. So for now all non essential visits to my house have been suspended as I try to limit my exposure to the outside world as much as possible.
Due to simple economic's hubby can't self isolate for 12 weeks ( the current advice) we don't have a mortgage and bill fairy that will come and bail us out. There are hundreds of thousands like us unable to follow the advice because of inadequate financial support if we do. Sure he could take a 3 month career break from work but it would be unpaid. So again do we chose to self isolate or to eat. It's a very real question facing many of us in a country whose leadership have chosen ideology and economy over human lives. Now if he gets ill or shows symptoms of this virus we will both isolate ourselves for the required 2 weeks. He will get paid for that as his company ( and very well done to them for doing that) are paying people who are having to self isolate for the two week period. But to actually stop working until this blows over is a privilege that only the richest in society can afford. I did have a laugh at Virgin asking its staff to take 8 weeks unpaid off work. What out of touch moron thinks that their staff can afford to do that?
It is really hard not to get anxious about the whole situation, especially when my husband who is normally so detached from the real world it gets irritating, is starting to panic. At the end of last week after the blog post was published lots of people reached out to ensure I was ok. To be fair on the Thursday I was, on the Friday I was a mess. Thankfully I was well enough to do some fabric preparation for projects that I want to start and as that was all measuring and cutting out, I couldn't let my mind wander and go down the rabbit hole. I swing from being utterly terrified to what will be will be, at an alarming rate. Things seemed to have settled down a bit, we aren't watching the news constantly and we are practising increased hygiene routines at home.
There isn't a surface in the house that hasn't been sprayed with Zoflora at least twice a day! Including Tv remotes, phones and Chromebooks. In fact as soon as the spray bottle comes out Dembe runs upstairs. I am pretty sure he thinks he is going to get sprayed!
We have jointly decided after this dog training course ends ( only one session after tonight's session ) we will be taking a break. We will be cutting out all non essential travel and socialising. It just isn't worth the risk and although the training session is hardly crowded, it takes place in a huge barn, its just mixing with more people. People that maybe super spreaders or have symptoms but drag themselves there. I have already seen someone that was supposed to be isolating themselves for 7 days ( before the change to 14 days ) posting photos on social media with them out and about. With people still not taking it seriously, we aren't prepared to put ourselves at risk due to their stupidity. I am sad about not continuing with the dog training for the time being as some weeks dog training is the only time I see other people other than Jay. Although we don't stand around and chat just being with other people has done wonders for my mental health so the next few months are going to be tough, when I have got used to seeing people again. But I coped for the 12 years previously and will cope again.
Now when hubby rings me from work on his tea breaks he automatically asks how I am and then I do the same for him. His response this morning was " well I am ok for the moment, but there are more people now absent from work self isolating". In a store where they have been cheek by jowl with panic buyers in there thousands for well over a week now is it any wonder that the staff have been exposed. Obviously none of the cases are confirmed as people are only being tested if they are hospitalised, thankfully no one yet out of the staff has been seriously ill enough to be hospitalised. But it everyone is in limbo not knowing if they have had it or if it was just one of the many bugs doing the rounds at the moment due to the lack of testing taking place.
We have at the moment no idea what the future holds. We live in interesting times.
I sincerely doubt that this will be the last time I blog about the subject.
Who knew you would be considered rich if you have more than 4 toilet rolls? - a little light relief.
***
I keep meaning to say that hubby had the dentist back at the end of February and his Dentist complained to him then that they were struggling at the practice to get face masks and other protective equipment. That was around February 28th, I am writing this on 17th March and things have only got worse since then. If the dentists are finding hard imagine what it is like for hospitals. Many doctors are coming out and saying they can't get the proper equipment to ensure that they don't get exposed whilst treating patients. As I said earlier hell in a hand basket and this thing has only just started.
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.
I am really struggling at the moment with making the time for blogging and coming up with ideas / subjects to blog about. It has been crazy busy here with decorating all last week - hubby's bedroom and I have seriously overdone it. I have ended up having naps in the afternoon which is something I haven't done for probably a good ten years if not more and I still can't shake the overwhelming fatigue I seem to be suffering with.
I don't even seem to have much energy for sewing. I have a very small window of opportunity in the morning and then by 2pm I am yawning my head off barely able to speak I am so tired. It is as frustrating as it is ridiculous as I really don't know what it is that is draining me so much. I could blame the menopause - that is making me much more emotional than normal or perhaps its the fact that I stopped my progesterone only contraceptive pill back in December. I know when I was first put on it many years ago it was one of the few things that stabilised my symptoms along with salt tablets. Whilst it now takes a lot for me to notice my usual PoTs symptoms I am wondering if the fatigue is down to low blood pressure as I am back to crashing immediately after eating despite reducing meals, switching to low carb and drinking coffee so strong you could stand a spoon in it.
Last week I was helping out doing all the sit down jobs I could, painting skirting boards, cutting in etc. Even though we were only working for small periods of time each day I found it utterly exhausting to the point I was going to bed at 5 -6pm and just going to sleep until the following morning. Where as in the months before I had been staying up until gone 10-11pm watching TV and just not feeling tired. There is so much I want to do but I am now struggling to motivate myself to get moving. I am just hoping that it is last weeks over exertion that has done it and that it will sort itself out...eventually. If I pace myself this week.....me and pacing is a bit of an issue as I never seem to have ever worked out the balance between activity and rest. Although this week I am so knackered I am having to rest.
I did have the doctors yesterday after my worst migraine ever experience on 20th February. Normally I wouldn't go running to the doctor with a migraine, I get about two a month and as I don't work I have just sort have let them go and not demanded better treatment. However the last two I have had have been so bad that Jay has had to take time off work to look after me. Now although his work have been very accommodating, I don't want him using his annual leave so that he doesn't lose pay when he has to take the time off. Plus it isn't fair on him not only having the stress of me being so poorly at home and then having to deal with (potentially) colleagues and senior managers who become less and less sympathetic due to the amount of time he takes off. I hate it when my illness impacts his work because it is something outside of his control. On the 20th I really couldn't be left as I was barely conscious and when I was I was just projectile vomiting everywhere. I couldn't have looked after myself let alone Dembe.
The doctors appointment went well, it was a doctor I haven't seen at the practice before. She thinks that as I had a migraine within my period of amnesia - so I have lost Wednesday 19th / Thursday 20th / Friday 21st and have hazy recollections of Saturday 22nd, it is more likely that this was a severe migraine attack. She was however unsure as to why I had never been given triptans for my migraine as I have had numerous visits over the years for them and they have been becoming more frequent. Also she told me that our town is currently awash with sickness bug and she is wondering if I was just incredibly unlucky and have come down with a sickness bug at the same time as a migraine as normally you would vomit and then start to feel better. I have no clue. All I know is whenever I have a migraine I have a hideous bout of nausea and once in a while I puke. This migraine though was different in the fact that I couldn't stop puking and I couldn't keep anything down. She also thinks the menopause is well underway.
So the upshot is that she is contacting the neurology department at the city hospital and seeing what they say with regards to if they want to see me, if I can be started on triptans etc. She did agree with me that the migraines are being triggered by my unstable neck. Also my migraines are coinciding with my physiotherapy appointments - which I am having due to the nerve trapped in my neck. The last session I had was on the 18th February and she barely touched my neck but as usual 48 hours later I got the worst migraine of my life. It is so frustrating that by trying to avoid surgery for this trapped nerve I am causing myself a bloody migraine.
I should hear back from Neurology within a week and the doctor said I should receive a call from them to let me know what the advice is. The good news is the doctor was pretty sure I hadn't suffered a stroke / TIA which was my fear with the pain being so bad and the vomiting. I remember briefly worrying that I might have meningitis as I simply didn't recall ever feeling so bad in my life. A little dramatic I know but I really can't put into words just how awful it was.
I would give you more details from the migraine but my memory is just so bloody hazy that other than having my head in my waste paper bin and telling myself that I was never eating broccoli again - I ate that the night before and believe me the second time around it isn't that nice. There isn't much to tell, I was in a dark room getting annoyed and confused with the world service who I thought kept repeating the same news article over and over. When it was in fact me that was passing out / sleeping and then coming around again just as that news article was featured....again. I remember Jay asking if I wanted him to call for an ambulance as he was worried I was much more seriously ill than I was letting on. I can remember telling him no and that was purely because I didn't want to move at all. My memory from that week is patchy like a dream you are trying to recall and as that is not a symptom I have ever suffered from I thought it best to get it checked out.
So I am afraid this is my pitiful offering this week. Hopefully after yet another week of taking it easier I will have bounced back.
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