Month: March 2020

The C word

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

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

Hell in a Hand Basket

/ RachelMorrisMcGeethemyastheniakid / 2 Comments

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.

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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.