The C word

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

Reflections

The start of a new year always makes me a little reflective. I always think that now I am in my forties I should have my shit together. When I was a teenager people in their forties all seemed to know what they were doing, were confident and self assured. Now I am in my forties I realise like everyone else my age that those forty year old’s I admired were just winging it. No one has got their shit together and we all are just making it up as we go along. All that those 40 year old’s had that I didn’t as a teenager was life experience. I don’t think there will ever be a eureka moment in my life where I feel like I have figured everything out. I think I will forever be winging it and pretending that I know what the hell I am doing.

As you get older I do think you appreciate the simpler things in life. You put home, happiness and friendships above the material things. You also start to refuse to put up with so much crap or maybe it is you finally get the courage to start putting yourself first for a change. At the end of last year I made some quite sweeping changes. I reassessed some relationships, I binned some, I reinvigorated others. I pushed myself to make an effort with those I didn’t want to lose. It is funny during the hard times you really notice who runs towards you and who runs away. And there is the third group of people those that in public or on a public forum make all the right noises but do nothing practically to help.I have noticed this a lot over the last 4 years.

 Those of you who follow the blog or know me personally know that basically over the last 4 years Mr Myasthenia Kid and I have been to hell and back. Briefly ( which is a laugh as even briefly so much has happened each event is a blog post in itself) in 2016 I developed a CSF leak which left me confined to my bed for much of the year and if not in bed lying down. It made socialising very hard, several of my friends were wonderful but one in particular would make all the right noises you know the “just let me know if you need anything” and when you did ask you were met with radio silence or a long list of excuses as to why they couldn’t help. I will never ever be able to repay Imogen for how she helped us during that year, looking after the dogs at the drop of a hat for 8 hours whilst I got treatment at a hospital an hour away. Same for my parents who when Imogen couldn’t help would come up and drive me back down to the hospital a journey of over 100 miles. 

In 2017 we lost our dear friend of over 20 years, Andrew, in a car accident, his passing made me realise I needed to make more of an effort to stay in contact with my friends as none of us are guaranteed a tomorrow let alone a next week. In this year I also lost a family friend of many years who I would have regular conversations with via Facebook Messenger and telephone calls, although we never met in person. Later that year I was to learn my Grandmother and my dear friend Pam ( my neighbour twice and the person I saw most other than my husband) had both been diagnosed with lung cancer, Willow our 11 year old Weimaraner passed away on December 15th and it broke my heart. Due to the events of the following January I don’t think we ever mourned her passing properly. Both Imogen and Heather rushed to my side that day. Another friend offered but I realised at that point that I didn’t want her there at the time I was surprised by my feelings but let it pass thinking it was grief.

In January 2018 we lost both my Grandmother and Pam, despite knowing that both their diagnosis had been terminal we had lived in a bubble that it wasn’t going to happen. I had many conversations with Pam, she moved between despair and complete denial. It was emotionally hard going for me, which probably sounds quite selfish and self absorbed but I challenge anyone to listen to your friend of over 20 years talk about the fact they are dying and walk away untouched. Pam passed away the same week Andrew had a year earlier, which I have always found quite bizarre, especially since Pam had accompanied Jay and I to Andrews funeral less than a year earlier.

 We had no idea then at the ticking time bomb that was contained within Pam’s body. Looking back now there were subtle signs that something wasn’t right, she had looked really tired all the time etc a whole heap of little symptoms that added together were something deadly. Even if we had known then I doubt much could have been done but it makes me angry that mistakes were made in her care and the people that made those mistakes have got away with it. 

When Pam passed away both H and Immie rushed to be by my side again. The other friend basically told me she was coming, despite me saying that she wasn’t needed. It was uncomfortable, for everyone as it was like there was a cuckoo in the nest.  I didn’t know why I didn’t want her there, I just knew that if I was hurting she was the last person I wanted present. I should have listened more to what I was feeling and realised that those feelings were a huge red flag. But instead I blamed myself, telling myself I was cruel and unreasonable to be feeling like that. 

Reflecting back on the situation the lesson I take away from this is don’t ignore those feelings / intuitions / gut instincts. If I hadn’t of ignored them I would have saved myself another 18 months of being treated like shit and only being visited when she thought other people may see her doing it. It was very much a keeping up appearances situation.

There are still a lot of emotions to process from the January of  that year. I haven’t stopped crying since starting to write this and the grief has come out of nowhere as I certainly wasn’t feeling sad before I started writing today.

In the July of 2018 my mum was diagnosed with ovarian cancer a very rare type at the same time I had stuff going on in my life that was extremely stressful. I was already suffering from terrible anxiety and depression after losing by now 5 people from my life and one dog ( in the February I lost a school friend who I had known from the age of 11 and we used to have regular chats on social media, just last night I thought I must ask Jon what planet I can see in the nights sky currently, as Jon had bought himself a telescope not long before he passed – totally unexpectedly and I had to remind myself that he isn’t here). I struggled to get up and out of bed as the stress was doing a real number on my chronic health conditions. I was passing out frequently and had issues with ptosis. The heat of the summer didn’t help either.

My mum then had major surgery in the August, in the September we had good news that although what had been removed was cancer, it was tiny, the size of a pin head and very unlikely to return. She is currently in remission, no one is cancer free until they have been 5 years clear. She has regular checks at the hospital and will do for another 3 years.

I finally thought that we may get some peace, after all what the hell could happen to us next? Surely the universe was done toying with us now? But no, 2018 was going to end badly and 2019 wasn’t going to start any better. On 29th December 2018 we lost our beloved boy Frankie aged 12 ( a Weimaraner) and his Mum Mollie (Weimaraner) followed him over Rainbow Bridge exactly a week later on January 5th 2019 aged 14. Both had incredibly long lives for the size of dog they were but at the time it felt like my world had imploded. I had spent every day with my dogs since 1st June 2008 ( except for hospital stays ) They were a huge part of my life and most of the time the only company I had except Jay.  I didn’t know that I could be in such emotional and physical pain and yet still wake up day after day. I thought Mr Myasthenia Kid was going to drop dead from a broken heart he looked so fragile and  broken. Even with Dembe our Labrador puppy coming into our lives on January 11th 2019, we were struggling.

This was where I noticed this friends  persons absence even more, no messages checking on how I was doing. No card, no flowers, no visit. Yet again H and Immie were there by my side, along with Paul, Pam’s partner. I will be forever touched by Paul coming over on the Sunday after Frankie passed and then coming over again the following weekend when Mollie passed. He sat and shed tears with us and told us not to worry that Pam would be looking after them until we all met up again.

 I had cards and flowers from friends and cyber friends and yet no call to check how we were, beyond the initial messages of me telling you what had happened. That is when the penny finally dropped, that when I needed you, you disappeared as you had done so many times before, unless there was an opportunity for you to be seen as a “good” person. There were so many people I only knew on Facebook who came to visit to check that we were ok or who messaged me out of the blue. I have never felt love like it, so many people hugging us, looking out for us, physically being present. 

When Dembe arrived oh my goodness, so many visits. I have never known a puppy get so many toys and presents. I had baby gates offered within minutes of me asking on Facebook if I could borrow some, the same with crates etc. Nothing was too much trouble for people. It was overwhelming and it was something I have never experienced before and I am so touched by all those people. However it made this persons lack of action / concern even more painfully obvious. That hurt, even with all the pain I was in already the fact that we could all be so easily forgotten was another huge red flag.

Initially I made excuses,  maybe I hadn’t said I was struggling? Maybe you didn’t realise I was grieving? Maybe you didn’t understand the depth of my grief? But even to the village idiot it would have been glaringly obvious. Contact over the year became less and less. It felt more and more like it was one way traffic which indeed it was. I was lucky when I messaged you if I got more than a couple of sentences out of you. Again I made excuses, you were busy with your new life now. You certainly made me feel like I was interrupting you living your best life. When it got to 4 months since I had last spent any time with you and even longer since we had spent any time alone, the decision was made. I had waited a month at that point for a message to be answered. I snapped. I was faced with the prospect of you turning up on my birthday and I knew I couldn’t pretend for 5 minutes let alone several hours that everything was ok and that I was grateful for the few crumbs of attention you had thrown my way.

You would have never put up with being treated like that by anyone, yet I was just supposed to accept this? The last 2 years had passed in a haze of grief but I was starting to feel stronger. I knew that your behaviour  was now emotionally damaging to me. I couldn’t move forward if I was going to continually wound myself, wondering what I had done wrong, why I wasn’t good enough or why you felt you could take advantage of my good nature. So I ripped the band aid off and called time, reasonably amicably. I had been hesitant about hurting you when it was clear from your actions you had no concern about hurting me.

I suppose I am reflecting on all this as that is what the new year does. December and January are full of anniversaries of people and pets passing they are hard months. It’s only now on 22nd January that I feel like the weight has been lifted . That I realise that the last few years I have been operating / functioning with a low level depression going on in the background. That the anxiety has lessened enough for me to see things clearly.

 You had changed or maybe the real you had come to the surface? Perhaps I chose not to see the real you or the nasty comments you made on a regularly basis. I put those down to you being verbally clumsy despite the fact you claim to be a writer. I realised I had put up with far more than I had ever credited myself with. I was right to call time and that belief is unshakeable now. I’m not the only one that has noticed that you have changed, grown colder and more bitter than you have ever been. I feel sorry for you as your world is shrinking and you are so full of yourself you can’t see it. One day you will come crashing down to earth with a bump and you will be all alone. Maybe you want it that way, so you can perpetually be the victim?

I reflect back and realise I should have found the strength earlier. That I should have seen the pattern that I could never depend on you. That you liked to take and use, yet giving absolutely nothing in return.  You may think you have everybody fooled but truthfully more and more of us are seeing through you. I hope you find some peace because only someone who is utterly miserable with their own life finds joy in hurting others.