I hate 2020

I hate 2020 with a passion not just for Covid-19 and not being able to see anyone but I also hate it because it has been a year of non stop health problems. It is driving me insane and I am starting to feel that “normal people” / “well people” or even people that don’t know me that well are thinking that I am either a) exaggerating the impact on me or b) I’m attention seeking. I rarely say much on social media about my health due to this. I am probably more honest on Instagram than I am anywhere. But a few times i have mentioned health issues on my own account on Facebook and now I am left doubting myself, worrying that people will think awful things about me. Believe me if I wanted attention there are a million and one other ways I could get it, being sick wouldn’t be the one I would use!

So this year I am struggling with Migraines, Menopause ( I am just 4 months away from officially being in it although technically I could have been in it at any point in the last 5 years, with the pill stopping my period I can only properly count from last December), bowel adhesion’s, ptosis and now my absolute favourite my CSF leak is back. I’ve had two good, well reasonable years with minimal symptoms. My symptoms when they have shown up have been in the evening with a dull headache and light sensitivity. Suddenly out of the blue last Thursday, my head started hurting and when you have had a spinal fluid leak you know that headache there is no confusion, the pain is like nothing else.

To describe a CSF leak headache is difficult, purely because there is really nothing else in the world that feels like it other than a post lumbar puncture headache or meningitis. I am extremely lucky at the moment that it is mild, strong enough to have me lying flat but not hugging the toilet bowl waiting for death. I was on my embroidery machine when I lent forward as I moved back my brain felt like it had been slammed between two bricks . Then my eyes were struggling to cope with the LED lights on the machine. I finished up as quickly as I could and then lay down on the sofa. Slowly over the space of an hour the pain eased. Although that was a good thing, it also chilled me to the bone as only a CSF leak headache eases so quickly on lying down. So my worst fears had been confirmed.

When Jay got home from work I spoke to him about it. He replied with “well don’t panic just yet you get days where it plays up more than ever”. Whilst he was right , this was different, this was stronger than it has been before. I could hardly blame him for trying to be optimistic maybe I would have been had I not already suffered two migraines that week and forgotten to write a blog post. It hadn’t been a good week and now it was getting worse. I replied that yes he was probably right and maybe a good nights sleep would help. I really hoped that it would be but I knew in my heart that it wouldn’t.

On waking up on Friday morning, I didn’t get the electric shock like feeling like I would back in 2016 when it was at it worst. I managed several hours upright before the pain started. I am afraid I pushed it and stayed up longer than I should have done. I did exactly the same on Saturday, staying upright and not resting like I should have done. I don’t know why I did it. Probably I was in denial and I was determined I wasn’t going to let a “little” thing like a leak get the better of me. There were things I wanted to do, I refused to go back to the dark place I was in, during 2016. 

However health problems don’t work that way, when things are bad you can’t pretend they aren’t happening. There is no distracting yourself from the pain when you have a CSF leak as the longer you try to ignore it the worse it gets and it wont stop until you lie down. If you push it too far eve lying down won’t stop it. From Friday I had increased my salt intake upping my salt tablets back to 10 a day, I had also increased my caffeine intake. Both caffeine and salt increase CSF production.

With the Menopause involved this time increasing caffeine has the added bonus of triggering hot flushes. The more caffeine I consume the worse the hot flushes are getting. Which is just fucking fantastic as caffeine is the only thing that helps quite quickly. So I spend the whole time stripping off due to getting overheated and then no sooner has the flush started I am then freezing cold. Hormones have a lot to answer for.

By Sunday I had completely blown it, my head felt like it was in a vice my eyeballs felt like they had been set on fire every time I looked at my phone, used my laptop or watched the TV. I ended up spending all day lying down either in bed or on the sofa. But as like in 2016 and 2018 ( my first re-occurrence of the leak), my back due to EDS wouldn’t let me do more than 12 hours flat. I felt so down about the pain being so bad and I really felt like maybe I had been an idiot fighting against it for three days . 

Thankfully 24 hours of lying flat has got it to a better place but I am still having to lie down much more than I want to. I managed 4 hours upright on Monday and 3 hours on Tuesday before lying down.  I was much more careful on Tuesday ( today) as dog training is re-starting . With it being held in the evening which is my worst time for the head pain, I am having to rest a lot to ensure that I don’t end up having to battle through the pain whilst there. 

To add a little variety into the mix at 6.50am I woke up in agony with bowel adhesion pain. I keep getting bouts of it out of no where. I ended up having to wake Jay up so he could get me a drink and a hot water bottle as I couldn’t move without making the pain worse. I took some Buscopan, Oramorph and thought there would be no way I would get back to sleep and then the next thing I knew it was 9am and Dembe was snuggled up beside me. I can’t work out what the hell is going on with this year. It is exhausting me with all the plot twists. If my life was a TV drama most people would be complaining it was unbelievable, no one is that unlucky….I’ve also lost my hospital consultant as the health authority he works for has decided that he is not allowed to see patients outside his catchment area. The hospital I used to go to before him, has no PoTs clinic at all as the consultant has retired. So basically if you are outside Plymouth you have been thrown ti the wolves.

But apparently my health needs no consultant input, as I am such an easy patient to manage! I hate 2020!

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.