21st Wedding Anniversary

As Mr Myasthenia Kid is on holiday this week, I have decided to write the blog post early and share some never before seen photos from when we got married over 21 years ago now.

We got married in Sri Lanka, I had never wanted to get married abroad but sadly the wedding I wanted ( small no more than 50 people, registry office, small, intimate reception back at my family home ) was declined by my family. They however did give the very wedding I had wanted to my sibling 7 years later. Doing all the things that they point blank refused to do with me, with her. They must have thought I was brain dead or stupid because I never gave them any sort of reaction. But it hurt me deeply and is one of the countless reasons why I have had to cut them out of my life. There is only so many times you can be abused by the people who are supposed to love you, until you eventually walk away.

Anyway we had a spectacular holiday and wedding in Sri Lanka. If you have never been I can highly recommend it. The hotel that we stayed at is still there just under a different name 

The screen shots are from Saga Holidays which is the company I found that is using this hotel. When we went to Sri Lanka we went with Kuoni who no longer use this hotel sadly. Having had a look at the photo's it has had a massive re-model and looks amazing.

It was Mr Myasthenia Kid and mine first holiday abroad together, it was the first time I had been on a big aeroplane. It was also the first time I had been abroad without my family. It was incredibly daunting but we made lots of acquaintances and we are still friends with the people we asked to be our witnesses at our wedding.

So here are some photos from our wedding and the holiday. It feels like a life time ago we were 26 years old and look like babies! It was also back in the days where I won't say I was well but I could function well enough to work and have holidays abroad. This was also the holiday that the palm reader told me that my life would change dramatically when I was 30. At the time I laughed it off and he was 3 years out but bugger me did he see something?

After the wedding ceremony making our way back to the hotel on the back of an Elephant

Watching the local dancers after the wedding ceremony

Posing for photographs as the register is completed.

Making our way to the part of the hotel gardens where the ceremony will be held.

Waiting for us to start the walk to where the ceremony was going to be held.

Just after we were declared man and wife

Our first proper photo after we had got married.

Back at our hotel room after the ceremony

On a day trip to the Portugese Fort at Galle Sri Lanka

Mr Myasthenia Kid enjoying the hotels pool.

Both the above photos were taken at the Sea Turtle Conservation place just down the road from our hotel.

I hope you have enjoyed the photos as much as we have enjoyed our little trip down memory lane.

Campaign update - Success

As I wrote last week's blog Success, I was aware of another success that I had obtained which was keeping the General Medicine and Autonomic Clinic at Derriford Hospital Plymouth open for at least another year and managing to keep Dr Fulton on n his position to run it. Obviously the success is not mine alone, many people were necessary to get us to this place, the members of the campaign group who were willing for their stories to be shared in print and on the television. Members writing to their MP's ( members of Parliament ) to force action, plus a widespread email campaign to many people involved in all aspects of healthcare.

As part of the campaign one member managed to get Baroness Blackwood to raise a question in The House of Lords ( Parliaments upper chamber ). The Baroness also suffer's from EDS and PoTS so knows how important it is for sufferers to have access to proper healthcare and the provision of clinics in the UK is woefully inadequate especially in the devolved nations, Wales, Scotland and Northern Ireland. This was an incredible achievement in itself to raise the campaign profile and get it mentioned for prosperity in Hansard ( the document that records all questions and answers in both houses).

We had some excellent coverage in Plymouths newspaper and their online presence. We had two journalists join the group, whilst the BBC's coverage was poor with incorrect figures being presented as fact, they claimed a mere 200 patients would be without care when the actual figure for those in Derrifords catchment area was 1000-1500 and that was without all those who were dropped from Dr Fulton's list in June 2020 who were not in the hospitals catchment area and have been left without a consultant. You can read  first article here. The second article when we knew the clinic had been saved for at least 12 months and Dr Fulton is taking a much needed break of two months, can be read here. The journalist Molly has been incredibly supportive of our campaign and has produced two excellent pieces that have held Derriford Hospital to account. Thank you to Rebecca for sharing her story and explaining why Dr Fulton is so important.

I am amazed that we have achieved all we have in the short space of time since the 26th March when I asked the question at the hospital trusts board meeting, to starting the group and producing a letter to be sent out to various different groups and people to publicise our campaign. Thanks to Carol who managed to wrangle my 6 page goodness knows how many words into a succinct 3 page punchy letter that was hard to ignore. It is a real shame despite contacting my own MP by post, by recorded delivery and by multiple emails he failed to respond or provide any help at all to our campaign. Yet there were Plymouth and surrounding area MP's who were more than happy to roll up their sleeves and fight for their constituents and this wasn't just based on political parties, we got cross party support. Which shows how effective a campaign can be if you can get people in power interested in it.

Sadly I am aware that as Dr Fulton is on a fixed term contract and this next year marks one commissioning cycle we may still very well be in the same position next year especially if long Covid sufferers have been forgotten. People with Long Covid seem to develop Dysautonomia more specifically PoTS. Having that to use as part of the campaign made it very relevant to the media and it also gave us the advantage with Derriford as closing the clinic would in effect mean they were withdrawing care from an emerging patient group.

The group will be staying on Facebook as long as it is needed, plus now it has turned into quite an effective local group for PoTS patients, which is another thing to be proud of.

At the moment I am still left without a hospital consultant, there is no one based at the largest hospital near me and Dr Fulton was my consultant until June 2020. He is hopeful that he will be able to treat patients who are out of area at some point in the future and I am keeping everything crossed for that. The main aim of the campaign has been achieved for the moment.

I can't lie it has been pretty exhausting organising a campaign in the midst of a significant bereavement for my husband and his family. There have been days when it has felt like my world was imploding, where I was so exhausted that I couldn't continue and then I would get a message out of the blue from a member of the campaign group thanking me for everything I had done and that gave me the strength to continue. I am happy we have got as far as we have in the space of a few months and that I now don't have to be continually thinking about our next move as a campaign.

Master manipulators

When people think of manipulative relationships they often think about the victims of domestic violence and the coercive behaviour that can exist within them. However it isn't just domestic violence victims that can fall prey to this kind of behaviour. Many do not realise that these kind of relationships can exist within families, friendship groups or in the work place. Often it is not until the person has disentangled themselves from the manipulator that they realise the psychological abuse that they have been subjected to.

When you are chronically sick it is all too easy to become the victim of a master manipulator. These are people that like to exert unprecedented control over your life under the guise that they care or are caring for you. Master manipulators can be family members, friends or carers and once in your life can be very difficult to get rid of.

A few years ago I fell under the spell of a master manipulator. It's embarrassing to admit that I fell prey to this woman's evil schemes but now looking back I can see that I was particularly vulnerable. I had lost a lot of self confidence with no longer working, I was fighting the medical profession for a diagnosis and I was being treated badly by another friend who had become bored with my perpetual state of ill health. I had also been subjected to this kind of behaviour by other individuals in my life for a very long time .I was the perfect victim and she seemed initially like the perfect friend, too perfect. 

Manipulators play the long game, sometimes their plans are literally years in the making. Initially they seem absolutely perfect it is only over time that their agenda becomes clear, to dominate and use the person to achieve their own goals. At the start of the relationship the manipulator bides their time assessing their victims vulnerabilities. Storing every piece of information away to be used at a later date when they wish to start dominating the victim. They never expose their game plan in the beginning as obviously if a potential victim becomes suspicious of their motives the ruse would no longer be able to continue. This is the exact pattern of events that occurred with my friend Bertha* (* names changed to avoid legal action, not to protect the innocent).

Bertha came into my life like a breath of fresh air, I had known her in my previous life and had found her pleasant enough. It was quite a surprise when she messaged me out of the blue and said that she and a mutual friend would like to come and visit me. As social contact at this point was quite rare other than the two friends who had stuck by me, I was flattered that they would want to come over. My first mistake was made I was too grateful for her visit. The friend that accompanied her I never heard from again! I imagine that Bertha had realised that I was socially isolated and provided good victim material.

Initially Bertha was like any other normal human being. She had my sole undivided attention as she wasn't working and would come over and see my several times a week. Slowly over time I began to notice small changes, where once helping me and hubby out on the odd occasion, mainly dog care so I could attend appointments, she started to arrive late so that I would only make the appointment by the skin of my teeth or arrive late. Once I asked her to take me to a medical appointment as without her help I wouldn't be able to attend. She seemed delighted to be asked, which to be honest at the time seemed a little odd due to the fact she had let us down at the last minute several times previously when we asked for her help. Her mood changed drastically when I told her I did not want her going into the consultation room. My health appointments are private, I needed to discuss some ongoing issues with my consultant safe in the knowledge I had complete confidentiality, as any patient would. 

On the drive to the hospital she went on and on at me trying to wear me down. She didn't mind coming in with me, she had driven me there surely she should get to come in? Why was I being so secretive did I have something to hide? We share everything why won't you share this with me? The 30 minute drive felt like a lifetime. When you don't allow a master manipulator the thing that they desire you are faced with a barrage of either abuse of emotional blackmail. Even whilst we sat in the waiting room she continued her assault. When she wheeled me into the consultation room she made a move to sit behind me. I was adamant however that she wasn't going to be privy to the conversation and politely asked her to "close the door on her way out." She let out a huge sigh and left the room.

Having her drive me to the hospital and take me to the appointment was one of the weirdest things I have ever gone through. Looking back now I can see it was just a means of control, she felt her reward for doing me a good turn should be hearing confidential medical information pertaining to me. When she wasn't given her reward she subjected me to emotional blackmail. I was left feeling like a bad person for standing up to her, yet hers was the behaviour that was totally unacceptable. The drive home was mainly conducted in silence, the silence was only punctuated with her sighing. I kept my mouth shut and pretended to nod off. I wanted to use the excuse that I was tired and needed to have a lie down to prevent her demanding to come into the house for a cup of tea. Her behaviour that day had made me feel uncomfortable at the time I couldn't put my finger on it. If I thought that was strange things would eventually take a weirder turn.

In time I noticed that things were very one sided on the conversation front. She would ask me a question and then proceed to turn the conversation back to her favourite subject, herself. I felt like I had become her counsellor and joked about it. I felt sorry for her that she seemed to have so many problems in her life. Many times she complained about the fact people she was friends with her suddenly dropped her with no explanation. If it had been one friend I could understand it but it wasn't over time it appeared to be every friend she ever made had suddenly dropped her and completely cut her out of their lives. 

A few years into our friendship I made a new friend. She came around every Thursday and stayed for a few hours. I enjoyed her company we had quite a few things in common. There was no pressure in this relationship it was natural and easy going. This new friendship highlighted the unease and dread I felt every time Bertha said she was coming around. Unless you suffer from an anxiety disorder the thought of a friend coming over to visit you should fill you with happiness. My feelings were the exact opposite. This was what I would come to realise a RED FLAG and I should have paid more attention to this and the many others in my life. Having panic attacks before people visit you or when their number flashes up on your phone isn't normal. If someone is inducing those kind of emotions then you need to get the hell away from them.

Initially Bertha made out she was really happy for me to have a new friend. She started buying me small gifts to show me how much she appreciated our friendship. She decided that she was going to start hugging me more or sitting next to me, rather than how we usually sat sprawled out over the two sofas. As my new friendship flourished, Bertha started to become more critical. She was never critical of me directly but critical of my house, claiming things were broken when they weren't and then my dogs when she got no reaction from me regarding her other critical comments. Out of the blue she told me Frankie had bitten her hand. I asked her to show me where he had bitten her, it was important because as much as I love my dogs if they were ever to bite someone and injure them, they would have to be put to sleep. When she showed me her hand there was no mark on it. However her complaints of being bitten now happened every time she came to the house, yet no skin was broken, there were no teeth marks and no blood was spilled. It started to really irritate me but I let it go as I felt sorry for her. 

As her attempts to criticise me failed to provoke a response she tried a different approach. She had always been bad with time keeping and responding to text messages taking 12 hours to 3 weeks to answer a message. I really dislike lateness and people failing to respond to texts in a timely manner. Obviously there are times when you can't respond to a text message when you are working or driving for example. She had heard me complain about these bad habits previously so started to use this as her form of control. Now on a regular basis she would turn up 2 hours later than the arranged time of our meet up. She would not respond to texts blaming her phone signal. Initially I believed her over the phone signal but seeing how much she was on it I couldn't understand why she was taking up this technical fault with her service provider.

About this time she was beginning to get caught out in her own lies. We had been friends for about 4 years and she clearly couldn't remember the lies she had told. When we first met she told me she was on the waiting list for two operations yet 4 years later she was still waiting. I know the NHS is slow but it isn't that slow. When I questioned her about it she claimed she had never been put on the waiting list. She had also lied about various medical conditions. When challenged she would claim that I was confused and that she had never said that. Her stories were beginning to unravel, I let her think that I believed this explanation and then started to deliberately ask her questions about other things she had told me over the course of the four years. I have to admit I got some sort of perverse enjoyment from it, probably because I felt I was playing her at her own game for the first time we were becoming equals.

As her lies were starting to catch her out and she knew that I was beginning to realise that she wasn't the friend I had initially thought she was, she started a new attack. My husband has two days off per week and these are the days on which we spend time together. I keep these days clear of friends coming over as I want to spend the time with the man I married. All my friends respect this, obviously if there was some kind of emergency or it was the only day that they were free then I will spend time with them. However I feel it is important that my friendships are not to the detriment of my relationship with my husband. As Bertha knew this she started turning up on hubby's days off claiming that it was the only time she was free. If I said it wasn't convenient I was met with "I haven't seen you in ages", "I will just come over for an hour or so". I felt due to everything that she had done for me and the fact that she came to visit me when others didn't that I owed her and I never felt strong enough to give a flat out no. I have terrible problems saying no to anyone that I care about.

My husband always tried to make himself scarce when Bertha came over. He didn't actually like her very much and she had started flirting with him. It made him uncomfortable and embarrassed for her. When it first started he had laughed it off politely and decided not to tell me. Unfortunately she wouldn't take no for an answer and her flirting lost its subtlety and became an all out attack. It was no longer taking place when I was out of the room but in front of me. At one point she stripped off down to her bra, when Mr Myasthenia Kid was in the room on the pretext she wanted to show me her new bra. As she was probably a size 30 (UK women's size at this point), it wasn't pretty. I have lots of female friends. I have never stripped off in front of any of them to show them a new bra.

I knew that the friendship was coming to an end, Bertha had pushed me to my absolute limit. The thought of her visiting me made me anxious, she made my husband and I feel uncomfortable in our own home and she was persisting with the ridiculous lie that Frankie was biting her, in the full knowledge that his life was at stake when she said that. She was becoming dangerous and it had the feel of single white female about it. I talked it over with my other friends, who had already made it clear that they thought she was odd and possessive. My problem is I worry too much about hurting other people. It seems the older I get the more I worry. I never seem to take into account the hurt they have caused me and by continuing to have them in my life would cause me more pain. That is the master manipulators spell and I have fallen under it too many times.

The problem is having been exposed to these kinds of relationships from a young age I simply didn't realise that no matter who the person is in your life, you should never feel emotionally blackmailed by them, subjected to the silent treatment by them as punishment for not doing what they want you to do. You should never feel anxious at the prospect of dealing with them. You should never feel that because of who they are you should endure a relationship where you are an after thought and are quite often made the scapegoat when things go wrong in their lives. That's not love, not family or friendship operate.

The opportunity arose to do the dirty and end the friendship. I had arranged for her to come over to the house at 13.30pm. As on numerous occasions she had arrived more than two hours late, I had text her at 11:30pm to check if she was still coming over, I wasn't very well and if she wasn't coming I would be going back to bed. This had no response, so I messaged her via social media at 12:30pm, again no response. The prearranged time for our meet up came and went. I eventually heard from her at 14:30pm via text telling me that she had just woken up and could she come over at 16:00. By this point I will admit I was seething but I was scared of her also. I kept my reply short and sweet and told her I was in bed and to forget about today. she immediately text me back all sweetness and light asking what was wrong. I told her that I was very disappointed in her and that I would message her in a couple of days when I had calmed down. 

I had taken back control at long last but I was shaking with fear as I pressed send. I had no idea how she would react, whether she would try and plead her case or go nuclear. She went nuclear and sent me a stream of abusive texts telling me I was an ungrateful bitch after everything she had done for me and that is the one that I can repeat. The others called me all the names under the sun. When I was faced with all this vitriol it was only then I realised that she couldn't stand the loss of control. This was the first time I had ever stood up to her and she couldn't stand it. After the 5th or 6th text I decided to block her number from my phone and then immediately block her from all my social media accounts.

For about 48 hours my anxiety hit the roof, I felt like I had been a terrible person to cut her off like this but it couldn't go on. This all happened over 7 years ago and I have had to call time on other friendships, nothing as dramatic as this and the anxiety wasn't as bad when I realised I deserved better. 

When you realise that friendship, family relationships, love are not something that operates on a transnational basis as in what you can do for them, you realise by walking away from them you lose nothing but the constant pain they cause you. You realise that normal people don't behave like this, they don't view others simply in terms as what they can do for them, they like people for being themselves. Only happiness can come from realising your worth.

Back from my blogging break

I am sure regular readers will appreciate why I had to take a break from blogging. Well I am back, my health is shit, which I fully expected with all that has gone on. Something had to give so since I last wrote I have endured a hideous kidney infection that almost saw me hospitalised, a flare up of gastritis that has stopped me sleeping as it has been so painful. Then add in vertigo and a couple of migraines that has been my last few weeks. I needed to take a breath and just focus on my boys, my little family and get through this awful time. 

I think I can speak for both me and Mr Myasthenia Kid that we have been blown away with all the cards we have received, messages etc. People contacting us to ensure that we were ok, dropping my medications around, offering to take Dembe out, getting shopping for us. We needed that help and it was very much appreciated.  Whatever they could do to help, nothing was too much trouble. 

I also want to say a huge thank you to those of you who made charitable donations to MND, on Rogers behalf that was exceptionally kind of you.

Grief is such a weird thing and what Jay and I were really shocked by has been just how very tired we are pretty much all of the time. Most days when Jay is day off work we can be looking at each other at 6pm and asking if we are going to bed. What we forget is for about 6 weeks prior to Jay losing his dad things had been pretty stressful. Whenever his mobile went at an odd hour - very early morning, late at night my heart would stop. I would dread whatever the news was that we were about to receive. We realise now how very draining the situation was, how we were constantly living on our nerves. Both of us are having issues trying to get  back to a normal state. After weeks of sleeping lightly we are both still waking at the slightest sound. I am sure given time we will start sleeping better.

At the moment we are just making our way through each day as best as possible. All I can do is be there for Mr Myasthenia Kid, take care of the small stuff so he doesn't have to worry about anything else. Both of us have developed the attention span of gnats and memory spans of a goldfish. It makes things tough and it would be quite easy to get angry about the others lack of attention but we know that the anger is also another part of the grief.

Mr Myasthenia is struggling but putting a brave face on. I know that he wants to be strong and in control but I do worry that at some point in the future this approach may bite him on the ass. He has always been one to bottle stuff up and I don't want to become a nag continually asking him how he is doing. He will speak to me when he is able.

I do understand with living away from his parents how he can insulate himself from the reality of what has occurred. He doesn't have to deal with the issue because he can pretend that it hasn't happened. He isn't confronted with the reality every day. In some ways that is good and in others I worry that it will prolong the acute stage of grief as he will keep pushing it down and not dealing with it.

He has been very keen to have some photos of him and his dad around the house. I framed the order of service from the funeral so that he has that  and I managed to find some wonderful photos of Jay and his dad at the NFL match at Wembley that watched in 2008. One of his brothers also found a really lovely one of him with Roger so I have got that in a treble aperture frame.

During the bank holiday weekend we were lucky enough to go down and visit Mr Myasthenia Kids mum. We held the meeting outside in the garden. In the sunshine it wasn't too bad and the garden is very sheltered. It was nice to be able to pay my respects in person, although a two hour visit wiped me out for the rest of the day. It has been around 6 years since I had a proper visit, although we had a flying one in December last year. Dembe certainly enjoyed the garden and being chased around by Jays brothers new puppy.

Things have been all over the place in the last 4 weeks or so. Most of the time I am struggling to remember what the day of the week is let alone anything else. I am now trying to get back into a routine so that things feel more settled. 

Having Dembe has been a godsend, he has instinctively known on the days when Jay is struggling and spent the days squidged up to his dad on the sofa and at night sleeping in his room.

Health wise I am waiting for a neurology appointment. The hospital rang a few weeks ago but I had to decline as it was the same week as the funeral. I wasn't ready for the added stress of seeing a neurologist and I didn't want Jay having any added pressure that week.

I received my second Covid vaccination on Tuesday 4th May. We are still waiting for Jay to get called for his but he has a few weeks yet before the 12 weeks is up. I am happy to report that I have had absolutely no side effects from the second vaccination. I was expecting that I may end up floored by it like I was with the first one but nothing at all. Not even a sore arm. Fingers crossed that Mr Myasthenia Kid gets called soon.

We are taking a break from Dog training for a bit as we both just don't have the mental capacity for it at the moment. We are both crawling into bed most nights just after 7pm and asleep not much later. We have also been sleeping until at least 8am when Jays shifts allow. We are just so very knackered. It has been like 100 life times has been crammed into the space of a few months and currently physically and mentally we have nothing left to give.

I will try to blog regularly again but it maybe hit and miss for a little while longer.

I am a work in progress

Today has got me in a reflective mood, 10 years ago today I met the man I will spend the rest of my life with. On Sunday we will have been a couple for 24 years, in September we will have been married 21 years.

I look back now and think how young we were when we met just 23 years old and just 26 when we married. Thinking about how much we have both grown personally and as a couple, I do occasionally think that 26 was far too young to settle down. I don't regret getting married at that age but if one of my younger friends said to me that they were going to tie the knot at that age I would be asking them if they were really sure! Despite all my reservations now, I have to admit we were engaged within a month of meeting. We both knew we had met the person we were going to marry.

Those of you who are long term readers of my blog or who know me outside the realm of cyber space will know that life has thrown its fair share of trials and tribulations at us, like it does at anyone and I am proud of the way we have pulled together. We have had people who have tried to insert themselves into our relationship, we have had people we thought were friends  attempt to split us up. 

No relationship is ever a fairy tale, there are always things that annoy you about your partner and things that annoy them about you. I do think the most important thing to remember is that you wont change your partner by being in a relationship with them. Far too many people enter into relationships and think they can mould their partner into their ideal partner. Then over time when their plan doesn't work, the quirks they thought they were going to get rid of through marriage or just being together, start to irritate them beyond belief and it can mark the beginning of the end for that relationship.

I have always been quite pragmatic about my relationship with Jay. After a series of heartbreaks as a teenager where I worked out that some of my behaviours could be seen as obsessive, needy etc I read lots of self help books. Not about "getting a man" but ones where I would identify and work on those aspects of my character that were still quite immature. I am quite proud of the fact that at the age of 19 I realised I would never be happy if I didn't feel more confident in myself. I'm not about the whole "if you don't love yourself no one else will love you bullshit". I am more about understanding why the previous relationships had failed and there was blame on both sides. I had been devastated beyond belief with two of them ending despite now looking back and realising what a lucky escape I had!

For the three years before I met Mr Myasthenia Kid I was single, not a nun I can assure you but I was single. I had learned to be secure and happy in my own company. Sure at times I was lonely, especially when I moved away from home and lived on my own in a town I didn't know with people who were strangers to me. I know at times when I closed my front door at night, I knew I wouldn't see another living soul until I was back at work the next day. This situation didn't change when Jay and I started dating as he lived an hour away from me, we saw each other on Sundays and days off. It was really good for me to have this situation as it meant that my whole world didn't revolve around him, I had to make friends and carve out a life for myself, which I did.

It was 18 months until we lived together and even then it still felt like we were in a long distance relationship as he was working twilight shifts in another town. So he would be leaving for work at 4pm and wouldn't get home until 2.30-3am. At the time and I really don't know how I did it, I would get up, have a cup of tea and a chat with him when he got home. Because otherwise we could go days without seeing each other properly. This period of around 3 years was really tough on our relationship, it was much harder than when we were in separate towns. Mr Myasthenia Kid was permanently knackered with working these shifts in a shitty location. He was too inexperienced to stand up for himself and as a consequence had to put up with some appalling employment conditions, with god awful managers.

In around 2001, we actually worked together in the same location ( and did until I was ill health retired in 2008 ). This was a good laugh, we still didn't see an awful lot of each other as we worked a lot of different shifts. It also wasn't always possible to have the same holiday as each other. The main problem I seemed to encounter was staff not understanding that we were separate employee's and disputes with either one of us, seemed to drag the other one into it no matter how hard we fought to remain independent from each other. When working in the same store we had even less time together really as usually we only had one day a week off together. We also liked the money that working Sunday overtime gave us. Due to this we would have 2 Sundays a month together and occasionally our day off in the week would coincide. 

I know some people think I am crazy when I say that ill health retirement does have it's bonuses. At the grand old age of 47 I have spent more time with my husband than many people get in a lifetime. I see him every morning, every evening and he pops home for lunch most days. I get every Sunday with him and every day off. Last year when he was shielding I had 7 weeks solid with him and yes we are both still alive! That was actually one of the longest periods of time we have ever spent together without one of us working. Our relationship has grown stronger and stronger since 2008. At the point when I was ill health retired in 2008, I really don't think it would have taken much for our relationship to have broken down irretrievably. There was nothing that either of us had done wrong, it was just the fact that we were spending so little time together and we were both taking each other for granted a little.

We have been incredibly fortunate that despite the stresses and strain that Chronic illness has thrown our way that instead of drifting apart we have become closer than ever. I know ( this feels so weird saying it) a lot of our friends think we are their relationship goal. They want to be as comfortable in their own skin as Jay and I are together. We have been lucky in the fact that not only did we fall in love but we became each others best friend. We can finish each others sentences, quite often we will suddenly start singing the same song at the same time. Quite often we will bring a subject up that the other has been mulling over but hasn't talked about with the other. At times it is incredibly spooky.

Now that all the soppy stuff is out the way, I will quite happily tell you that there are things that annoy the hell out of me about Mr Myasthenia Kid, I am sure there is stuff about me that grinds his gears. I have mentioned previously his awful habit of getting his blue hair gel in the bathroom basin, every morning and never seeing it, so I have to clear it up. Also he never puts his hair gel away once he has used it. Daily I have to put it back on his shelf in the bathroom. The fact that he is still smoking, despite telling me three years ago, when I gave up he would. I hate the smell of it. The fact I have to tell him to do stuff repeatedly and then he moans at me for nagging! Due to my misphonia, I can't abide the sound of him eating, I know that there is nothing wrong with it. I just can't stand the sound of anyone eating or nasal breathing sets my teeth on edge and make me really angry! So I am not a barrel of laughs to live with, coupled with my streak of perfectionism he has a lot to deal with!

But somehow we work. It feels effortless most of the time. Occasionally I have to step back and deal with things pragmatically, knowing that he was like this before I met him and if he hasn't changed in 24 years it ain't going to happen now. Since dealing with things realistically and sensibly instead of blowing up like I used to life is a lot less stressful. I no longer get angry at the small stuff that doesn't matter and I don't "punish" or "berate" him for being himself. I just decided "what's the point in that". I do believe with age comes wisdom, I hope I use that wisdom. I am not perfect by any means, I am a work in progress as we all are.

Misphonia

Lockdown 3.0 / Happy New Year

 I had hoped Covid-19 would be less of a thing in 2021, I knew that it would be months before we started seeing light at the end of the tunnel but thanks to the British governments catastrophic handling of the situation, things are worse than ever. Deaths are at over 1,000 a day on our small island and people are taking lockdown 3.0 less seriously than they did in March 2020. Just WTAF?

It is hard when you are home alone all day not to fall down the Covid-19 rabbit hole. I can't lie I do worry about it. Especially with the situation where London hospitals have called a major incident for days in a row now, meaning they are overwhelmed by the number of Covid patients needing treatment. They are now having to ration the care they give and assessing what "value" your life has to society. Over 70 years old with a bad case of Covid the chances of you getting off a ventilator after being intubated are slim to none. It won't be offered to you, instead you will be made comfortable and be under the Palliative care team. More than likely you won't even get to see the back of an ambulance, soon you will be "allowed" the dignity of dying at home, not remotely comfortable because there aren't the district nurses to cope with the sudden influx of patients.

And yet the Covidiots shout "It's only the Flu!" "It only kills the old and infirm". That's all well and good until you realise that you are in that category. There are actually very few people without underlying health conditions. So many people have asthma, are overweight or have autoimmune conditions that mean that they could find it harder to fight off Covid-19. I find it very upsetting when people start spouting that shit because I have a lot of underlying health conditions. I know my "value" probably wouldn't be high enough. I wonder should my life be sacrificed so you can live your's unimpeded?

I have managed to stop myself being caught like a rabbit in the headlights, watching 24 hour news channels all day every day like I did back in March 2020. I restrict myself to only watching the news in the evenings. That way for the large proportion of my day I can pretend that it is just a normal pre-covid day. Because in reality my life has changed very little with lockdown, other than I can't have the fortnightly get together's of The Stichin' Bitches, the little craft group I had set up in the weeks before the everything went to hell in a hand basket. Sadly I had just found something that gave me immense joy and it was snatched away. But it will still be there when or should I say if things get back to normal.

Routine I have found is very important, in the 13 years since I have worked. Without a routine it is very easy to slip into depressive thought patterns and feel like life has no meaning at all. By having routine, it is like having mini goals for what I want to achieve for the day. Some days I achieve everything I want and more, other days I barely move from my bed but that is ok too. Although I still need to work on feeling guilty for not using my days more productively when I need to rest or heal. I still hold my self worth to how productive I have been, our whole society is built around being a productive member of it. If you don't work you can feel that you no longer have any value. That there is nothing that you can offer society. That is a tough way of thinking to escape. I like to think I offer more than a monetary value to society, I make beautiful things, I make practical things. I am enough.

Over the last 5 months music has become very important to me. It started with listening to the radio ( I love Absolute 80's ) . It coincides with when I started taking HRT, within days of starting the low mood I had been experiencing for at least 3 years had lifted. In all that time I had only listened to music very sporadically. Now I have it on every day. I really enjoy singing along with the radio as I go about my day. I like the 80's music as I remember so much of it from growing up. I know some 90's music but I was at an age where you (can) stop listening to new bands and get very stuck in the music you like. 

I've always been a bit of a Pop Princess as I like to call it. I like all genres of music but Pop is the one I will always go to if I need a lift or need some energy. Just before Christmas as part of Jays Christmas present as he was desperate to see The Mandalorian I subscribed to Disney+. Flicking through its offerings, I saw they had the Taylor Swift Folklore The Long Pond Sessions. Now I will be honest all I had heard of Taylor Swift musically up until then was "Shake it off" and "Look what you made me do", which were ok. All I had seen in the press were negative articles about her and her love life. I didn't hold an opinion one way or another. I had  seen on Netflix that they had the Taylor Swift Documentary on it. So I thought why not, if I didn't like it I could turn it off. How wrong I was.

I actually liked Taylor Swift the person, well what she presented on the Netflix documentary. So the following night I decided to watch the Disney+ one about her album Folklore. Well I fell in love. I have been chatting to my friends about it and laughing because I am like a teenager again obsessed with this album. I play it multiple times a day and never get bored. From morning to night my internal sound track is playing it in my head. The whole album has been like a giant ear worm but one that is thoroughly enjoyable. I have watched the Disney+ documentary so many times now, poor Dembe must be totally bored by it now as that is all he hears.

Finding my way back into enjoying music again has been the combined result of having HRT and the lockdown. Without either of those it wouldn't have happened. It has been like a journey of discovery for me. A bit like when you are a teenager listening to new bands and deciding which ones you like. It has been very uplifting in a time when it would have been very easy to be overwhelmed by the news / Covid-19 / Lockdown 3.0. I have been lucky enough to be able to inadvertently get back to something I love which is music. I do believe time in lockdown can be used positively rather than sitting around doing nothing but watching the news. I know not everyone will love my taste in music and that is ok, find what you love and use it to lift you up.

It would be disingenuous of me if I said every day in the last 12 months have been filled with roses and unicorns, of course it hasn't. I got very down after the car accident as it massively impacted my ability to sew / embroider / crochet. I allowed myself to have those down days because denying it would have stored up trouble for the future. It is important to acknowledge those feelings, they are real and they are valid. The trick is to move on after 24 hours and pull yourself out of those negative thought patterns so that they don't become all consuming. It is hard at times especially when I have had to go to bed early yet again due to the crippling headache I am suffering with due to the neck injury and the muscles spasming. I still have issues every day with numbness and pins / needles in my left arm and headaches of varying ferocity. It could be a while before that goes if it ever does. So you have to just get on with it because life will still carry on around you.

I've rambled on much more than I thought I would! I am back after my Christmas and New Year break. I want to wish you a Happy New Year! Thank you for reading.

I have left you the YouTube link to Taylor Swift's Folklore Album, listen, don't listen. Just find what brings you joy and stay safe.

Birthday Week

 It has been our birthdays this week, so all my routines are out of whack! We have managed to enjoy ourselves despite the imminent lock down happening, well on the day this blog post will be published.

Mr Myasthenia Kid is on holiday this week so managing to mostly avoid the pandemonium which is his workplace at the moment whilst the panic buying has begun again. 

I am absolutely shattered after two days of celebrations, I am getting too old for this shit. It was great seeing a few people, who made our birthdays really special - hilariously Mr Myasthenia Kids mum forgot it was his birthday. She rang to speak to him and he thought she was ringing to say happy birthday!

We had some lovely gifts, lots of cards and many many wonderful messages.

I made the Happy birthday banner a while ago, I am rather pleased with it. It will be out again on 16th November when it is Dembe's 2nd birthday. How can he be two already ? It is just crazy how quickly that has gone by. His dad and I are still deciding what we will be getting him for his birthday!

Exactly a week after my birthday it will be my dad's 70th birthday, due to lock down I won't be able to spend it with him which is sad. I will speak to him on the phone and possibly video call him.

The favourite gift I got Jay and the one I nearly accidentally told him about on numerous occasions was his personalised Labrador print.

It says at the bottom Wet Kisser, Body Wagger, Toy Bringer. I wanted it to say Wet Kisser, Bed shagger, Toy bringer but decided it was too rude and could be embarrassing when we have visitors, although it is highly unlikely the vicar is likely to pop around for tea any time soon.

Anyway it is just a short post this week whilst I am recovering from our birthdays.

You don't look in pain

A week or so ago a Facebook buddy of mine posted a quote on  her news-feed and it resonated with me. I expect it resonated with a lot of people because many of the people I am friends with online are people I have made friends with through Chronic illness groups. The thing we all have in common and a lot of the time we are not believed when we say we are in pain every single day be it through Ehlers Danlos Syndrome, Fibromyalgia, Migraine, Arthritis, adhesion pain etc etc. There will be people in your own lives that you have no idea deal with pain every day all day because they have been conditioned not to speak about it or just don't want to come across like they are looking for attention or sympathy.

This was the quote my friend posted;

I have spent some time this morning trying to locate the source of the quote so I can give an attribution to the author and unfortunately I can't find it. I have read some quite interesting pieces of information from blog posts, medical sites and chronic pain forums I will post some links at the end of the post.

Many people with chronic pain are disbelieved , especially when there is no "evidence" of what is causing the pain or the images from scans or x-rays don't correspond to the level of pain people are stating they are enduring. I had the same when I was suffering from terrible pains in my knees with my right knee being the worst. I was getting sharp pain under the knee caps when going up steps and suddenly out of nowhere when standing / walking.  I was taking morphine so it was accepted by both me and my gp that it must be bad whatever it was for me to be feeling it...when the x-rays came back it showed really mild arthritis. Due to it's location I couldn't be offered an injection into the joint. It was something I would just have to put up with. He suggested some exercises to help, which mainly consisted of doing plie's. After I did one in front of him and my knee caps made a sounded like a shotgun being fired he helpfully suggested that I avoided those! I still get the pain along with lots of others courtesy of my friend EDS, Migraines, Arthritis, Bowel Adhesions, Spondylisthesis etc etc

It's not just the medical profession that have difficulty accepting that someone is in pain. So many times I have been involved in conversations where people have made judgements about others saying "well it can't be that bad they manage to do X.Y. Z." It is even sadder when it is people within the same community who know what it is like living with a chronic health condition and the pain that comes with that. Many of us do things that we enjoy as a kind of pain relief. When my Spondylisthesis shifted a few weeks ago and left me in excruciating pain, that was waking me at night, I still crocheted, used my sewing machine and my embroidery machine. I ensured I kept to strict time limits do never sitting for more than 15 minutes without moving and ensuring I had adequate pain relief onboard. If I hadn't have been able to distract myself through those activities I would have had no relief at all. Yet some may have been quick to judge saying " well it can't be that bad she is still sewing etc". I can assure you it was. There were times I would sew with tears rolling down my face, or feeling sick because the pain was so intense I was struggling to stand.

If the pain is that bad why don't you lie down?? Was something I was asked. Well I would love to lie down but my back would never put up with me taking to my bed for days at a time as much as I would love to. My back manages about 8-9 hours of being in bed and then it gets so painful and stiff that lying in bed becomes part of the problem, I am the same lying on the sofa. My back hates being immobile, everything seizes up. It was the biggest issue I had when I needed to do strict bed rest when my CSF leak was at it's worst in 2016. I just couldn't do it without being in agony but then sitting up made me feel like my head was exploding. On those days I ended up hugging the toilet bowl as the pain was making me vomit.

The quote is true people with chronic unrelenting pain do operate at levels of pain that would floor most other people. I never know what level my pain will be at from hour to hour. Today I am in a lot of pain, I have no idea why. I haven't done anything to cause that pain. My pain is in my hands...great when you are typing, my hips, lower back, knees and ankles. I have had a hot shower, hot water bottle and taken pain relief but nothing is touching it. The pain doesn't stop, it is at about a 6/10 for me. I will carry on with my day as normal being aware of that pain despite doing other things. For pain to actually stop me doing something it has to be an 8/10 or above. Last night I nearly didn't go to dog training as my bowel adhesion's started up after eating dinner. I have been having problems with my adhesion's a lot the last few weeks. I managed to get the pain under control with buscopan and a huge pint full of peppermint tea. I was lucky sometimes it refuses to settle and just gets worse and worse until I am on the verge of passing out. Then it just tails off as quickly as it started. 

Adhesion pain is one of the pains that will immediately stop me doing something. It feels like someone is attempting to remove my intestines through my belly button. It is a sharp pain the comes in waves. So the respite can be seconds or minutes before the next wave hits. Some days it starts as soon as I take my medication in the morning and everything I eat or drink that day will be followed by the pain. Other times I will be fine all day then in the evening I will end up screaming in pain due to it starting up out of nowhere. I can go months without experiencing this pain and yet at other times everything I eat and drink for weeks on end is an ordeal. I am in one of those phases at the moment. Yet if you were to look at my Myasthenia Kid page on Facebook or my personal news feed there would be no mention of it. Because although it really fucking hurts it is a pain I have lived with since I was about 5 years old. 

What really upsets me when I am struggling with adhesion pain is when people who should really know better say something like "are you sure it's not trapped wind as that can be painful"...my standard reply to that is "how many people do you know have fainted from trapped wind?" or " how many people have ended up having major surgery due to adhesion pain?" That usually shuts them up. But it is incredibly hurtful to anyone suffering pain to be so casually dismissed as having something that yes can cause pain offered up as an explanation with the implied suggestion that you are making a meal of things or are a drama queen. I do often wonder why people do that, if someone broke their leg and were in pain I wouldn't suggest they had stubbed their toe. Just because you can't see my pain or have never felt it, doesn't mean it doesn't exist.

Also two people can have the same condition, it doesn't mean their levels of pain are the same or that the condition will follow the same path. Everyone's journey is different. Some people have a high pain tolerance and what they can endure would have others out cold. I know people in the EDS community that have endured root canal treatment without any anaesthesia because it doesn't work on them. That has me sweating just thinking about it. I like to think I have a reasonably high pain threshold except when it comes to my mouth. I have gone through the removal of the side of my big toe nail without pain relief, I have had a lumbar puncture when my local anaesthetic has worn off and pretended it hadn't. I have run company inductions ( when I was working ) with adhesion pain that had me crying in the toilets every time I left the room when a video was being played. I looked fine when I was doing the induction even though I felt as if I was going to faint.

I get sick and tired with the majority of peoples idea that pain somehow shows on a persons face. I have seen summing up by judges in disability cases saying that the person is showing no signs of pain or they have been seen laughing and joking so the pain can't be that bad. Up until my pain hits a 8 you will find me cracking jokes, after that I start getting cranky and grumpy. When my mood changes with pain you know it has got bad.

We need as a society to stop judging people, stop trying to think because we have had that medical complaint that we know all about it, everyone experiences things differently. By minimising it or not believing them we take away their voice. As it is so many of us are already battling the medical profession to take our pain seriously, we don't need to be battling friends and family as well.

Even when I am in horrendous pain he makes me smile.

https://www.health.harvard.edu/blog/chronic-pain-the-invisible-disability-2017042811360

http://nationalpainreport.com/future-doctors-unprepared-manage-pain-8822008.html

Face masks

A few weeks ago I helped the local NHS hospital by altering some surgical masks for them that had come in but the elastic ear loops were too big. This led to a few of my friends asking if I would be making face masks or would I make them some face masks for them or their friends and family. I know the jury is out on the use of face masks. This post isn't about that, there are research papers that are for and against the use of face masks by the general population. I think we can all agree that "home made" face masks when worn provide protection to other people more than the wearer - which is why many countries have adopted  the wearing of face masks so that they can all protect each other from Covid-19 and other nasties.

Initially I was very much in the camp of home made masks are bad. That they provided a false sense of security and that by having poor mask etiquette that they could cause more harm than good - if someone continually touches the front of the mask when wearing it and doesn't wash their hands after they are capable of spreading their germs far and wide on every surface they touch. Since then there have been articles in The Guardian,  The New York Times that have shown even home made masks when constructed from the right materials can offer a level of protection that hadn't been anticipated. Add in a filter to those masks - made of an unwoven material or a special mask filter ( you can buy at various oulets) they can provide as much protection as the surgical masks I was altering the other day. A link to the New York Times article can be found here.  The Daily Mail did an article -here The Guardians Article can be found here. So I am now very much of the opinion that yes we should all be wearing face masks of some description when out in public to help protect each other.

So for the last 20 days when physically able I have been making masks for friends and family to wear. All I have asked for is the cost of materials, being on a tight budget I can't afford to be giving away material, elastic and pipe cleaners etc as much as I may wish too. With Mr Myasthenia kid at home, he has been able to keep Dembe entertained and do the chores I would normally push myself to do that would wipe out my energy reserves. Even with him doing that I have had a couple of days in that 3 week period where I have crashed hard just due to pushing myself too hard for too long in an effort to keep people supplied with masks and not letting anyone down. I am on an enforced break now as I have run out of elastic - I thought I had ordered enough but apparently not! I am awaiting fresh supplies. 

To be honest I am quite glad for the break, I am so tired mentally and physically it hasn't been until I have stopped that I have realised how far past my reserves I have got. I always find it amazing how knackered I can be doing nothing ( but obviously I am not doing nothing as I am taking care of myself. I just judge myself way too harshly and think I should be as active as the next person even when in reality I know that is an impossibility ). There have been evenings when I have been so tired that I am unable to form a coherent sentence or stand up straight. The rest was long over due.

For my mask pattern I used this Youtube tutorial

Mr Myasthenia Kid has been helping me with cutting, pressing , folding pipe cleaners for the nose bands, going to the post office etc All the things that can take me more time than an able bodied person and things that I can't do such as a post office run. Without his help and support I would never have been able to make the number of masks I have. 

I have been running on adrenaline for days, I knew I had. Last weekend I was supposed to be taking some time off for sewing but instead I started several other projects. Today (Tuesday  21st April ) is the first time I have sat and just done nothing. Everything is hurting and I feel zombie tired. Which is why I tend to keep pushing and pushing because I know how incapacitating the crash will be. I have always been a boom and bust merchant. Plus keeping busy stops me worrying about Covid-19 and what would happen if either of us got it. 

So due to my lack of elastic I have had to have a day off and it feels strange. I'm so tired though it was very clear that I needed it. I did manage to get Jay to help me highlight my hair as I am having real problems lifting my arms above my head. Within seconds of doing it I am getting awful pain in my shoulder joints. Normally I would battle on through but it is just too sore for that and I am having to put my arms down. He has done a good job and now my roots look far less obvious than they did previously.

I did have a lovely surprise this morning finding out that Natasha McCarty from Natasha Makes was sending me a gift after hearing about my run in with a pin cushion on Saturday!

On Saturday when I was busy making a baby bib for a friends new baby, I didn't notice that I had knocked my pin cushion onto the floor. It had gone pin head side down leaving the sharp ends pointing up but hidden by the pin cushion. I use this particular pin cushion as it has sentimental value to me. It was my late paternal grandmothers and I use a lot of her old sewing stuff on a daily basis. It was only when I got up from my sewing machine and I removed my foot from the pedal, that I placed my foot on top of the pin cushion ( I was wearing socks only) and put all my weight through that foot to stand up. To say the air was blue would be an understatement! It took me ages to get all the pins out of my foot as there were around 20 or so on the cushion. I yelped and cried, there was blood and tears. Later when I looked at my sock I realised that the blood had come right through . 3 days on and the sole of my foot is still a little sore, not something I ever want to repeat, especially as a long time ago I stood on a darning needle and had to go to the local minor injuries unit to get it removed whilst using gas and air! I will be making the pin cushion as soon as it arrives and I can't thank Natasha enough for that. 

Dembe modelling my creations from last weekend!

So for now I am putting my feet up and allowing myself to chill out for a few days!

I hope....

Well it seems we are all players in some kind of dystopian society. The police ( it has been reported) going into shops and telling the store owners what they can and can't sell. Road blocks stopping cars asking where the occupants are going. Whilst I understand some of these measures maybe necessary I do sometimes wonder if there will be long term ramifications for our civil liberties when this is all over. Possibly the free society that we have been told exists for so long, was just a fallacy. Who knows ? It is just a bloody strange time to be alive. 

I worry a lot about the adults of the future and their mental health after being exposed to these constant stress levels. No matter how good of a parent you are the kids are going to notice that things are far from normal. Exposure to high levels of the stress hormone cortisol for prolonged periods during childhood is theorised to cause damage (here) We went into this global pandemic with a vastly underfunded National Health Service, whose mental health side always played the poor relation. Now we have the very real issue that after we get through this that not only adults maybe displaying the symptoms of Post Traumatic Stress but also millions of children. All people who may be needing immediate help after this crisis is over but the help sadly won't be available to them.

My anxiety levels have been all over the place in the last week, I know I am not the only one who is struggling to deal with the current situation. Last week gin and chocolate were my drugs of choice but they left me feeling awful and rapidly gaining weight, so I have switched back to my meal replacement as I feel so much better on this and it stops the passing out after eating nonsense. Hubby is also having to battle the demon anxiety, his is related to work and the guilt of not being there. The slightest thing is setting him off so it is necessary to attempt to fill his days with as much activity as possible so he simply doesn't have the opportunity to fall down the Covid Rabbit hole. 

I was perfectly fine with the whole lock down situation as in all honesty it was no different to any other week in the past 12 years. At the moment with Mr Myasthenia Kid being home it just feels like he is on holiday other than his work phone is on and he is ringing staff to find out how they are doing whilst they are also on 12 weeks leave from work. However more than two weeks of this and it is going to get bizarre. I have grown very used to my own company over the last 12 years. I can usually accommodate the disruption to my routine when he is home, this 12 week period could be a test as I do like my routine. 

On Saturday a dear friend dropped off mine and hubby's prescription medication to us. Normally I would have thrown my arms around her and given her a hug. Instead we had to observe the whole two metre distance protocol . It was weird and unnatural ( I get that it is to stop infection, it doesn't stop it from being totally alien ). We have over the last ten years become quite a demonstrative country, friends greet each other with a hug, peck on the cheek. So to suddenly go back to not greeting my nearest and dearest this way, well it really upset me. As soon as I closed the front door I started crying and I pretty much wept on and off all day long. Which was a bit of a nightmare as I was trying to do some sewing. It was the first time in a long time that I had to acknowledge the isolation. I know I am incredibly lucky, I have someone at home with me, so I have human contact. There will be many people out there, particularly elderly people or those who have been widowed with grown up families that have no one at all and it will be like that for 12 weeks ( at least ).  Countless pieces of research have concluded that loneliness is as bad for you physically as smoking 15 cigarettes a day let alone the damage it does to you mentally. For a nice easy to read article on it click here .

A lot of people are going to be experiencing something they have never done before - complete isolation. The impact on the health service after this is all over will last years and people, well those in power need to be thinking about the nations recovery, not just financial after this. Every generation will be affected, every demographic it is another ticking time bomb waiting for us on the other side of this pandemic. There will be those dealing with the loss of one or more loved ones, those who have had OCD triggered ( obsessive compulsive disorder ) by the excessive hand washing we are all undertaking to prevent contracting or spreading this virus. Also what about the women who are due to give birth right now, will there be an increase in postpartum depression or psychosis? We already knew that the mental health resources were spread thin before this started, with a depleted exhausted work force how on earth will anybody get the help they will so desperately need when this is finally all over ( and for some their conditions will be so acute right now that they need the care immediately and it won't be there ).

I also worry for the key workers who are holding this country together right now. Ever increasing work loads as more and more people have to self isolate for two weeks. The abuse that some of them have suffered whilst simply trying to carry out their role to help the general public. Some of them have had to make some very painful emotional choices, not to see their children / loved ones for fear of contaminating them with this virus. When they are already experiencing probably some of the toughest working conditions they have ever endured they now have the added emotional toll of having the physical contact of the ones they love removed from them. The people at home can be the very support system that keeps people going at times like these.

I have great concerns for the doctors, nurses, health care assistants, home carers who may have patients that pass away from Covid-19. I can't imagine the toll that is being taken on those who are dealing with rooms full of Covid-19 sufferers, that will or probably have already decided who will and who won't be placed on a ventilator. Can you even begin to imagine the damage that must do to a person? Having to tell that persons loved ones that the patient won't survive, isn't a suitable candidate for life support. People may think they must become immune to it over time but I don't think they ever truly do and this maybe the tipping point for many in this field of medicine that leads them to walk away from it once this crisis is over. It maybe the same for many occupations, that people realise the emotional toll that the job has taken on them is just too high.

Many of my friends still work in retail, once a job considered by many to be low skilled is now feeding the nation. However after 2 weeks worth of abuse by the general public many are now refusing to do more than their base hours, no longer willing to do over time and be exposed to the abuse both physical and verbal for just over the minimum wage. Who can blame them? Many people are making the decision to place health particularly mental health over wealth. They can no longer put up with their treatment at the hands of others, when they are providing a vital service. Without anyone in food retail from the checkout operator, to the store cleaner, to the HGV driver to the factory worker, to the packet printer, to the farmer and many others I have failed to mention, you would've have gone hungry. And yet some people are still treating them like they are shit on their shoes well shame on you.

I am hopeful for great social change once this is all over. I am hoping those previously thought of as low skilled get the recognition they should by being paid a proper wage. That the homeless will remain housed and not turfed out once the crisis is resolved.

I hope that we come out of this accepting that we all will be carrying mental scars no matter how tough we are and that there will be the help available to all that need it, not just those that ask for it.

I hope that we all start to appreciate each other more and realise everyone has their part to play if we want to live in a fair and just society. That it is no longer someone else's problem.

I hope most sincerely that we never go back to once what was normal, that we strive to make a difference every day.