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Back from my blogging break

/ RachelMorrisMcGeethemyastheniakid / 2 Comments

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

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

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