The last post of 2018

As we are now rapidly approaching Christmas, just a week away as of writing this post, I have decided that this will be the last post of 2018. A year that I will be particularly happy to get rid of for reasons too numerous to mention. I will be giving myself a little break from blogging and will be back on 10th January 2019 which seems a date massively in the distance but in reality is a mere three weeks from the date this blog post is published.


 I haven't taken this long of a break for many years but some times we all just need to be in the moment and self-care. I always get incredibly stressed around Christmas, it's not something I massively enjoy as it's built up to be this wonderful, magical thing but I actually find it quite a lonely time. Hubby gets very limited time off work and he's back in the blink of an eye. This may sound a bit baa humbug to some but I am guessing I am not alone in feeling this way about Christmas, as in it promises much and delivers little.

I always get incredibly wound up in the run up to Christmas, I worry things won't be perfect, all the glossy magazines and TV programmes sell the belief that if you aren't making absolutely everything from scratch, food, decorations, wreaths etc then you are an abject failure. In the early years of being sick I would work incredibly hard trying to ensure Christmas was picture perfect. I would make the whole Christmas dinner from scratch, I would be utterly miserable and stressed out by the sheer enormity of the task and most of the time I was only cooking for two. When I am stressed I get snappy so the knock on effect was that hubby and I would spend the whole of the Christmas dinner cooking time sniping at each other and taking offence at every word uttered. It was no fun at all. The food was absolutely delicious but was it worth the sleepless nights ( I kid you not ) and the marital discord, no way.

When in 2016 Christmas was approaching and I was suffering from a CSF leak, the stress was even worse. There was no way I could spend 2 to 3 hours upright in the heat of the kitchen without it destroying the rest of the day. The CSf leak meant being upright induced the most horrific head pain that no pain relief would touch. I came to the conclusion that for once Christmas dinner cooked from scratch could take a running jump. There was no way I was destroying my health for the rest of the day for a meal that would take 20 - 30 minutes to consume. It didn't make any sense to me at all. So hubby bought as much as he could pre-prepared  / frozen and we had just the gravy to make along with the carrots and sprouts. Ok it was never going to win a Michelin star but it was passable and when you are chronically sick or in chronic pain that is all you should be aiming for. 

Perfection is a word that is bandied around by all of us but in reality perfection doesn't exist and we shouldn't all be wearing ourselves out trying to achieve a marketing concept. If your roast potatoes aren't cooked in duck / goose fat who gives a shit? If your Yorkshire puddings are Aunt Bessie's who cares? Who knows unless you tell them and my neighbours certainly won't be rooting around in my bin trying to discover if I was the perfect hostess or not. The pressure we put upon ourselves to have the perfect Instagrammable Christmas is just silly!

Now the above probably makes me sound like I have my shit together and that I don't get stressed about Christmas. Nothing could be further from the truth. This year I have just found something else to worry about. Believe me if there is something I can find to wind myself up over I will and do. I just don't get stressed about Christmas Dinner - well I might a little bit as I have to work out the timings for everything and supervise Mr Myasthenia Kid in the kitchen whilst falling over two dogs who think any food in the kitchen is fair game and only being cooked for their enjoyment.

This year I have gone down a wildly different route for Christmas presents, as in due to my new-found skills I have made the majority of them for family and friends. Initially I felt very smug about the fact that I could utilise my skills this way and wrote out lists of gift ideas and set about working my way through making them. It has proved stressful and quite difficult at times as I have battled this trapped nerve in my neck. The issue this year has been that due to the fact I have made all the gifts or the majority of them, I have panicked that people will think I am cheap. 

I have found since I started that people fall into two categories, category one - handmaid equals cheap, therefore you shouldn't charge a lot of money for any item you make. Basically they want an artisan look for pence rather than the actual cost of producing an item or category two - a basic understanding or full understanding of the price of materials, skills involved and appreciation at the fact you have spent your spare time making them a unique and individual item. It surprises me how many people fall into the first category, when you buy cheap you are exploiting another human being. Maybe that human being lives on the other-side of the world and works for peanuts so that you can have your item at a rock bottom price? If you can live with that, that's fine.

Because this is the first time for me making gifts I don't know what category a lot of my friends and family fall into. I don't know if they will be making snide comments about me being a cheap-skate or if they will like the items I have made. Due to this I have probably over gifted as I don't want them feeling short-changed. In effect instead of spending an online choosing gifts that they may not want or need or maybe thrown away, I have managed to create days of work for myself ensuring everyone feels special due to the gifts I have made them.

So yet again as you see I have managed to find something to worry about. Thankfully it is just worry and not full-blown anxiety. My anxiety levels have dropped considerably from where they have been the rest of the year, this is my normal level of worry. And to be honest if I had bought gifts I would still be worried about what people thought of them and me . So nothing has changed really.

Thank you to everyone that has read my blog posts over the last ten years, can you believe this little blog has been going on and off for all that time? Thank you to my new readers who joined this year and have provided lovely feed back either as comments on my blog or on various social media platforms.

I'd like to wish those of you who celebrate Christmas a Merry Christmas and to everyone else  happy holidays, happy Yule etc. Just enjoy the time you get to spend with loved ones be they friends or family.

See you in 2019.

Thank you

With Jamie’s guest blog post last week In Sickness & In Health  it brought me back to thinking about a post I wrote in May 2014 and reblogged in March 2015 called Weathering The Storm . It was good to see Jay’s perspective of things from the side of being a carer, husband and breadwinner because I do feel a tremendous amount of guilt about the way my illness has not only impacted my life but of his also.

It was lovely getting feedback from people who see us in the real world and from those who only know us through the internet. Not that I want or need outside validation to know that I have a wonderful relationship with my husband, as quite frankly I find it incredibly hard to accept compliments or to “see” what others see in us. To find out your relationship is an inspiration to others is obviously very nice but it also feels quite strange. I have never seen either of us as any kind of role model. It is a really weird situation to explain without sounding like an ungrateful twat and that couldn’t be any further from the truth. I am truly grateful (as is Jay) for everyone who took the time to leave comments on Facebook and on the blog post. We were both very moved by the things people wrote, so we want to say thank you for that.

The thing is Jay and I don’t think we are anything special, we just work. We are very similar in our outlook and sense of humour. We both mean the world to each other. Neither can imagine life without the other, when I think of family he and the dogs are it. When something good or bad happens he is the one I want to tell first but to me that is how any relationship should be. I suppose it seems strange because I know we aren’t one of those couples that are constantly doing PDA’s (public displays of affection), we never have. We are by nature quite private people, which is hilarious when you think about it in connection with my blog. However like any blogger or anyone on social media there are things that you don’t share because you still want a level of privacy and to have something that is yours and yours alone.

I wrote a lot about the guilt I felt due to getting sick back in 2014’s Weathering The Storm, things have changed a bit, I still feel pangs of guilt but not on the level I used to. I know that I didn’t do anything to cause my predicament or to deserve getting sick. It is just one of those things that happens. I did feel very guilty last year due to the amount of stress that Jay was under due to my CSF Leak and the amount of time he had to take off work at short notice. I worry about the impact it has on his career and his standing amongst his colleagues yet they were the ones who took the time to praise him for his blog post. That meant a great deal to both of us and reassured me that at least in his work world, he isn’t thought any less of due to me.

I am lucky I have a partner who will stand by me through thick and thin. I know he loves me, he tells me everyday and I tell him the same. We had so many plans before all this happened and it’s only in the last few years we have been making plans for our future again. Until a few years ago I could see no future and no point in planning anything long-term. He has taught me that plans can always change no matter what the situation but it always important to have plans, dreams, aspirations rather than always being focused on the here and now. Even when things were really dreadful last year and I was confined to bed for much of it (due to a spontaneous CSF Leak) we would talk about going on holiday, about fundraising for a new wheelchair etc. Even if those things seemed nothing more than a flight of fancy at the time, they are what kept us both going.

I think a lot of the strength of our relationship comes from the fact we have shared hopes and dreams. We aren’t working against each other but together for common shared goals. A relationship is the biggest feat of teamwork you will ever take part in. We work together because we want to be together come what may. And whilst we have both had utterly crass and insensitive things said to us over the years, as in “leave / walk away, this isn't what you signed up for” or “If you were my wife I’d leave you”, we haven’t taken it personally. Rather we have felt a deep sympathy for the partners of those who have said those horrible things. Wondering if they knew that they were once accident or illness away from having the love of their life abandon them. It never crossed Jay’s mind to leave and if the shoe had been on the other foot, it would have never crossed mine either. When we took our vows we meant them, they weren’t said with our fingers crossed behind our backs in case anything ever changed. We aren’t like that and can’t understand people who are. I really do think those sort of people are in the minority, well I hope they are.

So from both Jay and I we just wanted to say thank you, to everyone who read the blog post and to those of you who took the time to leave a  comment. We read every single one and they all meant a great deal to us. Jay has promised that he will write another piece in the future, again the subject matter will be entirely down to him.

Thank you from us both and of course the dogs.

In Sickness & In Health

A guest blog post from my husband Jamie (aka Jay).

Jay has been saying that he would write a guest piece for around a year. Well I have finally pinned him down. The first time I read it was when he handed it to me ready to be typed up onto my blog. I won’t lie some of it moved me to tears. He is a typical bloke who quite often doesn’t say what he’s thinking or what’s worrying him. I know he loves me that much is clear but I am so proud of him for writing this piece and introducing himself to my readers. So here it is…..

Hi,

I’m Jamie. I am 43 years old and I am married to Rachel. You may be a frequent visitor to her blog and while you are all probably well aware of our dogs (as understandably so) they get more blog time than me, you may not know much about me.

I met Rachel in 1997, whilst we were both attending a management training course. I knew from the minute I met her she was going to play a massive and pivotal role in my life. We were engaged around one month after we met and I moved in with her the following year.

We were married in 2000 in Sri Lanka. An incredible setting for such an important moment in our lives. We eloped and our trip to Sri Lanka was not only our Wedding destination but the first time we had been abroad on holiday together.

Three years later we purchased our now home and lived happily ever after…….

The End.

Well not quite. You see regardless of what happened then to her health, nothing changed for me. She is still the same incredible person.

A lot of people told me to “walk away” or told me “this isn’t what you signed up for”. However what I signed up for, was to spend the rest of my life with my lover and best friend. And that is what I am doing.

Others have said to me “oh being a carer and working full-time must be so exhausting”. My answer is “No it’s not. She is there when I wake up and there when I return home from work.” During all the visits to the doctors / consultants, guess what? We are together and we talk for hours. In fact it doesn’t matter how bad things get, she’s always talking! We rarely even listen to music in the car because every journey is filled by the sound of us laughing and chatting. So don’t feel bad for me. I have the best life there is, spending so much time with my amazing wife.

Yes there are up’s and downs. Occasionally I get very stressed out because she is so unwell. Sometimes I need to take emergency time off work to look after Rachel and I have to say work have been fantastic in supporting me and looking out for my mental health.

Rachel has supported me selflessly over the years. She has supported me as I have grown as a person and as a husband. She has always been there for me, as I have been there for her.

Yes I make mistakes, I leave the toilet seat up, smear shaving phone on the mirror, leave blue hair gel in the bathroom sink and I undercooked a pizza once. I also promised to write this blog post last week when I was on holiday from work but instead found myself overtaken by the other love of my life my PS4.

Through all the bumps on the road of life, we know and understand each other better everyday. In February we celebrated 20 years together as a couple, this September we will have been married 17 years.

So that’s about it, short and sweet I know but not a downbeat, oh woe is me post. I couldn’t be happier. I do hope you’ve enjoyed my blog post and that you will continue to support my wife’s blog.

As I said in 2000, In sickness & in Health.

My Guest Blog Spot

A week or so ago I was browsing through some blogs as I tend to do once or twice a week and came across lifeinslowmotion a blog on the Wordpress blogging platform.

As I was reading the bloggers post the author asked if any of her readers wanted to contribute a post for a guest blog spot. As I have never done a guest blog spot before this immediately appealed to me. I got in contact with the blog's author and threw my hat into the ring.

The lady who runs the blog and I emailed back and forth so that I could get the word count, tone of the piece etc sorted. As you know my blog posts can be long affairs so when she set the limit at 1,000 I panicked and said I may struggle. Thankfully she upped the final count to 1,500 words and I happily came in well under that with a word count just above 1,200.

Writing a guest blog post is a nerve wracking experience which I had never truly appreciated before. Running your own blog is fun, you make all the decisions. I have never handed over editorial control to anyone and those of you who know me personally know what a complete control freak I can be about everything!

When Bee agreed to be my guest blogger a few weeks ago, I am sure I didnt understand the pressure she was under. I also felt pressure in not attempting to change what she had written beyond recognition and therefore rendering her voice mute. Each writer has their own style and flow. I felt when "tweaking" Bee's post (and it was tweaked very, very lightly) that all I should do was allow it to flow and just break up the big paragraphs into smaller ones. I have learnt the hard way and through personal experience fellow bloggers / readers do not want to be confronted with huge chunks of prose.

I have published a few paragraphs of the guest blog post which was published on Friday 8th August

"Every time you find humour in a difficult situation, you win"

I found this quote on twitter a few weeks ago and have been searching for the author of it because I think these are words to live by. I have had my dark times when my illness has made me feel very low but I have never lost my sense of humour.

I have always had a dark / dry sense of humour and since being struck down by a chronic illness in 2007, it has been this sense of humour that has got me through. Obviously with the support of friends and family.

Outsiders have always perceived me to be a negative / pessimistic person however I would call myself a realist. If I know what the worst case scenario is I can prepare myself should it come to pass. With my illness dysautonomia, (a name which covers a multitude of sins)  seeming to be progressing, affecting more parts of my autonomic nervous system, no one has raised the subject  that this may actually kill me. The truth  is no one knows how the dance (thats what I call my illness for I am forever dancing to its tune!) will pan out. So I am left wondering what happens next?

To read the rest of the post please go to Life in slow motion

Where do blog posts come from?

This post was prepared in advance due to the octreotide trial I was supposed to be having on April 8th. On Monday 7th April I received a phone call to say the trial had been cancelled for Tuesday and been moved to Monday 14th April 2014. I will of course update you with all the gory details if indeed it does take place on 14th April.

I know some people are curious as to where I get the ideas and inspirations for my blog posts. Some are interested in the process I have for blogging.The answer to where I get the blog subject from is quite diverse and sometimes strange! The process of how I get the blog post idea from my head to the page can be equally bizarre.

My blog started out as a way for me to be heard, even if no one read it in the beginning it didn't matter to me as long as I got my thoughts and feelings down on the page. I felt like all the doctors I came into contact with weren't listening, my health was bad and I was being labelled with conversion disorder yet no psychiatric help was given.

I knew that I wasn't manufacturing my condition and they weren't some vague symptoms being complained about by a stressed out thirty something  woman to gain attention. So initially my blog was about what was going on in my life at the time.

When I first became ill I became convinced that I was dying or was going to die due to the lack of help I was receiving from the medical community. In a way my blog the last statement I could make should the worst happen. It could be used as evidence against all those doctors who had told me that I wasn't ill and that the problem was all in my head. It was a scary time and some of my earlier blog posts are very angry and desperate.

To begin with I tried to keep my personal life separate from my blog to give myself some anonymity. However I found this created a disconnect between myself and what I was writing. I felt I couldn't be honest and be the passionate person I am without you the reader getting to see me, the writer of this blog. So slowly I started letting my guard down and letting the readers of my blog get to know me a bit better. You can't empathise or understand a person unless you know them.

As time went on I realised I wanted the blog to be more than just about my health. I wanted to encompass other subjects that would be of wider interest to people within the world of chronic sickness and not just those suffering with EDS, Pots and dysautonomia.

I have been blogging a lot recently as my health has been so poor that I can not do my normal activities. Sitting  (or in my case lying in bed with the computer on a lap tray) at the computer / tablet and letting off some steam and thinking about writing has helped me get through this difficult period.

So I better answer the question as to where I get the ideas for my blog posts.

Some come from my life as in what new medical struggle I maybe facing at that time, some come from conversations with friends ( my blog post on friends and chronic illness came from a friend and two different peoples stories on two different Facebook groups which were literally posted within hours of each other) , others come from suggestions that my mum makes ( usually she asks me something and as I am explaining it to her I think wow that would make a great post!) Some come from reading other peoples blogs, reading their posts sparks an idea in my head for a subject. Some come from my memories recent or long ago. And weirdest of all some come to me in dreams. It seems currently after an 18 month hiatus my brain is back in blogging mode.

I really need to start carrying a notebook with me wherever I go - which is mainly around the house. The number of times I will be having a conversation with my husband and then suddenly think "oh that would be a great post" and then five minutes later realise I've forgotten it is getting frustrating! Usually the really good ideas stick in my head, they get me animated straight away and whenever I can I am thinking about them and trying to think of the right way to approach the subject.

Once I have an idea in my head, I start having a conversation in my head about it. I like discussing the idea with myself and seeing where it takes me. I know this sounds completely crazy but it keeps the subject alive in my head. Then when I feel happy with the subject I start to research it, if its a topic that needs better understanding or some basic fact checking. Sometimes I look at other peoples blogs and see what sort of things they have written about on the subject.  If its something medical I will research information about it and find good items I can provide links for. Sometimes its a subject that doesn't need any research (like this post) but these are few and far between.

Blogging is so much more than just typing words onto a page. For me its an escape from chronic illness and a way to express myself. Writing has become again to me as important as breathing. Although I only post twice a week - Mondays and then Thursday or Friday, I write most days. Either for future blog posts or editing / refining the ones that are already written.

My blog posts can take hours to write, which is something my husband really doesn't understand! He doesn't "do" reading and only saw my blog properly in the last few weeks. I do know that he is incredibly proud of what I am doing, even if he has never read it. I will chat to him about what I am writing about, he never complains that I take time out to write and he is very encouraging, always asking how many views my blog has received that day.

With the first draft of my blog post, I just let the words tumble all over the page, random paragraphs with random thoughts dotted all over the place. I am queen of tangent land - I am forever going off on one! I like to quickly get down whatever is in my head and then have a break from it for a bit.

The second draft I look at what is working and what isn't and if I have actually addressed the blog post theme or if I've gone off on a tangent. If the tangent is good and needs to be included I then work out a way to get it to link to the subject. This is then followed by another break.

Third, fourth, fifth drafts ( and possibly more depending on the subject) is about moving paragraphs around, changing things I am still not happy with and improving the flow of the post. Throughout the whole process I am constantly looking for errors and I never ever manage to spot them all. I hate it when I am really pleased with a post and its been published and then I see an error. Its horrible and happens far more than I would like it to.

The thing I struggle with the most is blog post titles, a lot of the subjects I am dealing with aren't that "sexy" so it can be difficult to come up with something that will catch peoples eyes when they are doing a Google search. Sometimes a post will have many different titles before I finally settle on one that I like. On occasions though it is whatever I can come up with before my deadline to publish. Some work, others don't. I am not a professional, I don't have an editor or anyone helping me write my posts this is a one woman outfit.

Once my new blog post has been published I then have to try and raise awareness about it. I do this through my facebook page www.facebook.com/pages/The-Myasthenia-Kid/205747292968956?ref=hl and my personal twitter account @kidmorris, I am also on google+. All this takes time and effort but a day "pushing" a blog post every few hours really increases the number of views it receives. I can get a bit fixated on the number of visits my blog receives. I have noticed that on the days I publish there is a big spike in views, which is music to my ears as it means my story is getting out there and I may be able to help others who are also struggling to get a diagnosis.

Currently I am trying to work at least one blog post ahead so that if I have a few rough days my blog can carry on without any input from me. This has been particularly important this month with a hospital stay coming up (fingers crossed that the bed is available) on 8th April (this is being written at 6am on the 7th April) and I have no idea what shape I am going to be in afterwards. As stated at the top of this blog post my hospital admission has now been moved to 14th April.

So that's how my blog posts come about if you were curious! As soon as I am able I will update you with how my octreotide trial went.