I’m back

Like all holidays, that sabbatical seemed to go alarmingly fast! It seems like 5 minutes ago I wrote and told you I was taking a break, for the first time in forever. Loads has happened 

since I wrote my last blog post back on 24th October. Despite the fact it has only been 3 weeks. Crazy how life goes.

Hubby and I had a good birthday and were spoilt by our friends and family. Due to being unable to get the time off work I spent the afternoon of my birthday with Heather. She brought a load of second hand clothes with her from a local group, where you offer things to the community and in return if you take an item you donate fresh food to the families being helped by the group who are receiving food bank parcels. The group is currently helping around 20 families who through no fault of their own are struggling. In all my life I don’t think I have ever known so many people who are struggling financially or so many people relying on food banks. When I was growing up I had never even heard of a food bank. Yet for some families these days it is the only way they can feed themselves once the rent and bills have been paid. So whilst I had fun with the clothes at the back of my mind were these poor families.

We had a good laugh trying on the clothes, my brain is taking a long time to catch up with the fact that I have lost 4 and a half stone (63lbs) I see smaller size clothes and think well that will never fit and then almost die of shock when I can get it on. Some of the clothes were hideous or just too revealing. But I am so grateful for the stuff I have been able to take from it to tide me over until I get to my target weight. At the moment its jumpers and stuff I can layer up that I need due to my poor temperature regulation and menopausal hot flushes. I am either freezing cold or throwing every item off because I am suddenly dripping with sweat. 

Heather gifted me a wonderful birthday present, which I haven’t stopped using since I unwrapped it. It is a hot water bottle that is long and skinny. It must be over a metre long and about 10-15cm wide. It can take up to two litres of hot water. What I love about it is that I can wrap it around myself. So I can apply heat to my lower back and hips in one go. Where as before this could have only been achieved using three. 

Mr Myasthenia Kid bought me a wool pressing mat to help me with my sewing and embroidery. It means I don’t have to wait for him to be home to get the ironing board out. Any surface can now be turned into an ironing board and it produces the most amazing results. I also got a beginners book on crochet. I have wanted to teach myself for ages and wasn’t expecting anything crochet related until Christmas so it made a lovely surprise. 

I managed to get lots of things made which reduced the panic I had been feeling. I still have a mountain of stuff to do but it is a much more manageable mountain. I was feeling before like I was being suffocated under the list of jobs that needed done which is why I took time away from the blog. I just needed to get rid of the jobs that I could and focus on the stuff that I needed to get done. Some stuff I can post here but the rest I can’t due to them being people’s Christmas presents.

I’m still making my way through lots of stuff but I no longer have to keep pushing myself beyond my limits. I am no longer surviving on painkillers and very little sleep.

We also managed a trip out for a few hours for a walk, somewhere I could take my scooter. Dembe adored going to Haldon Forest. He was spinning around like a kid with excitement.

 

It was so lovely to get out and blow some cobwebs away. I said to Jay in the car on the way home “if you told me at the start of the year that I would be able to feel this happy again ever, I wouldn’t have believed you”. Even when we had Dembe in the beginning I just felt like I was going through the motions. Now I feel like I am living again and want to be present.

I have taught myself to crochet ( how well I have no clue) I started on the 2nd November ( badly) and found some videos to help me. My hands have been fine up until today, the base of my thumbs are killing me this morning and my fingers are really stiff. I have managed to make myself a snood / infinity scarf from a yarn tea cake ( huge ball of variegated yarn ) which I finished last night and I am also working on a Christmas blanket.

 

The pattern on my snood is almost like one called vintage shells. So it is raised up and not flat, I made a lot of mistakes, mainly counting – thanks dyscalculia  but I am incredibly proud as considering I hadn’t even picked up a crochet hook until 2nd November 2019 , I think I have done well.

I’ve had two appointments, the eye hospital where they were incredibly pleased with how well my eyes are doing with these new drops. I still have the odd evening where I forget to apply them because I have fallen asleep but on the whole I do remember. I had the dentist last week and as I thought I need a filling so that will be happening on Tuesday next week. I am trying to keep that at the back of my mind. Tomorrow I have an ultrasound on my neck to check out the lump only I seem to be able to feel. It is non stop fun here.

We are back at dog training again. Dembe loves it there and cries with excitement as he knows where he is going on a Tuesday evening. We have also started dog agility training for fun, our first lesson was on Sunday. Dembe did incredibly well, his obedience training has really paid off as he was by miles one of the best behaved there, even though he was sick – probably because he had been swimming in the sea before we went. Yes my baby had swam in the sea!

This Saturday is Dembe’s first birthday! Can you believe it? It is crazy as we still see him as our tiny pup. He won’t be fully grown for another 12 months but I think he will always be our dinky dot.

And yes I am knackered and in pain from all this going out. I have to try to pace myself and get some down time in between excursions but unfortunately that isn’t always possible. I am learning to be kinder to myself and not see rest days as a failure or lack of achievement.

Empathy

When I wrote last week’s blog post Rainbow Bridge  I never expected in a million years the response that it received. It wasn’t just me hubby had people coming up to him in work, telling him that they couldn’t read it without shedding a tear or that it said what they felt but had never been able to express it. I had followers on Instagram contacting me about their recent losses and long ago losses too. On Facebook it was the same, with many people contacting me or leaving a comment. . It was emotionally hard as I am very empathetic, so when people start to get tearful when they are talking to me, it makes me cry too. But when I wrote the post I was half expecting it to stir up a lot of emotions because I had been in such a mess as I wrote it. I have to be honest I never did a final check on the post to look for errors, mainly because I found it so upsetting to read, it was real and raw. I haven’t even gone back to look at it now to refresh my memory before writing this one. I just can’t do it, I have already been in tears today twice over the dogs. It is always just bubbling away under the surface for me at the moment, although to look at me or to see any of my social media posts you would never know.

I am so touched that something I have written has moved so many people. I thank each and everyone of you who commented or messaged me. It was very hard last Thursday as I had no idea how it would be received. I had no clue if people would think I was wallowing, being self indulgent or a drama queen. That people would think that I should pull myself together and get on with the rest of my life. I promise you I am not self indulgent, wallowing or being a drama queen. I just write about life and my experiences. I try to give a voice to those feelings that we push down and don’t let anyone else see. I take a chance that people won’t reject me or ridicule me because I try to talk about things that many would rather brush under the carpet. Although there have been several articles regarding the death of a pet in National newspapers it is still treated with some degree of disbelief by those who have never had an animal / pet in their lives. 

The whole point of my post was for you – whoever you are, know that it is ok to feel whatever you are feeling, to express your grief ( and it is your’s and no one else’s) anyway that you like. That these feelings are totally normal. You are not weird, you aren’t wallowing in your grief, you aren’t an attention seeker and you are certainly not being a drama queen. You are hurting and it will take time to process all that emotion. Hell I am only 8 months on and there are days where I can barely keep it together. Days where all I do is cry. Days when I feel guilty when I know rationally I have absolutely nothing to feel guilty about. I just wanted you to know you aren’t going mad, I honestly thought at times I was losing it. All of those feelings, even the uncontrollable rage that even surprises you when you roar, is totally normal. It is the beast called grief and it doesn’t have to be something that you go through alone.

As I touched on in my blog post even when you have suffered from a significant bereavement such as a partner / child / sibling / parent / friend, people who haven’t been through that kind of grief can’t begin to imagine the enormity of the feelings of loss and pain. They may see you red faced, tear stained and see your grief but that is soon forgotten because it has no direct impact on their lives. The next time they see you, taking the kids to school, going to work, getting the shopping – all things you have to do despite the pain and grief they assume you are “better”. They don’t understand that grief goes on forever. They seem to think that grief has a timeline and by a certain amount of time say 6-12 months maybe sooner if they are real dicks, you “should” be “over” it. How do you explain that there is no getting over it? You are just getting through each day the best you can. There will be good days, bad days and the worst kind of days.  Life will probably never be the same again. But there will never be or has there ever been for anyone who is grieving a time when they are over it. Getting Over It has to be the most grotesque phrase ever. Followed by Time is a great healer. There is no healing from grief, you carry that pain forever.

I had people contacting me about dogs they had lost thirty years ago during their childhood that they still mourned for.  Others told me about their recent losses that they just couldn’t process or that in the proceeding days before my blog post it had hit them, after thinking that they could keep going and carry on as normal. I was quite honest when I spoke to them and told them Jay and I have very little memory of January and February this year.

 We know we got Dembe, we know he was tiny but ask us to recall anything significant like where we took him on his first walk. What the date of his first walk was, his first bark, his first growl all the stuff we would normally remember and we draw a blank. It’s not because we didn’t care about it, purely our brains were overloaded processing what had happened when we lost Frankie and Mollie within 7 days of each other. I am so glad that I started the Dembe Diaries blog and his diary that I base the blog on, so that in years to come I can look back and see all those things in black and white that my brain was unable to absorb at the time.

 I do remember Jay barely spoke in the first 4-5 days after it happened. It was quite stressful as I went into list mode, trying to control everything because my anxiety spiked. His anxiety spiked because I was making so many demands on him all the time and obviously he needed to have some control in his life too. It was very difficult trying to get him motivated to help me sort the house out ready for Dembe’s arrival. Especially as we couldn’t stand being in the house as it was just full of reminders of how empty it was. We did cry together and we did talk about our babies, all of our babies. But the pain and grief was hard because although it has happened to both of you (or all of you) it is also an individual thing that no one can make better or take away from you. People grieve in different ways. Just because Jay wasn’t breaking down in tears every 5 minutes like I was didn’t mean he wasn’t hurting or struggling to cope. You only had to take a look at him, ashen faced, tired and so very quiet, grief and pain was written all over him. For a few days I was worried that he was going to drop down dead from a heart attack or stroke he looked so ill.  

Grief is weird one minute you can feel like you are doing ok and the next minute it feels like the world is imploding. There is no rhyme or reason to it, you are carried on its current and it takes you wherever it pleases. There is no control of it, it controls you initially, even denying you sleep when it wants to. Both Jay and I suffered from terrible insomnia in the 7 days after Mollie and Frankies passing. We would find ourselves downstairs in the middle of the night watching crap on the TV whilst eating chocolate biscuits and drinking sugary tea in the hope we would just pass out from a sugar overdose. I remember one day within about 20 minutes of each other we both left the electric shower on, when we left the bathroom, returning to it a few minutes later, neither of us could work out why we had left it running. We had no recollection of leaving the bathroom.  Life really was being lived on autopilot, all we could do was keep putting one foot in front of the other and get through another day.

I want to tell you that things do get better, the grief becomes less overwhelming.  I feel like I am finally starting to live life again instead of just simply going through the motions. I am not saying that in 8 months you will also be feeling better, it could be less time it could be substantially more time. But there will come a time when you let a breathe out and know that you are starting to be you again.

Up until about a week ago the last time I listened to music and enjoyed it was 29th December 2018. That was the day that Frankie passed away and I had been listening to my Sinead O’connor LP. I didn’t play any music for a couple of weeks. After that time had passed, I tried but I found the noise too much and overwhelming. I had no emotional connection to the music. I would rather be in silence or have the TV on low in the background.  For the last two weeks I have played music non-stop. I have sung at the top of my voice and quite possibly scared the neighbours. I have found the joy in music again. I haven’t played my Sinead O’Connor LP, I think that one will take some time. I may not play it again for several years, I’m not setting myself a target, I will let it happen, I won’t force it. One day I will sing something from the album and it will be like an ear worm that won’t die until I play it. At the moment anything from that LP makes me sad.

We have also started planning things for the future. We have booked  a short break in the UK next year and we will be taking Dembe with us. It is very exciting. This will be the first time since 2006 that Jay and I have had any sort of holiday. It is only 3 nights away but it will do us all some good just to get out of the house and away from the day to day. I am nervous as hell as I have become a real homebody since becoming ill. Other than stays in hospital I haven’t been away from the house in 13 years. It is hilarious to me that I am getting a bit anxious thinking about it when Jay and I have travelled to Sri Lanka, USA (Florida), Antigua, Paris, Menorca and various places all over the UK for weddings / christenings. I know that we can do it, it is just my world has been so very small over the last 13 odd years.

So please be kind to yourself, wherever you are in your journey with grief. Everyone does grief differently, there is no one size fits all. What works for you may not work for anyone else.  Remember living life does not mean that you have forgotten those who are no longer with us. At some point things will get easier, you will reach a new normal. It is not a journey you have to do alone. If more of us start talking about grief and how it affects us we will educate those who have never experienced it and maybe create a little more empathy. The world could really do with more empathy at the moment.

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.

20 Things about me

As it is the Easter holidays and here in the UK the weather is glorious for a change, I thought I would just do a short blog post today. So here it is

 

1. I am 43 years old but I am staying 40 until my 50th, if anyone asks!

2. I am married to Jay and have been for nearly 17 years. We have been together over 20 years

3.I own three Weimaraners

Mollie

Willow

Frankie

4. Jay and I got married in Sri Lanka. Its our dream to go back one day.

Sri Lanka

5. I have Ehlers Danlos Syndrome hypermobility type

Prayer sign

6. I also suffer from PoTs – postural orthostatic tachycardia syndrome / severe autonomic nervous system disorder

7. I have a degree in History.

8. I collect Emma Bridgewater Pottery and have also managed to get my husband into collecting it too.

 

9. On the 29th March this year as I accompanied hubby in the car on his way to walk the dogs, we came across a man playing the bagpipes in the carpark

 

10. I have been vegetarian all my life but this year have become what’s known as whole food plant based, which is essentially a vegan diet that is very low in oils / fats and no processed foods.

Tofu “chickenless” fingers

 
11. I love posting photo’s on Instagram and I also love seeing others photos. You can find me @racheljillmorrismcgee

12. Emma Bridgewater’s social media team have contacted me twice now for permission to use my photo’s in their social media campaigns

 

13. I am very lucky that I have a great group of friends that keep me going when things get tough. I know many people who have chronic health conditions that don’t have the support network I have so I am truly grateful for this.

14. I am currently teaching myself to draw after a break of nearly 30 years. It’s hard going as I struggle to grip a pencil for more than a few minutes at a time. So a twenty minute lesson can take me days to complete. I am really enjoying it though.

 

15. I have been blogging since 2008 but didn’t  blog regularly until a couple of years ago. I have written more than 300 posts.

16. Despite being a blogger and talking about all aspects of my life I am quite a private person.

17. Hubby and I used to breed Weimaraners, Mollie has had two litters of pups with nine puppies in each

18. I love listening to the radio but I don’t listen to music channels. I love Radio 4, Radio 4 Extra and The World Service. On a Sunday night I will also listen to Radio 3 if they have a play on. The radio became a massive part of my life when I first became ill as I would spend hours in bed resting as I was so exhausted all the time. Radio was one of the few things I could do.

19. As I am a massive radio listener I am also a big fan of the Radio 4 soap The Archers about a rural community in the made up village of Ambridge.

20.  My favourite place on the planet, other than my home is Woodbury Common.

Woodbury Common

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.