Pulling Teeth

This morning has been mainly spent engaging in what would be called avoidance behaviours. I have been doing anything and everything to avoid putting pen to paper or in my case, speech to text. Blog writing can be hard especially when there is a myriad of things happening in your life that leave you exhausted beyond belief. To put it bluntly currently my state of health can best be described as crap but more about that later.


Sometimes blog post writing can be like pulling teeth. I have spent a couple of hours on a post that I had planned to publish tomorrow but it feels wrong. It doesn’t feel right, I don’t really know why and I am rapidly approaching a deadline. The things that are wrong are a) too tired to continue,  b) I have written a lot but seem to have got nowhere and c) I have tried editing it down but it’s still not right. That is the way it goes sometimes so you will have to accept my sincere apologies for this sorry excuse of a blog post.


I had promised well not promised, just said that I would write about my last caffeine infusion this week but it’s just not happening. I am sorry to say that the second infusion hasn’t worked as well as the first one. Even in the hours after the infusion where I should have been headache free, I wasn’t. I would have around 15-30 minutes headache free and then get stabbing pains on the top of my head. Initially I put it down to being over tired due to the travel, stress of going to hospital and meeting up with Sharon one of my oldest and closest friends. However the next day it became crystal clear that the second infusion wasn’t going to work as well as the first.


I spent a couple of days completely worn out by it all, so much of my time was spent lying down anyway as I was too tired to do anything else. So initially I only had pain after sitting up for an hour. The first infusion had allowed me to be upright for much longer for many days after. It is very hard not to become weighed down by it all. I have spent a lot of the last week in quite a low mood which wasn’t helped by the fact the only person I saw for over 7 days was my husband and the engineer who came to fix our sofa. It is sad when you get excited at the prospect of a visit from an engineer.


Since I wrote my blog post last week I have had a urinary tract infection which needed treatment with antibiotics, both the infection and the antibiotics made me feel quite sick/ ill. The once the infection cleared I was knocked sideways with bowel adhesion pain. I have had to do a fluid only fast today as it has become painful to both eat and drink. By doing the fast I am hoping that the pain will settle down and allow me to escape having to be admitted to hospital. The adhesion pain is draining and it doesn’t help that despite the high level of pain I am bloody starving. I hate having to fast as I am a hungry person, I rarely ever lose my appetite. So you know things are bad when I am willingly forgoing food.


What has cheered me up over the last week was Jay (hubby or Mr Myasthenia Kid) finishing painting our garden fence. It is a funny story how this came about. A neighbour of ours has put her house up for sale, me being extremely nosy and liking being able to see how other people have decorated the same house took the virtual tour of her property. The tour also included the garden and I saw that her fence panels were painted a lovely blue / green. I showed Jay who was equally enamoured with the colour. I don’t know the lady, despite living here for 13 years and her only being 3 doors up from me. A sad state of affairs really but as they say people really don’t know their neighbours anymore. So I googled Fence Paint Colours and her colour was the first one to come up. Obviously it is very popular. If I hadn’t taken the virtual tour Jay would never have had to paint the fence. We do have to say a big thank you to our neighbours on both sides who lent a hand.


fence left

fence right

If you are interested to know what the colour and brand of paint is, it’s Cuprinol Garden Shades in Seagrass. I just need to point out that I am not receiving any remuneration for mentioning this in the blog post, it’s just whenever I have posted pictures of the fence on social media everyone has been asking what the colour is.


The disappointment of the caffeine infusion not working as well has probably coloured my view of how effective it has been. I have only had a couple of days in the last week when I have had to take to my bed all day. I haven’t had any of the days that I had prior to the first infusion where I have spent hours hugging the toilet bowl due to the vomiting the head pain induces. I am however back to waking up with head pain that increases in severity the longer I am upright. It is gutting when something has worked so well previously and you felt almost human again.

Currently all I want to do is this


willow sleeping


The things you do for love

So last week was crazy busy, despite Jay and stating we were going to have a lazy week whilst he was on holiday.


As I wrote last week I had a surprise visit to hospital on the Friday for a caffeine infusion which I will write about more next week as the star of this week’s blog post has to be my husband Jay.


Back in May 2016 I set up a gofundme page to raise money to buy a new wheelchair and a power trike attachment so I could go off road and go out with my dogs on Woodbury Common, something I have been unable to do since 2008. As hubby and I were chatting one day trying to think up ways we could raise money, as like most people we don’t have a spare £5,000 lying around, I suggested that he should get his back waxed. He agreed immediately, now this is the man that needed gas and air for his travel vaccinations, who screamed the place down many years ago when he had his legs waxed for charity, so I was a little shocked when he said yes.


Hubby is hairy and it has never bothered me. If you had asked me before we met if I liked hairy men I would have said no. To be honest the only time his hair has bothered me is when it’s left all over the shower tray every morning looking like we have showered a black Labrador. It wasn’t until I saw the first video clip I realised how hairy he is, I suppose over 20 years I have just got used to it.




Within a few days hubby had it all organised and the sponsorship money was flooding in. Through doing this he has raised over £1100 I am so proud of him not just because of how much money he has raised but the pain he went through doing it.


Imogen, a very dear friend of ours videoed the back waxing for us. Unfortunately the complete version of the video is only available on my The Myasthenia Kid Facebook Page however we have managed to get the following videos onto YouTube. I also need to say a very big thank you to Abbie Wilson who did the back waxing in her own time and free of charge. That was so very generous of you Abbie and we really appreciate it. I need to warn you that the language in the video’s is a little fruity so it’s probably best you watch it with the sound down whilst children are present.

I just need to point out we are not a charity but a gofundme campaign. Apologies for my husband getting it wrong, I think the nerves kicked in.



It’s not too late to donate, we have set ourselves the challenge of a year to raise the money. If you would like to donate please use this link gofundme .

The things you do for love and a decent wheelchair, what next?

He has told me skydiving and abseiling are definitely out.