Mish mash

I will admit I am pretty tired and have lost my mojo with the blog this week so I thought rather than post nothing at all, it will be a bit of a mish mash of lots of different things!

I had my physiotherapy treatment today, which consisted of deep tissue massage and ultrasound treatment. I am feeling very sore, nauseous and headache. Which is what always happens when my neck has been messed around with. I will feel better tomorrow but for now I feel like I have been through the 1600rpm spin cycle of my washing machine! The good news is that the pins and needles I have had in my left arm/ hand and shoulder has already improved significantly from this session earlier on today. I am booked in again for a treatment in September as my physio is away in August. Lucky for some. She is a miracle worker and I enjoy my sessions with her as we have long chats sometimes very in depth and emotional and sometimes fluffy. But it’s a good laugh even though the pain of being prodded makes me levitate above the bed sometimes. 

My neck muscles have become very tight again which is obviously the complete opposite of what EDS is supposed to do but we believe it is my bodies way of trying to keep my neck and head safe due to the lax muscles, ligaments and tendons. I hold all my tension in my neck and all my headaches come from my neck. It is a situation that has got worse over the last few years. At the moment I am resisting wearing a collar full time as whatever strength I do have in my neck will disappear completely. I am also aware that nothing touches the pain of a neck induced headache, well that isn’t strictly true as diazepam is the only thing that helps. But quite rightly the doctors don’t like prescribing that and I really can’t be bothered at the moment to go and beg. 

The other reason I won’t wear a collar full time is vanity, plain and simple. It makes my face look fat and it doesn’t need to look any fatter than it already is.

I promised a mish mash so here it is. Ages ago I wrote about my hirsutism, it initially started when I was put on steroids in 2008. I have always had a blonde moustache over my top lip but the steroids made the blonde hair thicker and much more noticeable to me.  I also grew more peach fuzz on the side of my face. Age and possibly being at the start of the menopause has given me a lovely crop of black hairs on my chin that like to go unnoticed until they are 2ft long or I have had the dentist / doctor / hairdresser / friends over. They only stop playing hide and seek about an hour after you’ve been at the dentist / doctor / hairdresser or had company. Despite the fact that you checked your known outcrop spots religiously using both natural daylight and the torch function of your mobile phone.

Over the years I have tried a variety of hair removal tools and they have all been crap. Hair removal cream results last for about 12 -24 hours until you can start feeling the regrowth. Plus I became allergic to them so whilst I would have a hair free top lip I would end up with a red raw line above my lip. I even ended up with chemical burns on one occasion so after that I haven’t used hair removal cream again. I have tried plucking but that is ridiculously time consuming. You also need very good eyesight and light to get a reasonable result. I then tried using Jay’s ear hair trimmer as it had a variety of different cutting heads. The problem was the hair would be back within a few days and feeling prickly because of the blunt ends caused by the cutting blades.

So a while ago I looked into waxing, I have no idea what prompted it. I use an epilator for my legs, so it probably came from that. I looked around on Amazon and came across the wax warmers, wax beans and all the bits you need to give yourself a wax treatment. I ordered all the kit and last week I started trying it out. I have found it remarkably easy and I don’t need really good eyesight to produce good results. I won’t lie the first time I did my top lip it made my eyes water but I was amazed at how much it took off. I bought some wax for sensitive skin and without colouring. As the wax was pale I could see all the hairs trapped in it, so despite my eyes watering I was pleased. 

After my first go it was clear I needed to work on my technique, so I watched several videos on YouTube. That has been a massive help, as with the wax beans you don’t use cotton / paper strips to stick to the wax, the wax sets firm enough that you just pull the wax strip off.  The real skill is creating a lip at the bottom of your wax strip so it make it easy to remove. I haven’t quite mastered that yet but I am getting there. I had another go before physiotherapy – that’s another occasion these hairs like to come out of their hiding places, this attempt went better. I think it is going to be one of those things that the more you practice the better your technique gets. The results have been really good and lasting much longer than any other hair removal technique I have tried.

Going off on another tangent, like I do. I have been managing to get out and about up on the common accompanying Jay and Dembe using my mobility scooter. With the weather being so dry the ground is nice and compacted making it must easier for the scooter to cope with being off road. Dembe gets really excited when I come out with them both for a walk. I have been managing to get out a couple of times a week.

 

Dembe is 8 and a half months old now and loves his walks. Although he doesn’t go as mental as the Weimaraners did. 

I  am still working on my quilt, I managed to square off all the blocks at the weekend and they are sat waiting to be sewn together. On Sunday I was on a local facebook group where people offer things to give away for nothing, in return the people that have stuff off the page must make food / toiletry donations to help those families in need locally. I spied some curtains that had been posted on the page before but no one had shown any interest. At the time I was drawn to the birds on the material. I thought I would be able to upcycle the fabric into bags or something. However when I got them home I realised how much I liked them and wanted to use them as lounge curtains. I had been looking to replace the curtains in the lounge for years but I had just never seen any curtains that I liked. 

The curtains needed some TLC, I don’t think they had seen the inside of a washing machine for many a year. They also had some holes in them where the fabric had become weak from being exposed to strong sunlight. What should have been a simple job turned into an all day event. I repaired the curtains in the space of an hour but found that they were too short for my window. So I ripped open the bottom seam as I could feel there was extra material contained in the seams. I only needed 4 inches at a pinch 3 would do. As luck would have it one curtain contained 17 inches and the other 15 inches. The lining had also been folded up. I was worried as these curtains were very old that the fabric that had been tucked away in the seam maybe brighter than the fabric that had been exposed to the sunlight but there was no discernible difference between them. I altered the curtains and the lining and now have a wonderful set of curtains for the lounge.

The fabric design is called Spice Island and was produced from the 1960’s until the 1980’s. It was sold in the UK department store called John Lewis and the designers name was Pat Albeck. You can find out more about her here – https://www.theguardian.com/artanddesign/2017/sep/15/pat-albeck-obituary

Quite spookily she was Emma Bridgewater’s mother in law. For those of you who follow my blog you will know that I collect Emma Bridgewater pottery. So it seems apt that I have the Spice Island designed curtains in the same room as the majority of my pottery collection.

I am so pleased with the job I have done on the curtains as I have never done them before due to the worry about having to be 100% accurate – not something I am brilliant at when it comes to straight lines. Mr Myasthenia Kid loves the curtains to, it was his idea that we have them ourselves instead of me cutting them up and using them to make bags.

Anyway like I said this week is an utter mish mash of stuff. I hope you have enjoyed the many tangents I have gone off on! 

See you next week.

Scrap Busting

Around two weeks ago I stumbled upon a sewing challenge on social media and thought why not. Up until now I have always been too scared to join in with sew along projects, as I never felt that my work was good enough or that I had enough experience. However with this challenge as it was using scraps of fabric cut into 2 inch wide strips or 1 inch wide strips, I felt that I wouldn’t be under any pressure to be an expert quilter. 

I was in a bit of a panic though as I had joined two weeks after the challenge had started and members of the group were already sewing their strips together or had finished sewing them. I joined late on a Friday night, as I had been unable to sleep I had been on social media, when a video from Sugar Bowl Crafts  popped up. I watched it and thought that looks fun and it was promising a quilt made in record time. 

For the uninitiated a sew along is a just a fun thing to do, completely voluntary and you either are sewing part of a project that will be sent off and joined up with everyone else’s or a project for you to complete at home. Some sew alongs require you to buy kits or set fabrics, others you get to choose your own. I liked this one as it is using scraps and I have been on a bit of a fabric buying ban because I am drowning in fabrics. Some I have bought and others I have been given. I always keep my scraps as I hate the thought of spending money on fabric and then not getting the maximum use out of it. I have scraps stored in 3 different locations and it was starting to feel overwhelming so the idea of a scrap-busting quilt really appealed to me.

I recently made a quilt for Mr Myasthenia Kid, using some charm squares ( these are 5 inch squares of fabric you buy pre-cut). He has wanted a quilt for ages and I kept promising him I would make one. But I never seemed to find the time. Since getting the embroidery machine and the dogs passing away at the start of the year, sewing had taken a back seat. I had lost my sewjo, I had done quite a bit of machine embroidery but actual sewing not much. As I was making Jay’s quilt the love for sewing came back, I was planning on starting the Anna Maria Horner quilt kit I bought last year but have been terrified to start it in case I messed it up. Plus it is a huge quilt almost king sized and my largest quilt that I have made hasn’t even been half that size. So this sew along was also a chance to put together a large quilt – my largest yet. So it was a win win on all fronts.

Jay’s quilt.

The quilting on this quilt took over 4 hours and I lost two needles in the process. I am so pleased with it though as nothing was bought to make it. It was all made with items I already had in the house.

The sew along quilt’s design was random strips of 2 inch wide fabric joined together (or you can do one inch wide). My first job was to go through my scraps and pull out the fabrics I wanted to use and sort them into colours. Each piece of fabric tells a story as I can remember where it came from and what project it was used on. I had 4 charm squares left from Jay’s quilt above, fabric left over from the lap quilt I made my mum for her birthday last year. Point to any of my fabric strips and I can tell you if it was gifted, came in a subscription box or if I bought it. I love that about this quilt it makes it highly sentimental and it is like my sewing journey in one quilt. 

I thought the sorting and prepping of the fabric would be a quick process. I hate this bit of any project, I loathe cutting stuff out. I am the worlds slowest and you can guarantee I will mess it up due to my poor maths skills (why thanks Dyscalculia ). I have a creative grids stripology ruler which has been a godsend. It has cutting channels on it every inch and half inch, so you can cut across the entire width of the fabric and know that the width will be correct…..as long as you chose the correct cutting channel. Eventually after several sessions over a few days I was in a position to start sewing the fabric into long strips.

I sorted the fabrics into colour groups. Group 1. Red / pink / orange, Group 2. Blues / purples, Group 3. Yellow/ cream / white, Group 4. Green,Group 5. Grey / black / purple grey. Within those groups I put all the same fabric together and put them into piles (pinning them) that way when I sewed the fabric strips together to make my large strips I could choose fabric from a pile ensuring I didn’t have to worry about sewing the same fabric together next to each other. It did sort of remove the randomness, rather than taking a chance and sticking my hand into the bag and pulling out a strip to sew.

I also at the same time cut one inch strips, from the same scraps and sorted them the same way.

Once the different fabrics were sewn together ( as above), the metres ( and it was metres) of fabric were then cut into 10 inch strips. For the 1 inch strips once they have been joined together you cut them into 5 inch strips.  The next part is to then sew 6 ten inch strips together to make your 10 inch block. Here are the 60 blocks that I have sewn, just so you get an idea.

I find it amazing how different the blocks look from a distance and all together.

Here are the first 23 blocks that I laid out on the kitchen floor.

I had to get hubby to stand on a chair to take the photo for me. Over the next few days as and when I had the energy I would put together the remaining fabric strips and turn them into blocks. Until yesterday when I finally completed all the 10 inch blocks I intended to make.

I had to do the layout in two settings as there was no more floor space!

Here are the remaining blocks, being “lab” tested 😄😄😄

I love the layout that I have in the photos so I am contemplating sewing the blocks together like this after they have been trimmed to 9.5 inch blocks.

I am now starting on my one inch fabric strips, joining them together. So far I have done the greys/ blacks/ purples and I have also completed the blues. I have three more huge bags of one inch strips to join together before I then cut them into 5 inch strips and turn them into blocks the same way the 2 inch strips were. I intend to use the 5 inch blocks as a border around the quilt – which is different to the sew along border but I like being different. I have no idea how huge this quilt will turn out but hubby is already making noises about it being on the 3 seater leather sofa as it combines all the fabrics that we have in the lounge along with many more!

I have really enjoyed working on this but my old injury / problem has come back. My nerve has become trapped in my neck again and is leaving my hand and forearm (left side) with pins and needles / numbness. It is just as well that I haven’t spent any money on the quilt as I have had to book in with my private physio again which costs £45 for 30 minutes. She is ace but on a limited budget it’s a lot of money to find in one go. So I am having to set a timer when I work and do 15 minutes, have a break and then do 15 minutes. I will be seeing her a week Tuesday.

It isn’t just sewing that is triggering the trapped nerve but any movement at all that involves my arm. Even using the chromebook or taking a drink is enough to have the cold pins and needles feeling start. It is highly irritating as it means I am severely limited in the amount of time I can spend doing the stuff I love. I am hoping the physio can get the blasted thing untrapped and me more comfortable again.

I will be sure to update you all with my scrap busting quilt progress.

Post Easter Vibe

Well as usual when there is any disruption to my routine I am really thrown. Like I have said before and in the blog post Upheaval I don’t do well with change. Easter always throws me out as do any bank holidays, it can leave me unsure of what the day is for a week or so. I know it’s not just me everyone is thrown when there routine is altered. So for this week I thought I would just update you all on the sewing and embroidery projects I have been working on recently.

I have been making a lot of cushions. I like making cushions as it combines using my embroidery machine, sewing machine and overlocker. I have also been using my embroidery machine to embroider motifs onto sweatshirts. However my latest make only used my sewing machine and it was nice to get back to basics. I made some bunting, 10 metres of the stuff to go in the garden once the revamp is finished. (currently being held up waiting for various different parts to arrive)

The bunting has been made out of various scraps of material I have had lying around for a while and some fat quarters that I didn’t know what to do with. I can’t wait to have it hung in the garden this summer. It’s the first time I have made bunting and I am very pleased with it. I don’t know why I haven’t made it before.

I really love using my embroidery machine, it gives me another way to express my creativity and also make items that are personal to the gift recipient. I am in a cushion making phase at the moment, which I really enjoy because it uses so many skills. Here are just some of the ones I have made in the last few months.

I love the ones with the Deer on they are my favourite. I also really love the Llama one and the Lion head. Embroidery always cheers me up when I am feeling low, it’s been really hard since Molly and Frankie passed away, even though I have Dembe it’s not the same. I wouldn’t be without him and he is enormous fun but it is a massive change to my routine with him being a puppy.

I have also really enjoyed learning how to embroider sweatshirts. I buy plain £10  unisex sweatshirts and then embroider a nice design on them. It has been a case of trial and error getting the stabilisation right on these. I am much happier with the last three I have done, although I still wear the other two that I did before Christmas.

What is even better with this design was that it was free one month. I am also starting to now get adventurous and changing up the colours from those that my embroidery machine says to do it in. It is important when you do that to write down what colour you are using instead of the one listed on the screen or you can get yourself into a bit of a pickle.

 

I wear this sweatshirt a lot as it is totally me. Whenever I am stressed or anxious I try to sew as it keeps me focused on the task at hand rather than worrying about something I have no control over.

 This is a terrible photo but this is my favourite design that I have embroidered onto a sweatshirt I call it Chinese Chrysanthemums. I bought this sweatshirt especially to embroider this design onto it as I felt it was so dramatic it needed the black background to really pop.

What I love about embroidering clothing is that by changing the colours, placement etc you end up with a totally unique piece of clothing. I am going to try some more embroidering onto t-shirts for the summer. I will use a few of my old t-shirts to practice on to ensure I have the level of stabilisation right so there is no puckering or distortion of the design.

I think I love my embroidery machine ( like I love my sewing machine ) because I have to use the old grey matter and solve problems. It was nice making the bunting recently as it was going back to basics and just doing something that wasn’t too taxing but still needed thought about. 

I also made a peg bag recently, which has made me chuckle as it is like I am doing my sewing journey in reverse. Last year I was making quilts and bags, designing my own patterns etc this year I have made some bunting and now a peg bag. Both though are good basics to master. The peg bag I made my own hanger from wire as I didn’t have a small enough hanger and then made my own pattern. I used remnants from another project to make the bag. Now I can’t wait for my washing line to be back up ( once the garden is sorted ) so that I can see my peg bag in use.

I like using my sewing skills not just to make decorative items and gifts but to also solve problems. So recently I have made us a beautiful front net ( type ) curtain from a Broiderie Anglaise panel I was given. It is brilliant as it stops the light glaring onto the TV during the day but doesn’t impact the light levels in the house. It also provides us with some much-needed privacy. It looks really nice from outside the house as well. The problem with our lounge window is that it is south-facing so we end up with the light streaming in which is lovely but can also mean you end up all summer long having the curtains closed whenever you want to watch the TV. With the panel being denser than net it gives us privacy which we both value (I know that may sound odd from someone who writes a blog). It’s also had the added bonus of stopping Dembe looking at the window and barking at everyone who walks past! 

Physio v Torture is there a difference?

I wrote back in December that I had gone back to my physio Jane, who is just brilliant. I had been having trouble with a pinched nerve in my neck which was causing areas of numbness, pins & needles and burning sensations. Thankfully working with her has reduced these symptoms massively to the point now where the pain is limited to my neck and I have the proper feeling back in my arm and hand.

So far my physio sessions have been ultrasound treatments and deep tissue massage / manipulation. Whilst deep tissue massage may sound blissful and you have the image of a spa, let me burst that bubble for you. It’s really fucking painful. The evening after treatment is usually spent in a whole world of pain with a humdinger of a headache. Tonight is no different. Although I know that things are improving massively it just seems so unfair that I get so much pain after each session. I know I will be fine by the morning once my overly reactive body has calmed down again but it doesn’t make it any easier.

I spend a lot of the session hovering over the massage table as the pain makes me levitate. Some times when she is working on a certain point initially it will be pain-free but as she increases the pressure she can hear me take a sharp in take of breath. That is the first warning it’s getting sore. After then I tend to try to jump away from her.

My next physio goal is to start some gentle Pilates exercises. Basically my muscle tone is horrendously poor. Its my own fault as I worked so hard on it in 2014 and I let it all go to waste when I developed my spinal fluid leak. A lot of things went to pot then all of which I am working hard to put right – diet went out the window, Pilates and just taking care of myself. I am determined to put this right. Even though I know that initially my core muscles will not be happy, probably none of the muscle groups I will be activating will be but it will help stabilise my joints and support my spine. 

Over this last week I have been having terrible problems with my joints, lots of grinding, subluxations and pain. My muscles have equally been naughty I have had muscle spasms at the drop of a hat. My feet seem to love going into spasm – that is very sore and it tends to take them ages to come out of it. The middle of back where the bra clasp would sit is also going in and out of spasm on a regular basis. I wonder genuinely, if it is to do with the storm the UK has just been battered by as prior to that my pain levels had dropped for the first time in well years. I know we EDSer’s can be sensitive to barometric pressure and its the only thing that is different.

I’ve had to get a yoga mat to perform my exercises on as a little devil disguised as a cute little yellow Labrador decided to use our grey rug in the lounge as a toilet twice … that we know of. So I thought we had just had two weeks of 100% no accidents and maybe he had been using the grey rug? The house certainly wasn’t smelling of dog pee. We were going to replace the rug anyway, it now just been removed with no replacement planned until the house training is for sure 100%.

My physio had me run through some extra exercise treats she wants me to attempt… I don’t think I will be able to take a deep breath tomorrow let alone belly laugh. I am always amazed at what tiny Pilates movements can do. I know that they are brilliantly effective but I also know due to the current state of my spasmodic muscles I am going to have to go very gently.

Even with the current state of play with my muscles and their desire to go into spasm with no warning, I have managed to get back to some creative work. I have done quite a bit on the embroidery machine, I have used my overlocker and my sewing machine. I managed to make 5 cushion covers last week. All of which I am very pleased with, there are little things that I could have done better but that is me being stupidly hard on myself.

After sharing with friends the birth announcement cushion I had made for a friend of ours, two people asked me to make them for as well. This was a nice surprise as after not sewing ( properly) for over a month and having no desire to I had lost my confidence.

I also made two book lovers cushion covers, these will be gifted later on in the year.

This one will also be gifted later this year.

This week I wanted to see how this design would stitch out, I bought it in the sale but everything turned to rat shit and I never got an opportunity. As soon as the urge to create came back I really wanted to see how this design would come out.

I still haven’t decided If I am going to frame this or make it into a cushion cover. It took an age to stitch out over an hour and a half, just under 60k stitches and 21 thread changes. I was exhausted by the time it finished and in pain. My muscles are so weak currently that I can’t support myself sitting up for any length of the time.

I am feeling happier at the moment, although I ended up crying over Mollie and Frankie today, it came out of nowhere. I feel like me again after being under a huge black cloud for weeks. 

Now to take some pain killers thank goodness I am not back at the torture chamber, I mean physio centre for 4 weeks as my lady is going skiing.

Hoping for a quiet 2019

My last post was published on the 10th of January when I felt like my whole world had caved in. The last few weeks have been very hard, I miss Frankie and Mollie so much that my heart aches. There has not been a day that has gone by where I haven’t wept with the pain of losing them as suddenly as we did. To lose two dogs in 7 days is something I wouldn’t wish on my worst enemy. I wouldn’t have got through it without hubby by my side. In fact I would have probably given up completely had he not been here.

 
Due to the shock, upset, grief hubby has taken some time off work. He already suffers with anxiety and depression and to ensure he didn’t take a nose dive he saw the doctor and got himself signed off. He didn’t want to see anyone or talk to anyone. Losing Mollie hit him very hard as she was his dogs. Plus it was very traumatic for us over 24 hours where it became clear that she had suffered from a stroke and there would be no recovery from this. We nursed her overnight and made sure she wasn’t suffering. Right up until the end she only wanted her dad, whenever she was out of his sight she panicked. Jay stayed with her until the end as I had stayed with Frankie just the week before. To say our hearts were broken would have been an understatement.
 
I took a break from this blog as since the beginning back in 2008 the dogs have featured quite heavily in it. My Gravatar is me with Frankie, Frankie is the banner on WordPress, on Twitter his photo is my profile picture and its the same on Facebook. Although I have managed to change my about me pages on both blog platforms, I can’t remove his photo from any of my social media profile photos.  It feels like a huge chunk of my life has just vanished. Life as I knew it was taken away from me in the space of 7 days. I never knew I could feel so utterly broken by the passing of three dogs in just a little over the year.
 
For a few years Mr Myasthenia Kid and I had talked about what would happen when we no longer had any dogs. Initially we had said we would get a Labrador ( black) then we talked about a Beagle and also a Bracco Italiano. However for the last few months I had said I didn’t know if I wanted another dog, I knew losing our last two Weimaraners would hit me really badly and by getting another dog meant at some point in the future I would have to go through the pain of losing it all over again. Jay was not having any of it, he said that I was already completely socially isolated and without a dog I would have no company at all. He felt it would be very damaging to my mental health. He was right, as 7 days without a dog in the house were the worst thing ever. I missed everything about having a dog, the cuddles, the mess, the unconditional love, someone to have silly conversations with.
 
By the Sunday after Mollie’s passing we decided that we would get another dog and we started looking on-line for Labrador puppies. I had to give myself a crash course on Labrador’s having not ever owned one. I located several breeders who had litters on The Kennel Club Website. Luckily one lady immediately responded to my email and told us she had two male yellow labs for sale. Obviously we had originally said we wanted a black lab but by this point it didn’t matter what colour it was. We needed our house to feel like a home again, we were both distraught and sinking fast. We arranged to travel to see the 2 pups available the following day.
 
The rest is history, we now own a 9 week old Yellow Labrador called Dembe. We chose his name from the TV programme the blacklist, it means peace. Which you will probably agree we need by the bucket full. Dembe came home with us on Friday 11th January. You can read all about him   here as I have started his own blog for him. I will from time to time have photos of him on this blog but it is much easier to have all the news about him on a separate blog. Every Monday I will give a run down of what he has been up to the previous week. 
 
Some of you may be judging us, that we got a new dog too quickly or that we didn’t love our other dogs that much because we replaced them with Dembe. Dembe is not and has never been a replacement. He is an addition to our household. He is very much-loved for the dog he is and will become. Anyone who thinks any less of us for this can just fuck off as far as I am concerned, your opinion is of very little value to me.
 
So whilst I took a break from here, I have been setting up Dembe’s blog. I managed to keep writing which out of all the things I do creatively was the only thing that I could keep going. I hadn’t been able to sew since Mollie passed away. I managed on the 16th January after a break of nearly two weeks to sit and do a small piece of embroidery. Mainly to ensure that Dembe wasn’t scared of the noise the machine made. The only thing that has freaked him out so far has been the ironing board and it does the same to me if I am honest.
 
My health has been hit quite hard by the sudden turn of events. I have suffered vertigo, continuous headaches, back spasms, Eczema, migraines and ptosis. As usual it a few days after the event before I started to go down hill. Thankfully with Jay off work we have been able to manage Dembe’s care and socialisation process. To be honest without him I would have crawled into bed and never come out again. This little chap has saved us both. The lady that we are friendly with at the vets ( who had a soft spot for Frankie) called Dembe our miracle dog. She knew how much our lives focused on our dogs and also knew that without a dog in our life we would fall apart. 
 
So many people have told us that we have done exactly the right thing. It doesn’t mean that we loved our Weimaraners any less, it is because we loved them so much that we had all this love to give to another dog. 
 
Dembe has bonded with us both. He is such a happy, laid back dog. His tail wags continuously. Everyone who meets him falls in love with him. I thought at one point after Mollie had passed away that Jay looked like he was going to drop dead from a broken heart. He was just an ashen colour. I have seen Jay poorly many times but this was the worst I had seen him look for a long time. Since Dembe’s arrival he is looking so much better, we both feel like there is a future in front of us. In the immediate aftermath of losing both dogs it felt like we were staring into the abyss .
 
I am hoping that my health stabilises shortly, it is going to have to as Jay goes back to work from Monday 21st and it will just be me and Dembe. However Jay will be coming home at lunch times to help with feeding and toileting. He still has a few weeks until he will be able to go out for a walk. Whilst Jay is home though I am trying to take it as easy as possible. Jay has been doing everything for me as usual.
 
2018 ended in a way that I didn’t see coming and 2019 started in a way we never envisaged. All I can hope for is a quieter year for the rest of 2019.
 

 
 

 
I will never forget the love that these three beautiful loyal dogs gave me. Run free my darlings, we will miss you everyday for the rest of our lives.

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.

Balancing Act neck pain v embroidery machine

In last weeks blog post I told you all about my new toy, my embroidery machine. I’ve had it for 9 days (Tuesday) and I was very well-behaved last week. I had a quick play on Tuesday and then knuckled down to finishing off a whole heap of half-finished projects. I really dislike having incomplete work loitering and taking up space. Last week I had part made soft toys hanging around – the body parts of 15 toys to be exact and some part made Christmas stockings, along with three gnomes. I did have a really good crack at them and managed to clear all the owls, gnomes, Christmas stockings and two foxes. However one of the foxes still has his brains *stuffing* exposed as my hands have been too painful to attempt to close the turning gap. My hands are so sore this evening I am having to write my blog post using my speech to text function, which is fun!

 
My neck has at times been horrifically painful. Now I know how easy it is to exaggerate pain. People bandy around the word agony at the drop of a hat but still manage to get on with day-to-day living. When I say agony I mean no painkillers are touching it, my rib cage feels like it’s collapsing inwards, I want to puke and I can’t move very much. It isn’t like this all the time thank goodness but it can start within seconds of sitting at a table or doing anything that involves lifting my arms away from my sides. The only thing that helps is putting on my soft collar and heat. The problem with heat though is that it will trigger a hot flush or can make me feel faint. I’ve found that when it’s at its worst diazepam helps as it tends to trigger muscle spasms. As does gin but I don’t like drinking every day and I have to keep it to the bare minimum.
 
I thought the embroidery machine maybe a way of being creative without triggering the neck pain…I was wrong. Sitting in any chair where my back is not properly supported, is a massive trigger. I don’t tend to get the pain when sat on the sofa because I am not sat bolt upright. I am now waking up with the pain during the night, which means whilst sleeping something is slipping out of alignment. When this happens the only thing I can do is put my soft collar on for a few hours and hope that its enough to work as along with the neck pain I get a thumping headache. I do thankfully have a doctor’s appointment at the end of this month. I must have blood tests next week as the doctor was concerned that I possibly have vitamin deficiencies which are causing the pins and needles in my arms / hands / legs and face. However as a soft collar gets rid of all my problems I’d hazard a guess that my neck is unstable and this is the problem. Quite common in people with EDS but a nightmare to get diagnosed in the UK.
 
I had to limit my sewing to just short bursts with lots of breaks. Which meant I didn’t feel very productive at all during the week. I did manage to wait until Sunday before I played on my embroidery machine again.
 
Saturday my neck and back was awful so I spent the afternoon looking on my chromebook for free embroidery patterns. I downloaded quite a few. I also found on Etsy two really lovely Unicorn patterns. One cost me a whopping 87p! and the other £1.50. I was so proud of myself using my USB port adaptor as my new chromebook has a micro USB port, ( I’ve had to upgrade my chromebook as my mark one chromebook can’t transfer data between a USB stick and the chromebook or vice versa. It can read them you just can’t do anything with it, not very good when you have an embroidery machine that you can use downloaded patterns on). So on Sunday I decided I would give the USB stick a go on my embroidery machine. To my delight the patterns showed up straight away. I had been panicking that maybe I would have to format the USB sticks for them to be used by the embroidery machine but it all worked fine.
 
I decided I would try out the Unicorn patterns on some face cloths that I had bought as a job lot from Amazon. I already had some Madeira Avalon Film wash away stabiliser, so it was just a case of setting up the hoop – face cloth then stabiliser laid on top to stop the stitches sinking into the pile. Then place it in the hoop ensuring its wrinkle free and as taut as possible. This took me several attempts, purely as I just wasn’t feeling very confident with what I had done. The first one I messed up as I managed to sew the top right hand corner of the washcloth to the back of the design. I had to cut it out of the hoop! Apparently this is a common mistake so I didn’t feel so bad. The second one however came out perfectly.
 

I also managed to centre it on the wash cloth perfectly.
 

 
 
I did the second one later on in the day. When I started it I hadn’t realised there were 21 thread changes. The first Unicorn had been 10, so a massive difference. I loved the small details of the flowers and leaves which you can’t really see in the photo. Again I managed to centre this one properly as well. So these will be Christmas gifts. The stabiliser washes away. I cut off the excess as I will be able to use that on small bits of embroidery and then put both flannels in lukewarm water where it just vanishes. I put them both in the washing machine to ensure all traces of stabiliser had gone.
 
 
On Monday afternoon I had a quick play as I fancied seeing what the redwork would look like. 
 

It’s not a good photo and to be honest I am not happy with it. The tension is out or I have threaded the machine poorly as bobbin fill has come to the surface so there are lots of little white dots all throughout the redwork. Mr Myasthenia Kid wants to frame it and take it into work for his noticeboard. So I will cut it down and run a zig zag stitch around the edge so it doesn’t fray.
 
Today I had a go at this Christmas Wreath. The wreath came out beautifully but the “Merry Christmas” has come out terribly. Again either the tension was off or I had threaded the machine poorly. It’s all  a learning process. I have spent a bit of time this evening looking through the manual and found out lots of things I should have known!
 

 
 
I am really enjoying using the machine and learning all about it. The patterns it comes loaded with are really stunning. It’s only the unicorns that I have bought and a dear friend on instagram lent me some USB sticks with lots of designs on to copy.
 
So if I can get a balance between my neck pain and time that I can use my machines I will be happy!