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.

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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.

First Physio

Today, Tuesday 11th December was my first physio session, in 4 years. I had no idea so much time had passed since I had been to physio. I really wish that I had kept up with it, even if I just went twice a year as perhaps I wouldn’t be in the mess I am now but life just gets in the way sometimes. Things take priority and then your routine falls by the wayside. Looking at it now I realised that I kept those exercises up for two years until I suffered my spontaneous CSF leak and then it was just too painful to do them.

I back to square minus 100, not one. I have zero core muscle strength. My shoulders are rolling forward and are permanently hunched. I am in pain from the base of my skull to my coccyx. When the doctor suggested physio I knew there was only one I was prepared to see and I was so lucky she was still working there. I use a private physio as she is prepared to listen to me and work with me. Don’t get me wrong I love the NHS, I owe my life to the NHS as without their intervention as a child I would have died from an intussusception. However the NHS isn’t great at treating the growing number of people with chronic illnesses, they want to fix you and then move onto the next patient. With chronic conditions like EDS, PoTs etc there is no fixing, so allotting us a certain amount of physio sessions at 15 minutes a go doesn’t really provide us with much help. Especially if you are working with medical professionals that do not understand your medical condition.

The physio I worked with went away and learnt as much as she could about EDS, then we worked on a plan together. It soon became clear that I wouldn’t be able to do the exercises 4 times a day, I would only be able to do them once a day and that was fine with her, Where as if I had tried to have that conversation with an NHS physio ( and believe me I have) you get made to feel lazy or guilt tripped that you are wasting their time. Seeing her again today, she had already pulled my notes and immediately recognised me in the waiting room. She greeted me like an old friend.

My back is in a mess, I know that and she knows that. We both believe that I suffered a whiplash injury when I fell on the snow and ice back in March and that has probably caused the majority of the problems I have now. Basically my muscles are very tight and tense both sides of my spine with the right side being the worst. My muscles are now guarding me against further injury by being tense and barely allowing me to move. She described it as walking around with a clenched fist permanently. After 30 minutes your hand is going to start aching after a few hours it’s going to be very uncomfortable. After months…well you get to the state I am in where everything hurts constantly.

Today’s session was very gentle before we can even start physiotherapy properly we have to get my inflammation levels down and the muscles to relax a little.I had to lie face down on a couch. My face had to go through this little hole so I could only see the floor although I think I kept my eyes closed for most of it. Now I said the session was gentle but in no way was it pain-free. My nerves are misfiring and have become so sensitized that even the lightest touch is causing me pain. So imagine having someone examining every joint in your back. Some joints were ok, they were sore but it was bearable, others had me levitating off the bed as I yelped and tried to squirm away from the light pressure being applied. 

My physio tried to massage some of the muscle knots out but it was so painful she decided to use the ultrasound machine first. It’s so weird you just feel this probe going over your neck, sides and back of your neck and then when she massages them the muscles are much looser and nowhere near as painful. I know that the muscle knots need to be removed but it is a painful process, the feeling after they have gone is sublime as you feel freer and can move more easily. 

By the end of the session I could feel the muscles were a lot looser and more relaxed than when I had started the session. However in the hours since the pain has started. It’s not horrific but I do feel battered and bruised. The weirdest thing is I have a lot of rib pain this evening. I am not sure if that’s because I spent a lot of the session lying on my front or if my back muscles are going spasm ( but a much milder version than normal).

I turned up to today’s appointment with my left arm burning with pins and needles in my hands. I left the session with both of those gone and they haven’t returned in the 4 hours since I have been home. To me that is a massive improvement as since July I haven’t had a day without constant pins and needles. 

My physio says it’s going to be a few sessions of ultrasound and massage before I can start having more traditional physio. My next session is the 19th December. 

I am absolutely shattered after today’s session, I had a busy day yesterday with getting my hair done and seeing a friend. If I could I would have stayed in bed all day. I am just hoping I can sleep tonight rather than what usually happens where the adrenaline starts to flow and I am tired but wired all night!