Recovery is dragging

I wrote last week about the consequences of going out and I clearly didn’t have a clue how bad things would be as I am still suffering after my day trip. I think maybe it is just rotten timing that ever since I have been feeling very tired and run down. This last Monday I ended up with a hideous migraine that knocked me flat on my back for over 12 hours and had Mr Myasthenia Kid have to come home from work to look after me. I am glad I am out the other side of that but it has shocked me how battered and bruised I am still feeling for having a few hours out of the house.

I am guessing having a solid six hour block of socialising, driving a scooter and having to use a lot of brain / muscle power probably wasn’t the best idea. The longest I am normally out for is probably 90 minutes at an absolute push and that will leave me more exhausted for normal for up to two days after. My days when I don’t leave the house are in cycles of rest and activity. I have to pace myself or I end up paying for it. It hasn’t helped that there have been appointments that I have been unable to not attend – ringing up and explaining to the receptionist that you need to re-book because you are shattered never goes down well. There isn’t really a word in the English language that accurately conveys the level of exhaustion because we overuse words like fatigue, shattered, tired etc. For me it gets to the point where I can feel like I am having an out if body experience or that I am dreadfully hungover combined with feeling so utterly exhausted it can be really hard to motivate myself to move. 

I have been on my embroidery machine and sewing machine a lot as I am making Christmas gifts for friends and family. I know it is only October but I get panicky if things aren’t made and then I start to feel stressed which means I no longer enjoy making the items. At the moment I have been limited to an hour or two a day, which doesn’t help me get loads done but it is the longest I can sit without the pain becoming so intense that I have to lie down the rest of the day or concentrate for. Obviously on the embroidery machine when it is stitching out I don’t have to concentrate on anything but I do need to be switched on enough to know what step comes next as for the first time I have been using the embroidery machine to do applique and I am really enjoying it.

I know I should have taken it easier last week but even after 12 years I think I can push it and there will be no consequences. I never ever learn. Maybe I simply refuse to.

This week my body has just thrown a hissy fit and ensured that I can’t carry on ignoring it when it sends out distress signals. Every bloody condition I have is flaring out of nowhere – Hidradenitis Suppurativa two abscesses after at least a month to 6 weeks without anything, Arthritis hands as stiff as can be, Nerve Pain left leg is burning which it hasn’t done in years, Tinnitus (so loud I am struggling to hear anything else) Migraine and now a headache every day since, nausea, IBS, adhesion pain, Muscle Spasms in my back and feet you can always guarantee will make me swear like a sailor literally everything is kicking off at the moment. I always find pain adds considerably to the fatigue. 

This isn’t a woe is me post or an attempt for sympathy, I am just explaining how things are at the moment and why at the moment I am struggling to come up with dynamic or scintillating posts. I am finding it hard enough to follow a conversation let alone put an intelligent blog post into words.

I do count my blessings though, Dembe is my hero. On Monday when I was so sick with my migraine he wouldn’t leave my side at all. I thank my lucky stars I have him as even on the days when I am really suffering and thank goodness they are few and far between he is stuck to me like glue and always makes me smile.

So I promise to attempt to be kinder to myself over the next week and get back on an even keel.

Drained

Well the clock has run down and I still have no clue what to write this blog post about. Last week I was full of energy but this week I feel like the batteries have been removed and I have been left discarded in the middle of the playroom. I have had two very restless nights on the bounce, a physio session yesterday and I am drained. It isn’t very often I feel this fatigued but I am even struggling to ignore the siren call of my bed presently.

I am wondering if it is a combination of being back on antibiotics again, courtesy of a HS flare up. A mild virus, I have a bit of a cough / sore throat but it really isn’t anything major, more of a mildly irritating tickle but feels like it did in the bad old days when it would go into Bronchitis. Of course being two years smoke free ( I gave up smoking on 6th August 2017 and haven’t touched them since) I had hoped I might avoid a chest infection, especially as I am now taking zinc daily. With the change of the season, the air is getting fresher so my joints have thrown a hissy fit. Every day this week I have spent sat on my heated throw attempting to combat my joint pain with heat rather pain medication. My fingers are really bloody painful (including my thumbs), costochondritis has flared up, my right hip is painful, piriformis syndrome is rearing its ugly head and I keep getting a spasm in the right-hand-side of my back. I feel like I should really just dip myself in a vat of Ultrasound gel and have done with it. Every night I am spending around an hour giving myself an ultrasound treatment on various parts of my body. That in itself is draining but lowering the pain levels. This probably sounds like a huge moan. It isn’t I am just stating the facts. I put on a good show but I am exhausted by it all.

It is deeply frustrating when my only desire is to be creative and I can’t motivate myself to do it or the pain won’t let me sit at my machines for longer than a few moments. I did manage to get a couple of bits done last week. For the first time I made patches out of my embroidery work and attached them to make up bags. I found the pattern on line but adapted it due to increasing the size by 10% and adding zip tabs to give it a better finish. 

I made these two for friends who are both going through an awful time. It is also part of me paying forward after receiving a massive parcel of fabric from a lovely lady called Beverley on Instagram. She has been supportive of my sewing and embroidery from day one – she sells stuff online and her work is amazing. She always is full of praise for my work, which makes me blush as I am so hyper critical. Both bags were made from the fabric she sent me, as will a couple more, that will be Christmas and birthday presents. 

I am itching to get started on working on these items but everything feels like lead. Maybe later on I will start to feel a bit better and I will be able to do some embroidery. I make the patches first, deciding on a design for each person, before then deciding on the fabric within my expanding stash that goes with it best. For the Lurcher bag I chose the blue leaf fabric because it went so nicely with the scarf on the dog. With the fox bag I chose the white and green as I felt it looked like sunlight through leaves and you were peering through the undergrowth and came across the fox. Sounds a bit whimsical but that is exactly how I work and I make no apologies for that. That’s why I get so fed up when I feel so drained that I just can’t work on a project. I know there is plenty of time but there are just so many things I want to do.

When I can’t sew or embroider I spend a lot of my time looking at projects for the future. My whole life revolves around sewing / quilting / embroidery and I love it. I have never felt so creatively fulfilled.  Which is why it is so frustrating when I can’t actively do stuff. I am lucky that I can do it, so I really don’t want this to sound like I am moaning. Although thinking about it I am fully entitled to. I can’t see many of my “well” friends coping with the amount of shit I have had thrown at me over the last 12 years. I have had several of them tell me they couldn’t live like I do and that they would rather top themselves. I think, they believe that is a compliment but all I hear is that they believe the quality of life I have is shit and nothing could be further from the truth. As others have said long before me, “life is what you make it”. You carve out tiny pieces that fulfil you whenever and wherever you can.

I have noticed after the last two Physiotherapy sessions that it is taking me longer to recoup the energy expended by attending. So that on top of everything else is probably what has caused me to be knocked on my arse. I know this state if fatigue is more than likely temporary and I just have to ride it out. I am currently just drained.

Scrap-busting sew along complete

As Jay is on holiday this week and we have stuff planned for everyday this will just be a quick one.

A while ago I wrote a blog post  Scrapbusting   in which I told you about a sewing challenge that I had joined. This was what is known as a sew along and the challenge was to make a quilt out of scrap fabric. I had never joined a sew along before as I never believed that I was good enough to take part. This challenge has totally changed my mind and I am so glad that I took the plunge.

I finished my quilt on Friday afternoon, at some points it felt like it would never be finished. The quilting was exhausting, as I had chosen to do a hexagonal design , which meant getting a very large quilt through a domestic machine on multiple occasions. Also getting the quilt sandwich together was a monumental task. The lounge had to be cleared of furniture so I had the room to lie the quilt flat on the floor. A quilt sandwich for the uninitiated is quilt top + batting / wadding + quilt back. All the layers have to be smooth so that when you are quilting it, you don’t end up with lots of puckers. Of course I had my very own helper.

When I say helper I mean that in the loosest possible way. 

It took me around several days to complete the quilting. I had to take a week off after I started as I had my second corneal abrasion ( it was the second in 4 weeks this time I managed to scratch in a line above the pupil and I am fighting to get a referral to ophthalmology but that sorry tale is for another day).  The abrasion healed quickly but my eye was full of gunky ointment as it was so dry.

Whilst quilting I did wonder what on earth had possessed me to do such a complicated design but I was throwing caution to the wind and trying out new things. I managed to get the binding on in a day because I machine bind. I find using a needle and thread quite difficult so it is the only way for me to finish a quilt. The quilt police will be having a field day but I really don’t care. I have to do what suits me and what allows me to complete a quilt, not what the quilt police want.

It is the largest quilt I have worked on coming in at 54 inches by 77 inches. I am very happy I have finished it as I was starting to get a bit bored as I was itching to start new projects.

I made my quilt label on my embroidery machine. I managed to get it sewn on yesterday but it was slow painful going. I really need some new hand sewing needles as I only have inbetweens which are tiny and a nightmare for me to work with my fingers decide to be uncooperative.

We are using the throw over the back of the large sofa as it fits it beautifully. Plus it won’t be subjected to Dembe’s nails there as the one on the small sofa is constant attack as he had decided the lounge window sill is now his. 

 

 

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.