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.

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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!

Human Barometer

We often joke in the EDS community that we are the human equivalents of Barometers. Any sudden changes in air pressure and you’ll find us suffering with a myriad of problems such as migraines, excessive joint subluxations (partial dislocations), dislocations, joint and muscle pain. This week I feel like I have had them all.

 

Monday started with a bang, I felt like someone had smashed me in the face with a shovel. This lead to me spending most of the morning lying in a darkened room. Until I suddenly had a brain wave and decided to see if putting a soft neck collar on would help at all. I have always held a deep suspicion that my migraines are triggered by my neck being hypermobile, I get a lot of pain and stiffness in my neck overnight. I always wake up with a migraine, very rarely do they start when I am up and about during the day. Within minutes of putting the collar on my head pain had reduced by half. Within two hours I was pain free but exhausted and still feeling sick. However anything was better than having the head pain.

Tuesday started on waking with a gnawing pain in my coccyx – right between my bum cheeks to be honest, hence why there are no photos! I have had massive problems with my coccyx this year after slipping on the snow and ice back in March. At the time I was much more worried about my head as I managed to crack it on the back door step. The lasting injury has been to my coccyx, which has resulted in me having to buy special cushions to sit on and to lie down in the lounge whenever I can to take the pressure off. I’ve lost 2 ½ stone over the year and you’d think that my joint pain would be getting easier but it isn’t. The coccyx pain is very uncomfortable, Tuesday it joined in with severe lower back pain which lead to me giving up and going to bed a 4pm. Only after applying my Tens machine for 4 hours did I have any notion of relief. It really was exceptionally painful and made me feel sick. No matter what pain medications I took the pain remained causing my buttocks and the backs of my thighs to spasm. I will be honest I really didn’t know what on earth to do with myself. It wasn’t even particularly stormy here yesterday just a bit gusty but obviously the weather and the air pressure were drastically different to the stable weather – but way too hot in the summer.

 

Today (Wednesday) the UK is being battered by another storm and my body feels like it spent the night being battered by a shovel. Since waking various parts of my body have been covered with a hot water bottles, with very little effect other than to make me sweat a lot as despite the fact the weather is very windy outside the temperature is very warm.My body is overheating constantly at the moment which is leading to me dripping with sweat at the drop of a hat. Either that or I have hot the menopause! So what hurts today? Today as most days I have pain in my lower spine and coccyx, my fingers are swollen, stiff and sore. My ribs feel like someone decided to attack me with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a 

with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a piece of 2 by 4 ( wood ). Other than that, I am groggy as hell with the constant waking up last night to take more pain relief. This is not a good day but I have been expecting a run of bad days after having a reasonable week last week. It’s the way it goes plus add in a few storms and my body reacts badly to the change in air pressure.

 

 

I forgot to mention that my shoulders are slipping in and out of  their sockets, making a terrific crunching sound as they do. Today nothing other than just surviving will be done. When I say just surviving I mean lying on the sofa hoping at some point the pain relief I have taken kicks in. There will be no enjoying myself, doing things that I like to do. It will be a case of just riding it out. That’s the way this chronic illness lark works. I may have a run of a few good days but they will be followed by several if not more bad. Which is why when its good ( when I say good I mean better than a bad day) I tend to cram as much in as I can.

I’m sick of this pain, especially when it’s like this and no painkillers touch it. It’s not a pain where you scream and shout it’s a nonstop constant bone gnawing pain that escalates as the day progresses. Sometimes it takes my breath away, it makes me miserable and snappy. I hate the way it can completely change my personality from laid back and kind to nasty and angry at the world. Unfortunately those closest to me bear the brunt of it, with me losing my temper very easily. A technique I have learnt to avoid me lashing out is to just go quiet and not speak. That way I can be horrible to those I love the most.

 

Thursday brings more storms and a trip to see my hospital consultant which is more than an hour away by car. It’s a crack of dawn appointment as well so 90 minutes after this blog post is published I will be on the road. I will have had to get up at around 4am so that I can pace myself whilst getting washed and dressed. I am not looking forward to using my wheelchair as sitting upright at the moment is so painful, added in the 2 hour car journey (there and back) and I will be wracked with pain….again.

I do have a lot to discuss with my consultant, I haven’t seen him since March, it’s a necessary evil – he’s not evil he’s lovely, just the journey is torturous. I have developed numerous issues since I saw him last and I need to get to the bottom of them. One of them is the possibility that I have got Sjogren’s Syndrome ( I have had dry eyes for years but the eye drops are no longer working, my mouth is dry so I am getting numerous cavities and my tongue is sticking to the roof of my mouth when I talk). I need this to be looked at as my eyes are just so painful and with my pathological hatred of the Dentist I need the cavities to stop.More information on Sjogrens syndrome here.

This is such a down beat post and for that I am sorry. I had such a lovely week last week seeing friends and managing to make some bits and pieces.

 

The Christmas wreaths had been half made since August so I managed to finish those by adding hanging loops and bows.

 

I also made a number of Travis bags.

My first gifted quilt

Many of you who follow me on various social media platforms will know that my mum has been quite poorly. It’s actually a massive understatement for what she has been through. She’s had a major operation that will take months to recover from. The stress of being so far away from my mum and too sick to travel impacted my health a lot over the summer. So as soon as I could take a breath and think straight I decided I was going to make her a very special gift for her birthday in September.

 

I was very lucky that a friend on Instagram gifted me a pattern for a quilt, which I had seen her make and loved. It was 4 pussy cats, spread over 4 separate panels, making it a lap quilt. The cats were made by using applique and then sewing over the raw edges. Initially when I decided to make the quilt I was going to use fabric from my stash but whilst I was mulling over the quilt in my mind I decided I wanted to buy some material for the cats. I knew I wanted muted colours rather than bright colours. I had also had the last of one of my subscription boxes, I was unimpressed with the project contained within so I decided I would use the floral fabric charm pack ( 5 inch squares ) in conjunction with the polka dot fabric I purchased. The white background fabric was bought earlier on in the year during the sales. I had no plans for it and decided this would be superb for what I wanted to do. The pattern was discreet enough that it wouldn’t fight with the fabric I wanted to use for the cats which I wanted to be centre stage.

 

I’ve not done much applique before so I was a bit stressed about it. To be honest everything was stressing me out when I started this quilt. My brain was just fixating on anything it could to worry about. I made the first two cats and immediately fell in love with them.

 

 

 

Both cats had been fiddly to do and although I loved them both, I decided to do what I always do which is make it up as I go along. When I had last seen my mum she had been in awe of the free motion embroidery I had done on a cushion.

 

 

I decided instead of having 4 cats on the lap quilt, I would have two cats and two mice, as I knew how much my mum had loved the mouse on the cushion. This also meant that the lap quilt would be completely unique with it being a mash-up of two different designs.

 

 

The above photo shows the 4 panels that have the applique designs on them. These were created using bondaweb, which is a fusible webbing. It’s very fine material that is a glue. On one side you have paper and on the other side is a rough surface which has glue on it. To begin you trace out your design onto the paper side of the bondaweb. Then using a dry iron you stick your traced shapes to the wrong side of your fabric. You then cut your fabric shapes out, then remove the paper ( I use a pin to score it as it makes it easier to remove). You then position the shapes how you want them to appear on your background fabric. Using a damp cloth and a steam iron you apply heat to the fabric to bond it to the background fabric. This is raw edge applique, as you haven’t turned the edges over, so the raw edges are exposed. To prevent fraying you then sew over the edges.

 

 

 

 

For the mice I used a different technique, which is called free motion embroidery. This is where you drop the feed dogs ( these are the things that pull the material under the presser foot as you sew), I also have a special bobbin case for my Janome Atelier 5 ( blue dot bobbin case) which has a lower tension on it. It makes the world of difference when doing free motion quilting or embroidery. I also attach the darning / embroidery foot which is a closed toe. I haven’t done much free motion quilting, I really need to make up some quilt sandwiches and just have a play but I’ve done a couple of pieces of free motion embroidery. The free motion embroidery gives the applique an outline and it also makes it look like you have drawn the edges on. I love the way it looks and the fact that it doesn’t have to be brilliantly accurate as its supposed to look a bit messy!

 

 

After I had completed the 4 panels, I made my patchwork backing for the quilt. I wanted the quilt to be as beautiful on the back as it was on the front and in effect be reversible. I used my charm squares for this and added in some squares of the background fabric so it tied it to the front of the quilt. Using precut fabrics speeds things up, as you can literally just sit and sew. Things come together very quickly. I was extremely lucky with the finished size of the back panel as it was a complete guess. As at the time of putting this together I hadn’t decided how big my borders were going to be that would join the 4 panels together.

 

 

I decided to use the backing fabric from the panels as part of the sashing joining the panels together. I also used some of the fabric that I had made the cats and mice out of to tie all the fabrics together. I settled on 1 ½ inch strips of fabric, sewn together with a ¼ inch seam allowance. Thankfully earlier on this year I bought a creative grids stripology ruler, which means cutting strips is an absolute doddle. Cutting that would normally have taken me hours and lots of ruined fabric – because I can’t cut straight or measure accurately for toffee, now takes a matter of minutes. I can’t tell you how much I love these rulers, they’ve made my life so much easier! I used a 3.5 strip to make the outside border.

 

 

I then freaked out for a few days over how I was going to quilt this. I couldn’t decide if I was going to leave the applique panels unquilted and only quilt the borders. Or if I was going to quilt the applique panels how would I do it without distracting from the applique. I won’t lie it gave me a sleepless night or two. This was an important present, that had significant meaning for me. It was important that I got this right because once I started there would be no going back. Thanks to Instagram and all the quilters I follow my deliberations over the applique patterns were brought to an end when I saw how someone else had quilted their work with just straight lines about an inch apart but not going through the applique. It would be tricky as each time I started a new section would mean bringing the bobbin thread up, something I hadn’t had to do for ages as my new machine means I don’t have to do this. By bringing the bobbin thread up it meant I would avoid a nesting of threads on the back of the quilt, when a locking stitch was used. Although it’s not perfect I used a few small stitches forward and back to secure my threads. I am not advanced enough at the moment for burying threads and due to when my mums birthday was I didn’t have lots of time to master a completely new technique.

 

Quilting took a few hours and a lot of back, arm and shoulder pain from terribly bad posture.

 

 

 

 

To finish off the quilt the raw edges of the material needed to be bound, if you didn’t do this the material would fray and the wadding / batting would be lost from the quilt. I made the binding using a fat quarter from the polka dot material I bought. I used my stripology ruler and cut 2.5 inch strips and then joined them together.

 

The raw edges of the binding and the raw edges of the quilt are lined up and then I used the sewing machine to sew the binding onto the front of the quilt. I had an absolute nightmare with the binding. After sewing it on I had to unpick it as I had sewn too far over and not left myself enough binding  to pull over to the reverse of the quilt. It took me over an hour to unpick. I was also having a disastrous time with mitred corners. So I have done the best I can. Once I was “happy” with how the binding was sewn onto the front I then settled down for a few hours of slow sewing whilst I ladder stitched the binding onto the back.

 

This process took ages as the polka dot material was quite thick. I have ended up with blister’s on my thumb, forefinger and middle finger. There is also a bit of my DNA in the quilt as I lost count how many times I stabbed myself! Finally the quilt was finished.

The very last job left to do was to sew the label onto the quilt. This was a personal message to my mum, so I won’t be sharing. However it also covers who it was quilted by, on what date and what the design is called. I have named it Cat & Mouse.

It’s quite exhilarating finishing a quilt but it can also leave you feeling a little flat. You are overjoyed at what you have accomplished but for me I have lost that drive of what I have to achieve for the day. I really hope my mum likes it.

update:

It was gifted to her on 1st September and she was thrilled to bits with it.

 

 

Misunderstood

 

One of the things that has always wound me up since becoming chronically sick due to a myriad of medical conditions is the complete lack of understanding from about the conditions or the way they can make me feel. Despite Fatigue being a symptom of PoTs (postural orthostatic tachycardia syndrome) and EDS ( Ehlers Danlos Syndrome) medical professionals seem really surprised when you tell them you are knackered 100% of the time, no matter how well you slept. If the people who are supposed to get it, you know the experts fail to comprehend that you are dealing with levels of exhaustion they can only imagine, then what help is there for the non medical people in your life?

 

A few years ago I really lost my shit with someone who should have known better, they asked me how I was and I said I was really tired. Without thinking they said “yeah I am really tired too”.

“ No I mean I am really f**king tired, like I feel like I am walking around in a dream” I snapped.

“Yeah I get that when I don’t sleep well” They replied

I am not ashamed to admit that I really lost my temper as at this point I was in a cycle where I didn’t have more than 2 hours sleep a night for three nights and on the 4th I was sleeping 12-16 hours but waking up still feeling drained. I was hallucinating on the third day due to the level of tiredness I was experiencing. I had discussed this frequently with the person in question, they were not unaware of the difficulties I was experiencing on the sleep front. Yet even with all the information in front of them they couldn’t connect up the dots that going without sleep for nights on end didn’t just leave me tired, they left me barely functioning. It left me feeling as though a) this person had never actually listened to me when I was talking to them or b) that they didn’t believe me when I said how little sleep I was getting or c) they actually didn’t give a shit, I was always moaning I was tired. Any one of those scenarios is not one that leaves you feeling good about yourself.

 

After losing it with them and having to educate them in the difference between my tired – it doesn’t matter how much I sleep I am always feeling fatigued / wiped out and their tired, if they have a decent night’s sleep they feel refreshed, they never tried to claim that they felt tired in the same way I did again. Now don’t misinterpret me, I am not saying my tired is special or I am the only one in the world who feels like this. Ask most people with a chronic health condition / illness / disease and they will tell you the same, that sleep no longer leaves them feeling refreshed. Yet so many people in the medical profession will deny fatigue is caused by a person’s current illness / condition and will offer another label such as chronic fatigue syndrome – that’s a rant for another day!

 

I’ve noticed now the CSF leak is back how very few people actually understand it, I am talking close personal friends who witnessed how sick I was in 2016. So I am struggling to understand why they don’t remember that I have to lie down when the pain strikes etc. It is deeply frustrating but maybe I am expecting too much of them? Am I falling into the trap of believing that I am so important that they should remember this? I am also shocked by the number of people who have said things like

“ Oh that’s such a shame after you’d healed as well”.

Whilst I have said I have self healed I have also been careful to state it was to an extent, it had never gone away completely. I was able to spend many more hours upright but by the end of the day I was getting positional headaches that would only be relieved by lying down. I would also get photophobic at the end of the day, bright lights from screens including the TV would feel like they were burning a hole in the backs of my eyes. So whilst I was aware things had vastly improved for me, I was also aware that I was still leaking just at a much more slow rate.

 

I’ve also been really clear to those around me that it was highly likely that the symptoms of a full-blown leak would come back. The leak was probably caused by me having EDS,  as I have a weakness in the dura due to a previous lumbar puncture ( the protective covering around the spinal cord and brain) there would always be a weakness. So it’s frustrating when people question that the leak has returned – like the gp did last week. There is no mistaking a leak headache once you’ve had it. It is a pain like no other, it’s the only head pain that makes me clutch my head. I also get stupid comments from people like

“oh when I get a bad headache I soldier on because I have to. Not everyone can just go to bed because their head hurts”.

That’s when you know that person isn’t experiencing a CSF Leak headache because I will be blunt there is no fucking choice with a leak headache. You know when you see medical dramas and people collapse to the floor in pain, that’s what a leak headache is like. It hits you like you been attacked on the back of a head with a shovel. It makes you drop to your knees, if I could cry with the pain I would but when it strikes I am unable to do anything because it literally takes my breath away.

 

Somedays I am lucky and I can manage a few hours upright before I have to lie down. Other days I am upright for minutes and then I have to lie down. It is not a lifestyle choice it is the only way I can survive. It’s still not currently as bad as it was in 2016 and I am determined not to let it get that bad. Before I would push through until I was at the point of collapse. Now once the head pain starts I lie down, yes it’s frustrating but I’d rather lie down immediately than keep pushing to the point where I am bed bound for days on end. The only thing that works for a lot of people with a leak is lying flat however there are those who have leaked for so long that lying flat no longer reduces the pain that they are in.

 

Painkillers just don’t work on this headache, nothing I have ever taken has ever stopped the headache and that is the same for almost everyone with a leak. You get relief when lying flat when you have a leak because the fluid is no longer fighting gravity to be circulated around your spinal column and brain. By lying flat you increase the level of fluid surrounding the brain, which is what provides the pain relief.  Somedays within 30 minutes of lying flat the pain is gone other days it can take several hours and I am still left with a headache. However once upright again the headache will return. Obviously life spent flat on your back is not very fulfilling, its reduced the amount of sewing I can do as not only does the leak cause me pain this time it is affecting my vision. Its giving me quite a bit of double vision / blurred vision. I am having to use a magnifying glass and my reading glasses to be able to thread needles ( that is whilst using a needle threader both on my machine and when I hand sew). It makes things so much slower but I have to keep my hand in because without sewing I would be lost completely.

 

I have managed to make  a few bits, quite a bit was completed before the leak started and some of it has been completed in snatched moments when the levels of head pain are low / manageable. I have been able to finish items by hand whilst lying down so that’s a bonus. So here are some photos of what I have been making lately

 

I’ve been making a lot of baby bibs, some have been gifts and others have been paid to make.

 

 

Cushion cover made before the leak started – 

Travis bag for my Instagram Friend

 

I also made some voodoo dolls for a bit of a laugh, I never thought in a million years that people would want them but my (twisted) friends have gone crazy for them. Thankfully they all know how poorly I am at the moment and don’t expect me to rush to get things done. One of these is making its way to the USA as we speak. It’s my very first item that has gone to the USA.

 

So I still managing to do some sewing, it’s not as much as I would like but it’s enough to keep me sane at the moment.

 

My week

 

Over the last week I have been quite unwell, culminating in an emergency appointment at the doctors surgery yesterday. As is usual for me it wasn’t clear what exactly was wrong. I had severe abdominal pain in the lower right quadrant – I’m no stranger to abdominal pain, I have suffered with it for as long as I can remember. I can remember countless home visits by the gp where I was yet again diagnosed with a grumbling appendix.

 

I don’t think what I had yesterday was my appendix – its still sore today ( just not as bad). I think it is actually a cyst on my ovary, the doctors found one in 2015 but as it was only 2cm in size the protocol was not to monitor it. For years every few months I would get a pain in my lower right side. Loads of times I was convinced it was my appendix but after they found the cyst I realised that this made more sense. I started to track when I had the pain, it was always between the 20th to the 28th of each month and would last a few days. However over the last six months every two or so months the pain ramps up. I have a reasonably high pain threshold and it takes a lot to make me go to see the dr, let alone ring them up and demand an appointment. Normally I’m the patient running in the opposite direction.

 

Yesterday I couldn’t stand up straight when it was at its worst and when I was on the phone to the duty doctor I was curled up in a ball on the bed. I didn’t just have pain on the right side but the whole of my insides felt sore and were burning.  Thankfully the duty doctor agreed that I did need to be seen and set an appointment for an hour later. Thankfully Mr Myasthenia Kid was day off so he could drop me down there. I also had a pot to piss in ( ha ha ha ha!) my old gp used to give me a sample pot to use when I suspected I had a UTI. I forgot yesterday to ask for another one to replace it.

 

By the time I got to the doctors appointment the pain was already decreasing. I felt a bit of a fraud to be honest. Whilst I am typing the pain is ramping up again, I’ve taken pain killers so hopefully it will settle it again. I haven’t got a temperature and today I am not feeling unwell. I don’t feel right – I think all of us with a chronic illness or condition know when our bodies aren’t feeling right. Mine hasn’t felt right for a few weeks, initially I put it down to anxiety, stress, then the heat. But I know in my heart of hearts it’s more than that. It’s like the time I kept telling my old hospital consultant that I felt terribly unwell, I didn’t know what it was but he needed to listen to me. The arrogant twat didn’t, he sent me reluctantly for blood tests. Five days later I got a snotty letter telling me all my bloods were normal. Three days after that letter he had to backtrack because my prolactin levels were stupidly high. See I knew that something was wrong, never ignore your instinct about your health.

 

My urine was dipped and nothing was showing. I then had to get up on the couch and be examined. I knew it was coming, I made sure that front and back bottoms were scrupulously clean as I feared gloved fingers could be inserted into either orifice. Luckily I avoided that one! My stomach was palpated, as is usual the doctors always ask about the scar on my stomach. I’ve had a scar on my stomach since I was 3 and a bit. It’s been there so long that unless someone draws my attention to it I don’t remember it’s there. Now that will probably seem strange as it’s a horrific looking thing all thanks to EDS.

 

If I wasn’t such a lard-arse at the moment I may have taken a photo to show you. The scar runs from around an inch above my belly button to the top my pubic bone. It has healed very wide around an inch or more at the worst places and the skin is paper thin. I also have no sensation / feeling at all in my stomach about 2 inches either side of the scar as the nerves were cut ( I have had multiple surgeries). It’s caused me problems in the past due to burns. A few times I have ended up seeking hospital treatment as I have given myself a serious burn injury and not noticed until the skin has gone black. Like I said I have no feeling there.

 

The scar has also tethered at the end near my pubic bone. This means the scar tissue has adhered to the muscle underneath. It causes me no pain but means my stomach is divided into two parts due to the tethering.

 

I showed the doctor on my abdomen where the pain was, she felt it and I had to be peeled off the ceiling. At this point she told me that she wanted to ring the surgical team at the local hospital for advice as she felt it could be my appendix or it could be an ovarian cyst torsion ( meaning the ovary was twisting because of the cyst). Personally I thought with both I’d be in more pain than I was. I declined the call to the surgical team basically because I hate the local hospital. If I had been in severe pain, vomiting etc obviously I would have gone, I’m not an idiot. But I knew what would happen, lots of tests, no sleep, idiot medical professionals and sent home after being made to feel like a time waster. At this point all I wanted was my bed.

 

I made the doctor a solemn promise that should the pain intensify overnight that I would ring 999 and if it was bad tomorrow (now today) I’d ring them. She wasn’t totally happy but she knew I wasn’t going to hospital. I have to add here that even in that severe amount of pain my blood pressure reached the dizzying heights of 115/80 with a pulse of 95, oxygen 98%. When my blood pressure is normal ( doesn’t happen very often these days) when in pain I am normally in the 130/90 territory. So that just goes to show you how low my blood pressure has been of late.

Its not desperately low but I am 5ft 8 tall and not petite. Most doctors take my blood pressure and you can see that they are looking forward to giving me a lecture about my weight and high blood pressure. You can see the disappointment in their eyes when it comes back low! If my blood pressure is below around 115/80 I can be hideously symptomatic, every time I stand up I feel faint. This week I have been drinking expresso’s as it’s the only thing that gives my blood pressure a boost, even if it is only temporarily.

Around 2.30pm the doctor I saw yesterday rang to check how I was. That was really kind of her but I feel guilty for making her worry. It wasn’t a quick call either, she had a huge list of questions to ask to ensure I wasn’t brushing her off and telling her what I thought she wanted to hear. This is why I love the small practice I use as they have the time to care about their patients, it doesn’t feel like a conveyor belt. If you need longer than your allotted time then you get it and none of the other patients mind as they also know they won’t be rushed out the door.

 

My plan is when feeling slightly better that I will make a doctors appointment and ask to have this pain investigated. Personally I wouldn’t be surprised if my ovary is stuck to my appendix due to all the adhesions I have.  

 

I’ve been so rough over the last week or so I haven’t done very much in the way of sewing. I tried some hand sewing yesterday but couldn’t concentrate so gave up. Today I finished a Travis bag for one of my Instagram friends. Thankfully that was a quick bit of sewing as I had started it well over a week ago. I can’t put a photo up as she hasn’t received it yet. Jamie will be sending it tomorrow for me. The lovely lady and I have chatted a few times on IG and she asked me if she could send me one of her bags and give her an honest critique of her work, which is a bloody brave thing to do. The bag would be mine to keep. I couldn’t let her just send me a bag, as I knew she had a dog I thought I would send her a Travis bag.

 

This is the bag she sent me,

 

I absolutely love this bag. The quilting is amazing, she’s also used variegated thread so it goes dark and light which emphasises the quilting beautifully. I only wish that I could quilt as accurately as this!

Lifes a bit shit at the moment

Life’s a bit shit at the moment, I find quite often it goes like that. You can be on top of the world one day and thanking your lucky stars about how sweet things are and then the universe finds out and pulls the rug out from underneath you.

 

I am normally quite honest with my readers but this is stuff I can’t and won’t discuss for the time being. Rest assured hubby and I are fine as are our babies ( Mollie and Frankie). Its stuff outside us our little bubble that is impacting us. Its having a massive impact on my mental health as in my anxiety has spiralled out of control again, I feel constantly that I am on the verge of a panic attack if I am not 100% distracted.

 

I hate holding stuff back as I like to think above all else I am honest with you but it’s not my story or my life. The people in my bigger circle deserve their privacy and I will always respect that.

 

On top of this the heat has suddenly got to me. I can’t move without palpitations, I am feeling faint and generally exhausted. I would be very happy for a few cooler days just to give my body a rest and get things on a more even keel.

 

Due to everything that is going on at the moment not a lot of sewing has taken place. I have lost a bit of my sewjo, I have managed to get three bags started for friends and hopefully they will be completed this week. I just need the space and time to be able to do this, thankfully they are all very understanding and know that I can’t work to tight deadlines as I never know when my health will let me down. The mind is willing the body says nah!

 

I have decided to name my little dog walking pouches The Travis Bag,  after our first Weimaraner, who brought such love and joy to our lives. He loved his walks so I think it’s apt that these bags are named after him.