A hard week health-wise

The last week has been really hard health wise. I haven’t been the sickest I have ever been but I have certainly been sicker than I have for a while. There is no “reason” that I can identify for this other than perhaps the decline in my health that I have been waiting for since we lost Mollie and Frankie. Stress, emotional upset and change can all upset my chronic health conditions and it seems everything wanted to bubble to the surface last week. I did just power on through which now I am wondering if that was the right thing because I am having more and more MG like symptoms this week – shortness of breath, limb weakness etc sorry I should have said my idiopathic hemifacial spasm the latest bullshit diagnosis for my Ptosis, totally ignoring all the other issues.

If I am honest there is only one symptom that has me terrified and that is when I will suddenly and for no reason lose the ability to take a deep breath. No matter how hard I try to suck the air in my chest fails to move. I end up taking a series of short breaths to minimise the panic that rises in me. I have an elephant sat on my chest who is refusing to budge and I know that if I went to hospital my breathing would be ignored and I would be labelled with a mental health condition rather than the fact that there is something going on at the neuromuscular junction which has been proved time and time again with the ice-pack test. Apparently for the latest neurologist I have seen for these symptoms back in 2017 I believe, it is just a placebo effect. Words fail me.

Sunday freaked me out a bit as well. I wasn’t feeling great when I got up and knew there were a couple of jobs that I had to do, then I could sit around and rest for the remainder of the day. Once those jobs were completed I noticed my legs had become exceptionally heavy, like there were lead weights attached. I could walk but it was very slow and shuffling because lifting my feet was taking a supreme effort. I attempted to climb the stairs but that was impossible. I may as well have been sat at base camp for Mount Everest without oxygen, as those stairs were impossible. After attempting three I came back down on my bum and then wondered how the hell I was going to stand up again. Thank god for Mr Myasthenia Kid being home and with it happening on a Sunday. He could help me to my feet and get me to the sofa, plus organise my medication. 

You see I get to take Mestinon / Pyridostigmine Bromide for my PoTs symptoms. I usually dose as follows 7am 60mg, 11am 30mg, 3pm 30mg or 60mg depending on how I am feeling and then 30mg at 7pm. I have to be careful with Mestinon by body is extremely sensitive to it. Too much and I can be twitching all over but mainly my face and it can trigger terrible stomach cramps. It takes a lot for me to take another 60mg during the day but at both 11am and 3pm I ended up taking the full dose because without it my legs wouldn’t work. My legs not working is not a PoTs symptom, it isn’t an EDS symptom either. There is no medical explanation for this symptom, other than the fact the medical profession believe its all in my head. Which is why when my breathing gets difficult I panic. This medical condition that appears so much like MG / Neuromuscular junction disease will be ignored and it could end up killing me. I am lucky, my symptoms are mild but I have bouts like this especially when the weather gets warmer where my body fails to cope. I worry one day I will be so ill that the doctors refusal to think outside the box will mean that I will be killed by medical negligence and that is a fucking scary thought.

I mean if there is nothing wrong with my breathing……why have I had home oxygen since 2009? In the current economic climate of ongoing austerity since 2010 why if I don’t need support for breathing on occasion why has this precious money wasting resource not been taken from me? Home Oxygen can’t be cheap,  I have an oxygen concentrator a machine that pulls oxygen from the air and then feeds it down a nasal cannula at a purer form. In case of power cuts I also have to have a huge oxygen canister in the house, I have to notify the local fire-brigade and I am classed as a vulnerable service user by the people who maintain the power grid. The canister also impacts my home insurance cost. If I didn’t need it I would get rid of it, not only are the canister and oxygen concentrator ugly they are taking up valuable space in my small home. So in an age of cuts to all services who is covering their arse by allowing me to keep my home oxygen? 

Home Oxygen won’t save me if I end up in a full blown Myasthenic crisis. This is where the muscles around the lungs and the diaphragm become paralysed and can’t move so you can’t get the air in as when you attempt to breath nothing happens. In this situation you need to be in hospital on C-pap or Bi-pap or in the worst case scenario put into an induced coma whilst they ventilate you – sticking a tube down your throat and breathing for you ( intubation ).  Today as I am writing this the elephant has returned, breathing is hard. I took my mestinon at 7.30am already my right eye is starting to droop, its seems I may have to take my next dose earlier.

The Myasthenic like symptoms are the worst thing I currently deal with and I am lucky they are mild the rest of the time. Last week was like a smorgasbord of every medical condition I have. My PoTs symptoms were crazy – heat induced despite me upping the salt tablets ( to 8 a day ) there  were multiple episodes of pre sycope ( near fainting). I had vertigo luckily I caught that attack very early so I only had to endure the room spinning for an hour but it leaves me tired and feeling out of sorts. I had a migraine on Friday one of the worst I have had in months. It was actually the first migraine I have had since January 14th ( my last one was the Monday after Dembe came home with us). My Tinnitus has been so loud it has been difficult to hear the TV and radio. I have felt constantly exhausted .

Then there was the joint pain and my right shoulder continually fighting to escape it’s socket. To be honest I have only scratched the surface of what I have dealt with over the last 7 days. I really don’t like to say much most of the time because I don’t want to be accused of moaning but if I stay silent about it people think that you aren’t as sick as you claim you are. You just can’t win, you’re an attention seeker if you say something and a liar when you don’t. It drives me nuts. I stay silent because to be honest it is easier that way. I don’t want Jay aka Mr Myasthenia Kid worrying about me when he is at work, I don’t want lots of platitudes on social media. It isn’t because I think they are false it makes me feel like I am drawing attention to myself and trying to play the sympathy card and that’s just not me. 

It’s been really hard this week being a puppy mum, I love Dembe dearly, I wouldn’t be without him but it is hard work trying to keep him occupied whilst using as little energy as possible. On the whole he is brilliantly behaved but like it is with kids there are days when he can be a little bugger and whilst amusing, it can be frustrating, especially when you aren’t feeling well. He is just a puppy though at a little over 6 months old and over time he will calm down. I guess I was so used to Mollie, Frankie and Willow being older and more sedate this has come as a real shock. Jay does loads, he gets up and does his breakfast, he does all the walking and he comes home everyday for lunch to give me a little break and check I am ok. I take my hat off to those of you who are chronically sick and have children, I don’t know how you do it.

It has been a hard week health-wise, I just hope things start to settled down very soon.

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Hoping for a quiet 2019

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

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

 
 

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

My first Quilt

It’s just going to be a little blog post this week as all of a sudden I have started to struggle with the heat. It is again ( as it was like this in the same week last year) much hotter than it would normally be in the UK for the time of year. The last few days I have been struggling with muscle weakness. One day I found myself unable to chew – must be my idiopathic hemifacial spasm playing up…. ***sarcasm*** because it went with an additional dose of mestinon. Obviously the placebo effect ….**sarcasm**

 

Around the middle of May I posted about my trip to the dentist and the fabric shop, where I chose the fabric I was going to use for my first ever proper quilt. Not a quilt as you go where the blocks are all laid out for you but an actual proper quilt. I had seen a quilt design I liked called “Floating Triangles” in a magazine called Simply Sewing designed by Janet Goddard. I loved the minimalist look of it and thought I’d love to make something like that.

 

So that was it, on a whim the fabric was bought and then it sat on my shelf in the kitchen until June 2nd, when I decided to start cutting it out.

 

 

 

A few days later I started to make the half square triangles (48 in total). I must be strange as I enjoy all aspects of sewing, it’s the cutting out I find hard but that’s been made a lot easier with my new creative grids stripology rulers. However for all the squares I had to cut out I couldn’t use my new rulers as they needed to measure 4 ⅞ inches. Typical! So I ended up making a cardboard template. I am useless at drawing straight lines, I really need to buy myself a set square to help in situations like this. I have already invested in a compass for the centre of my Dresden Plate designs!

 

 

The following day I started adding the strips to my half square triangles. Unfortunately I was a little over eager on my trimming of my half square triangles and found that I had to remake a load of half square triangles as they were so much smaller than the others and it would have made the rows wonky. I think in total as further down the line I had to make some more blocks I probably had to remake 10-15. Its annoying but I have kept them all as I will sew them together to make a bag, as I love the fabrics I chose for the quilt. I also had to buy more backing material due to my many cock ups with measuring. Thankfully with the new rulers those should be less!

 

Oh I forgot to tell you about my EPIC mistake of accidentally having two rotary cutting blades on my cutter. How did that happen? Well I bought some expensive blades and they were all covered in oil. I am guessing when I replaced a dull blade I didn’t check properly that it was just one blade. So it cut all my material as if a hoard of hungry mice had been chewing the side of it. Thankfully most of that could be hidden in the seam allowance. I am telling you this because some people seem to think everything I do is perfect and I never make a mistake. Of course I do! If I didn’t make any mistakes I’d never learn anything. I want you to know mistakes are ok, even if I am known on Instagram now to some people as “Two Blades Rach”. It’s quite funny really!

 

 

Once I had made all my blocks I sat down and worked out the plan of my triangles. It was important that I did this so I knew how my rows would go together. I also wanted to place certain fabrics together so they had a bigger impact rather than drowning each other out. I did a full size quilt plan and then I broke that quilt plan down into two.

 

 

 

Once my blocks were made I then put them away in a box and cracked on with a lot of makes for other people, birthday presents, thank you gifts and of course fathers day. I made Jay an Owl soft toy for father’s day which you can see on last week’s blog post. I also made him this lavender pillow

 

Front

 

Completed lavender pillow

 

Tula Pink Fabric back of pillow

I kept putting off making my quilt as I was terrified all the blocks would be all the wrong size and it would be a disaster. It is quite common for me to ignore a project for a bit if I am feeling anxious about it. I also have to be in the mood to sew certain things. I have to be in the mood to make clothes – I find it boring and hard work because I have such a skills gap. I have to be in the mood to quilt as it takes a long time and you can be doing the same thing over and over. It also involves a lot of pressing which in this heat you really don’t want to be doing. It wasn’t until I started making quilts that I learned there was an actual difference between ironing something and pressing something.

 

Last Friday I decided to bite the bullet and put this quilt together. I really hate having WIP’s ( work in progress) hanging around and I don’t do UFO’s (unfinished objects). I have a small house so projects need to be completed and gone rather than hanging around collecting dust! I checked all the sizes of the blocks and as I said earlier realised that some weren’t good enough and needed to be done again. So that added more time onto getting the quilt completed. For me it seems like it’s taken an absolute age to get done but Jay assure me to him it feels like he went to work one day and came back to a completed quilt!

 

 

I only managed to sew the rows together that day, as a lot of planning had gone into each row. Checking against my quilt plan I put all the rows in order using post it notes on each – with the fabric order on also, so that the chances of me making a mistake were minimal. I have made mistakes before with my quilt as you go quilts, where I have decided on an order that the blocks would go in. Taken photographs, only to realise once its all been sewn together…………..3 blocks have been sewn upside down totally ruining the pattern I had wanted to create. At the point of discovery of my mistake it was too late, I had sashed and bound it by then. Lesson learned, this time I over planned!

 

On the Saturday I started to sew my rows together.

 

As it was only 8 rows it went together very quickly, however disaster struck on the 8th and final row when I realised I had sewn the blocks together in the wrong order. Out came my trusty seam ripper and the blocks were then sewn in the correct order. I am so glad I managed to catch that mistake before continuing as it would have stuck out like a sore thumb otherwise the final row would have been completely different to all the other. If I am honest there was a lot of unpicking as the rows were sewn together as I managed to sew triangles together in the wrong position etc. I never let this wind me up though, I’d rather find a mistake at this point than like the quilt as you go first quilt I made.

 

I then cut ( using my stripology ruler) my borders for the quilt and sewed those on. At this point I was just totally in awe of what I had created. My first ever quilt top was sewn together. This was a huge moment for me! I then decided **ck it and decided I would baste my quilt. Basting is basically putting on your wadding and backing fabric, to the quilt top. As I didn’t have much room I did it in two halves not ideal but there was nowhere with enough floor space for me to work. I did it using the ironing board, it wasn’t perfect but it was done. I used a temporary glue spray and safety pins around the edges to ensure it was secure.

 

Sunday was the day I decided to quilt my quilt, that sounds bizarre but a quilt isn’t a quilt until you have sewn all three layers together. This quilt had a very basic pattern just straight line stitches that went through every second row of triangles. I managed to get some floor space in the lounge whilst everyone else was asleep and I marked out the quilting lines with a fabric marker and my huge ruler ( another creative grids one). Thankfully I had set my machine up the day before, so my extension table was on ( I discovered a neat trick as my extension table can move a little, especially when I bash the edge of it by accident, so I used masking tape to keep it in place just taping from one edge of the table to the other sticking it on the bottom of the throat space of my machine – avoiding the needle plate. I only used two strips of tape). I had also ensured that I had rested as much as possible, as I wont sew when I am tired. I started quilting on Sunday afternoon whilst Jay watched the England match. I was finished just after half time. I forgot to say I used my walking foot. I had to unpick a couple of little bits due to puckers and re sew them but its the neatest quilt back I have ever sewn.

 

 

Yesterday (Monday) I decided I would make my scrappy binding and then attach it to my quilt. I machine sewed the front of the binding in place using a tutorial from Lucy Brennans https://www.charmaboutyou.com/ blog. It went on very easily and then I had the afternoon to slow sew the binding onto the back. I finished late yesterday afternoon ( lots of frequent breaks as I have been really struggling with double vision the last few days so that makes threading a needle an absolute nightmare).

 

 

I had made a label for my quilt on Sunday evening but my eyes were so bad by the time I had finished sewing the binding on that I had to stop. I sewed my label on this morning at around 7am as I had been up for an hour or so by then.

 

 

Once the quilt label was on it was time to give it a wash to get rid of the temporary glue and the fabric marker from the quilt lines.

 

 

I am so pleased with this quilt I am still in shock that I made this!

 

And obviously I lied when I said it was going to be a little post, hubby brought our huge fan down from the loft this morning and put in the lounge for me. What a difference that’s made for me and the dogs!

 

Sewing Secrets

I am officially one of the worlds worst secret keepers! How I have managed to keep the following items a secret over the last few weeks is beyond me. When I make something for someone I always want to give it to them immediately  or I accidentally let slip what it is. This time however I have been strong even though it has been incredibly hard.

 

A few times recently in blog posts I have said that I have been unable to share what I have been making that week due to it being a present. Thankfully I can now share with you my makes – which I am incredibly proud of as these two birthday girls have received their gifts.

 

Imogen will be 21 on 23rd June and is incredibly special to both me and Mr Myasthenia Kid. I discussed with him months ago what I would like to make for Imogen’s birthday and he was in full agreement. It took me a little while to source the material as I wanted all kinds of Unicorn fabric but I also wanted it in Pink and Grey so it wasn’t over the top girly.  The first item I made was a 20 inch square cushion cover in a Dresden Plate design

 

I had a bit of a nightmare with the cushion pad as although it was sold as a 20 inch cushion pad, it was actually a lot bigger. I, being a novice and idiot didn’t think to measure the cushion pad before I started making the cushion. I just presumed that if something was being sold as a 20 inch square cushion pad that is exactly what it would be.  So when I placed the cushion pad inside the cover it looked terrible – in fact stuffed sausage would be an accurate description. I was almost in tears as I had worked so hard. So I decided to measure my completed cushion cover and make my own cushion pad to fit it. I used my overlocker to do the edges of the cushion pad and the ladder stitched it closed once I had placed the stuffing inside. I took apart the bought cushion pad and ended up with two nice squares of white fabric and a little excess stuffing.

I also wanted to make Imogen a quilted patchwork Tote bag. I had already made one as a project in my subscription box was this exact thing and they had sent out 42 charm squares, lining and webbing for it to be completed. I had really enjoyed putting it together and couldn’t get over how much I was using the bag as it was so roomy yet so light weight. So I made my own charm squares and bought the webbing online andknocked up one for Imogen.

 

 

I scotch guarded both the cushion and the bag to help resist stains. Imogen can be a little clumsy the same way I can. I also gave washing and ironing instructions with each.

 

Last week on the spur of the moment I decided to add something extra to Imogen’s gift. I had been doing some redwork for my other friends gift but want to change it up a bit so I found a  unicorn design online, unfortunately there is no attribution for this work so I can’t give credit to the artist. I did change it up just slightly by putting a heart around it and not using the words that had been printed under the design. Here is the finished item

 

 

I have filled the inside of the cushion with a mixture of stuffing and dried lavender. It smells divine and the whole house smelt of it for a few hours as I filled several lavender pillows that day. I again provided washing instructions / care instructions just in case. Imogen was given her gifts on Saturday. The message she sent me after opening them was so lovely it made me cry, then Imogen’s mum Helen sent me a message in the evening which was really lovely too and that made me cry as well. It’s really nice when you have spent hours working on an item and the person is overwhelmed by it and is truly grateful for them.

 

My oldest Exmouth friend Ellie also has a birthday in June ( not until the 30th but with works schedules etc it was difficult to know when I would see her next) . I gave her the gifts I had made this morning.

 

This is a redwork lavender pillow. The redwork design was free from a site called https://www.birdbraindesigns.net/ which has some really lovely designs on there. I added my own embellishments to the design and also added Ellie’s initial to make it even more personal.

 

 

This has again been filled with stuffing and lavender. It’s a lovely small size that could be placed under a pillow or in a drawer to leave the scent of lavender behind. I have really enjoyed doing the redwork and have made several more as gifts for people. They take me several hours to do but I really enjoy sewing them. The stitches on these and the unicorn cushion are very basic just a running stitch, back-stitch and french knot are all that are needed to create something that can look quite stunning.

 

The second part of Ellie’s gift had been in the planning stages for ages. I was scared to start it as it was something different than I had ever made before. Plus I kept adding to the level of difficulty. It was the first time I had used the product Odecoat which ( depending on how much you use) can make something totally waterproof. I did enough to make the item water-resistant / stain resistant inside and out.  This was also the first time I had used my machines embroidery functions, I also used the memory function. I used an iron on stabiliser as well and proper embroidery thread. So it was a project of firsts. The pattern comes from Lucy Brennans blog / website https://www.charmaboutyou.com/ and the pattern is the #pieceofmepouch. It’s so stunning and once I had my head around it not difficult to make. I also have to say a massive thank you to Lucy who helped me out when I was being a bit dim and not understanding the pattern. Lucy is always so encouraging and supportive, I can’t thank her enough.

 

 

This week I also had to make my dads father’s day gift.This had been rattling around in my brain for weeks. I knew I wanted to make him something that was special and a one-off but what. I decided after gaining confidence making the piece of me pouch that I could use aspects of that and make my dad a bag to carry his (clean and empty) dog poo bags. I decided that I wanted curved edges on the top, that I wanted it to be 3D rather than 2D. I wanted a loop on the back so he could attach it to a belt and I also wanted a clip on it so that should he not be wearing a belt he could attach it to his belt loops. It also had to be small enough that it would impede his walking.

 

In my mind’s eye I could see exactly what I wanted so last Wednesday morning I sat with an empty bonio box ( dog biscuits)  in front of me and made my template. I used Odecoat again to help make the fabric water-resistant and to make it a bit stiffer. Also when I quilted it, I made the lines much closer together as I knew this would make it much more rigid. I am delighted with the way it’s turned out. Unfortunately due to a series of events out of both of our control I have been unable to give it to him as yet. I am pretty sure he doesn’t read my blog – mum does so I will be safe posting it here.

 

 

My last make of the week was this Owl stuffed toy for Jamie, it was his father’s day present from the dogs.

 

I absolutely adore this and it looks so cool on his bed! So far the dogs have left it alone.

 

* * *

Health wise I have been up and down. The heat had been causing a lot more ptosis than normal. I can really feel the mestinon wearing off after a few hours so I have had to been really strict with my dosing schedule. As once I get full-blown ptosis it can be difficult to shift.

 

I managed to have a large abscess develop under my breast due to the chronic skin condition Hidradenitis Suppurativa. Tuesday afternoon this decided to erupt and immediately go into cellulitis. My breast was so painful I couldn’t wear a bra. Thankfully the antibiotics had it  gone right down within 3 days.

 

A few days over this last week I have been woken up in the night in a lot of pain with a headache ( not a migraine) . I managed to work out on Sunday that it had been due to the position I had been holding my neck in whilst sewing. This was causing me pain through my collar-bone and deep into the soft tissue of my neck. This was then causing me to have awful headaches. I actually got very paranoid that my CSF leak was back, until Mr Myasthenia Kid pointed out that Leak headaches don’t start when you are lying down, they start on sitting up. This headache was with me whatever position I was in. It was not a leak headache more poor posture due to the heat making my muscles weaker than normal.

 

This morning I woke up with a bad pain under my sternum and a burning feeling in the back of my throat. I immediately worked out that when I had taken my 4am antibiotic (despite drinking loads) it had become stuck in my gullet. The tablet had dissolved in the back of my throat and burnt the tissue. I have been drinking gaviscon straight from the bottle and drinking only water to settle it down. It is feeling better than it was but there is still a burning pain. I have had issues with taking capsules for years due to problems with my swallowing. This just highlights again how much weaker this has become during the heat.

 

So although it may seem like I must be doing ok because I have sewn loads don’t let online appearances fool you. Everyday I am on the maximum amount of painkillers I can take as my back is so awful at the moment I have been having pins and needles in both legs. I’m either too hot and feeling faint or feeling cold thanks to my wonky Autonomic nervous system. I am just determined to do my best every day and be the best that I can be and let the creative juices flow. It is what makes me happy. It doesn’t take away all the shitty  health conditions I am living with every day of my life.

Fabric Shopping

Well I am still suffering from this cold, I am into the second week of it now and I am thoroughly sick and tired of being bunged up, sneezing and then rivers of snot! Oh yes I am such a lady!

 

Yesterday I had a dentist appointment, those of you who have followed the blog for sometime know that I have a fear of the dentist. However I would now say that this fear has become a deep seated phobia. I can’t watch people having dental treatment on the tv, the sound of the drill makes me sweat and I want to vomit. The minute the dentist has his hands in my mouth I want to be sick. It’s hardly surprising, I have had numerous horrific experiences at the dentist all the way through my childhood up to the age of 37 when I was finally diagnosed. I still have problems with dentists who don’t believe that local anesthetic doesn’t work properly on me and I have zero pain threshold for my mouth. Anywhere else on my body I have a high pain threshold but combine abject terror and a phobia and the minute a dentists tool touches a tooth the pain starts.

 

Unfortunately I found out I need a lot of work done on my back tooth on the right upper jaw. Due to EDS my tooth has crumbled, (plus I have a habit of clenching my teeth). The central portion of my tooth needs removed and then completely filled. If I had not suffered twice the agony of a dry socket I would have just asked for the bloody thing to be filled but remembering the pain from that means I am prepared to put up with 20-30 minutes of dentistry. But I am already terrified, tearful and just want it to be over. The earliest appointment I could get which would be easy to attend was 10th July. By easy to attend I mean hubby wouldn’t have to take additional time off work. Both the dentist and I are in agreement I need to be given some diazepam to get me through the appointment so I now need to book an appointment with my gp to see if they will prescribe me one tablet so that I can get through this.

 

As a reward for wearing my big girl pants my parents took me to a fabric shop in Exeter. I have never been to a fabric shop having bought all my fabrics online previously. Actually we had decided to visit the fabric shop long before they knew I had the dentist. The thought of seeing lots of lovely fabrics was enough to get me through the dentist appointment. I had decided a few days ago that I wanted to make a quilt for the lounge wall ( I will probably make a few so we can change them over at different times of the year) it is featured in this months Simply Sewing Magazine issue 43 ( page 67) designed by Janet Goddard.

 

 

As usual I wanted to make my own version of this pattern, the colours are lovely that have been used but they won’t go with anything in our lounge. So my trip to the fabric shop was vital so I could decide on my colour theme, which would be green ( it was a question of shade) and I wanted the triangles to be green but with wild flashes of colour. These are some of the fabrics I chose

 

In the bolt at the extreme left of the photo (tiny green triangle) is my plain solid colour that my triangles will be set into. The next 4 fabrics are Kaffe Fasset I got rid of the 6th bolt across which is the deep green with the leaves pattern and kept the one at the end of the table which is a FreeSpirit fabric. I sent a facebook message to Mr Myasthenia Kid to ensure he was happy with my choices as he is going to be living with it to. Here was his response!

 

So you can see he was pleased with my choice.

When I have recovered from my trip out of the house I shall make a start on it. However I do need to make some clothes as I have bought lots of fabric and made no clothes as I have been making some birthday presents which is why I can’t post any photos of my latest makes as it would ruin the surprise. As soon as the gifts have been given next month ( I know I like to be prepared and make stuff early!) I will post the photos!

I forgot I did make some soft toys, two little piggies for Jamie as he saw them in the magazine and on sewing quarter channel 687 (changed on 1st May)and 78 on freeview and asked me to make them for him. It’s the first thing he’s asked me to make something for him.

17 Years

 

On Monday 25th September Mr Myasthenia Kid and I celebrated our 17th Wedding anniversary. That is quite an achievement these days I think, especially when I think about all the weddings that took place around the same time as ours and at least 50% have fallen by the wayside. It’s an even bigger achievement to stay together when your world has been totally turned on it’s head. Just seven years into our marriage I became chronically sick, we deviated from the life plan that we had been following.

 

I have been incredibly lucky that despite all the shit that has come our way we’ve grown stronger rather than split. Many couples when the wife / girlfriend becomes sick disintegrate. Research has shown men are more likely to leave their partners when they become sick. A quick google provides a multitude of articles on the subject. A male friend of mine admitted that he would leave his wife if she became sick as that was not what he had signed up for. I was disgusted and basically the friendship ended immediately after this conversation. I couldn’t believe anyone could be so cruel.

Hubby and I got married in Sri Lanka, just the two of us. I have always found it highly amusing the indignation this causes in people, it really doesn’t concern ie not related to me, not even friends with me. I have had quite a bit of stick over the years from complete strangers for getting married without my family present. Yet neither of our families minded that we were getting married abroad and that we were effectively eloping. At the end of the day I was marrying Jay not anyone else. I have been accused of being rude, disrespectful and making a mockery of marriage. It’s left me absolutely pissing myself that people can be so reactionary years after an event, which up until I told them about it, they had no clue it had happened. How does that even make sense? At the end of the day however a couple want to get married is up to them and no one else deserves a look in. Especially in this day and age where so many couples pay for the majority of it anyway.

 

Our Wedding / Honeymoon was also the first time in our relationship that we had been on holiday together. It was only the second time I had flown. It was all very scary and new. Our wedding also took place right in the middle of the petrol crisis ( Link Here ) we didn’t even know if we were going to make it to the airport to even have the wedding at one point, as fuel was running out everywhere. Like most insurance our travel wouldn’t cover us for acts of civil disobedience which the petrol crisis had been classified as, so if we were unable to get to the airport due to it we couldn’t make a claim. Any bride is stressed out before her wedding day but this going on, with all the others things that needed organising was enough to push me over the edge.

 

My dad had been planning to drive us to Heathrow and then collect us when we came back. However due to the shortages of fuel it wasn’t going to be possible so we booked coach tickets. As we both worked in retail we were classed as necessary workers (can’t think of the proper phrase) along with the police, doctors, paramedics, etc so a friend filled her tank up and dropped us on the bus station the day we were leaving for Sri Lanka. My parents came up from Plymouth and sat with us until our coach was leaving. It all felt pretty surreal.

 

 

We couldn’t get married in Sri Lanka until we had been in the country for at least 5 days. We  met the registrar who would be conducting the ceremony on either the second  or third day of our stay. It’s really strange that I can’t remember the day but I can remember one of the hotel staff carrying a sign with our room number on, which meant we had to go to reception. We were in the pool at the time so covered ourselves up the best we could with towels and a sarong for me. Had the staff been kind enough to let us know why we needed to go to reception we would have made sure we were properly attired. I wanted the ground to swallow me whole when I realised I was having to conduct an official meeting about our wedding wearing a swimming costume.

 

I remember there being one other meeting with the wedding coordinator to decide what time we were going to get married on the following Monday (that was our 5th day in the country). We knew virtually nothing about what the ceremony was going to be like, it was all very seat of your pants stuff. If the cocktails at the bar hadn’t been so lethal I would have had several sleepless nights. We plucked our two witnesses out of a group of people at the tour operators meeting the day after we had arrived. The conversation went like this “ Hi, we need two witnesses for our wedding. Are you doing anything on Monday?” and that was that. We have been friends ever since!

 

I won’t lie hubby and I had been drinking (quite a lot of)  the local alcohol the morning of the wedding. Which probably helped a great deal when the registrar attempted to marry the wrong couple and called me “Samantha Jane Murphy” I fell about laughing, whilst Hubby corrected him. Had I been sober I’d have probably gone mental at him. Instead it made for a very funny wedding video! We were very lucky as it was the end of the Monsoon season and there had been a lot of rain in the weeks before, our wedding was the first to take place outside for several weeks. Samantha Jane Murphy has hers indoors later that day, as we passed them on our way down to the pool. How many people can say that on their wedding day they went for a swim? Oh and we rode an elephant.

 

***

I’m still not smoking, that will be 8 weeks on Sunday. Still not sleeping properly so I have purchased some of the lotion from Lush called Sleepy that people are raving about and will see if that helps at all! I still have ptosis daily and have to take mestinon 3-4 times a day or my legs stop working, that must be the muscle spasms LOL!

*

https://well.blogs.nytimes.com/2009/11/12/men-more-likely-to-leave-spouse-with-cancer/?mcubz=1

 

http://www.dailymail.co.uk/news/article-1214051/Men-likely-leave-sick-partners-study-shows.html

 

http://www.nbcnews.com/id/33832513/ns/health-cancer/t/men-more-likely-leave-spouse-who-has-cancer/

Warning shot

This last week has been a tad crazy. By “normal” people’s standards it’s a very light week, especially when you consider there was no full-time or even part-time work involved. My body is still playing catch up and my mind despite it being ten years on (since becoming sick) is struggling to come to terms with the fact that I can’t just do stuff like a normal non chronically sick person would.

 

There have been various things that have needed doing around the house for an absolute age, actually just months rather than years but the week before I had got to the point of no longer being able to put up with these jobs not being completed. Our tumble dryer (condenser) had developed a leak and now was having the habit of tripping out the electrics after it had been used. It had been unplugged and unused for the summer however we hit September and all it seemed to do was rain. I don’t mind drying the day-to-day washing on an airer in the house if it’s not possible to dry it outside but towels and sheets are another story. I bite the bullet and arranged for an engineer to visit. He would be coming on Tuesday which was also hubbys day off.

 

Two weeks prior I had arranged with my hairdresser to come over on Wednesday 6th to sort my hair out. It needed a full head of highlights as my greys were starting to show or fairy glitter strands as I like to call them. Plus I couldn’t do a thing with it, so it needed a good cut as well.

 

In January this year we had a leak behind a plasterboard, it was all sorted and settled. We decided that we would sort out getting the repairs done ourselves and then redecorate at our own pace. Hubby had been given the job of sorting out the plasterer. I had simply refused to be the responsible adult all the time just because I was at home and don’t work. It’s not just that, hubby also has a bit of a phobia about contacting people he doesn’t know (in his home world, in the world of work it’s not a problem), so he avoids it at all costs rather than confronting his fear. I was practicing some tough love but after 8 months I had to admit defeat. If I didn’t want to put tinsel around the holes in the plasterboard at Christmas I was going to have to sort it out myself. Luckily on a local community group on social media someone asked for a recommendation for a plasterer. Two names were mentioned I contacted both, arranged for them to come over and have a look at the job / give me a quote. The one I chose was available the following Thursday (7th).

 

I knew as I looked at the week ahead it was going to be tiring but I just assumed that I would bounce back after a good night’s sleep and be fine for the following day’s  activity. What an idiot I was. I am still trying to recover from last week. I have suffered with fatigue before but the levels of fatigue I am suffering with at the moment make me feel on a pretty regular basis that I am having an out-of-body experience.

 

Tuesday wasn’t too bad other than it was embarrassing. The cause of the leak in the tumble dryer was that the water collection point at the very back of the machine not accessible to mere mortals like you or I was completely choked up with dog hair. When an engineer tells you that’s the worst they’ve ever seen one blocked up, you want the ground to swallow you whole. The tumble dryer is cleaned regularly, the filter is cleaned after every load that is dried. The condenser unit is washed through once a week and it is hoovered inside at least once a month but even doing all that wasn’t enough to stop it getting overrun with dog hair! Remember we have three so maybe that is why? That cost us £50 for about 5 minutes work but it needed to be done.

 

That night I used the tumble dryer on one load. I really wished I hadn’t as once I had gone to bed as I spent the night panicking that it would have knocked the electric out in that part of the kitchen which unfortunately the fridge freezer is in. A few times before the tumble dryer had been fixed I had come down in the middle of the night to find that the fridge freezer had no power being supplied to it. What had been happening was the automatic safety cut off for the tumble dryer had been triggered which was then knocking out the fuse but not in the main fuse box. Wednesday morning I was absolutely exhausted from having very little sleep. And of course the Fridge-Freezer was absolutely fine.

 

My hair took three hours and by the time it was finished all I wanted to do was go to bed and rest, which is exactly what I did. I could barely sit or stand as my back was so painful from sitting upright for so long. My hairdresser did a fantastic job and she said my hair has come back lovely and thick after it thinning due to my hormones being out of whack. I am much happier with how it looks and I am so glad I can get it done at home without the added stimulation of the lights / noise / people at a salon. I thought going to bed for the rest of the day would be enough for me to bounce back for Thursday and the plasterer being here. No it wasn’t.

 

Thursday was an early start, I’d had to set my alarm as I knew with being so exhausted I would want to sleep on. That luxury wasn’t available to me when the plasterer had said he would be here for 9am. I had assumed that the job which was to skim a wall and fix two holes in the plasterboard would take a couple of hours, after all it wasn’t a whole room. Jay would be at work so I would have to ensure the dogs behaved and were out of the guys way. We installed a free-standing baby gate at the bottom of the stairs so that the dogs wouldn’t bother him whilst he worked. Normally the dogs are pretty good when there is someone working in the house, after the initial excitement they tend to just settle down and go to sleep. Not last Thursday they decided that they would bark and generally make a nuisance of themselves. I did managed to keep them occupied by stuffing Kongs with peanut butter and bread. Eventually they did just flake out and go to sleep but not until after a stressful first few hours.

 

The plastering took over 5 hours and by the time he left I was on my knees with exhaustion. I could barely function at all I was so tired. Again I thought with a good night’s sleep and I would be ok. I would have a lazy day Friday and everything would be fine. In the old days when I first got sick and possibly up until last year that would have been the case. However for some reason this year it has all changed and it’s taking me much longer to recover and smaller things are causing major recuperations. It is very frustrating as my brain is refusing to acknowledge this. Friday I just felt drunk or extremely hung over all day. I couldn’t watch TV or listen to the radio as I just couldn’t follow what was going on.  I did as little as possible Friday and Saturday I just slept on and off all afternoon. I had hoped by Sunday that I would have turned the corner but after a short visit from my parents in the early afternoon I just crashed and ended up in bed for a few hours.

 

This week is a quiet week, I had a friend visit Monday which was good as it forced me to behave and do nothing. Tuesday hubby was day off so he did the cleaning and any household chores that needed doing. My head is still giving me lists of things it insists I must do but my body is saying no. I had hoped I would be ok this week so I could potter around and get a few jobs done before Mr Myasthenia Kids holiday next week but it’s just not going to happen. Mestinon / Pyridostigmine Bromide is only lasting 3-3.5 hours instead of the 4-6 it had been lasting previously, this is a warning shot to let me know I can’t keep pushing myself and expect no consequences. Hopefully the next 6 and a bit weeks are going to be very quiet before we go on an adventure to the Emma Bridgewater Pottery factory as a birthday treat.