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.

Weird Week

The last week has been really revolting on the vertigo front. The air pressure due to thunderstorms developing ( we were really lucky and avoided them but it was so hot and sticky!) made my ears misbehave leaving me with a couple of days where I felt like I was constantly spinning. Despite all that I have still managed to get some sewing done and even give a lesson to a dear friend of mine.

 

I am having to write this post uber early (Sunday evening) as on Wednesday, which is usually blog post writing day, I am on a course to learn how to use my over-locker. I am already starting to panic that a day learning on a course is probably going to be too much for me, probably? Who am I kidding? This will floor me especially when my health isn’t great due to this ear problem.

 

I have had to grab whatever moments I can to do sewing this week as quite a lot of the time I just haven’t been able to. Thursday I had to quickly prepare fabric ready to teach my friend Imogen some basics on the sewing machine. I decided for her first lesson I would have her make an envelope back cushion cover. I decided that having her sew straight lines on calico would probably drive her around the twist. Imogen is naturally creative and she thinks like a sewist. I decided I would cut out all the fabric out for her and overlock all the edges. All Imogen would then have to do is sew some straight lines and she would come away with a finished item. I finished all the prep work and then ended up going to bed as the vertigo became so bad I couldn’t walk in a straight line.

 

On Friday Imogen came for her lesson and our bi weekly catch up. I got her to practice rectangles to begin with on some calico as she would need to know how to pivot the material keeping the needle down. She did really well so I let her loose on  the material – pink with unicorns. She did a fabulous job and I tried very hard not to be constantly leaning over her by playing on my phone. She was so surprised when she had finished sewing it and genuinely pleased with herself. She did a fantastic job. Although she will probably kill me for posting this photo!

 

 

I was exhausted on Friday night and was asleep before 7.30pm. I also managed to forget to take my evening meds which meant I went into withdrawal, thankfully it wasn’t as bad as it was last time when I wrote about it here https://wp.me/p4zBAs-m6  but it left me feeling pretty off colour all of Saturday. However I still managed to get the rest of my fabric cut for my Kaffe Fasset / Free Spirit fabric quilt.

 

 

Today (Sunday) I have finished my wall hanging that has been waiting to be completed since it arrived in April. During the week I quilted it.

 

This left the scrappy binding to make and then attach both tasks completely new to me. Thankfully there are lots of videos on Youtube showing you how to make scrappy binding – this is where you make your binding from scraps. Thank goodness my Creative Grids Stripology ruler arrived during the week, making cutting strips of fabric an absolute doddle.

 

I then sewed by machine the binding onto the front, which included mitred corners – proper mitred corners not the bodge job I have done previously. Then once the binding was sewn onto the front I pulled it over the edge onto the back and using clips held it in place whilst I hand sewed the  binding to the back of the quilt.

 

 

The hand sewing of the binding onto the back of the quilt didn’t take much time at all. I made sure the stitches were really small so they are barely noticeable, it’s the neatest any of my quilts have been on the back. Finally the wall hanging has been completed, we now need to decide how we are going to hang it on the wall.

 

 

It’s been a really weird week with my ears playing up, forgetting my tablets and ensuring that I have enough energy to make it through Wednesdays (6th June) course which is also my 10 month anniversary of giving up smoking, Thursday 7th June it will be 8 months since I started sewing, since then I have bought a further two sewing machines and an overlocker!

Tuesday night the wall hanging was in situ!

 

Jamie did a new video yesterday!