Recovery is dragging

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

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

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

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

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

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

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

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

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Rainbow Bridge

I have  called this blog post Rainbow Bridge as all pet owners will know what I am talking about and can make the immediate decision whether or not to read this post. If you decide to skip it, I understand . I can’t even read the poem Rainbow Bridge without breaking down and turning into a snotty, red faced, tear stained mess. So if you decide from the outset that this post probably isn’t for you, I get it. I will just reassure you that I will not be talking about Frankie or Mollie’s passing at the start of this year. That shit is just too raw still to deal with and I would prefer to spend the remainder of the day functional rather than being the snotty, red faced, tear stained mess I know I will become.

 
The blog post is called Rainbow Bridge because I want to talk to you about the very real depth of grief losing a pet, any pet can cause you. A grief that you can feel embarrassed about because you didn’t know it was possible for your heart to physically hurt so much and you not keel over and die. A grief and depth of feeling that unless you have lived the experience you can not begin to even comprehend what the other person is going through. And a grief that you feel you have to hide from the world as grieving over an animal is still seen as self indulgent, selfish, weak, being melodramatic. A depth of feeling that is so strong that it even takes you by surprise.
 
We are in this country ( the UK ) crap at dealing with other people’s grief, even when they have lost a child or a partner. We seem to assume that once a person returns to work or starts doing normal things again that they are ok. Many people seem to think that there is a set period of time that a person should grieve for and after that time has passed, all that emotion and sadness should just turn off. If they don’t you are seen to be wallowing or attention seeking. A lot of people just don’t seem to understand that grief is not a linear journey and that it never ends. You will always be dealing with your grief one way or another. Time is not a great healer, there is no healing for grief, there is a just getting used to it. What initially in the first days, weeks and months seems all encompassing does slowly reduce in size but it never leaves us. It is something we carry always.
 
Those of you that aren’t pet owners may be surprised to read that it is exactly the same for those who have lost a pet. I really hate using a the term pet as I feel like it diminishes their status. But until someone comes up with a better word, I will have to use the one that is universally understood. Most people these days understand that our pets are more than just “pets” they are much loved members of the family within their own rights. Which is why it cut me to the core when somebody recently clumsily said to me ” You were so lucky to get Dembe when you did to replace…” she stopped herself continuing with this statement as I think she realised how awful what she had said sounded. 
 
There is no replacing a beloved cat, dog, guinea pig, hamster or horse. The same as you can’t replace a mother, a father, a child, a friend. Each one of those like our pets are unique. So why people use the dreaded replace word I have no idea. I’m glad it was said recently to me rather than just after it had happened because I don’t think I would have been able to control myself. I may have got physically violent because it was just so insensitive. Now because there is a little bit of distance from the event and I am not caught up in the overwhelming emotion of it, I can understand that it was clumsy and not ever meant the way it sounded. Why do I know that? This person has recently lost her mother and father in the space of a couple of years. She knows there is no replacement for them, she is also a dog owner and knows they can’t be replaced either. Had she said this in January I wouldn’t have been so forgiving.
 
When I found myself in the position of losing Frankie and Mollie within 7 days, having lost Willow 55 weeks earlier, I honestly didn’t know how I was going to carry on without them. The pain, the grief was just so overwhelming. The house had already felt strange after Frankie passed and then when Mollie was no longer here, it seemed so cold and empty. I missed the feel of their fur, the warmth of their bodies, the noise their paws made on the laminate floor. The pools of water Frankie liked to dribble all over the floor after having a drink. The barking, the farting, picking up the poo, the bonio (dog biscuit) crumbs. Everything that had meant being a dog owner for the last 15 years had just been suddenly snatched away with no warning. Everything seemed so bleak and miserable. You will never know how much you will crave a cuddle with a dog ( or any pet ) until you suddenly are no longer able to do it. 
 
That was the hardest thing to cope with in the days that followed their passing, that I couldn’t stroke a dog, be licked, have a tail wag. Jay and I spent every minute that we could out of the house because being in the house just magnified our loss. We were lucky in the respect that a week after Mollie passed away we brought home Dembe. I dread to think what life would have been like without him. I know some people will think that far too quick and that they don’t feel that they could take on another dog / animal whilst they are still mourning their loss. Everyone is different and there are no rights or wrongs in this situation. Had there not been any puppies available we would have had to wait, it is just the way things happened. We felt at the time and still do that it was written in the stars. The breeders had the same surname as the breeders of Mollie and Travis. Dembe’s mum was called Willow, it all seemed like it was just meant to be.
 
Did having Dembe stop the grief? Of course not. In some ways it complicated things because initially I was terrified that Dembe was going to die. My anxiety went up through the roof. It had been a very long time since we had a puppy in the house and it all seemed very alien to us. So whilst trying to come to terms with losing my babies – which they will always be to me no matter how old they were, I had a new baby to deal with. It some ways it was also good for us, we threw ourselves into socialisation and getting lots of experiences under his belt. That meant we had to leave the house and see people. We invited lots of friends over to get them involved. I don’t think for us any time would have been the right time to bring a puppy into the house. Our lives had revolved around our Weimaraners and this was such a massive change to our life, it will probably take us years to get used to it or our heads around it.
 
What did surprise me was the way the people seemed to think once we had Dembe that the grief would just suddenly disappear – as in the replacement theory. There were good surprises as well, people that I had only ever known on facebook sent flowers, cards, gifts. We had so many messages from people. Even though at the time it was hard to read them, not because there was anything wrong with them but just because they were so kind and thoughtful. I heard that Jay’s boss broke the news to his colleagues at work and a couple of them burst into tears because on the previous Saturday the poor man had also had to tell them that Frankie had passed away. No one could quite believe that life could be so cruel. I still don’t believe it but I am happy that Frankie and his mum / best mate are together again.
 
Initially I felt like we had to hide the fact that we had been looking at puppies and we had visited Dembe, paid the deposit two days after Mollie had passed away. It wasn’t because we didn’t love her, I have been crying on and off as I have been writing this. It is because Jay and I are realists, we knew the dogs couldn’t go on forever. Mollie was 14 and quite deaf, Frankie was losing the use of his back legs, had arthritis in his hips and spine, he hadn’t been able to wag his tail for months and was a huge 41kg, 12 year old dog. He had lived far longer than anyone had expected. Even before we lost Willow in 2017 we had been discussing when we got a dog in the future what breed it would be and what his name would be. We had always said we would have a boy, due to the fact both girls had spay induced incontinence after being spayed as emergencies. We said a Labrador as Mollie had always had a thing for black Labs, she adored them. We never knew why but if she met a black lab on a walk her face would light up and she would play bow. The Weims were as much part of our decision making process as we were, as we wanted their blessing. I know none of them would have wanted us to live our lives without a dog.
 
I saw a Meme not long ago that said Dogs fill your life with many happy days and the one worst day of your life. It is pretty true, although the worst day is the worst day when you have to say goodbye, the not so worst days follow, where you have to face life without them and hope that Rainbow Bridge is true and that one day you will all be together again.
 
In Loving memory of 
Travis Morris
Mollie Morris
Willow Morris
Frankie Morris
 
Not a day goes by that I don’t mourn your loss. Not a day goes by when I don’t talk about at least one of you to Dembe. You would have loved him so much.
 
Travis
Mollie
Willow
Frankie
 
Everyone thinks they have the best dog ever,  none of them are wrong.
 
Dembe

I am a survivor

Well I am still not feeling the blog. I don’t know what’s going on but I am really finding it hard to come up with stuff to write about. I am spending 7 days waiting for inspiration to strike and it just isn’t happening. By Tuesday each week I am in a bit of a panic, I like to try and write on a Tuesday if Jay goes out running errands. If not I will wait until Wednesday morning but I don’t like leaving it until Wednesday as I always panic if I have a migraine or something and no blog post is produced.

At the moment the days are just merging into one. I haven’t seen any of my friends for over a month although I keep in regular contact with some of them. I have come to realise over the last 8 months that some of the people that I thought for there for me, disappeared when Frankie and Mollie passed away.  I understand that everyone has their own lives and families, with their own shit to deal with but it has been a very isolating experience. Some people have made a supreme effort to be present and other well not so much. It’s ok as I have a long memory and will be sure to return the favour when the shit hits the fan in their lives. I didn’t expect to be visited constantly but the occasional text message would have been nice, especially when they know my situation of living alone and Jay working.

Thankfully though I am pretty self sufficient, whilst dealing with my grief, I was juggling a new puppy and attempting to find time to sew / embroider. It hasn’t been easy but Dembe and I have found a new routine that works for us. He is pretty good at entertaining himself whilst I am busy sewing. He always positions himself in a location where he can keep an eye on me and ensure he knows if I have moved. He likes one of three places, the bed by the washing machine, the sofa that looks into the kitchen or out under the gazebo on the bench surrounded by all the cushions. I can’t believe my luck that he doesn’t get bored and then start destroying things. When I have finished sewing he knows that is our time and I will ensure I spend the time playing with him, doing training or just cuddles depending on his energy levels. I have been blessed with a pup that is so very well behaved and so very loving. His favourite spot for sleeping is right beside me on the sofa. This is him right now as I am writing this post.

My life has totally changed this year, I have re-assessed a lot of relationships. I have made the decision that I won’t swim an ocean for people who wouldn’t jump a puddle for me. I have decided that instead of worrying about what everyone is thinking or saying about me behind my back and believe me you’d be surprised the shit I hear being spoken about me by people who should know better, that I shall just carry on living my life and enjoying myself. The best revenge on those sad twats is to enjoy yourself and plaster it all over social media. It totally then fucks up all the fairy tales that they have been telling people for years.

I am also getting out of the house a lot more, this does have to be limited and planned for. I haven’t suddenly magically got better, it is just with one dog things are a lot easier. Especially as Dembe is such a friendly dog and on the whole pretty well behaved, although we have now hit the teenage years and recall seems to be a take it or leave it thing! Fatigue still grinds me down. I like using my energy for things for things that make me happy. So using my mobility scooter on Woodbury Common and getting out with Jay and Dembe has been unbelievably healing and grounding. 

It has been the one thing I have missed most since I got sick. The wheelchair trike although brilliant is an absolute ballache to transport. The wheelchair is fixed framed so that would take up the whole boot and then I would have to juggle the trike attachment with me in the front of the car. Not exactly safe. Then I piled on a load of weight when I developed my CSF leak and was virtually bed bound for a year, then in 2017 and 2018 we suffered a number of bereavements and I tend to self medicate with gin, chocolate and junk food / takeaways. I was 5 stone over the optimum user weight for the trike. So anytime I did try to use it the battery drained in minutes. I’ve been too embarrassed to say that because I allowed myself to get fat as fuck, I haven’t been able to use it. Hopefully now I am back losing weight ( it’s taken me until the last month to feel like I can actually do it) and I am back to 3 stone down, ideally at least another 3 to go so I will be massively under the optimum user weight. The trike will be used in the future as it is more suited to the rough and rugged environment of the common.

I do love my mobility scooter though and it has given me back my independence. It is easily taken apart to it can fit in the back of the car. It makes life so much easier if I need to go to the doctors or the hospital for appointments.

Over the 2 months I have got back into sewing and actually enjoyed it rather than feel I am going through the motions. From January until June I made a bloody good show of pretending I was ok, ensuring I used my embroidery machine every week and appeared to be enjoying myself. At points I felt like I was dying inside. I felt like a shell of the person I was. I didn’t feel I could voice the pain I was in. I know others struggle with grief especially when it is over an animal and not a human being.  Like I said earlier it has been one of the most isolating experiences of my life. There just felt like there was no one there. I do wonder if there had been someone their if I would have still felt so isolated.

I do have a tendency when things are tough to disappear into myself and attempt to shut out the world. I still kept on posting on social media, I still kept the creative things going but in all honesty I was going through the motions. It is only now that I can watch anything remotely sentimental without breaking down immediately. I only now feel like me. I feel like I have been on some weird journey where at points I lost myself. It is true what doesn’t kill you makes you stronger because in January / February this year I honestly thought the pain would kill me or I wished it would.

So I skillfully went off on a tangent there, I am enjoying sewing again and being creative rather than having to force myself to do it in the hope at some point the joy would come back. I am still working on my scrap busting quilt sew along. I found out yesterday that it is between a double (bed) and king size (bed) size, so it definitely is the largest one I have ever worked on. I made the back panel for it yesterday.

And in case you have forgotten what the front looks like

This morning I sorted out the wadding ( what you call batting in the USA ) which needed sewn together. I also made some plastic templates  to draw around as I have decided to tray something totally different with the quilting. It has taken me a few days of mulling it over to come to my plans. I have drawn it out so I have something to refer to. I now just need to have Jay clear the floor space in the lounge so that I can put my quilt sandwich together quilt back + wadding / batting + quilt top. I use temporary basting spray to hold it together but as it is so large I will also be pinning it. This ensures that the fabric stays nice and flat so it doesn’t shift and give you puckers. I also managed to sort out the binding yesterday. So it is all ready to be quilted shortly. I will be quite glad when it is finished now as I hate half done projects hanging around. I am really ready to now get myself into new projects and stretch my skills.

Anyway I started with no clue where this post was going and have managed to ramble on forever!

Dembe has changed locations

He likes it so he knows exactly where I am in the house at all times.

I think this year I have learnt, a lot and we are only in August. My heart has hurt more than I ever thought possible without keeling over and dying. I have learnt in the depths of grief you are still able to love unconditionally and you must never feel guilty for that. I have also learnt that the majority of people run away from grief and think that is acceptable behaviour. Despite all this I have come back stronger, love another dog more than I ever thought possible but when you have this gorgeous mutt in your life how could you not?

And yes he is holding my thumb in his mouth!

This is the year that nearly broke me, the year that changed everything and has just proved to me I am a survivor.

Mish mash

I will admit I am pretty tired and have lost my mojo with the blog this week so I thought rather than post nothing at all, it will be a bit of a mish mash of lots of different things!

I had my physiotherapy treatment today, which consisted of deep tissue massage and ultrasound treatment. I am feeling very sore, nauseous and headache. Which is what always happens when my neck has been messed around with. I will feel better tomorrow but for now I feel like I have been through the 1600rpm spin cycle of my washing machine! The good news is that the pins and needles I have had in my left arm/ hand and shoulder has already improved significantly from this session earlier on today. I am booked in again for a treatment in September as my physio is away in August. Lucky for some. She is a miracle worker and I enjoy my sessions with her as we have long chats sometimes very in depth and emotional and sometimes fluffy. But it’s a good laugh even though the pain of being prodded makes me levitate above the bed sometimes. 

My neck muscles have become very tight again which is obviously the complete opposite of what EDS is supposed to do but we believe it is my bodies way of trying to keep my neck and head safe due to the lax muscles, ligaments and tendons. I hold all my tension in my neck and all my headaches come from my neck. It is a situation that has got worse over the last few years. At the moment I am resisting wearing a collar full time as whatever strength I do have in my neck will disappear completely. I am also aware that nothing touches the pain of a neck induced headache, well that isn’t strictly true as diazepam is the only thing that helps. But quite rightly the doctors don’t like prescribing that and I really can’t be bothered at the moment to go and beg. 

The other reason I won’t wear a collar full time is vanity, plain and simple. It makes my face look fat and it doesn’t need to look any fatter than it already is.

I promised a mish mash so here it is. Ages ago I wrote about my hirsutism, it initially started when I was put on steroids in 2008. I have always had a blonde moustache over my top lip but the steroids made the blonde hair thicker and much more noticeable to me.  I also grew more peach fuzz on the side of my face. Age and possibly being at the start of the menopause has given me a lovely crop of black hairs on my chin that like to go unnoticed until they are 2ft long or I have had the dentist / doctor / hairdresser / friends over. They only stop playing hide and seek about an hour after you’ve been at the dentist / doctor / hairdresser or had company. Despite the fact that you checked your known outcrop spots religiously using both natural daylight and the torch function of your mobile phone.

Over the years I have tried a variety of hair removal tools and they have all been crap. Hair removal cream results last for about 12 -24 hours until you can start feeling the regrowth. Plus I became allergic to them so whilst I would have a hair free top lip I would end up with a red raw line above my lip. I even ended up with chemical burns on one occasion so after that I haven’t used hair removal cream again. I have tried plucking but that is ridiculously time consuming. You also need very good eyesight and light to get a reasonable result. I then tried using Jay’s ear hair trimmer as it had a variety of different cutting heads. The problem was the hair would be back within a few days and feeling prickly because of the blunt ends caused by the cutting blades.

So a while ago I looked into waxing, I have no idea what prompted it. I use an epilator for my legs, so it probably came from that. I looked around on Amazon and came across the wax warmers, wax beans and all the bits you need to give yourself a wax treatment. I ordered all the kit and last week I started trying it out. I have found it remarkably easy and I don’t need really good eyesight to produce good results. I won’t lie the first time I did my top lip it made my eyes water but I was amazed at how much it took off. I bought some wax for sensitive skin and without colouring. As the wax was pale I could see all the hairs trapped in it, so despite my eyes watering I was pleased. 

After my first go it was clear I needed to work on my technique, so I watched several videos on YouTube. That has been a massive help, as with the wax beans you don’t use cotton / paper strips to stick to the wax, the wax sets firm enough that you just pull the wax strip off.  The real skill is creating a lip at the bottom of your wax strip so it make it easy to remove. I haven’t quite mastered that yet but I am getting there. I had another go before physiotherapy – that’s another occasion these hairs like to come out of their hiding places, this attempt went better. I think it is going to be one of those things that the more you practice the better your technique gets. The results have been really good and lasting much longer than any other hair removal technique I have tried.

Going off on another tangent, like I do. I have been managing to get out and about up on the common accompanying Jay and Dembe using my mobility scooter. With the weather being so dry the ground is nice and compacted making it must easier for the scooter to cope with being off road. Dembe gets really excited when I come out with them both for a walk. I have been managing to get out a couple of times a week.

 

Dembe is 8 and a half months old now and loves his walks. Although he doesn’t go as mental as the Weimaraners did. 

I  am still working on my quilt, I managed to square off all the blocks at the weekend and they are sat waiting to be sewn together. On Sunday I was on a local facebook group where people offer things to give away for nothing, in return the people that have stuff off the page must make food / toiletry donations to help those families in need locally. I spied some curtains that had been posted on the page before but no one had shown any interest. At the time I was drawn to the birds on the material. I thought I would be able to upcycle the fabric into bags or something. However when I got them home I realised how much I liked them and wanted to use them as lounge curtains. I had been looking to replace the curtains in the lounge for years but I had just never seen any curtains that I liked. 

The curtains needed some TLC, I don’t think they had seen the inside of a washing machine for many a year. They also had some holes in them where the fabric had become weak from being exposed to strong sunlight. What should have been a simple job turned into an all day event. I repaired the curtains in the space of an hour but found that they were too short for my window. So I ripped open the bottom seam as I could feel there was extra material contained in the seams. I only needed 4 inches at a pinch 3 would do. As luck would have it one curtain contained 17 inches and the other 15 inches. The lining had also been folded up. I was worried as these curtains were very old that the fabric that had been tucked away in the seam maybe brighter than the fabric that had been exposed to the sunlight but there was no discernible difference between them. I altered the curtains and the lining and now have a wonderful set of curtains for the lounge.

The fabric design is called Spice Island and was produced from the 1960’s until the 1980’s. It was sold in the UK department store called John Lewis and the designers name was Pat Albeck. You can find out more about her here – https://www.theguardian.com/artanddesign/2017/sep/15/pat-albeck-obituary

Quite spookily she was Emma Bridgewater’s mother in law. For those of you who follow my blog you will know that I collect Emma Bridgewater pottery. So it seems apt that I have the Spice Island designed curtains in the same room as the majority of my pottery collection.

I am so pleased with the job I have done on the curtains as I have never done them before due to the worry about having to be 100% accurate – not something I am brilliant at when it comes to straight lines. Mr Myasthenia Kid loves the curtains to, it was his idea that we have them ourselves instead of me cutting them up and using them to make bags.

Anyway like I said this week is an utter mish mash of stuff. I hope you have enjoyed the many tangents I have gone off on! 

See you next week.

Migraine

I had wonderful plans for what I was going to write this week but at 4.30am I was struck down by a migraine. Thankfully it is on its way out, the attacks have been shorter in duration since I worked out my migraines are triggered by instability in my neck when I am asleep. As soon as I know a migraine has started I put on my soft cervical collar and keep it on for several hours. When I can I add in 2.5mg of diazepam to relax the muscles that go into spasm on my forehead. Although the length of time I suffer with pain has shortened the after effects last all day. I am very limited with screen time. Hence why this is such a short post.

To make up for the lack of words I will spam you some more of Dembe, who is an absolute angel when I am poorly. He stays by my side and will only start behaving like a 7 month old pup once I am up and moving around.

Hopefully normal service will resume next week.

Holiday Post

Mr Myasthenia Kid has been on holiday over the last week and for the rest of this week. Due to this I woke up today Wednesday 26th June and realised I hadn’t written this weeks blog post and I was completely clueless as to what to write. So I am going to be really lazy and just spam you with some photo’s of Dembe who has totally stolen my heart!

This was his first meal back on January 11th 2019. We laughed so hard with him climbing inside the bowl. He was so dinky I was permanently terrified that I would stand on him or fall over him.

 

This was taken when he was 9 weeks old. It seems ages ago that he was this tiny, it’s crazy to think it was this year.

 When he first came home he was obsessed with anything that smelt of his daddy and still is. His latest trick is to raid Jay’s dirty laundry basket and steal pants out of it. If there are no pants anything will do as I found out this morning as he brought a T-shirt into my bedroom.

We bought him a cute little toy box which we thought would last him a very long time. His favourite thing to do was chuck all the toys out and climb inside. When he first came home he couldn’t even get in the toy box and we would have to get his toys for him.

In this photo he is 19 weeks old and it marks 11 weeks that we have had him home. It is really crazy how much he has grown in just 11 weeks. At this point he could get on and off the bed by himself, climb the stairs up and down, jump on and off the sofa. All stuff he was way too tiny to do when he first came home with us.

A month on and he has grown again! No longer looking like a baby but like a small grown up doggy.

This along with his first go in a paddling pool is my all time favourite video of him. He had been confined to a small patio for around 6 weeks whilst the garden was revamped. This was on the first day that he got to explore the whole garden. He went crazy! Just adorable.

His first go in a paddling pool back in May. He loves his paddling pool.

He has got so big he can now jump on the bench, the last thing he has been able to master.

This was yesterday at the garden centre as part of our homework from his obedience training classes. We are taking him out to lots of places so he gets used to being in different situations as he is being trained to be my assistance dog.

Last month I taught him how to take my socks off. He loves doing this.

It took him minutes to master. I am still so proud of him.

He is now 7 months old, todays achievement was that he cocked his leg for the first time on a walk. Jay was so proud of him. I missed it as I am unable to accompany them on the walk due to the distance and terrain.

He has given us such joy in an awful time. I really wouldn’t be without him.

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.