Those of you who have been following my blog for a while will know that sadly I lost, well we lost our beautiful Weimaraners 7 days apart at the end of last year beginning of this year. I let you know that we had also got ourselves a beautiful yellow Labrador ( he has a bit of fox red in him as well). I haven't really spoken about him much here, not because he is some state secret but because mainly my blog has always been about the Weimaraners and because our lives have changed so completely with losing them and having Dembe.
Mollie
Frankie
Willow
Our lives have always revolved around our dogs and they always will. With the Weimaraners our lives were quite restricted, when left they would destroy our home ( chewing furniture, banisters, carpets basically anything they could get their teeth into) and sing to the neighbours. It meant if they were ever left we would have to pay for a dog sitter or beg friends to come and sit with them. They were fine as long as they had someone with them they just had awful separation anxiety when left alone. We could have taken the easy way out and given them up / rehomed them. If you ever look on websites for dogs you will always find Weimaraners on there 6 months to a year old who are being rehomed because they can't be left alone without causing damage or noise. It breaks my heart.
We decided as that as we had wanted them we would have to adjust our lives accordingly. It meant no going out together as one of us would have to stay home, ( they also destroyed the car if left in that with Willow eating the handbrake one day!). They dominated our lives for 15 years but although it may seem like a huge hardship they gave us so much love and so much companionship for me I never saw it as a hardship. We loved them dearly and due to that love we were prepared to put our lives effectively on hold for the time they were with us. Those years went past in the blink of an eye. The hardest part of those 15 years was some people just not understanding that our dogs would always come first and that we would miss events because of not being able to leave them.
Now I am not slagging of the Weimaraners, a lot of their problems were caused by me and Jay. I fell ill 3 months after Frankie and Willow were born and due to the stress of me being ill and genuinely not being well enough their training was rubbish and so was their socialisation. They also got attacked several times when they were puppies by other dogs, so they became nervous aggressive. Walks became so stressful it was easier to walk them at 5am, which then became 4am which then became 3am. Jay would then be up for a few hours and then would go back to sleep getting up time would depend on whether he was working that day or not. Evening walks would have to take place in dark on the common like the morning walks so that they wouldn't bump into any other dogs. It was stressful, we were always worried about dog owners who had no control over their dogs who would let them get up in Frankies personal space despite us telling them he was nervous aggressive.
When Willow passed away in 2017 things got easier, mainly because there were only two dogs to control and the fact that she would whip the others up into a frenzy. We missed her greatly but it would be a lie to say that things didn't get easier. Frankie no longer reacted to dogs out on the walk, he stayed well clear of them but you no longer had to worry that he would get aggressive due to his fear. Mollie was always really good with all dogs and we never had any problems with her.
With Dembe it has been a clean slate, training started from the minute he arrived home and has been consistent. We don't get dictated to by him when he goes out for a walk, where as the Weims would start crying and pacing due to being creatures of habit. For Dembe we have deliberately kept his walks unscheduled, so he doesn't know and therefore doesn't start acting up demanding a walk. He fits in with us not us with him. We don't love him any less or any more than the Weims, we just decided that we wanted some of our life back.
The change in both of us has been immense. Jay used to suffer terribly with fatigue, we put it down to his methotrexate for his psoriasis and the stress of looking after me and the dogs. In reality now we know that it was night after night of broken sleep. Being awake for a few hours in the middle of the night from 3am until 5am then going back to sleep was destroying him. He never wanted to do anything or go anywhere because he was always so exhausted. Who can blame him he was dealing with extreme sleep deprivation. What I haven't said is that when he was on an early shift ( quite often he would have had a late finish the night before so he wouldn't have gone to sleep much before 11pm) he would get up at 3am and that would be him up until he went to bed that evening.
Jay is now up every morning by 7am, 7.30am at the very latest. If he is on a late night we get to do stuff all together before he goes to work at 12pm. We have a cup of tea and have a chat and then we will take Dembe out. Depending on how I am feeling or where we are going means that sometimes I can join the boys using my mobility scooter. Dembe is limited at the moment as to how much exercise he can have so that we protect his joints . Currently he can have 20 mins a day in just over a weeks time he can go up to 25 minutes as it is 5 minutes for every month of his age.
Jay and I would be lost without him but we have really struggled to accept over the last 10 weeks that he is actually ours. That probably seems a really weird thing to say but I think because he came into our lives during one of the most traumatic periods we have lived through, although we loved him immediately there was almost this feeling that he didn't belong to us. I would forget he was in the house with me and he would bark and I would jump out of my skin. His care was never, ever compromised it was just we were overwhelmed with grief and all this love we had for this little ball of fluff.
He seemed so very little when we first got him home at 8 weeks, despite the fact his weight has increased by at least 10 kg and he has got so much bigger he still seems very dinky to us. After having three huge Weimaraners for over a decade I am guessing anything would seem tiny. He is a very affectionate dog, he loves cuddles and kissing. He really loves Jamie and they have a little routine that when Jay gets into the car he looks into the back and Dembe smothers him in kisses. For me Dembe is my little shadow, I can't go anywhere without being followed. He has also started to pick up on when I am unwell and adjusts his behaviour accordingly. We are not at the stage yet where he will happily lie on the bed with me all day but he will snuggle up next to me on the sofa. When I had a migraine Sunday afternoon and went to bed at 6pm he came up with me and settled down with his head over my feet. Just like Frankie used to. He also likes sleeping curled up on the top corner of my pillow. He gives me a little kiss goodnight when The Archers theme tune comes on at the end of the programme and settles for the night.
Without him Jay and I would have fallen apart. We have both really struggled mentally and physically over the last three months. I finally have started feeling more like my old self again but I am very quick to tears. Anything about Rainbow Bridge and I am gone. If anyone posts that their dog or cat etc has passed away I break my heart. The pain is still very raw but I am able to function in the world where as initially I felt so disconnected and as if I was trying to work on autopilot.
I have neglected a few friendships because I have just been overwhelmed by the grief of it all. I know some people just wont understand at all how you could be so upset by an animals death. Believe me you can. I wish every night the last image in my head wasn't Frankie passing away or seeing Mollie unable to walk or lift her head due to the catastrophic stroke she suffered. I had to stop watching this weeks episode of the walking dead when the heads on spikes mouths were moving despite them being dead. Frankie's mouth muscles twitched for the whole time I lay on the floor with him after he passed away. It was too much and sent me straight back into flash backs of losing him. I was quite proud of myself being able to write all this without sobbing but I have fucked that up now. I hope some day those horrific images stop waking me from sleep and stop being the last images in my head before I fall asleep because I do know happiness despite being so sad.
Without Dembe I wouldn't be here, it is as simple as that. I could not have carried on under that weight of grief. I am not saying that to be melodramatic but for a few days there I wanted to die myself. My heart hurt and no one except Jay understood what I was going through. I have never seen Jay look as ill as he did during those 6 days that we had no dog in the house. When Dembe came home the colour came back into his face and it forced us to start living again. He is our miracle boy and our saviour. Even when he is being a wee shitebag.
If you would like to find out more about Dembe he has his own blog at www.thedembediaries.com
Some weeks I really struggle to come up with a topic on which to blog about. This is one of those weeks. In fact it was quite by accident that I remembered this morning that I hadn't written this week's blog post which is due tomorrow. Nothing like an unwritten blog post for you to find numerous jobs to do instead of writing! I have practically had to chain myself to the Chromebook so that something, anything gets written. Unfortunately this weeks struggle is due to my medication being altered.
The new dose of antidepressants has knocked me for 6, yes my mood has improved greatly but I am just exhausted 100% of the time. When I am up during the day I feel like I am working through a haze best described like you had a couple of glasses of wine with lunch except its 8am and you haven't been drinking. I may get a couple of hours in the middle of the day where I don't feel so out of it but then it quickly returns. That isn't the only side effect I am having.
Mirtazapine is known that it can play havoc with a person's appetite. On 30mg a night Mirtazapine did nothing to my appetite it neither increased it or decreased it. Now I am on 45mg a night and I am hungry all day every day. Its like being on steroids all over again. Despite being on my restricted calorie diet and the fact that I shouldn't be feeling hungry at all, I am battling daily to stick with it. The hunger hasn't subsided at all and thankfully although I haven't put on any weight, it isn't nice feeling hungry all the time and knowing that you can't eat because if you do, you'll be the size of a whale very quickly.
It's also making my dry mouth worse. I already drink an excessive amount day and night due to a faulty hypothalamus. Something I was born with, but it is getting ridiculous as the amount I am drinking through the night means hourly to half hourly I am getting up to have a wee. Lack of sleep or broken sleep is not helping the feeling of having to push myself through a fog to function. In fact as I am writing this I am realising that although my mood has improved it is coming at too higher price. I haven't even told you about the worst symptom that the increase of medication has caused and that is constipation - there I said it, I'm full of shite!!
My bowels have always been healthy and regular. The only times I have ever had problems going to the toilet have been due to codeine, one dose of that and I am horrendously constipated or when my bladder and bowel decide to shut down for 24 hours. So I was shocked to discover that a well-known side effect of Mirtazapine is constipation. I have had enough to be honest. After two days of struggling to go and feeling like the process was more akin to giving birth than having a dump I decided I better take some laxatives. Again something I have rarely taken in my life. Morphine has no impact on my bowels - which causes all my doctors much consternation because apparently that's just not normal. But it's true I have no problems going at all. But I am in agony due to the constipation the increased dose of Mirtazapine has caused.
Of course I could have just eaten an excessive amount of Sula drops - the constipation would have been over much more quickly. Instead last night I took a mega dose of Senna. Now I have been 3 times but I am still in pain. I managed to go without any problems but I just feel like I am still full of shite and it is making me feel well crappy to be honest.
Due to having a history of bowel adhesion's and having to have them operated on I don't tolerate stomach pain very well. It is a pain that really gets to me quite quickly. Maybe I am over sensitive to it but it is not something I am prepared to put up with. Taking senna every night is not an option as all it does is cause my bowel to be overactive for the next 24 hours and causes me adhesion pain. So the only solution to the issue is to stop taking the 45mg dose and drop back to the 30mg one. I will obviously monitor how my mood is doing and see the doctor again if I need to but feeling better mentally is coming at too higher price and too much pain. I have been on the increased dose for over two weeks and if anything the side effects are getting worse and not settling.
Another thing I have noticed is that it has taken away my drive to sew or embroider. I haven't really wanted to do anything and I am having to force myself to do anything at all creative or to do something other than just sit in front of the TV for hours at a time. Most of the time I can't even remember what I have been doing. It is a crazy situation to be in.
With all medications you have to weigh up the benefits and risks. The risks to me is that I am just not feeling like me on the increased dose. I don't like feeling like this. Maybe what I have taken has been enough to get me over this sticky patch. I will soon find out but I know I am not willing to persevere with side effects that are this bad on so many levels.
I know that this blog is called the Myasthenia Kid and yet of late I barely mention any Myasthenia like symptoms. Let me assure you I suffer almost every day with MG like symptoms. I think after my treatment at the hands of Doctors in 2009 and 2010, I just shut down. Those doctors who were the supposed experts did such psychological damage to me that I struggle even now ten years later to vocalise when the MG symptoms strike.
Currently the ptosis I suffer with ( daily to varying degrees) has been diagnosed as idiopathic hemifacial spasms ( and they ignore the fact that mestinon cures these "spasms" in around 20-30 minutes). The treatment suggested back in 2017 was Botox injections, funnily enough though no one has stepped up to do these injections, could that be because 1. I don't have spasms my face is paralysed and 2. Botox and MG are contraindicated?
Its like the home oxygen supply I have, apparently I don't have any issues with my breathing well other than the suggested breath holding by the twat of a pulmanologist I saw ten years ago..... yet I have an oxygen cylinder and an oxygen concentrator. Do you see the running thread here at all? One might suggest there was a hell of a lot of ass covering going on here.
I have breathing problems on quite a regular basis. A lot of the time the shortness of breath can be alleviated with a booster dose of mestinon... you know the tablet that doesn't work. On my very bad days I will use my oxygen concentrator. Tonight maybe one of those nights. I know why this is happening it is because I have been pushing myself so hard physically the last few days trying to get jobs completed. Its the first time in around a year that I have done this much and as usual I have totally ignored the fact it will knock me on my ass.
Due to me having PoTs I take mestinon ( also known as pyridostigmine bromide). It raises standing blood pressure, I can't say that I have noticed any effect on my blood pressure but it really helps with the Ptosis and muscle strength which I lose as the day goes on. But obviously the muscle strength thing is all in my head and the ptosis resolving is the placebo effect. I just think it is another case of arse covering.
Some days when things are really bad the mestinon does nothing. It doesn't help the breathing or the ptosis. Those days I stay in bed and pray that I don't need the hospital. Years ago I told Jay no more trips to hospital unless I was unconscious or I asked specifically asked. I don't do hospitals anymore because I always get treated like I am a time waster who "thinks" I have Myasthenia Gravis.
Even though I have multiple conditions now diagnosed, some doctors still ignore all that - even with the positive test results and jump straight onto the fact that I was diagnosed by a neurologist with somatiform disorder - notice I say a neurologist. Which is a bit like asking a cardiologist to do spinal surgery. They also like to bring up my mini breakdown in 1999 - yes 20 years ago and use that as a reason why I am unwell. Despite the fact I went many years without any depression due to the hard work I put in through two years of counselling and CBT.
Yes at the moment I am suffering with depression and anxiety which I would consider perfectly normal considering the losses I have dealt with in the last two years. I have lost 4 friends, my grandmother and my three dogs. Obviously Frankie and Mollie passing within 7 days of each other really knocked me back. I ended up speaking to a doctor last week - more on that in a second, and had my antidepressant dose raised and was given some diazepam for when I can't get out of the panic cycle. Thankfully since the antidepressants have been increased and I have the diazepam I have been feeling quite a bit better. It's just as well as I have to be honest I really wasn't coping, I was doing a great job of masking it and some people can't get their heads around high functioning depression. Believe me I can keep going even when I feel dead inside. It takes a lot for me to finally crumble. And last week it finally happened.
Anyway a slight diversion just for a laugh, I am on the phone breaking my heart to this doctor, saying about the panic attacks, the anxiety, the grief and the depression. I kid you not I was asked if I had considered taking Kalms ( see what they are here ) and then the piece de resistance had I tried rescue remedy (here ) if I hadn't been breaking my heart I would have launched at her. What the hell was she doing ??? look at the medications I am on does she not think that I am way past some fucking Kalms and 3 drops of rescue remedy? I couldn't get off the phone quick enough, despite that she still managed to bang on about using meditation.
I pointed out it doesn't work for me and leaves me feeling worse. I do a guided meditation when I can't sleep and my mind goes nuts with useless information flying through it. It makes me seriously worry that if someone was suicidal this berk would have offered them St Johns Wort and wondered why they hung themselves. Obviously the last sentence isn't funny its a genuine concern, when depression isn't taken seriously and the problem here was a locum gp who wasn't aware of my magnificent mental health history, they may try to fob someone off with mindfulness. Mindfulness is fine when people feel a bit down or stressed but it won't treat someone who is very / severely depressed. Same as rescue remedy will not treat Generalised anxiety disorder or OCD. It is only because I can and do speak up for myself that I got what I needed, increased meds and some extra meds. I knew I just needed a bit of breathing space to put myself back together. Had I not forced the issue, well I don't want to think about it really because I was teetering on the edge of becoming seriously unwell.
Anyway I digress, don't I always. The way I have been treated by the medical profession especially any time that Myasthenia Gravis is raised has left me with a fear of doctors and a phobia of hospitals. I have spoken to so many other people with chronic illnesses who say the same. We stop going to the doctor because we know we will be fobbed off.
Take the doctor in July who told me the pain in my neck and the numbness in my arm was stress. In December I went back, because I was now losing my grip and the numbness was worse and I am told I have an impinged nerve, I need physio but the doctor believes I will probably need surgery to decompress the nerve. Thankfully I have avoided that by paying to see my private Physio. Someone who works with me and lets me know that she understands I know my limitations and she can't push me.
So no the MG symptoms haven't disappeared I doubt they ever will. They will just be a host of additional symptoms that no one is prepared to say without a positive SFEMG or blood test what it is and lots of medical arse covering will take place.
Me on Monday afternoon. Does this look like a spasm to you or paralysis? As you can see both eyes are trying to close. My right pupil has drifted to the side of my eye socket. The left eye is desperately trying to stay open by pulling the eyebrow up but as you can see the eyelid is trying to close. The fuckwittery I have to deal with is outstanding!
Last week I wrote of my guilt at being happy, although I received lots of supportive comments, my emotions are still all over the place. The last week or so I have cried everyday over Mollie, Frankie and Willow. I think that is why I have been trying to occupy every minute of every day lately through some sort of creative endeavour or to get out of the house, so I can't sit and brood.
I am beyond exhausted, last week Jay was on holiday and we spent the week catching up on jobs that have probably been outstanding for 12-24 months. Obviously I am very limited in what I can do and with Dembe ( our nearly 16 week old yellow Labrador pup) it is very difficult to do things together. We made a massive dent on the list of jobs that need done but as anyone who owns a house will tell you, one job soon multiplies and becomes another 4.
We have sorted out our bathroom, its been in a state of almost done for around 10 years I kid you not. Little jobs needing done but neither of us having the energy or inclination to get it completed. I finally cracked and decided a week before Jays holiday enough was enough and it would get completed. Initially it was just that the grout and silicone sealant would be redone. That however has evolved into the bathroom being redecorated - overdue as I believe it was last done possibly 5 years or more ago. Which then means that before the walls are painted the woodwork gets repainted. So the thing spirals. All because I can't spend any free time doing nothing because the minute I do the sadness overwhelms me.
I have been working hard on the creative side of things as well. For a while I didn't want to do anything, I didn't know if I would ever be able to do anything again. Both days that the dogs health suddenly declined I was sat at my embroidery machine. I blamed myself for not paying them enough attention. To not sew or give myself a creative outlet was a way of punishing myself. Because as I stated in last week's post I love to make myself feel guilty.
So I thought I would share my makes with you. I am limited with how much I can type this week as my shoulder (right) is grinding away and popping out, my wrists and fingers are also playing me up. So typing is uncomfortable.
I have been making this one for a friends granddaughter. This will get turned into a cushion at some point over the next few days, depending on when my shoulders and wrists / fingers decide to cooperate.
I'm not happy with either the hedgehog or the sheep as I rushed the hooping and as a result they have puckered. However these two will be turned into cushions for our home and I was desperate to see how this design stitched out.
I love the highland Cows design, this was from the same Etsy seller who designed the sheep and the hedgehog. This one will be a cushion for us. I am toying with putting this design on one of my blank sweatshirts.
The Charlotte cushion is a Christmas present for my niece - you probably think I am bonkers but I like to work well in advance in case my health suddenly declines. That way I don't feel stressed out in December trying to make lots of gifts to a deadline of when Jay will drop them down to our relatives.
The owl Cushion - I bought this design around Christmas time. Due to the dogs passing I never got the opportunity to stitch it out. So I had a go a few weeks ago. I am really pleased with how it turned out.
The Evie cushion was for a friends Granddaughter. This will be the last one I stitch out of this design as it has been poorly digitised. Every time I stitch it out I have problems in the same place. I have invested in a new unicorn design now!
I made a job lot of doorstops, many of these will be gifted during the year or at Christmas. These doorstops have washable covers as the bottom has an opening that has velcro to fasten it. Inside I have used cat litter ( clean obviously) to weigh it down. I place the cat litter inside a ziplock bag and also use an elastic band so it has two forms of closures to stop any leakage! I enjoyed making these door stops, it made a nice change and was a challenge for me after making so many items the same on the run up to Christmas and with making cushions.
As I haven't posted a photo of Dembe on here for a few weeks, I thought I would share this with you.
This is me and the little man. He sleeps every night with his head on my pillow. Most nights his nose is touching my head or face. I love feeling his breath against me. He is such a loving little chap. Without him I'd have never made it through the last 10 weeks.
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