Dembe, dinky dot

Mr Myasthenia Kid is on holiday from work this week, so it will just be a quick post. I say he is on holiday but he has just worked a night shift doing the stock take, so whilst he is sleeping I thought I would quickly write a post.

I have been purposefully keeping Dembe – whom I could write about for forever and a day, off this blog as he has his own blog over at The Dembe Diaries . He is such a good boy and a massive part of my life that sometimes he deserves a little post about him here.

I can’t believe our little dinky dot, as I used to call him is going to be 2 in November. It seems to have flown by so quickly and in those two years we have been through so much together. I really wish both my Gran and Pam could have met him, they would have both loved him. We still attend obedience training ( when it is being held we had a break due to lock down) once a week and we all thoroughly enjoy it. Dembe has his good nights and his bad nights, like every one does. Same as Mr Myasthenia Kid has good night and bad nights when he is handling him all depending on how tired he is. Tonight could be fun after he worked a night shift last night and he hasn’t had much sleep. 

At the start of this year Dembe got bumped up from the intermediate class to the advanced class as he was doing so well. We are so proud of him and ourselves as he would never have achieved this without Jay and I doing the work outside the class room as well. Dembe loves to be busy doing things. Although his favourite thing currently is to lie on his dads lap and have a long cuddle. He is a real daddy’s boy but he also loves me and when we are at training when he has done something well he still looks to me to get some praise. Quite often if we are all sat on the sofa he will give his dad and kiss and to ensure I am not left out he will give me a quick kiss as well. 


He is a funny bugger who is very set in his ways for a dog that is less than two. He does like his routine and isn’t happy if we aren’t sticking to it. He gets unsettled and needs lots of reassurance. He still takes my socks off for me most nights, I have to hide my feet once he has done it or he will lick them and I can’t stand that. He loves to nudge things with his nose, just yesterday he managed to turn on Mr Myasthenia Kids play station by hitting the on button with his nose. If you aren’t paying him the attention he thinks he deserves to get he will nudge an item off the table beside you with his nose. He is a real bugger for that. 

His latest self taught trick though is helping me up off the floor. If I am on the floor, usually for pilates and sometimes as I am unwell or have fallen, he now waits for me to get on my hands and knees, then he puts his head under my head and pushes up. When he first did it I wondered what on earth he was doing although it did make getting up easier. The second time he did it I was like “oh right, you are helping”. Now he does it most times, sometimes a little enthusiastically leaving me with a bruised jaw line but due to EDS I do bruise easily.


He has also started picking up items I drop and bringing them to me. Again another little job that he has taught himself to do which is incredibly useful. I am always dropping things when I try to carry stuff so I am very grateful he now see’s it as his job to give me a hand without prompting.

                                                    His speciality is sock retrieval

We have been brave and taken the plunge and since May Dembe has been going out with a dog walker at least once a week. We book him in when Jay is working a late night as Dembe needs a proper walk in the afternoon so that he is nice and chilled in the evening for me. He can get very excitable and exuberant when he isn’t sufficiently worn out from physical exercise. So it makes life easier for all of us for him to have that walk. The first time the dog walker showed up Dembe ran up the stairs and I had to coax him down. After those first few walks he was fine, now he knows when Jay is working late to look out for Martin’s van and his tail goes like crazy when he see’s it. He runs down the drive ( once he has been clipped onto the lead) and jumps into the back of the van without a backwards glance. I still find the hour or so I am in the house without him extremely odd. I usually try and find something to do that will absorb me so that I don’t sit and fret about him. He is so very precious to the both of us.

I have never known a dog with so many toys. He now has two toy boxes, one upstairs in my room and one in the lounge. He adores his toys and he never deliberately damages them, they are usually damaged through games of tug. His favourite game is Nudge, where he will nudge a ball with his nose towards you and you have to nudge the ball back to him with your foot or hand. He will play this game for hours. He also likes playing find it, where we hide a toy in the house and he has to find it. We have upped the stakes now and hide it in the washing machine, under the bed but he always finds it. He can get bored of that game quite quickly. When that happens he runs off with the toy and won’t let you have it back. It is a good game for wearing him out mentally.

Out of all the dogs we have owned Dembe is the most affectionate, he loves to lie on your lap and have a cuddle. He loves giving kisses whether they are asked for or not. He really is a dog in a million. He will be the dog that all other dogs are compared to past and future. He is my angel and I wouldn’t have got through the last two years with out my Dembe dinky dot.

Turd Cake

I will be honest very little about my health gets me down. Well not strictly true, the migraine situation ( up to three a week) was pretty trying but thankfully that has settled, plus when I have a CSF leak flare up of symptoms but that is more of a freak out along the lines of what if it doesn’t heal and I have to spend the rest of my life in bed ? I don’t know if I can do it. The injuries from the road traffic incident are really messing with my mood at the moment and I feel a bit of a flake due to it. I put up with a lot of shit that seems to be continually thrown my way but I am struggling to deal with the constant pins and needles in my left arm / hand along with the burning pain that comes with it. Topped off with a numb left buttock which is the icing on top of the turd cake, I am struggling.

I spent last week feeling really tearful, the physiotherapy session from the week before had done nothing but make everything hurt more. Six weeks after the accident and instead of things improving things are getting worse. The pain is like electric shocks, you never know what movement will prompt the sharp zing of pain radiating either from my neck or my upper back. My left shoulder is grating in the socket. I have had enough, it is as simple as that. The only time I am free from the pins/ needles / burning / numbness is when I am asleep and even then I am being frequently woken up by the pain in my neck. And just when you think things couldn’t get worse they do.

On Saturday I had a video call with a private Doctor for an assessment of my injuries following the car accident back in August. I had all my notes written out, a list of my prescription medication printed out, I was all prepared for the “meeting” which I was anticipating to last around 30 mins to an hour. So you can imagine my frustration when I was rushed off the phone in 8 minutes and 22 seconds. I was told that my injuries would take months to heal and that he would organise 8 sessions of physio therapy. Basically as soon as he found out I didn’t work, it didn’t matter how my injuries were impacting me. I was sat dumbfounded in shock afterwards trying to work out what had just happened. Every time I went to speak I was talked over. He was completely clueless about EDS, so when I say my range of motion is reduced, it doesn’t look like it as it has just reduced to a non EDS persons range of motion. You need the input of someone who knows me and has been treating me for years. Yet my whole case could be settled on the basis of this arsehole doctor. I cried. I cried because I felt like I hadn’t been heard, I cried because I felt like I hadn’t been believed and I cried because yet again I was going to have to fight another battle for a situation that hadn’t been caused by me but some stupid twat driving a BT open reach Van and him not paying due care and attention.

I was shocked at how low I was and how easily the tears came. I am not one that dissolves into tears over stuff that is to do with me. I will cry at tv shows etc but I am not one to sit and sob about my life. I made that decision a long time ago and felt that it would be a waste of time and energy. But Saturday I just didn’t care. It was just another punch in the gut.

I’m afraid to say I just wallowed a bit Saturday morning. I wrote a very strongly worded email to my solicitor pointing out all the issues i had with my 8 minute and 22 second health appraisal. I really wouldn’t mind but that doctor will be being payed hundreds to churn out these assessments over video calls and it appears there is no quality control at all with them. I then was angry, angry that as soon as he realised I was disabled and not part of the work force that my life was some how worth less than other peoples. WTAF??? 

So after Jay had popped home for lunch and I had a bit of a vent to him I decided that I needed to push myself and do something on my embroidery machine. I hadn’t touched it all week as I had been feeling like everything I do is shit, I couldn’t concentrate and sitting at the machine isn’t very comfortable even with extra pain meds, special cushions and hot water bottles. I set myself the target of completing one piece. Within 15 minutes I was feeling much more relaxed and was actually enjoying what I was doing. I ensured I had lots of breaks and pottered about on the long stitch outs. I actually managed to get two blocks done and it was such a mental boost for me. It really cheered me up after spending the last 4 days on the sofa feeling sorry for myself. 

By sitting at the embroidery machine and forcing myself ( it felt like pulling teeth initially) to be creative, I proved to myself that I was good at something and that my life even with this constant nerve pain, was worth something despite the way the doctor had made me feel earlier on that day. I was in pain when I finished, it wasn’t easy but I did feel like I had accomplished something. Something other than wasting the afternoon feeling sorry for myself. 


For me being able to be creative is better than any drug, it lifts my heart and fills me with joy. It makes me feel good about myself. So on Sunday I spent some more time at my embroidery machine not because I was forcing myself to but for the first time in ages I wanted to.

These are for some gifts that I am making. Hence why I have started Christmas projects now as everything is taking me such a long time to do as it has to be done at a much slower pace than normal. I have even managed to get some blocks of my spells and potions quilt for Halloween started.

I am lucky that I am a) able to do these pursuits and b) can afford do them. I count my blessings every day but that doesn’t mean that everything is wonderful in my life. It just means I have a distraction from the constant nerve pain. Nerve pain which is the icing on the Turd Cake I am currently dealing with.