Physio v Torture is there a difference?

I wrote back in December that I had gone back to my physio Jane, who is just brilliant. I had been having trouble with a pinched nerve in my neck which was causing areas of numbness, pins & needles and burning sensations. Thankfully working with her has reduced these symptoms massively to the point now where the pain is limited to my neck and I have the proper feeling back in my arm and hand.

So far my physio sessions have been ultrasound treatments and deep tissue massage / manipulation. Whilst deep tissue massage may sound blissful and you have the image of a spa, let me burst that bubble for you. It’s really fucking painful. The evening after treatment is usually spent in a whole world of pain with a humdinger of a headache. Tonight is no different. Although I know that things are improving massively it just seems so unfair that I get so much pain after each session. I know I will be fine by the morning once my overly reactive body has calmed down again but it doesn’t make it any easier.

I spend a lot of the session hovering over the massage table as the pain makes me levitate. Some times when she is working on a certain point initially it will be pain-free but as she increases the pressure she can hear me take a sharp in take of breath. That is the first warning it’s getting sore. After then I tend to try to jump away from her.

My next physio goal is to start some gentle Pilates exercises. Basically my muscle tone is horrendously poor. Its my own fault as I worked so hard on it in 2014 and I let it all go to waste when I developed my spinal fluid leak. A lot of things went to pot then all of which I am working hard to put right – diet went out the window, Pilates and just taking care of myself. I am determined to put this right. Even though I know that initially my core muscles will not be happy, probably none of the muscle groups I will be activating will be but it will help stabilise my joints and support my spine. 

Over this last week I have been having terrible problems with my joints, lots of grinding, subluxations and pain. My muscles have equally been naughty I have had muscle spasms at the drop of a hat. My feet seem to love going into spasm – that is very sore and it tends to take them ages to come out of it. The middle of back where the bra clasp would sit is also going in and out of spasm on a regular basis. I wonder genuinely, if it is to do with the storm the UK has just been battered by as prior to that my pain levels had dropped for the first time in well years. I know we EDSer’s can be sensitive to barometric pressure and its the only thing that is different.

I’ve had to get a yoga mat to perform my exercises on as a little devil disguised as a cute little yellow Labrador decided to use our grey rug in the lounge as a toilet twice … that we know of. So I thought we had just had two weeks of 100% no accidents and maybe he had been using the grey rug? The house certainly wasn’t smelling of dog pee. We were going to replace the rug anyway, it now just been removed with no replacement planned until the house training is for sure 100%.

My physio had me run through some extra exercise treats she wants me to attempt… I don’t think I will be able to take a deep breath tomorrow let alone belly laugh. I am always amazed at what tiny Pilates movements can do. I know that they are brilliantly effective but I also know due to the current state of my spasmodic muscles I am going to have to go very gently.

Even with the current state of play with my muscles and their desire to go into spasm with no warning, I have managed to get back to some creative work. I have done quite a bit on the embroidery machine, I have used my overlocker and my sewing machine. I managed to make 5 cushion covers last week. All of which I am very pleased with, there are little things that I could have done better but that is me being stupidly hard on myself.

After sharing with friends the birth announcement cushion I had made for a friend of ours, two people asked me to make them for as well. This was a nice surprise as after not sewing ( properly) for over a month and having no desire to I had lost my confidence.

I also made two book lovers cushion covers, these will be gifted later on in the year.

This one will also be gifted later this year.

This week I wanted to see how this design would stitch out, I bought it in the sale but everything turned to rat shit and I never got an opportunity. As soon as the urge to create came back I really wanted to see how this design would come out.

I still haven’t decided If I am going to frame this or make it into a cushion cover. It took an age to stitch out over an hour and a half, just under 60k stitches and 21 thread changes. I was exhausted by the time it finished and in pain. My muscles are so weak currently that I can’t support myself sitting up for any length of the time.

I am feeling happier at the moment, although I ended up crying over Mollie and Frankie today, it came out of nowhere. I feel like me again after being under a huge black cloud for weeks. 

Now to take some pain killers thank goodness I am not back at the torture chamber, I mean physio centre for 4 weeks as my lady is going skiing.

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Getting back to normal, if there is such a thing.

Around two days after I wrote my last post “Washout” I ended up contacting my doctor and was prescribed antibiotics. I had been running a temperature for around a week and I just wasn’t feeling any better. 

 
Wednesday morning (30th January) I woke up in the middle of the night feeling like someone had smacked me in the face with a shovel. My sinuses hurt, my teeth hurt and I felt violently sick. As I quite often get migraines like this I decided to try to get back to sleep, it didn’t work. As the morning wore on the pain was increasing where as my migraine attacks last 12 hours at the same intensity I had to concede that this wasn’t a migraine, I had sinusitis and probably a chest infection. When I described my symptoms to the gp she agreed and I was given a 7 day course for amoxicillan. No wonder I had been feeling so awful.
 
After 3 days on the antibiotics I was feeling almost human again. However as usual the antibiotics did a number on my innards which required me to take at least 6 imodium a day. The diarrhoea was so bad it left me feeling drained and triggered off very painful spasms causing me then to have bowel adhesion pain. I stuck with them until the end of day 5, after that I just couldn’t do it anymore. 
 
I could cope with the exhaustion levels if my pain levels hadn’t suddenly just ramped up. Out of nowhere I am back to having extremely cold legs which have to be warmed up by a hot water bottle or by sitting on my electric throw. When going out in the cold and believe me it’s not that cold for this time of year, yesterday it was between 6 and 7 degrees Centigrade, I was in agony with my hands despite having my arthritis gloves on and my legs were aching despite having leggings on under my jeans. I had just gone through a really good period, pain wise and had barely been touching my oramorph which I use for breakthrough pain but as of two days ago, I am taking it every 4 hours when awake to try to knock down the pain levels I am currently experiencing.
 
At the moment there seems to be no happy medium temperature wise. I am either hurting due to the cold or stripping off my layers because I am suddenly boiling hot. So hot that I am sweating. An hour later I am back to freezing again and this cycle repeats itself throughout the day. I wish I knew what I could do to combat it. It’s not like the flushes I was getting before taking the red clover, black cohosh and the sage leaf supplements which have done wonders for my hot flushes. This is a temperature regulation issue. And temperature control is part of the autonomic nervous system. I guess it’s just adding in another element of fun.
 
On a happier note Dembe is settling in very well, you can read about his adventures at www.thedembediaries.com I publish every Monday letting everyone know what he has been up to over the previous week. I don’t know where I would be without him if I am honest. It is exhausting though looking after a puppy when you compare looking after adult dogs who are independent and happy to be left sleeping for most of the day.
 
Dembe is very close to me but I wouldn’t expect any different, he and I are alone together all day ( around 11 hours) bar Jay coming home for 30-40 minutes at lunch time. Dembe loves Jay too, you only have to witness the furious tail wagging when Jay comes through the door to know that. But he is a mummy’s boy at heart. He loves nothing better than curling up at the end of the sofa and sleeping, as long as I am at the other end. 

 
 
 
When I get onto my sewing machine or embroidery machine, he sleeps on the bed I made him in the kitchen. Due to feeling so rotten, not a lot of sewing has gone on. However I did manage to finish this birth announcement cushion, which is a gift for a friend to celebrate the arrival of his daughter. By the time this blog post is published the gifts recipient should have it.
 

 
I am really pleased with the cushion as the feet are from one design and the text is from an inbuilt text on my embroidery machine however I had to get the placement and size of the text right so that the cushion looked balanced. 
 
I used a product called Sarille, which is a type of interlining mainly used on curtains. I saw in various groups lots of suggestions for using wadding behind embroidery designs that were stitch dense and being sewn onto lightweight fabric. I had loads of the Sarille lying around from when I used to do my subscription box. It has given the cushion a nice bit of body at the front and it has also ensure there is minimal puckering. 
 
It’s the first bit of sewing I haven’t had to force myself to do since Frankie and Mollie passed away. For a while there I didn’t know if my sewjo would ever come back or if Dembe would sleep enough for me to manage to get anything done. Jobs are taking me longer as I now tend to wait for Jay to be home before sewing anything. Embroidery is different as I can get up and move away ( when the machine / thread is behaving), so I can keep an eye on Dembe. He is very used to me doing bits of embroidery, he  will lie on his bed in the kitchen and go to sleep. Puppies do sleep a lot although when they are manically running around, chasing their own tails it can seem like they never sleep!
 
I have also managed to get two other bits of embroidery done today, birthday presents for March. I do like working ahead so that I don’t feel under pressure. Whilst I am in the mood to be creative I tend to go for it. Its only in the last few days that I have felt the creative juices starting to flow again. That has as much to do with getting over the infections as it does with dealing with the grief losing the dogs caused. 
 
Its taken 4 weeks for me to feel anywhere near normal and it is still very raw. I am managing to go days without crying where as in the beginning I was lucky if I could go an hour without breaking down. 
 
I am finding it very difficult at the moment to motivate myself to write this blog, mainly because the dogs, our Weimaraners featured in it from the very beginning. They are what kept me sane and kept me going, when it would have been incredibly easy just to give up and not fight anymore. It is taking some getting used to being without them. It’s a new normal and it’s going to take a while to get used to it.
 
 

Washout

 

Well the last week has been a bit of a washout, on the day my last post was published I started to come down with a nasty virus. My throat felt like I had swallowed a packet of razor blades, I started to ache all over and my temperature started shooting up. Within the space of a few hours I had gone from feeling ok to wanting to crawl into bed and cry.

Thursday was also hard because Frankie and Mollie came home to their resting place. It was a really emotional day. Jay and I wanted them back home with us but it also meant it was final and we would have to accept that they were gone. They have a beautiful spot on our bookcase in their Emma Bridgewater pet bowls with their names on.

I can’t look at the shelf at the moment I find it too upsetting. I miss them both so much but particularly my Frankie. He would have loved Dembe as he was always crazy about puppies. Whenever Jay took him to the vets and there was a puppy there Frankie would cry until he was allowed to go up and see the puppy. 

I remember him when we had the 2nd litter of Weimaraners and he had them hanging off him, all different places and some quite painful and he never batted an eyelid. He was so very gentle when it came to puppies. He didn’t like other fully grown dogs much ( other than Mollie his mum and his sister Willow, who we lost in 2017) but puppies oh how he adored puppies. I know he would have adored Dembe.

Obviously due to the emotional battering we have taken over the last few weeks both our immune systems have been compromised. I rarely pick up any bugs that are going around even if Jay comes down with them 99 times out of 100 I will avoid them. So its unlike me to come down with something first. However over the last few weeks we have been out and about much more than we have been previously. I have mixed with many more people than I normally would. So I have probably been a lot more exposed to other people’s germs than I would have been before. 

I haven’t worn proper clothes since last Thursday I have just had to lounge around in my pj’s because I just don’t have the energy to get dressed. Some of my friends have also come down with this virus and have ended up quite poorly with both chest and sinus infections. Hubby has said they are dropping like flies at work and he is now starting to come down with a cold.

Dembe still brings us much joy and delight. He is such a happy pup, he just wants to please you the whole time. He has mastered sit and paw. We are working on his recall at the moment as he will be able to go out for his first walk on Thursday. Initially whilst we are still working on his recall, Jay will be walking him around the local streets teaching him to walk to heel and to get his bearings. He is desperate to get into the outside world. He loves sitting on the lounge window ledge and looking outside. 

I don’t know what we would have done without Dembe, this Friday we will have had him 3 weeks and he will be 11 weeks old. He has grown loads but is still tiny compared to our other dogs. I don’t even remember our other dogs as puppies. Probably because they grow up so fast. He changes every day and each day just brings us more joy. 

The really weird thing is Dembe on Friday seemed to know that I was feeling really rotten. Whilst I was lying on the sofa he wanted to sleep at the end of the sofa just like Nurse Frankie did whenever I was really poorly. Normally Dembe sleep’s in his bed in the kitchen, so it is quite unusual for him to spend long periods of time on the sofa with me. He was so calm all day Friday, like he knew he had to tone things down as mum wasn’t feeling well.

He also loves empty toilet roll tubes just like his Uncle Frankie did. He has a box full of toys but he goes crazy for an empty toilet roll tube. It is so sweet that he has some of Frankie’s ways about him, he also loves a ball like Mollie did and loves cuddles like Willow. We don’t compare him to our other dogs as that would be like comparing apples and oranges. It is just nice to talk about the others and him in the same sentence.

Well as I have heard from friends all over the country who have succumbed to this virus / flu-like bug I hope you all manage to avoid it. It is really nasty, I spent most of last night coughing as my throat kept drying out. Until next week…