Unhappy hump day

Until I joined Instagram I had no clue what Hump Day was, I quickly worked out that Happy Hump day just meant happy Wednesday. Hump day meaning from what I have surmised, that once you get over this hump it will soon be the weekend. It isn't a happy hump day here, I can't believe it is only Wednesday as so far I have endured vertigo, a migraine and now my back is buggered spectacularly and I am waiting on a phone call from the doctor where I will have to beg for diazepam so that I can move again this week!

When you have multiple health issues that like to spring up without warning a week can seem like a very long time. I always try to push through symptoms whenever I can because if I didn't much of my time would  be spent in bed. However when it comes to my back being in spasm I am severely limited, I can't walk because the action of walking sets the spasm off and I cant move my arms as that also sets the spasm off. I rang the doctors surgery gasping and crying, I am sure the receptionist thought I was being melodramatic! But I really wasn't the pain takes my breath away and makes me make horrendous noises as my back contorts and twists itself into all sorts weird shapes. I can only describe it as like wearing a remote controlled whalebone corset. You can be fine one minute and the next the sadistic twat with the controller has randomly made a group of muscles spasm and you can't move. The pain is so immediate and acute that it takes your breath away. The problem is that you never know what movement your back will find unacceptable until it does!

So I am typing this - I gave up with speech to text when it tried to translate my whimpers into text, whilst sipping a gin ( small ) whilst waiting for the doctor to ring ( it's only small because I don't want to be shit faced if and when they ring! as that's not classy at all). Thankfully the doctor has just rung and agreed that I need diazepam. Thank goodness. Although due to Jays schedule he won't be home until after 10pm.

I forgot to mention that Jay returned to work on Monday after being home for 7 weeks due to the medications he is on for psoriasis and asthma. His mental health took a nose dive and having been in a really awful place many years ago where he ended up being off work for 12 weeks and it took a good 5 years to get him on the correct medications so that he no longer had massive dips in his mood. He didn't want to end up in that place again so talked to his HR manager about returning to work. Now they have the social distancing measures in place it is much safer than it was before he was put on the 12 week leave. So he returned on Monday which left Dembe and I scrambling to sort ourselves out in to a new routine after a 7 week hiatus.

I knew on Sunday that I was feeling stressed at Jays imminent return to work - he decided on the Friday ( out of the blue and with no discussion although I was aware he wasn't right mentally ) and returned on the Monday, as I was really struggling to relax and kept getting funny heart beats, which happens when I am stressed. I tried my hardest to just let it go but it didn't work. I was also suffering with vertigo, intermittently during the day, so that left me feeling pretty exhausted. 

 I was on edge all day Monday, although when he came home on his lunch break and I could see how happy I was, I relaxed. So I was really surprised late Monday evening when I started to get intermittent zigzag lines in the corner of my eye. As there was no headache within an hour I put it down to a visual migraine but at 5am the following morning I woke up with the feeling someone was trying to insert an ice-pick in my eye. It is clear that all the health issues that have popped up so far this week have been a result of stress. 

Then last night after having an awful day with a migraine that just wouldn't shift, it lasted around 16 hours, I woke up 2 hours after going to sleep with awful muscle spasms in my right leg that had me crying out, the left leg was sore but the right leg had me squealing. Also the toes on my right foot were pulling back towards my shin. I hobbled downstairs and pulled a freezer block ( a cooler pack I think they are called in the USA ) and started massaging my leg with it. It helped but didn't get rid of it completely. As soon as the muscles relaxed they they just went into another spasm. It was so hard to walk. I ended up sleeping with the ice pack placed onto the back of my leg. I have no idea what caused that but I haven't had that happen in years - probably as long ago as me being a teenager and waking up with it after a night on the tiles and having a few too many sherbet's. 

My calf has been aching all day and my feet have been doing their weird spasms all day. Then the icing on the cake was my back going into spasm this afternoon. It was so bad I immediately called the doctors. I can't believe how many health issues I have had this week and its only Wednesday. When I have weeks like this I often wonder what the hell the rest of the week will go. 

I know this probably sounds strange when in reality I do have a lot of stuff going on but I get quite resentful when I can't do the stuff I want to do because my body has decided to let me down again. I hate the unpredictability of it and I hate that there is always something going on. When people ask me how I am I just lie and say fine because even I get bored with it and I learned years ago that most people really don't care they say it out of politeness when they ask how you are. I don't understand the point of asking a question that when you are asked you have to lie because that's the done thing. At least I have nothing planned this week.


Thank god it is hump day even if it's not a particularly happy one!

Dystonia?

**Warning if you hate feet, photo's of feet this post is not for you"

I have had painful spasms in my feet for as long as I can remember, for a long time I have just assumed that it is part of the Ehlers Danlos Syndrome I have and just put it down to that but I have always felt it was odd that it was only really my feet that were effected. EDS is a connective tissue disorder and connective tissue is everywhere throughout the body, so in reality more parts of me should be going into spasm than just my feet alone. After a particularly bad week with it back in late February / early  March ( before the world went mad ) I ended up consulting Doctor Google to see if there was an alternative explanation (differential diagnosis ) for what was happening, low and behold there was Focal Dystonia.

When I worked out what the issue was it was clear that the UK would soon be heading for lock-down and I didn't want to be in or around a health care setting for anything that wasn't urgent and when I say urgent I mean life or death. So I decided that when the madness had passed I would seek medical help but this evening ( I'm talking about Tuesday in Wednesday ) I have been in so much pain with the muscle spasms / contractions I am kicking myself that I didn't do anything about it. Not that there is a cure but I may have had better medications here to cope with or stop the contractions. When it is as bad as this the pain is no longer just in my feet but travels up my calves along the ligaments and tendons. I can feel the spasms moving along them until it hits my feet and then a wave of pain starts as my toes begin to distort themselves, in rather bizarre ways. I have no control over it at all. I can grab my toes, massage my feet but the minute I let go they once again return to their painful contractions. Often whilst I am attempting to force them out of their distortion I can feel the pain building up again which means another spasm is on its way.

There is no stopping it as the minute I let go my toes move without any conscious effort from me. On a bad night, it is almost always a night I get this, although when I have a very bad night during the day I can feel less powerful spasms on and off all day like I have today, nothing will stop the spasm. Massage will only provide a very short period of relief often just seconds. The only thing I can do is ride it out, apply heat and hope that it eventually goes away.

I have found it very difficult to capture images of my feet as the spasms can be very subtle. Unless you know what you are looking for it can be difficult to see why I am in so much pain. The spasms are always focused around my toes but the pain is felt throughout my feet. On occasion you can see the tension in the skin on my foot as my toes are trying to move in two separate directions. Almost always my big toe and the toe next to it want to go one way whilst everything else goes in a different direction. Spasms have been so strong in the past they have dislocated my big toe ( agony). I have raised this with doctors before who just look at me as if I am a sandwich short of a picnic. Where as now after checking it out on line there is a very real possible cause for what has been happening. I managed to take some photos this evening - my feet are swollen due to the amount of salt tablets I have to take and the toe nail on my big toe is a mess due to having the sides removed over ten years ago due to recurrent ingrowing toenails so my apologies. But without the photos you may not "get" it.

On this photo my big toe is pulling out and down, at the start of a spasm.

Just a few seconds later my big toe and the one next to it are twisting and pulling forward whilst the remaining three toes are curling toward the sole of my foot.

In this photo taken a few seconds on again you can see the big toe and the one next to it looks like I am flexing it forward and curling the other toes back. 

As I said it is hard to capture especially as it mainly only shows in my toes and make not look that strange to other people but the pain it produces is off the chart.

I managed to get this short video

The gasping noise is me due to the pain the movements are causing me. This was taken at around 9pm last night and it is now coming up to 2am and my feet are both throbbing still from the pain this 30 minute episode caused me. The pain and weird feeling I get afterwards extends all the way up to both knees. It is always my left foot that is affected the worst and whilst this was happening my right foot was joining in to a lesser extent.

I ended up having to take some pain relief and applying a heat pad to relax the muscles and to stop the contractions. Once an attack is underway I have to be very careful how I move my feet for several hours afterwards as it will trigger another round of spasms. Although to be honest it doesn't matter how I move if they want to spasm they will I have zero control over them.

I have noticed it gets worse if I am tired / stressed / unwell ( more than normal). I have been pushing myself too hard lately and need to drop down a gear, which will be hard for me to do as I feel guilty when I don't get all my jobs done.

People have suggested that it is low B12 levels that are to blame for these spasms but as I self inject on a regular basis due to my deficiency being under treated by the NHS, I really don't think that this is the cause. Plus I have some many neurological things going on that I really wouldn't be surprised if it is all part of some yet unexplained genetic syndrome that I have.

So for the moment I will just try to capture as many images as possible showing the distortions / muscle contractions so that when the situation with Covid-19 resolves or just things go back to a new normal I can show the doctors who treat me.

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.