Insomnia

**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 this but as I self inject on a regular basis due to my deficiency being under treated on the NHS I really don’t think that is the case. 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.

I am sure many of you are at the point where you just need a break from the C word ( Covid-19), some light relief as it were. The situation has everyone at breaking point, even those who don’t suffer from anxiety are starting to suffer with insomnia or anxiety. So this week I thought I would show you some of the upcycling projects hubby and I have been doing since he started his 12 weeks working from home. We are using these projects to keep busy and to stop the anxiety getting out of control.

The first project we tackled was his chest of drawers. We bought these from Facebook Market place around two years ago. They were a disgusting beige colour and had been upcycled quite poorly by the person selling them. The top of the chest of drawers hadn’t been waxed or varnished and nor had the handles. We decided to continue the blue theme of his room and do them in Vintro Paints Northern star. It is such a beautifully pigmented paint, the colour is just so deep. I really am in love with them. We decided to dark wax the top and the handles which really makes the blue of the unit PoP! Sadly I have no before photos.

Spurred on by the success of this chest of drawer unit, we decided to start on my bedside cabinets. I bought these from the Devon Air Ambulance shop around a year possibly two years ago with the intention of upcycling them. Life got in the way as usual and they stayed a horrid orange pine for longer than intended.

We decided to sand the top and stain it with the dark wax. We then used Vintro Paint in the no seal chalk paint range, the colour was Beau Blue, then it was sealed using Vintro’s Extreme Matt Lacquer.

We had two of these to do and I really can’t get over the difference, from orange and dated to a thing of beauty. I also took the opportunity to wax the runners of the drawers. The drawers have wooden runners that were a little stiff, I remembered years ago reading about how to ensure they run smoothly by running a candle over them. I had an old candle knocking about so gave both units a good run over and the drawers come out so smoothly now I am in danger of whipping them out of the unit completely!

The next thing we tackled was the huge pine book case from the lounge. For this one we used Frenchic Furniture Paint in Duckling from the Alfresco range and used the Frenchic Browning wax on the shelves. Whilst Jay did that, I did a small pine unit that sits behind the front door. On these items we decided to use a gloss paint foam mini roller to give the items a smoother finish. Although the paint is self levelling (both the Vintro and the Frenchic ) if applied too thickly you can end up with brush marks. By using a roller it eliminates these, you just have to be careful that you don’t get a build up of paint on the edges of the furniture. By using a brush you can remove these quite easily.

We had a break for a few days before starting the Tv unit. I wanted that unit done so that when I looked down that end of the lounge all that furniture was completed. I have hated this TV unit for so long I ca’t remember a time when I actually liked it! Now thanks to its transformation I love it again.

Then I did a little tiny project all by myself, a cheap Amazon pine table that was at least 5 years old. That was desperately needing some love. This one had the top sanded, then one coat of clear wax, followed by a coat of dark wax ( Frenchic ) followed by another coat of clear wax ( by Rustoleum ). I then painted it in Frenchic Furniture paint ( Lazy Range ) in Wolf Whistle. I have fallen in love with this colour!

All the furniture has been given a final coat of Vintro’s Extreme Matt Lacquer to ensure it can stand up to normal life in The Myasthenia Kid household.

We still have lots of furniture to paint / upcycle and these pieces have been done over the last 3 weeks, with lots of rest days in between. Neither of us can believe how good these pieces of furniture look now that they have had a bit of TLC. I had an inkling a lockdown maybe coming so bought all the paint in the weeks before so that should it happen we would have all our supplies here.

Just for clarification I have purchased all these products and none have been gifted to me. We really aren’t that lucky! There are lots of other brands of paint out there these are just the two I like to use for our projects.

Having the furniture to paint has helped give Mr Myasthenia Kid a much needed routine and hasn’t allowed for anxiety to kick in. We have had a wobble over the weekend where he talked about going back to work. I quickly convinced him that it wouldn’t be happening!

Dembe has been brilliant whilst we have been working out in the back garden. He just sits on his chair and goes to sleep.