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 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.

Face masks

A few weeks ago I helped the local NHS hospital by altering some surgical masks for them that had come in but the elastic ear loops were too big. This led to a few of my friends asking if I would be making face masks or would I make them some face masks for them or their friends and family. I know the jury is out on the use of face masks. This post isn’t about that, there are research papers that are for and against the use of face masks by the general population. I think we can all agree that “home made” face masks when worn provide protection to other people more than the wearer – which is why many countries have adopted  the wearing of face masks so that they can all protect each other from Covid-19 and other nasties.

 
Initially I was very much in the camp of home made masks are bad. That they provided a false sense of security and that by having poor mask etiquette that they could cause more harm than good – if someone continually touches the front of the mask when wearing it and doesn’t wash their hands after they are capable of spreading their germs far and wide on every surface they touch. Since then there have been articles in The Guardian,  The New York Times that have shown even home made masks when constructed from the right materials can offer a level of protection that hadn’t been anticipated. Add in a filter to those masks – made of an unwoven material or a special mask filter ( you can buy at various oulets) they can provide as much protection as the surgical masks I was altering the other day. A link to the New York Times article can be found here.  The Daily Mail did an article –here The Guardians Article can be found here. So I am now very much of the opinion that yes we should all be wearing face masks of some description when out in public to help protect each other.
So for the last 20 days when physically able I have been making masks for friends and family to wear. All I have asked for is the cost of materials, being on a tight budget I can’t afford to be giving away material, elastic and pipe cleaners etc as much as I may wish too. With Mr Myasthenia kid at home, he has been able to keep Dembe entertained and do the chores I would normally push myself to do that would wipe out my energy reserves. Even with him doing that I have had a couple of days in that 3 week period where I have crashed hard just due to pushing myself too hard for too long in an effort to keep people supplied with masks and not letting anyone down. I am on an enforced break now as I have run out of elastic – I thought I had ordered enough but apparently not! I am awaiting fresh supplies. 
 
To be honest I am quite glad for the break, I am so tired mentally and physically it hasn’t been until I have stopped that I have realised how far past my reserves I have got. I always find it amazing how knackered I can be doing nothing ( but obviously I am not doing nothing as I am taking care of myself. I just judge myself way too harshly and think I should be as active as the next person even when in reality I know that is an impossibility ). There have been evenings when I have been so tired that I am unable to form a coherent sentence or stand up straight. The rest was long over due.
 
For my mask pattern I used this Youtube tutorial
 
 
Mr Myasthenia Kid has been helping me with cutting, pressing , folding pipe cleaners for the nose bands, going to the post office etc All the things that can take me more time than an able bodied person and things that I can’t do such as a post office run. Without his help and support I would never have been able to make the number of masks I have. 
 

 

 
 

 
I have been running on adrenaline for days, I knew I had. Last weekend I was supposed to be taking some time off for sewing but instead I started several other projects. Today (Tuesday  21st April ) is the first time I have sat and just done nothing. Everything is hurting and I feel zombie tired. Which is why I tend to keep pushing and pushing because I know how incapacitating the crash will be. I have always been a boom and bust merchant. Plus keeping busy stops me worrying about Covid-19 and what would happen if either of us got it. 
 
So due to my lack of elastic I have had to have a day off and it feels strange. I’m so tired though it was very clear that I needed it. I did manage to get Jay to help me highlight my hair as I am having real problems lifting my arms above my head. Within seconds of doing it I am getting awful pain in my shoulder joints. Normally I would battle on through but it is just too sore for that and I am having to put my arms down. He has done a good job and now my roots look far less obvious than they did previously.
 

 
I did have a lovely surprise this morning finding out that Natasha McCarty from Natasha Makes was sending me a gift after hearing about my run in with a pin cushion on Saturday!
 
 
 
On Saturday when I was busy making a baby bib for a friends new baby, I didn’t notice that I had knocked my pin cushion onto the floor. It had gone pin head side down leaving the sharp ends pointing up but hidden by the pin cushion. I use this particular pin cushion as it has sentimental value to me. It was my late paternal grandmothers and I use a lot of her old sewing stuff on a daily basis. It was only when I got up from my sewing machine and I removed my foot from the pedal, that I placed my foot on top of the pin cushion ( I was wearing socks only) and put all my weight through that foot to stand up. To say the air was blue would be an understatement! It took me ages to get all the pins out of my foot as there were around 20 or so on the cushion. I yelped and cried, there was blood and tears. Later when I looked at my sock I realised that the blood had come right through . 3 days on and the sole of my foot is still a little sore, not something I ever want to repeat, especially as a long time ago I stood on a darning needle and had to go to the local minor injuries unit to get it removed whilst using gas and air! I will be making the pin cushion as soon as it arrives and I can’t thank Natasha enough for that. 
 

 

 

 
 
Dembe modelling my creations from last weekend!
 
So for now I am putting my feet up and allowing myself to chill out for a few days!

Some light relief

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.

Websites for the paint

https://frenchicpaint.co.uk/

https://www.vintro.co.uk/

Exhausted

I know I am not the only one who is suffering through lack of sleep at the moment. My news feed is full of people all saying the same thing, wide awake and can’t settle down to sleep or wide awake at 3am with heart racing mid panic attack. This virus is doing a number on all of us, mentally and physically. Add in a dog that is refusing to accept the clocks have changed and is waking you up at 5am most mornings and you have me exhausted.com. 

On top of not sleeping it has also been a busy few days for me as I started making masks due to friends and family asking me if I would. Initially I was reluctant as there seemed to be very clear advice coming from the medical profession and the government in the UK saying that they weren’t effective. However over the last few days a few studies have been published looking at the effectiveness of home made masks and they have said that yes they do work. They do need to be made from quilters cotton and a double layer of fabric. The ones I have been making also have a pocket in the back so you can add in a filter – either a proper mask filter or any unwoven material will do.

 

It has been a non stop mask making factory here for a few days and I have pushed it beyond what was sensible so I have landed with a bump today. Utterly exhausted, short tempered  and feeling very fed up.  I also feel like I haven’t accomplished anything which is utterly ridiculous as I have supplied friends and family with washable, re-usuable masks in an attempt to keep them safe . So why is my brain making me feel so bad??? It makes no sense I should be walking on air. Especially since I have had such lovely feed back from those that have received their masks. I think it is  a mixture of anxiety and sleep deprivation.

After finishing the masks this morning I have just hit a wall of fatigue. It is frustrating as I want to do stuff but the mental and physical fatigue means if I do try to do anything I will make a complete hash of it so it is better to just rest for the remainder of the day and not feel the urge to complete / do stuff to feel worthy. The masks were enough and the last one today was an endurance challenge just because I was so tired and it was beginning to affect my vision.

 

I did wake up this morning feeling really down in the dumps which is unusual for me. I think it is a mixture of a lot of things, Covid-19 and the anxiety it induces, the fact that our first holiday since 2006 has been cancelled, not sleeping, my routine of 12 years up in the air due to hubby being home, no time to myself, not being able to see people ( not that I saw them a lot ) just so many different things. We are incredibly lucky and I do know that. We haven’t got to worry about money, Jay has a job and is being paid. So many people don’t have that currently. Our mortgage will be paid along with our bills. So many of my friends are struggling having been made redundant or losing customers as they are self employed. I know that we are very fortunate but like a lot of people I am finding this new normal very weird and taking some time to adjust too.

I’m writing this to let you know that if you are feeling any of these things it is totally normal. It is a totally bizarre thing that we are going through all over the world at the moment. It is natural for us to feel out of sorts, unable to sleep etc at times of stress. 

I know it isn’t a massive post this week but I am dead on my feet, there is nothing left in the tanks. If I knew it wouldn’t interfere with me sleeping tonight, I would be in bed already!

Crazy times!

This is my mini quilt that I rushed to put together on Sunday morning. Here in the UK we are placing rainbows in the window, so that as people walk past on the daily exercise out of the house if they aren’t shielding, it makes them smile. I love it when people are walking past stop and look at it – hopefully they aren’t looking at it saying it is crap but looking at it and smiling!

I hope….

Well it seems we are all players in some kind of dystopian society. The police ( it has been reported) going into shops and telling the store owners what they can and can’t sell. Road blocks stopping cars asking where the occupants are going. Whilst I understand some of these measures maybe necessary I do sometimes wonder if there will be long term ramifications for our civil liberties when this is all over. Possibly the free society that we have been told exists for so long, was just a fallacy. Who knows ? It is just a bloody strange time to be alive. 

I worry a lot about the adults of the future and their mental health after being exposed to these constant stress levels. No matter how good of a parent you are the kids are going to notice that things are far from normal. Exposure to high levels of the stress hormone cortisol for prolonged periods during childhood is theorised to cause damage (here) We went into this global pandemic with a vastly underfunded National Health Service, whose mental health side always played the poor relation. Now we have the very real issue that after we get through this that not only adults maybe displaying the symptoms of Post Traumatic Stress but also millions of children. All people who may be needing immediate help after this crisis is over but the help sadly won’t be available to them.

My anxiety levels have been all over the place in the last week, I know I am not the only one who is struggling to deal with the current situation. Last week gin and chocolate were my drugs of choice but they left me feeling awful and rapidly gaining weight, so I have switched back to my meal replacement as I feel so much better on this and it stops the passing out after eating nonsense. Hubby is also having to battle the demon anxiety, his is related to work and the guilt of not being there. The slightest thing is setting him off so it is necessary to attempt to fill his days with as much activity as possible so he simply doesn’t have the opportunity to fall down the Covid- 19 Rabbit hole. 

I was perfectly fine with the whole lock down situation as in all honesty it was no different to any other week in the past 12 years. At the moment with Mr Myasthenia Kid being home it just feels like he is on holiday other than his work phone is on and he is ringing staff to find out how they are doing whilst they are also on 12 weeks leave from work. However more than two weeks of this and it is going to get bizarre. I have grown very used to my own company over the last 12 years. I can usually accommodate the disruption to my routine when he is home, this 12 week period could be a test as I do like my routine. 

On Saturday a dear friend dropped off mine and hubby’s prescription medication to us. Normally I would have thrown my arms around her and given her a hug. Instead we had to observe the whole two metre distance protocol . It was weird and unnatural ( I get that it is to stop infection, it doesn’t stop it from being totally alien ). We have over the last ten years become quite a demonstrative country, friends greet each other with a hug, peck on the cheek. So to suddenly go back to not greeting my nearest and dearest this way, well it really upset me. As soon as I closed the front door I started crying and I pretty much wept on and off all day long. Which was a bit of a nightmare as I was trying to do some sewing. It was the first time in a long time that I had to acknowledge the isolation. I know I am incredibly lucky, I have someone at home with me, so I have human contact. There will be many people out there, particularly elderly people or those who have been widowed with grown up families that have no one at all and it will be like that for 12 weeks ( at least ).  Countless pieces of research have concluded that loneliness is as bad for you physically as smoking 15 cigarettes a day let alone the damage it does to you mentally. For a nice easy to read article on it click here .

A lot of people are going to be experiencing something they have never done before – complete isolation. The impact on the health service after this is all over will last years and people, well those in power need to be thinking about the nations recovery, not just financial after this. Every generation will be affected, every demographic it is another ticking time bomb waiting for us on the other side of this pandemic. There will be those dealing with the loss of one or more loved ones, those who have had OCD triggered ( obsessive compulsive disorder ) by the excessive hand washing we are all undertaking to prevent contracting or spreading this virus. Also what about the women who are due to give birth right now, will there be an increase in postpartum depression or psychosis? We already knew that the mental health resources were spread thin before this started, with a depleted exhausted work force how on earth will anybody get the help they will so desperately need when this is finally all over ( and for some their conditions will be so acute right now that they need the care immediately and it won’t be there ).

I also worry for the key workers who are holding this country together right now. Ever increasing work loads as more and more people have to self isolate for two weeks. The abuse that some of them have suffered whilst simply trying to carry out their role to help the general public. Some of them have had to make some very painful emotional choices, not to see their children / loved ones for fear of contaminating them with this virus. When they are already experiencing probably some of the toughest working conditions they have ever endured they now have the added emotional toll of having the physical contact of the ones they love removed from them. The people at home can be the very support system that keeps people going at times like these.

I have great concerns for the doctors, nurses, health care assistants, home carers who may have patients that pass away from Covid-19. I can’t imagine the toll that is being taken on those who are dealing with rooms full of Covid-19 sufferers, that will or probably have already decided who will and who won’t be placed on a ventilator. Can you even begin to imagine the damage that must do to a person? Having to tell that persons loved ones that the patient won’t survive, isn’t a suitable candidate for life support. People may think they must become immune to it over time but I don’t think they ever truly do and this maybe the tipping point for many in this field of medicine that leads them to walk away from it once this crisis is over. It maybe the same for many occupations, that people realise the emotional toll that the job has taken on them is just too high.

Many of my friends still work in retail, once a job considered by many to be low skilled is now feeding the nation. However after 2 weeks worth of abuse by the general public many are now refusing to do more than their base hours, no longer willing to do over time and be exposed to the abuse both physical and verbal for just over the minimum wage. Who can blame them? Many people are making the decision to place health particularly mental health over wealth. They can no longer put up with their treatment at the hands of others, when they are providing a vital service. Without anyone in food retail from the checkout operator, to the store cleaner, to the HGV driver to the factory worker, to the packet printer, to the farmer and many others I have failed to mention, you would’ve have gone hungry. And yet some people are still treating them like they are shit on their shoes well shame on you.

I am hopeful for great social change once this is all over. I am hoping those previously thought of as low skilled get the recognition they should by being paid a proper wage. That the homeless will remain housed and not turfed out once the crisis is resolved.

I hope that we come out of this accepting that we all will be carrying mental scars no matter how tough we are and that there will be the help available to all that need it, not just those that ask for it.

I hope that we all start to appreciate each other more and realise everyone has their part to play if we want to live in a fair and just society. That it is no longer someone else’s problem.

I hope most sincerely that we never go back to once what was normal, that we strive to make a difference every day.