A strange week

Well the last week has been a strange one, it started on Friday morning when hubby and I both got a text message from our doctors surgery telling us we were being invited for the Covid vaccine. I had only done the vaccine calculator a few days prior and it had been saying that Mr Myasthenia Kid due to his medication for Psoriasis and being a carer would be in group 6 and I was unlikely to be vaccinated before the end of May into June. So I was pleasantly surprised that we both got the invite. We are both booked in at different times as one of us needs to be with Dembe, as he is never left spoilt pooch that he is. Mr Myasthenia Kid is getting his at 9am and I am getting mine at midday.

I am a bit worried about getting the vaccine as a few of my friends in the chronically sick community have been poorly after. Some of them had been unlucky enough to get Covid and are struggling with long Covid. Others had Covid and had very few symptoms and are reacting very strongly. My own dad was vaccinated a few weeks ago and he still has a sore arm at the injection site. My mum was vaccinated at the beginning of this week, as far as I know she is doing ok. I am happy to be getting the vaccination, I know there are many differing opinions. To be honest if Mr Myasthenia Kid didn’t work in retail I don’t know if I would be quite so keen to get it. My risk has always been that he brings it home to me and I get exposed to it that way. As we are both over weight ( but not morbidly obese or a BMI over 40 ) we are at a slightly higher risk of complications should we get it. What worries me more about Covid is the possibility of Long Covid and having terrible complications that impact me or hubby for the rest of our lives. Life is hard enough with my health, it would be even harder with Mr Myasthenia Kid also sick and he would struggle mentally if he had to lead the life I do. I see the arguments raging on social media every day for and against the vaccine, everyone is entitled to their own opinion but screaming at each other doesn’t change minds.


I just had a very sobering experience and it has left me feeling sad. I went to our post box ( a hangover from when we had the Weims who ate post, including a cheque for £500 once!) and as I did, I happened to glance up the road. All piled up in front of the house where both my neighbours have recently passed away, are all their belongings in black bags. Their relatives must have people in doing a house clearance. I will be honest we hated each other. But to see the sum total of their lives packed up in black bags ready to be taken to the tip really upset me. They were loved by their friends and family but the things they cherished lie out in the street in rubbish bags. It really hit me hard, probably my age and having to accept my mortality. It just seems so tragic that their lives can be summed up by the contents of those rubbish sacks. It is the first time I have seen something like this. I know many people have to clear houses after relatives pass away, it is the first time I have seen it. I didn’t like it.


Sorry this post is a bit of a mish mash but that’s how my week has been. Yesterday I had to go and get some bloods done to check my electrolyte levels and to have the first of what I am assuming will be regular CA125 blood tests. For those who don’t know what a CA125 test is, it is a test used for diagnosing Ovarian Cancer – well one of them, You can find more information here  https://www.nhs.uk/conditions/ovarian-cancer/diagnosis/  I am having this test because my mum had a rare type of ovarian cancer back in 2018. Thankfully she is in remission and doing well after a huge operation to get rid of the huge ovarian cyst she had which contained a minute bit of cancer. She was incredibly lucky it was found when it was, it was mainly found due to the size of the enormous cyst on her ovary which was the size of a rugby ball. Although the type of cancer she had was rare and not one that runs in families, my gp and I both think that it is a good idea to monitor what this marker is doing. Although in my mums case her CA125 was barely raised, when her cancer was removed. She now has to have this blood test very regularly as she is still being monitored by the hospital. She is in remission and won’t be classed as cancer free for at least another 2 years. I was absolutely fine yesterday having the test but for some reason today I have started panicking about the result. It is a bit silly really, I need to have the test, I pushed for it and now I am terrified. Life eh?

Yesterdays blood draw was a bit of a disaster. Having my bloods done is never a pleasant experience unless I have a highly seasoned HCA / Phlebotomist / Nurse taking them. Otherwise I end up with a frustrated medical professional and multiple stab wounds. I sort of knew I was in trouble when I had to ask for paediatric needles and explain that me having Ehlers Danlos Syndrome meant taking my blood would be like sticking a needle into an elastic band. I have small veins that will blow at the slightest provocation. Yesterday for some reason I was in one of those moods where I didn’t want to make a fuss. I should of as I have been fucking butchered. 

When she went for the crook of my arm, a place that hasn’t given up a drop of blood in years I should have spoken up. I didn’t. I was put off  saying something as  I could sense that this person wasn’t going to accept anything I said as gospel. I have had a few of these appointments of late, the last one with a hospital consultant that told me I didn’t have a spontaneous CSF leak in 2016 because my MRI didn’t show any signs of it. When you are met with that kind of ignorance there is no point fighting it. I must get a load of my CSF leak info leaflets together and put them in my handbag so the next time I am met with this shit I can casually leave one with them to read and educate themselves.

I digress, so she starts on the crook of my arm. I know this isn’t going to end well. Of course because I am half asleep due to my appointment being at the crack of dawn I forget to read her the riot act of absolutely under no circumstances is she to dig around. I get woken up with an electric shock like pain as she strokes the needle over a nerve. I want to say FFS but I dont, I take a huge breath in. She then says helpfully *sarcasm* you are very sensitive aren’t you. I wish we didn’t have Covid as my husbund would be here telling her she was talking out of her behind. He says at every opportunity that I am as hard as nails for everything except dentistry. I have had a lumbar puncture when the aneasthetic worse off, I have had the sides of my toe nail removed without aneasthetic as the ring block has worn off. I am not a dainty little peach that bruises at the slightest contact. I am in pain because your technique is shit. It probably works on big juicy normal veins but my veins are c*nts and I tried to tell you! 

It does what my veins always do, fills the tube up, looks promising a few drops go into the vial and then its stops. She digs around, I try not to react as she already has me down as being a pansy. When she gives up, I almost have tears in my eyes with relief.

This is how it is looking today. The bruising is inside and moving my elbow is sore. 

I then suggest the back of my hand as there is a place between the first two knuckles on my right hand which is always a sweet spot. This is ignored and we move to the side of the back of my hand. The tourniquet is so tight I am pretty sure that I am going to be bruised from its application. Without a word of a lie two hours after the blood draw, I still had the marks of where the tourniquet had been tied on every area of my arms.

This next spot is the same and is worse in the fact that I know the vein is blown before she seems to. I have to say now hand on heart this is the most painful blood draw I have had in all my 40+ years and I have had a boat load. 

As you can see I am the proud owner of a multicoloured wrist, that feels like it has a marble under the skin from the blown vein.  Also I would like to point out none of these photos have had any filters added, my bruises actually look worse in the flesh!

I just want to point out even though I have EDS, I RARELY bruise like this from a blood draw. I only bruise like this when someone has taken no notice of what I have told them and thinks that my veins need no special treatment.

This one was very painful as whilst the vein was blown she was again stroking the needle along my nerve endings and was surprised when I kept jumping.

Our doctors surgery has a policy of three attempts and then you get re booked for a blood draw with someone else. She did ask me if I wanted to continue. After having to get up at 6am so I could make it to the appointment semi- conscious, there was no way we were trying every single vein in my body to get blood!  So we went for vein number three on the back of my left hand.

This one did give up the goods at the rate of a slow trickle, she did insist on continually moving the needle about which I hate because I find it so painful. I must’ve turned a bit white on this one as she kept asking me if I was ok. I was fine just in pain and when I am in pain I go quiet and very white. This one blew as well, so I had the joys of her continuing to attempt to get the blood out whilst I could see the surrounding tissue turning a nice livid blue. The only good thing about this appointment was that I got the name of the nurse who can get my bloods on the first attempt. I have saved it on my phone so that all future blood drawers will be booked in with her. 

This one is bruised but it isn’t anywhere as bad as the other two, as I am so pale the camera doesn’t capture the colours as well.

I was so tired after this appointment that I went to bed in the afternoon and slept for two hours. Something I very rarely do as it usually stops me from sleeping later that night. I was completely worn out by the stress and pain of it all.

I am keeping everything crossed that I don’t have to have them repeated any time soon.


Around 10 months ago I wrote about Dystonia, I had been having terrible muscle spasms in my feet . You can find the original post  https://wp.me/s4zBAs-dystonia . I said at the time I was waiting for the Covid situation to die down before I would speak to my doctor about it. I have had so much contact with my doctors surgery over the last 12 months it is getting embarrassing. I have had so many health issues that have all needed in put that when my feet really badly flared up for days on end, leaving me unable to walk until the spasms stopped. I knew that I could no longer ignore the issue. When your toes are curling under and making it impossible to walk it has got to the point where you can no longer ignore the situation.

Until last week my feet were intermittently causing me issues. I knew they would be bad if I had been on my feet for too long or had got over tired or stressed. I would probably have at least one to two episodes a week. Some were quite spectacular so I videoed my toes going in and out of spasm. I had a few comments on the video’s from people who suffer focal dystonia who agreed that the movements of my toes were exactly the same as theirs. Which was comforting, as when I have posted about my feet elsewhere, I have been told to take more vitamin B12 to stop the spasms despite the fact I do self inject vitamin B12 on a regular basis as the NHS doesn’t allow me to have injections on a regular enough basis, around every 2 to 4 weeks depending on my level of stress / antibiotic load / alcohol consumed. So for me B12 deficiency isn’t an issue it is something I am on top of ( I think ). I certainly no longer have the issues I was having when I was deficient which was numb hands and feet, with burning pain in my left leg. I would love for the issue to be B12, when it was first suggested that it was a sign of B12 deficiency last year I upped my B12 injections to every other day for 2 weeks and then went to once a week. It made no difference to my feet. 

The issue with my feet has increased now to the bottom of my feet when not in spasm are very sore, they ache deep inside the muscles of my feet. It is a pain that nothing relieves. This is usually the pain I will get before I get a spasm. So it is very strange that I am now getting that pain on a regular basis with or without a spasm.

So at the end of last week, when things got really bad with my feet, it always seems to be the left one that is the worst, I took some photographs and then filled out an econsult form.

Two of the photos were taken last week and the bottom one was taken in May last year. It can be either foot that spasms but it tends to be my left foot that is the worst. I am always worried with the photos that you can’t see that anything is wrong with my feet.

On Tuesday the doctor from the practice rang me, I had seen him recently with regards to my neck and he was ok. He went through what triggers the spasms, which can be something as stupid as my foot catching the duvet cover whilst I am in bed, to just being sat down and the spasm will sat. There isn’t any rhyme or reason but I do know that being over tired or stressed will cause more spasms to happen and for them to be stronger and more painful. If I am wearing shoes when the spasms happen I have to get my shoes off to try and relieve the pressure but it doesn’t always help and sometimes my feet are in such a weird position I can’t get my shoes off. 

The doctor went through my long list of medications and tried to tell me that pyridostigmine / mestinon can cause muscle spasms. As I have been on and off this medication since 2007 I was able to point out that the life of this medication was 4 hours in the body and that my taking a tablet and when the spasms happen rarely coincides. He wanted to know what would happen if I didn’t take them so I explained I would faint a lot more, I would lose the sight out of my right eye and the right side of my face would drop like I have had a stroke. Needless to say he was a little surprised that this one pill would have such a huge impact on my life.
We have come up with a plan that as I haven’t had any bloods taken for over 18 months that he wants them done, as neurology will ask for them to be done if they aren’t. He wants to see if it is something like an electrolyte imbalance that is causing the muscle spasms. If they find something in the blood work then he maybe able to do something to correct it. After the bloods are done and if they don’t show anything he will refer me to neurology however he will also ask them to suggest medication to help in the meantime. This is all good to me as with Covid impacting every aspect of the health service I will take anything that they are willing to do. 

Obviously at the back of my mind there are concerns, dystonia can be a symptom of other issues rather than just dystonia. I think it is pure and simple dystonia and keep telling myself that. I have had so many tests for other issues over the the years that I just refuse to freak out at the possibility and what ifs. I can’t live like that, I refuse to live like that.

So when I know anymore, you will know more.

A photo of my gorgeous boy to end on a happy note.