Thursday, 25 February 2021

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. 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. 

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.

Thursday, 18 February 2021

Dystonia Again

 Around 10 months ago I wrote about Dystonia, I had been having terrible muscle spasms in my feet . You can find the original post here. 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 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.

Thursday, 11 February 2021

I am a work in progress

Today has got me in a reflective mood, 10 years ago today I met the man I will spend the rest of my life with. On Sunday we will have been a couple for 24 years, in September we will have been married 21 years.

I look back now and think how young we were when we met just 23 years old and just 26 when we married. Thinking about how much we have both grown personally and as a couple, I do occasionally think that 26 was far too young to settle down. I don't regret getting married at that age but if one of my younger friends said to me that they were going to tie the knot at that age I would be asking them if they were really sure! Despite all my reservations now, I have to admit we were engaged within a month of meeting. We both knew we had met the person we were going to marry.

Those of you who are long term readers of my blog or who know me outside the realm of cyber space will know that life has thrown its fair share of trials and tribulations at us, like it does at anyone and I am proud of the way we have pulled together. We have had people who have tried to insert themselves into our relationship, we have had people we thought were friends  attempt to split us up. 

No relationship is ever a fairy tale, there are always things that annoy you about your partner and things that annoy them about you. I do think the most important thing to remember is that you wont change your partner by being in a relationship with them. Far too many people enter into relationships and think they can mould their partner into their ideal partner. Then over time when their plan doesn't work, the quirks they thought they were going to get rid of through marriage or just being together, start to irritate them beyond belief and it can mark the beginning of the end for that relationship.

I have always been quite pragmatic about my relationship with Jay. After a series of heartbreaks as a teenager where I worked out that some of my behaviours could be seen as obsessive, needy etc I read lots of self help books. Not about "getting a man" but ones where I would identify and work on those aspects of my character that were still quite immature. I am quite proud of the fact that at the age of 19 I realised I would never be happy if I didn't feel more confident in myself. I'm not about the whole "if you don't love yourself no one else will love you bullshit". I am more about understanding why the previous relationships had failed and there was blame on both sides. I had been devastated beyond belief with two of them ending despite now looking back and realising what a lucky escape I had!

For the three years before I met Mr Myasthenia Kid I was single, not a nun I can assure you but I was single. I had learned to be secure and happy in my own company. Sure at times I was lonely, especially when I moved away from home and lived on my own in a town I didn't know with people who were strangers to me. I know at times when I closed my front door at night, I knew I wouldn't see another living soul until I was back at work the next day. This situation didn't change when Jay and I started dating as he lived an hour away from me, we saw each other on Sundays and days off. It was really good for me to have this situation as it meant that my whole world didn't revolve around him, I had to make friends and carve out a life for myself, which I did.

It was 18 months until we lived together and even then it still felt like we were in a long distance relationship as he was working twilight shifts in another town. So he would be leaving for work at 4pm and wouldn't get home until 2.30-3am. At the time and I really don't know how I did it, I would get up, have a cup of tea and a chat with him when he got home. Because otherwise we could go days without seeing each other properly. This period of around 3 years was really tough on our relationship, it was much harder than when we were in separate towns. Mr Myasthenia Kid was permanently knackered with working these shifts in a shitty location. He was too inexperienced to stand up for himself and as a consequence had to put up with some appalling employment conditions, with god awful managers.

In around 2001, we actually worked together in the same location ( and did until I was ill health retired in 2008 ). This was a good laugh, we still didn't see an awful lot of each other as we worked a lot of different shifts. It also wasn't always possible to have the same holiday as each other. The main problem I seemed to encounter was staff not understanding that we were separate employee's and disputes with either one of us, seemed to drag the other one into it no matter how hard we fought to remain independent from each other. When working in the same store we had even less time together really as usually we only had one day a week off together. We also liked the money that working Sunday overtime gave us. Due to this we would have 2 Sundays a month together and occasionally our day off in the week would coincide. 

I know some people think I am crazy when I say that ill health retirement does have it's bonuses. At the grand old age of 47 I have spent more time with my husband than many people get in a lifetime. I see him every morning, every evening and he pops home for lunch most days. I get every Sunday with him and every day off. Last year when he was shielding I had 7 weeks solid with him and yes we are both still alive! That was actually one of the longest periods of time we have ever spent together without one of us working. Our relationship has grown stronger and stronger since 2008. At the point when I was ill health retired in 2008, I really don't think it would have taken much for our relationship to have broken down irretrievably. There was nothing that either of us had done wrong, it was just the fact that we were spending so little time together and we were both taking each other for granted a little.

We have been incredibly fortunate that despite the stresses and strain that Chronic illness has thrown our way that instead of drifting apart we have become closer than ever. I know ( this feels so weird saying it) a lot of our friends think we are their relationship goal. They want to be as comfortable in their own skin as Jay and I are together. We have been lucky in the fact that not only did we fall in love but we became each others best friend. We can finish each others sentences, quite often we will suddenly start singing the same song at the same time. Quite often we will bring a subject up that the other has been mulling over but hasn't talked about with the other. At times it is incredibly spooky.

Now that all the soppy stuff is out the way, I will quite happily tell you that there are things that annoy the hell out of me about Mr Myasthenia Kid, I am sure there is stuff about me that grinds his gears. I have mentioned previously his awful habit of getting his blue hair gel in the bathroom basin, every morning and never seeing it, so I have to clear it up. Also he never puts his hair gel away once he has used it. Daily I have to put it back on his shelf in the bathroom. The fact that he is still smoking, despite telling me three years ago, when I gave up he would. I hate the smell of it. The fact I have to tell him to do stuff repeatedly and then he moans at me for nagging! Due to my misphonia, I can't abide the sound of him eating, I know that there is nothing wrong with it. I just can't stand the sound of anyone eating or nasal breathing sets my teeth on edge and make me really angry! So I am not a barrel of laughs to live with, coupled with my streak of perfectionism he has a lot to deal with!

But somehow we work. It feels effortless most of the time. Occasionally I have to step back and deal with things pragmatically, knowing that he was like this before I met him and if he hasn't changed in 24 years it ain't going to happen now. Since dealing with things realistically and sensibly instead of blowing up like I used to life is a lot less stressful. I no longer get angry at the small stuff that doesn't matter and I don't "punish" or "berate" him for being himself. I just decided "what's the point in that". I do believe with age comes wisdom, I hope I use that wisdom. I am not perfect by any means, I am a work in progress as we all are.


Thursday, 4 February 2021

No blog post

No blog post this week as Mr Myasthenia kid is on holiday from work and we are trying to get some jobs done around the house!