Self care

 Firstly I am doing a lot better than I was doing last week. I got some diazepam from my doctor which stopped the spasms and allowed me to just reset everything so that I wasn't in constant pain with the occipital neuralgia.

I have had a few more bouts of bowel adhesion pain, I have no idea what is triggering it other than possibly stress. As usual there are things going on that I can't blog about as they are deeply personal and private. The stress is also contributing to a few visits of insomnia. Today my tired is tired! 

So I have reluctantly decided that I need to have a break and step away from the blog for a couple of weeks. Coming up with a post every week is adding more pressure to me and life is already hard enough at the moment. I would have been having a break next week anyway as it is mine and Mr Myasthenia Kids birthday. When I will be back? Sadly I can't say at the moment. I don't envision it to be any more than a few weeks at most. 

Sometimes I just need to catch my breath and take the pressure off myself. Mr Myasthenia Kid, Dembe and me are all ok, so please no one panic about us. There are things going on outside of us which is not for me to discuss and for it to be out there in the world. At some point I will be able to say just not right now.

For now self care takes priority.

Dembe

I don't write about Dembe all that often on this blog, mainly because he has his own blog. However this last week has been a roller coaster of emotions. I always try to share as much as possible with my readers ( and thank you for reading!) whilst holding back a little so I have some privacy. Dembe is a huge part of my life and is my baby boy. So you can imagine the emotional turmoil I was in when he had to go to the vets all day. It has had a knock on impact with my health, leaving me exhausted, several migraines and generally feeling well below my usual level of shittiness.

 On Wednesday last week ( 29th September ) Dembe had to go to the vets for the day to have some X-rays taken of his front legs. Dembe has had an intermittent limp for a few months this year and conservative measures of rest and pain relief were just not working. He was also showing signs of being stiff when he got up after being laid down for a while. All things we should not be seeing in a dog that isn't even three yet.

Dembe had to have both legs x-rayed, 3 different positions for each one and to do this he would need to have a general anaesthetic. We really didn't want him to have to under go a G.A but we had done all we could and we needed to know what was going on with him and that he wasn't in pain.

Mr Myasthenia Kid dropped him off at the vets at 08.30am and so began the longest day of our lives. We were told that we should hear something by 2pm and that if we hadn't we should give them a ring. Jay caved at 13.50 as he needed to know Dembe was ok. We found out that he was fine and that he had been out for a little walk and  had been to the toilet. We were told the vet should ring us back in an hours or so.

The vet rang back around 90 minutes later and if it was actually possible those 90 minutes seemed longer than the whole of the rest of the day. Sadly she told us that Dembe has bilateral ( both legs ) Elbow Dysplasia, - you can find out more about ED here. The vet told us that his left leg is more badly affected than his right. However both legs are only showing very subtle changes on the x-rays. The  x-rays will be sent to an orthopaedic specialist who will provide us with their expert opinion.  The good news was that there were no bone fragments floating around the joint, so he wouldn't need any immediate surgery. As the condition was discovered early treatment will be conservative management, getting his weight down, physiotherapy and hydrotherapy. He will adore hydrotherapy as he is a water baby, as any self respecting Labrador is!

I have never been so glad to see my baby boy in all my life. He really wasn't with it when I saw him walking down the car park. Everyone kept telling us what a lovely boy he is and they thought it was so sweet that he had come down with his blue dinosaur. The vet nurse talked us through after care and said he would probably be out of sorts for 24-48 hours. She also told us that there was a risk of him having diarrhoea as that was a side effect of one of the medications he had been given. They had also given Dembe's nails a trim. She said that he doesn't like his legs or feet being touched, I said no doing his nails is a two person job! 

When we got home I said to Jay do you think he wants to go around the block but Dembe made it clear that he didn't want to by going straight into the house and jumping on the sofa with his carrot.

 

Our little space cadet was really out of it.

Dembe had a really awful time after the general anaesthetic. He cried solidly for 24-36 hours, only stopping when he slept, briefly! Or when he was eating or out for a walk. He had awful diarrhoea as a side effect of the medication he had been given. As he won't go to the toilet in the garden this meant Dembe had to be taken around the block frequently. Poor Jay was out at 9pm, 10.30pm, 1.30am, 2.30am and 5am on top of the frequent trips around the block during the day.

The crying went on through most of Thursday, just a little whimper constantly. It was clear looking at him that he still wasn't fully out of the G.A. His eyes were like saucers. I was very relieved when his natural treat box arrived and he was very interested in it. The chewing broke up the crying.

 He had a huge hairy cows ear to chomp on and that cheered him up.

He was so sad and pitiful it was heartbreaking that we couldn't comfort him. The first time he was really happy and started looking more like himself was when he had a present delivered from his Auntie Beverley. She had sent our beautiful boy a Turtle toy. He wagged his tail like mad and was so happy he paraded it around the bedroom!

That was the first time we saw a glimmer of the Dembe we know and love since he had come home from the vets.

 

He was still having diarrhoea on Thursday during the day so I had to ring the vets and get him some stuff to soothe his belly. The vets advised us that it might take 24-48 hours to resolve.

Dembe was a lot better Friday still a bit whingey but we had longer spells between cries and he spent an awful lot of time sleeping.

As you can see from the photos his eyes are totally different and he is fully present.

By Saturday he was completely back to normal!

Yesterday (5th October) our vet rang us to give us the details of the report the Ortho Specialist had written. The specialist concurred with our vet, that Dembe does have bilateral Elbow Dysplasia. We were given 3 options 1) CT scan to provide  more detailed images and then from what they show form a plan, this would involve another general anaesthetic, 2) Open up both elbow joints - arthroscopy have a look inside with a camera and see what is going on, obviously this involves another general anaesthetic, 3) manage conservatively with hydrotherapy & Physiotherapy using pain relief when needed. Mr Myasthenia Kid and I had already discussed this at length before we saw how Dembe recovered from anaesthesia and had decided on avoiding surgery if both vets concurred that the joint is showing subtle changes, which they did.

The vet talked me through the things that we can do at home, so any slippery floors need to be covered up as much as possible with rugs. Well all our downstairs rooms are laminate flooring, I had already ordered some runners to cover large sections of the floor to stop him slipping. Upstairs the bathroom and Mr Myasthenia Kids bedroom are also laminate flooring, so I will need to get a small rug for the doorway in Jays room. The bathroom already has bath mats down. So we were ahead of the vet with actions we could take, as we were with the next few suggestions.

The vet told us to start him on joint supplements, we started him on Golden Paste last week. I made up a batch for him and he is really enjoying it. I have also got coming some green lipped muscle extract and some salmon oil. Both highly rated as supplements for dogs with joint problems. I just hope I can get him to take them! He is such a fussy animal.

We also need to get his weight down to the skinnier side of normal as this will put less strain on his legs. So we are actively trying to get his weight down, going on how he looks rather than weighing him at the vets.

Exercise, he can no longer have professional dog walks. He can no longer walk for longer than 25 minutes at a time, during that time he can't chase after a ball or play with other dogs both activities he loves because we can't risk a fracture of the elbow or making his joints worse. I am so sad for him, I can't lie I hid in the bathroom last night for a bit and just cried and cried.

Dembe has been referred for Hydrotherapy so we are awaiting the physiotherapist to get in contact with us. This will be used to strengthen the muscles around his joints and protect them in the long term.

So last week was very full on with all the stress surrounding Dembe and what they would find in the X-rays. Dembe has been very clingy since he was in the vets for the day. But he is walking much better and is no longer as stiff as he was getting up from a lying position, that makes us happier with the decision we have made regarding conservative management.

The last Bank Holiday of Summer 2021

 The last bank holiday of summer has been and gone, (celebrated in England, Wales and Northern Ireland), for many it signals the end of Summer and the start of Autumn. I can't believe it is September already, the weather is certainly letting us know it is by being markedly cooler. In some ways this year has whizzed by and in others it has crawled. It has been a strange year here at the Myasthenia Kid house, full of sadness and wishing that things could be different. It has been 8 months of constant change and things don't look very settled for the future either. Some days it feels like you are in the eye of the storm and others that you are on the outside edge of it looking in. All I can do is be there for those that need me and hope that it is enough.

The one bit of good news is that my headaches / migraines have eased up ever so slightly over the last week ( runs around furiously touching wood). Dare I say it I have had a couple of headache free days. Which is a miracle after the last 4-6 weeks. I did end up with a bad head last Sunday evening, mainly due to the fact I was out in the sun all day with no hat on ( my own fault I forgot to bring it with me) and I was probably a bit dehydrated as I just didn't drink enough during 5 hours that we were out. It meant I ended up going to bed very early and the following day I had issues with my blood pressure being very low. As soon as I had drunk enough I started to feel much better.

I ended up increasing the amitriptyline I take for nerve pain last week and that seems to have helped knock the headaches back a bit. I can still wake up with a sore neck and head but with a hot water bottle applied for an hour or so it does ease up considerably. I always try not to take medication unless it is absolutely necessary, which probably sounds ridiculous with the amount of medications I have on repeat prescription. I am always concerned that the Sumatriptan will stop working so I always try to head off a migraine before it is needed. Sunday night I ended up taking it along with 3 soluble aspirin and paracetamol as per the protocol I am supposed to follow. When I have a particularly vicious migraine this always helps massively. I have now started using the 3 soluble aspirin and paracetamol when I have a bad head that is not quite a migraine, that's usually enough to clear it. I am hoping now that I have got on top of the headaches / migraines now I can slowly put an end to this debilitating flare up that came out of nowhere.

As I said earlier we all went out together as a family on Sunday, me, Mr Myasthenia Kid and Dembe. I do love it when we can escape our four walls every now and again. People don't realise how small your world can become when you are pretty much housebound. A change in scenery always does my soul good, we travelled down to see Mr Myasthenia Kid's mum and catch up with some family who were also dropping by. I saw one of my nephews who I hadn't seen in such a long time over ten years. He is so tall now and what a good looking chap he has turned out to be. He was busy organising the cutting of Nanny's lawn with the petrol Lawn mower by another of my nephews. Jay and his brother and my niece were cutting the front hedge. Whilst me and my sister in law tackled some brambles with secateurs and supervised the dogs. We got torn to shreds as we didn't have any gloves. I didn't even realise I was bleeding until I noticed the handle of my secateurs were wet. I ended up covered in plasters. It amazed me how much everything had grown in the few months since the last time I visited at the end of May.

It is a really lovely garden and Dembe loves running around in it. Quite often we will catch him doing Labrador zoomies by himself out there. The garden is a little sun trap and gets the sun all day long, so I am gutted I forgot my bloody hat! I have never really done any gardening before, I have popped a few plants in a pot and weeded from time to time but I have never done any real cutting stuff back or pruning out the dead wood from shrubs. I actually found it rather therapeutic and it is handy that quite a bit of it can be done sat down. I did pay for it on Monday and Tuesday but like most people who are chronically sick you don't mind having a few rough days if you have actually done something to warrant it. It is when your health takes a nose dive and there is nothing you have done to trigger it that you get angry / frustrated.

Thanks to the bank holiday I will be completely thrown out for the rest of the week. I wont know if I am coming or going or what day of the week it is. I see Mr Myasthenia Kid has started getting the bins ready for Thursdays collection ( I am writing this on Wednesday) I will have to break it to him gently that due to the bank holiday Monday the bins wont be collected until Friday. Plus with Mr Myasthenia Kid not working a late today like he normally would that will really make my head spin and I will not have a clue what his shift pattern is until I am in front of a calendar.

The next bank holidays in the UK won't be until Christmas (I do believe we need more between September and March) as Mr Myasthenia Kid has a generous annual leave provision he has another two weeks of holiday booked between now and the second week of November. His first week is at the end of September around our 21st Wedding anniversary, I am struggling to comprehend that we are 4 years away from our Silver Wedding Anniversary ( 25 years ). He has another week booked off for our birthday at the start of November. So it isn't too long at all until I will have some company for a week during the day. With Covid and lock downs it has been more isolating than usual, which is why I enjoy visiting Nanny Morris and catching up with Jay's family so much.

I'm back

 I'm back after my two week sabbatical! I am so glad that I did take that time off as, things never ever go smoothly in the Myasthenia Kid household and this "holiday" was no different.

The first two days of our holiday had been written off due to the fact we were having a new boiler installed and two radiators replaced. Everything was going swimmingly until the Tuesday morning when the plumber managed to go through the stud wall when hanging the bathroom radiator. It isn't the first time this has happened, when installing a toilet roll holder for me, my next door neighbour went straight through the stud wall. Yes our house is that poorly constructed and the shock of it is that this is apparently worth £224,000-£234,000 in today's market. How on earth is anyone supposed to get on the housing ladder these days? Anyway I digress. The contractors were  fantastic, the plumber was straight onto his boss and by the evening I had been emailed with a very sincere apology and dates / times of when people would be around to sort out the damaged wall. This was all great but meant a further 3 extra early mornings for us as the boiler installation went over into another day, and three visits from the company's decorators to fix the damage, sand the wall and then repaint.

*** for those of a delicate disposition skip the next paragraph!**

Hilariously on the second day of the boiler installation I came down with a stomach bug and not the throwing up kind. As I was sat on the sofa in the lounge I could start to hear every part of my intestines sloshing around and lots of gas also building up. Due to the stud walls in our house and it being a two up two down I didn't wish to share my experience of the stomach bug with the contractor, so I spent from 2pm until 5.30pm with my arse cheeks firmly clenched hoping that there were no suddenly loud noises. I had to time letting rip with the guy using the drill so that he couldn't hear me because the wind was so loud, honestly I could have filled a few helium balloons. Obviously as time ticked on it became more and more dangerous to break wind. Which led to the worse issue of my stomach just expanding due to the sheer amount of gas trapped. By the time the guy left after 5.30pm ,I raced up the stairs and over the course of the next several hours every thing I had ever eaten since 1973 proceeded to exit my body in liquid form.😂😂😂😂😂😂😂

** it's safe now **

Anyway I was fine the next day, thank goodness as we had the plumber back to commission the boiler and a decorator to do the first part of the repair. By Thursday I was on my knee's with tiredness as I really don't cope with early morning starts. I can get up early but having to get showered and dressed by 08.30am is really hard because there is no time available for resting.

I had been sleeping really well for a change and hadn't had to get up in the night and change my pillows to stop a headache . However for some reason on Thursday evening the neck pain I have been experiencing since 11th August 2020 ( RTC ) came back. I had a break of about a week and then on the 29th July the headaches and neck pain came back so severely I haven't known what to do with myself. I am sat writing this with a neck brace on because my neck is just so painful and I am again experiencing headaches day and night. Some of them build up slowly over the course of a day and then become full blown migraines. I seem to be on a permanent diet of sumatriptan at least once a day at the moment. I have no idea why it has kicked off even worse than it has been in a while. It has pissed me off today as I had planned to get some bits and pieces done and due to my head and neck being so sore I can't and that fucks me off when I am feeling ok(ish) with all the other health shit going on.

We did have a lovely two weeks together, even if we ended up with 5 days of contractors coming in. Mr Myasthenia Kid had to go down to his mum's for two days of our holiday and help her with various things. I really feel for him having lost his dad 19 weeks ago he had to face the fact his mum is terminally ill. He feels awful for being an hour away but he also has me and Dembe to care for whilst working full time. It can't be easy for him. He feels like he is never with his mum enough and no one should ever feel like that. I don't think his father's passing has hit him properly, I am fully expecting him to come down with a huge bump when the American Football season starts as this was the thing that he and his dad could talk about for hours. Although there are people at work that he can chat to about the football, it isn't the same as chatting to your dad about your favourite team - they are Washington Fans. 

So I do the best I can keeping things on an even keel at home, managing my health to keep it stable. Try to support him when he lets me in and tells me what is going on in his head. It is hard but at least he has started telling me the days that he is struggling.

Dembe adored having his dad home for two weeks. The first week Mr Myasthenia Kid was home I barely got a look in. It was the Dembe and daddy show. His little boy followed him everywhere. On the second week Dembe suddenly realised I was still here and then shared his cuddles out equally. To be honest I never mind about the Dembe and daddy Love In, as I know I get Dembe to myself for 5 days a week around 9 hours a day most weeks of the year. I love the fact that when Jay is home Dembe has to show him how much he loves him.

Dembe also enjoyed barking at all the contractors we had here as well! It was only on the third day that he stopped barking at the plumber. On the day when the wall was repainted we got him a Venison leg to chew on. He absolutely adored that and it kept him busy for a good 90 minutes allowing the decorator to come and go without being barked at.

The two week's went by so quickly, Dembe and I are now getting ourselves back into a routine again. Thankfully we have both slipped back into our usual work day routines nice and easily.

I forgot to say on the first weekend of Mr Myasthenia Kids holiday we attended a wedding reception in the evening. Dembe went in his Tuxedo and was the belle of the ball! Even the official wedding photographer took his photograph.

To attend the wedding reception we had to do Lateral Flow tests for Covid. Up until then Jay and I had managed to not have to be tested for Covid. Jay was a bloody nightmare, he is useless with stuff like this. I dread anything where he may need eye drops etc as he can't relax and allow you to do it. He scrunches up his eyes and then tells me he isn't scrunching up his eyes. So I knew the covid tests were going to be a barrel of laughs. Our Lateral Flow tests needed us to swab our tonsils 4 times each and then using the same swab, go up our nose and almost tickle our brains with the end of the swab. I did mine myself no issue. I have virtually no gag reflex, nothing happens when something hits the back of my throat. I can't even make myself sick. I knew Jay would be the complete opposite.

I ended up having to get a teaspoon from the cutlery drawer to hold his tongue down as every time I swabbed his tonsils he gagged and his tongue hit the swab. When I did up his nose with the swab he couldn't stop laughing and then he sneezed around 4 times. Poor sod as the first test he did came back as null and void so I had to repeat the process for him. We were both negative.

When Jay was walking Dembe around the block later that day our neighbour asked him if his test result was negative. Thanks to the open patio door in the kitchen as I had done the swabs our neighbours had been entertained by me telling Jay to pull himself together and allow me to swab his tonsils. Only in our house!😂😂😂😂😂😂😂😂

So as you can see it has been a fun packed two weeks. We enjoyed the wedding reception and got to catch up with a few people I haven't seen since I left work, so that's 13 years. We only stayed 2 hours as I was struggling with pain and temperature control. But it was worth it to just see everyone's reaction to Dembe who was treated like a Prince and brought his own water bowl by the staff who worked there.

It did seem strange not to be blogging or thinking up blog posts whilst I took two weeks off.

 I'm back!

Charades

At some point in your life you decide that no matter what you do, for some people it will never be enough. That you come so far down their list of priorities that you have to look yourself in the eye and say I am worth so much more than an after thought. It hurts to know that you mean nothing to them but to stay would allow them to inflict yet more damage upon you.

I have always tried to be honest in what I write about but since I started this blog I have felt like I have always had to write it with one aspect of my life never commented on. I am an honest person, I have shared stuff on my blog that I would have struggled to share in a real conversation. By holding back I haven't been honest, I can't do it any longer.  I am not prepared to do it any more. Pretending that I have a supportive loving family is over. It has been for years but I have been scared into silence by them. I'm done being scared. I'm done being silent whilst they spend their days telling lies about me to all who are stupid enough to listen.

I have left friendships due to being treated badly, people grow apart or something happens and their mask has slips and you decide enough is enough. I never ever thought that I would have to close the door on my family. It wasn't something that I ever wanted to do. Dysfunctional as they are, I love them but I can no longer have them in my life. For years I have been shamed into secrecy and silence. Playing a game of charades, pretending that we were the perfect family, when we were anything but. The decision has been about 5 years in the making, as I gained the strength and knowledge to know that this had never ever been about me but about about three terribly damaged individuals who were incapable of change because they couldn't see what they were doing was wrong.

I am not here to drag it all into the light, there is so much that I would like to say that I could write a book not a blog post.  I am past caring about your reaction to this blog post  because nothing you could do to me now, would be worse than what I have suffered at your hands for the past 47 years. I am sad that I wasn't enough for you, that you felt I only warranted "good" treatment when I was doing things for you. Well don't worry your pretty little heads, the door is firmly shut and I won't be opening it ever again.

There wasn't one thing or action that determined this turn of events, as I say the decision had been 5 years in the making. My eyes were well and truly opened in 2015 in the way that you ran to my siblings defence and cast me as the bad guy as per usual, without even speaking to me. The way you treated me, really broke my heart, I was so upset I couldn't eat or sleep, I was distraught.  You shattered the illusion of the perfect family so you only have yourselves to blame now  that I call time on it.

It was my doctor  that told me that my sibling was using her children as weapons and that it was wrong. In fact it was my gp that opened my eyes to the fact that our family relationships were dysfunctional and that there was an element of coercive control / narcissism to it. Whilst I was there at the appointment begging for anxiety medication and sleeping tablets because your combined actions had destroyed me yet again. Even at my lowest sobbing in the doctor's office I was still prepared to do anything to get my family back because I loved you.

The price of getting you back was for me to apologise for everything I had done. I asked for clarification on what this "everything" was because I was clueless. I was treated like I was being the unreasonable and should just apologise for everything. I was told that unless I apologised for everything that none of you would have anything to do with me. Asking someone to apologise for "everything" as you put it but without quantifying what everything is, is a fucking mind game. It was all about control and ensuring I didn't step out of line. 

I was so desperate to keep you in my life because I really didn't understand where all this cruelty and anger was coming from. I still believed at this point that our family was perfect and that I had obviously done something terrible to warrant your treatment of me. Ever the scapegoat  and peacemaker, I apologised for everything whilst my estranged sibling hurled accusations at me going back as far childhood, all of which were untrue or she had twisted the context to ensure yet again she was the victim. I apologised for things that I knew I hadn't done or had no control of, such was your combined twisted hold over me. How you three behaved then is what broke the spell. I started to realise at long last that our perfect family didn't exist  and never had it was an illusion.

So I went on a 5 year journey trying initially to discover what was so wrong with me that my sister could walk out of my life without a backwards glance and my parents could side with her without even speaking to me. Was I really so bad, so evil that I deserved to be treated like this? I asked my friends did they know this person that had been described to me as a compulsive liar and thief. None of them knew this person or recognised it as me. 

As my eyes opened to the years of abuse I began to ask questions, why did my parents always seem to love me less than her? Why was I the last person to be considered constantly?  For two people who claim they were treated so badly growing up, as the youngest child was favoured by your parents, you really do miss the fucking irony of repeating exactly the same pattern don't you? I read websites, blogs, mountains of books all on the subject of narcissism. Once I scratched the surface of your behaviour it became crystal fucking clear that the issue wasn't me, it was all of you and your twisted fucking minds.

Before anyone claims that it takes two to tango, I am not saying I am a perfect human being. I have flaws as everyone does. But their is a huge difference between flaws and taking positive enjoyment out of causing your own child mental anguish and harm.

Initially I truly believed that the issue was my sibling's alone and now that we were estranged perhaps my relationship with my parents would improve? Unluckily for you, all that research had shown me how narcissists abuse their victims and how they always go through a cycle of love bombing and then when they feel the target has fallen for their lies hook, line and sinker they withdraw or have you walking on eggshells again never knowing when you might take offence or withdraw from me for weeks on end. I soon realised that the narcissism gene wasn't carried by my estranged sibling alone. It could be applied to the pair of you. It was like you were following the narcissists manual, it was so predictable it would have been laughable had your actions not been as psychologically damaging as they were.

For a long time I tried to excuse the way that you behaved. I became a world expert at practising cognitive dissonance  but my body / unconscious mind kept sending me more and more warning signals when I was dealing with the both of you. I would get anxious and panicky at the thought of having to speak to you or see you. Covid lockdowns in 2020 were a positive blessing as it helped me realise that closing the door on that chapter of my life was not going to be some huge deal because as you had already  humiliated me, hurt me, attempted to break up my marriage, ignored me, destroyed my friendships and just so much more, there really wasn't anything left in your arsenal to hit me with.

 My dear friends I warn you now, to be prepared for the smear campaign to start after this blog post if it hasn't already. No doubt they are claiming that I am mentally ill / having a breakdown - that's the usual line or that Mr Myasthenia Kid has brain washed me against them and is controlling everything I do. For the record yes I suffer with anxiety and depression on and off. Mr Myasthenia Kid is too busy looking after me and Dembe whilst holding down a full time job to be bothered to brain wash me or control me. The problem is your lies about Mr Myasthenia Kid tend to fall apart under close scrutiny, if I was really the victim of his coercive control you've had ample opportunity to "rescue" me. Yet you don't you sit around bleating to anyone who listens and paint yourselves to be the victims in all of this.

Suddenly the slow drip, drip effect of your behaviour became a Tsunami, there was no holding back from seeing straight through it. Since stepping away from all the bullshit and continuous hurt I have never been happier. Despite everything you have put us both through, the lies you have told about us to anyone will listen. I am sad, that I don't miss you. A child should miss their parents presence but I don't. There isn't anything to miss, I don't miss being the very last thing you think of, I don't miss parenting you and  I don't miss your shrieking phone calls when I stand up for myself. I thought there would be a grieving period but there wasn't. There is anger, anger that you tried to hijack my husbands grief and push your agenda on us. Stupidly if you had rung up and apologised for that, we would still be in contact because despite all the shit you have pulled over the years, all I ever wanted was to be loved by you and to know that I was enough. I still do love you but I love myself enough to know that having you in my life does me great harm, so I am walking away.

Thankfully after having had 3 months out of your circus I know I am enough, that without you I won't shatter and break. That my life will continue on happier safe in the knowledge that I no longer have to walk on eggshells when dealing with you. I will no longer lie awake at night wondering what it is I have done to upset you this time. My exit from your lives, on my own terms and I won't be keeping quiet. If someone asks I will tell them. If you don't like that, I no longer care.

I have never felt like a victim, I am a survivor, no longer the scapegoat and no longer playing your twisted game of charades.

Campaign update - Success

As I wrote last week's blog Success, I was aware of another success that I had obtained which was keeping the General Medicine and Autonomic Clinic at Derriford Hospital Plymouth open for at least another year and managing to keep Dr Fulton on n his position to run it. Obviously the success is not mine alone, many people were necessary to get us to this place, the members of the campaign group who were willing for their stories to be shared in print and on the television. Members writing to their MP's ( members of Parliament ) to force action, plus a widespread email campaign to many people involved in all aspects of healthcare.

As part of the campaign one member managed to get Baroness Blackwood to raise a question in The House of Lords ( Parliaments upper chamber ). The Baroness also suffer's from EDS and PoTS so knows how important it is for sufferers to have access to proper healthcare and the provision of clinics in the UK is woefully inadequate especially in the devolved nations, Wales, Scotland and Northern Ireland. This was an incredible achievement in itself to raise the campaign profile and get it mentioned for prosperity in Hansard ( the document that records all questions and answers in both houses).

We had some excellent coverage in Plymouths newspaper and their online presence. We had two journalists join the group, whilst the BBC's coverage was poor with incorrect figures being presented as fact, they claimed a mere 200 patients would be without care when the actual figure for those in Derrifords catchment area was 1000-1500 and that was without all those who were dropped from Dr Fulton's list in June 2020 who were not in the hospitals catchment area and have been left without a consultant. You can read  first article here. The second article when we knew the clinic had been saved for at least 12 months and Dr Fulton is taking a much needed break of two months, can be read here. The journalist Molly has been incredibly supportive of our campaign and has produced two excellent pieces that have held Derriford Hospital to account. Thank you to Rebecca for sharing her story and explaining why Dr Fulton is so important.

I am amazed that we have achieved all we have in the short space of time since the 26th March when I asked the question at the hospital trusts board meeting, to starting the group and producing a letter to be sent out to various different groups and people to publicise our campaign. Thanks to Carol who managed to wrangle my 6 page goodness knows how many words into a succinct 3 page punchy letter that was hard to ignore. It is a real shame despite contacting my own MP by post, by recorded delivery and by multiple emails he failed to respond or provide any help at all to our campaign. Yet there were Plymouth and surrounding area MP's who were more than happy to roll up their sleeves and fight for their constituents and this wasn't just based on political parties, we got cross party support. Which shows how effective a campaign can be if you can get people in power interested in it.

Sadly I am aware that as Dr Fulton is on a fixed term contract and this next year marks one commissioning cycle we may still very well be in the same position next year especially if long Covid sufferers have been forgotten. People with Long Covid seem to develop Dysautonomia more specifically PoTS. Having that to use as part of the campaign made it very relevant to the media and it also gave us the advantage with Derriford as closing the clinic would in effect mean they were withdrawing care from an emerging patient group.

The group will be staying on Facebook as long as it is needed, plus now it has turned into quite an effective local group for PoTS patients, which is another thing to be proud of.

At the moment I am still left without a hospital consultant, there is no one based at the largest hospital near me and Dr Fulton was my consultant until June 2020. He is hopeful that he will be able to treat patients who are out of area at some point in the future and I am keeping everything crossed for that. The main aim of the campaign has been achieved for the moment.

I can't lie it has been pretty exhausting organising a campaign in the midst of a significant bereavement for my husband and his family. There have been days when it has felt like my world was imploding, where I was so exhausted that I couldn't continue and then I would get a message out of the blue from a member of the campaign group thanking me for everything I had done and that gave me the strength to continue. I am happy we have got as far as we have in the space of a few months and that I now don't have to be continually thinking about our next move as a campaign.

Whitsun Bank holiday

Sorry this post is going to be a short one as I am just not feeling that great.

I don't know what it is about the first few days of meteorological summer but I am always left feeling really rough for the first few weeks. You would think with the sunshine it would leave me with less joint pain and with my spirits lifted. But over the years I have found the opposite to be true.

Thanks to Facebook memories I know for the last few years every bloody Whitsun bank holiday has resulted in me having an awful migraine. The common denominator in the last few years has been the weather, brilliant sunshine and the fact that I have spent the majority of the day in the sunshine. My Whitsun migraines are ones that even Sumatriptan struggle to shift and give me a searing pain in the centre of my forehead that makes sleep impossible and I am left feeling battered and bruised the following day.

I am still exhausted from seeing family at the weekend and the mega migraine. So much so that I have barely done a thing since, other than get dressed. Today I am still out of sorts and I am freezing cold because due to the UK's wonderfully crazy weather we have gone from 23 degrees ( and more) yesterday to rain and temperatures hovering around 15 degrees. For someone like me who struggles to maintain their body temperature at the best of times, I was just getting used to the heat when I am back into a sweatshirt with my finger nails going blue from the cold ( and shitty peripheral perfusion due to PoTS / ANS dysfunction).  

I find any seasonal shift difficult to cope with at the best of times but this week has been a real shocker after needing fans on constantly to suddenly feeling like I could do with having the heating on or wearing several layers. Until we are in a regular weather pattern I will struggle adjusting to the heat or the sudden drops in temperature. Any swings in temperature upset my joints. So with the change in weather front coming in overnight from yesterday afternoon I was left feeling like my joints had been set on fire. It was just so uncomfortable and I really struggled getting comfortable. The joint pain only adds to the exhaustion because it is a constant battle with temperature regulation versus being able to use heat to ease my joint pain - which is the only thing that works and is not much fun during the summer months.

I did have a lovely Sunday and despite being wrecked for the last few days it was worth the trip. Dembe certainly enjoyed himself, whenever he is happy I am happy!

Master manipulators

When people think of manipulative relationships they often think about the victims of domestic violence and the coercive behaviour that can exist within them. However it isn't just domestic violence victims that can fall prey to this kind of behaviour. Many do not realise that these kind of relationships can exist within families, friendship groups or in the work place. Often it is not until the person has disentangled themselves from the manipulator that they realise the psychological abuse that they have been subjected to.

When you are chronically sick it is all too easy to become the victim of a master manipulator. These are people that like to exert unprecedented control over your life under the guise that they care or are caring for you. Master manipulators can be family members, friends or carers and once in your life can be very difficult to get rid of.

A few years ago I fell under the spell of a master manipulator. It's embarrassing to admit that I fell prey to this woman's evil schemes but now looking back I can see that I was particularly vulnerable. I had lost a lot of self confidence with no longer working, I was fighting the medical profession for a diagnosis and I was being treated badly by another friend who had become bored with my perpetual state of ill health. I had also been subjected to this kind of behaviour by other individuals in my life for a very long time .I was the perfect victim and she seemed initially like the perfect friend, too perfect. 

Manipulators play the long game, sometimes their plans are literally years in the making. Initially they seem absolutely perfect it is only over time that their agenda becomes clear, to dominate and use the person to achieve their own goals. At the start of the relationship the manipulator bides their time assessing their victims vulnerabilities. Storing every piece of information away to be used at a later date when they wish to start dominating the victim. They never expose their game plan in the beginning as obviously if a potential victim becomes suspicious of their motives the ruse would no longer be able to continue. This is the exact pattern of events that occurred with my friend Bertha* (* names changed to avoid legal action, not to protect the innocent).

Bertha came into my life like a breath of fresh air, I had known her in my previous life and had found her pleasant enough. It was quite a surprise when she messaged me out of the blue and said that she and a mutual friend would like to come and visit me. As social contact at this point was quite rare other than the two friends who had stuck by me, I was flattered that they would want to come over. My first mistake was made I was too grateful for her visit. The friend that accompanied her I never heard from again! I imagine that Bertha had realised that I was socially isolated and provided good victim material.

Initially Bertha was like any other normal human being. She had my sole undivided attention as she wasn't working and would come over and see my several times a week. Slowly over time I began to notice small changes, where once helping me and hubby out on the odd occasion, mainly dog care so I could attend appointments, she started to arrive late so that I would only make the appointment by the skin of my teeth or arrive late. Once I asked her to take me to a medical appointment as without her help I wouldn't be able to attend. She seemed delighted to be asked, which to be honest at the time seemed a little odd due to the fact she had let us down at the last minute several times previously when we asked for her help. Her mood changed drastically when I told her I did not want her going into the consultation room. My health appointments are private, I needed to discuss some ongoing issues with my consultant safe in the knowledge I had complete confidentiality, as any patient would. 

On the drive to the hospital she went on and on at me trying to wear me down. She didn't mind coming in with me, she had driven me there surely she should get to come in? Why was I being so secretive did I have something to hide? We share everything why won't you share this with me? The 30 minute drive felt like a lifetime. When you don't allow a master manipulator the thing that they desire you are faced with a barrage of either abuse of emotional blackmail. Even whilst we sat in the waiting room she continued her assault. When she wheeled me into the consultation room she made a move to sit behind me. I was adamant however that she wasn't going to be privy to the conversation and politely asked her to "close the door on her way out." She let out a huge sigh and left the room.

Having her drive me to the hospital and take me to the appointment was one of the weirdest things I have ever gone through. Looking back now I can see it was just a means of control, she felt her reward for doing me a good turn should be hearing confidential medical information pertaining to me. When she wasn't given her reward she subjected me to emotional blackmail. I was left feeling like a bad person for standing up to her, yet hers was the behaviour that was totally unacceptable. The drive home was mainly conducted in silence, the silence was only punctuated with her sighing. I kept my mouth shut and pretended to nod off. I wanted to use the excuse that I was tired and needed to have a lie down to prevent her demanding to come into the house for a cup of tea. Her behaviour that day had made me feel uncomfortable at the time I couldn't put my finger on it. If I thought that was strange things would eventually take a weirder turn.

In time I noticed that things were very one sided on the conversation front. She would ask me a question and then proceed to turn the conversation back to her favourite subject, herself. I felt like I had become her counsellor and joked about it. I felt sorry for her that she seemed to have so many problems in her life. Many times she complained about the fact people she was friends with her suddenly dropped her with no explanation. If it had been one friend I could understand it but it wasn't over time it appeared to be every friend she ever made had suddenly dropped her and completely cut her out of their lives. 

A few years into our friendship I made a new friend. She came around every Thursday and stayed for a few hours. I enjoyed her company we had quite a few things in common. There was no pressure in this relationship it was natural and easy going. This new friendship highlighted the unease and dread I felt every time Bertha said she was coming around. Unless you suffer from an anxiety disorder the thought of a friend coming over to visit you should fill you with happiness. My feelings were the exact opposite. This was what I would come to realise a RED FLAG and I should have paid more attention to this and the many others in my life. Having panic attacks before people visit you or when their number flashes up on your phone isn't normal. If someone is inducing those kind of emotions then you need to get the hell away from them.

Initially Bertha made out she was really happy for me to have a new friend. She started buying me small gifts to show me how much she appreciated our friendship. She decided that she was going to start hugging me more or sitting next to me, rather than how we usually sat sprawled out over the two sofas. As my new friendship flourished, Bertha started to become more critical. She was never critical of me directly but critical of my house, claiming things were broken when they weren't and then my dogs when she got no reaction from me regarding her other critical comments. Out of the blue she told me Frankie had bitten her hand. I asked her to show me where he had bitten her, it was important because as much as I love my dogs if they were ever to bite someone and injure them, they would have to be put to sleep. When she showed me her hand there was no mark on it. However her complaints of being bitten now happened every time she came to the house, yet no skin was broken, there were no teeth marks and no blood was spilled. It started to really irritate me but I let it go as I felt sorry for her. 

As her attempts to criticise me failed to provoke a response she tried a different approach. She had always been bad with time keeping and responding to text messages taking 12 hours to 3 weeks to answer a message. I really dislike lateness and people failing to respond to texts in a timely manner. Obviously there are times when you can't respond to a text message when you are working or driving for example. She had heard me complain about these bad habits previously so started to use this as her form of control. Now on a regular basis she would turn up 2 hours later than the arranged time of our meet up. She would not respond to texts blaming her phone signal. Initially I believed her over the phone signal but seeing how much she was on it I couldn't understand why she was taking up this technical fault with her service provider.

About this time she was beginning to get caught out in her own lies. We had been friends for about 4 years and she clearly couldn't remember the lies she had told. When we first met she told me she was on the waiting list for two operations yet 4 years later she was still waiting. I know the NHS is slow but it isn't that slow. When I questioned her about it she claimed she had never been put on the waiting list. She had also lied about various medical conditions. When challenged she would claim that I was confused and that she had never said that. Her stories were beginning to unravel, I let her think that I believed this explanation and then started to deliberately ask her questions about other things she had told me over the course of the four years. I have to admit I got some sort of perverse enjoyment from it, probably because I felt I was playing her at her own game for the first time we were becoming equals.

As her lies were starting to catch her out and she knew that I was beginning to realise that she wasn't the friend I had initially thought she was, she started a new attack. My husband has two days off per week and these are the days on which we spend time together. I keep these days clear of friends coming over as I want to spend the time with the man I married. All my friends respect this, obviously if there was some kind of emergency or it was the only day that they were free then I will spend time with them. However I feel it is important that my friendships are not to the detriment of my relationship with my husband. As Bertha knew this she started turning up on hubby's days off claiming that it was the only time she was free. If I said it wasn't convenient I was met with "I haven't seen you in ages", "I will just come over for an hour or so". I felt due to everything that she had done for me and the fact that she came to visit me when others didn't that I owed her and I never felt strong enough to give a flat out no. I have terrible problems saying no to anyone that I care about.

My husband always tried to make himself scarce when Bertha came over. He didn't actually like her very much and she had started flirting with him. It made him uncomfortable and embarrassed for her. When it first started he had laughed it off politely and decided not to tell me. Unfortunately she wouldn't take no for an answer and her flirting lost its subtlety and became an all out attack. It was no longer taking place when I was out of the room but in front of me. At one point she stripped off down to her bra, when Mr Myasthenia Kid was in the room on the pretext she wanted to show me her new bra. As she was probably a size 30 (UK women's size at this point), it wasn't pretty. I have lots of female friends. I have never stripped off in front of any of them to show them a new bra.

I knew that the friendship was coming to an end, Bertha had pushed me to my absolute limit. The thought of her visiting me made me anxious, she made my husband and I feel uncomfortable in our own home and she was persisting with the ridiculous lie that Frankie was biting her, in the full knowledge that his life was at stake when she said that. She was becoming dangerous and it had the feel of single white female about it. I talked it over with my other friends, who had already made it clear that they thought she was odd and possessive. My problem is I worry too much about hurting other people. It seems the older I get the more I worry. I never seem to take into account the hurt they have caused me and by continuing to have them in my life would cause me more pain. That is the master manipulators spell and I have fallen under it too many times.

The problem is having been exposed to these kinds of relationships from a young age I simply didn't realise that no matter who the person is in your life, you should never feel emotionally blackmailed by them, subjected to the silent treatment by them as punishment for not doing what they want you to do. You should never feel anxious at the prospect of dealing with them. You should never feel that because of who they are you should endure a relationship where you are an after thought and are quite often made the scapegoat when things go wrong in their lives. That's not love, not family or friendship operate.

The opportunity arose to do the dirty and end the friendship. I had arranged for her to come over to the house at 13.30pm. As on numerous occasions she had arrived more than two hours late, I had text her at 11:30pm to check if she was still coming over, I wasn't very well and if she wasn't coming I would be going back to bed. This had no response, so I messaged her via social media at 12:30pm, again no response. The prearranged time for our meet up came and went. I eventually heard from her at 14:30pm via text telling me that she had just woken up and could she come over at 16:00. By this point I will admit I was seething but I was scared of her also. I kept my reply short and sweet and told her I was in bed and to forget about today. she immediately text me back all sweetness and light asking what was wrong. I told her that I was very disappointed in her and that I would message her in a couple of days when I had calmed down. 

I had taken back control at long last but I was shaking with fear as I pressed send. I had no idea how she would react, whether she would try and plead her case or go nuclear. She went nuclear and sent me a stream of abusive texts telling me I was an ungrateful bitch after everything she had done for me and that is the one that I can repeat. The others called me all the names under the sun. When I was faced with all this vitriol it was only then I realised that she couldn't stand the loss of control. This was the first time I had ever stood up to her and she couldn't stand it. After the 5th or 6th text I decided to block her number from my phone and then immediately block her from all my social media accounts.

For about 48 hours my anxiety hit the roof, I felt like I had been a terrible person to cut her off like this but it couldn't go on. This all happened over 7 years ago and I have had to call time on other friendships, nothing as dramatic as this and the anxiety wasn't as bad when I realised I deserved better. 

When you realise that friendship, family relationships, love are not something that operates on a transnational basis as in what you can do for them, you realise by walking away from them you lose nothing but the constant pain they cause you. You realise that normal people don't behave like this, they don't view others simply in terms as what they can do for them, they like people for being themselves. Only happiness can come from realising your worth.

Back from my blogging break

I am sure regular readers will appreciate why I had to take a break from blogging. Well I am back, my health is shit, which I fully expected with all that has gone on. Something had to give so since I last wrote I have endured a hideous kidney infection that almost saw me hospitalised, a flare up of gastritis that has stopped me sleeping as it has been so painful. Then add in vertigo and a couple of migraines that has been my last few weeks. I needed to take a breath and just focus on my boys, my little family and get through this awful time. 

I think I can speak for both me and Mr Myasthenia Kid that we have been blown away with all the cards we have received, messages etc. People contacting us to ensure that we were ok, dropping my medications around, offering to take Dembe out, getting shopping for us. We needed that help and it was very much appreciated.  Whatever they could do to help, nothing was too much trouble. 

I also want to say a huge thank you to those of you who made charitable donations to MND, on Rogers behalf that was exceptionally kind of you.

Grief is such a weird thing and what Jay and I were really shocked by has been just how very tired we are pretty much all of the time. Most days when Jay is day off work we can be looking at each other at 6pm and asking if we are going to bed. What we forget is for about 6 weeks prior to Jay losing his dad things had been pretty stressful. Whenever his mobile went at an odd hour - very early morning, late at night my heart would stop. I would dread whatever the news was that we were about to receive. We realise now how very draining the situation was, how we were constantly living on our nerves. Both of us are having issues trying to get  back to a normal state. After weeks of sleeping lightly we are both still waking at the slightest sound. I am sure given time we will start sleeping better.

At the moment we are just making our way through each day as best as possible. All I can do is be there for Mr Myasthenia Kid, take care of the small stuff so he doesn't have to worry about anything else. Both of us have developed the attention span of gnats and memory spans of a goldfish. It makes things tough and it would be quite easy to get angry about the others lack of attention but we know that the anger is also another part of the grief.

Mr Myasthenia is struggling but putting a brave face on. I know that he wants to be strong and in control but I do worry that at some point in the future this approach may bite him on the ass. He has always been one to bottle stuff up and I don't want to become a nag continually asking him how he is doing. He will speak to me when he is able.

I do understand with living away from his parents how he can insulate himself from the reality of what has occurred. He doesn't have to deal with the issue because he can pretend that it hasn't happened. He isn't confronted with the reality every day. In some ways that is good and in others I worry that it will prolong the acute stage of grief as he will keep pushing it down and not dealing with it.

He has been very keen to have some photos of him and his dad around the house. I framed the order of service from the funeral so that he has that  and I managed to find some wonderful photos of Jay and his dad at the NFL match at Wembley that watched in 2008. One of his brothers also found a really lovely one of him with Roger so I have got that in a treble aperture frame.

During the bank holiday weekend we were lucky enough to go down and visit Mr Myasthenia Kids mum. We held the meeting outside in the garden. In the sunshine it wasn't too bad and the garden is very sheltered. It was nice to be able to pay my respects in person, although a two hour visit wiped me out for the rest of the day. It has been around 6 years since I had a proper visit, although we had a flying one in December last year. Dembe certainly enjoyed the garden and being chased around by Jays brothers new puppy.

Things have been all over the place in the last 4 weeks or so. Most of the time I am struggling to remember what the day of the week is let alone anything else. I am now trying to get back into a routine so that things feel more settled. 

Having Dembe has been a godsend, he has instinctively known on the days when Jay is struggling and spent the days squidged up to his dad on the sofa and at night sleeping in his room.

Health wise I am waiting for a neurology appointment. The hospital rang a few weeks ago but I had to decline as it was the same week as the funeral. I wasn't ready for the added stress of seeing a neurologist and I didn't want Jay having any added pressure that week.

I received my second Covid vaccination on Tuesday 4th May. We are still waiting for Jay to get called for his but he has a few weeks yet before the 12 weeks is up. I am happy to report that I have had absolutely no side effects from the second vaccination. I was expecting that I may end up floored by it like I was with the first one but nothing at all. Not even a sore arm. Fingers crossed that Mr Myasthenia Kid gets called soon.

We are taking a break from Dog training for a bit as we both just don't have the mental capacity for it at the moment. We are both crawling into bed most nights just after 7pm and asleep not much later. We have also been sleeping until at least 8am when Jays shifts allow. We are just so very knackered. It has been like 100 life times has been crammed into the space of a few months and currently physically and mentally we have nothing left to give.

I will try to blog regularly again but it maybe hit and miss for a little while longer.

Covid Vaccine - my experience

Last Friday I was lucky enough to receive the Covid vaccine, the vaccine I received was the Oxford AstraZeneca one. I was alerted by text message the previous week to let me know that I could book my appointment to receive the vaccination, as I was in group 6. Which is the current group that is being vaccinated in our town. We are incredibly lucky that the hub for our part of the county is in my small town. I feel sorry for those who live further afield. But for once living where I do has a benefit.

Mr Myasthenia was also messaged to say he could book in as he is also in group six and my unpaid carer. He booked in for 9am and I booked in for midday so that Dembe our Labrador wasn't left. We were excited and nervous at the same time. I had read quite a few posts on line with people being quite poorly after the vaccination. You get the same when it is flu jab season so I do tend to take these with a pinch of salt. Just because someone else has a reaction doesn't mean you will.

At around 9.10am on the Friday morning, Mr Myasthenia Kid messaged me to say he had his jab. That the process at the hub was like a well oiled military machine and that he had just finished waiting the required 10 minutes after his vaccination. He had the Pfizer one he told me proudly. The same one that his mum had the week before Christmas. He let me know that he was fine and that he hadn't even felt the injection go in. Which for him is a huge deal, as he is a little scared of needles. Having to have gas and air for his travel vaccinations before we got married in 2000. He said he would come and get me for mine a bit later and not to worry, he didn't have a headache or any of the other known side effects.

Mr Myasthenia Kid arrived just after 11.35 to take me to the hub to get my jab. He talked me through the process. I suffer with social anxiety so new situations can cause me to panic a bit. I am usually really good at covering this stuff up and most people who know me wouldn't believe me if I told them I suffered from social anxiety. My social anxiety has increased during lock down due to not seeing anyone on a regular basis. I would have to navigate the vaccination hub alone, without my security blankets of Dembe and Mr MG Kid. 

I remembered my face mask - I don't go out other than when Jay takes Dembe out and I sit in the car, so I don't have to wear a mask very often. I put that on as soon as I arrived in the car park. I was very grateful for my run down of how everything is done at the hub as I didn't feel so anxious. There was a hand sanitiser station on entering the building. I booked in at the reception area and joined the queue. The lady at reception gave me a leaflet for the Pfizer vaccine but explained supplies were running low and I may be given the AstraZeneca one, in which case they would provide me with a leaflet for that.

My only complaint about the queue was that although the marks on the floor were spaced at every 2 metres they didn't have chairs at every 2 metre gap. Which if you are crap at standing, many people with a wide variety of complaints are wasn't very well thought out. The queue moved incredibly quickly. I would say that there were at least 20 people ahead of me and I was at the front of the queue in less than 10 minutes.

Once at the front of the queue you had to wait until one of around 10 booths were empty. Inside each booth was a member of staff booking you onto their computer and the person who was injecting you. I had remembered to print off my list of allergies from my computer which I try to keep updated. I like to try and carry a copy of this list in my handbag or coat pocket when I go out in case I am ever involved in an accident. My dad had been quizzed about his allergies two weeks prior to my appointment. when he went for his vaccination so I knew this was incredibly important. 

Mr MG Kid told me that they had issues locating him on the computer when he was getting his jab. Low and behold they had the same issue with me. It was funny as the girl that was imputing the information onto the computer was someone I hadn't see nor spoken to since probably around 2010. So it was hilarious when she said "is that Rachel?" and I said "Rachel?" as that is her name too. So she knew all my details to put into the computer but it was a situation where it was saying no! Rachel then asked me if I had anything with my NHS number on. Luckily I did, my list of allergies contains my hospital number and my NHS number. Rachel popped this on the computer and as if by magic my details appeared... exactly the same as she had typed them onto the screen a moment earlier.

Due to my list of allergies, the person that was doing the injection had to go and speak to the doctor in charge. She wanted to ensure that there was nothing contained within the vaccine that I could have a reaction with. When she came back she said that when my medical records had been reviewed by my gp practice they has put me down as needing the Oxford AstraZeneca one due to the allergies I have to a long list of medications. They double checked that I didn't carry an epi pen or had an allergic reaction to a vaccination previously. Then without me even feeling it I had my vaccination. Due to the fact I am have allergies I was asked to sit and wait for ten minutes in the area they have near the exit. Normally with the Oxford AstraZenica one you can leave straight away. With the Pfizer one everyone has to wait 10 minutes.

I sat in the waiting area and within a few minutes I started to feel hot, weird and I had a funny feeling in my chest. I started to get tunnel vision. So I asked someone for help. I was lead to booth 11 which had a bed on it. I lay down and my face felt like it was burning. As soon as I was flat on my back I started to feel a lot better. I think I simply had a panic attack. The combination of having a nasty allergic reaction previously, being hot, wearing a face mask and being anxious, was too much and I panicked pure and simple. I lay down for around 5 minutes. As soon as I felt ok I sat up, then waited to ensure I was ok  sitting up and then made my way to the exit. Dying of embarrassment for being that person, who is probably being accused of being a drama queen.

Friday afternoon a few hours after the vaccine I started to feel very tired and had the chills. As we have a digital thermometer in the house I checked my temperature regularly as I know some people have spiked a fever after the vaccination. My temperature remained normal, throughout the next few days. I would say I felt under the weather but was quite relieved that I didn't have the headache a lot of my friends had said that they got within hours of having it.

At 1am Saturday morning I woke up racked with pain, all my muscles were burning, when I got out of bed to go to the toilet I was freezing cold. I felt like I was coming down with the flu. I took some paracetamol and went back to sleep. My left arm where I had the jab was very sore, the whole muscle ached. All day I felt pretty out of it, horrendously tired, muscles aching as the day went on the pain got worse. By 17.30 I went back to bed, I took regular paracetamol and drank loads. Resting and staying in bed was the only way to go so I got a new tv series to watch and lay in bed with that on.

When I woke up on Sunday initially I felt a lot better than I had on Saturday morning. This was temporary though. After a shower and dressing I was wiped out. The muscle pain had reduced and was now just uncomfortable. However on moving around more than a step or two I was shaking quite violently. I was struggling to concentrate and just felt really awful. At 3pm I gave up trying to remain out of bed and crawled back in.

What I also noticed on Sunday was that my glands in my neck, groin, armpits and stomach had swollen up. I had glandular fever when I was 21, many years ago now and since then whenever I am poorly with a flu like illness I end up with my glands swelling up. They get quite painful, they ache and no pain relief helps. The glands in my neck were up so badly that they were giving me earache. I tried to see the bright side and that my immune system was doing its job. Having chatted to some other younger friends I had been quite lucky. Some of them who also had the jab on Friday still hadn't been able to get out of bed for anything other than the toilet. 

The weird thing was whenever I was lying down and doing nothing I actually felt ok. However attempting to get up and do stuff made me feel awful. So they only thing I could do was just lie around in bed and hope that tomorrow it would be better. 

Sunday into Monday I slept 12 hours, which for me is a ridiculous amount. I usually get by on 7-8 hours. I spent years managing on much less so I am happy to get more sleep these days. I felt ok on waking but didn't say it out loud as I was terrified the minute I did anything I would be feeling awful again. I have to say thank goodness the side effects have gone. I am feeling so much better now. The glands in my armpits are sore but all the other glands have gone back down. My left arm is just sore at the site of the injection and only hurts if pressure is applied to it . I am at long last out the other side of it. I am not exactly thrilled that I will probably end up going through this again in 12 weeks but hey, my odds with contracting Covid weren't good and I wasn't prepared to just take my chances with it.

My Myasthenia Kid who had the Pfizer vaccine, had really bad fatigue on Friday. He felt really drained and his arm was very sore. Saturday morning he still felt quite fatigued and his legs were aching. However this wasn't enough for him not to go into work. By Saturday evening he was through the other side of it and the only issue he had was a sore arm at the injection site and nothing more. When he had the flu jab with me in November all he had was a sore arm where as I was poorly for a few days.

I would still have the vaccine even with knowing this. It is short term discomfort and feeling rough, to be protected. I know those who are anti - vaccine won't agree and that's fine, that's your prerogative.

You don't look in pain

A week or so ago a Facebook buddy of mine posted a quote on  her news-feed and it resonated with me. I expect it resonated with a lot of people because many of the people I am friends with online are people I have made friends with through Chronic illness groups. The thing we all have in common and a lot of the time we are not believed when we say we are in pain every single day be it through Ehlers Danlos Syndrome, Fibromyalgia, Migraine, Arthritis, adhesion pain etc etc. There will be people in your own lives that you have no idea deal with pain every day all day because they have been conditioned not to speak about it or just don't want to come across like they are looking for attention or sympathy.

This was the quote my friend posted;

I have spent some time this morning trying to locate the source of the quote so I can give an attribution to the author and unfortunately I can't find it. I have read some quite interesting pieces of information from blog posts, medical sites and chronic pain forums I will post some links at the end of the post.

Many people with chronic pain are disbelieved , especially when there is no "evidence" of what is causing the pain or the images from scans or x-rays don't correspond to the level of pain people are stating they are enduring. I had the same when I was suffering from terrible pains in my knees with my right knee being the worst. I was getting sharp pain under the knee caps when going up steps and suddenly out of nowhere when standing / walking.  I was taking morphine so it was accepted by both me and my gp that it must be bad whatever it was for me to be feeling it...when the x-rays came back it showed really mild arthritis. Due to it's location I couldn't be offered an injection into the joint. It was something I would just have to put up with. He suggested some exercises to help, which mainly consisted of doing plie's. After I did one in front of him and my knee caps made a sounded like a shotgun being fired he helpfully suggested that I avoided those! I still get the pain along with lots of others courtesy of my friend EDS, Migraines, Arthritis, Bowel Adhesions, Spondylisthesis etc etc

It's not just the medical profession that have difficulty accepting that someone is in pain. So many times I have been involved in conversations where people have made judgements about others saying "well it can't be that bad they manage to do X.Y. Z." It is even sadder when it is people within the same community who know what it is like living with a chronic health condition and the pain that comes with that. Many of us do things that we enjoy as a kind of pain relief. When my Spondylisthesis shifted a few weeks ago and left me in excruciating pain, that was waking me at night, I still crocheted, used my sewing machine and my embroidery machine. I ensured I kept to strict time limits do never sitting for more than 15 minutes without moving and ensuring I had adequate pain relief onboard. If I hadn't have been able to distract myself through those activities I would have had no relief at all. Yet some may have been quick to judge saying " well it can't be that bad she is still sewing etc". I can assure you it was. There were times I would sew with tears rolling down my face, or feeling sick because the pain was so intense I was struggling to stand.

If the pain is that bad why don't you lie down?? Was something I was asked. Well I would love to lie down but my back would never put up with me taking to my bed for days at a time as much as I would love to. My back manages about 8-9 hours of being in bed and then it gets so painful and stiff that lying in bed becomes part of the problem, I am the same lying on the sofa. My back hates being immobile, everything seizes up. It was the biggest issue I had when I needed to do strict bed rest when my CSF leak was at it's worst in 2016. I just couldn't do it without being in agony but then sitting up made me feel like my head was exploding. On those days I ended up hugging the toilet bowl as the pain was making me vomit.

The quote is true people with chronic unrelenting pain do operate at levels of pain that would floor most other people. I never know what level my pain will be at from hour to hour. Today I am in a lot of pain, I have no idea why. I haven't done anything to cause that pain. My pain is in my hands...great when you are typing, my hips, lower back, knees and ankles. I have had a hot shower, hot water bottle and taken pain relief but nothing is touching it. The pain doesn't stop, it is at about a 6/10 for me. I will carry on with my day as normal being aware of that pain despite doing other things. For pain to actually stop me doing something it has to be an 8/10 or above. Last night I nearly didn't go to dog training as my bowel adhesion's started up after eating dinner. I have been having problems with my adhesion's a lot the last few weeks. I managed to get the pain under control with buscopan and a huge pint full of peppermint tea. I was lucky sometimes it refuses to settle and just gets worse and worse until I am on the verge of passing out. Then it just tails off as quickly as it started. 

Adhesion pain is one of the pains that will immediately stop me doing something. It feels like someone is attempting to remove my intestines through my belly button. It is a sharp pain the comes in waves. So the respite can be seconds or minutes before the next wave hits. Some days it starts as soon as I take my medication in the morning and everything I eat or drink that day will be followed by the pain. Other times I will be fine all day then in the evening I will end up screaming in pain due to it starting up out of nowhere. I can go months without experiencing this pain and yet at other times everything I eat and drink for weeks on end is an ordeal. I am in one of those phases at the moment. Yet if you were to look at my Myasthenia Kid page on Facebook or my personal news feed there would be no mention of it. Because although it really fucking hurts it is a pain I have lived with since I was about 5 years old. 

What really upsets me when I am struggling with adhesion pain is when people who should really know better say something like "are you sure it's not trapped wind as that can be painful"...my standard reply to that is "how many people do you know have fainted from trapped wind?" or " how many people have ended up having major surgery due to adhesion pain?" That usually shuts them up. But it is incredibly hurtful to anyone suffering pain to be so casually dismissed as having something that yes can cause pain offered up as an explanation with the implied suggestion that you are making a meal of things or are a drama queen. I do often wonder why people do that, if someone broke their leg and were in pain I wouldn't suggest they had stubbed their toe. Just because you can't see my pain or have never felt it, doesn't mean it doesn't exist.

Also two people can have the same condition, it doesn't mean their levels of pain are the same or that the condition will follow the same path. Everyone's journey is different. Some people have a high pain tolerance and what they can endure would have others out cold. I know people in the EDS community that have endured root canal treatment without any anaesthesia because it doesn't work on them. That has me sweating just thinking about it. I like to think I have a reasonably high pain threshold except when it comes to my mouth. I have gone through the removal of the side of my big toe nail without pain relief, I have had a lumbar puncture when my local anaesthetic has worn off and pretended it hadn't. I have run company inductions ( when I was working ) with adhesion pain that had me crying in the toilets every time I left the room when a video was being played. I looked fine when I was doing the induction even though I felt as if I was going to faint.

I get sick and tired with the majority of peoples idea that pain somehow shows on a persons face. I have seen summing up by judges in disability cases saying that the person is showing no signs of pain or they have been seen laughing and joking so the pain can't be that bad. Up until my pain hits a 8 you will find me cracking jokes, after that I start getting cranky and grumpy. When my mood changes with pain you know it has got bad.

We need as a society to stop judging people, stop trying to think because we have had that medical complaint that we know all about it, everyone experiences things differently. By minimising it or not believing them we take away their voice. As it is so many of us are already battling the medical profession to take our pain seriously, we don't need to be battling friends and family as well.

Even when I am in horrendous pain he makes me smile.

https://www.health.harvard.edu/blog/chronic-pain-the-invisible-disability-2017042811360

http://nationalpainreport.com/future-doctors-unprepared-manage-pain-8822008.html