I am not very good with change these days, when I worked it was a culture of adapt or die as things changed constantly but when your world is as small as mine changes happen less frequently and when they do they can rock your world.


For the last 20 years I have had the same neighbours. When I moved into my flat back in 1996, my neighbours rented the flat below mine. When we moved to our current location I had no idea that my old neighbours would be living next door. We laugh about it and say that I am stalking them but it was purely chance. They lived on the street I wanted to live on but when they moved I had no idea where they had moved to. So when we were looking around the house for the first time P stuck her head out of the bedroom window and accused me of making the house prices drop. We have been good friends with our neighbours for years and know that should we ever need them day or night they would be there for us. As they proved the night or more correctly 3am in the morning six years ago when Jay was hit by a drunk driver in a stolen car. Having no family in Exmouth means that we rely on friends to help us out. Our friends have become like an extended family, so it has been very hard to accept that this will no longer be the case.


On 30th November P let me know that her tenancy had been terminated. Through no fault of their own they would have to move, the landlord had decided that a member of their family needed the house and now P and her long-term partner would have until the end of February to vacate the premises. Obviously it has been a deeply stressful time for them both, house rental prices in Exmouth are astronomical, when you add in agency fees and the cost of moving, it makes it very difficult to find somewhere. Thankfully they have but hubby and I are left without them. They will still be in Exmouth but currently it feels to me like they may as well be moving to the other side of the country. It seems selfish to be sad that they are moving when it is their lives that have been turned upside down but I hate it. I have been left feeling very unsettled and it’s not the only change I have had to face.


A few weeks into December we received a letter from our doctors surgery that informed us that our gp was leaving the practice mid February. Our doctor is one of those gp’s that goes above and beyond for us. He is the only one that has ever understood the stress placed on Jay looking after me. Whenever I speak to him he always asks after Jay and he does the same when hubby speaks to him. If I ring to speak to the duty doctor he always rings me back, as he knows all my drug allergies and various medical problems. We know that whenever we need him he will be there and now he is going. I am terrified of what my new doctor will be like, my current gp has learnt alongside me as I have been on my journey of understanding EDS and PoTs / Dysautonomia. When he took a sabbatical last year he worked as a gp in a different part of the country and diagnosed a young woman with EDS. He proudly told me this when I saw him on his return, he told me if he had never had me as a patient that wouldn’t have happened. That was a really nice thing for him to say. I know he’s not a friend he is our doctor but I am really going to miss him. With both him and my neighbours leaving it feels like our safety net has been pulled out from under us.


I can’t say that I see our neighbours or our gp on a regular basis but the thing is I know they are there if I need them. When things go wrong I know if it’s medical I can call the surgery, if it’s something to do with the house I know I can rely on P’s partner to help. Numerous times he has helped us decorate, nail down flapping fence posts and rescue the dogs on the night Jay was hit by another car. They have acted like family, I am worried that we will lose that when they have moved.


I know they aren’t moving to the other side of the planet but I also know how easy it is to lose touch with people. I experienced it myself when I moved from Plymouth to Exmouth. I tried keeping in touch with my friends but it felt like it was all one way traffic. Unless I rang them I never heard from them, I guess it was out of sight out of mind. I have also had friends leave the workplace, still living in Exmouth but you lose the friendship when you don’t see each other everyday.


The change or the prospect of change has hit me hard and now my anxiety levels are through the roof. I am no longer sleeping properly (I haven’t done since P told me the news on 30th November) and I find myself getting anxious over the slightest thing. My anxiety is waking me from sleep and I am constantly having my stress dreams where I am trying to read a book but instead of letters there are symbols and the pages are turning too fast for me to read what is on the page. I get so annoyed with these dreams that I wake myself up, which then leads to less sleep, which then leads to an increase in my pain levels. I just can’t seem to win at the moment.


I am however winning on the gluten-free front. I have had around a week now with no stomach pain, diarrhoea or excessive wind. It seems really weird not to be guffing all the time, just goes to show what a an old wind bag I was previously. It is really weird not having a stomach that blows up the minute you eat or drink anything. Since giving up gluten I have also had no reflux whereas over Christmas I was waking up during the night with a mouthful of vomit, choking. My skin rashes are also clearing up and my hidradenitis suppurativa has also improved. I don’t want to say my HS has gone as I will end up with a very painful abscess
This week is a busy week with a gp appointment (probably the last time I will ever see him) and I have my caffeine infusion on Thursday, today if you are reading this blog on the 12th January. I class any week with more than one appointment in it as a busy week as I will need several days to recover afterwards.


Mollie on her dad’s new Star Wars bedding

New Year

I haven’t seen the new year in for several years, I’d love to but by 8pm most nights I am in bed, if not asleep, well on the way. The Myasthenia Kid household is just pure rock and roll when it comes to celebrations.




New Year’s Eve is something I have hated for quite a while, even as a teenager I could never see the fun in standing around in a packed pub, with a load of strangers vowing to stick their tongues down your throat on the stroke of midnight. In fact I have only ever been out once (twice if you count a house party where we saw in the year 2000) on NYE and that was a disaster as a wisdom tooth decided to erupt, dragging a piece of gum up with it meaning every time I closed my mouth, I felt like I had been kicked in the face. Due to the severe levels of pain I had to call it a night around 1am, which I found out did not go down well with the friend I was with. It’s lovely when you find out through mutual friends your pain has ruined someone else’s evening! I also had to wait until January 2nd before I could have the bloody thing removed. I don’t know if that tainted my feelings towards NYE but another year passing me by doesn’t bring out the best in me.


The New Year also brings an anniversary, January 5th 2007 I came down with the worst migraine I have ever experienced. When the migraine headache cleared, I was left with the right side of my face feeling like it was coming around after a dental anaesthetic, by 11th January (2007) I developed ptosis. This year these dates will mark a decade of ever worsening health, when normal life finished and navigating the world of chronic illness started. This year more than ever I couldn’t shift the black cloud that was hanging over me on December 31st.


This last Christmas holiday period has been one of the worst I have experienced health wise. Normally I rally over the Christmas period, not this year. My PoTs ( I do hate it when I say my xxx condition but what else can you say?) was relatively well-behaved, other than two micro blackouts. My EDS has been naughty but just for two days however it was so bad that I would have happily ripped out my spine and pelvis if it had been at all possible. This year for a bit of variation I have been plagued by GI (gastrointestinal) issues.

To give you a bit of background a first degree relative of mine is probably going to be diagnosed with Coeliac Disease. In this person the disease has been asymptomatic or silent on the GI front. Some might think they have been lucky as GI symptoms with Coeliac Disease can be pretty awful but the problem with asymptomatic CD is that it can wreak havoc elsewhere in the body. Many people think that CD just means that you can’t eat bread or more specifically anything containing gluten but they don’t know why this is. To explain it quite simply the body sees gluten as an enemy and in its effort to destroy the enemy it also destroys the small intestine by damaging the villi which help you absorb your food. It is an autoimmune disease and it can only be treated (not cured) by never eating gluten again. For more information

Now to test for Coeliac Disease you must have been eating gluten for at least 6 weeks prior, as the blood test looks for Antibodies IgA or IgGG. By eating gluten if you do have CD these antibodies will be in your blood at a high enough concentration for the test to be positive. I have been rubbish with gluten for years, eating large amounts (by which I mean more than the equivalent of two slices of bread a day) I get horrendous stomach cramps and diarrhoea. I feel as if I have been poisoned, after eating gluten. I have been tested previously for CD but it has always been negative. Doctors have always told me that it is IBS that causes my stomach pain and diarrhoea. No one has listened to me when I have told them the correlation between eating gluten and being ill. At various points in my life the symptoms have got so bad I have gone gluten-free and you guessed it the symptoms went away. So over Christmas knowing I would be asking for a blood test, I knew I would have to eat gluten.

I love mince pies, french bread, Christmas cake, every Christmas goodie seems to contain gluten and I indulged …..a lot. I have never in my life been as ill as I have this year over Christmas with stomach pain, diarrhoea, wind, bloating etc. In fact two days out of 14 I didn’t eat at all as I hurt from the back of my mouth downwards. I got through my IBS medication at a rate of knots. It got to last Sunday and I had to admit defeat, I just couldn’t do this anymore. Without over exaggerating I felt like I was dying, my joint pain was getting extreme, muscle pain the same, my shit did quite frankly stink as did my copious amounts of wind. When you fart and your husband runs away with his eyes watering you know there is a problem. When the dogs also leave the room looking at you with disgust, it’s time to say enough is enough.


So I have been 2 days gluten-free, my stomach has settled down. It’s still what I call a bit prickly but I can no longer feel every inch of my intestine. My stomach if it’s been  through a bad patch will take a few days to settle but it is bouncing back much more quickly than it normally would. The levels of wind have dramatically improved to be almost non-existent, much to my husband and dogs delight. The bloating has also gone, I wish I had measured myself before I started going gluten-free because I swear it’s inches smaller (but I am big anyway). My joint pain severity has also decreased, they no longer feel like they are burning. I know its way too soon to put all this down to going gluten-free, it maybe that everything felt awful because my stomach was so bad and I felt thoroughly miserable. I know when my head pain is bad, I also feel horribly unwell.

Due to the time of year I can’t get a doctor’s appointment until next week (which I actually thought was good) where I will ask if I can have the Coeliac disease blood test. I won’t have been eating gluten so the test may come back negative but I just can’t go through another two weeks, like that again. For the moment I will be gluten-free.

For those of you with Ehlers Danlos Syndrome (EDS) it maybe worth having a look at this study which shows that people with CD have a higher risk of also having EDS

Happy New Year from Mr & Mrs Myasthenia Kid

Happy New Year from Mr & Mrs Myasthenia Kid

stronger together

I hate writing blog posts when hubby as home as I never seem to get a minutes peace to do it and it’s even worse when he’s home poorly because all my energy is focused on him. Thankfully he seems to have turned a corner and is doing much better, managing to eat for the first time in a couple of days.


So this blog post will be a quick one so that everyone is caught up with everything that has been going on in the last 7 days.


We celebrated 16 years of marriage on Sunday, something we are both proud of having seen many of our friends marriages fall by the wayside over that 16 year period. Things haven’t been easy for us but we know that we are stronger together and can’t see any point in life without each other. Chronic illness is hard on relationships but somehow we have made it work and we are proud of that.


We marked our anniversary by going out with the dogs. It was my first trip up to Woodbury Common with the dogs since getting my power trike and new wheelchair. It almost didn’t happen when I realised halfway there that I had forgotten to bring the keys to switch the power trike on with me. Hubby turned the car around and we went back and got the keys. The next problem was the bike light. I hadn’t thought to attach it previously and now I was having to try to do it in complete darkness. We went out at 04:30am so there wasn’t even the dawn to help us. In the end I decided to just hold the bike light in my mouth as there was no way I wasn’t going to get out on the trike.


It was brilliant and the dogs took to it like ducks to water, running along beside me like they’d done it all their lives. Frankie loved being able to trot along behind me and the girls enjoyed running in between hubby and I. Due to the bike light issue there wasn’t much conversation but just having the freedom to get out and move under my own steam was enough. I was knackered afterwards and could barely move my arms for a few hours afterwards. It is amazing how good it feels to be tired because you’ve done something you wanted to do rather than just being exhausted by chronic illness.


I also managed to forget to take my mobile phone, which on the way home from Woodbury Common I was convinced I had managed to lose it their. Despite hubby telling me I had left it at the house, he should know he saw it twice having gone back in, to collect the keys. So there are no photo’s or video but I doubt they would have been any good due to the fact it was pitch black other than the light from hubby’s torch and the bike light. So despite it being a tiny bit of a disaster, forgotten keys, bike light not attached we did enjoy ourselves and it was a rare treat for me to get out of the house for something other than a medical appointment.


So far (touch wood, luckily my foot is touching the wooden coffee table whilst I type) I haven’t succumbed to the illness hubby has been suffering with, although in the last two days I have slept more than I have in months. I have gone back to bed each afternoon and gone straight to sleep. Each evening I have been asleep a little after 17:00. So I am obviously not right either. I am just lucky not to have had the projectile vomiting and diarrhoea that hubby has suffered with.


Unfortunately I had to cancel my neurology appointment that I was supposed to attend today (28th Sept) but hubby was not well enough to drive me for over an hour and I am sure that the hospital would have preferred that he would have stayed away. Ringing the appointments line to cancel though, I was made to feel that I should make an attempt to get there at all costs, even if that meant turning up with a husband who had sickness and diarrhoea. This is obviously in  direct contradiction to what all hospitals say to visitors / out patients which is  to stay away if you have S&D, due to the fact it’s highly contagious and many patients have suppressed immune systems. I was told that all the appointments for the next 6 weeks were booked and they would have to contact me when the next appointment became available. I am gutted obviously as I really needed to attend the appointment but other than grow a set of wings I had no way of getting there. I no longer hold a driving licence, so couldn’t drive and none of my family could help as they also had appointments that day. If I could have got there I would.


So now I have to wait for another appointment and just hope that they don’t attempt to discharge me for not attending. They are so oversubscribed with demand for appointments they have been using quite underhand tactics to tackle their waiting lists.
I do have some good news though, I have an appointment through for the National Ehlers Danlos Unit at the end of November. Which is much sooner than I thought it would be. I thought I would be waiting until after Christmas to get an appointment. At last something seems to have gone right.

As per usual

I know I am forever writing that things have been crazy here but the last week has been a 20 on a scale of one to ten. So stressful that it has completely drained me of all energy and sent me spiralling into a massive pain flare. I feel like I have aged twenty years in the space of a few days and only now have my adrenaline levels returned to normal. As per usual nothing has been as straightforward as it could have been.


Last Thursday’s blog post announced with much excitement that I had found a second-hand power trike attachment and wheelchair. It arrived safely on Friday morning but I am jumping ahead of myself. Thursday Jay and I were beside ourselves with excitement. Due to his shift pattern that day, we had been able to spend a couple of hours together chatting about the delivery of the wheelchair etc. We were avidly waiting to hear from Emmey to find out when it had been picked up. Jay went off to work at 9:30am without a care in the world, only for everything to come crashing down around us just ten minutes later.


The home phone rang and I was concerned when I read caller display and it said Jay mobile. I answered the phone and in one small sentence I went from giddy with excitement to despair “Baby the cars dead” he said. I asked him to explain what he meant as I couldn’t quite comprehend what he had just said. He explained that as he had driven to work there had been a loud bang, the steering had become almost impossible and every light on the dashboard had come on. He had managed to limp it into the garage next to where he works and they had told him it sounded like complete electrical failure and that it was game over for the car. The universe was playing one of its perverse games which means for every good thing that happens there has to be a bad thing.


Immediately after coming off the phone I threw up in the kitchen sink. I couldn’t even cry with frustration, all I wanted to do was be sick. I rang my mum to tell her what had just happened. She managed as always to talk me down from the ledge and give me practical solutions. As soon as I got off the phone I started googling second-hand cars and found one that just seemed too good to be true with my first search. The only problem was, it was an hour down the road where my parents lived. I rang my mum asking if it would be possible for them to go and check it out. I didn’t bother telling Jamie any of this as I knew what a state he would be in if I was ready to curl up in a ball in the corner. He was having to work knowing we had no car, no way for him to get home (other than walking or getting a taxi) and no way to get the dogs out on their walk.


My dad rang me about 45 minutes later to tell me that the car was good and he asked me what I wanted to do. I told him we didn’t have a choice and could he buy it for me. We would just have to find the money for it somehow. It was scary but isn’t being a grown up scary anyway? I was starting to feel less sick but I was stressed out to the max.


I did however have some good news in the meantime as Emmey had sent me a picture of the wheelchair being collected by the courier company. I now knew that this was becoming a reality and that it would be with us the next day. I felt so torn I was devastated about the car as it was an expense we hadn’t been expecting but I was also deliriously happy about the trike etc.


Dad rang me back with all the car details and told me as long as I had the insurance and tax in place the car could be fixed up the following day. I couldn’t believe it. In the past when we have bought cars we have always had to wait a week between paying the deposit and picking the car up. With everything online these days insurance and car tax can all be done with the click of a few keys, meaning no wait times when buying a car. This also meant that we wouldn’t be without transport for too long.


I then messaged a good friend who worked nights if he could help Jay take the dogs out the following morning at silly o’clock. He did one better and allowed us to borrow his car meaning that dog walking was no longer an issue. The babies would get a walk on Woodbury common and we wouldn’t have to face the torture of attempting to lead walk them. Something Jay would have to do on his own as I am just not well enough to do this.


I then rang Jamie to tell him the good news and that he would need to take the following day off work so that he could pick the car up. He was over the moon. I sent him the link to the car so that he could check it out. The problem was that we were both so stressed we really couldn’t take everything in. We had got to the point of overload after the previous weeks long drawn out process of buying the wheelchair and power trike attachment.


Friday morning we were both up and dressed incredibly early as we had both barely slept the night before. Jay was already stressed out about driving the new car as he doesn’t do change very well. I was stressed out about the wheelchair and trike being damaged in transit. At 9:30am I checked the couriers website to see where it was and if it was out for delivery. I was shocked to see that on three occasions it had been marked as damaged. There was no explanation as to what the actual damage was, again as had been my reaction the day before I felt sick. What the hell had they done to it whilst it had been in their care. I was beside myself, what could the damage be?


At around 10:20 am the courier arrived with the wheelchair and power trike. I told him that I wouldn’t sign for anything until I had checked everything over, explaining that on his company’s website it was stating it was damaged. It was wrapped extremely well (thank you Emmey) and there was no damage. It wasn’t until we had taken all the packaging off that the driver pipped up “ Oh it’s company policy to mark consignments as damaged if they aren’t in a cardboard box”. Even if he had told me this before hand I would have still checked everything over before signing for it. Thankfully the driver was accommodating and even helped us remove the packaging. As the courier had arrived so had my dad, to drive Jamie to the garage to pick up the new (second-hand) car. Dad was impressed with the wheelchair and the trike attachment. So was I when I finally got to check the wheelchair out, it is so much more comfortable than my previous chair and much more solid. I don’t feel like it will fall apart at any moment which is how I felt with my old one.


Dad and Jay set off for Plymouth and I had a few hours to rest before I got my hair highlighted something that had been planned about three weeks before we found out about the wheelchair and power trike. It was the first time since February that I had been well enough to get it done. Before the hairdresser came over (I can’t use a salon as I find the whole process, noise, smell and lights over stimulating causing me to collapse) I was exhausted.


Since Friday I have had three nights of insomnia and one night of proper sleep. It was only on Monday that Jay and I finally relaxed, we had been so tense and tired that we were just snapping at each other. We couldn’t even have a normal conversation without biting each other’s heads off which is very unusual for us. I think we were both exhausted and terrified at what was going to go wrong next. You see we both come from families where if something is going to go wrong it will happen to us. So we were constantly waiting for things to implode.


Sunday we had tried to sort out the power trike and let me have a little go on it but we couldn’t get it to work. So again that sent us into a panic thinking that maybe it had been damaged in transit or that we had bought a lemon. We decided to bring the battery in and give it a good charge as when I had switched the trike on no lights on the power indicator came up. The following day when we were less tired and had no other jobs that needed our immediate attention we gave it another go. We checked all the connections and found that several of the connections were loose. With those sorted the lights illuminated on the power indicator and it was all systems go.


However there was yet another problem the handle bars and the front wheel were not lining up. We think it had possibly been adjusted by the seller for ease of transportation. As Jay and I are not bike people nor terribly technically minded we were at a loss. When the handle bars were straight the front wheel was pointing at right angles to the bike. We did manage to adjust the handlebars but the front wheel wasn’t turning properly. I did manage to take it for a spin around the street but due to the fact it wasn’t turning properly and I nearly fell out on numerous occasions we didn’t take any photographs or video. Once the wheel is fixed (thanks to a friend who is popping over Sunday, we hope he will be able to sort it) it should be all systems go.


The battery is also not fully charging so I have had to buy a new battery and they don’t come cheap. This was all stuff that we were expecting and with the money raised by friends and family could afford. So despite a few first time user technical hitches we are confident we will get it up and running smoothly very soon. It’s going to take a bit of getting used to as 4 mph feels like warp speed! Also because I have never used a motorbike I am finding the hand throttle very confusing, I keep making it go faster when I want to slow down. It was hilarious as Jay was running alongside me telling me to hit the brakes. It must’ve looked like a parent with a child on their first bike! We are planning to get a dog sitter in to look after the mutts so that we can go out for a few hours so that I can get used to using the trike.


So we are both exhausted from the stress of it all. I am in the midst of a massive pain flare up with my left hip attempting to sublux (partially dislocate) at every opportunity. Things have been hectic here as per usual.


What I am really thinking

I read an article in The “Why I won’t apologize for having fun while chronically ill“why I won’t apologize for having fun while chronically ill”“  last week and it really struck a chord with me. It is how those who are chronically sick are judged by those who are lucky enough to have good health and lead normal lives when they post a picture of themselves on social media enjoying themselves. It was a brilliant piece and I had never seen such powerful words before describing what it’s like when you know every movement you make is being watched and judged. Granted I have been judged by those in the chronically sick world. I have had snide comments on my blog when I have posted about having a party “I wouldn’t be well enough to do that” and that kind of thing. I am going to be brutally honest and say it cuts both ways.


I will let you into a secret about what I am really thinking when I see your posts on social media. Out enjoying yourself spending time with friends and family. Living a normal life, uninterrupted by chronic illness or pain. Some days it is more than I can bear to see your happy smiling faces. Sometimes I have to just take a deep breath and switch off the computer before I go into a rant of epic proportions, using all block capital letters “you don’t realise how fucking lucky you are”. My last days, your everyday normal days, were wasted back in 2007. I wish I had known then what I know now. I want to tell you to stop moaning about your life and enjoy it.


I want to tell you about the horrific double standards there are between our worlds. You can post on social media that you are dying from a cold and sore throat. And yes I do agree they can make you feel pretty awful but I am pretty sure those things are temporary. When you post about it, I chuckle to myself, whilst my fingers itch to post something passive aggressive in response. Don’t get me wrong I do have sympathy for people, in fact since I got sick I have more sympathy. I worry more about people, people who I shouldn’t waste the energy on because clearly they no longer worry about me. If I post about being sick I can almost hear the eye rolls as I press send. The comments that you make to one another that I am attention seeking that couldn’t be any further from the truth if you tried. Sometimes I just need to vent, after 9 years of crap I think I am allowed.


Many years ago now, someone who I had believed was a friend messaged me and told me that unless I stopped moaning she would unfriend me. I made the decision for her and deleted / blocked her on reading that message. You see I am supposed to put up and shut up whilst I struggle with daily life. However you are allowed to post daily on how awful you feel when you’ve come down with a cold/ virus / temporary bout of ill-health. I don’t want you to stop posting, I just want the same courtesy extended to me. To end the double standard.


When I see you organising nights out, get togethers I do feel a stab of jealousy that you are able to do that. I also feel sad that nobody invites me anymore. I couldn’t go even if you did invite me, I am simply not well enough but the invitation would mean you hadn’t forgotten about me or written me off. I also feel angry that nobody seems to give me a second thought. It is out of sight out of mind. I have 292 friends on social media but see only one on a regular basis and I have another two friends that I see less regularly. Many of those on my friends list live in the same town but I haven’t seen them since the day I left work on the  31st May 2008. I look at you organising your nights out and think you are one accident or chronic illness away from losing all these people who you think are your friends. I then feel sorry for you because it will mean that you will experience the pain and social isolation I have. I wouldn’t want anyone else to have to go through that but they will.


This isn’t a poor me post, quite the contrary, although I do get accused of being “negative”. I know I can be a difficult bugger, be crap at keeping in contact with people. Even with good friends I am really rubbish at staying in regular contact with. It isn’t because I can’t be bothered, a lot of the time it is because I really just don’t feel I have anything to say. It’s awkward when there is nothing going on in your life other than hospital visits and ill-health. I don’t have a work life, social life etc on which I can draw upon to talk about. Once you lose those your world really shrinks and topics for conversations dry up.  So I tend to feel that there is nothing I have to contribute, so I retreat within myself.


When I see your photo’s come up in my news feed quite often I feel envious. I would love to be doing the things that you do but my body won’t let me. All you worry about in those photos are if others will think you are fat or if they like your clothes / hair. You will never know what it’s like to be judged as in “how sick you really are” by someone on your friends list looking at a photo. I rarely take photos when I am sick (sicker than normal) or if I am in hospital. I am usually too sick to be able to even think about taking a photo on those occasions. I have taken photos on my last hospital visit to brighten up my blog. Thankfully on those occasions I have had my husband there to help me and he has taken them for me.


I wish when I posted a picture on social media that all I had to think about was if I looked ok. I worry when I post that I don’t look sick enough or that maybe someone will think that because I am out of the house I am faking my illness. I have had people comment on my pictures, even the ones when I look like an extra from The Walking Dead “I wish I looked that good when I am sick”. Anyone who really knows me outside the realms of social media, knows I look sick in those photos, I do not look like I did before I became ill. I am drained by the constant need for proof some people demand. The double standards are horrific and exhausting. People will tell me not to worry about what other people think but really I don’t know anyone who wouldn’t worry. Even if I was well I would be worrying about what other people think. It’s very easy to take the high moral ground and say “I don’t care what other people think, I am just going to live my life” but it is built into human nature (I am sure) that we are so preoccupied with outward appearances.


I coo over your baby photos and pictures of your pets. I love seeing the kids enjoying themselves and the animals being thoroughly spoilt. I would have to be some kind of Ebenezer Scrooge not to. I love it when you get the job, announce the baby, celebrate anniversaries and travel to far-flung places. I also feel your loss when you post about bereavement. My heart aches when I read your posts about the loss of a loved one or beloved pet. I am there with you because I live my life through you. When you have such a limited world your online friends and acquaintances become incredibly important. I am so proud of the friend who is training to become a teacher, in a complete change of career. I am so happy that one of my members of staff from when I worked is now living his dream out in San Francisco. I am over the moon that the shy quiet girl who I had an incredible bond with at work is now training to be a nurse. I am in awe of those raising a family single-handedly. There are just so many of you who do not realise lift me up on a regular basis. I may not tell you but I am amazed at your courage to grab life by the balls and live it.


Somedays I may feel sad and be jealous of the lives you have. You may drive me slightly around the bend with your whingeing. I may want to strangle you on occasion due to yet another cryptic passive aggressive post but arguments on Facebook are a hilarious spectator sport. So what I am really thinking is…………………………………… Well it changes on any given day.


P.S Happy 1st Birthday to my nephew Elijah xxxx


The second Caffeine Infusion

Three weeks ago (on Friday) I made the hours trek to hospital to have my second caffeine infusion. I had rung the consultant’s secretary on the Tuesday of that week and received a phone call the following day asking if I could get there for Thursday. Unfortunately we needed to arrange childcare, well really a dog sitter as we don’t have kids. Luckily the registrar who I see on behalf of the consultant has a dog of his own who doesn’t like being left so he doesn’t have a hissy fit when I say 24 hours notice isn’t enough. Thankfully I have good friends who are able to step into the breech and my parents have told me, that now dad is retired he is more than happy to ferry me to and from these appointments.


Dog sitter organised (thank you Imogen) I could make the Friday appointment at the hospital at it’s Ambulatory care ward. As I grew up in this town many of my oldest friends live there, I don’t often get a chance to catch up with them as since I have got sick I have become a very poor traveller. Just ten minutes in the car is enough to make me travel sick and I seem to suffer with excessive levels of fatigue for days after a trip of more than 20 minutes. I had posted on my own social media page that I would be travelling to my hometown and one of my oldest, closest friends said she would meet me at the hospital. She would sit with me whilst I had the infusion and we could have a catch up. Hardly Costa Coffee but when you are chronically sick you will take any opportunity presented to you.


I get very anxious with any medical appointment. Until I got sick back in 2007 medical appointments other than smear tests (pap smears) never bothered me at all. Now they fill me with dread as you never really know how you are going to be treated. With a normal routine appointment, including a gp’s appointment I can suffer nights of insomnia leading up to it. With just 48 hours notice my anxiety levels hit the roof, I barely slept and kept going over worst case scenarios in my head. I have gone to appointments in the past only to have the rug pulled out from underneath me during it. I have been left feeling disbelieved and disrespected by medical professionals because they were out of their depth, they didn’t understand so therefore I must be making the whole thing up. Then once a psychological label has been applied to you it is very difficult to get any new medical professionals to believe what you tell them, even when it is backed up with test results. Even though my new doctors had diagnosed a CSF Leak I was still terrified that they would turn around and take that diagnosis away without warning.


The only thing that kept me going was the thought that I would see my friend Sharon, who I hadn’t seen properly for around 18 years. We keep in regular contact via text messages and Facebook. I might even go as far as saying I was almost looking forward to my trip to hospital for the first time in my life.


The appointment was for midday and we got there with time to spare. We eventually managed to find Ambulatory Care, through the maze of corridors. The staff were waiting for us and many were extremely curious as to why I was having a Caffeine Infusion, for what they thought was a simple headache. I wish it was a simple headache as perhaps it might have gone away by now. It did annoy me that they diminished my condition to that of a headache, now I know headaches can be awful. Those of you who suffer from migraines will probably feel the same, it’s not a headache however unless you have suffered from a migraine or a cerebrospinal fluid leak you have no understanding of what it’s like you can hazard a guess. In the same way I can guess how painful a broken leg is but having never had one (touch wood that I haven’t just jinxed myself) I can only imagine.


The curiosity from the medical staff was due for two reasons firstly caffeine infusions don’t happen very often, so the majority of them had never met a patient who has had one and secondly standard advice for headaches is to avoid caffeine to see if that is what is triggering them. As usual I was a medical oddity but over the last nine years it is something I have become accustom to.


Most people with EDS will tell you how difficult it is for medical staff to get a cannula into them. I was asked never to attend blood donation sessions after the highly experienced phlebotomist being unable to draw blood after trying for 45 minutes. Now if this lady spends all day every day sticking needles into people and she can’t do it you know that you have what is termed in medical circles as “shitty veins”. So I can go from jovial charmer to bitch from hell within 60 seconds if medical staff refuse to listen to me when I tell them I have awful veins and where the best vein is. I don’t understand why if a patient is telling you something you would choose to ignore them. I am actually trying to make your job easier. So you can guess what happened, the student nurse and the health care assistant decided they knew better than me and ignored my advice.


I am now the proud owner of this bruise which is now black after two weeks, at three week’s it is still quite bad but now more yellow.




I had strongly put across my instructions to the student nurse that she could have one go and that she wasn’t to dig around inside my arm because it hurts. She looked totally freaked out but decided she knew better than me and started in the crook of my left arm. An area that no blood has been able to be drawn from for about ten years. At the same time as the nurse attempting to insert a cannula Sharon arrived, which eased the tension well mine at least. The medical staff were a little surprised that I had a friend join hubby and I but it doesn’t say anywhere that I can’t have more than one person with me. Despite the cramped bay of six large reclining chairs that look a lot like the ones you have at the dentist.


The health care assistant decided she would go next on my arm and she is the one that blew my vein. She was the one who got my vein the month previously after another nurse failed four times to hit the jackpot. Again before she started I told her she would be unlikely to get anything from that location and that the back of my hands were better. As my words of wisdom were being ignored I started to chat to Sharon.


When the second attempt of inserting a cannula was aborted my arm immediately began to bruise a nice bright blue. At the same time my Registrar came in and we managed to have a catch up, he admitted that currently he didn’t know the status of me getting an epidural blood patch as his boss was away. However the caffeine infusions could be used as a stop-gap as long as they helped. The occipital nerve block injections couldn’t be done for a while yet which was a shame as they had started to wear off and the pain was starting to come back.


After hearing of the two unsuccessful attempts to get a cannula in the registrar decided to have a go. I know that my veins are terrible and I don’t mind how many attempts they have my golden rule is don’t dig around if it’s not working. One phlebotomist told me my veins were like trying to stick a needle into an elastic band, they just move out-of-the-way. The registrar was happy to have a go at the back of my hand. Whilst he was looking at it he said “I wonder where that vein goes?” I replied as quick as a flash “To the heart” which had the bay in stitches. I knew the doctor meant he needed to work out where and in which direction it went so he knew which way to get the cannula in. A little light-hearted humour is needed sometimes.


I was surprised how smoothly that this was all going I had anticipated that I would be left hanging around for ages and had even told Jay that should the infusion not had been started by 2pm I was leaving. I can get a bit stroppy where hospitals are involved. This time during the infusion I was wired up to a heart monitor, which apparently should have also happened on the ward when I had my first infusion. There was though very little point in having it on as due to the amount of tachycardia I was having the healthcare assistant simply switched it off within 15 minutes of the infusion being started. A little concerning when caffeine can play around with the rhythms of the heart.


My friend Sharon spent the entire time watching the monitor as she couldn’t believe what my heart was doing. I have no idea why the tachycardia was so bad jumping from 70bpm to over 160bpm with me just sitting forward. I am guessing that my heart does this all the time and that I am just unaware of it doing this as I am not hooked up to a monitor 24/7. Sharon told me that although I had said about my heart being crazy she really needed to see it to truly believe it. My heart never sits in a rhythm and jumps all over the place but no one that has seen this happen in the medical profession has been concerned. However if it weren’t for Sharon’s eagle-eyed viewing of the monitor I wouldn’t have discovered that my heart was also having significant episodes of bradycardia (going to slow). I have caught my heart on the odd occasion going about 50bpm but it’s happened twice in 9 years. I just thought it was a one-off and that it was just part of my crazy heart rate. Sharon asked me if I was feeling alright and I wasn’t I had a strong urge to yawn and had chest pain. She pointed to the monitor and it was reading 41bpm. I am 5ft 8inches tall and heavy (I have put on weight since the CSF leak was diagnosed purely through boredom of not being able to do anything much) I am not an athlete so I shouldn’t be experiencing a heart rate that low. Then within seconds it bounced back up to 140bpm.


I brushed it off at the time as I didn’t want to cause a fuss but the longer I thought about it the more concerned I got. I emailed my PoTs consultant and told him my concerns, that I am not just experiencing Tachycardia but Bradycardia also and that doesn’t fit with a diagnosis that is purely PoTs.


I soon forgot all about my heart rate when my husband managed to fall off one of the reclining chairs. I can’t write it well enough to explain how funny it was. One minute he was standing playing a game on his phone the next minute he appeared to be doing a gymnastic routine, having misjudged where the seat was and having sat down on the bit you put your legs on. He slid down to the foot rest and somehow managed to jump to his feet. This was witnessed by everyone in the bay, for the first few seconds there was stunned silence and then Sharon and I fell about laughing. Thankfully he hadn’t hurt himself only his pride. The staff were quick to ask him if he was ok, which he was and the whole bay was roaring with laughter. It was the fact that when he jumped to his feet he looked like a gymnast finishing a floor routine. It did make for a lasting impression for Sharon as this was the first time she had properly met him.


Initially after this infusion I wasn’t headache free, all the way home every 10-15 mins I was getting sharp stabbing pains in the top of my head. The next day I woke up with head pain and it made me feel so down hearted. I felt like it hadn’t worked and that there was now nothing that could help me. It wasn’t until the last 7 days that I have appreciated how much the infusion had taken the edge off as the head pain has come back. It has been so bad at times it has completely floored me and I have been left unable to do anything much but lie down and feel sorry for myself. I wish I could cry about it and let some of this pent-up emotion out but all I feel is numb. I just currently feel like there is no end in sight.
This week I shall be ringing my consultant’s secretary and attempting to book myself in for another infusion as it will have been a month a week Friday since the last one. I am hoping that they may also do the occipital nerve block at the same time although the registrar did say that this would be unlikely to happen. I can live in hope.

The things you do for love

So last week was crazy busy, despite Jay and stating we were going to have a lazy week whilst he was on holiday.


As I wrote last week I had a surprise visit to hospital on the Friday for a caffeine infusion which I will write about more next week as the star of this week’s blog post has to be my husband Jay.


Back in May 2016 I set up a gofundme page to raise money to buy a new wheelchair and a power trike attachment so I could go off road and go out with my dogs on Woodbury Common, something I have been unable to do since 2008. As hubby and I were chatting one day trying to think up ways we could raise money, as like most people we don’t have a spare £5,000 lying around, I suggested that he should get his back waxed. He agreed immediately, now this is the man that needed gas and air for his travel vaccinations, who screamed the place down many years ago when he had his legs waxed for charity, so I was a little shocked when he said yes.


Hubby is hairy and it has never bothered me. If you had asked me before we met if I liked hairy men I would have said no. To be honest the only time his hair has bothered me is when it’s left all over the shower tray every morning looking like we have showered a black Labrador. It wasn’t until I saw the first video clip I realised how hairy he is, I suppose over 20 years I have just got used to it.




Within a few days hubby had it all organised and the sponsorship money was flooding in. Through doing this he has raised over £1100 I am so proud of him not just because of how much money he has raised but the pain he went through doing it.


Imogen, a very dear friend of ours videoed the back waxing for us. Unfortunately the complete version of the video is only available on my The Myasthenia Kid Facebook Page however we have managed to get the following videos onto YouTube. I also need to say a very big thank you to Abbie Wilson who did the back waxing in her own time and free of charge. That was so very generous of you Abbie and we really appreciate it. I need to warn you that the language in the video’s is a little fruity so it’s probably best you watch it with the sound down whilst children are present.

I just need to point out we are not a charity but a gofundme campaign. Apologies for my husband getting it wrong, I think the nerves kicked in.



It’s not too late to donate, we have set ourselves the challenge of a year to raise the money. If you would like to donate please use this link gofundme .

The things you do for love and a decent wheelchair, what next?

He has told me skydiving and abseiling are definitely out.