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 -https://celiac.org/celiac-disease/understanding-celiac-disease-2/what-is-celiac-disease/

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 http://www.dldjournalonline.com/article/S1590-8658(16)30436-4/abstract

Happy New Year from Mr & Mrs Myasthenia Kid.

This PAIN that you hold is yours

“This PAIN that you hold is yours. There is not a single PAIN quite like it. Nobody else on God's green earth can feel this PAIN, or have the indescribable feeling of pride you will have when you overcome it. This PAIN is not your curse ; This PAIN is your PRIVILEGE” Arnold Schwarzenegger

It's funny that since getting chronically sick nothing can quite set me off on an epic rant than a stupid inspirational Facebook quote. I probably sound like Mr Angry and I can assure you I am not. I did have a quick temper when I was younger but I have mellowed considerably with age (as I think we all do). I also don’t sit looking at things on social media to find things that annoy me. Of course I could be accused of taking the quote out of context, when Arnie said these words he was referring to the pain felt when you have given your muscles a bloody good workout.

However what do you do when it is posted out of context, no quote attribution, just a meme posted on someone's feed? Without looking it up on the almighty Google to find the author, how are you supposed to take it? Does the poster mean all pain is good? Because I know many of you like me would beg to differ and that’s the problem when these things are displayed without context. What is inspirational to some could be considered condescending / patronising / thoughtless (please delete as applicable) to others.

I didn’t turn into the Facebook police on seeing this and tear the poster a new arsehole. Which if I am honest, depending on the day I may have done. I am in a zen like phase at the moment probably through pain, insomnia and exhaustion where I am not going with a gut reaction because I know I am probably not thinking rationally. On a bad day I may have at the very least asked the poster to explain the logic behind the post or I may have gone nuclear and not very politely asked “What the f*ck do you mean?”

The quote “No pain, No gain” can also set me off. When Jane Fonda said this she was of course talking about exercise. However this is another quote that gets misused and gets attached to all sorts of endeavours. When I was well I probably bandied around this quote as well. It isn’t until your world changes by some event be it sickness, bereavement, redundancy that a well-meaning inspirational quote can suddenly impact you in a completely different way. It can seem despite the numerous followers or friends that the poster has, that this meme has been specifically aimed at you.

I am not for censorship in any form before I get accused as such I just want to offer a perspective from the other side. A while ago I completely lost my shit with a meme that was posted by one of my friends it said

“Good things come to those who go out and fucking earn it”.

An obvious swipe at those who claim benefits but what if through circumstance you have no choice and have to claim them? Should you be made to feel ashamed that you have been made redundant / become too sick to work / became a single parent  through no fault of your own? Such is the culture in this country to blame those who have to claim benefits for not trying hard enough to change the situation you find yourself in. I love it when you challenge people on a post like that and they respond “I didn’t mean you, I meant the scroungers”. What they fail to realise is there are many people like me, in fact we outnumber the so-called scroungers but a post like that tar’s us all with the same brush.

As for the quote that inspired this blog post, you may be surprised that I agree with some of it. It is true that “This PAIN that you hold is yours.”  Pain is subjective, no two people’s pain is the same, it can’t be shared, it is your burden alone to carry. Where Arnie is suggesting the pain from a good workout, where you have pushed yourself to extremes, I am simply referring to the pain of everyday existence. I would love to feel the pain from a good workout however I won’t deliberately increase my level of pain for a short-lived endorphin rush, only for the pain inflicted to last a week rather than the one or two days from exercise.

He is also right when he says “There is not a single PAIN quite like it.” It wasn’t until I started to learn about EDS (Ehlers Danlos Syndrome for the uninitiated) that I discovered that feeling pain every hour, everyday for as long as you can remember wasn’t normal. It completely blew my mind that other people, (non EDSer’s) didn’t live with constant pain. I had been convinced from an early age that I was a moaner and complained about pain unnecessarily. That I was weak and that everyone else bore their pain uncomplainingly. To suddenly find out that I wasn’t weak, that I had been dealing with off the chart back pain for years with little more than paracetamol made me feel vindicated. It wasn’t in my head, it was real. There is no pain quite like the EDS pain I get in my joints, in my abdomen or anywhere else in my body. My pain is different even to other to other people with EDS as we all experience pain in different ways. In some ways we are like snowflakes, no one of us experiences pain the same way.

”Nobody else on God's green earth can feel this PAIN…” again despite my rampant atheism, I agree with this statement. As I explained in the paragraph above, everyone experiences pain differently. Everyone has a different pain threshold. I am good or should I say I have a high pain threshold everywhere except my mouth. I seem to feel more pain at the dentist than I do with any other medical procedures performed elsewhere on my body. Due to the fact local anesthetics don’t work on me properly, they either don’t work well enough or I burn through them very quickly, it means the dentist surgery is a very painful and frightening place for me. Even the dentist just cleaning my teeth with cold air and water can make me scream. Yet stick a needle in the back of my head for an occipital nerve block and I will sit still without screaming my lungs out. Although I did swear a lot the first time it was done. I know of other EDSer’s that can have root canal work done without local anesthetic, they don’t bother with it because it doesn’t work. Just thinking about that makes me break out in a cold sweat and want to vomit. Even amongst EDSer’s people that are used to pain, our pain thresholds are vastly different.

Arnie and I part ways when it comes to the remainder of the quote - “or have the indescribable feeling of pride you will have when you overcome it. This PAIN is not your curse ; This PAIN is your PRIVILEGE”  I may on a rare occasion feel pride when I have pushed through the pain and have managed to enjoy myself. However in the back of my mind I know that despite the feeling that I have achieved something I will be left dealing with the consequences for possibly weeks or months afterwards. I don’t actively avoid causing myself pain, to do that I would have to wrap myself in bubble wrap and never leave my bed. I know some in the medical community believe that those suffering with EDS develop what they call avoidance behaviors. We limit our activities and because of limiting our movements we cause weaker joints, tendons, ligaments and muscles. I don’t know of any EDSer's that avoid doing anything, we may not do certain activities because we know it makes things worse but we don’t avoid things irrationally. I know that I can’t lift things, lifting causes me horrific back pain. I don’t walk outside the house, I use a wheelchair, I do this so a) I don’t pass out and cause myself a head injury, b) so that my hips or knees don’t dislocate, c) because walking causes me extreme back pain,  d) the effort used in walking exhausts me very quickly, and  e) my balance is shocking and I tend to fall over. It’s not an avoidance behaviour it is self-preservation.

Pain the type that EDSer's live with everyday at no point could be described as a privilege or a badge of honour. I would also beg to differ on Arnie’s description of pain not being a curse. Pain on the levels I and many others deal with on a daily basis is a curse. It stops normal life in its tracks. It causes bad temperedness, anger, loneliness, vulnerability and sometimes a sense of hopelessness. How do you describe to someone who has never suffered the levels of pain you endure that you can not look to the future because you do not have the energy to cope with this level of pain for the rest of your life. It’s not depression (although it is incredibly common in people who suffer from chronic pain) it’s a reality. When you have used every last ounce of your strength to fight to the end of another day, who could blame you for questioning if you could do this for another 40 years or more?

Pain from exercise is short-lived and self-inflicted. If you only train a couple of days a week you would have more pain-free days than those that you suffer the normal aches from exercise. If you stop exercising altogether (I am not advocating this as exercise is good for you) or adjusted your routine so you weren’t exercising quite so vigorously you wouldn’t suffer the pain that Arnie describes.

The person that posted this on social media would have been referring to his own fitness routine and not about the pain that someone suffers with when they have a chronic condition. Maybe I have become too over sensitive to things or perhaps it is because I see things differently. Obviously the impact of this was worse because I had no clue that this was someone else’s quote, so I didn’t know the context of it. It is a prime example of why author attribution is not just important to understand the context but also to give credit for the work otherwise it is just plain plagiarism.

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Trike Update

On Sunday our friend came over to look at the Trike and the Wheelchair. He has resolved the issues with the handlebars and brakes. It felt a million times better after he had fixed the issues. I wasn’t feeling such intense pressure in my back when trying to steer it anymore.

On Monday the new battery came so on Tuesday I was able to have another little go on it. What a difference the new battery made, so much more power. I am a lot more confident now and no longer need Jay running alongside me to keep me calm. He also had a go on it and was freaked out with how fast it could go.

So my first outing with the dogs is planned for Sunday. This will be the first time since 2008 I have been able to join them. I am very excited. I hope I sleep Sunday night. I will be going out whilst it is still dark so we may not be able to take picture. I do have lights for the Trike so I am hoping that they serve me well. Watch this space!

Miserable Cow

I was going to entitle this post “angry as f*ck” but it sounded a little aggressive, so I went with miserable cow instead. Miserable Cow fits me perfectly at the moment, I am angry all the time and along side the anger I am feeling miserable. Everything and everyone seems to get on my very last nerve. I feel like I am staring into a big black void and no one is getting how thoroughly hopeless and vulnerable I feel or maybe they are, I don’t know.

I seem to be right back at the beginning again when I first got sick. I carried an immense amount of anger then. At the time people pointed me towards the five stages of grief ( anger, denial, bargaining, depression and acceptance). I seemed to bounce between these feelings within the space of hours sometimes minutes but underneath it all there was a rage that was so difficult to express or explain to others. I seem to continually hover between denial ( so I sit up and ignore the crushing pain in my head), anger and depression.

It is immensely frustrating when you are suffering from constant pain and you can’t seem to get people to understand just how awful it is. I have been lucky I haven’t been as bad as I was when I had to call Jay (hubby) out of work as I had collapsed. However there have been a few days of late where it’s been pretty close. I have wanted to call him and ask him to come home, he would if I asked him to. The issue is that in the long run this would cause more problems that it would cure. He could get into trouble due to the amount of time he has had to take as emergency leave and then there is the issue of money. Does he take the time unpaid leaving us short of cash or does he take it as holiday using up a day’s leave, when he might need it at another time when I am worse than I am now? So not only do I have to struggle on with this alone I have to constantly consider the ramifications for Jay.

I know the stress on him must be reaching a tipping point. He is constantly exhausted balancing work, me, dogs, running the home and family. Due to the fact that we have no family where we live, we are isolated. There is no one to share the strain. Family you can call at the drop of a hat and ask for their help, as they tend to live nearby. It’s more difficult asking friends as they have their own families and work to worry about. I know if it was an emergency that I could count on them but there is something in me that feels I can’t ask. I don’t know if it’s me being stubborn and refusing to admit that things really are that bad or if I know from past experience that leaning too hard on people makes them disappear - after claiming all you need to do is ask. Back at the end of the summer I faced a similar situation where I needed help. Friends stepped up but others who claimed to be friends disappeared. No text messages, no contact they simply vanished and the same thing is happening again, with the same people.

So that is one source of my anger, I do everything I can to help my friends. I open up my home, they know that they can call me day or night, turn up on my doorstep and I have done that for years but when the shit hits the fan for me, it’s radio silence.

I have to admit pretty much everything is annoying my already frayed nerves. I never know from one day to the next what or who will receive an outburst from me. I don’t like it and try very hard not to lose it but when on social media if I see casual racism “immigrants” or factually incorrect posts, like blaming President Obama for 9/11, I can’t help myself. I try to just scroll past idiotic posts but sometimes the urge to point out the facts overwhelms me, It’s making me really popular as you can imagine. So now I am trying to lessen the time spent on social media for fear of reducing the circle of people I am in contact with even further.

I am not making excuses chronic pain changes you, most of the time I have it under control but since this suspected CSF leak started I have found I am no longer a nice person to be around. I bore myself moaning about how my head and neck hurt. I feel like I have nothing to contribute because my life is so boring with constantly lying down. I mean what do you talk about when people visit or text when all you have been lying down 24/7. I know my life is really no different from before but the pain is affecting me in so many ways, that I feel I have lost so much in such a short space of time that I am not coping with it well mentally.

You see it’s not just pain although the pain is the source of many of the other issues. I am not sleeping, roughly getting around 4 hours of unbroken sleep per night, not good for your mood. The back of my head and neck have become very sensitive so lying down is causing more pain but sitting up means it feels like my head will explode.

I also get the “how can you be in that much pain but still produce a blog post” the implication being that I am exaggerating the amount of pain I am in? Maybe I am being oversensitive? It is quite possible. The worse thing is that this question has come from people within the chronic illness community. They are a really judgemental lot, sad really. So for those of you that can’t understand how I produce a blog post and be in pain here is a breakdown of my day.

Every night at present I am waking up between midnight and 1am due to the pain at the back of my head. Some nights I lie in bed for a few hours waiting for hubby to naturally stir so that he gets as much sleep as possible. On occasion I have to wake him so he can help me get downstairs, either because my lower back is kicking off or I just can’t stand lying in bed anymore. Sometimes I just wake up, on those nights / early mornings I can get up for a bit before the pain starts to kick in. I never know exactly how long I have got pain-free it could be minutes or if I am lucky it’s an hour or so. Blog posts tend to get written in the middle of the night. This post was started at around 3am, lying on the sofa with the Chromebook propped on my legs so that I can see the screen, I am wearing sunglasses despite it being dark outside as the CSF leak has brought along it’s friend photophobia, so I can’t stand bright lights and that includes computer / phone screens / TV sets.

“Why do you still write if the pain is bad?” Ever heard of the distraction technique? It’s the kind of thing they teach you at pain management. I have never been to a pain management clinic as it is believed that I deal with my chronic pain well. I would beg to differ at the moment, I feel like I am drowning. As soon as the pain starts no matter how bad it is on a scale of one to ten, I know by the end of the day it will be at the top end of the scale. Oh and did I mention the double vision, nausea and tinnitus that goes with it or the altered sensation on the right side of my face?  So when I am able to write a blog post I seize the opportunity because it gives me the chance to vent my feelings. But I forgot it’s not allowed because I have to conform to the minority of the community's idea of what sick or in pain should be.

So not only am I being judged by the “norms” but I am also getting it from the chronically sick community. When you are in as much pain as I am in every day there are very little f*cks left to give. If you don’t like my blog posts, feel jealous that I write them or don’t feel I am sick enough, please just jog on. Because I am not prepared to play the game of constantly explaining myself or trying to justify my actions to you. As you can see a little bit of miserable cow came out then, sorry!

I have in, the what seems the vast amount of time spent flat on my back, found a hobby of sorts. I have been taking lots of pictures of my dogs and posting them on Instagram. When I am more with it I will devote a post to my recent pictures. In the meantime if you are on Instagram you can find me at racheljillmorrismcgee, my feed includes both pictures of me and the hounds. Below is a taster of the kind of pictures I post.