This is a temporary state

I am struggling physically struggling at the moment. Mentally other than being frustrated by my lack of ability to do much, I am ok. I am so exhausted all the time it can make putting a blog post together extremely difficult. I can’t really concentrate and my mind wanders. So today’s offering is going to be short and sweet. It’s frustrating as I have a few pieces I want to write but just can’t, my arms won’t work properly to be able to type and my speech is buggered after a while so the voice recognition software I have installed is making a real hash of things or maybe it’s just me?

 

I am still currently waiting for an appointment to see the neurologist. Last Friday I emailed my PoTs consultant, as I wanted him to know that the mestinon was resolving my ptosis (as it always has) and that I was only taking half a tablet, 30mg as I know what a number 60mg does to me. A whole tablet works wonders on my whole body, it relieves the weakness and brings me back to my normal levels. However 60mg comes with consequences due to the bowel adhesions I have riddling my abdomen. To be blunt it feels like I am being disemboweled when I take 60mg, I don’t have diarrhoea or sickness with it, it just feels like someone is trying to extract my intestines through my belly button for around 4 hours at a time, until the dose wears off. I explained this to my consultant, who ideally would like me to take 60mg up to 4 times a day. You can understand my reticence.

 

I received an email back an hour or so later, letting me know he had forwarded on my email to the neurologist that he has referred me to. He was obviously keen to let her know that the mestinon works. I had explained to him in the email that I had taken a bit of a nose dive since I had seen him. I then panicked and must’ve read and re-read the email that I wrote making sure there was nothing in there slagging off neurologists. Neurologists aren’t my favourite brand of medicine, I have been treated appallingly by some in the past, although I landed on my feet with my neurologists last year.

 

On Sunday morning I received an email from the neurologist, which surprised me. I hadn’t expected any kind of response from her at all. She wanted to know if I had my appointment through yet to see her and could I let her know as she would chase it up. She wanted to see me as soon as possible. She also asked me to ask my gp to prescribe a medication called propantheline, this would hopefully stop the awful cramps / pain I am getting when I take more than 30mg of mestinon. Both she and my PoTs consultant want me on 60mg four times a day as soon as possible. I have taken propantheline before and it has been effective. I am hoping that it works, if and when it is prescribed.

 

So really that is all that is happening at the moment, I am just trying to keep myself on an even keel, not push myself to do stuff and try to not get too frustrated when my body refuses to obey my commands. As my husband told me this week in one of his profound moments “this is a temporary state”.

 

Voting (endorsements) have started on the WEGO Health Awards, my blog is up for Best in Show. If you enjoy my blog and have 30 seconds spare please click on this link and vote for me

 

https://awards.wegohealth.com/nominees/5611

 

Many thanks.

Limbo

Currently I am in diagnostic limbo, awaiting tests to confirm or deny the diagnosis of Myasthenia Gravis (again). It is a deeply frustrating time, whilst I wait around for my first appointment, I am essentially in no man’s land. Technically until proven otherwise there is essentially nothing wrong with me yet those who know me, know that what is happening at the moment is beyond my normal levels of crap health.

 

The hoops have already been set for me to jump through. Although my consultant has written to my gp requesting that he / she prescribes mestinon for me to alleviate the worst of my symptoms. A drug that is also used for PoTs although in this community it’s known as pyridostigmine bromide as it raises standing blood pressure. You’d think I was asking for crack cocaine to be prescribed. On Tuesday evening at 17:30 I had a phone call from the doctor’s surgery asking me to book an appointment to see my gp as the gp “wanted to speak to me about pyridostigmine bromide”. Now I maybe way off base but to me this doesn’t sound good. I raised the possibility of MG with this dr back in May and was essentially ignored, now they want to discuss it? I have never had an issue with my consultant asking my gp to write a prescription and it necessitating an appointment to discuss it.

 

* * *

 

I started writing this post on Saturday morning and was too ill to continue writing it. As you can probably tell I was a little wound up by the prospect of having to do battle with another doctor so soon. I have been getting weaker over the last few days, finding my legs turning to jelly along with my arms. The stress of waiting to see the doctor yesterday didn’t help. By the time it came for me to leave the house, my ptosis was the worst it’s been in a while with it also affecting my mouth, causing me to drool.

 

 

As it turns out I got myself all worked up for nothing. The gp wanted to ensure my understanding about Myasthenia Gravis, Pyridostigmine Bromide and to work on a plan for if I was to get worse before seeing the Neurologist. That was a weight off my mind, I am so used to having to attend an appointment and be prepared for a fight when it comes to MG, I couldn’t see it going any other way. It was such a relief. I know that the neurology appointment is a different kettle of fish but for the time being I can relax a little and work on being a bit more stable. I have had 19 days of ptosis (I still can’t believe I coped with this for nine months solid in the past) but now at least I have the medication to stop it in its tracks.

 

I decided to hell with it all yesterday on my personal Facebook feed and posted the photo that is above (but a colour version). I explained that Myasthenia Gravis was back on the cards again and that this is what I had been dealing with on a daily basis for 18 days (at that point). I always try to distance my own page from my health as I have had some really awful stuff said to me before. I tend to keep most things limited to my blog or my Myasthenia Kid Facebook page, so that people can choose to follow or not. I shouldn’t have to do that but I do because society can’t cope with an illness that doesn’t get better. It doesn’t understand that you can have good days and bad days. I find it easier to self censor than face the bullshit that comes with being honest. Sad but true.

 

So this is going to be a very short post as my arms are shaking from using the chromebook and I feel like crap. I can’t lie. Mestinon has been started and the same results as ten years ago achieved, as in my ptosis resolves within 20-30 minutes, longer if I am really bad and the weakness in my limbs lessens.

 

I did have a wry smile yesterday when the gp added to my notes “Myasthenia Gravis” but then I have been here before. Still currently officially in limbo.

MG or Not MG that is the question…..

For a long time I have been pondering about changing the name of my blog. The Myasthenia Kid name seemed to have become pointless, I wasn’t having as much ptosis as I was in the early days and it had been many years since I had been brave enough to raise the subject of Myasthenia Gravis with my doctors. I had become used to the silent eye rolls that happened if the subject strayed anywhere near MG in a doctor’s presence. Basically I had been belittled or shamed  into silence and as my symptoms weren’t bothering me so why rock the boat, when it had taken me so bloody long to be taken seriously?

 

I saw my own gp earlier on in the month as I needed to get my blood and x-ray results, I had full-blown ptosis then. I raised the fact that no one knew why I had this and explained  it tended to happen when I was sicker than normal. She basically shrugged her shoulders and left it there. When you are faced with that kind of attitude when you bring up a distressing symptom it is soul-destroying. You can understand now why over the past 8/9 years I have chosen not to.

 

On Thursday last week I saw my PoTs consultant, hubby and I had been taking bets on if my ptosis would turn up at all before we left for the hospital. Anyone with fluctuating symptoms knows that rarely do they show up on a day that you need them to. Within an hour of getting up early on Thursday morning I knew it wasn’t a case of if but when. I felt absolutely dreadful, my heart was doing its slow beats, followed by rapid palpitation inducing beats. My head felt like it was swimming, my body just felt like it didn’t have the strength I needed to be able to get washed, dressed and out of the door. If I could have lain on my bed all day and just sobbed I would have preferred that to having to pretend I was well enough to get to my appointment. I couldn’t miss this one as it was my second official appointment with my hospital appointment. The first one being back in 2015 (which isn’t last year), I hadn’t been able to see him officially in 2016 at all due to developing a CSF Leak, although I had seen him unofficially as he always popped in when I was having my caffeine infusions.

 

I was really nervous about the appointment, it had been a long hard road to get to see him and I have never raised the subject of MG. I had never needed too and he had never seen me with full-blown ptosis. I was concerned that raising the issue now may impact on our patient / doctor relationship. It was a big risk, one I hadn’t taken in many years but what choice did I have when I hadn’t only been suffering from ptosis but breathing, swallowing and chewing issues.I have also had problems with being able to walk, where although I know my brain is telling my legs to move nothing happens. Everything except the breathing issues had always been written off as EDS before, once I got that diagnosis in 2011. There are reports of people with EDS who have ptosis but none of the photos I have seen accompanying the medical literature look like mine. They have the droopy eyelids, but they don’t have the eyebrow drop, side of the mouth drop or the pupil drift that I do.

 

I think it is pretty safe to say my consultant was pretty shocked when I took off my sunglasses when we got into his consulting room. I am extremely self-conscious about the way I look when I have ptosis. This stems back to when I had two people openly take the piss out of me when I sat in the doctor’s surgery many years ago and the crap I took off some people when I was at work, they thought they were hysterically funny to shout “eye, eye” etc whenever I was in the vicinity. When it is bad I tend to wear oversized sunglasses that hide both my eye and my eyebrow, so I don’t get the stares etc.

 

I gave my consultant a brief overview of what has been going on, how it’s not just ptosis and that other bits of me are refusing to work. I gave him a very high level summary of my history of ptosis and my treatment at the hands of the local hospital when all tests proved negative.However he like me agrees with the fact that the first Tensilon test was positive because my eye opened, unlike their view that whilst it opened it didn’t remain open long enough. He like me also felt I shouldn’t have had the second Tensilon test when my blood pressure was in the toilet (80/50) and I had a pulse of 54. I had already come close to passing out whilst waiting to be checked in. The Atropine I was given as part of the test made my heart rate soar to 140 bpm and yes my eye opened with the Atropine and not the Tensilon, which was given last. I was so unwell the day of that test I should have just been observed and given IV fluids.

 

Knowing that the “only” test (if you ignore the first Tensilon test) I have been positive on was the ice pack test, I had come prepared with a freezer block in a cool bag. I made my consultant touch it, so he could feel that it was cold and then with it wrapped in some kitchen towel I proceeded to apply it to my eye. As I was doing this we continued to chat, I then removed the block and showed him that the ptosis had resolved. He looked at me and said “That’s a positive indicator for MG”. I was quite impressed that he knew this. None of the non MG familiar doctors I have shown this to have been aware of this. I told him “ I know that, you know that, they know that but according to XXXXX hospital I don’t have MG” I explained to him that I had spoken to a woman who has designed the blood tests for MG. A prominent and world-renowned scientist in the field of MG, who told me that this was a sign that there was something wrong with the neuromuscular junction, for the ice pack test to have this effect.

 

 

Yet this was dismissed out of hand by two hospitals, one suggested that I was faking the ptosis for attention and my old gp surgery had suggested in a letter to the hospital that I was faking for financial gain. When I requested my medical records I doubt very much my old doctors practice had ever expected that letter to be copied and released to me. The financial gain supposedly was due to the fact I had asked them to fill in some financial documents to claim on my insurance to be able to pay my household bills whilst I was off work. If I had been poverty-stricken and lost my home would I have been more believable?

 

I had been treated so badly by so many doctors in the past, this had been a massive gamble and I explained this to my consultant. I believed my MG symptoms had been kept in check / been stable because I severely restricted what I did physically. I had been started to feel better than I had in years this April and had stepped up what I was doing as a result. Now this had all come crashing down around me, the MG like symptoms were back and it didn’t matter how much rest I had they weren’t going away. My consultant was very honest with me and told me “unofficially I think you have Myasthenia Gravis but I am not a neurologist and can’t give you that diagnosis” he then added “if you don’t have MG you have another neuromuscular condition and I am going to refer you to a movement disorder specialist.”

 

Any normal person would have been walking on air with this validation but I am afraid, I have been there, seen that and got the t-shirt. I am not hopeful of getting a diagnosis, hope leads to disappointment. As I said last week all I want is to know the reason why my body behaves the way that it does and if there is anything we can do about it. The slight glimmer of hope I have is that since 2009 doctors seem to be more open to the fact that there are some patients who are not positive for the Achr blood test. It seems to be more accepted now than when I was going through this the first time around. However I was always negative on the SFEMG’s which is considered the gold standard test. But this test relies on the competence of the person performing them, something which doesn’t seem to be considered very often.

 

I know that the waiting lists are long, especially for neurology and like last year, I may be refused on the first request. My consultant did tell me that he was asking for me to be seen asap but it could still be a wait. I replied without thinking “I know, it’s not life and death stuff” but he brought me back to earth with a bump and said “ well actually it could be if you go into an MG crisis”. To be honest currently that is what scares me the most, what if this happens and I don’t get the medical care I need because I don’t have the diagnosis? Especially if it happens here, where the care has been awful previously. I can’t fault the A&E staff when I presented with breathing issues in 2008 nor the ambulance staff that put on their blue lights when I was in and out of consciousness. It was the on call neurologist who overruled them all, telling  them I was having a panic attack and screamed at me when I couldn’t read the eye chart because of double vision. There have been a few avoidable deaths this year in the worldwide MG community,  where the signs of a MG crisis have been ignored and written off as a panic attacks and those have been when people have had a concrete diagnosis.

 

So I am back to the age-old question MG or not MG, at the moment who know

 

Wonderful surprise this morning, I have been nominated for a Best in Show Wego Award. Thank you to whomever it was that has nominated me, it means a lot! Unfortunately WordPress doesn’t seem to support the badge I got to put on my blog but Blogger does.

You can find me here

 

 

 

Ptosis……again

I wrote in my post entitled  “Hello darkness my old friend”  last month on how I was getting Ptosis pretty much on a regular basis. It’s not as bad as it was in 2007, when I had it for 9 months solid but the amount that it is occurring is bothering me. It’s happening to some extent on a daily basis and when it’s full blown it is causing me quite a lot of pain.

 

The pain is in my forehead and in the back of my eye (right side, the same side as the ptosis). I remember it being painful in 2007 but I don’t remember it being this painful and painkillers don’t help at all. For the last three days solid it’s been a constant battle to keep my eye open. Once the eye closes completely that is when the pain begins. It feels as if my forehead is being sworn in half with a blunt implement. Then the pain behind my eyeball starts. I remember having headaches with it in 2007 but it was always at the end of the day, never as soon as the ptosis started.

 

Last week I’d had a few days clear of ptosis (if you wondered it’s pronounced toe-sis, the P is silent) and hoped I was now seeing the back of it for a while. Only to be bitterly disappointed on Sunday when it appeared out of the blue again.

 

It stayed for the rest of the day having arrived at around 3pm by 18:30 my forehead felt as if it was being crushed between the jaws of a vice, so I gave up and went to bed.

 

Monday morning I woke up and it was gone, I breathed a sigh of relief however in just a few short hours, I could sense that my eyebrow and eyelid were starting to droop. I get a strange heavy feeling when it’s starting, once this happens it can be anything from 30 seconds to an hour before it drops completely. Quite often this heavy feeling will be accompanied by an altered sensation in my face, as if I have a dental anesthetic wearing off. Once the ptosis has come on fully the jangling nerve feeling goes but will come back when my eye opens. I managed to capture the photo below just before the ptosis kicked in. You can see that my eyebrow has already dropped and my left eyebrow is starting to arch in a vain attempt to pull the other eye open again.

 

Within three minutes of the photo above being taken my eyelid and eyebrow had completely dropped.

I took some medication to see if that would open my eye and resolve the ptosis, it took well over an hour for it to work and then only lasted for two hours. I ended up going to bed in the afternoon as the pain in my forehead was savage.

 

Out of all my various symptoms ptosis is the one that annoys me the most. You maybe reading this having never experienced Ptosis and thinking “what’s the big deal?” If that’s the case I would ask you to tape shut (with medical tape not sellotape!) your eye for day and see how you get on. How bruised are your arms after losing the sight in one eye? How easy is it to perform tasks where depth perception is required? (Do not drive if you decide to try this!) What I don’t have for you is a way to give you double vision in the eye that isn’t taped shut, nor the feeling that your forehead is being torn in half. When it’s bad like Sunday and Monday, I can’t watch the TV or use my computer. The only thing I can do is lie down, listen to the radio or audio books. The whole thing makes me feel very unwell, the medication I take to resolve it can also leave me feeling pretty rank.

At the moment I am having to avoid long periods of time using screens as this is a trigger, I have no idea why. I am also having to limit my physical activity levels as not only am I get ptosis but I am also getting very weak muscles, that will shake and refuse to move. Walking when bad can feel like I am having to throw my leg forward from the hip-joint. Its most bizarre. Thankfully though, this week I have an appointment with my consultant and for the first time with him and in years I am going to bring up Myasthenia Gravis (MG) again. It is always scary bringing this up after what I have been through before when all the tests were negative, yet there seems to be more acceptance these days that there are patients who are seronegative (show no antibodies). Maybe it will be better received this time? It’s the chance I have to take. Is it so wrong to want to know what is causing the ptosis and what can be done about it?

On a lighter note I submitted a photograph I had taken into a competition for a local magazines Facebook Banner. The winning photograph will be displayed on Devon Life’s banner throughout July. I have until 1st July to get as many votes / likes as possible. So if you are on Facebook just click on this link and it should take you right through to my photo Link Here

The photo is the one below, it’s called Woodbury Common by Rachel Morris-McGee. Then all you have to do is hit the like button! Many thanks x

Too Darn Hot

I’m just going to break rank and say it, something that us Brits are known to do which is to complain about the weather, here goes……..It’s too darn hot!

 

Now for those of you who experience really hot temperatures in the USA or Australia for example must be laughing your heads off, as our heat wave temperatures are nothing compared to yours. Most temperatures in the last 6 days have been above 30 degrees celsius (86 fahrenheit), this is a rare (ish) event in the UK with average June temperatures normally being around 21-24 degrees celsius (69.8-75.2 fahrenheit). It’s also all about what we are used to and we Brits are not used to this at all.

 

I have been suffering since last Thursday as my blood pressure decided the best thing to do when faced with this heat was crash. When I eventually bothered to measure it, the first three times my blood pressure monitor read error, which means it’s too low to read. When I did get a pressure (probably because I was getting stressed from it not measuring it) it read 83/50. No wonder my heart was going like the clappers every time I moved let alone went from sitting to standing. I ended up spending one day in bed, whilst I waited for my medication to kick in. I had to re-start taking midodrine, a medication I don’t like taking because of the awful side effects I get with it but nothing on the side effect front compares with not being able to stand without fainting. At the moment it’s a case of the lesser of two evils.

 

It’s not just me that is struggling with the heat at the moment, my poor pooches are miserable with it. On Monday afternoon I was very concerned about Frankie, as although we had been inside all day he started to seem quite agitated, he started pacing and panting very heavily. Thankfully there had been lots of information shared on social media and I suspected he may be starting to suffer with heat stroke. I immediately started wiping a wet cloth over his belly, Weimaraners are pretty much hairless there and then I poured cool water over his back. He stood there and let me do it, which is most unusual as unless it’s a really muddy, yucky puddle on a walk he won’t go anywhere near water.

 

On Tuesday I decided from around 11am onwards that I would cover him in a wet tea towel

 

 

 

And that worked a treat he was much happier. The girls however were a nightmare and point-blank refused to have anything put on them. As soon as I put a wet tea towel on them they would stand up and shake it off. So I decided to make a bandana type thing for them out of wet tea towels. As they have quite big necks it took a couple of attempts to get enough slack in the tea towel so I could tie it safely around their neck.

 

 

 

 

So the above photos show you how I folded the tea towel to accommodate their neck size.

 

They will tolerate these, it’s great as you can just take them off and get then get them wet again whenever you need to. Plus they can wear them when out on their walks and it helps to keep them cool.

 

The wet tea towel bandana dog fashion as modelled by

 

Mollie

 

Frankie

 

Willow

Strange Days

** warning vaguely political post**

 

I’m not a gambler, I think in all my life I have only ever put one bet on and even then I never entered a betting shop. However I am currently kicking myself for not placing a bet on the outcome of the UK General Election. As on the day Mrs May announced to the UK there would be a general election, I told a few people that I believed the outcome would be a hung parliament. Everyone I told looked at me as if I had finally lost it, Theresa May was flying high in the polls, the UK electorate had been force-fed the notion over the last two years that the Labour Leader Jeremy Corbyn was unelectable and here was me saying no one would have an overall majority. These are very strange times we are living in.

 

I am still recovering from election night, I didn’t mean to stay up all night. Jay was working late night on Thursday 8th June, I had gone to bed at 5pm as I was already stressed and tired not knowing how things were going to pan out. I did manage to drop off a little after 8pm (obviously I managed to listen to The Archers at 7pm the only soap opera I follow). I almost came too when Jay walked through the door but persevered with sleep. My plan was to get up between 3-4am when Jay took the mutts out, as I knew the majority of constituency results would  start to come through then. Things changed when I caught the news after returning from the toilet and the exit poll conducted by Sky, BBC and ITV was stating that it would be a hung parliament not the 100 seat majority we’d been told it would be.

 

A little shocked that the prediction I had made around 6-7 weeks ago was about to come true, I stumbled down the stairs. I planned on only staying up for an hour but ended up returning to bed at 05:30am. Twitter was just too entertaining to leave and so was the election coverage, littered with mistakes my favourite being Laura Kuenssbergs “rec*nt” instead of “re-count” or when David Dimblebys microphone was left on as a result came in, which he greeted with a very British “bloody hell”. I had to keep my sniggering quiet as Jay was fast asleep, luckily he had Friday off but he didn’t share my enthusiasm of wanting to watch the election results come in. Whenever we have had a party I have found I have been utterly exhausted for about a week afterwards. I had always put that state of exhaustion down to the alcohol consumed and being a social butterfly. It seems however it’s more to do with lack of sleep than anything else.

 

Friday was going to be an odd day anyway without the lack of sleep thrown in. Jay is rarely off on a Friday (unless I have a medical appointment), I had a friend coming over for a few hours and then bizarrely I met the new church outreach workers in the afternoon. The last bit was totally unplanned as neither Jay or I are religious, in 20 years of living here we have never met anyone from the numerous churches here. Due to Jay being off on Friday it threw us out all day, with both of us believing it was either Monday or Tuesday his normal day off.

 

I did manage to get about an hours sleep on Friday morning but as sleep was only coming in 10 minute bursts I decided that I better just get up or spend the day feeling absolutely horrific. It’s weird how sometimes even when you need sleep that having some can leave you feeling even worse. The tiredness hit me in waves all day, unfortunately for Immie, just as she arrived I hit a wall and spent the first hour desperately trying to keep myself awake. It was a good visit with lots of laughs. I was concerned when I had to explain to both my husband and Immie, why it wasn’t just the leaders of the parties on their voting slip. I can understand that from a youngster who has never been taught a thing at school about our parliamentary process but a 43-year-old? I think Jay was just having a blonde moment. I don’t profess to be a political expert and have never set myself up to be one however I was having to field numerous questions from both of them regarding hung parliaments, coalitions and minority governments. Even I ended up using google more than once, especially when I could feel my energy levels draining away.

 

I did toy with the idea of having a nap after she left but decided that it was too dangerous. I worried that if I went up to bed at 3pm I may sleep until midnight and then be awake for the rest of the night. So I busied myself on my Chromebook, checking out social media. Jay had gone to the doctors as he needed his blood tests as the medication he takes for his psoriasis  can affect his liver function. He also needed his asthma yearly review. So I had a quiet hour to myself or so I thought.

 

On Thursday I had a card put through the letterbox introducing the new outreach worker at the local church. I had left it on the lounge coffee table for Jay to see when he got home from work. I’ll be honest Jay and I had a good laugh about it for around 5 minutes and then forgot about it. When the doorbell went on Friday afternoon I briefly wondered what Amazon delivery it was that I had forgotten about. Unfortunately that isn’t something that doesn’t happen on a regular basis and is more evidence that I should be supervised at all times. Having shut the dogs in the kitchen, I made my way to the front door and to my surprise there wasn’t a delivery driver there holding a box in his hand.

 

I was greeted by a man with a huge smile, with a smaller slightly timid man behind him. He put his hand out for me to shake and said “Hi there I’m Mark and this is Gurjeet” in a lovely American accent. I recognised his photo from the card that had been put through the door the day before. I replied “Hi, yes you’re the man from the church. I have to be honest we don’t do religion here”. I didn’t want him wasting his time but I also didn’t want to be rude as I imagine he had possibly had many doors slammed in his face whilst introducing himself to the community. As he was a visitor to our shores I didn’t want him getting the impression that our small Devon town was an unfriendly and hostile place. However what he said next made me want to die with embarrassment.

 

“ Your necklace is so pretty, what does it say?”

 

I immediately put my hand up to my neck and said “oh god”, not a great thing to do, blaspheme in front of a Christian outreach worker but pretty bloody mild compared to my necklace.

 

“Oh don’t cover it up, what does it say? Truck the…”

 

“Erm no” I said not removing my hand. You see when the election was called I bought a new necklace. It was a bit of a laugh at the time but it didn’t arrive until 3 days before the vote. I had been wearing it solidly since it arrived and had completely forgotten that I was still wearing it when I answered the door.

 

Fuck The Tories

 

You see it didn’t say truck but something that rhymed with it and not something I was at all comfortable with sharing with a man of the cloth. These things always seem like a good idea at the time but I was now rueing the day that I decided to wear it non stop. I racked my brains trying to come up with a polite way of describing what it said. So I replied

“ It rhymes with truck but begins with F”

 and then held my breath, waiting to be condemned or lightening to strike me down. To my surprise he laughed his head off and said “That’s brilliant”. That threw me for a loop as I wasn’t expecting that. I have met a few vicars in my time, some have been stuffy old farts and others have been trendy Rev’s. Where I live it’s quite an old demographic so I was expecting a slightly if not excessively conservative response.

 

I needn’t have worried as for the next 20 minutes we chatted about Bernie Sanders, Jeremy Corbyn, if I had voted tactically and what had happened so far during the day. He wanted to catch up on all things to do with the election as he had been out on the doorstep all day meeting the local residents. I think I may have provided a bit of light relief as I imagine most of his conversations that day would have been about getting people into the local church and what issues were affecting the community.

 

I also used the opportunity to educate him about EDS, chronic pain and PoTs. So for me it wasn’t a wasted visit. In fact it was such an engaging conversation that I finished by telling him that although I was a lost cause as far as getting me to church, he was always welcome to pop in and have a cup of tea if he wanted a good debate. And I meant it, he was a total breath of fresh air and if I was at all religious he probably would have got me more involved in the church. He was sincere, interested and informed. We both decried how sad it was that no one seemed to be able to debate things anymore without resorting to personal slurs or even attempting to see things from another person’s point of view. We both linked this to the rise of social media, where if you disagree with someone you mute or block them, which means you surround yourself with only individuals that think like you.

 

After speaking with Mark and Gurjeet I felt more awake than I had done all day. Two Christian outreach workers that in the normal run of things I probably would never have met and  would have avoided talking to due to my own preconceptions. These are indeed strange days.

 

2015 was not last year

We are now six months into 2017 but my brain is still failing to catch up after last year. I am still catching myself thinking that 2015 was last year or writing the date as 2016. It’s almost as if 2016 didn’t happen at all and throughout all the years of chronic illness this has never happened to me before.

 

Last year holds very few memories for me, much of it is a vague blur. When you look at what occurred last year it’s hardly a surprise. From the start of the year I started to experience what I believed to be migraines several times a week. Over the course of three months they became daily and at the end of March 2016 I collapsed in the shower due to the pain. It was immediately diagnosed (correctly) by my gp during a home visit to be a low pressure headache caused by a CSF leak. My gp spoke to my PoTs / EDS consultant who advised increasing my salt tablets (salt can increase CSF production). I spent much of April in bed, three weeks after I collapsed I was referred to a neurologist who specialised in CSF Leaks. First hurdle jumped through or so I thought.

 

Despite my referral being marked as urgent, my referral was refused. This is not uncommon these days as many hospitals now employ admin staff (not medically trained staff) to sift through referral requests to see which ones they can deny and which ones they will approve. At the hospital the consultant was based, insider knowledge from an anonymous source informed me 60% of referrals to neurology were being denied for spurious reasons. When I still hadn’t heard anything back from the hospital by mid May (and now in daily agony) my referral was submitted again. By the end of the week I had an appointment for 22nd June, the day before the EU referendum vote hence why I can never forget date, as it was discussed in my appointment. Now cynical me would say what a devious  strategy for hospitals to keep their waiting lists down by refusing to accept 60% of referrals. But with the UK at the polls today for the General Election you’ve probably been all politicked out, I know I won’t be sleeping tonight whilst I wait for the results to come in.

 

A week after my hospital appointment in June I was admitted to hospital for various tests and the hope that I would get an epidural blood patch done. Those of you who regularly follow my blog will know that I didn’t get an EBP done but instead started monthly caffeine infusions and occipital nerve block injections. With the introduction of the infusions and injections things did improve a little but I was still pretty much incapacitated every day to varying degrees.

 

On the worst days I would be in bed for 20-24 hours, unable to lift my head up off the pillow whilst violently throwing up. My bedside bin (lined) became an impromptu sick bucket and I became an expert at throwing up whilst lying on my side. My world really began to shrink, much of the time I couldn’t watch TV or use a computer / phone as the light emitted was too bright even with sunglasses on. I ended up listening to audiobooks or the radio to pass the time. The back of my head and neck were permanently red from lying on hot water bottles. Days, weeks and months merged into one, something I am not surprised about as this is the worst medical condition I have had to deal with.

 

I look back now and I am surprised that I got through this at all. I was lucky as I had the support of my husband, parents and friends. Someone without that support network would have really struggled. When I was able I could also get support from a Facebook group for those who have a CSF Leak, they helped me in so many ways. I now realise that I have probably been leaking on and off since I had a lumbar puncture in 2009. Although it’s not completely gone away, I still have days where by 2-3pm I have a headache start that will only go away if I lie down, I have quality of life back. Lying in a darkened room, completely alone for much of the time is no way to live. I have to be honest I don’t know how I would have coped if the pain hadn’t suddenly dramatically reduced just before Christmas last year. You don’t realise how much you have even when chronically sick before, until it’s gone. It really shocked me how quickly life as I had known it had been taken away.

 

Even though I know 2016 happened and have snapshot memories of things that happened, it does feel like life completely passed me by. It is a really bizarre situation. Obviously it’s quite normal at the start of the year to think the wrong year was last year, for example in January 2017 you were still probably thinking 2015 was last year (or maybe that’s just me?) However it’s June now and I am still struggling to accept that 2016 has been and gone, that 2015 wasn’t last year its two years ago now. It a really hard thing to describe unless you’ve been through a similar situation.

 

I realised just how caught up I was in still thinking that 2015 was last year when I had to correct myself when speaking to my hairdresser this week – again something I rarely had done last year was my hair! I explained that I was caught up in this brain trap due to losing much of last year to being so ill and she totally got it. Some people I have spoken to about it don’t or can’t understand how you can lose a year but realistically it must happen to many people for a variety of reasons. 2017 just seems so alien to me it takes a conscious effort to remind myself it is this year. One mantra I am repeating constantly is 2015 was not last year. I have six months left to recognise this year is 2017, let’s hope it’s sorted by 2018!