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 i 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!

Thank you

With Jamie’s guest blog post last week In Sickness & In Health  it brought me back to thinking about a post I wrote in May 2014 and reblogged in March 2015 called Weathering The Storm . It was good to see Jay’s perspective of things from the side of being a carer, husband and breadwinner because I do feel a tremendous amount of guilt about the way my illness has not only impacted my life but of his also.

It was lovely getting feedback from people who see us in the real world and from those who only know us through the internet. Not that I want or need outside validation to know that I have a wonderful relationship with my husband, as quite frankly I find it incredibly hard to accept compliments or to “see” what others see in us. To find out your relationship is an inspiration to others is obviously very nice but it also feels quite strange. I have never seen either of us as any kind of role model. It is a really weird situation to explain without sounding like an ungrateful twat and that couldn’t be any further from the truth. I am truly grateful (as is Jay) for everyone who took the time to leave comments on Facebook and on the blog post. We were both very moved by the things people wrote, so we want to say thank you for that.

The thing is Jay and I don’t think we are anything special, we just work. We are very similar in our outlook and sense of humour. We both mean the world to each other. Neither can imagine life without the other, when I think of family he and the dogs are it. When something good or bad happens he is the one I want to tell first but to me that is how any relationship should be. I suppose it seems strange because I know we aren’t one of those couples that are constantly doing PDA’s (public displays of affection), we never have. We are by nature quite private people, which is hilarious when you think about it in connection with my blog. However like any blogger or anyone on social media there are things that you don’t share because you still want a level of privacy and to have something that is yours and yours alone.

I wrote a lot about the guilt I felt due to getting sick back in 2014’s Weathering The Storm, things have changed a bit, I still feel pangs of guilt but not on the level I used to. I know that I didn’t do anything to cause my predicament or to deserve getting sick. It is just one of those things that happens. I did feel very guilty last year due to the amount of stress that Jay was under due to my CSF Leak and the amount of time he had to take off work at short notice. I worry about the impact it has on his career and his standing amongst his colleagues yet they were the ones who took the time to praise him for his blog post. That meant a great deal to both of us and reassured me that at least in his work world, he isn’t thought any less of due to me.

I am lucky I have a partner who will stand by me through thick and thin. I know he loves me, he tells me everyday and I tell him the same. We had so many plans before all this happened and it’s only in the last few years we have been making plans for our future again. Until a few years ago I could see no future and no point in planning anything long-term. He has taught me that plans can always change no matter what the situation but it always important to have plans, dreams, aspirations rather than always being focused on the here and now. Even when things were really dreadful last year and I was confined to bed for much of it (due to a spontaneous CSF Leak) we would talk about going on holiday, about fundraising for a new wheelchair etc. Even if those things seemed nothing more than a flight of fancy at the time, they are what kept us both going.

I think a lot of the strength of our relationship comes from the fact we have shared hopes and dreams. We aren’t working against each other but together for common shared goals. A relationship is the biggest feat of teamwork you will ever take part in. We work together because we want to be together come what may. And whilst we have both had utterly crass and insensitive things said to us over the years, as in “leave / walk away, this isn't what you signed up for” or “If you were my wife I’d leave you”, we haven’t taken it personally. Rather we have felt a deep sympathy for the partners of those who have said those horrible things. Wondering if they knew that they were once accident or illness away from having the love of their life abandon them. It never crossed Jay’s mind to leave and if the shoe had been on the other foot, it would have never crossed mine either. When we took our vows we meant them, they weren’t said with our fingers crossed behind our backs in case anything ever changed. We aren’t like that and can’t understand people who are. I really do think those sort of people are in the minority, well I hope they are.

So from both Jay and I we just wanted to say thank you, to everyone who read the blog post and to those of you who took the time to leave a  comment. We read every single one and they all meant a great deal to us. Jay has promised that he will write another piece in the future, again the subject matter will be entirely down to him.

Thank you from us both and of course the dogs.