Month: September 2017

17 Years

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

 

On Monday 25th September Mr Myasthenia Kid and I celebrated our 17th Wedding anniversary. That is quite an achievement these days I think, especially when I think about all the weddings that took place around the same time as ours and at least 50% have fallen by the wayside. It’s an even bigger achievement to stay together when your world has been totally turned on it’s head. Just seven years into our marriage I became chronically sick, we deviated from the life plan that we had been following.

 

I have been incredibly lucky that despite all the shit that has come our way we’ve grown stronger rather than split. Many couples when the wife / girlfriend becomes sick disintegrate. Research has shown men are more likely to leave their partners when they become sick. A quick google provides a multitude of articles on the subject. A male friend of mine admitted that he would leave his wife if she became sick as that was not what he had signed up for. I was disgusted and basically the friendship ended immediately after this conversation. I couldn’t believe anyone could be so cruel.

Hubby and I got married in Sri Lanka, just the two of us. I have always found it highly amusing the indignation this causes in people, it really doesn’t concern ie not related to me, not even friends with me. I have had quite a bit of stick over the years from complete strangers for getting married without my family present. Yet neither of our families minded that we were getting married abroad and that we were effectively eloping. At the end of the day I was marrying Jay not anyone else. I have been accused of being rude, disrespectful and making a mockery of marriage. It’s left me absolutely pissing myself that people can be so reactionary years after an event, which up until I told them about it, they had no clue it had happened. How does that even make sense? At the end of the day however a couple want to get married is up to them and no one else deserves a look in. Especially in this day and age where so many couples pay for the majority of it anyway.

 

Our Wedding / Honeymoon was also the first time in our relationship that we had been on holiday together. It was only the second time I had flown. It was all very scary and new. Our wedding also took place right in the middle of the petrol crisis ( Link Here ) we didn’t even know if we were going to make it to the airport to even have the wedding at one point, as fuel was running out everywhere. Like most insurance our travel wouldn’t cover us for acts of civil disobedience which the petrol crisis had been classified as, so if we were unable to get to the airport due to it we couldn’t make a claim. Any bride is stressed out before her wedding day but this going on, with all the others things that needed organising was enough to push me over the edge.

 

My dad had been planning to drive us to Heathrow and then collect us when we came back. However due to the shortages of fuel it wasn’t going to be possible so we booked coach tickets. As we both worked in retail we were classed as necessary workers (can’t think of the proper phrase) along with the police, doctors, paramedics, etc so a friend filled her tank up and dropped us on the bus station the day we were leaving for Sri Lanka. My parents came up from Plymouth and sat with us until our coach was leaving. It all felt pretty surreal.

 

 

We couldn’t get married in Sri Lanka until we had been in the country for at least 5 days. We  met the registrar who would be conducting the ceremony on either the second  or third day of our stay. It’s really strange that I can’t remember the day but I can remember one of the hotel staff carrying a sign with our room number on, which meant we had to go to reception. We were in the pool at the time so covered ourselves up the best we could with towels and a sarong for me. Had the staff been kind enough to let us know why we needed to go to reception we would have made sure we were properly attired. I wanted the ground to swallow me whole when I realised I was having to conduct an official meeting about our wedding wearing a swimming costume.

 

I remember there being one other meeting with the wedding coordinator to decide what time we were going to get married on the following Monday (that was our 5th day in the country). We knew virtually nothing about what the ceremony was going to be like, it was all very seat of your pants stuff. If the cocktails at the bar hadn’t been so lethal I would have had several sleepless nights. We plucked our two witnesses out of a group of people at the tour operators meeting the day after we had arrived. The conversation went like this “ Hi, we need two witnesses for our wedding. Are you doing anything on Monday?” and that was that. We have been friends ever since!

 

I won’t lie hubby and I had been drinking (quite a lot of)  the local alcohol the morning of the wedding. Which probably helped a great deal when the registrar attempted to marry the wrong couple and called me “Samantha Jane Murphy” I fell about laughing, whilst Hubby corrected him. Had I been sober I’d have probably gone mental at him. Instead it made for a very funny wedding video! We were very lucky as it was the end of the Monsoon season and there had been a lot of rain in the weeks before, our wedding was the first to take place outside for several weeks. Samantha Jane Murphy has hers indoors later that day, as we passed them on our way down to the pool. How many people can say that on their wedding day they went for a swim? Oh and we rode an elephant.

 

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I’m still not smoking, that will be 8 weeks on Sunday. Still not sleeping properly so I have purchased some of the lotion from Lush called Sleepy that people are raving about and will see if that helps at all! I still have ptosis daily and have to take mestinon 3-4 times a day or my legs stop working, that must be the muscle spasms LOL!

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https://well.blogs.nytimes.com/2009/11/12/men-more-likely-to-leave-spouse-with-cancer/?mcubz=1

 

http://www.dailymail.co.uk/news/article-1214051/Men-likely-leave-sick-partners-study-shows.html

 

http://www.nbcnews.com/id/33832513/ns/health-cancer/t/men-more-likely-leave-spouse-who-has-cancer/

Sleep and other fairy tales

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

When I gave up smoking (nearly 7 weeks ago) I thought I had discovered the secret of a good night’s sleep. Initially on giving up I was sleeping like a baby, I have never understood that expression as most babies I know don’t do the sleep thing! I was dropping off within 30 minutes of turning off my bedside light and then sleeping for a good 10-12 hours. It was bliss, my back hated it but I actually started to feel something I hadn’t felt in years….refreshed.

 

Fast forward four weeks and the problems started, I also noticed at this point how unhappy my joints seemed about staying in. The slightest thing was bringing on a subluxation or a dislocation. My feet were also regularly spasming forming almost a tight ball, imagine the top of your toes touching the sole of your foot. Initially I put it down to stress, we were choosing the new colour schemes for the kitchen and the lounge, that sort of thing will keep me up at night, worrying that I have got it right. Not sleeping or poor quality sleep always seems to effect the stability of my joints. Which is why it is so important that I get a reasonable amount of sleep of average quality. When I get neither the hours or the quality not only are more joints increasingly unstable but I also end up with increased pain levels.

 

I take Melatonin and an antidepressant called Mirtazapine to help me sleep and for a good year they have been highly effective. However in the last 4 weeks it suddenly feels like I have become immune to both of them. I never go to bed until I feel tired and up until about 4 weeks ago within an hour of taking those medications I would be out like a light (about 85%) of the time. So to suddenly go from them working to still being awake two to three hours after ingestion is just bizarre. It’s also incredibly frustrating.

 

Many doctors don’t get it when you speak to them about lack of sleep or lack of good quality sleep. This is especially true if you are chronically sick, it seems that if you aren’t working and don’t “have” to do anything due to illness, lack of sleep really shouldn’t bother you. I have had this from doctors myself, it wasn’t until I was effing and blinding, crying hysterically that my gp got how desperately at that moment I wanted and needed to sleep. It shouldn’t have come to that as I had been talking about sleep issues to my hospital consultant and gp for months. It shouldn’t have been a surprise to either of them that I was now on my knees after months ( actually years) of ineffectual or absent sleep. Now when I complain about my lack of sleep I am immediately listened to. Maybe it’s the thought of the horrid, angry, crying Myasthenia Kid turning up in the waiting room that prompts such a rapid response.

 

At the moment I am soldiering on, I don’t want to get involved with doctors at the moment. Especially after Julys appointment and the hemifacial spasm (or I’m a neurologist and I will make it up as I go along) diagnosis. I am fed up with the whole of the medical profession at the moment. This is quite a typical response from me after a shitty appointment, I withdraw. My confidence has been knocked and I don’t feel I could advocate properly for myself if needed. I have found when you are chronically sick you need to be at the top of your game when dealing with any medical professional or all sorts of shenanigans can take place. You know meds being withdrawn, stupid suggestions made etc etc. At the moment it is better that I ride this out, regroup and then decide what I need to do next.

 

The joint instability is really bugging me at the moment, yesterday I battled my left hip all day. I could feel it grinding against the socket every time I moved. It kept subluxing and then popping straight back in again. There was no particular movement which was worse than any other. This meant I had zero ways of avoiding it, other than lying completely flat, which I was not prepared to do. Not after spending so much of my life last year horizontal. Today I have had issues with slipping ribs, every time I bend forward the rib is slipping and hurting like crazy. It is a weird feeling, so now I am trying not to bend forward but sometimes you don’t have any choice.

 

My body is still wracked with muscle spasms and they really have got a lot worse over the last 6 months. My feet spasming have been a problem for years, it always used to happen at night when I had gone to bed. Now it happens day or night regardless of what I am doing. The spasms can be so violent they dislocate my big toe. There is nothing I can do to stop them, I just have to attempt to massage the spasm away or wait for it to pass. My thumbs are also starting to spasm and get stuck (not like trigger finger) clamped to the palms of my hands. These do quickly release by me pulling the thumb away from the palm and stretching it out. It’s a strange one and I know that it’s not helped by the current sleeping situation.

 

Sleep, such a natural thing to do but at the moment it seems to be nothing but a fairy tale. I’d have more chance currently of meeting three bears in my house eating porridge than having a decent night’s sleep.

 

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Breaking news on Saturday 16th September I actually had a good night’s sleep and dropped off quickly. I will probably go back to not sleeping from tonight!

And then it went straight back to not being able to drop off and lying awake for hours in the middle of the night.