17 Years

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.

***

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

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.

* * *

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.

Warning shot

This last week has been a tad crazy. By “normal” people’s standards it’s a very light week, especially when you consider there was no full-time or even part-time work involved. My body is still playing catch up and my mind despite it being ten years on (since becoming sick) is struggling to come to terms with the fact that I can’t just do stuff like a normal non chronically sick person would.

There have been various things that have needed doing around the house for an absolute age, actually just months rather than years but the week before I had got to the point of no longer being able to put up with these jobs not being completed. Our tumble dryer (condenser) had developed a leak and now was having the habit of tripping out the electrics after it had been used. It had been unplugged and unused for the summer however we hit September and all it seemed to do was rain. I don’t mind drying the day-to-day washing on an airer in the house if it’s not possible to dry it outside but towels and sheets are another story. I bite the bullet and arranged for an engineer to visit. He would be coming on Tuesday which was also hubbys day off.

Two weeks prior I had arranged with my hairdresser to come over on Wednesday 6th to sort my hair out. It needed a full head of highlights as my greys were starting to show or fairy glitter strands as I like to call them. Plus I couldn’t do a thing with it, so it needed a good cut as well.

In January this year we had a leak behind a plasterboard, it was all sorted and settled. We decided that we would sort out getting the repairs done ourselves and then redecorate at our own pace. Hubby had been given the job of sorting out the plasterer. I had simply refused to be the responsible adult all the time just because I was at home and don’t work. It’s not just that, hubby also has a bit of a phobia about contacting people he doesn’t know (in his home world, in the world of work it’s not a problem), so he avoids it at all costs rather than confronting his fear. I was practicing some tough love but after 8 months I had to admit defeat. If I didn’t want to put tinsel around the holes in the plasterboard at Christmas I was going to have to sort it out myself. Luckily on a local community group on social media someone asked for a recommendation for a plasterer. Two names were mentioned I contacted both, arranged for them to come over and have a look at the job / give me a quote. The one I chose was available the following Thursday (7th).

I knew as I looked at the week ahead it was going to be tiring but I just assumed that I would bounce back after a good night’s sleep and be fine for the following day’s  activity. What an idiot I was. I am still trying to recover from last week. I have suffered with fatigue before but the levels of fatigue I am suffering with at the moment make me feel on a pretty regular basis that I am having an out-of-body experience.

Tuesday wasn’t too bad other than it was embarrassing. The cause of the leak in the tumble dryer was that the water collection point at the very back of the machine not accessible to mere mortals like you or I was completely choked up with dog hair. When an engineer tells you that’s the worst they’ve ever seen one blocked up, you want the ground to swallow you whole. The tumble dryer is cleaned regularly, the filter is cleaned after every load that is dried. The condenser unit is washed through once a week and it is hoovered inside at least once a month but even doing all that wasn’t enough to stop it getting overrun with dog hair! Remember we have three so maybe that is why? That cost us £50 for about 5 minutes work but it needed to be done.

That night I used the tumble dryer on one load. I really wished I hadn’t as once I had gone to bed as I spent the night panicking that it would have knocked the electric out in that part of the kitchen which unfortunately the fridge freezer is in. A few times before the tumble dryer had been fixed I had come down in the middle of the night to find that the fridge freezer had no power being supplied to it. What had been happening was the automatic safety cut off for the tumble dryer had been triggered which was then knocking out the fuse but not in the main fuse box. Wednesday morning I was absolutely exhausted from having very little sleep. And of course the Fridge-Freezer was absolutely fine.

My hair took three hours and by the time it was finished all I wanted to do was go to bed and rest, which is exactly what I did. I could barely sit or stand as my back was so painful from sitting upright for so long. My hairdresser did a fantastic job and she said my hair has come back lovely and thick after it thinning due to my hormones being out of whack. I am much happier with how it looks and I am so glad I can get it done at home without the added stimulation of the lights / noise / people at a salon. I thought going to bed for the rest of the day would be enough for me to bounce back for Thursday and the plasterer being here. No it wasn’t.

Thursday was an early start, I’d had to set my alarm as I knew with being so exhausted I would want to sleep on. That luxury wasn’t available to me when the plasterer had said he would be here for 9am. I had assumed that the job which was to skim a wall and fix two holes in the plasterboard would take a couple of hours, after all it wasn’t a whole room. Jay would be at work so I would have to ensure the dogs behaved and were out of the guys way. We installed a free-standing baby gate at the bottom of the stairs so that the dogs wouldn’t bother him whilst he worked. Normally the dogs are pretty good when there is someone working in the house, after the initial excitement they tend to just settle down and go to sleep. Not last Thursday they decided that they would bark and generally make a nuisance of themselves. I did managed to keep them occupied by stuffing Kongs with peanut butter and bread. Eventually they did just flake out and go to sleep but not until after a stressful first few hours.

The plastering took over 5 hours and by the time he left I was on my knees with exhaustion. I could barely function at all I was so tired. Again I thought with a good night's sleep and I would be ok. I would have a lazy day Friday and everything would be fine. In the old days when I first got sick and possibly up until last year that would have been the case. However for some reason this year it has all changed and it’s taking me much longer to recover and smaller things are causing major recuperations. It is very frustrating as my brain is refusing to acknowledge this. Friday I just felt drunk or extremely hung over all day. I couldn’t watch TV or listen to the radio as I just couldn’t follow what was going on.  I did as little as possible Friday and Saturday I just slept on and off all afternoon. I had hoped by Sunday that I would have turned the corner but after a short visit from my parents in the early afternoon I just crashed and ended up in bed for a few hours.

This week is a quiet week, I had a friend visit Monday which was good as it forced me to behave and do nothing. Tuesday hubby was day off so he did the cleaning and any household chores that needed doing. My head is still giving me lists of things it insists I must do but my body is saying no. I had hoped I would be ok this week so I could potter around and get a few jobs done before Mr Myasthenia Kids holiday next week but it’s just not going to happen. Mestinon / Pyridostigmine Bromide is only lasting 3-3.5 hours instead of the 4-6 it had been lasting previously, this is a warning shot to let me know I can’t keep pushing myself and expect no consequences. Hopefully the next 6 and a bit weeks are going to be very quiet before we go on an adventure to the Emma Bridgewater Pottery factory as a birthday treat.

Clutching at Straws

The letter I had been dreading the arrival of turned up on Saturday. I had almost begun to believe that such was the inflammatory nature of it contents that, I had been denied a copy on the grounds it would be perilous to my mental state. The letter was from the neurologist I saw at the end of July. It’s contents were only slightly better than anticipated.

I had believed that the letter would suggest CBT or a visit to see a neuropsychiatrist. It wouldn’t be the first time it had been suggested due to my obscure symptoms and the belief on the various neurologists part that because they didn’t know the answer my symptoms were psychological rather than physiological.

I have now been diagnosed with Hemifacial spasm of unclear cause. Now for those of you who don’t know what a Hemifacial spasm is, it's basically a muscle spasm in your face. Having done a little digging around on the internet I have found out that Hemifacial spasm can be due to Dystonia, MS, Compression of a facial nerve, lesion on the brain stem, brain tumour or of unknown cause. It is also an incredibly rare condition with Patient Info (https://patient.info/health/hemifacial-spasm-leaflet) stating that it affects 4,000 in the UK.

The only problem with this diagnosis is that this never started out with the twitching that is described by every website I have read over the weekend. Google Hemifacial spasm and one of the first things you will read is muscle twitching.  Of course I have had muscle twitches but they have never been so bad that I have sought medical advice for them. This spasm / ptosis / condition came on overnight. Also it is the right side of my face that is affected, where this condition mainly affects the left side of the face. Hemifacial spasm is not treated by the use of mestinon so this diagnosis ignores the response I have to this medication. So it’s the usual horse shit that I have got very used to over the last ten years.

It’s not the first time I have heard of someone with ptosis being told that they have Hemifacial spasm. I can remember years ago on a forum a woman in the UK being told the same thing, despite mestinon resolving her ptosis and her not having muscle twitches. It seems this must be the go to diagnosis when they can’t admit they don’t know or if all signs are pointing to MG.

Apparently according to the letter “On observation of the facial problem today although there was some flattening around the corner of the mouth, the predominant problem is in fact of eye closure on the right hand side rather than ptosis, ie there is a contraction of the orbicularis oculi muscle rather than a weakness of the levator palpebrae superioris. The remainder of the facial movements were at times a little limited….” All this without actually doing a neurological exam, assessing the strength of my eyelid closure etc? **Sarcasm**

All the medical papers I have read so far in a limited time period have said about the corner of the mouth being pulled up by the muscle spasm in Hemifacial spasms. That doesn’t happen with my mouth, the corner of my mouth droops. I have in the past had muscle spasms where the side of my mouth has pulled back but it’s not lifted up or dropped down. It also prevented me from opening my mouth and I ended up with a NG tube in for a few hours.

I am a little sceptical at this latest diagnosis, as you have probably guessed because it really doesn’t fit properly. There are aspects of it that do fit like the muscle spasms I deal with on a daily basis in my back, hips and feet, if the diagnosis was generalised Dystonia, which can run alongside EDS. However my ptosis never resolves with heat, which if it was a muscle spasm you’d think the heat would be enough to relax the muscles? The only thing that resolves the ptosis is rest, ice or mestinon (pyridostigmine bromide).

However the doctor did pay me a massive compliment by knocking ten years of my age! In the opening sentence it says I met this 33-year-old lady…. Happy days or they were simply getting confused with the notes from ten years ago.

What really irritated me was that this doctor has claimed that there is nothing wrong with the muscles in my face, the nerves or the neuromuscular junction yet Hemifacial spasms are a neuromuscular disorder. Also according to https://www.bcm.edu/healthcare/care-centers/parkinsons/conditions/hemifacial-spasm website my EMG wouldn’t have been normal if I had hemifacial spasm “ It will show irregular, brief high-frequency burses (150-400Hz) of motor unit potentials”.   When I found this out I roared with laughter, so apparently I can’t have MG because my EMG was normal but I can have Hemifacial Spasm with a normal EMG despite the fact it should show abnormalities. Welcome to the world of neurology where we change the rules of diagnosis depending on the condition.

The consultant has recommended I be treated with Botox to relieve the muscle spasms. However one of the side effects is developing Ptosis……………………...I know you couldn’t make this shit up could you? Also Botox is contraindicated with MG. So would I really want to risk a Botox injection for a condition it seems highly likely I do not have.

There is nothing worse than a doctor clutching at straws, especially in this day an age where a patient can debunk their diagnosis in a matter of minutes. I truly believe that this is what has happened here, they know they can’t get away with saying there is nothing wrong with me so come up with this drivel. I am embarrassed for them.

Other Links for information on Hemifacial Spasm

https://en.wikipedia.org/wiki/Hemifacial_spasm

http://www.empowher.com/hemifacial-spasm/content/hemifacial-spasm-uncontrollable-muscle-contraction-face

http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/hemifacial-spasm