Thursday, 21 September 2017

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.

Thursday, 14 September 2017

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.