Month: December 2014

Hello 3am

/ RachelMorrisMcGeethemyastheniakid / 2 Comments

Hello 3am said no sane person ever, after having over a month of waking up at that time and then being unable to get back to sleep no matter what time they nodded off.


This is the hideous situation I have been in since the end of October. Initially I believed my waking up at 3am was due to being excited about my forthcoming birthday in November. When this came and went and I was still not sleeping past 3am I was at a loss to explain it. Why 3am? Why nearly every night? Even if I have had a few nights where I have slept past 3am I have still woken up at 4:30am – 5am. It gone beyond a joke now.

Due to this early waking I am incredibly tired, on top of my normal level of fatigue. It doesn’t seem to matter what time I fall asleep when the clock strikes 3am I am awake. The worst night was when I dropped off a little after 9pm only to wake at 11pm. I truly wanted to cry that night. I feel as if I am stuck in a sleep pattern I can’t correct and it makes it a very long day when it starts at 3am.


I am averaging between 4-6 hours a night, this simply isn’t enough for me to function. My dysautonomia symptoms are going haywire, breathing, heart rate, temperature control and digestion have all started to go wonky. It is getting to the point where I am dreading going to bed because it really isn’t going to be worth it. Nothing is keeping me up or preying on my mind. I have no problem at all dropping off to sleep I just can’t stay that way. 


The condition is called Middle of the night Insomnia or Sleep Maintenance Insomnia. It is called sleep maintenance insomnia or middle of the night insomnia as sufferers report being able to drop off to sleep with no issues but they simply can not stay asleep either having frequent prolonged awakenings during the night or like me wake up at 3 or 4am and are not able to get back to sleep again. I have to admit this is much worse than the bout of insomnia I had in 2011, where I would go three days without sleep and then sleep for 13-16 hours. This type teases you by making you believe every night this must be the night when you will sleep all the way through and then you wake up and discover it is 3am again.


Whilst researching this blog post and looking for advice to help myself I did chuckle when the articles stated someone with Sleep Maintenance issues has problems getting back to sleep with it usually taking them longer than 20 minutes. I wanted to scream I don’t go back to sleep at all!!! Not one of the articles addressed those of us who wake up and stay that way. They also trotted out the same advice all of which I have been doing or have been aware of for years 1) sleep in a cool room,  2) No caffeine after 2pm – I don’t stick to that one as it is waking up not getting to sleep that causes the issue, 3) Having a good bedtime routine, 4) getting up if you haven’t fallen asleep within 20 minutes, 5) using relaxation CD’s. All of which I have tried at various points over the years either altogether or individually nothing works.


Many of the articles I looked at also talked about the various reason why people suffer from insomnia. Anxiety insomnia is something that most people will suffer from at some point in their life. Have you ever not slept before an important event such as taking an exam or getting a test result? Anxiety insomnia becomes an issue when everyday worries stop you sleeping for at least 3 nights a week. This can signal that the person may be suffering from generalised anxiety disorder. Mental health and sleep are intrinsically linked. Many people with depression find that either they can’t sleep or they want to sleep all the time. I am not currently suffering from any mental health issues – I say currently because I have suffered with them in the past and it is highly likely I will in the future. 


This is a great article looking at why it is believed we need to sleep and what causes insomnia Brain Basics, Understanding sleep. Although it talks about smokers waking up early due to nicotine withdrawal, I can tell you that the last thing on my mind when I wake up at 2/3/4 am is a cigarette! It is usually why??? Why have I woken up again at such an early time?


Other suggested causes of insomnia were obesity – causing sleep apnea, caffeine / smoking or other stimulants consumed too close to bedtime, poor sleep hygiene, chronic pain or medications with the side effect of insomnia. None of which were causing my insomnia, my pain at night has been reduced since starting physio / Pilate’s and only very rarely does my pain medication cause insomnia and when it does it is the type of insomnia where I can not drop off to sleep. I can not find a cause for the bout of insomnia. What I have found is that the circadian rhythm and the autonomic nervous system work together (it is believed although much more research is needed for basic info use this link) so perhaps this is why I am currently suffering from sleep maintenance insomnia?


For sleep maintenance it is suggested getting more sunlight later on in the day to try to sort out your circadian rhythm. The circadian rhythm is a biological process that rises and falls throughout the day and plays an important part in sleep disorders. It can be thought of as your own internal clock and it informs the body of when sleep is needed and when you need to be awake. Many sleep disorders are caused by there being an issue with the person’s circadian rhythm and day light plays a massive role in regulating this. I was unaware until I started researching my blog piece that some people who are blind suffer badly with insomnia due to no light reaching their retinas. Due to my situation of being pretty much housebound I do not get exposed to daylight on a regular basis. So should the insomnia situation continue I will certainly look into investing in a light box to see if that helps.


Last night I managed to sleep from a little after 20:30 until 05:15am. I did have many periods during the night when I was awake for a few minutes mainly due to toilet trips. I consume vast amounts of fluid over night (we are talking litres) which my own pet theory is that I am trying to boost my blood pressure overnight. Every ones blood pressure drops overnight but due to my screwed up autonomic nervous system it drops too low causing sweating, confusion on waking, dizziness etc. When I woke up at 2am my heart sank but after going to the bathroom I went straight back to sleep. I woke again at 3am, 4:30am but managed to roll over and resume sleeping. I am excited but I know one night of decent sleep does not a sleep maintenance insomnia cycle break.


I hope that last nights breakthrough wasn’t just a product of being sleep deprived for so long. If it was it will mean I am back to square one tonight and that thought fills me with dread. Yesterday I had got to the point was hallucinating from my lack of sleep and was more clumsy than normal. It was very difficult to focus on anything and throughout the day I felt like I was having an out-of-body experience.

Unfortunately the cycle resumed the following night with last night being the worst it has been for a long time. I have been up since 01:30am and its beginning to feel like the film Groundhog day. I am seeing my gp in the next few weeks so I think you can guess what we will be discussing!

Vulnerability

/ RachelMorrisMcGeethemyastheniakid / 2 Comments

The media or should I say the political parties who get media coverage are always using the phrase “the most vulnerable in society – the young, the old and the disabled”. How does it feel to be considered one of the most vulnerable in society? Well it makes me laugh, vulnerability is not something I feel on a regular basis.

The groups that are implied in the phrase “the most vulnerable in society” are those who lack a voice in mainstream politics, although I would argue that mainstream politics seem to cater for the silver vote much more than they do for the young and the disabled. Being young or disabled in this country can make you feel invisible but does that invisibility make you vulnerable? Does it mean every young person is incapable of fighting for their rights and the same goes for the disabled? Under this coalition government the disabled have become more visible through things like the WOW Campaign (war on welfare) and the disabled being featured slightly more in the media. Due to the public spending cuts more children and disabled people are living in poverty than ever before. How can this be when our Prime Minister states that he is looking after the most vulnerable in society?

I could go on for hours about the state of politics in the UK however I know that is not the kind of stuff many of my readers go in for.

I hate the phrase “the most vulnerable in society” as on the whole I don’t feel that vulnerable. I am lucky that I have a voice and I am not afraid to use it, I am also lucky not to have to rely on strangers for my care. There have been many stories about elderly people in care homes being abused by the very people who were supposed to be looking after them. They are  some of the people I consider to fall within that phrase, also those unable to advocate for themselves due to their young age or disability. Do I feel that I fall into this group? Not at all. It is a sweeping statement that does many contained within its remit a huge disservice.

No human wants to feel vulnerable. To feel vulnerable is to feel weak, I hate to see myself as weak and needing the assistance of others. When embarking on writing this post I really did consider myself to be outside the remit of those considered vulnerable in society. However on exploring the topic as the words danced across the page I began to realise that I am vulnerable. If hubby was to leave tomorrow I could not look after myself. My life, the independence I value would be stripped away in an instant. With no family near me and unable to look after myself, I could very well find myself dumped in a care home not equipped to look after a person of my age, with my complex health issues. Writing this blog post has made me aware of how vulnerable I am, which also makes me angry when I hear the politicians say they are representing me and others like me, when clearly at a whim they are in a position to push me into an even more precarious position.

There have been times when I have felt extremely vulnerable, when through circumstances I have not been able to advocate for myself. The first time I felt like that was when I was in hospital many years ago. Due to Nystagmus (rapid eye movements) and double ptosis (both eyelids had drooped down and I was unable to open my eyes) I couldn’t see. Suddenly for the first time in my life I was effectively blind, unfamiliar surroundings do not help when you feel vulnerable. I managed to find my call bell and summoned a nurse to my bedside asking her to get my mestinon for me. 

For those of you who have followed my blog for a long time will know that Mestinon is a drug used to treat Myasthenia Gravis – you know the illness I don’t have. It resolves my ptosis when I take it yet no one has been able to explain to me why it works when I don’t have MG. 

The nurse got the Mestinon for me and then placed it on the table at the end of my bed, due to not being able to see I couldn’t get to it and I started to cry. Firstly through frustration and secondly through fear. The nurse then shouted at me to stop crying as the doctor would be coming soon and he wouldn’t want to see me if I was crying. This lead to me sobbing more due to her complete lack of empathy and compassion. I have never felt so alone or so vulnerable as I did in that moment. If you had asked me then if I fell into the category of the most vulnerable in society I would have agreed wholeheartedly. I had no energy left to fight or kick up a fuss as I normally would have done. The inability to see had left me paralysed with fear.

Once the mestinon had been taken my sight was returned within 30 minutes. That was the day that the neurologist at the local hospital told me I 100% did not have Myasthenia Gravis. His explanation was that in 2007 I had a virus which attacked my brain and had left me with a condition called “Cortical Plasticity” if I took the drug Lamotrigine I would be better in 5 years. In other words complete horse shit. The doctor still to this day refuses to see me in the neurology department as he is still convinced I do not have Ehlers Danlos Syndrome or Dysautonomia. He stands by what he has written in my hospital notes (which he has refused to let me see) and has never actually told me the diagnosis, which was alluded to by another doctor. I had been diagnosed with Somatoform disorder.

For a long time after that hospital stay I was defeated. I had no energy to fight through my husband, family and friends I slowly regained the confidence and strength to start fighting again. At that point in time I did feel vulnerable, weak and exhausted. I felt  I had no voice and no one was fighting for me. It was a hard lesson to learn, in the medical world the patient has to fight for themselves. If you don’t advocate for yourself when the medical profession think you should have your own voice, anyone speaking on your behalf will not be listened too. 

It could be argued anyone in that position would have felt vulnerable and I would agree with them. Vulnerability for many of us is a state of mind it is not a permanent condition which is why I hate the phrase “the most vulnerable in society” because many of us in this perceived group are far from vulnerable and are more than capable of making our voices heard. It is a feel good phrase for politicians, it makes a good sound bite but it also tars the old and the disabled and the young with the same brush.

The young, people under 16, possibly under 18 are vulnerable they rely on those looking after them for everything. They do need to be watched over and cared for. The rest of us – the disabled and the old, who don’t have to rely on people speak on our behalf because we a physically able and of sound mind are we vulnerable? Obviously if I lost the help I need from my husband such as washing, dressing and leaving the house I would be very vulnerable. If  a person has help and is being abused by that help or the help is abusing its position of trust then yes you are vulnerable. Maybe I don’t consider myself vulnerable as I think of it as a sign of weakness?  

Does the phrase irritate me because I feel that this current government on the one hand uses this phrase so easily and with the other is quite happy to paint anyone in receipt of disability benefits as a cheat or a scrounger? I really don’t know. All I know is like the rest of the population there are times when I do feel more vulnerable than others.

Just this week I was discussing vulnerability with my mother. I was very sick that day and had to resort to using my oxygen concentrator to help me breath. I had woken up feeling pretty rough and slowly over the course of two hours I developed awful central chest pain and despite clearly being able to breathe whenever I took a breath, the breath felt inadequate. It’s a hard sensation to describe, you are breathing because if you weren’t you would rapidly fall into unconsciousness however you can’t take a deep enough breath to deliver the oxygen you need. The sensation got worse and worse and I finally at 5:30am admit defeat, take some Mestinon and put the oxygen on. Using both I started to feel better within half an hour as long as I didn’t try to move around. As soon as I moved / stood up I felt dizzy and my heart raced.

I was alone and feeling I hate to admit it vulnerable. I could have done with having hubby home from work to look after me but he had to take time off the previous week to care for me and we really can’t afford to lose his wages. It is horrible to feel so ill and be alone. I try to put a brave face on it the best that I can, this year has been a very bad year for me health wise and I really can’t wait for 2014 to be over. Perhaps I will have more luck with 2015.

In my head I feel as invincible as I did when I was 18, in reality I have had to accept my status as being amongst those most vulnerable in society. It sucks.