Thursday 25 December 2014

Merry Christmas

As it is December 25th - Christmas day there is no blog post today. 

I am surrounded by the ones I love, eating far too much and having a drink or two. I hope you are all as lucky as I am in that you spend the day with those you love and that love you unconditionally in return.

I wish you all a Merry Christmas and would like to thank you all for your continued support of my blog.

There are now just a few days left in which my blog can receive your endorsements for the Wego Health Activist Blog Award. Please just follow the link if you would like to add your endorsement. 

Thank you and have a great Christmas!

Rach x

Thursday 18 December 2014

Acute Urinary Retention .....again.......

So just when I thought my health was settling down again after being attacked by a nasty virus, I managed to go into acute urinary retention again this week. Oh the joy!

On  the evening Wednesday 10th December I noticed ( well I couldn't fail to notice) I had a lot of pain in my abdomen. It was one of those pains that you know you have had before but you just can't place it. I ran through the list of usual suspects adhesion's, menstrual cramps etc but nothing fitted the bill. All day I had been having problems urinating but I just didn't realise that this was the source of the pain.

I spent Wednesday evening covered in hot water bottles. My back ached, my abdomen hurt and I was in an evil mood. I am usually quite a relaxed laid back person, so this change in mood was quite unusual. Normally when I am in pain I go very quiet and withdrawn yet with acute urinary retention I become the devil incarnate. I snapped at both hubby and the three dogs. Eventually took myself up to bed so that I could try to get rid of this awful pain and mood.

Thursday morning things were much worse. I could still urinate but it was just a trickle and I wasn't emptying my bladder. I needed to really concentrate on the procedure - something that should just happen and I was having to push (almost like having a baby) to get anything to come out. After a few hours of this I was completely exhausted. As I had woken up at my usual time of 3am - that's a surprise, I rang the doctor's surgery the minute it opened at 8am. Unfortunately the receptionist wasn't one that I normally deal with and was very annoying. She may not have been irritating under normal circumstances but it took all my self-control not to unleash my pent-up fury on her.

 After immediately introducing myself as Rachel Morris, I  asked very politely despite the rage bubbling under the surface if I could speak to my own GP rather than the duty Dr as my medical history is very complicated. The duty doctor was a locum. At the time I believed I was suffering from a UTI not AUR, so even though it was a simple infection it is not something I would have asked a duty doctor to deal with. Not only is the duty doctor dealing with calls like mine he is also seeing patients. I needed someone who knew my complex medical history. I tried to explain this to the receptionist but it seemed we were in a "computer says no" situation.

To give him his due the duty doctor rang me back within 30 minutes. I have previously had to wait hours for such a call. However I am never straight forward. UTI's tend to have the textbook symptoms of foul-smelling urine and burning when urinating. I have never, not even when I have been hospitalised for a kidney infection had foul-smelling urine or discomfort on urinating. You see my body just doesn't do text-book. My urine sample I had produced because I knew the duty doctor would insist on testing it before giving me antibiotics was slightly cloudy and was an absolute nightmare to gather. The doctor was very nice but clueless when it came to Ehlers Danlos Syndrome and Dysautonomia and I wasn't in the right mind frame to use this as a teaching opportunity.

Fast forward a few hours and the pain in my kidneys / bladder is much worse. It's now a 9 out of 10 on the pain scale. I am unable to produce any urine when I try to go, so things are pretty dire. Hubby was working a late night, as he has taken so much time off for me this year and practically zero time off for sickness himself, I really didn't want him taking the day off. So I pretended everything was ok in the hope that it would be. That backfired spectacularly when I had to ring him just as he had just pulled into the car park at work and tell him to turn the car around.

Before ringing hubby I had rung the doctors so it was all systems go. On my notes it is written that if I am in urinary retention the district nurses have to be called immediately so that they can come to fit a catheter, to avoid having to go to hospital. There were no questions asked as this plan was put in place after the events in June, as if you have gone into AUR once you will more than likely do it again. I had been lucky and managed just under 6 months.

Within 5 minutes the locum doctor who had been a bit of a nightmare earlier rang. He told me he had called the district nurses and they would be coming to me this afternoon. He also gave me a 7 day course of antibiotics. Now normally patients are restricted to a 3 day course. This is never enough for me and I end up having to battle for a 5 day course. A 3 day course just means that the infection won't clear and I will be contacting the doctor again. So despite my confused state it was in shock to learn there would be no battle.

It took over 3 hours for the District Nurses to arrive (not their fault as they have many patients to see and I was an emergency squeezed onto their list). In that time my mental state started to deteriorate. I was sleeping because that was the only way I could escape the pain but on waking I was terribly confused. By the time the nurses arrived I hadn't urinated for 4 hours, not even a dribble despite drinking and self medicating with buscopan. I was so relieved when they walked into my bedroom I could have cried.

Having a catheter fitted means a complete loss of dignity with someone rummaging around in your lady parts, whilst they play hunt the urethra. It is very easy to insert the catheter into the vaginal canal rather than the urethra so hence the rummaging. As I have said on other blog posts I am an intensely private person when it comes to my body. I never flash the flesh and am not comfortable parading around in a swimsuit, let alone having two strangers messing about with my privates. The nurses were lovely at no point did they make me feel uncomfortable and they did everything they could to put me at my ease.

During the catheter insertion I kept getting the giggles as every time the nurse lent over me, my knee hit the iphone in her pocket and it would start playing music. I don't know why it made me laugh so much but it really did. It turned what could have been quite a humiliating experience into a surreal one. Its difficult not to giggle when music is emanating from your nurse.

My previous experience of catheter insertion and removal has been incredibly painful so I was quite hesitant to have it done again. These two knew their catheters and it was completely painless. I was aware that there was a plastic tube going up my urethra but it wasn't agony like it had been in June.

It wasn't plain sailing though once the catheter was in, my bladder valve clamped itself around the tube and refused to release any urine. Much to the consternation of the nurses who had never seen that happen before. Unfortunately I have, it happened when I had the first catheter fitted at home and it happened again in hospital the following evening when a new one was fitted after the first one had blocked. For the next 10 to 15 minutes the nurses and I tried everything to get my bladder to empty. It wasn't playing ball and then out of nowhere I started to get bladder spasms. If you've never had bladder spasms thank your lucky stars. I am good with pain but these little buggers will drop me to my knees in an instant. They also increase in intensity. After much muffled screaming, I begged for the catheter to be taken out. It was removed and I shuffled as fast as I could to the bathroom.

After a bit of hesitancy the valve opened and I did the biggest wee in history. I shouted to the nurses that I was going to be some time, which was met by them with cheers and clapping. As soon as my bladder started to empty the bladder spasms subsided. Both the nurses and I have no idea why after not going for hours or releasing any urine into the catheter, my bladder decided to kick into action again. As I have said before though, none of the illnesses I have had in my life have ever followed what is written down in medical textbooks.

The district nurses are contacting my GP to insist that I now get taught how to self catheterise so that I can to avoid needing an indwelling catheter fitted. Self catheterisation would be a good thing to be taught as I am having more and more days where my bladder refuses to empty properly. Hopefully if I was taught this I could avoid going into acute urinary retention and hubby wouldn't have to take emergency leave for this issue.

It took from the Thursday afternoon until the Sunday for my bladder to finally get back to normal. I have been left once again feeling very drained by it all. I have  been sleeping during the day (pretty much unheard of for me unless it's a postprandial episode) and have zero energy. This has left me stressing out something stupid over Christmas which is rapidly approaching. I am trying to calm down a bit and stop making everything into a big deal.

As this is my last blog post before Christmas, I would like to wish you all a Merry Christmas and a Happy 2015.

Thursday 11 December 2014

Hello 3am

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!

Thursday 4 December 2014


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.