PoTs and the Lightning Process

On Tuesday evening whilst having a look at member posts on the group I admin in, a post popped up that deeply concerned me. Now obviously I only have this members say so that this is the case, it may not be true or aspects of it may not be true. However he alleged that a well-known UK doctor that many people pay privately to see after getting nowhere with the NHS when they have PoTs, was singing the praises of a clinical study that was using The lightning Process to essentially treat / cure PoTs. My heart sank and if it is true, it has confirmed a fear that a friend and I have shared for the last 4 years that research into the treatment of PoTS in the Uk was moving towards a more psychological rather than physiological model.

 

I am not naive enough to say that the mind does not play a role in health of course it does. People with depression can manifest very physical symptoms. I have found whilst dealing with anxiety and depression lately that my pain levels are affected. On the days where I am really struggling my pain levels are higher, when I am having a better day my pain levels are back to normal. Clearly mental health and physical health are linked as they are all part of the whole system. However to suggest a process that has many vocal detractors, that has had no properly conducted medical trials that have been peer-reviewed or replicated can treat / cure PoTs is just laughable. It’s like telling a person with terminal cancer that thinking positive thoughts will cure them.

 

Now when you try to research The Lightning Process online it is very hard to actually get any substantial information regarding what the process actually is. I had to search for quite a while last night. Part of the problem is that those that attend the courses ( that retail from between £500 -£750 for a 12 hour course over three days) have to sign (allegedly) a non disclosure document. They are also constantly told during the three-day course that sharing details of the course with others will prevent them from becoming well. The lightning process up until now has mainly been marketed at those with M.E, CFS, Depression, Anxiety, OCD, and Multiple Sclerosis. The main website has fallen foul of the UK Advertising Standards Authority and was forced to remove content that claimed it had cured people of various medical conditions and that it had a success rate of around 90%. From what I have managed to glean from online sources ( which I have provided the links for at the end of this post) it’s mainly based on positive affirmations, cognitive behavioural therapy and emptying your wallet of several hundreds of pounds. It uses a lot of impressive sounding terminology such as neuro-linguistic programming ( a discredited psychological therapy – https://en.wikipedia.org/wiki/Neuro-linguistic_programming, )  neuroplasticity ( changing pathways in the brain) and reducing Allostatic load (stress). It sounds very impressive and when you are desperate, the sum of £500 – £750 doesn’t seem that much if you are going to become well again within three days. I say three days as many of the LP (lightning process) practitioners claim that participants are well within three days.

 

From what I have been able to glean from some very limited research is that it’s all based on breaking the cycle of negative thinking. So at its very basic level its patient blaming, you are sick because you are trapped in a cycle of negative thinking. The negative thinking pattern is causing your physical symptoms – including MS, ME and now PoTs by the look of it, due to the fact you are increasing stress on your body by continually activating your fight or flight response. (http://lightningprocess.com/how-it-works/ ).

 

So for instance if you have the thought “ I feel terrible” you make the hand signal to stop – catch yourself in the thought, you then rephrase it as in “I am doing terrible” therefore making it your choice to be feeling that way ( see the subtle language change that shifts the blame back onto the patient so even if they claim that they don’t blame the patient the subtle change if language makes the patient believe they are responsible for their physical state – what angers me is there would be a national outcry if they tried this shit on with cancer patients). You then tell yourself you have a choice to make you can choose to descend into the pit ( where you allow your physical symptoms to take over your life and continue with the negative thoughts and never get better) or you can choose the life you love. Now what muppet wouldn’t chose the life you love? Who wouldn’t want that in a heartbeat? However if you fail to respond to the process you have effectively chosen to remain in the pit (of despair). You also tell yourself positive affirmations such as “I am strong like a tree” or “ I am a strong genius for choosing the life I love” as you visualise the choice you have made. Sorry only one word for this Psychobabble. Can you understand now why I am concerned that doctors who treat PoTs and Dysautonomia in the UK are singing its praises?

 

A lot of research with PoTs has been around a faulty fight or flight response so I can see why the leap has been made to the lightning process. As many patients with ME ( I hate the term CFS ) have dysautonomia as part of their symptoms, or possibly because many patients who were written off as having M.E but actually have PoTs and EDS (and dubious claims have been made about LP curing M.E), maybe these doctors decided that despite tilt table tests proving PoTs, that somewhere deep within our subconscious we are responsible for causing our own illness through a cycle of negative thinking. If you aren’t offended at any level that it is being suggested that your negative thought patterns are making you sick…….then there really is no hope for you.

 

The LP is so condemning of negative thoughts that to doubt or to criticise the process is seen as a reason why you haven’t been cured. From what I have read those taking part in the process are told to leave their analytical thinking at the door. There is even a suggestion of a screening process before you are allowed to attend the course. The practitioners claim that you have to be ready to attend so this is why they conduct a home study ( a basic telephone interview). Many of those who have spent the money to attend the course have said that the interview is a test to see how compliant you will be. Those who have attended the course and failed to respond to the process are quite often told by others who claim to have been cured, that they didn’t try hard enough, they didn’t implement it properly, they weren’t open minded enough ( whilst typing this I keep wanting to add “ to allow Jesus into your life” because let’s face it, it sounds like a cult. Handing over your money to find enlightenment).

 

Furthermore I have to say on reading some of the testimonials from those who say their illnesses have been cured by LP, sound very much like those people who have been brainwashed in some religious cult. They all say the same thing and usually end with the same accusatory tone that if the process didn’t work for you then you a) didn’t try hard enough b) don’t want to get well. Back to the old blaming the patient game for those of us who chose not to get better.

 

The major problem with the studies that have been conducted is that they have been so informal as to have patients with no official diagnosis provide a self diagnosis ( on it’s on page at the bottom it shows that the patient results are from people who have self diagnosed – so may not actually have the illness they are claiming to have http://lightningprocess.com/research/ ) also due to its technique of only accepting positive affirmations and to condemn anything that could be perceived as negative of course when you question people about how they are doing after spending so much money on what could be bought in the self-help section of a bookshop, they are going to tell you that they have improved. They have been told that to say that they are sick, worse not doing well is not following the process……..how can they say anything other than they have improved or are living the life they love?

 

I am always concerned when I find Doctors are conducting clinical trials on psychological approaches to treat physiological conditions. To me it’s lazy medicine, it’s a chance to shift the focus away from the doctors lack of knowledge / scientific breakthroughs and pushes the fault for the illness or disease back onto the patient. Any doctor that suggests this form of treatment to me will just get a punch on the nose.

Now again for the record I will state it was alleged in a group I am admin in, that a certain UK Doctor who is famous in PoTs circles is singing the praises of a clinical study into using the lightning process to treat / cure PoTS. How true this actually is, I don’t know. So there is no need for panic stations however I would love to hear from anyone in the UK who this treatment has been suggested to (who has PoTs) or who is part of the clinical study.

I also wonder how effective saying stop and repeating positive affirmations will be when my blood pressure drops to 70/40? or when I dislocate a joint if it will pop back in if I tell myself I am strong like a tree?

Resources / Links

Official Lightning process website

https://hubpages.com/health/The-Lightning-Process-Didnt-Work-For-me

https://frownatsmile.wordpress.com/2011/01/06/patient-experiences-of-the-lighting-process-links/

http://forums.phoenixrising.me/index.php?threads/a-balanced-view-of-the-lightning-process.35835/

https://www.buzzfeed.com/tomchivers/inside-the-controversial-therapy-for-chronic-fatigue?utm_term=.bqrkDAmny#.ri1ZbXzVk

http://skepdic.com/lightningprocess.html

Back Pain Sucks

For a very long time I have had problems with my back. They first came to the fore when I was 16 and I started work. The job was physically demanding with lots of bending and lifting heavy items (I worked in retail). It wasn’t long until I started suffering from herniated discs and spending a lot of time at various chiropractor’s. I wasn’t diagnosed with Ehlers Danlos Syndrome (EDS) until I was 37, perhaps if I had received the diagnosis earlier I would have been better able to protect my back.

 

When I first raised the possibility of EDS being the condition that was at the heart of all my joint problems and autonomic nervous system dysfunction I was basically laughed out of the doctor’s office. I was told EDS was so rare that if I had it, I would have been diagnosed in early childhood (this from the same doctors practice that told me the pains in my legs that kept me awake at night were growing pains and I was 26!). The fact that my pulse raised by over 30bpm (and could actually double from 80bpm to 160bpm within seconds of standing) I was told was normal for your pulse to raise on standing.Which let’s be honest is factually correct, it’s just a normal person’s heart rate will rise 15-20bpm on standing and then go back to normal within a few seconds and mine didn’t do that.  I left that doctor’s surgery a few months later and joined another practice, where I would get the support to finally end the mystery of the lifelong pain I had suffered.

 

When I did finally get the diagnosis in May 2011, I was told my spine was the most hypermobile joint of my body. It made sense as out of all the joints in my body my back was causing me the major problems. Whilst working (I left in 2008 medically retired) I found I could not stand in one place for our twice daily meetings without the pain starting immediately. I would be shuffling from foot to foot, finding something to lean up against or on other occasions finding somewhere to sit down. Standing still was agony and it’s very difficult to explain to people that you can’t stand still, when we do it all the time. At this time I was walking our three dogs for over 20 miles each week, walking could be painful when my back was exceptionally bad but I could push through that, the pain was so intense on standing still I would do anything I could to avoid it.

 

Moving is important when you have EDS, if I do not move, change positions every 15 minutes or so my body can become locked in that position. Even a short car journey can leave me being unable to stand up straight. Spending a prolonged amount of time in my wheelchair can leave me being unable to stand or struggle to transfer myself into the car. Last year I spent an awful lot of my time lying down due to the CSF Leak (which by the way touch wood, touch lots of it, looks like it has sealed itself), whilst the lying down relieved the awful headache that accompanied the leak it has destroyed my muscle strength in the rest of my body, particularly my back.

 

For the first time in 12 months I can be upright but due to prolonged bed rest I can’t do the things I want to. My legs shake when I try to stand, my back causes me immense pain when standing. The only way I can explain the feeling is that it feels like I have a lead weight placed on the top of my head and it is crushing my spinal column all the way down to my tail bone. Even walking is painful, I no longer feel like I am walking upright but as if my pelvis may collapse under me along with the bottom half of my spine. My left foot is back to being numb along with parts of my left leg. I haven’t been in this kind of mess with my back since 2014. Then I started to do Pilates to increase my core strength, it worked really well and I dodged the bullet of needing a spinal fusion. I have arthritis in my spine and a flattened disc. It was important to me that I didn’t have the surgery yet because with surgery comes a whole load of other risks.

 

I know I should start doing Pilates again but I am scared. Performing Pilates in 2016 is what “caused” the leak. Well EDS causing weak collagen caused the dura around my spinal cord to tear but I was doing Pilates when it happened. Do I want to exchange the back pain for the return of the head pain and the answer at the moment is no. A few more nights of disturbed sleep will probably change my mind. I wake up in severe pain every morning, due to not moving much whilst I am asleep. My spine seizes up and it becomes very difficult to move. Quite often when I wake my back is in spasm, so I lie there like a turtle stuck on its back until the spasm recedes and I am able to move again. My core strength has gone completely and this is putting more pressure on my spine. It’s a mess, a painful hot mess.

It seems a very cruel twist of fate that whilst my head pain has gone now that I have self healed my leak, that I am now left with pain in another part of my body. No position is comfortable now, sitting, lying or standing it all hurts. I am back to spending life with a hot water bottle tucked down the back of my trousers or like at the moment sat on my heated throw, temperature set to sear!

 

As always I am trying to push through it, increase my muscle strength so that I can get back to somewhere near my level of normal again. There is no stopping due to pain as there is no comfort in it. My painkillers aren’t touching it, like most people with EDS I soldier on enduring levels of pain that would have others curling up in a ball crying.
Back pain sucks, it really, really sucks.

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!

Physio Update

For those of you who don’t follow on Facebook, plus for those of you who do and want more details I thought I would provide you with an update on how things are going.

I have been religiously performing my physio exercises (Pilate’s based) for over 5 weeks now. Last week I had my first follow-up appointment and Kate was impressed. I have mastered the technique of keeping my pelvis still whilst carrying out the exercises, so much so Kate my physiotherapist believes I could have a tray full of drinks on my abdomen and not spill a drop! I had been secretly fretting that I hadn’t been performing them correctly – you know me I like to worry about the smallest of things, so it was good to know that I had getting it right.

The difference in my back pain has been phenomenal. Before starting physiotherapy and seeing the spinal surgeon I had been confined to bed for weeks due to the pain. Even in bed I couldn’t get comfortable. All I could do was apply hot water bottles and take copious amounts of pain medication. I was thoroughly miserable and there were  more and more things I was simply unable to do due to the pain. 

I am probably one of those most sceptical people you could ever meet in regards to physiotherapy. I have seen physios on and off for years, only two of them have been half way decent and this was years before I had the diagnosis of Ehlers Danlos Syndrome. 

Other than the two lady Physios who in the past treated my severely sprained ankle and a case of Plantar Fasciitis in both feet, my experience of physiotherapists hasn’t been great. One was so bad in 2011 I just stopped attending. She claimed to have specialist knowledge of EDS, that may have been the case but she had no knowledge of Dysautonomia and what she was asking me to do was positively dangerous. Asking someone who regularly blacks out due to standing to increase the amount they walk around by 10% every week clearly shows either a) she doesn’t understand dysautonomia, b) doesn’t believe that I would faint, c) simply doesn’t care and uses a one size fits all approach or d) does not have the specialist knowledge she claimed to have because walking causes me such a significant amount of pain . My gp actually tried to refer me back to her this year when I told him I was having private physio. I told him exactly what I thought of her methods and he replied “That’s a no then?”.

Kate has been honest from the start and said she knew very little about Ehlers Danlos Syndrome or Dysautonomia and would be led by me, she would conduct research to find out the best way to treat me. However I having heard all that guff before I didn’t really believe her and left the first session thinking I would give the exercises a go but wasn’t expecting any massive improvements.

By the time my second appointment came around last week the results were quite  astonishing. I really wish that I had taken measurements of my stomach before commencing the exercises as my tummy is now the flattest it has been in years. However that is just cosmetic, the results on the back pain front have been amazing. Now my back pain has not disappeared completely, nor have the muscle spasms but now instead of my back being sore for days on end the pain just lasts a few hours. The spasms can last anything from a few minutes to an hour or so which is a massive improvement because on bad days all that was needed to start a spasm was for me to move my arms above waist height. I still can’t lift anything heavier than a cup of tea without landing myself in trouble and I still have to be very careful how I move but it is still an enormous improvement. I feel like I am getting some of my life back now that the pain has reduced. I had no idea how badly the pain was affecting me psychologically.

Initially when the back pain started to ease, it happened at around week two, I just assumed I was coming out of a flare up. Once I got to week four and the improvement had been sustained I had to admit that the physio was working. Hubby told me my posture was also much improved and said “You aren’t moaning as much about your back” meant in a loving and kind way I am sure! I do find the exercises demanding even though they are below what would even be classed a beginners level of Pilate’s and they are mentally tiring as well. It is all about control, as anyone who has EDS will tell you floppy bodies are very hard to control. I need to have complete quiet whilst completing my exercises as I need to keep focused on what I am doing to ensure I perform them accurately.

Last week the physio session was very painful. Kate informed me that between our sessions she had been researching EDS and Dysautonomia and had found some more exercises she wanted me to try. However before showing her my exercise technique she wanted to massage my back and try to get the muscles on the left side of my spine more relaxed. When a physio says massage from previous experience I know its going to hurt but I also know afterwards my back is going to feel wonderfully loose. Kate had been observing my gait when I came in for appointments and could see I was holding myself in such a way that was causing a lot of tension down the left hand side of my body. She must have worked on my back for a good 30 minutes. There were some sections such as my thoracic spine and the base of my neck that were incredibly painful. The muscles did seem loser afterwards but the following day the pain in my thoracic spine was very intense and took hours to get under control.

Kate was happy with my technique when I performed the exercises and I told her how much I had enjoyed doing them. She then started showing me the next 4 exercises she wanted to introduce. Unfortunately one has had to be adapted again to below a beginners level simply because I don’t have the strength to be able to perform the exercise safely. Like many people with EDS I have weak muscles, I can not perform any exercise where both legs are lifted at the same time. I struggle with lifting one leg out straight from the knee as my technique just collapses if I don’t keep reminding myself to elevate my leg. It is frustrating for me when I think back to how fit I was and how much walking I used to do to now have so little strength in my legs. Even now after 4-5 weeks of performing the exercises I can’t increase the number of repetitions due to their weakness.

One of the exercises I have been doing since my last appointment has been to increase the mobility in my thoracic spine. I know that sounds crazy with having EDS you would think that I would be floppy and bendy all over. Kate thinks that from years of my body naturally trying to protect myself this part of my spine has become stiff which then leads to pain and the vicious cycle starts. You don’t move due to pain either consciously or subconsciously and then when you do move it is more painful. Completing this exercise has led to more pain in this area, it’s not horrific but I am constantly aware that it is there and have been having to resort to hot water bottle again. It is a little disappointing and you start to wonder if you are creating more problems. I know the muscles and joints will be sore from not having moved properly but how sore is a “good” sore and when does it become a warning sign? My questions will be answered this afternoon and I will continue with my blog post then….. 

I was very sore after my appointment yesterday, not only did Kate perform very small and gentle manipulations on my spine but she also deep a deep muscle massage on it. This was painful especially on the right side of my neck as I shrieked Kate said “You’re right-handed aren’t you?” To which I squeaked “yes” in reply. I could feel how very tense that side of my neck was it must have felt like a sheet of steel under her fingertips. I always find the process of massage quite weird as initially it doesn’t hurt too much, then the pain increases dramatically and then magically as the muscle finally admits defeat it relaxes and the pain is gone.  You can feel the way the muscle moves under her fingertips has changed because there is no more resistance its bizarre. Not enjoyable but I always feel better afterwards.

I only had a 30 minute appointment yesterday and the manipulations and massage took up most of that. Kate said I had tolerated much more than I had the week before which she was amazed at. What really shocked her was the complete change in my posture. She said my shoulders are not rounded forward anymore when I sit, I am walking better and my overall posture is now brilliant. She has found the speed in which it has happened remarkable. She confided to me that many of her patients take 3 to 4 sessions before they understand the mind-body connection needed when performing the Pilate’s exercises. What she means by mind-body connection is the ability to think of a muscle in isolation and move it in a certain way. I was pretty pleased that I was an “A star” patient and had understood from week one how important it was to concentrate on the moves. I think I have my mum to thank for that and my dad. Both my parents were really into Yoga when I was a child and would get both my sister and I involved in their Yoga sessions which always ended with meditation.

I have been adding in some Yoga moves at the end of my home Pilate’s practice purely to try and relax my spine. I have been performing the Cobra and the Cat which helps me remove any tension in my muscles after completing my Physio exercises. When I discussed this with Kate yesterday she said “where do you know about those moves? Because they are used in Pilate’s” So I told her about my parents Yoga sessions and that I had done Yoga as a child. I think initially she had been worried that I had looked these up on the Internet and thrown them into my routine. Now she is aware of my Yoga family history as it were she is happy I am using the correct technique. She has already worked out my personality is very “Boom and Bust” meaning I push myself until I collapse, hence she wants to make sure I am doing everything very slowly and not jeopardising my health.

When I was fit and well I did exercise (again in a boom and bust way, which probably sped up my eventual collapse on 31st May 2008) but I found floor work  like stomach crunches etc incredibly boring. I liked bouncing around doing aerobics or walking the dogs. I joined a gym many, many moons ago and found the machines mind numbing. I have never really liked any exercise where I wasn’t in constant motion. So I am bemused that now I am doing what I class as floor work (Pilate’s) I am really enjoying it. I like the fact it is mentally challenging and time to focus on myself. I am loving the results less pain and a trimmer figure. 

It’s not a cure for Ehlers Danlos Syndrome, I am still having frequent dislocations and hip pain, nor is it a cure for Dysautonomia, this morning I have had several mini blackouts and my heart is racing. It is just really nice after years of not being able to do things that I have found something that I can do which is safe. There is no risk of me fainting as I am lying down (well when I say no it should have been phrased there is a reduced risk). Also the fact I have a very sturdy pine coffee table next to where I complete my exercises means I can crawl over and get myself up off the floor when I finish my morning routine as I call it now.

I know Pilate’s is not suitable for everyone and it certainly should not be attempted unsupervised for those of us with hereditary connective tissue disorders where the risk of dislocation is high. I am just extremely lucky to have found a Physio who is willing to learn about EDS and Dysautonomia, who will adjust exercises when she sees I can not complete them properly rather than blunder on and make me feel like a failure like physios have done previously. I know that she is just a phone call away should I run into trouble and my calls will be returned. Most of all I am enjoying myself, which when activities are limited is an absolute boon. 

My visit to the Neurosurgeon

A week or so ago I saw a neurosurgeon regarding the awful pain my back is causing me that also radiates into my legs on a bad day. I decided to pay and see him privately so I avoided the obligatory physio sessions that you have to have on the NHS before you get anywhere near a neurosurgeon.


My back has caused me problems all my life. Since the age of 16 I have herniated discs. I had to sit my a-levels wearing a soft collar because the week before the exams started I had to push my broken down car out of the way of traffic. Whilst pushing the car I slipped and that was all that was needed to provide me with a few weeks of horrendous pain. Not great when all of the exams were at least 2 hours long and would be sat at a desk. My doctor at the time provided the exam boards with a note to give me special consideration as I was answering questions through a haze of painkilling medications and I was also allowed to be seated at the back so that at regular intervals I could get up and move around without disturbing the other students.


In 1999 I injured my back severely during a cool down after an exercise class. Again I had herniated a disc and was in severe pain for several weeks. Unfortunately I worked for probably the most unsympathetic boss ever who despite being informed of my injury still expected me to charge around here there and everywhere with gusto. 


This back injury had lasting effects – the side of my left foot went numb and from then on I have never been able to ride a bike without my nether regions going numb. Thats probably too much information for some of you but I like to be completely honest. When I saw a gp regarding the bike riding issues I was laughed out of the surgery. I recently discussed this with my current gp, one of the good guys and he was flabbergasted that such an issue would be treated in this manner. He had no issue at all sending me for a private referral and understood my reluctance to be treated by the same physio I had a few years earlier, who claimed to be a specialist with EDS but had no understanding of autonomic nervous system issues.


I had to pay £185 for the privilege of seeing my neurosurgeon, which in the world of private appointments is small change. The most I have ever paid was £430 for a private MRI and the most I have spent on a private consultant is £300. My eyes are watering as I tot up the amount I have spent outside the NHS since 2007 trying to find answers for my health issues. If only I had known I would find my own answers through Google! However it was still a battle trying to get referred for the appropriate tests on the NHS.


The neurosurgeon I saw works out of a tiny clinic in a village less than 15 minutes away from where we live. Travel is a nightmare for me so to avoid having to go into the city was a bonus. Parking was easy unlike the large hospital where if you arrive after 9am your chances of getting a disabled parking spot are virtually zero.


The Neurosurgeon greeted us at reception, he seemed very hands on unlike all the other consultants I have seen either on the NHS. All the other consultants I have seen regardless of who they work for seem to send someone else out to fetch their patients. My NHS hospital consultant always comes out and gets me, I find that is a much more approachable way of doing things instead of immediately creating a barrier between patient and doctor. It was a long walk between reception and his office so I was immediately regretting using crutches instead of my wheelchair. The building itself had seemed quite small on the outside, inside however it was labyrinth like.


We reached a tiny little room at the end of a long corridor, where immediately the doctor took our coats and hung them up on the back of the door. Inside was a desk 2 chairs and an examination bed and the obligatory model of the human spine! 


It was nice to know that the doctor knew my own gp on a personal level and he also had the same air of familiarity about him. I was asked the question that irritates me the most “do you work?” and I explained that I hadn’t since 2008 and the reasons why. For more info on my feelings related to that question please go to the blog post “Do you work?” at blogger or WordPress . 


We then had a quick run through of my symptoms and I was asked to gauge out of 100 my back pain assigning one percentage to my leg pain and one percentage to my back pain. Initially due to my issue with numbers in general due to my dyscalculia I didnt get what he meant. Which made me look a wee bit silly. So bless him he explained it in a clearer way for me. “Eureka” I’ve got it! I explained the majority of my pain was felt in my legs I assigned 70% to this and then gave the remaining 30% to my back. Now although I wrote in my post about B12 deficiency WordPress / Blogger that my leg pain reduced after my first B12 injection it hasnt gone and on a bad day it is still unbearable. The bad days have no correlation to my loading doses and my left foot is still numb. I know its early days with the B12 treatment as you continue reading you will understand that there is an issue with my back and that is causing some of the pain in my legs.


Once he had gone through the various questions he needed to ask me I had to be examined. Luckily it was just a case of removing my shoes and my top not exactly a comfortable experience. He asked me to point on my spine where I felt the pain. He then poked and prodded my back asking “does this hurt?” as I squealed in pain and tried to peel myself from the ceiling. He then asked me to bend forward and touch my toes. Now looks can be deceiving, I am not the trimmest of specimens and logic would say I would be lucky to be able to reach my knees. However due to the Ehlers Danlos Syndrome I placed the palms of my hands flat on the floor. The dr responded with “blimey you are bendy!”


I am sure many doctors see the diagnosis of EDS and don’t quite believe how flexible we are, especially if like me you are a little on the large side. I am incredibly flexible and my back is probably the bendiest bit which is why it gives me the most trouble. He then took me through the Beighton Scale, almost as if to re-confirm the diagnosis. As I know what the scale is I threw in a few extras for free just to freak him out! My Beighton scale has been upped now from a 7/9 to a 9/9 as previous doctors didnt think my elbows were hypermobile. This doctor did but it just goes to show how subjective the scale is and how it should really be measured with instruments rather than the naked eye.


Having “proved” once again that I do have EDS I was then made to lie on the examination couch. I had to do various exercises like push his hand away with my big toe and then with my feet. All went really well until I had to elevate my legs. The right one went up so far and so quickly if I had not been careful I could have bashed myself in the face. Its not something I ever do at home so I wasn’t expecting the left leg to be any different. Bizarrely I only managed to lift it a little before it became stuck and would move no further. The doctor must’ve seen the look on my face because he asked if I was in pain. The answer was no, my face was displaying sheer panic. It just wouldn’t move any further and was stuck. It caused no pain at all. Its very hard when you are used to your limbs being elastic and they suddenly aren’t the same anymore.


Examination complete he asked me to get off the examination couch and get dressed. Thats where the fun started! When I get up from a lying position I have always found it easier to roll onto my side and lift myself up. Only my back was having none of it and my arms werent much use either. I lay their stranded like a beached whale. He offered to help but I declined embarrassed that I couldn’t do the simple task of sitting up. After what seemed like an eternity I made it to a seated position. This was still too quick for my body and I ended up having a pre-syncopal episode. 

Once I finally made it back to the chair he took out the model of the spine and went through what he believed was wrong. Apparently I am showing the classic signs of Facet joint arthritis. At 40 I am a little young to have this condition (its mainly found in people over 45 who have been athletes, dancers or done hard manual labour) but EDS can cause early onset arthritis. I suspect I have a touch of arthritis in my fingers also as they can be very stiff and painful on waking. He then went through my back / leg symptoms and said they were all pointing to a nerve root compression at S1. The fact I couldn’t lift my leg was a textbook symptom. Luckily all my reflexes are intact, my mum who has the same problems as me is much worse having lost the reflexes in her leg and therefore requiring extensive surgery.

He then went through the various treatment options however we will know more when I have an MRI scan later this week. I will be booking an appointment to see him once its been done, thats another £130 privately. I could be waiting several months on the NHS for an appointment to do exactly the same thing.He will then go through the results of the MRI scan with me.

Its really stupid but I am terrified that the MRI will show nothing at all and I will be accused of making up all my symptoms. Its a pretty expensive way of getting attention but thats not what is going on. My phobia about doctors is just kicking in and although I know I am showing textbook symptoms I can’t shake the element of doubt rattling around my head.

My options are depending on how bad the damage is  are injections or a nerve root decompression operation. The nerve root may need to be decompressed on both sides of the vertebrae as I am developing symptoms on my right side also when its a bad day. The doctor informed me an operation like this doesn’t come without risks and he would go through them at a later date. He is sure however should I have an operation the pain will be gone when I come around from the general anaesthetic.

My operation would be carried out on the NHS, I just don’t have the funds to pay for it myself. The surgeon also works for the NHS and would do the operation himself rather than pass me off to another surgeon. I told him if I had the operation he would be the only one doing it. I asked my gp when he referred me to this surgeon who he would have treat him. He answered this neurosurgeon, I trust my gp’s judgement.

At the end of my appointment the Neurosurgeon warned me that after the examination I would be in pain, he wasn’t wrong. I ended up having a flare that lasted three days (where the pain was close to being a 10/10 on the pain scale) and it’s taken until today (15 days later) for it to completely settle down. When I say settle down I don’t mean zero pain, I mean a pain that I can deal with and that goes away with additional painkillers should I need them.

Since the examination I have found that there are now things that are acting as triggers and exacerbating the pain. Bending forward is causing a lot of back pain and I am locking up more frequently when I try to straighten up. Maybe its just because I am more aware of the issues with my back where as before I adopted the head in the sand technique who knows?

Of course I will update you once I have had the scan…….

Willow keeping company whilst I recovered in bed after the appointment.

 

Emergency Admission / Weekend from hell part two

*WARNING*

 

As with part one of this post I am going to warn you now, it will contain graphic content, if your eating stop reading now, if you have easily offended sensibilities this post is not for you. The language contained in the post will be a little fruity, think drunken sailor on crack! I apologise in advance but this is going to be a “real life” post and there will be no fluffy bunnies or unicorns featured within it. This is what its like to be chronically ill.


If you want to know what an absolute bitch of disorder EDS can be and you aren’t afraid of the mention of lady parts continue. 

 

 

 

*    *    *    *

 

After the doctor had finally cannulated me and got the blood she needed she got the nurse to draw up three different drugs. The first was Zofran (generic name Ondansetron) an anti sickness medication, the second was oramorph and the third was buscopan. As soon as the nurse started to inject the Zofran my arm was on fire. I have had IV meds that had stung / burned before but she had given no warning this would do so. As she then put the buscopan in the burning got even worse and I started to scratch at my arm. As she got halfway through administering the morphine I told her to stop. She told me “morphine can make you itchy” I told her “I take morphine regularly but it doesn’t make my arm itch, it makes my legs and abdomen itch”. She then said she would flush the cannula to see if that helped at all, it made it worse and I begged her to stop. As I looked at my arm every vein had turned bright red and the underside of my arm from the wrist to above the elbow looked like it had been scalded by boiling water.


The nurse promptly checked my blood pressure which was fine (actually a little high for me at 114/80 but I was in pain) and then left the room for 20 minutes. Now as I always say I am not a medical expert but if someone is having a violent reaction to a medication and has nearly been in anaphylaxis before, would the “safe” thing to do be to leave them in a room with the door shut and unable to call for help if the reaction got worse? My answer would be no but apparently thats a perfectly safe thing to do at my local hospital.


I kept setting off alarms on the monitoring equipment, when I am very tired or in pain I stop taking breaths. Its not deliberate but its like my body forgets to breathe. My oxygen saturation did not drop below 100% (which as a smoker and sometimes heavy smoker I was pleased about) but I was now going for over a minute without taking a breath, the alarm sounds at under 8 breaths a minute. This isn’t the first time I have set monitoring equipment off in this department and every time it provokes no response from the medical staff. Thats a little disconcerting when you are in the middle of an allergic reaction!


Eventually the nurse came back into the room with a porter and I was informed I was being moved up to a ward. The nurse that had been “treating” me, seemed to have a compulsion to pull on the catheter tubing at every available opportunity, despite me telling her that this really hurt.


I have no pain at all when a catheter is fitted (which is odd as on some websites the pain associated with this is on a level with a lumbar puncture). My pain starts as soon as the balloon which keeps the catheter in place is inflated. After that for about 12 hours I can’t sit down without pain and any slight tug or knock of the tube is excruciating. Despite telling the nurse this it seemed to be her mission to mess about with the tubing at every opportunity. So yet again I was in agony due to someone else either a) disbelieving what I was telling them or b) she just didn’t care.


I thought I would be heading for EMU (emergency Medical Unit) which is an awful ward to be on. The nurses are terrible on this ward, having been on it on several occasions, I can tell you a crash course in empathy, compassion and the basics of nursing is needed. Instead I was going onto a “proper” ward with proper nurses you know the caring kind that Florence herself would be proud of.


I was seen by the nurse on this ward within minutes of being admitted. I am really sorry but I can’t remember her name. She was a bubbly blonde woman with a lovely brummie accent. She did everything properly, I was asked about my mobility, how they could help me (with toileting, washing and dressing), who my next of kin was, religion, diet and how my bowels worked etc. This is how it is supposed to be done, by someone who asks probing questions and assumes nothing. This nurse and the other nurses and healthcare assistants on this ward are a credit to the hospital and if I am honest had I not had that kind of nursing care I would have discharged myself.


I probably sound like a stickler for rules and possibly a person with aspergers tendencies. I am not that person, I do however get infuriated by laziness and assumptions. Laziness and assumptions don’t provide good medical care. As a medical professional you need to listen and understand your patient. If they don’t do that I start to lose faith in their abilities. A patient is a person, not a condition or a plaything for you to practice your skills on. Treat me with courtesy, respect and that I am not an idiot and it will go a long way. Treat me as if I am below average intelligence and without respect and you will have a hostile patient on your hands. Its a shame more medical professionals don’t apply that approach, yes they have medical knowledge but learning about a disease or condition does not make you the expert. Living with it 24/7 does.


At around 1am I saw a student doctor. Now normally I enjoy interacting with student doctors, they are young, enthusiastic and eager to absorb any information they can about a condition they haven’t come across before. This one seemed to have a language processing deficit, not ideal. Again despite telling her the catheter had only been fitted the day before, the conversation seemed to be a little like the film groundhog day. I dont know why it was impossible to believe that it had been fitted on Friday, it was now the early hours of Sunday. But she was insistent the catheter had been in for a week. I wish that I had brought in the paperwork from the district nurse when I set off to hospital as clearly as a patient I was unable to distinguish 24 hours from a week. Maybe she had the assumption that as I used a wheelchair my disability was mental rather than physical?


As a good patient and a professional sick person I had brought all my medication with me. Yet despite all this the student doctor added medications that I don’t take to my drug chart and got the dosages incorrect. Despite having all the pharmacy labels on them. How that is possible? I am at a loss to understand.


She was very through in her exam, my abdomen was palpated and my chest was listened to. She then did a basic neurological exam, checking the power in my legs and my reflexes. It startled her that my left leg was cold whilst my right leg was hot. Again having repeatedly told them that my autonomic nervous system is screwed, I couldn’t understand why this would be so “amazing”. 

 

I am interested in medicine I always have been. Plus without this basic understanding I would never have discovered what was wrong with me. However she nearly died of shock when I told her that I knew she was checking for cauda-equina-syndrome. I knew that this check would culminate with a finger being inserted into my rectum. Having had numerous operations on my bowels no hospital visit would be complete without this examination!


She disappeared outside the curtain and then returned with a nurse. I asked “are you selling tickets?” the nurse laughed but the joke seemed lost on the doctor. As I assumed the finger up your bottom position, the nurse tried to explain what was happening, I interrupted explaining this wasn’t the first time I had been subjected to this examination. The weirdest thing about it was you have to grab the inserted finger with the muscles of your anus. It takes a little bit of thinking about as its not something one does on a regular basis. I passed with flying colours, although I am a little unsure if thats something to boast about?

 

Doctors that treat me are always obsessed about constipation due to the opiates I take. I rarely suffer from constipation I can open my bowels up to four times a day, despite all the morphine I take. I am coming to the conclusion that this annoys them as I should be on a diet of laxatives like most people would be when they take opiates. The only thing that does make me constipated is codeine.

 

 As she whipped her finger out of my rectum she said ” Your rectum is completely empty, you’re not constipated”. Now having informed the doctor of the fact I don’t suffer with constipation, this wasn’t a surprise to me. My bowels are so regular you could set your watch by them. Sometimes like on early Saturday morning when my bowel had switched off on the Friday as my bladder had done, it went into freak operating mode and I was stuck on the toilet for 90 minutes. Again the doctor wouldn’t believe me that I didn’t have diarrhea, it was normal stuff. I wanted to place a bet with her that at 8am I would have a normal poo but as she hadn’t listened to anything I had said previously it would have been a wasted effort. And yes bang on 8am I had a poo (in case you were wondering!).

 

As this student doctor was on a surgical rotation I expected her to have a little knowledge about surgery – silly me. She had clearly read my notes as when she saw the scar on my stomach she asked if that was from the intussusception at age 3. I told her no, that was a scar from having adhesions removed in 1998 and subsequent exploratory operations, the last one being in 2002. She then spent a couple of minutes looking at my abdomen. She said to me “I can’t see any scars form laparoscopic surgery”. 

 

Despite it being gone 1am, I knew I was dealing with an idiot (or if I wasnt writing a blog a FW – you work out that abbreviation!). Surgery increases your risk of adhesions by about 50%, I had already told her I had adhesions removed in 1998 – so thats 2 surgeries. Once you have bad adhesions, as I do, laparoscopic surgery isn’t possible. A student on a surgical rotation should know this, its a basic piece of knowledge. Plus if she had felt my scar and  around belly button you can actually feel the thickening of the tissue and the bottom of my scar is tethered meaning it goes through the skin and has stuck to the abdominal wall. Maybe it was her first day but I wasn’t the one pretending to be the expert. Which is what annoys me about some doctors, they poo poo (pardon the pun!)  what you tell them as they can’t stand it when the gaping holes in their knowledge are exposed.

 


As we were going through my medications the doctor asked me if I was allergic to IV morphine. I nearly choked, I asked her why she had said that, apparently the nurse from A & E had written in my notes I was allergic to it. I angrily pointed out that as I had been taking morphine for two years ( shoved the packet under her nose) and buscopan all day (that packed was waved at her also) didn’t she find it more likely that the reaction I had suffered would have come from an IV medication that I had never had before? To me that seems logical but apparently not for this doctor. I asked her to write the name of the anti sickness medication down to ensure that I am never given it again, which she did.


The ward was noisy and sleep was elusive. I came to the conclusion that I would have had more sleep had I curled up on the floor of Paddington station. Patients  were in and out all night. Doctors were taking medical histories at 3 in the morning. It was a hive of activity but a place of sleep it was not.


Overnight I had drained 1800ml into the catheter bag, another impressive feat. I had less pain, no spasms and was in general feeling a lot better. When I am feeling better I want to go home and not linger. 


As no one had secured my medications in the bedside locker, I self medicated my morning tablets. I had already missed my evening ones and due to that my back was throwing its usual hissy fit when it comes into contact with a hospital mattress. Yes you heard right on this ward controlled drugs were not confiscated on admission. On this ward the nurses gave me the “self medicating” disclaimer form to sign and then put my medications into a locker. They checked through my drug chart to ensure that I had taken everything and thats when we discovered the student doctor had entered medications on my chart that I didn’t take. I explained to the nurse the error, it didn’t seem to come as a surprise to her, which was worrying. She asked me what doctor I had seen “was it the one with the red hair?” Obviously her reputation precedes her.


Breakfast was served just after 8am and as it was the first thing I had eaten in close to 24 hours I then promptly fell asleep due to a post prandial hypotension episode. I was woken up by the sound of voices, my case was being discussed whilst I slept. As a patient it was quite clear my actual presence wasn’t necessary. 


On seeing that I had come to the Surgeon in charge introduced himself. Then the idiot student doctor continued her patient presentation. I watched her and as she said “This patient has been diagnosed with Ehlers Danlos syndrome hypermobility type, the patient states she also has autonomic nervous system dysfunction” she paused and rolled her eyes. 


As she was stood to the side of me, I think she thought I couldn’t see what she had just done. I don’t state I have ANS dysfunction my medical records do and the medical tests I have endured prove it. If they don’t believe the diagnosis how on earth can they look after me? This was like a red rag to a bull and I hoisted myself up so that I was no longer lying flat on my back.


The surgeon then said ” right we are white carding you to urology, who you will see tomorrow and then we will go from there”. I then responded with “I am sorry, I am sure you’re a lovely person but I am not staying. I dont play the hospital game of lying around waiting for a department to fit me in. My plan is you take the catheter out, I prove I can urinate and then I go home.”


There was a collective gasp from the junior doctors who had accompanied the surgeon to my bedside. He responded with ” You can’t go home, you are in urinary retention”


Me: ” No you don’t seem to understand me, the catheter is coming out and I am going home”


S: ” You are being stupid, you’ve had two bouts of urinary retention in 48 hours”


To which after being called stupid I said 


” The catheter caused the last bout of urinary retention by causing my bladder to go into spasm. I want it out and I am going home” 


By this point I was incredibly angry at being called stupid, I don’t think a doctor has ever called me stupid before, well not to my face, possibly hidden away in my notes somewhere. Had he actually asked my opinion and explained his position instead of presenting it as a fait accompli I would have listened. But he was an idiot and continued


S :”You’re being stupid, I will let you go home but you have to keep the catheter in”


Me :” No I am going home, you are taking the catheter out and then you are referring me as an outpatient to urology. I don’t do hospitals and I don’t feel safe here” 


S: “You’re being stupid, you won’t be able to urinate once the catheter is removed”


Me: “If the catheter is removed and I can’t urinate, I will stay. If not I am going home.”


At this point the surgeon, who I believe had never had his authority questioned before gave up.


“Get the catheter out and she can go home” He then flounced off taking his minions with him.


I will state for the record here I am not a doctor and I am not suggesting I know better than the doctors caring for me. If you are in acute urinary retention you need medical help and you need it quickly. I take responsibility for my own actions. I strongly urge you to follow your own doctors advice.

 

 

However lets look at the facts 

 

– my bladder was no longer in spasm


– the catheter had drained 1800 mls overnight and was continuing to drain, therefore I was no longer in urinary retention.


– the second bout of urinary retention had been caused by the catheter either a) being blocked or b) the valve at the base of my bladder clamping down on the catheter.


– The student doctor had written my drugs chart incorrectly


-The medical staff had no basic understanding of EDS and the fact my bladder can stretch well beyond the size of most individuals making it floppy when emptied and likely to block the catheter again, leading to more painful spasms which I wanted to avoid.


– I had suffered an allergic reaction to IV Zofran and it had been ignored.


– They wouldn’t believe me when I told them the catheter had only been in since Friday.


– I had been left in excruciating pain for over an hour in A & E. When it was actually a quick fix.


– And the one that sealed the deal, they didn’t believe that my ANS is screwed


Ask yourself if you would feel safe in that environment? Would you want to stay?


I know I am not a medical professional but I knew that there was nothing to be gained from staying in hospital other than back pain.


Within minutes of the doctor leaving my bedside the nurses had removed my cannula and my catheter. As the nurse was removing my catheter she whispered ” I don’t think anyone has ever stood up to him before, well done. You manage your illness brilliantly and we know that you can go home safely. Just promise me if you can’t urinate, you won’t go home”


I solemnly promised her that I would let her know if I couldn’t wee and wouldnt leave the hospital if that was the case. I also promised that If I had any issues at all that I would return. I told her I wasn’t stupid but I wasn’t staying either.


A weaker more vulnerable patient may have been intimidated by the surgeon and his groupies. Unfortunately the older I get the less impressed I am. Having dealt with surgeons before I know that unless they can cut it out and play operation, they rapidly lose interest and then you are palmed off to another ward. Or left without a treatment plan for days on end. I wont play the hospital game anymore. I maybe coming across as  rude or arrogant but I know my body, my body doesn’t follow the rules laid out in medical textbooks and until I meet doctors who actually believe in my illness and have taken the time to educate themselves, I don’t trust them, its as simple as that. To me it would be like treating a diabetic having no knowledge about the disease / condition process. The outcome wouldn’t be good, well my condition is the same.


I did not feel that my condition warranted a hospital stay, most of which would have been massively unproductive as I have since found out my local hospital has no urology cover every other weekend. The earliest I would have been seen was sometime on Monday. At home I can manage my condition and I have a treatment plan as I consulted my gp first thing on Monday morning. Who agreed with my decision to leave – in case you are wondering.

 

I escaped from hospital with the aide of the nurses by 1020am. I didn’t wait for my discharge papers as one of the nurses had warned me they would mess me about producing them. They would either be emailed or sent to my gp. Having been in this situation before I knew it could be 2pm before I received them due to the doctors doing their rounds and writing up any orders for the nurses for all the patients they had seen. 

 

I got a hug and a kiss from the nurse who had been looking after me. I know I wasn’t there to win a popularity contest but I think it speaks volumes when a nurse treats you like this.

 

I have emailed a complaint to my local hospital and they now have 45 days to cover it up,  investigate it.

 

I am home and now living in fear of it happening again. Every time I struggle to urinate or get the burning pain at the top of my pubic bone I wonder if its starting again. Its not a fun way to live.

 

I have included two links below which I have found incredibly useful and they explain a bit about acute urinary retention and the catheterisation process. As acute urinary retention doesn’t happen that often in females (other than post operatively or due to infection) it was difficult to find information relative to me.

 

Thanks for reading.


How a catheter should be inserted, protecting the patients modesty during a deeply invasive procedure

 

The journal article I used on Saturday afternoon so I knew how to treat the initial bladder pain



Emergency admission / weekend from hell part one

I’ve just had the weekend from hell, in a less than great month. 2014 is officially shit. Two bouts of cellulitis (3 if you count the fact the one on my knee came back) and then a rather dramatic Emergency admission to hospital. The last 4 weeks have been far from plain sailing.

 

*WARNING*

 

I am going to warn you now this post will contain graphic content, if your eating stop reading now, if you have easily offended sensibilities this post is not for you. The language contained in the post will be a little fruity, think drunken sailor on crack! I apologise in advance but this is going to be a “real life” post and there will be no fluffy bunnies or unicorns featured within it. This is what its like to be chronically ill.


If you want to know what an absolute bitch of disorder EDS can be and you aren’t afraid of the mention of lady parts continue. 

 

*    *    *    *

 


There has been a joke in our house since 1998 that I can not go through a Football World Cup without an emergency hospital admission. Just as England were putting the final nail in their coffin on Thursday (19th June 2014) I thought I may have actually broken the curse. Then my body went “yeah right” snorted, rolled its eyes and sent me on a journey to pain a level of which I didn’t know existed or that you could live through.


As the football match drew to an end my insides had already been hurting for a few hours. I had a pain low down in my abdomen that felt a bit like period pains. It was burning, uncomfortable and just shouldn’t be happening as I take a contraceptive pill that stops all that nonsense. I did what I always do and tried to ignore it, figuring it would sort itself out.


 By 2:30am Friday morning I was considering calling 999 for an ambulance. I was now blacking out for brief moments with the pain and realising this wasn’t  my period. Had I been fully conscious at this time I would have called 999 but I couldn’t so I lay stranded on the couch in a daze.


I don’t know why it took me so long to work out what was causing the pain. It was the pain itself that was confusing me as it was diffuse and felt like the whole of the inside of my abdomen was on fire and there was a rhythmic quality to it. It wasn’t adhesion pain as that is sharp and colicky. It was the absence of passing urine that alerted me to the fact that my bladder had effectively gone on strike. Not wanting to panic my husband I grabbed a hot water bottle and tried to ride it out. I have suffered short periods of time where my bladder has walked out on me demanding better pay and conditions but it had always seen sense and resumed work without any fuss. My bladder tried in vain to work releasing pitiful amounts of urine but by 7am I had to admit defeat. I woke my husband and told him I needed him to stay home from work because I believed in the next few hours I would be travelling to hospital.


As usual not wanting to go to hospital I used delaying tactics and asked my husband to ring our doctors surgery for a home visit. At 1230pm my gp rang, I explained my symptoms and he asked me how I felt about having a catheter. My response was “I don’t care anymore just stop this pain”. I laugh at this statement now because  a little over 24 hours from that statement I would be enduring the kind of pain where if you told me the only way you could stop it was to kill me, I don’t think I would have given it a second thought.


By 2pm my gp was at my house. I don’t believe he was on the rota for home visits that day, he had cleared a space in his schedule and nipped out to see me. As soon as he walked into my bedroom (I was confined to my bed as I couldn’t walk. My bladder was so distended at this point the pressure made my vagina feel like it was being turned inside out) I burst into tears. Since leaving work I rarely cry (now that speaks volumes doesn’t it?) and I think since 2011 when I first met my gp I’ve cried on him on only one previous occasion. 


He was an angel, he informed me that urinary retention makes you extremely agitated and emotional and that along with the pain in my abdomen I was showing text book symptoms. He rang the district nurse and the conversation went ” I am with Rachel now and she needs a catheter, when can you be with her?”. He was so organised he had spoken to the district nurse already and had her primed and ready to go.


By 2:50pm my shiny new catheter was fitted however relief was not instant. Initially it didn’t drain a thing, the nurse was most perplexed as she had never had that happen before. So she asked me to stand up and take a drink. With that it started draining and although uncomfortable, in the couple of hours after it had been inserted it had drained 2 litres, by morning it had drained over 3.5.


Saturday morning I felt fabulous (compared with the previous day) my fashion forward accessory was working like a dream. I lost count of how much I emptied but it was several more litres. Around 2pm in the afternoon I started to get that familiar burning feeling again in my abdomen. I also noticed that the catheter was no longer draining. As the pain wasn’t bad, just uncomfortable I googled my symptoms. It did indeed appear that my catheter could be blocked or that I was having some bladder spasms. The treatment of these involved opiate pain killers and buscopan ( a muscle relaxant usually used in the UK for the treatment of irritable bowel syndrome) as I had both of these to hand I took some and tried to get some rest.


All afternoon I soldiered on, hubby was working, doing a reduced shift as I didn’t want to be left alone all day dealing with a catheter and not feeling great. He arrived home at 6pm and by then the pain was getting a little unbearable. By this point I had only passed 100ml of urine in six hours and had drunk more than 2 litres. 


I am a great believer in distracting yourself when in pain and trying not to acknowledge it. I don’t like giving into pain as once you do its very hard to get it under control. I had hung on so that hubby could work, now he was home it was like the dam had been breached and I couldn’t keep up the charade any longer. It was getting ridiculous so I rang 111 the number you ring in the UK for out of hours medical help.


That call was useless, despite acknowledging that I was indeed in a lot of pain, I was informed the minor injuries unit doctor didn’t feel confident enough to deal with catheters and the nurses were busy. Whilst speaking to the doctor I broke down and with that the pain increased ten fold. I was told that I would have to make my way to the large hospitals A & E department a 15-20 minutes car ride away. 


At this point I considered looking on YouTube to see if they had a video on removing a foley catheter – thats how much I didn’t want to go to hospital.


I didn’t want to call for an ambulance as I knew my call would be coded as green call, meaning non life threatening and if they were busy I could be waiting 4 hours or more. So some how I made it to our car and we set off. Every bump in the road felt like someone had inserted barbed wire into my nether regions. To the casual observer I probably looked like I was on my way to the maternity hospital with all the puffing and panting I was doing!


Accident and Emergencies  was packed out we couldn’t get parked outside so we had to make use of the drop off zone. Reception has glass in front of the staff and a very high counter. Meaning when sat in my wheelchair I can only see the top of the head of the person sat behind the glass. I asked the receptionist if she could move to the wheelchair access desk as I couldn’t see her and was told ” No the computer isn’t switched on and I can hear you so its ok!” Well it wasn’t ok for me to be shouting at the top of someones head and I will be writing to the CEO of the hospital. 


Whats the point of having a wheelchair access desk if you refuse to use it? Its just a window dressing and apparently as a disabled person I am not supposed to be able to speak for myself or access that department. Wherever possible I speak for myself and to be denied a face to face conversation at your first point of access in hospital is degrading.


I had to wait for about 20 minutes to be triaged. Normally I would say that was ok. A cut hand with pressure applied (as long as its not an arterial bleed) can wait, when your bladder is in spasm and you can’t speak through the pain 20 minutes is an eternity. Especially when you know that you are waiting to be triaged and you will have a longer wait once through into the magical area known as minors or majors.


Once through into minors the luxury of a bed wasn’t forthcoming. I was forced to remain seated in my wheelchair, when I needed to be lying down or curling into a ball. The spasms were gaining in their ferocity and I was forced to sit and watch as 7 nurses and healthcare assistants stand around chatting for 20 minutes under the guise of a “handover” oblivious to my suffering and the woman next to me who in her 70’s had dislocated her shoulder and was screaming in agony. 


Having witnessed her cries go unnoticed I knew shouting and screaming was going to get me no where. I dont tend to shout and scream when I am in pain. So I surprised myself when I began to sob uncontrollably. My body was shaking with the pain and I was beginning to be unable to keep myself in my wheelchair. Even now I don’t know how I remained conscious, I didn’t think it was humanely possible to endure that amount of pain. Even now I am finding it hard to find the words to describe the ferocity and the sheer agony of it.


With the prospect of my pain getting under control seeming hours away, I am not proud but in a moment of sheer desperation I told my husband to tell the nurse that I had bypassed my catheter and was now sitting in a pool of urine. Nothing gets a nurse or healthcare assistant moving like the prospect of having to deal with body fluids. There was a small element of truth to what I said, I was bypassing my catheter but it was more of a dribble than a gush and although my trousers were not wet, my underwear was soaked. Within 2 minutes I was on the unoccupied gurney that stood less than 5 foot away from me. However as I was trying to climb up on it the worst spasm to hit me came and I was shrieking in pain.


To an outsider it must have seemed that the dislocated shoulder lady and I were in competition with each other, as no sooner did I start wailing like a banshee she started as well.


The nurse was talking to me but what she said I had no idea. All I can remember saying to her was “I’ve had a partial bowel obstruction and I can tell you it was a fucking cake walk compared to this”. Which was followed by more shrieks of pain. I was on the gurney for less than 5 minutes when a doctor came in.


For some reason everyone (medical staff wise) kept assuming that I was a long term catheter user. They didn’t seem to understand that it had only been placed the day before. When they did get that I wasn’t a long term user they kept saying it had been in a week. When you are sobbing, screaming and swearing having to keep correcting medical staff because they just won’t listen to you it is not an ideal situation. Its bad enough having to explain my medical condition when I am not in the throes of a bladder spasm but when you are your most vulnerable and your life is in their hands its not reassuring.


I was f’ing and blinding the whole time I spoke to the doctor. I must have seemed like a woman possessed.The doctor explained that they would take the catheter out and put a new one in, which was greeted with my shrieks of “no just take this fucking thing out and let me have a wee (may have said piss can’t remember exactly)”. She explained to me that they had to get the urine out that had accumulated inside me and the only way to do that was to put a new one in. I wasn’t a happy camper, it didn’t seem logical that you would replace the thing that was causing so much pain. I acquiesced hoping that this would stop the pain. As the spasm wore off I apologised to the doctor she told me there was no need to apologise, this was an extremely painful condition and if she looked up bladder spasms and urinary retention in a medical dictionary my picture would be there. For once in my life I was presenting in a text book way, if I hadn’t been in agony I would have cracked a smile.


Whilst we waited for the treatment room to become free a wave of nausea hit me. I had nothing to be sick in, my husband was standing beside the bed. All I could say was “watch your shoes” as I projectile vomited onto the floor. Hubby and I haven’t stopped laughing about this since it happened. It was bloody awful at the time. As I hadn’t eaten for hours the projectile vomit was pure bile and then I dry heaved for the next few minutes. The dislocated shoulder lady seemed to sense the competition on the noise front and started to scream again. My husband was losing his rag, his wife was in agony, throwing up over the side of the bed and next to us was a lady begging him to get a nurse. It was an awful situation for him to be in. He told her she would have to wait for me to stop being sick before he could help her and get a nurse.


A really lovely nurse, the one that rushed to get me on the gurney and tried to comfort me when I was acting like one of the ladies giving birth on “One born every minute”, popped her head around the curtain. She stroked my shoulder whilst I apologised for the mess on the floor. She assured me that she had seen worse, she knew I was in agony and they would be sorting me out as soon as the room was clear. As I was in between spasms I was able to ask her to help the lady next door out. She was clearly in so much pain, when you watch “24 hours in A & E”, shoulder dislocations are identified as extremely painful, people are given morphine and gas and air. They aren’t left in a chair and ignored for over an hour. 


Despite the pain I was in, her cries hurt my soul. Hearing such distress coming from an elderly lady broke my heart when her pain could have been brought under control and she could have waited in relative comfort for her shoulder to be realigned. Whats the point in putting posters up on the walls of A & E departments telling patients to let their nurse know they are in pain, when they are ignored. Its a waste of paper and a waste of the blu tack sticking it to the wall. It wins the emptiest gesture possible award.


Welcome to David Camerons vision of the NHS, where old ladies scream in pain because there are too few doctors in an accident and emergency department to prescribe morphine.


I was wheeled through into the treatment room and within 10 minutes the old catheter was out and a new one placed. Only much to everyone’s consternation there was no urine draining into the bag. I wasn’t surprised for a while I have suspected that I suffer from Fowlers Syndrome. My sister suffers with this condition and has just had a sacral nerve stimulator fitted. 


With Fowlers Syndrome the neck / valve of the bladder is too tight and will not relax (as it would do normally) to allow urine to flow from the bladder. Sometimes when you catheterise a patient with Fowler’s syndrome you can place the catheter but then the valve slams shut around the tube so it stops urine flowing and that is exactly what happened to me ( and it had happened to my sister in the past). Unfortunately along with Ehlers Danlos syndrome and Autonomic Nervous system dysfunction the doctor and nurse treating me were completely clueless. As the catheter wasn’t working I was now being admitted under the surgical team. 


Although the doctor never said it, I knew that if the catheter failed to work I was facing an operation to have a suprapubic catheter fitted. I hate it when doctors think you are an idiot. All she would say to me was “well the surgeons deal with catheters” I wanted to say “no they don’t urologists do” but over the years I have found to my cost that doctors don’t like it when you know more than they do. I had already presented them with three medical conditions they had never heard of.


I stood, I drank but the urine never dropped into the bag. I had released all of 100mls and of course that was taken for the obligatory pregnancy test and dipped to check for infection. You know my feelings about pregnancy tests!


With the catheter not working and my admission onto a ward reasonably imminent I was swabbed for c-diff and MRSA again. However this time it was only my nose and throat. I dont understand why I was intimately swabbed on my planned admission and not on this occasion but hey ho. Then the fun and games began with finding a vein to get a cannula in.


I will never understand why doctors or nurses (but not phlebotomists in my experience) don’t believe patients when you tell them your veins are shite. If I am ill my veins will shrink away and be difficult to find. Add in Ehlers Danlos Syndrome and you end up with veins that have the consistency of an elastic band. As the needle approaches them they shift away. Medical professionals that have never come across this then proceed to dig around until they blow the vein or cause such pain that you pull away. Despite me telling the doctor my veins would be hard she gave it a go. I stipulated that she could stick me with the needle as many times as she wanted but she wasn’t to dig around. I also said that there was no shame in calling the vascular access team. In my experience you have to be patient with my veins. You can’t stab at them wildly and expect them to play ball.


Taking this on board she put the tourniquet around my forearm (I am still bruised) made me hang my hand over the side of the bed and she placed a latex glove filled with hot water on the back of my hand. She did listen and I am grateful for that. It took well over 5 minutes to get the needle in, whilst she was doing it she kept saying “does this constitute digging?” as she gently probed the vein. She was very patient and calm whilst she was in fact digging and it didn’t hurt. She got the needle in and then as usual my vein wouldn’t give up any blood. Eventually after re-applying the hot water filled latex blood we had some joy. When she finished she exclaimed “oh my word, I have never seen veins behave like that”. Thats the fun of EDS I told her.


To be continued……..