HRT

 Good god I feel old, as of last Thursday night, I started HRT ( Hormone replacement therapy). I was put on it for a number of reasons but the main one was an attempt to get a handle on my migraines that have just spiralled out of control since March this year. Leaving me some weeks having 3 a week. I was feeling permanently exhausted by it all, some of it was the migraine hangover and the rest was the Sumatriptan that although stops the migraine in its tracks leaves me feeling drowsy for the next 24 hours.

I'm not the youngest person to be put on HRT, I know people who have been placed on it since their 30's due to premature menopause or surgical menopause ( post hysterectomy ) but I am a good 5 years below the national average of the onset of menopause which is 51 in the UK. So whilst I am 46 and amongst the first in my friendship groups to be placed on it, it is making me having to deal with the fact that the first flush of youth is well and truly over. Middle age is upon me and it is making me feel sad. 

The sadness has nothing to do with my fertility being over, that isn't something that has bothered me. Although I can understand why some women would be upset by this especially those who have entered menopause early before they had the opportunity to have children. I am lucky I don't feel robbed by it, just relief as my periods were just so painful they would dominate 14 days out of the month. I would get cramps up to 7 days before my period began along with tremendous amounts of water retention, I would have period pain for the whole time I bled and it would be at the same intense level throughout. The pains when I had them were so strong I could time the contractions of my womb ( one of the many reasons why I don't have children as if periods hurt that much the pain of having a child would kill me, no word of exaggeration). Having periods made me feel like a prisoner in my own body. I had asked repeated doctors to let me have a hysterectomy, all they would ever say was no because I hadn't had children yet. The best thing that ever happened to me was being put on the contraceptive pill cerazette which stopped my periods completely. I was no longer dictated to by my monthly cycle.

Since 2016 I have endured ever increasing peri-menopausal / menopausal symptoms. I started sweating really heavily at the slightest physical exertion after not really being a sweaty person. I noticed my natural body odour change as well and became paranoid that I smelled, despite Mr Myasthenia Kid and countless friends telling me it wasn't the case. Then out of no where I was hit with crippling anxiety. I have always been an anxious person but this was off the charts, like nothing I could fully explain. I felt like there was a tight ball of barbed wire in my chest and I carried it with me everywhere. I had a constant feeling of my heart skipping a beat in fear. Due to the level of bereavements we went through in a short period of time I put the ever increasing anxiety levels down to a response to the grief. My life felt like it was spiralling out of control. It wasn't uncommon for me to wake up at 1-2am in a full blown panic attack with absolutely no idea what I was panicking about. 

I would find myself in a cycle of  very unhealthy catastrophising thought patterns. I never looked for the silver lining only the absolute worse case scenario. I spent the first year of Dembe's life worrying constantly that he would die. There was no indication that this was going to happen, it was just a constant thought in my mind. I worried about him constantly. The worst thing was I couldn't share my fear because I was concerned that people would think I was deliberately trying to harm him or that I was just plain weird. It was a very lonely place to be and I feel like I missed out so much of that first year due to this irrational fear. I put my fear down to Travis, our first dog becoming sick at 6 months old and passing away just before his 3rd birthday. I also reasoned out losing Frankie and Mollie in quick succession had just made me hyper-vigilant and that it would pass. I would find myself waking up in the middle of the night just to check he was still breathing.

Carrying that level of anxiety day in, day out is exhausting. Especially when it is yours alone to bear.  That is why I can't get over the fact that with just a few doses of HRT (4 so far, I am writing this on Monday morning) that ball of barbed wire in my chest has gone. I have lost that feeling of everything being out of my control. My anxiety hasn't gone completely, I think I will always have some level of anxiety as that is who I am . I would be anxious if I didn't have anxiety! I am feeling much more relaxed and even Mr Myasthenia Kid has said there is a glow about me, something he hasn't seen for a very long time. He said the look of worry has gone from my face and I am back to being like the old me.

HRT hasn't been without side effects, had I known that one of them would be rampant diarrhoea - and I mean the time when it sounds like you have taken a piss out of your ass ( sorry if that is TMI but really I have been writing this blog for 12 years if you are only just offended where have you been?)I would not have started it on Thursday night when I was going to be travelling with Jay and Dembe to look at cars, with at least two 90 minute journeys. Thankfully I woke up at 5am so I could take many doses of imodium ( 8 tablets I ended up taking that day) to stop everything I had eaten form 1973 on-wards pouring out of me. Thankfully after the first day this side effect stopped. I had reached out on social media and asked if anyone else had suffered this side effect and a few people had. I also googled it and found that I wasn't alone with this symptom. Thankfully it did settle down after Friday and I have been fine since.

After the first dose I immediately felt different - well the next morning. Normally Fridays trip out to buy a car would have had me awake all night and feeling anxious and I felt none of those things. I felt reasonably relaxed and happy. Again another feeling I hadn't felt in a while, happiness. Whilst I hadn't been depressed, it was more like a feeling of being low / blue every day, I just felt more in the moment instead of caught up in my head . I even found myself singing which is something I haven't done a lot of for many years. For a couple of years I have felt like an imposter going through the motions of my life, now I feel like it is me. I am not having to pretend I am happy or that inside that I am not a simmering pot of anxiety and rage. Rage has been another symptom I have suffered from. I could and would just explode over the smallest of things.

I am still crying at the drop of a hat which winds me up no end. I only have to watch a slightly sentimental advert and the tears are rolling down my face. I have got into the Canadian series Heartland ( about a horse whisperer, her family and a horse ranch). I watch it most nights before i go to sleep as it is on Netflix and there are 13 seasons. I haven't watched an episode yet without crying at something. I seem to be lasting longer before the tears start, I am hoping that as my body gets used to the HRT * which could take up to 12 weeks, these tears will stop.

I am yet to know if the HRT will make any difference to my migraines, I woke up with one on Friday for the first time in ages. Normally I have been having them start in the afternoon with a classic aura. It could take up to 12 weeks for it to reduce  / stop my migraines. It could also not do anything at all, which means I may have to try different types of HRT to find the optimal one. I really am keeping everything crossed that at the very least my migraines are reduced if not stopped as the last 5 months have been very tough with so many days lost to them.

The hot flushes I was having have also reduced in severity since starting HRT 4 days ago. My hot flushes tend to go in cycles, sometimes they are awful every 20 minutes all day every day to the point my clothes are soaked through and I have to go and change. Filled with the paranoia that I am stinking of B.O due to the level of sweating. It got to the point this summer that I gave up drying my hair. There was just no point as the heat from the hairdryer and straightening irons would have me sweat so profusely that I would have to wait an hour to cool down before I could get dressed. I couldn't apply make up ( on the rare occasions I wore it) as it would just be sliding off my face due to the sweat running down in. When the flushes were at there worst it would leave me feeling dirty and down because I had no control over what was happening to my body despite using supplements such as red clover, sage, black cohosh, royal jelly etc.

This severe sweating cycle would then out of the blue just stop sometimes after months, sometimes after weeks. I would be able to dry my hair and only have to dab my face a few times. I would have possibly two flushes a day and the menopause would be back to feeling manageable. It was the never knowing day to day what the menopause would bring that would leave me feeling stressed.

4 days into HRT and the sweating / hot flushes are reducing massively. I haven't had to change my t shirt 15 minutes after first putting it on because I had armpit rings - something I have never suffered with even when I was well and would go to the gym. If it stops these or just reduces the hot flushes to the point where a tissue will dab the beads of sweat off my face I can live with that after the summer I have just been through.

Just 4 doses in and I can understand why some women say that HRT is a miracle drug and has given them their lives back. Until I started 4 days ago I really didn't realise how much of my life had been lost to the menopause over the last few years.

Oh and we did get a car on Friday and the plan is that we will pick it up tomorrow ( Tuesday 25th August 2020).

Car Accident

 It goes on and on, we are still waiting to hear from the insurance company whether or not the car is a write off. Unofficially the garage has told us they believe it is but it is all in the hands of the insurance company. With Covid many of their workforce are still working from home, so everything is taking far longer than it should. It is frustrating when some of us are already back to a semi normal - as in hubby is back at work and has been for a while. The stupid thing is for every day that the car is at the garage with nothing happening the insurance company will be getting billed. Same for the hire car we have been provided with. It would be in the companies financial interest to make this process go as quickly as possible but instead it feels like we are constantly walking through treacle. I really don't cope well with uncertainty. Not having a car, not being able to look at cars, as there is no point until we have a decision makes my anxiety go up through the roof. Plus with not working I am stuck at home all day with no real distraction from it, fielding the phone calls from the Police who are now involved, thankfully not about us but the other driver and the insurance company as and when they don't hide behind the data protection act, like they did this morning......when it has been me that has been injured and they wanted to talk to Mr Myasthenia Kid about it. You couldn't make it up.

I am still in pain from my injuries, my left arm constantly has pins and needles. Previous when I have had a trapped nerve in my neck the pins and needles would start usually when I was sat at the sewing machine. That healed and I hadn't had any issues for quite a while, since the crash I get no respite at all from the weird feelings in my arm that cover the whole of my shoulder joint, go all the way down my arm and into my fingers. It is incredibly annoying, I scratch the back of my hand a lot because the feeling can be like an itchy burning pain. I have had to stop though as all I do is rip the skin and it doesn't stop the feeling it just intensifies it. I also still can't turn my head properly, so I struggle to look behind me or turn my head to either side. Which isn't great when I am using my mobility scooter, well it isn't safe. So that is now also off limits for the moment.

What has surprised me most is the low mood, it has come out of nowhere. I am guessing it stems from the feeling of things being totally out of control, being in pain and just the turmoil this accident has created. I just don't want to do anything at all, then I feel guilty for not wanting to do anything. It is crazy, doing anything I would normally do is causing me pain or for the pins and needles to intensify so it takes away the desire to do anything. Which then leaves me with no distractions at all so I fall down the car accident rabbit hole and find stuff to obsess about and worry about. 

I hate all this adulting stuff. I am envious of Jay as for 9 hours a day he gets to forget about the accident and do his job. It is with me 24/7, with no escape and idiots on social media telling me that I don't need to worry that the car insurance will pay for a new car. Having already had one car written off nine years ago I know that these people mean well but are living in la la land. The insurance won't pay out what it would cost to replace like for like. They will give us a pay out that could be £500-£1000 short of what we would need to replace like for like. That is why you can get gap insurance when you buy a car, it covers the gap that the insurance leaves because the insurance company only pays you blue book price or what a car dealership would pay for the car, not what they would charge you if you bought it. It is a bloody racket with the consumer losing out all the time.

There is also the additional complication that many car dealers just aren't open or they are appointment only due to Covid. So it isn't like we can just have a mooch around and look at cars either. Another one of the joys of having a car accident during lock-down! what fun it is.

I'm so sorry that this post isn't all rainbows and roses but I have always tried to be honest when writing this and I am feeling really down about it all. I can't pretend otherwise.

Thankfully Dembe is fine if not a little clingy, he seems happier in the car again now after being a little stressed last week. Jay is having problems sleeping, quite often I hear him rattling around in the middle of the night. He is also having anger issues and is on a ridiculously short fuse. People may say it is only a hunk of metal and that would be the case if it hadn't caused all these other issues. Jay is feeling bad because he couldn't protect me from being injured and he couldn't stop Dembe being exposed to a car accident. Is it any wonder he has been impacted psychologically. When I do manage to sleep I am having the weirdest dreams, again all stemming from the accident.

In the week since the accident we have had a handmade lampshade delivered where the fabric has been used the wrong way up, my hair straighteners have gone bang - great in the current weather as I am now a frizzy mess, my big toe nail on my left toe has decided to peel off out of the blue. The only good thing is that my gp has agreed to me having HRT in an attempt to stop my migraines and the awful vasomotor symptoms I am having due to the menopause.

Before the crash we had bought a lazy spa , that was delivered with a European 2 pin plug which isn't very good when we use a 3 pin plug in the UK and an adaptor wouldn't be safe. So I have also been having to sort out a refund from Amazon who are saying it could be 6 weeks. So I could do with a change in my luck currently. It is about time the universe found someone else to pick on!

Ehlers Danlos Syndrome and how it affects me

I first published this post in May 2014 for Ehlers Danlos awareness month, as its that time again I thought I'd share for those new to my blog.

As May is Ehlers Danlos Syndrome Awareness month I thought I would share with you how my bendy body affects me and take some photographs to show you how bendy I am. Now I am well aware that as an Edser I am not supposed to perform "Party Tricks" every doctor I see tells me that after they've asked me to show them! The moves I have photographed cause me no pain - I wouldn't be that stupid to suffer so much for my art!

For those of you unaware of what Ehlers Danlos syndrome is or that are new to it I am going to give you a brief and basic overview. EDS is an inherited connective tissue disorder, affecting the collagen protein in the body. Connective tissue is the "glue" that holds the body together, it connects tendons and muscles to the bones and holds organs in place. Collagen is what makes this glue and in EDS its a bit defective. Our connective tissue is super stretchy and lax so it means that our joints aren't held in place properly. Our joints have an unusual range of motion - so in normal people your joints will only move to a certain point. In EDS ours move to that point and beyond - the photo below is of my fingers which are hypermobile.

If you don't have EDS you will recognise that my fingers should not be able to move this far. I have seen a video of a lady with EDS pull her fingers so far back that they touch her wrist. Thankfully mine don't move that much.

It is important to remember that EDS is a syndrome ( syndrome means a collection of symptoms) so it affects people differently. You may know someone who is double jointed or extremely flexible ( and probably not diagnosed with EDS) they may when having a look at the beighton diagnostic criteria clearly have EDS but have no pain or any other of the associated symptoms. Where as I have constant pain and joints that like to sublux ( partially dislocate) or dislocate on a daily basis. Also some people find that they have joints that are very unstable (sublux or dislocate) and other joints that are fine and actually normal. My elbows joints are normal and not hypermobile and although I can do this (see photo below) with my thumbs the rest of my thumb joint is stable.

My doctors have classed my EDS as type 3 or Hypermobility, ( there are a few different types of EDS) I was diagnosed by a rheumatologist who I paid to see privately. Getting a diagnosis was one of the few things that my GP and I have ever disagreed on, he felt I didn't need it I said that I did. Since I have got the diagnosis it has changed the management of my pain, my dental treatment and provided some much needed answers as to why I have had pain from such a long age. I was still being told I had growing pains at 26 when I visited a gp for my leg pain! You maybe wondering why my dental treatment changed after my diagnosis well with EDS we are more prone to periodontal disease (gum disease) and also we have a problem with all local anaesthetics. For some of us local anaesthetics don't work at all for others, like me we burn through locals really quickly. My dentist also has to give me a local anaesthetic that doesn't contain adrenaline. Due to my autonomic dysfunction adrenaline causes me to have tachycardia and that in turn can cause me to faint when getting up from the dentists chair - which I have done.

The worst area of my body affected is my spine which is very hypermobile from the back of my skull to my coccyx (tailbone) those little vertebrae rarely like to stay in place. My neck is hypermobile and I have what's known as "owl neck" so I can move it not all the way around but too far on both sides. I also found out by chatting to someone on twitter that doing (see photo below) is not normal. You see thats the thing with EDS we have no idea what the normal range of motion is for a body part as we have never experienced normal.

I have four discs at the base of my back that I can't even touch with my fingers without me flying through the air. I never have a day without some sort of back issue - muscles going into spasm, discs being naughty by locking up so I can't stand up you name it my back can do it. You may have heard me mention before how I have to go to bed really early its because by around 5pm I am struggling to hold my head up and my back is starting to resemble the letter 'C'. My muscles work hard all day trying to support me and by 5pm they are worn out and throw in the towel.

Although it may seem like fun that I can do all these things and I have the bonus of looking young for my age (the only good thing EDS has ever given me) life with EDS is not fine and dandy. EDS produces fatigue as our muscles have to work around 5 times harder than a normal persons every time we move. EDS is almost certainly the cause for my autonomic dysfunction its estimated around 78% of people with Ehlers Danlos Syndrome have autonomic nervous system issues.

There are currently no genetic tests for EDS Hypermobility ( other forms of EDS have genetic tests) and no cure for any type Ehlers Danlos Syndrome only treatment which consists of pain relief, physical therapy and bracing joints.

Throughout May I will be blogging about EDS to explain what its like to live with this condition.


Useful links
NHS CHoices explaining EDS and the types of EDS
Ehlers Danlos Support UK UK Charity for EDS patients and produces an excellent magazine called Fragile Links
Hypermobility / EDS and the other issues it can cause in the body- HMSA Charity (HyperMobility Syndrome Association)

   While I was getting my husband to take the pictures the dogs tried to join in. This is Mollie trying to give me a kiss!

This is me giving up as all the dogs tried to join in!

Caffeine Infusion #4

Last week I under went caffeine infusion number 4 and so far the results have been very good. I know I am probably going to regret typing those words in probably less than 24 hours but I can’t lie, I have had a number of days with no head pain. Even hubby has remarked how much better I have been. Although it seems I have picked up a bug of sorts whilst there, since the infusion I have been racked with joint/ muscle pain, sore throats and levels of fatigue that have been off the chart.

It’s really weird but every time I attend the hospital for the infusion I get the same chair. There are 6 chairs in the bay but every time I get the middle chair on the right hand side of the unit. This time the bay was incredibly busy and noisy which I found very draining. Since getting sick I find situations with lots of light, noise and people incredibly difficult to cope with. I don’t know why this is but I seem to burn through any energy stores that I do have. I was in a very bad way when I attended the hospital this time, I was unable to maintain my body temperature, I had barely slept and the CSF Leak headache was reaching epic proportions. I really wasn’t in the mood to be social and thankfully everyone was too busy to spend too much time with me. Normally there are only one or two of us in this bay but on the day of my infusion people were coming and going like it was the platform of a tube station.

Taken during the infusion, I was so cold I had to put my hood up and get covered in blankets.

Due to feeling so bloody awful my veins decided to play silly buggers and disappear from view the minute a needle came near them. On one of the four attempts everything was fine with the vein until the nurse flushed it with saline. It then decided to pop and I was left with a weird bubble of saline in the skin (which disappeared very quickly) and an impressive bruise which has healed very quickly. The poor nurse gave up after the third attempt and brought in his secret weapon which was a student doctor who was incredible at finding veins in people who were difficult to cannulate. He managed to get the vein on the first attempt, the only problem was it was on the outside crook of my elbow, which meant for the next two hours my arm had to be kept perfectly straight or the machine used to run the infusion beeped, informing me that there was a flow issue.

The day before the infusion I had been informed by the consultants secretary that the only way that she could book me in for the infusion was via an appointment with the acute care gp service. I would have to “convince” the doctor that I needed the infusion and to make matters worse they hadn’t been able to locate my notes. I spent over an hour that day photocopying all my letters and notes to ensure that I wouldn’t be denied the treatment after travelling for an hour to get there. I was more than ready for a fight however the infusion was started before I even spoke to the doctor who was supposed to be the one “agreeing” to the treatment. I have the nursing staff to thank for that, as I have seen them once a month since June they know me now as caffeine infusions are not a common occurrence. They just cracked on with it as they were so busy they needed the space in the bay.

I wasn’t impressed with the doctor at all when he decided to rock up to the ward. He spent about 30 seconds looking at my notes before coming over to speak to me. He checked my diagnosis and then without a word of lie asked me “So apart from the CSF Leak your normally fit and well?” I thought observation of the patient was important and something that was taught to doctors. I was wrong, this is a photograph of my foot in the pink trainer touching my wheelchair that is at the end of my bed.

I wanted to say “Well who do you think owns the wheelchair? Is that a give away that I am not normally fit and well?”. Of course I didn’t and I managed to suppress my rage long enough to list just a few of the conditions I suffer with. It really annoys me when a big deal is made about a doctor having to see you before the infusion has started and then they don’t take the time to read your notes. I know it was an incredibly busy day in A&E (this bay is attached to this department) but to not read the notes of someone who you are taking responsibility for legally and for their care is a bit, well it’s actually very crap practice. He was a muppet, who then when he finished talking to me left all my notes sat on the table that was being shared between mine and the next bed. The notes were left there until I drew attention to them when the infusion ended roughly 90 minutes after he had seen me. I hadn’t said anything as I presumed he would be back to scribble something in them evidently I was wrong.

At around 12:30pm the patient next to me, started kicking off about the fact our bay hadn’t had lunch. Two hot meals had been served but the rest of us who would be provided sandwiches had been forgotten. Her husband very kindly got me a cheese sandwich from the meal cart that was parked a little outside the bay. The health-care assistants had to track down the catering staff to get the other two people in the bay fed. A member of the catering team came in around 15 minutes later, brandishing a clear plastic refuse sack (I’m not lying we used the same clear refuse sacks in retail!) with the remaining sandwiches available for lunch. As one of the health care assistants was near my bed I whispered

“If she thinks that presentation is going to earn her a Michelin star, she’s very much mistaken”

The health care assistant doubled up laughing and had to wait for the catering staff to leave the bay before sharing what I had said. On all other occasions that I have been in there the sandwich selection has been brought around on a tray, never has it been hauled around in a refuse sack. It may not seem like a big deal but this was the patient's lunch, yes the bag was clean, the sandwiches were sealed but it wasn’t very appetising for those having to select their lunch from a rubbish sack. It's small things like this that if allowed to slide let bigger problems become acceptable.

As soon as my infusion was finished I was allowed to leave, this session was a little odd in the fact no observations were done at all, no temperature taken, no blood pressure readings and no ECG. I know I have suffered no adverse reactions in the past but with me I can use a medication for years and then suddenly develop an allergy towards it. The staff were exceptionally busy but if something had gone wrong they had nothing to fall back on to prove that I was ok before the infusion started. I like the staff, they are fun and make the infusion time fly by but basic nursing protocols shouldn’t be forgotten just because it's been ok all the other times. Getting to that level of complacency is when mistakes are made and really how long does it take for a set of observations to be done?

At least on this occasion my next infusion has already been booked for the 31st October so no more having to chase up doctors via the consultant's secretary. I now should be able to book in my infusions every four weeks which will make life a lot easier for me. Why this couldn’t have been done before I don’t know. I asked six different members of staff about booking them in before my PoTs & EDS consultant came into the bay, grabbed the diary and booked me in on the spot. It really was that simple yet everyone else claimed that it couldn’t be done or was it that they just couldn’t be bothered to get it done?

It is a shame really that the unit that I am treated in works so well and efficiently in some respects can let itself down on the basics.

P.S - slightly off topic but I have managed to get out on my trike (wheelchair plus trike attachment) twice in the last 7 days. It is thoroughly knackering, using a lot of upper body / core strength which I don’t possess but utterly liberating. It is amazing to see the paths I used to walk every day with the dogs pre 2008 have changed so much through erosion or the opening up of paths by the estate management. The dogs really enjoy me coming along too although their have been a couple of close shaves when they have got a little too close to the front wheel. Currently I am still going out in the early morning whilst I get to grips with using it and the dogs get used to seeing me out with them. I really look forward to my trips out and can’t thank those of you who donated to help me achieve this dream. Thank you xxx

Do you work?

"Do you work?"

It is a question I get asked frequently, usually by medical staff. I feel embarrassed when I have to answer, admitting to not working these days . It leaves you feeling that you are in some way a scrounger dependant on others for your means to survive.

The truth is I would love to work and I think its great that medical staff see past the wheelchair and my long list of medical complaints. Disabled people are more than capable of being part of the work force, however the issue is not that disabled people are lazy or unwilling to be "productive" members of society, there are usually a whole catalogue of reasons why they find themselves without gainful employment.

I was recently asked this question by an old school friend that I hadn't seen for over 20 years. It is a natural question when you are chatting to someone when you first meet them or haven't seen them for a long time. I hate this question because it automatically put me on the defensive. I feel like I have to justify the reasons why I can't work and excuse my inability to be a normal human being. That wasn't implied by the questioner but it is how the question made me feel.

I understand why medical staff ask the question, they want to know if there are environmental factors that could be at play contributing to your condition. They want to assess what it is that you are capable of doing. However when asked I feel like I am being asked to justify my very existence.

You see I would love to work, I worked from the age of 16 to 34.  I was very good at my job and my colleagues will still contact me to ask my advice about things even though I haven't worked since 31st May 2008. I had never had a disciplinary, my capability to do my role had never been questioned, I never imagined that at any point during my life other than retirement that I wouldn't work ( unless I had a winning lottery ticket ). I never thought that I would become so sick that I wouldn't ever be able to go to work again. I never imagined that if I did become sick that my employers would be unwilling to make the reasonable adjustments required by law under the 2010 Equalities Act or when I was working the Disability Discrimination Act. I never in my wildest dreams believed that any of this could happen to me.

You may read my blog and think she sounds like an intelligent person, her blog posts must take her ages to write etc etc. I would agree that yes I am above average intelligence and my blog posts are time consuming and exhausting. Hence why I only publish twice a week, I would love to have the ability to write full time. However I am only viable for a few hours each morning, after that I struggle with any task that demands mental acuity or physical expenditure. My days follow the same pattern 365 days of the year.

I get up each morning riddled with pain despite still being inside my 12 hour slow release dose of morphine. Pain wakes me up every morning and is much more reliable than any alarm clock. Just because I don't squeal, shout or cry on waking doesn't mean I am not in pain, it just means I am used to it. I sleep on a memory foam mattress topper, yet I still wake every day feeling like I have slept on a concrete slab. If I wake up lying on my side the pain will be from my face down, whatever part of my body has been in contact with the bed will hurt. If I have been lying on my back the pain is from the back of my head down. The first thing I do every morning is take 5ml / 10mg of oramorph to dull ( notice I say dull because to actually get rid of the pain completely I would have to take such a large dose I wouldn't be able to function) the pain until its time for my next lot of pain killers.

I make my way downstairs and put the kettle on for what will be the first of many cups of tea that day. I have polydipsia - excessive thirst which is part of my dysautonomia symptoms, this is day and night (at night I will go through 3 litres of fluids). This also means a lot of bathroom breaks because I do not hold on to what I drink regardless of the sodium and florinef tablets I take. I also have my first cigarette of the day ( I know thats a hanging offence and I know its not healthy). By the time I sit down for my first cigarette of the day my orthostatic intolerance kicks in and I will have the first of many pre-syncopal episodes of the day (in varying degrees of severity) some days I am lucky and my vision will just grey out and I will feel shitty, other times I am left working out very quickly which direction it would be best to faint in (for the least amount of physical damage). For the casual observer you wouldn't notice this because if you were talking to me I would just carry on the conversation, not because I am some sort of hardcore hero but because I am so used to it now I try to prevent it being a big issue ( that works fine until I actually do black out / faint).

Once my cup of tea is made I then make my way to the sofa and this is where I will stay until it is physically safe for me to climb the stairs again to have a shower (helped by my husband). This will take several hours to achieve, again to the casual observer nothing appears to be wrong with me other than the fact I look like a lazy bitch. You see my illness gives you no outward signs, no clue as to what is going on inside. Its easy to make assumptions by just looking at me.

During my enforced sofa time, depending on how mentally with it I feel I will check my emails, facebook, twitter and if I am ok I will attempt to write one of the two blog posts I write every week. Some weeks I don't manage to write two, thankfully I have used the good weeks to put together some what I call back pocket posts, ones I use in an emergency. However my emergency posts are not always fully formed and need some work done to them, in those situations I usually just post my apologies.

If I am not up to writing then I will watch TV, due to my enforced early bedtimes - anything from 4pm onwards I have to record a lot of programmes that I follow in the evenings. I haven't seen evening TV for so long I couldn't tell you what happens after the 6pm news on BBC1. I follow a lot of TV far much more than I will ever admit to. Somedays I can't even do that because my memory is so poor I can't remember what happened in the previous 15 minutes and the plotline is making no sense.

If I manage a shower and there are many days that I don't, I need to have an hour or so of rest to get over the physical exertion. Things have changed dramatically from my pre sick days. I used to wash and blow dry my hair everyday, I wore make up - even on my days off. I never left the house without make up. I wore nice clothes and believed that sweat pants were for gym bunnies or obese people that were just kidding themselves. Its easy to be judgemental when you're not in others positions. My favourite piece of clothing now is a pair of yoga pants and a sweat top or pajamas. I used to be well put together and took pride in my appearance. All of that takes far too much energy these days and the energy I do have I want to use for other things. I still make an effort for special occasions and doctor appointments ( sometimes doctor appointments are special occasions as it maybe the first time I have been out of the house in months). 

I have learnt that you need to be properly dressed and wearing a full face of makeup for doctors appointments otherwise you get accused of being depressed. The fact that the journey to see them is going to take you days to get over, even though it was only a 15 minute car ride is neither here nor there to them. Anyone who doesn't take pride in their appearance must be suffering from depression after all thats what they learnt at med school. I also learnt not to wear a lot of black to these appointments, black is one of my favourite colours with very pale skin and blonde hair black is dramatic on me especially if I go for bright red lips. Unfortunately doctors aren't that fashion forward and all black is another indicator that your sickness is all in the mind. Anyway I digress as usual!

As the day ticks on by the less and less energy I have. I struggle to keep myself upright even in a seated position. Due to Ehlers Danlos Syndrome affecting my spine as the day progresses my spine takes on the shape of a letter C and my neck starts to struggle to hold my head up, it lolls towards the top of my back. This is not comfortable but as I try to stay out of bed as much as I can I will lie on the sofa or sit propped up by cushions. I have difficulty thinking clearly and have difficulty finding the right words. I know the word I want yet it cant seem to make its way from my brain to my mouth. It hasn't been just once that on my personal facebook page I have asked friends and family for the word I am looking for. To know that you are an intelligent person and to fail to be able to articulate is soul destroying. It is one of the symptoms I find hardest to deal with.

My sight deteriorates throughout the day as well with varying amounts of double vision or ptosis (which can affect one or both eyes). Using computer screens becomes more and more difficult. Dependent on what level my health is at on a particular day I may have to use my oxygen concentrator to supplement the amount of oxygen circulating in my system.

Bed can never come soon enough and it's not uncommon for me to be so exhausted by the mornings activities that I need to sleep for an hour or so in the afternoon.

I realise now I haven't even mentioned the other ways in which my dysautonomia can impact my day. I never have a day when my postural orthostatic tachycardia syndrome does not play a part. On a bad day every change in posture (which can mean as little as turning over in bed or moving my head) is accompanied by the feeling of my heart racing to the point it seems as if it will burst out of my chest. I become short of breath and can feel at times that I am having a heart attack such is the severity of the pain in my chest. Again to the casual observer it would only be on a very rare occasion that you may notice that there is wrong with me. I am the master of disguise and to admit to you that there is a problem means that you are in my inner circle, the only people I tell the truth to when you ask me how I am.

Next time when someone asks me "do you work" I am going to answer "Yes, I am a professional sick person. Such is the level of my expertise you will never realise the sheer shittiness of the hand I have been dealt!"

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 inbetween 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........