Consequences

I went out on Sunday with friends…. I know that sentence seems bizarre. It is something I haven’t done in 12 years. On the surface it may appear to some that to attempt such a thing must mean that I am doing better. I mean I left the house and socialised for 6 hours. What they didn’t see was the fact there were days of pacing so activity followed by rest periods. Massive amounts of ensuring I got my medications scheduled at the right time and attempting not to let my anxiety take over.

We planned going to the create and craft show back in July. As the ticket only cost £8, I was prepared to lose it if on the day I woke up and wasn’t well enough to attend. It seemed so far off in the future the 29th September that it may as well been a year away. So when I realised it was the coming weekend it set me into a panic. My biggest fear was becoming ill away from home and then ruining the day for my friends.

The anxiety leading up to this event was off the chart. I lost a few nights sleep over it. I kept catastrophizing, what if’s? The stupid thing is many of these what if’s have never happened. It was a fear of the unknown, of never having been to a Create and Craft show or knowing how busy it would be.  Surprisingly the morning of the show the anxiety had subsided and I was able to look ahead to the day. I was almost relaxed which then made me anxious.

I had more medication on me than a pharmacy to cover me for every eventuality.  I had my 4 hourly meds – pyridostigmine and pseudoephedrine to ensure that my blood pressure remained high enough for me to remain vertical and not suffer horrendous fatigue. Extra pain relief in case sitting on my scooter for all that time caused muscle spasms or just pain. Stugeron in case my vertigo decided to kick off and cause me problems. Taken at the earliest opportunity it can stop an attack in its tracks. Buscopan, in case due to nerves my bowel adhesion pain decided to pop up and make itself known. Paracetamol – to give me extra back up for my pain relief. I decanted oramorph ( liquid morphine) into a smaller bottle so I didn’t have to carry a huge one with me. Alarms were set on my phone, compression socks on, allergy lists, medication lists and medical condition lists were safely stowed in my bag. Along with a list of my doctors and next of kin. All this and I was only leaving the house for a few hours. If that all sounds like someone who is doing better let me know.

Every trick in my book was employed to ensure that I would be able to cope with this trip out ( as a one off ). Everything that could be done in advance of Sunday was done. Clothes for the day sorted by Wednesday, down to underwear and compression stockings. All clothes had to be comfortable, in layers so that I could be warm or cooler depending on how my temperature decided to behave on the day. Normally I am always cold. All medicines, allergy lists, medical info was printed out weeks in advance and kept in an envelope so on the day ( or day before ) it could just be slipped into my bag. My bag was packed on Friday and Saturday, last minute items Chilly bottles of drinks were added on Sunday morning. Nothing was left to chance. Every eventuality was planned for. Jay would be staying at home with Dembe and would be ready to come and get me should I need collecting early.

The day itself was fantastic, I managed to chat to lots of people. I met the ladies behind the scrap-busting quilt challenge from Sugar Bowl Crafts and bought half a metre of material from then, some Anna Maria Horner fabric. I chatted at length to the local branch of the Embroidery Guild and would have signed up to attend meetings had they not taken place on a Saturday. Not driving and having hubby work in retail meaning Saturdays off are like gold dust means I miss out on a lot of things. I also spent a great deal of time talking to the Quilters Guild  region 4 which is my region. I am now considering entering a quilt into the novice category of The Festival of Quilts as 2020 is the last year I would be able to enter this category. You have to have been sewing less than 3 years, I started October 7th 2017.

I could have spent an absolute fortune on fabric. There were just so many beautiful fabrics from so many different designers. I managed to pick myself up some bargains. I got some gorgeous fat quarters, some Christmas and some non Christmas.

 

I managed to pick up some good quality thread for £1 a reel. The pinky one is for me to finish a cushion cover as I didn’t have any threads that were even close to the colour of the fabric. The blue thread is for my Christmas table runners. As I tried applique on my embroidery machine last week for the first time, I absolutely loved it.

Yesterday I found out my snowmen are going to be the Brother Embroidery machine group that I belong to banner for the month. Which was a wonderful surprise.

A lot of my Christmas fabric was bought to make Snowmen and Father Christmas table runners as gifts. So I went in with a set list and didn’t deviate from my plan. It would have been incredibly easy to go mad but I have so much fabric that I need to only buy what I need, not what I want! Or I will have to make another scrap-busting quilt very soon!

By the time we had finished at the show I was getting cold and exhausted. I was in bed by 6.15pm as I could no longer hold myself upright and had already suffered a bad fall in the kitchen about a hour earlier caused by being over tired. I was asleep before 8pm and slept all the way through waking at around 6.30am. By 7am I had badly scalded myself with steam from the kettle so Monday was effectively written off as I spent the day on the sofa with my hand in a bowl of cold water.

Yesterday was pretty quiet too although I did manage to stitch out a cushion front for a friend. Only because hubby was home and I didn’t have to do anything other than look after myself. I managed to forget to take my blood pressure boosting medications so by 4pm I was wondering if I would make it to dog training. I took my medication and had two cups of coffee and that saw me through. However this morning…Wednesday all the activity has caught up with me and I feel hungover, the concentration span of a gnat and every part of my body hurts.

I knew that I wouldn’t get away with going out unscathed, I am a little surprised that it has taken over 48 hours to hit me properly. Normally it is 24 hours before I feel an outings / events full effects. But this was a huge deal and I had probably kept myself going with the adrenaline still firing and the fact Monday I couldn’t do anything and I was still limited yesterday. There are always consequences, I will always end up paying for enjoying myself. I can’t complain it is far worse not to have done anything and still wake up feeling like you have been run over by a truck. I might not look that sick but looks are very deceiving. Only people who really know me, know how I look when I am taking a nosedive. This morning I only had to catch sight of myself in the mirror to know that this was the day I would be paying for trying to be normal.

So it was a huge deal for me going out on Sunday, it wont be a regular thing as I don’t want to spend days recovering no matter how much I enjoy myself. This is now recovery day three and this is the most multisystemic one. Today my blood pressure is misbehaving, I am white as a sheet and my pain is at a higher level than the norm. I would love nothing more than to announce that my health has made such a significant improval that a trip out with friends had no consequences for me but sadly that just isn’t the case.

Massive thank you to Alison and Tracey for looking after me. Also Chris for driving us.

Dangerous Medicine

We all know that all medications and that  medical procedures come with a certain amount of risk – the biggest  being death. However in this day and age you would think it would be virtually impossible for a patient to die of neglect. I know mistakes can happen, they shouldn’t but they do. Someone I knew of, was acquainted with has died this week due to being falsely diagnosed with FI – Fabricated Illness. You can read about Shawn here  (and yes the newspaper has managed to spell his name incorrectly.) 

We were ( the CSF Leak group ) so happy when he made his way to Germany where he believed he would finally get the medical treatment he deserved and which the NHS had denied him for so long labelling him as having a mental health issue and fabricating his symptoms to get attention. Because Shawn dared to question the expertise of those he sought help from and because his condition was outside the scope of their knowledge, that label was applied and prevented all other medics within the NHS to seemingly be able to view his case with fresh eyes and objectivity. They all seemed to just cop-out and follow the notes of his previous doctors. If enough doctors write on your notes that you have fabricated your illness, it basically means all help is withdrawn and Shawn had to die to prove to them how sick he was. When all he wanted to do was live. 

I am so angry and just so fed up with the medical profession’s arrogance and their inability to admit when they just don’t know. Too many people are being labelled as having a mental illness and when they eventually do get the correct diagnosis – the doctors are reluctant to remove the mental health diagnosis. I’ve had it happen myself, I ended up in hospital as my stomach had swollen ( I looked like I was pregnant with twins) and had reduced bowel sounds, I’ve had an intusscesception before as a child and I have had complications from bowel adhesion’s resulting in an open surgery to remove them. (info on intusscusception ) . As I was being examined a student doctor asked me how long I had been on seroxat ( an antidepressant) the year was 2010 and I had last taken seroxat in 1999. The suggestion being that the student doctor was already looking for a mental health diagnosis for my swollen stomach and reduced bowel sounds.  She seemed surprised when I suggested she had a look at my more up to date medical notes and that I hadn’t been on seroxat since 1999. She was forming an opinion on notes from 10 years ago. It must make life so easy if you can blame the patient for being sick.

On another occasion I was in accident and emergency due to the indwelling catheter that I was having to use blocking. My bladder and bowel had ceased working the day before so the district nurse had been called in and a catheter inserted to relieve the pressure on my bladder and allow the contents of my bladder to be emptied. Having had a glance at my notes before treating me the doctor asked me how long I had been suffering with somatiform disorder. An unusual question to be asked when a catheter is being removed from your urethra. Again the diagnosis was 5 years out of date but had failed to be removed. A tilt table test ( well two) had proved I had PoTs and Orthostatic intolerance and a private rhuematologist had confirmed my diagnosis of Ehlers Danlos Syndrome. My Beighton scale was off the charts as I was bendy in joints that were not included on the scale, along with my slow healing, wide paper-thin scars, stretch marks as a child etc etc.

It doesn’t seem to matter if you have a “proper” diagnosis ( not dissing mental health here I suffer with depression and anxiety) if you have a whiff of a mental health diagnosis in your medical records all problems from then on will be attributed to your mental health issues. Just take the trapped nerve in my neck and the numbness in my arm last summer being put down to stress. It was only when I was losing my ability to grip with my hand and had a proper examination was I informed that I had an impinged nerve and if Physiotherapy didn’t help me I would be looking at spinal surgery.

I know so many people who are struggling with depression and anxiety who refuse to reveal this to their doctors and get help because they know once the diagnosis is on their records ( and especially if they female ). Many of them in the PoTs group I am (one of) the admin for I reckon 99% of the 4k membership were told that they were suffering from anxiety when they first went to their gp about their palpitations / near syncope. It’s a nice diagnosis for busy gp’s who only have 10 minutes per patient. The problem is so many people with chronic conditions are hiding depression and anxiety because they know they will no longer be taken seriously that we are now sitting on a ticking time bomb and there will just not be the resources to deal with it when it finally goes off.

Medicine is getting dangerous, it is ignoring those that don’t fit the text-book definition of the condition they have been diagnosed with and doctors are handing out mental health diagnosis without a patient being assessed properly by a psychologist or even a psychiatrist. I was diagnosed with somatiform disorder by a neurologist. It’s like having a podiatrist conduct your open heart surgery. It’s not a situation that would be allowed but many doctors who have no formal training in psychiatry or psychology are diagnosing conditions that will have detrimental ramifications on their patients treatment forever. 

You can complain, you can ask for a letter to be put in your notes, explaining that you don’t have conversion disorder, Munchausen by proxy, Fabricated Illness Syndrome, Somatiform disorder but doctors can and do choose to ignore it. Keep shouting loud enough that you don’t have the condition and it just acts as more proof that you are mentally unstable. Cry in a medical appointment discussing these falsehoods contained within your medical notes and you will be diagnosed with depression. You can’t win, the doctors hold all the cards and something has to change because too many people are dying due to neglect. When I mean neglect I mean wilfully denying treatment due to arrogance or ignorance. It makes me sick to my stomach and I am so very fucking fed up with it.

The other one they like to use against you is medical knowledge, even if you come from a medical background like nursing and would know about the condition or symptoms you are talking about. I don’t have a medical background so have had to research things because I can not trust the doctors to do it. The last time I trusted a doctor I ended up almost needing spinal surgery, as they told me my neck pain and numb arm was stress.

 Know too much about the condition and you are spending too much time on the internet looking up syndromes to have – real words spoken to me by an NHS consultant when I told him I was feeling the sickest I had ever felt. A few weeks later I was diagnosed with Meniere’s disease and a few weeks after that I found that my prolactin was raised and it was possible that I had a pituitary tumour ( thankfully I didn’t but we never found out why I was lactating or why the prolactin had been raised).

I have used the countless examples of where mental health diagnosis has been used as a cop-out by doctors to excuse their laziness / unwillingness to pursue the answer / outside their skill set on me to illustrate the point of how easy it is to suddenly find yourself fighting to be heard when you know you are sick. It is not in any way to take away from Shawn’s tragic story.

I am so angry because I have lost friends and relatives from medical cock ups. My dear friend who passed away last year was incorrectly diagnosed with COPD, only to be dead from lung cancer 7 months later. How they missed the tumours in her lungs and the one at the base of her spine I will never know. It wasn’t like she hadn’t had all the appropriate scans. The same mistakes keep being made and no one is learning the lessons the health authorities keep saying that they are.

I will defend the NHS and its principles with my dying breath but I can’t defend shoddy workmanship. The rotten apples need to be removed. The lessons do need to be learned because Sorry is no good when the patient has died.

 I feel quite strongly that we are living in a time of very dangerous medicine, where the cheapest disease is the one diagnosed, where tests are denied when there is already a mental health diagnosis present of which the patient is either aware of unaware of. The system is broken when patients can no longer trust their doctors to first do no harm.

For more information on how easily you can have an erroneous diagnosis applied to you please check out the links

It also usual plays straight into their hands if you are female.

Functional neurological disorder / conversion disorder

Medically unexplained symptoms

Conversion disorder / Somatisation disorder

Management of MUS

Factitcious Disorder

munchausens-syndrome

 

The Fancy Dress Party

So last Saturday I let my hair down and enjoyed myself. I apologise to those of you who believe I should continually go around wearing sack cloth and ashes, never enjoying myself. I am suffering for enjoying myself? of course. Is the pain and suffering worth those few hours of fun? Hell yes. Will I be doing it again anytime soon? Not on your nelly.

I would just like to take this opportunity to say I am not paid or endorsing any of the products featured in this post. All products have either been birthday / Christmas presents or bought with my own money. 

This years joint birthday party was postponed due to my continued ill-health. Normally we hold a get together of our closest friends on the nearest Saturday night to our birthdays. This year it would have been Halloween, so before we had to postpone it we had decided this years party would be fancy dress.
The town that I live in, Exmouth in East Devon has a massive tradition of fancy dress on New Years Eve. Before I moved to Exmouth nearly 20 years ago, I had never heard of this tradition. I am ashamed to say I have never been out on the town in Exmouth on New Years Eve. When I lived in Plymouth, I only went out once on New Years Eve and I can’t say I enjoyed it. The pub was packed, we’d had to buy tickets (that irked me somewhat before attending) and it was no where near as much fun as I had been led to believe. I digress as usual, anyway Exmouthian’s like to don fancy dress at the drop of a hat, so I knew the fancy dress theme would go down well.
Initially I had decided to dress up as Dorothy from the Wizard of Oz. I actually own this costume as I used to wear it into work during Christmas week, which made work rather fun. During my time at work I have dressed as a Christmas pudding, a rag doll, an angel, a fairy and a farmer, just to name a few. However as the end of October approached I changed my mind on the Dorothy costume and decided for a laugh I would dress up as my husband, wearing his full work uniform. Luckily he was replacing his shirts, so I used an old one (so as not to cause any damage to his uniform) a pair of his work trousers that had a hole in the bum (carefully stitched up), his old stained work tie and a jacket that the button had been smashed when involved in an incident with a roll cage. So no actual real uniform was harmed in my use of it (just in case anyone from his work is reading this!).
The costume was the easy part, I would have to employ some skill in managing to give myself his famous five o’clock shadow. Now I know I have moaned about sprouting facial hair but believe me even if I had let that grow in the name of art it wouldn’t have been impressive enough to pass muster. Thank goodness for the Internet and Youtube. I had contacted a friend of ours who is mad keen on make up and who I blame solely for my latest obsession Mac Makeup, on how I was going to do a stubble effect. She pointed me in the direction of YouTube and there were countless videos on there about how to produce a designer stubble effect with face paint. After watching the video’s a couple of times I then went online to purchased black and white face paint along with an item called a stipple sponge.

A stipple sponge is a textured sponge that special effects makeup artists use to create stubble, beards, cuts and grazes. I will admit I was extremely lazy and didn’t bother to have a practice run on my make up which I should have done. All I did with the sponge was rub it on the black face paint and apply the sponge to the back of my hand to see what it created. Once I knew that I could apply the sponge quite lightly to get the desired effect I was reasonably happy I would be able to create the desired effect on Saturday night. The old me, pre-ill-health would have practiced the make up several times, I was low on energy leading up to the party and couldn’t spare a drop practicing.

On the night I applied my usual foundation and concealer as a base (to provide my skin with a barrier to the face paint, in case of an allergic reaction as I have very sensitive skin). I moisturised my skin well during the day, as I know it can dry out when I have applied foundation giving me a bit of a flaky appearance. Once the base was on I then had to darken and enlarge my eye brows using an angled brush. My husband has much darker and fuller eyebrows than my own, doing the stubble effect without making up my eyebrows would have looked ridiculous. So I thought in for a penny in for a pound and went for it. I then contoured my nose to give me an altered appearance. I just used a matt brown eyeshadow very lightly applied to the outside of my nose and blended it in. I then applied a grey / blue matt eyeshadow to my under eye area, my husband has darker skin there so I wanted to ensure that I had the same. I then used a matt light brown eyeshadow over my eyelid again blended in well. I used the eyeshadow right up to my false eyebrow. Then I took a deep breath and approached the application of the fake stubble. First I applied white face paint using a stipple sponge, once that was applied I went over it with the black face paint, again applying with a stipple sponge.

I am terrible at taking selfies! Also both eyebrows are darkened but the photo makes it look like I only did one.

I apologise for the poor quality of the photo, it was taken in the evening with insufficient lighting. With the picture below you can see my make up in the context of the full costume.

I would like to point out that is a cushion acting as my belly!

To recreate my husbands hair, which is far shorter than mine, I slicked it back using hair gel, whilst my hair was still wet. I used a very low setting on the hairdryer to “set” my hair. Once the outer hair was dry, I then applied dry shampoo to give it a grey look and concentrated it on the area where I wanted a white streak. Jay has had a white streak in the front of his hair for as long as I have known him which is 19 years next February. This was then coated with ample amounts of hairspray.

Once my hair was completed, it was an enforced rest period. Due to the amount of rest I needed this meant I was fully made up from 5pm with the party not starting properly until 8pm. I needed to get my pain under control as my back had been behaving really badly for a week prior to the party.

Jay dressed as Fox Mulder from the X-Files

 There is always one part of my body that likes to really play up before a big event. More often than not it is my back and it didn’t disappoint. Usually when I have back pain it is a trapped nerve caused by my shifting vertebrae, this pain was different and it is something I haven’t suffered from for many years. My back is continually going in and out of spasm. Any movement of my arms above shoulder height, so moving my arms so that my elbow is in line with my shoulders will set my back off. Standing still, not that it happens very often, also sends my back into spasm. Despite being maxed out on all my painkillers and muscle relaxants on Saturday, the pain was incredibly intense. For all of the party I had to sit with my electric heat mat on my back and all that did was take the edge off enough so I could enjoy myself.

I had sworn off alcohol for months leading up to the party because every time I had a drink (just a small glass of wine) it would induce the spins. It has been awful not being able to have the odd glass of wine or gin and tonic. I am not a massive drinker but I do like the odd one throughout the year. I know many people with Dysautonomia can’t drink as it exacerbates their symptoms, I can but the next day I will suffer with a racing heart and whilst drinking I will have problems with things like temperature control and I will become freezing cold. I do infrequently use a small amount of alcohol as additional pain relief when all else isn’t working. On Saturday night I tried a small amount of sangria and to my joy found that an hour later I didn’t have the spins, which has happened all summer long (so I stopped having any alcohol). I decided to then have a larger amount (half a glass) and I waited an hour to see if I got the spins and I didn’t, so I then decided that I would let my hair down and have a few drinks. It relaxed my back enough to reduce the pain. It’s now Monday morning and my back hasn’t gone into spasm. I am not prescribing alcohol as a cure or recommending anyone else do it. I certainly won’t be drinking again until Christmas, regardless of what my back does in the meantime.

Our guests made a supreme effort in their fancy dress costumes so I wanted to share them here:

The Christmas Elf

Beetlejuice

Snow White

The Joker and Harley Quinn

Grumpy Cat

The Cowboy

Immie and me (another terrible attempt at a selfie!)

We held a vote for the best costume of the night, embarrassingly I won but as we had bought a prize ( not expecting either of us to win) I gave the prize to K who came as the Joker. Not only did he apply fake tattoos, spray his hair green he removed his chest hair!!

Well done to The Joker, for winning best in show and thank you to everyone for dressing up for the party.

Even the alien got involved on the night.

Frankie decided to sit between Jay and I during the pub quiz. Hubby and I won for the third time in a row! I can’t take much credit as it was him who answered the most questions.

I was very surprised that the dogs didn’t get scared due to the fancy dress, I know some dogs can get funny about costumes. They did sulk when I got dressed in hubby’s uniform. They equate the uniform with going to work and on occasion my husband does work night shifts, also I wore a version of that uniform many moons ago. I am sure that for a moment there that they were convinced I was going off to work, which is weird as I haven’t been for 8 years.

 As you can see from the photo above, I have the tell tale sign of an electric heat wrap, the elastic belt squishing down my belly so the wrap is nice and close to my back. This is always my reserved chair during a party as it’s the closest one to a plug socket.

I am paying heavily for having fun as I always do. Long gone are the days when after a night out I could get up and carry on with normal life. Sunday morning I was woken up at 8am by the feeling that someone was stabbing me in the stomach with a knife. The pain was off the charts, I stumbled to the bathroom as I thought for a moment I would be sick, thankfully I wasn’t. The pain continued it was what I class as my 10/10 pain. I started to lose consciousness for a few seconds at a time however I managed to take my morning meds and some oramorph. I then passed out again and then lay in bed wondering if I should wake up Jay. I didn’t because I knew I had more chance waking the dead and I also knew he would call an ambulance. Eventually I went back to sleep but was woken again with the horrific stomach pain at 10:20am. Jay came into my room and got into bed beside me. I had to beg him not to make any movements that would rock the bed, as anything other than lying perfectly still was causing the pain to get worse. Then within 15 minutes the pain had disappeared, I was just left nursing a hangover.

During the evening the abdominal pain started up again, I took some buscopan and oramorph and went to bed. On Monday (the day of writing this) I have pain it’s probably 7 or 6 /10 so much less intense but I am acutely aware of the fact at any moment it could ramp back up again. I have decided to fast today and have only liquids. I can only sip them as taking on too much in one go makes the pain worse. I don’t know why it started up it hasn’t been this bad since 2013. I really hope I am not in for months and months of pain again.

I think this sleepy picture of Frankie sums the mood up perfectly and explains why he won’t leave my side.

 

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



Socialising and chronic illness

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When you are chronically sick socialising can take a back seat. Either because you are too sick to visit friends or too ill to have them visit. Social networking sites can be a great way to catch up with people but it will never replace the joy that is felt when mixing with real people.

 

For those of you who follow my antics on my “The Myasthenia kid” page on facebook between blog posts you will be well aware that I am currently getting over some serious socialising. Last Saturday night (7th June 2014) my husband and I held a house party. Nothing too raucous, just 9 friends over for a bbq and some booze. We had planned this party for a couple of months and called it our “40 1/2 birthday party” as a bit of a laugh.

 

My husband managed to get the day of the party off work and basically did all the cleaning and prep work for the party to ensure that I rested as much as possible during the day so that I could enjoy myself during the evening.

 

The insomnia gods were not on my side last week, two nights were spent without sleep one of them being the night before the party. Due to the bad storm in the early hours of Saturday morning, even without the insomnia I wouldn’t have slept as my three hounds are absolutely terrified of thunder and lightening.I did try to get some sleep once the storm had passed but it wasn’t to be, I managed to go 24 hours without sleep.

 

How I got through the party I will never know. If it had involved leaving the house at all, I would have in all honesty cancelled. Not only had I gone without sleep but over the last week my bowel adhesions have started to kick off and on Saturday my stomach started to bloat with gastroparesis. It doesn’t make for a glamourous look and by 1030pm I had changed into my yoga pants, snuggle top and a pair of slippers. I know how to rock the party look.

 

My guests were brilliant, they may not know or understand what is wrong with me – I display no outward signs, like many others with an invisible illness but they all pitched in getting their own drinks, tidying up their plates and rubbish and telling me off when they felt I was doing too much. Thats the kind of guest I like at my party ones who help and don’t sit back expecting to be waited on hand and foot, purely because these days I just cant do that. No one said a word when I changed into my casual gear after looking so glam, all they want is for me to enjoy myself and relax in their company. Friends like that don’t come into your life too often! 

 

What my friends won’t see is the length of time it will take me to recover from the party. It could take weeks or even months such is the severity of the arse kicking my body will give me for enjoying myself. Much of yesterday was spent asleep. Today so far has been spent lying on the sofa. Luckily hubby has a late start today and hes done all the household jobs he could fit in before he left for work. I am thankful for his late start today even if it means he wont get home until after 10pm because it means I can lie in bed all day and not feel guilty for not spending time with him. The guilt I feel is enormous when I spend time away from him, in bed when he is home.

 

In preparation for the party I ensured Mondays blog post had been completed the week before. I naively thought I would be ok after the party (I never seem to learn) to write Thursdays post ( today’s post) during the week. I feel so awful I have scrambled together this post to ensure something is published whilst I recover!

 

Every part of my body hurts and on Saturday night it was no different such is the consummate professionals performance. I quietly topped up my painkillers on a trip to the loo, I injected my octreotide without drama, my only concern being I was wearing a white top and if it bled ( as it sometimes does) I may have to explain the stain. The only sign that I was flagging was getting changed out of my party gear and the wedge shoes that I swear were crafted by the devil himself. Even sitting down those shoes were killing my feet! I am a fashion victim and theres not a woman in the world who hasn’t endured pain to look good!

 

At least I have my shellac nails to remind me of what a good time I had. On the morning of the party I treated myself to a manicure and pedicure, partly because I wanted to look nice and partly as a way to stop me using up too much energy panicking that the house was tidy for the party. It did take up a lot of energy and by the time my toenails had been painted my legs were shaking with fatigue caused by holding them in the same position. Its silly things like this that remind you how sick you really are no matter how many times you try to convince yourself and the outside world that you aren’t.

 

I love socialising and seeing friends, my body doesn’t and that’s the choice I make. To put up with my body wreaking its revenge on me for trying to be “normal” for once. Sometimes it feels like too higher price but I will never give up.

 Frankie feeling a bit like me after the party!

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A quick update : Tuesday 10th June, I have now developed cellulitis in my right hand, first finger so I am back on antibiotics. Having spoken to the dr she thinks my immune system is very low at the moment and hence why I am struggling to get rid of the cellulitis. I am back on antibiotics and now have a skin lotion that is antibacterial to apply three times a day. If I am honest I am feeling a bit sorry for myself!

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update … couldn’t think of anything original as a title LOL

Sorry I haven’t been on for a while. I’ve been up and down. When its been good I’ve been seizing the chance to do some jobs around the house that I didn’t manage to do last year. Things that I could do sitting down, exciting things like cleaning cupboards!

I’ve now switched to gabapentin the side effects are a little weird, I’m quite irritable (poor hubs), dopey and then I get periods of hyperactivity! It is helping with the neuropathic pain. I’ve just got to get back on the midodrine again to see if the bladder side effects have lessened.

I’m hyper this morning due to the amount of morphine I’ve taken in the last 24 hours. At 230am I woke up with awful stomach pain. Joy of joys my bowel adhesions are playing up. I should have expected it as I’m having a nasty EDS flare at the moment, but I haven’t had an attack like this since 2010 where I ended up hospitalised. So for the next few hours I am on liquids only, which is a nightmare as unusually for me Ive woken up starving hungry. If I had known I wouldn’t be able to eat today I’d have stuffed myself yesterday.

The pain is very strange so I will try and explain it to you. Its not like cramps when you get a stomach upset. Its a totally different vibe that’s effected by movement, body position and eating. I have a large scar on my abdomen from 4 operations starting when I was 3 years old when I had an intussception (the bowel telescopes back on its self. When I was operated on my parents were told it was 50/50 on whether or not I would live). I had bowel adhesions in 1998 that needed to be removed surgically and Ive had a couple of exploratory ops as well. Due to being opened up so many times in the same place I have no feeling on the skin around the scar. This has led me to burn myself with hot water bottles etc but was great when I had my belly button pierced in 1999!

I get a feeling of constriction around the scar, deep inside my abdomen. It feels like the scar is being pulled into my stomach. Normally its a quick flash of pain and then its over and done with until the next one. Today its constant, even moving my arms / hands to type is causing me to notice the pain. The only treatment is painkillers and no food. If the pain becomes more than I can stand I have to go to hospital in case my bowel has become obstructed and this would require a surgical intervention. All the signs of this happening are clear, I’m not vomiting and I have been able to go to the toilet. So I will just see how it goes.

On the diet front (today should help if I am fluids only) Ive lost 9lbs since 4th January and I don’t seem to be losing anymore. Hubs has lost 21lb in the same time and his clothes are hanging off him. Next month he is doing a six mile run in aid of Cancer Research so his treadmill training has become focused on increasing his running time. At first he couldn’t run at all and had to walk briskly. Hes now up to 12 mins running and 8 mins walking so hes doing amazingly well. I am very proud of him. His mood has lifted enormously and he seems a lot less stressed – other than this morning when I told him about my tum!

I hope everyone is doing OK and thank you for reading – Rach xx

Physio…..what to do?

As regular readers will know I have started physio therapy and have had two sessions in the last month. I know that I am not going to have miraculous results in just this short time but at the moment I am wondering if its worth continuing at all.

I have had good results on the hip stability front they no longer feel like at the slightest opportunity they will slide out of joint. That’s an excellent result, however my muscles are fatiguing so quickly that I am lucky if I can do more than 3 repetitions before my muscles start jerking all over the place. I have been doing the exercises at least twice a day sometimes three times a day but my muscles are not getting any stronger. They are showing signs of muscle fatigue that is common in the diagnosis of myasthenia gravis. Bev advised me that once the movement goes from smooth and controlled to jerky that I am no longer using the correct muscles and have stopped being effective. Imagine my frustration that after three weeks I am no further on than I was in the beginning.

At my last visit I was asked to do some extra stomach muscle exercises. These hurt but I can cope with muscular pain after completing them. I would expect sore muscular aches and pain as my body is so out of condition. What I didn’t expect was that the stomach exercises would irritate my bowel adhesions leaving me in incredible amounts of pain underneath an abdominal scar. The pain has become so intense that its now once again hurting when I eat as my intestines are caught up in a web of scar tissue. I am now doing the exercises every three days so that I can keep the pain at a level I can deal with.

I will be honest I have been a bit lazy with my neck exercises as I noticed when completing them I was ending up with more headaches and migraines. I spoke to Bev about this at the last visit and she said it could be the muscles getting tense or going into spasm. Unhappy with this explanation I stopped doing the exercises and the headaches have disappeared. Unfortunately it coincides with when my dose of steroids was altered so I don’t know what has caused the headaches to stop. I have now started the neck exercises again to see what happens.

I was also supposed to be increasing the amount I walk by 10% a week, I just can’t do it. Any increase of walking means more back pain and hip pain. My hip pain feels like the two bones are grinding together the back pain means my spine locks up and I further reduce my mobility.

At the moment I am seriously considering ending the physio as its causing me more pain and other problems. I will give it a bit longer before I make my decision. I knew physio would cause me muscle aches and pains due to the state I am in. I wasn’t prepared for the whole host of other issues that have come along.