bowel adhesions

Recovery is dragging

/ RachelMorrisMcGeethemyastheniakid / 2 Comments

I wrote last week about the consequences of going out and I clearly didn’t have a clue how bad things would be as I am still suffering after my day trip. I think maybe it is just rotten timing that ever since I have been feeling very tired and run down. This last Monday I ended up with a hideous migraine that knocked me flat on my back for over 12 hours and had Mr Myasthenia Kid have to come home from work to look after me. I am glad I am out the other side of that but it has shocked me how battered and bruised I am still feeling for having a few hours out of the house.

I am guessing having a solid six hour block of socialising, driving a scooter and having to use a lot of brain / muscle power probably wasn’t the best idea. The longest I am normally out for is probably 90 minutes at an absolute push and that will leave me more exhausted for normal for up to two days after. My days when I don’t leave the house are in cycles of rest and activity. I have to pace myself or I end up paying for it. It hasn’t helped that there have been appointments that I have been unable to not attend – ringing up and explaining to the receptionist that you need to re-book because you are shattered never goes down well. There isn’t really a word in the English language that accurately conveys the level of exhaustion because we overuse words like fatigue, shattered, tired etc. For me it gets to the point where I can feel like I am having an out if body experience or that I am dreadfully hungover combined with feeling so utterly exhausted it can be really hard to motivate myself to move. 

I have been on my embroidery machine and sewing machine a lot as I am making Christmas gifts for friends and family. I know it is only October but I get panicky if things aren’t made and then I start to feel stressed which means I no longer enjoy making the items. At the moment I have been limited to an hour or two a day, which doesn’t help me get loads done but it is the longest I can sit without the pain becoming so intense that I have to lie down the rest of the day or concentrate for. Obviously on the embroidery machine when it is stitching out I don’t have to concentrate on anything but I do need to be switched on enough to know what step comes next as for the first time I have been using the embroidery machine to do applique and I am really enjoying it.

I know I should have taken it easier last week but even after 12 years I think I can push it and there will be no consequences. I never ever learn. Maybe I simply refuse to.

This week my body has just thrown a hissy fit and ensured that I can’t carry on ignoring it when it sends out distress signals. Every bloody condition I have is flaring out of nowhere – Hidradenitis Suppurativa two abscesses after at least a month to 6 weeks without anything, Arthritis hands as stiff as can be, Nerve Pain left leg is burning which it hasn’t done in years, Tinnitus (so loud I am struggling to hear anything else) Migraine and now a headache every day since, nausea, IBS, adhesion pain, Muscle Spasms in my back and feet you can always guarantee will make me swear like a sailor literally everything is kicking off at the moment. I always find pain adds considerably to the fatigue. 

This isn’t a woe is me post or an attempt for sympathy, I am just explaining how things are at the moment and why at the moment I am struggling to come up with dynamic or scintillating posts. I am finding it hard enough to follow a conversation let alone put an intelligent blog post into words.

I do count my blessings though, Dembe is my hero. On Monday when I was so sick with my migraine he wouldn’t leave my side at all. I thank my lucky stars I have him as even on the days when I am really suffering and thank goodness they are few and far between he is stuck to me like glue and always makes me smile.

So I promise to attempt to be kinder to myself over the next week and get back on an even keel.

Consequences

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

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

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

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

 

Getting back to normal, if there is such a thing.

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Around two days after I wrote my last post “Washout” I ended up contacting my doctor and was prescribed antibiotics. I had been running a temperature for around a week and I just wasn’t feeling any better. 

 
Wednesday morning (30th January) I woke up in the middle of the night feeling like someone had smacked me in the face with a shovel. My sinuses hurt, my teeth hurt and I felt violently sick. As I quite often get migraines like this I decided to try to get back to sleep, it didn’t work. As the morning wore on the pain was increasing where as my migraine attacks last 12 hours at the same intensity I had to concede that this wasn’t a migraine, I had sinusitis and probably a chest infection. When I described my symptoms to the gp she agreed and I was given a 7 day course for amoxicillan. No wonder I had been feeling so awful.
 
After 3 days on the antibiotics I was feeling almost human again. However as usual the antibiotics did a number on my innards which required me to take at least 6 imodium a day. The diarrhoea was so bad it left me feeling drained and triggered off very painful spasms causing me then to have bowel adhesion pain. I stuck with them until the end of day 5, after that I just couldn’t do it anymore. 
 
I could cope with the exhaustion levels if my pain levels hadn’t suddenly just ramped up. Out of nowhere I am back to having extremely cold legs which have to be warmed up by a hot water bottle or by sitting on my electric throw. When going out in the cold and believe me it’s not that cold for this time of year, yesterday it was between 6 and 7 degrees Centigrade, I was in agony with my hands despite having my arthritis gloves on and my legs were aching despite having leggings on under my jeans. I had just gone through a really good period, pain wise and had barely been touching my oramorph which I use for breakthrough pain but as of two days ago, I am taking it every 4 hours when awake to try to knock down the pain levels I am currently experiencing.
 
At the moment there seems to be no happy medium temperature wise. I am either hurting due to the cold or stripping off my layers because I am suddenly boiling hot. So hot that I am sweating. An hour later I am back to freezing again and this cycle repeats itself throughout the day. I wish I knew what I could do to combat it. It’s not like the flushes I was getting before taking the red clover, black cohosh and the sage leaf supplements which have done wonders for my hot flushes. This is a temperature regulation issue. And temperature control is part of the autonomic nervous system. I guess it’s just adding in another element of fun.
 
On a happier note Dembe is settling in very well, you can read about his adventures at www.thedembediaries.com I publish every Monday letting everyone know what he has been up to over the previous week. I don’t know where I would be without him if I am honest. It is exhausting though looking after a puppy when you compare looking after adult dogs who are independent and happy to be left sleeping for most of the day.
 
Dembe is very close to me but I wouldn’t expect any different, he and I are alone together all day ( around 11 hours) bar Jay coming home for 30-40 minutes at lunch time. Dembe loves Jay too, you only have to witness the furious tail wagging when Jay comes through the door to know that. But he is a mummy’s boy at heart. He loves nothing better than curling up at the end of the sofa and sleeping, as long as I am at the other end. 

 
 
 
When I get onto my sewing machine or embroidery machine, he sleeps on the bed I made him in the kitchen. Due to feeling so rotten, not a lot of sewing has gone on. However I did manage to finish this birth announcement cushion, which is a gift for a friend to celebrate the arrival of his daughter. By the time this blog post is published the gifts recipient should have it.
 

 
I am really pleased with the cushion as the feet are from one design and the text is from an inbuilt text on my embroidery machine however I had to get the placement and size of the text right so that the cushion looked balanced. 
 
I used a product called Sarille, which is a type of interlining mainly used on curtains. I saw in various groups lots of suggestions for using wadding behind embroidery designs that were stitch dense and being sewn onto lightweight fabric. I had loads of the Sarille lying around from when I used to do my subscription box. It has given the cushion a nice bit of body at the front and it has also ensure there is minimal puckering. 
 
It’s the first bit of sewing I haven’t had to force myself to do since Frankie and Mollie passed away. For a while there I didn’t know if my sewjo would ever come back or if Dembe would sleep enough for me to manage to get anything done. Jobs are taking me longer as I now tend to wait for Jay to be home before sewing anything. Embroidery is different as I can get up and move away ( when the machine / thread is behaving), so I can keep an eye on Dembe. He is very used to me doing bits of embroidery, he  will lie on his bed in the kitchen and go to sleep. Puppies do sleep a lot although when they are manically running around, chasing their own tails it can seem like they never sleep!
 
I have also managed to get two other bits of embroidery done today, birthday presents for March. I do like working ahead so that I don’t feel under pressure. Whilst I am in the mood to be creative I tend to go for it. Its only in the last few days that I have felt the creative juices starting to flow again. That has as much to do with getting over the infections as it does with dealing with the grief losing the dogs caused. 
 
Its taken 4 weeks for me to feel anywhere near normal and it is still very raw. I am managing to go days without crying where as in the beginning I was lucky if I could go an hour without breaking down. 
 
I am finding it very difficult at the moment to motivate myself to write this blog, mainly because the dogs, our Weimaraners featured in it from the very beginning. They are what kept me sane and kept me going, when it would have been incredibly easy just to give up and not fight anymore. It is taking some getting used to being without them. It’s a new normal and it’s going to take a while to get used to it.
 
 

Pulling Teeth

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

This morning has been mainly spent engaging in what would be called avoidance behaviours. I have been doing anything and everything to avoid putting pen to paper or in my case, speech to text. Blog writing can be hard especially when there is a myriad of things happening in your life that leave you exhausted beyond belief. To put it bluntly currently my state of health can best be described as crap but more about that later.

 

Sometimes blog post writing can be like pulling teeth. I have spent a couple of hours on a post that I had planned to publish tomorrow but it feels wrong. It doesn’t feel right, I don’t really know why and I am rapidly approaching a deadline. The things that are wrong are a) too tired to continue,  b) I have written a lot but seem to have got nowhere and c) I have tried editing it down but it’s still not right. That is the way it goes sometimes so you will have to accept my sincere apologies for this sorry excuse of a blog post.

 

I had promised well not promised, just said that I would write about my last caffeine infusion this week but it’s just not happening. I am sorry to say that the second infusion hasn’t worked as well as the first one. Even in the hours after the infusion where I should have been headache free, I wasn’t. I would have around 15-30 minutes headache free and then get stabbing pains on the top of my head. Initially I put it down to being over tired due to the travel, stress of going to hospital and meeting up with Sharon one of my oldest and closest friends. However the next day it became crystal clear that the second infusion wasn’t going to work as well as the first.

 

I spent a couple of days completely worn out by it all, so much of my time was spent lying down anyway as I was too tired to do anything else. So initially I only had pain after sitting up for an hour. The first infusion had allowed me to be upright for much longer for many days after. It is very hard not to become weighed down by it all. I have spent a lot of the last week in quite a low mood which wasn’t helped by the fact the only person I saw for over 7 days was my husband and the engineer who came to fix our sofa. It is sad when you get excited at the prospect of a visit from an engineer.

 

Since I wrote my blog post last week I have had a urinary tract infection which needed treatment with antibiotics, both the infection and the antibiotics made me feel quite sick/ ill. The once the infection cleared I was knocked sideways with bowel adhesion pain. I have had to do a fluid only fast today as it has become painful to both eat and drink. By doing the fast I am hoping that the pain will settle down and allow me to escape having to be admitted to hospital. The adhesion pain is draining and it doesn’t help that despite the high level of pain I am bloody starving. I hate having to fast as I am a hungry person, I rarely ever lose my appetite. So you know things are bad when I am willingly forgoing food.

 

What has cheered me up over the last week was Jay (hubby or Mr Myasthenia Kid) finishing painting our garden fence. It is a funny story how this came about. A neighbour of ours has put her house up for sale, me being extremely nosy and liking being able to see how other people have decorated the same house took the virtual tour of her property. The tour also included the garden and I saw that her fence panels were painted a lovely blue / green. I showed Jay who was equally enamoured with the colour. I don’t know the lady, despite living here for 13 years and her only being 3 doors up from me. A sad state of affairs really but as they say people really don’t know their neighbours anymore. So I googled Fence Paint Colours and her colour was the first one to come up. Obviously it is very popular. If I hadn’t taken the virtual tour Jay would never have had to paint the fence. We do have to say a big thank you to our neighbours on both sides who lent a hand.

 

fence left

fence right

If you are interested to know what the colour and brand of paint is, it’s Cuprinol Garden Shades in Seagrass. I just need to point out that I am not receiving any remuneration for mentioning this in the blog post, it’s just whenever I have posted pictures of the fence on social media everyone has been asking what the colour is.

 

The disappointment of the caffeine infusion not working as well has probably coloured my view of how effective it has been. I have only had a couple of days in the last week when I have had to take to my bed all day. I haven’t had any of the days that I had prior to the first infusion where I have spent hours hugging the toilet bowl due to the vomiting the head pain induces. I am however back to waking up with head pain that increases in severity the longer I am upright. It is gutting when something has worked so well previously and you felt almost human again.

Currently all I want to do is this

 

willow sleeping

Willow

The Fancy Dress Party

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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.

 

Permission denied

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

I have a real problem with some medical staff here in the UK. My problem is they seem to have forgotten that my body is mine and that I have the ultimate say on whether they examine me or not. I think many medical staff have become so caught up in the job that they no longer see the patient as an individual who has autonomy over their body. Permission is not being asked for before intimate examinations are taking place and in my view hundreds if not thousands of patients are being assaulted every day in the UK through medical staff treating a medical examination as something that the patient has to have rather than asking for their permission.

 

You may think I am over reacting but where else outside of a hospital would you allow someone to touch you intimately or remove your clothing without consent? It simply doesnt happen and if it did the police would class it as at best assault and at worst sexual assault.

 

It makes me extremely angry that medical staff are routinely ignoring the patients right to say no and either putting pressure on them to consent or carrying out an examination without consent. If you think this doesnt happen I can give you two examples of when it has happened to me whilst in hospital and these are in 1998 and then again in 2014. In my opinion this has got worse not better. Implied consent is not enough and it isn’t under the law also. I dont think it will be long before a member of the medical profession will be prosecuted for assault in this country due to either assuming that a patient has consented because they are there or carrying out an examination / removing clothing without the patients consent.

 

Obviously in an emergency situation –  the patient is unconscious etc then yes consent does not need to be sought. I dont have a problem with those situations, I have a problem with a fully conscious and alert patient being bullied / coerced into an examination or not actually being given the opportunity to decline the procedure / examination.

 

In 1998 I had quite a serious operation and was opened up from just below my sternum to my pubic bone. The operation was to remove adhesions that had grown around my bowel and had stuck my intestines to my abdominal wall. I was told by the nurses this was one of the most painful operations you can have and I can assure you it was a 10 out of 10 on the pain scale. I had a morphine pump that I could self administer morphine with and I was allowed to press the button every five minutes. I would lie there watching the clock count down for my next dose because what ever was administered wasn’t enough to take the edge off.

 

 I was dazed and confused the following morning after the operation and in agony when two health care assistants whipped the curtains around my bed and informed me they were there to give me a wash. I wasn’t asked “would I like a wash?” I wasn’t asked if I wanted two complete strangers to strip me naked, I wasn’t asked if my pain was adequately enough controlled that I could get out of bed without screaming. It was presented as a fait au complet, I had no say in the matter, I was being washed whether I wanted them to or not. I cried and cried begging them to leave me alone, that I wasn’t well enough to stand and be washed. My cries fell on deaf ears, they pulled the sheets back and proceeded to man handle me out of the bed. I cried with the pain and humiliation of it all. The hospital gown was soaked in blood and stuck to the dressing that covered the wound, gentle they were not. It was ripped off me and I was left there standing naked with nothing to preserve my dignity.

 

I am an intensely private individual when it comes to my body. It probably stems from low self esteem. I always dress modestly, I don’t wear string vests in the summer I wear t-shirts. I don’t really wear shorts outside of my house. When I was younger when I wore short skirts ( as was the fashion then) I wore thick black tights. I just don’t feel comfortable flashing the flesh and can probably count on one hand the number of people who have seen me in a swimming costume. I just don’t whip my body out and display it. I take my hat off to anyone who can flash the flesh but its just not me.

 

So standing there that morning in the nude in front of two strangers was humiliating. I was vulnerable and helpless and they did nothing to put me at my ease. I had been bullied and coerced into being washed. I could have managed to gently wash myself in bed had I been given the option but options were not offered. My consent was not sought and this is what I am talking about, staff ignoring patients and not treating them appropriately. Where else in life would this situation come about being stripped naked by two strangers against your wishes? Anywhere else this would be seen as a criminal offence yet this regularly goes on in hospitals up and down the UK.

 

These things shouldn’t be happening but they are, fast forward to April 2014 and I am back in hospital for my octreotide trial. Within 30 minutes my dignity is being challenged when I am informed that I will have to be swabbed for MRSA. I stupidly assumed that this would just be a nasal swab but oh no its a nasal swab, throat swab and perineum swab. Not only do I have to swab my ring piece (well practically) but as privacy and dignity are lost as soon as you enter hospital I have to be observed doing it to ensure I swab properly. How hard is it to rub a long handled cotton bud on your perineum? 

 

This wasn’t the only issue I encountered whilst in hospital but thats a whole other blog post! 

 

On the evening of my admission I kicked up a bit of a fuss due to issues with my medication which was being administered at the incorrect doses. After the pain medication issue was sorted out a nurse and a healthcare assistant came into the room whipped the curtains around and without even talking to me started to remove the bed clothes. I sat bolt upright and demanded to know what they thought they were doing. The nurse answered and said “We are checking you for bed sores”. There was no “we need to check you for bedsores is that ok?” or ” is it ok if we check your body for bed sores?” Again it was treated as a fait au complet, which now being older and wiser I knew it wasn’t. I quickly informed them as I had only been on the ward 4 hours and was checked earlier permission was denied. This didn’t stop the nurse who then started tugging at my pajama bottoms to remove them. I jumped back and said ” take your hands off me, continue and I will call the police, what you are doing is assault”. She jumped backwards and said “we have to check you for bedsores”. It didn’t seem to compute with her that I was completely within my rights to refuse this.

 

She started to give me a long talk about bed sores and why it was important that she check my buttocks, back and heels. When she realised she had failed to persuade me she gave up. A weaker more vulnerable patient wouldn’t have put up a fight. 

 

The next morning whilst I was chatting to the pharmacist about my medication a health care assistant waltzed into my room and announced she was there to wash me. She didn’t introduce herself or seem concerned that a male member of staff was in the room and perhaps I wouldn’t want to strip off in front of him. My dignity seemed to be the last thing on her mind. When I declined the offer of a bed bath with an audience she didn’t like it. I told her I would be taking a shower and then again I was told she would have to watch me. I joked with the pharmacist that all the staff on the ward were a bunch of perverts. The health care assistant stropped off. I simply waited for her to be distracted by someone’s bell to go off and took a shower without being watched!

 

I am still incredibly angry that medical staff seem to think their job overrides my dignity and the need for my consent. They need to understand that they have to ask for my consent directly and not assume implied consent because I am in the building. The NHS has produced this document Reference guide to consent for examination or treatment it clearly states “This booklet provides a guide to English law concerning consent to physical 

examination or treatment. This second edition provides an update on legislation 

relating to obtaining valid consent – the Human Tissue Act 2004, the Mental 

Capacity Act 2005 and recent legal cases – and provides references where appropriate.”

 

It goes on to say “Valid consent 

1. For consent to be valid, it must be given voluntarily by an appropriately informed 

person who has the capacity to consent to the intervention in question (this will 

be the patient or someone with parental responsibility for a patient under the age 

of 18,11 someone authorised to do so under a Lasting Power of Attorney (LPA) or 

someone who has the authority to make treatment decisions as a court appointed 

deputy12). Acquiescence where the person does not know what the intervention entails 

is not ‘consent’. “

 

If the NHS has this booklet circulating then either the issue of consent has been an issue for them or they are aware that many medical professionals are working under the notion of assumed consent. Whatever the issue it is clear that the education of its staff is not working. Since my experience in 1998 things haven’t changed and thats not in the patients best interest.

 

I am sorry this is such a long post but it is something that I am very passionate about. Patients are unaware of their right to say no and staff seem to be happy to keep it that way.

 

Sources:

Reference guide to consent for examination or treatment

 

BMJ Paternalism or partnership 

 

Are women sufficiently well informed to provide valid consent for the cervical smear test?

 

A fundamental problem of consent