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.
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.
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
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.
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!
Jay dressed as Fox Mulder from the X-Files
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
The Joker and Harley Quinn
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!!
Even the alien got involved on the night.
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.
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 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.