Entry 5: May I Be of Assistance?

Attempting to describe what the relationship is like between a "PA and client" has had me stumped for a few days. Caz asked a lot of questions which led me to thinking how on earth would I describe what it is like having a carer, without needing to be looked after.

I always feel like a bit of a goon when I mentioned my PA, because in the regular world people with PAs are highflying business types and those who are in need of assistance organising their life because they just have so much to do. It is a term that is normally only ever associated with The Office Environment. So, why on earth do I have a PA instead of a carer? Well, it comes down to dignity I guess. Those who are in need of care often are people who cannot speak for themselves, who are very vulnerable and unable to physically look after themselves or ask for help. Being cared for is a lovely notion when it is a loving member of the family as an expression of love, but when it is strangers coming in to make sure that as a human being you are maintaining a certain level of hygiene, nutrition, basic standard of living etc there is something very demeaning about it. It suggests that you cannot take care of yourself, be independent, think for yourself, that you are reliant on other people; a weight on society who is draining funds and resources.

One of the very, very few things that was not a bad thing when I had my accident was that I was still myself – I still have my mind. I am still able to think for myself and make decisions, and I am lucky enough to have been injured at a point in my spine (never thought I'd say that in any context!) to be able to speak and breathe. Therefore, I can speak for myself and let my decisions and opinions be heard. I know how to take care of myself and how to direct that care. So I am assisted personally, rather than taken care of.

I have for many years been closely linked with people who have needed carers. At one point I was a carer myself going into people's homes and looking after them – helping them to dress and undress, helping them with meals, helping them with their continence… And now it is me who is being helped. I think this has been quite important in my working alongside PAs over the last two years because it helped me see things from their perspective and if not just my own.

When I was first considering leaving the spinal unit, and setting up the house and my care package, I spent many a session with the psychologist and on training days working out how to live with a PA. There is so much to consider, and it's all affected by how they are funded, and how much time you get given. It is a very unique relationship because they are not your friends, and yet they will know things about you, no one else will ever know. You do not draw close to them emotionally, but I have to trust them enough to tell them my pin number. You can give precise instructions and yet it will never be the same as doing it yourself. I may want to leave the house on my own, but I always wonder if my laptop and other valuables will still be there when I get back. In many ways it can sometimes feel like I have a servant. I was always so independent, that I did find giving instructions and asking them to do things for me very hard. In the beginning I had quite confident PAs, who practically told me what to do! As time has gone by my confidence has grown and I feel more able to command situations and direct the person with me. There was a run of months where I had a different PA every 2 to 3 weeks, and I came to dread having a new person who I would then have to quite literally train in "The Ways of Helen". In the end, a very good friend prompted me and then bugged me to produce "The Book of Helen" for every PA to read saving me from having to repeat everything all the time. The book is now available on Amazon at a retail price of £6.99… Just kidding! Seriously though, the book did help in some respects with those PAs who were conscientious enough to read it and those who had a good enough grasp of the English language to understand it.

On the whole I think I've been very, very lucky with the PAs that I have had. I had heard horror stories of what life was going to be like living with them, and having someone constantly around in my space both annoyed me and fed my fears of how vulnerable I had now become. For the last year or so I have had two steady PAs working with me, with only the odd stranger here and there. I basically got to pick them from the group that had flowed through the previous year, and they were happy to come back and work with me, which is always nice. :-) Having someone regular working with you does make all the difference, and although you know that it is essentially a business arrangement, one hopes that the PA has chosen that line of work because they have a caring nature and a good heart. 

Entry 4: Pneumoania

People with a high-level SCI have very little to no lumbar support. In layman's terms, that means my back, stomach and core muscles no longer work, and that also includes muscles around my chest that would normally be involved in breathing. If my SCI had been any higher up my neck I would be on a ventilator for the rest of my life. As it was, there was just enough nerve signals getting to my diaphragm and some chest muscles to allow autonomous breathing. It took awhile to bring me off the ventilator, a few months, and a little while longer after that for my tracheostomy to be removed.

I mention all of this as background information to paint the scene really as to why my catching any sort of chest infection could actually kill me. Maybe I'm being melodramatic here, but actually, my breathing is such that I have no cough reflex. So if you can imagine having a full chest of phlegm… You're at your sickest, as your coughing and hacking and bringing up all kinds of goo. I can't do that. I literally cannot bring up any goo whatsoever on my own. Being unable to breathe is so very scary; you can hear the rattles and bubbles and crackles inside your lungs but you simply cannot draw in any air, or let it out again. So you dial 999, and hope the paramedics will arrive quickly.

A year and a half ago I was admitted to hospital in Liverpool due to the above problem described, and whilst a friend was visiting me I grew short of breath during our conversation. The next thing I knew I was gasping for air, then I could not breathe at all, and then I passed out. I woke up in ITU - having had a respiratory arrest. My lungs simply could not work any longer with all the crap inside them. Needless to say, this caused great concern and panic for me because, well, it came out of nowhere… One minute I was chatting away and the next I had a plug of phlegm that caused me to stop breathing completely.

Just over two weeks ago I was admitted back in the hospital because I could not breathe properly. It came on within an hour… First I was feeling fine and then I started to feel funny, and I couldn't really cough but I needed to. My PA tried to assist me in coughing, but nothing was shifting. 12 hours later I still wasn't able to shift anything off my lungs and I was gasping and rattling and wheezing. My temperature was soaring, my oxygen levels were down, and the paramedics whisked me off to A&E.

1. When a girl can't breathe she's going to panic. Do not ask questions about whether or not to pack her shampoo and toothpaste!

2. Physiotherapists should be ready and waiting at the hospital, due to the paramedics radioing ahead. They should not be called in three hours later after arrival in A&E.

3. Taking four samples of blood from a panicking tetraplegic will only serve to make her panic more. One set is expected, the second is reasonable, should the first set be inconclusive. The third and fourth will only cause more panic and raise suspicion… Wanting to know what is so important about my blood that is causing concern for so many samples to be needed.

4. Recognising that the tetraplegic who cannot feed herself or use her hands is probably very reliant on her PA/carer for pretty much everything, so NHS staff should realise that the PA has quality information and superior knowledge of the patient than they do. Listen to her.

5. Primary Care Trusts should understand that hospitals CANNOT fully provide for the care needs of a tetraplegic with such limited movement, and therefore the PA/carer should not be removed at all. Continual care is necessary to provide continuity, and reduce the stress of the patient. Whilst I'm suffering with pneumonia I do not want to have to explain and repeat to every single new shift of staff how to feed me, wash me, dress me, turn me, and aid me in personal care.

6. Most importantly - I'm dealing with PNEUMONIA, I do not want to have to tell every new person who comes into contact with me how I ended up as a tetraplegic. The sickness is hard enough without having the stress of My Story having to be told a million times.

7. The most effective way to clear lungs in a person with no cough reflex is to assist them in their coughing - basically giving them a form of the Heimlich manoeuvre. A slight shove will not suffice. Especially when the phlegm is like wallpaper paste. You've really got to basically punch me in the stomach! Physiotherapists know how to do this. Teaching nurses is great but then nurses teaching nurses is not so great. Especially when it's then nurses teaching nurses (becoming third and fourth hand). It's like a form of physical Chinese whispers, and in the end, when I need my chest clearing the physio needs to be called anyway! It's really annoying that I always need them when they are not actually at work… Early in the morning, and last thing at night.

Okay then, that's enough moaning from me for now I think. Needless to say, I was very glad to get home!

Entry 3: Economic Tool

in my quest to find a decent blog spot, I have decided to experiment with tumbler and Google…I know a lot of people come on here and read all sorts of things about just about everything. I must ask everyone who is in any way interested in what ever is that I'm writing about to please be patient with me as I find the best way for me to blog!!

I'm currently sitting in my living room/bedroom having just listened to my PAs doing a "handover" for nearly an hour. It's really interesting in some ways hearing what the PA who's been with me for the last week actually has to say about my care needs and provision to the new girl just arriving. It's actually quite disturbing that it takes an hour to really go through everything, and even then it's just the basics! Who knew that there was so much to say? I'm frequently reminded at times that I am quite hard work. Another human being has to be employed and paid to ensure that my health, safety, and general life can be kept at a reasonable standard. Without another human being being paid to look after me, I would literally grind to a halt and I suppose eventually I would die. Unable to feed myself, or give myself a drink, I imagine I would die of thirst first. I would end up with pressure sores because I cannot move myself. I might develop Autonomic Dysreflexia because I cannot go to the toilet,which basically would mean my blood pressure would get so high that it would cause some form of brain aneurysm or heart attack or whatever happens when your blood pressure gets so high – it would basically kill me.

Vulnerable seems like an understatement when I think about it.

Entry 2: Hello and Welcome

My first blog entry was written some time ago, during a spell when I had particularly felt a way of describing what it is to be tetraplegic/quadriplegic that could reach others. one of the biggest issues that I personally have come across since becoming paralysed is the major, life changing differences that now exist between my world and those of the able-bodied.

I hope in this blog to be able to express some of the challenges that I have faced and overcome, and to be able to provide encouragement and support to others out there who may be in my situation or something similar. I also would like people who are not disabled to read and find out what life is really like  in a chair; although even the most empathetic person can try to understand, I know myself that there is really no way anyone who is able bodied truly can appreciate what it is like. therefore, the more information they have, the better really.

First of all I'd like to give you some background information about who I am. Born and raised in Liverpool, I moved south when I gained a post in teaching children with special needs. I was raised with a brother who has profound autism and I had over the course of my life come into contact with both children and young adults with a wide range of disabilities both mental and physical. following several years of teaching, I decided to take a year out to go travelling. I had already spent six weeks in Australia, and I was determined to return there via South America. After travelling through Peru I went south into Chile. I went up to San Pedro de Atacama, and I saw geysers spraying water and sulphur, I swam in salted lakes and watched wild flamingos fly overhead.

I was on a day trip out visiting a salt pan where flamingos gathered, and a oasis in the driest desert on earth… Such greenery in the middle of emptiness. The day before this dry desert had actually received rain for the first time in years. So as a minibus driver took us at 80 km an hour along an unsealed road, it slid out of control and flipped over. I was knocked unconscious and when I came to I had been flung from the minibus, and my neck was resting on what must have been the windowpane. I could hear people crying all around me and I tried to get up to help them, to find out what was going on. But I couldn't. I couldn't move. My body wouldn't do what I told her to do. I started to feel pins and needles all over my body, and a strange man stood over me, telling me to stay calm and not to move. He covered me up so I wouldn't burn in the sun. He kept talking to me so that I wouldn't go to sleep. All I wanted was to get up, people were  crying and I wanted to see if they were okay. Eventually an ambulance arrived, and I was taken to hospital number one.

And that was the beginning of my new life.

Entry 1: The Mission

You have arrived on another planet, one that is far, far away from planet Earth. On this planet everything you know does not apply. When you interact with the native species your perspective of them is so different – you have to crane your neck to look upwards as everybody is so much taller than you. Your neck hurts as you develop the new muscles and increase your stamina to adapt to seeing the locals in this different way. Food is very similar to that of planet Earth, except everybody eats in a different way to you and because you are unique the locals will stare at you or pretend not to, as you consume your food. You want to fit in and be the same but there is no way this can happen because you are alien on this planet, and look so different. Even your very appearance, though the natives may be humanoid, is obviously alien. You have markings on your skin, damage from the journey, that cannot be hidden.
Your movements will be limited and disjointed. The atmospheric pressure and gravity field do not allow your limbs the freedom of movement you had previously and so even the very way you hold your arms, hold your posture, and position your legs is alien to those around you. They are a constant reminder in front of you of your difference to the local populace. You may experience rapid limb movements or "spasms" as your body deals with the change. The nerves to your muscles will struggle to send the necessary messages from your brain and back. If you are lucky these spasms will be short and pain-free, though this cannot be guaranteed. For this reason you will find medication in the Medi-Doc, along with many other aids for supporting your life on this planet (though this will mainly be for pain management and waste management control). Managing your bodily functions on this planet will be difficult. For some reason these humanoids engage in removing their waste product in private and on their own. This is why it is essential you remain with the team you travel with. Do not expect the locals to understand why or how you deal with this matter. They may find it "disgusting" and is certainly a social faux pas to discuss in polite society.
Of course on this new planet you would want to be able to go and explore. Unfortunately you are not designed to be able to access their world. As they are giant humanoids able to jump great steps and squeeze through narrow doorways, able to scale any slope and breathe the air around them. To go out and visit this new place means that you have to wear a spacesuit especially designed to ensure your alien body does not get too cold or too hot. It is unable to access the planet's heat source and regulate accordingly. You will need specialist equipment to allow your body to move outside. A fully charged battery pack under a chair, fat air tyres with reinforced rubber tread, and modified steering controls to allow choice of direction. And of course, don't forget your seatbelt!
Before exiting your spaceship make sure all breathing apparatus is in place (I find inhalers work best, though occasional use of a nebuliser may be necessary). Never forget your lungs are not designed for this planet's atmosphere – you do not have the muscles necessary around your rib cage for taking in the level of oxygen you would normally acquire on planet Earth. When interacting with the planet's local populace you may find completing sentences difficult, as you take in a much smaller quantity of air. The natives may not have patience with you and become hostile. Take warning!
Lastly it is necessary to say you have my full sympathy and support for tackling this new world. It will be difficult, and dangerous at times. You will become hurt physically, emotionally, and psychologically but you will also learn a great deal about yourself, your fellow mankind and the humanoids of this new planet. Though every day will be a struggle for you, if you keep with your team and maintain as much of a positive connection with the local populace as you can, you will find each day will become just a little bit easier as you adjust to life there. I do hope for your sake that one day you may return to Earth, but for your own sanity do not dream it for yourself. The spaceship is only designed to go one way and we do not have the technology yet to enable a return flight. God be with you.