Useful Aids Part 1: Introduction

This is the first part in a short series on aids and adaptations, so it seems a good time to explain my own personal position. 

When my disability first started to really affect my ability to function on a day-to-day basis, the first thing that I did was turn to a disability catalogue and see what was out there to help me. There were, and are, lots of ingenious things on the market to make life easier for people with disabilities. Many of these aids are very expensive. If I can improvise a cheaper solution, I often prefer to do so. 

It's easy to get so used to using an aid (sliding board, special cutlery, etc) that it becomes very difficult to move outside one's own environment - either I have to bring all my own cutlery everywhere I go, for example, just in case I decide to stop for a snack, or I miss out. Covering all eventualities can make for a heavy handbag! Wherever possible, I try to learn how to manage without aids, even if I do then use aids most of the time. 

All this stands within reason - if I can't adapt my way of doing something to avoid the need for an aid, can't make or buy a cheaper alternative, then I need an aid. In this case, there's often a choice, and I'd like to share with you, through this series, some of the aids that I do use regularly, why I use them, and some of the other options that are available. 

Finally, I'd like to remind you about why I need to use these aids in the first place. I have Ehlers-Danlos Syndrome, which means that my joints dislocate very easily. I don't have much strength or joint stability. I have breathing difficulties, chronic pain, a hearing impairment, dysautonomia, gastroparesis and dysmotility, bladder dysfunction, and immune/endocrine problems. I know others with the same condition who use far more aids, and others who use no aids at all. None of us are affected the same way by our conditions, and we each have our individual preferences as to how we deal with our impairments. This series is based on my own personal experience, so while I try to be objective, my opinions might be very different from yours!

While I'm preparing my list of aids that I love, why don't you tell me about yours? What do you find really helpful? What was a waste of space? Are there any aids that you'd sell your own grandmother to own?

Satyagraha

There is an opera by Philip Glass about the development of Mohandas Ghandi's philosophy of Satyagraha. It's a compound word from the Sanskrit, meaning "Truth Force" or "holding onto the truth."

I was listening to the radio this morning, to a discussion of, among other things, Ghandi's early life. This word, Satyagraha, really struck me. It is necessary to hold onto the bigger picture in order to make change.

As someone with a disability, I encounter people who see themselves as victims, martyrs, or warriors. These people rail against the injustices and hardships faced by people with disabilities. 

Thinking about the Truth Force this morning has made me think again about why I feel so strongly about patient advocacy. I know that trying to make change from the point of view of a victim is difficult. I need to find a bigger understanding and force to hold onto, which will be the central driving purpose in my advocacy. 

What are your reasons for wanting to make changes?

I miss my dad

This is my dad. And me. Circa 1983. Note and appreciate the matching Laura Ashley wallpaper and curtains.

Today is my dad's birthday. Or at least it would have been, if he were still alive. He would have been 62 today.

My dad died three years ago. Time has dulled the pain of his absence enough that I can think of him without feeling that the breath has been knocked out of me, but I still don't know how to treat his memory; his birthday and the anniversary of his death. 

Dad was a very private man. He loved Manchester United football team, his family (possibly in that order), books, music and films. He laughed generously and often, and loved to play mischievous tricks. He loved words, and playing with words. 

I still find myself storing things up to tell dad. New words, jokes that would make dad laugh, books and films that he'd love. I feel so sad to think that I can never share these things with my dad again. It diminishes my pleasure in life knowing that I can't share any of the things I love with dad.

Richard and I saw Bill Bailey live on Saturday. I loved the show, but found myself thinking over and over how much my dad would have enjoyed it. I desperately wanted to share with dad the word, incretinate. To make stupid, cretin-like. I wish I could share Tim Minchin's song, Prejudice. Dad would have got even more joy, if that's possible, than I do from the use of the word homonym. 

My dad loved Hilary Mantel's Wolf Hall. He was so jealous, as I started reading it, that I would get to spend time with the characters that he'd followed. I felt so sad, reading the fabulous sequel that dad would never read, and learning what happened next. 

I feel deeply and intensely grateful that my dad passed on his love of life, his humour, his interest in books, films, politics and music to his children. I wish that I could still share these things with my dad. 

I wish that I could just have one more year of forgetting dad's birthday, exchanging books, poetry, films and music; of timing my phonecalls to coincide with the football half time (or full time), hearing dad's tone change from reluctant 'hello' to delight at hearing from his favourite (only) daughter. 

I never questioned my dad's love for me or my siblings. He took such delight in all of us, and celebrated our differences. He was interested in everything that we loved, and listened so intently as we shared our lives and interests, from rugby to classical music, the psychology of teaching to politics. 

I want to celebrate my dad on his birthday, but I still wish so much that he were still here.

Only Our Minds Disable Us

Of the hundreds of tweets that have floated past my eyes recently, one in particular stood out for me (I'm going to gloss over the one about 'cockwombles').

It went like this:

"Never a fan of hearing 'only our minds disable us' coming from anyone, especially high profile disabled people. It's not a helpful message"    @pseudodeviant

It is a comment about the view of disability that portrays people with disabilities as able to achieve powerful things by determination alone. I was utterly glued to the Paralymics this time last year. I was transfixed by the incredible feats of athleticism from people who only a generation or two ago might have spent their lives in institutions. Let's take the wonderful Sophie Christiansen OBE as an example. Sophie is 25 years old. She has competed as an equestrian in three consecutive Paralympic Games, winning medals at each one, including five gold medals in London last year. Not content with being a phenomenal athlete, Sophie also has a first-class masters degree in maths. 

I don't want to take anything away from Sophie and the other Paralympians, who have obviously dedicated themselves to their sports, and all the commitment and mental and physical strength that entails. Winning a Paralympic medal (or heck, even just qualifying for a Paralympic Games) is an awesome achievement. 

However, in my experience, there is a tendency for people to make comparisons. Often, the comparison is not very specific. I am perhaps one of the least athletic people in human history, and yet I couldn't count the number of times I've been asked if I've considered competing in world class sport, simply because I have a visible disability. For the record, no, I haven't considered it. Day-to-day life is more than enough of a challenge for me. 

During the Paralympics, the message of hope was repeated like a mantra: set your mind on it, and you can achieve anything. 

In my own personal experience, that just doesn't ring true. One of the things that I find most difficult about my condition is its unpredictable nature. Almost every day I am determined to do things, and almost every day my body rebels, leaving me flat on my face, flat on the sofa, or in hospital yet again. I push myself to socialise, bake, knit and read, and most recently, to go out every day. Sometimes it works, and I appreciate the wisdom of those motivating chants. Other times my body insists on full payback. It is during those times that I struggle most with feelings of inadequacy and guilt. 

I try to be forgiving of my body's weakness, working patiently to increase my strength and stamina, despite the symptoms that I experience of a daily basis. Improving my attitude is a big part of increasing my quality of life, but it has to include acknowledgement of my disabilities. My achievements are made with the body that I have. I have to know my weaknesses and work with them. 

I have encountered plenty of people with negative attitudes towards their disabilities. Those who drop everything and wait to get better before they can get on with their lives; those who refuse to do anything for themselves; those who allow their condition to take over every aspect of their lives, or who become bitter and angry. These people, although their disability is in their body, also shackle themselves with their minds. 

Disability is not all in the mind. A good attitude is unlikely to produce miracles, but a bad one will always drag you down.  As one of my friends used to say, "Love life. Dream big. Be positive!"

On Being Neurotic (or not)

One of the things about being a young female with multiple troublesome symptoms is that at some point, it is almost inevitable that a medical professional will suggest that there's an element of neurosis.

In the best case scenario, there is incontrovertible evidence of physical disease and/or you find a team who believe your pain and other symptoms, and are prepared to work with you to find solutions.

The worst case scenario (and there is no fiction in this) is that the words 'neurotic' or 'hysterical' attach themselves firmly to your medical record, colouring every decision and every consultation. It's very hard to get an independent opinion on anything if even new doctors have those perjorative words ringing in their ears. If your doctor is convinced that you're the sort of anxious soul that makes mountains out of molehills it can be almost impossible to get any investigations done, let alone appropriate treatment.

Thankfully, although there have been plenty of doctors and nurses who've suggested that I'm 'just anxious', the physical evidence has always been there to convince them otherwise. I remember once as a teenager being wheeled into the A&E department of my local hospital by paramedics, in the middle of a severe asthma attack. The first nurse that we encountered told me very briskly that she couldn't hear a wheeze, and therefore I was probably having a panic attack, and should really pull myself together. Of course, when the doctors came in, they checked my blood gases (a measure of oxygen and carbon dioxide in a sample of arterial blood) and found that my oxygen was critically low and my carbon dioxide was beginning to rise. Both of these are signs of potentially life-threatening asthma. The reason that there was no wheeze to be heard was that there was almost no air moving in or out of my lungs. This is not generally considered a sign of teen angst.

Needless to say, I didn't die from that particular asthma attack (or any of the others that I've had since that time), but it scares me to think that the prejudices of one single person could have had very nasty consequences.

 I have heard many horror stories from other people, particularly those with gastroparesis, which is hard to diagnose without a high index of suspicion. The symptoms, much like a psychiatric eating disorder, can include vomiting after meals, aversion to food (hardly surprising if it always causes pain and/or nausea/vomiting), weight loss, bloating... If a 'diagnosis' of an eating disorder with attention seeking behaviour is made before a gastric emptying study can be performed, the person with gastroparesis may be sentenced to months or even years of inappropriate treatment and suffering before getting a proper diagnosis. Of course I assume that eventually they will succeed in getting a diagnosis and effective treatment. Everyone likes a happy ending.

The suspicion of neuroticism seems to rise in proportion to the number of vague or unexplained symptoms. Therefore syndromes like Ehlers-Danlos, systemic lupus erythematosis, and so many other syndromes or illnesses have a high proportion of people who were diagnosed long after first presenting with symptoms. In some cases this is down to lazy thinking or lack of knowledge. I freely admit that Ehlers-Danlos is rare, and therefore not at the top of the list of differential diagnoses for most doctors, but when a patient presents repeatedly with a host of unexplained symptoms, sometimes there is a link, and sometimes that link is a physical condition that can (and should) be treated.

Of course I understand that doctors do see patients who are neurotic or have health-related anxiety; people who present with mysterious symptoms that don't respond to conventional treatments. My plea to doctors would be to keep the flame of diagnostic curiosity burning, even if it's right at the back of your mind. By all means, encourage people to develop non-medical coping strategies and try to reduce the number of inappropriate investigations or invasive treatments, but keep your mind open, and be prepared to pursue a non-psychiatric diagnosis if the evidence seems to be pointing that way.

"When the facts change, my opinion changes" - John Maynard Keynes

I'm Coping (aka Managing Expectations with Doctors)

Crystal from LivingWellWithGastroparesis.com commented recently that she has a standard answer when people ask her how she is: "It's been a lot, but we're hanging in there."

I say the same sort of thing, and wonder how many other people gloss over the difficulties inherent in living with a chronic illness of any kind.

One of the problems for me is that I smile a lot. I don't drop the smile for many people, even for my doctors, so the general consensus tends to be that I am doing well. As a result of this, I somehow managed to slip through the net of follow-up with my gastroenterologist. I thought that I was doing ok, and that I could cope without any help. My doctors thought that I was doing ok because I didn't contact them to find out why I hadn't been sent an appointment.

By the time I did see my doctor (at least nine months later than I should have seen him) things were not good. I was severely anaemic, acidotic, and almost bedbound. I told my doctor that things were not good, and he immediately arranged for me to be admitted to hospital. I couldn't even cry with relief because I felt too ill. Instead, I lay across the seats in the waiting room and concentrated on not vomiting while I waited for a bed on the ward.

How did things go so wrong?

I think it started when I left hospital. I had been in hospital for almost a month, and was desperate to be allowed home because we had guests coming to stay with us. This deadline meant that I absolutely jumped at the chance to be allowed to leave, and didn't make sure that everything was in place to support me as an outpatient.

When I left hospital last year, on a Wednesday or Thursday night, I didn't even have enough medical supplies to get me through the weekend. I had no follow-up arranged with either my Gastro doctor or dietician, and couldn't get hold of my GP at such short notice. I was being sent home on tube feeding, having not reached any of the feeding targets set while I was in hospital, and without any clear guidelines.

How will this admission be different?

While we know more about the problems this year, and have a clearer diagnosis, the situation isn't that dissimilar. I am actively losing weight (one of those rare situations in which this is not considered a good thing!), am malnourished, anaemic, and experience severe pain, nausea and bloating in response to even the lowest rate of tube feeding. Last year we tried a number of different feeding preparations (low calorie, high calorie, semi-elemental) and lots of different ways to increase the rate. We tried feeding at a very low rate, 24 hours a day, and gradually increasing. We tried increasing rapidly in an attempt to shock my body into cooperating. We tried regimes that involved timed increases and decreases in rate. Nothing really worked, and nothing has really changed.

Currently, I am on TPN (complete nutrition, given to me through a drip into a large vein). It's great as a short-term solution to stop the weight loss and provide my body with some of the nourishment it so badly needs, but there are serious risks and complications, so we are all working towards getting my gut working!

Before I go home, I need a plan to follow - how we are going to increase the rate of feeding (or how I'm going to stay nourished and hydrated), and I need to know who to contact if things go wrong. Going wrong is something that also needs to be carefully specified - I want to have clear goals so that I know if I'm not meeting them. I want to have a time frame in mind, with an appointment booked for the end of that trial period.

I've talked about 'SMART' goal-setting in the past (as described by Paul Meyer in Attitude is Everything), and this is something that I intend to use again when we're discussing how I'm going to manage when I leave hospital.

1. Specific goals, and a specific plan telling me how to achieve those goals (e.g. increasing the rate of feeding by 1 ml/hr per day, up to a target rate of 80 ml/hr)
2. Agreed parameters for me to Monitor/Measure so that I know if things are not going according to plan. This is important. Doctors (and other medical professionals) are often vague about this, saying "Get in touch if things get any worse (or if things don't get better)". This leaves people with the dilemma of knowing that things have deteriorated (but maybe not enough to bother the doctor), or not improved (but maybe they should give it another day or two). Numbers are helpful, e.g. body weight, calories per day, pain score.
3. It is important for the goals to be realistic and Achievable. Nobody benefits if I go home from hospital intending to gain 1 kg every week and increase my feeding rate by 20 ml/hr every day. We know that my body can't tolerate that sort of feeding rate. Setting unrealistic goals is one of the surest ways for me to get disheartened, and probably end up back in hospital, sicker than I was before.
4. The goals and things to monitor must be Relevant to the situation. Monitoring my blood pressure or body temperature, for example, are useful things to do, but aren't directly relevant in determining whether I'm meeting my nutritional goals. Try to narrow down the list of things that can be measured to ensure that you focus only on the most important. Anything else just clouds the issue.
5. Set a Time limit on your goals, and be sensible about it. When I leave hospital after this admission, I hope to have gained weight and to have increased my body stores of various nutrients. This might be enough to keep me alive for several months, even if I fail miserably at tube feeding, but it would be far better for me to meet with my gastroenterologist or dietician after 3-4 weeks to discuss progress than for me to keep plugging away at my goals, independent of medical supervision, until I am a skinny wreck! Timely progress assessments will allow me to modify my goals and methods, and to put extra support in place if necessary, before I crash and burn.

In addition to the SMART categories, I will ask my team for their 'deal breakers'. These are the things that cause all other plans to grind to a halt. In my case, getting a high temperature has its own set of rules. If I start to run a fever, the SMART plan goes on the back burner and I have to seek urgent medical help. A more relevant deal breaker might be if I drop below a certain body weight, or fail to meet my daily calorie target for a specified number of days. These things are important enough toindicate that the current plan is not working, and that we need to regroup more urgently and come up with a new plan.

It is helpful to have these 'deal breakers' written down and specified, with a plan of action in each case. This is often presumed to be in the realm of common sense, but I can promise you now that my common sense goes out of the nearest window when I'm trying to avoid a hospital admission. Having a written (and agreed) protocol in place means that I have no 'wiggle room' to pretend that I didn't understand, or didn't think it was that serious.

I've been quite specific in my examples, referring to my own struggles with my digestive system, but this could just as easily apply to someone with rheumatoid arthritis, lupus, asthma or diabetes. Or pretty much anything else. Substitute your own symptoms and goals, and there you have it!

A Sign of Progress

I have lots of medical supplies in my bedroom. Most of the supplies are stored in our garden shed, and the majority of the medications that are important enough to be in the house are stored downstairs. Upstairs medical supplies are mostly things that might be needed in an emergency.

Most of the supplies upstairs are stored in the drawers under my bed, neatly organised for easy access. In these drawers, I keep various dressings and splints, monitoring supplies and medications that I might need if I'm stuck in bed.

Next to my bed I have a set of drawers on wheels. This contains things that I use daily, organised so that I can find what I need (I'll take some pictures for another blog post). Each drawer only contains a couple of different things, out of necessity, as I often find myself rifling through these drawers when I'm half asleep, or trying not to wake my husband.

On top of the set of the drawers is a tray. This tray holds a pair of gloves, alcohol gel and alcohol wipes; syringes filled with pain medication and antihistamines, anti-inflammatory gel, scar gel, and my epi-pen. Overnight, this is where I keep my oxygen sats monitor, thermometer and blood glucose monitor (and glucose tablets). There is a torch at the front of the tray so that I can find things in the middle of the night.

Last night I needed my inhaler.

I looked on the tray, and didn't find it. I looked through each of the three drawers beside my bed, then in the drawers underneath my bed. I looked in the coolbag at the end of the bed (medications I take with me if I'm going out).

There were no inhalers in any of these places.

Eventually I gave up and asked my husband to get a new inhaler from one of the downstairs storage boxes.

It wasn't an emergency, and I certainly wasn't anxious that I couldn't find an inhaler (I found my nebuliser straight away, but decided that I would rather use an inhaler).

The significance of this only hit me this morning.  I have had very severe asthma for most of my life. I can barely remember a time when I haven't carried an inhaler with me. I have inhalers and nebulised medications in every handbag, along with an epi-pen, steroids and antihistamines. I even keep a hospital bag packed at all times, ready to be grabbed on the way to the hospital (often by a paramedic), which contains lots of asthma medications, as well as a washbag and change of clothes.

 But I haven't needed to use the hospital bag for eight months. EIGHT whole months without an emergency hospital admission. I haven't had an admission for asthma since 2011. Those of you who have known me for a while will gasp at this, I'm sure - I spent five months of 2011 in hospital with asthma, and averaged 6-12 asthma-related hospital admissions a year for many years. A year without severe asthma seemed completely unthinkable.

The fact that I didn't have an inhaler close to the bed amazes me. It isn't just that I have been surviving at home with severe asthma - things have been unimaginably well-controlled for longer than I ever could have expected. Of course, I'm still on high doses of maintenance medications, but my lungs are doing what they were made to do!

One of the first things I did this morning was to restock all the places that should have held inhalers (I don't want to jinx myself!), but every unopened inhaler box felt like a celebration!


But I have