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!