If I could do anything as a health activist...

Money is no object - this is pure wishful thinking.

If I could do anything at all as a health activist, I would create a requirement (and the funding) for every hospital and large GP practice to employ a Chronic Illness Advocate. This person, and I would love this job, by the way, would work with patients who have chronic illnesses or disabilities to ensure continuity of care.

Patients with chronic illnesses often see numerous specialists at lots of different hospitals. In many cases, they are the only person who is able to see the 'big picture'. When something goes acutely wrong and they are admitted to hospital, doctors often focus only on the acute presenting symptom. They may not remember to prescribe asthma medications to the patient admitted with abdominal pain, or anti-nausea meds for the patient admitted with asthma. They may fail to consider the fact that the patient isn't eating or drinking adequately, that they get dizzy when they stand, or that they are a 'hard stick' when it comes to IV access. They may also fail to consider how the current problem may impact on their patient's existing medical conditions. 

The imaginary (but wonderful) Chronic Illness Advocate would help the patient to coordinate all aspects of their care, across numerous medical and surgical specialties, and between different hospitals and clinics. They would take time to talk to the patient about all their symptoms (not just the edited list that can be given to the doctor in 10 seconds), help them to keep good records of their medications, allergies and other important information, and consider longer-term and proactive interventions. Among other things, they would consider:

- Nutrition:
Is there a need for weight loss or gain?
Are there any nutritional deficiencies that need to be corrected?
Is there a possibility of food intolerance/allergies contributing to symptoms?
Is the patient able to shop, prepare, cook and eat adequately, or do they need help with this?

- IV Access:
Does the patient have difficult veins? If they are likely to need significant periods of IV access over 6-12 months, or if emergency IV access is a priority, consider longer term IV lines (e.g. midline catheter to be placed on admission, PICC for 6-12 months, port-a-cath for long-term but intermittent use, Hickman or Groshong catheter for long-term continuous use).

- Complicated Medical Conditions:
Can the patient be 'flagged' to local ambulance services and emergency departments?
Could the specialist(s) prepare a protocol to be used for anaesthesia or in an emergency?

- Social and Psychological
Is the patient receiving all the help he/she needs (including state benefits)?
Would the patient benefit from (or like) counselling?
Would the patient benefit from physio/OT or social services assessment prior to discharge?

I could go on and on. Doctors and nurses in acute medical units are often too rushed to take in the whole history if it's complex, and are often so focused on the current problem that they don't deal with 'non urgent' abnormalities in blood results, or follow up on 'irrelevant' symptoms. As a result of this, patients often end up advocating for themselves - researching intensively into their own conditions and symptoms, checking their own blood results against normal values, checking their medications for side-effects and interactions. Most of us were not trained to do this, and even if we were, isn't it difficult enough when you're not feeling well, without having to be nurse, doctor, psychologist, lawyer, accountant and everything else at the same time?

The Chronic Illness Advocates would be based in a Complex Care unit. This unit would be staffed by doctors and nurses, physiotherapists, dietitians, occupational therapists, pain specialists, psychologists and social workers. Oh, and Adult-Life Specialists for distraction, play therapy, guided imagery, adult education classes, arts/crafts/gardening/other skills, and preparation for procedures. This unit would see complex patients as outpatients, along with visiting specialists, would house medical records and protocols for their patients, and would admit complex patients to their unit for multidisciplinary care. There would be pleasant places to sit, to eat (or just get a coffee); the walls would act as a gallery for local artists and photographers to display their work; there would be relaxation classes and yoga in the physio gym out of hours, internet access and a library, and various interest groups for patients.

Not only would this unit provide top-level care for patients with complex medical conditions, but they would also act as an informal meeting point and support network for patients, who often don't meet others 'like them'.

While it's generally recommended that multidisciplinary care is the gold standard for many chronic conditions, this doesn't often happen. In the meantime, I continue to be my own Chronic Illness Advocate, keeping extensive records and protocols that I can take to hospital appointments and admissions, keeping track of my own blood results and finding out as much as possible about ways in which I can improve my health and quality of life, both medical and non-medical. I try to support others with chronic illnesses, both online and offline, with friendship and information.

But I can still wish for the day when everything I've described above could be reality...

Five Things

So, yesterday - no blog post.

Just another little reminder of how things can just change in an instant with this particular condition. I got dizzy and blacked out, as happens sometimes with my autonomic dysfunction. I fell and dislocated my hip and shoulder, and spent the night in hospital having them put back. The hip was pretty straightforward (though painful), but the shoulder, as ever, was temperamental and took several attempts. While I was there, it was incidentally discovered that my sodium was critically low at 121 mmol/L (135-145 is normal). It's never just one thing, is it? I had some IV fluids and other medications, and came home late this morning.

In light of that, the topic for today seems rather appropriate - 5 things that changed my life. I've been ill for as long as I can remember, so there's no life-altering accident, or date that I can pinpoint as an anniversary of 'the illness'. Just day after day, deterioration after deterioration (and some pretty impressive improvements in between, for balance); as I've aged, more and more body systems have been involved, and I've needed more and more medical interventions in an attempt to maintain the status quo.

So what has really definitively changed my life?

Accepting that this is my life, and that no amount of wishing or worrying will change that. I am in awe of the beauty and majesty of this planet, and of the complexity of life, and I am so grateful to be here and alive. Yes, there are days when I weep and wail and bemoan my lot in life. Experiencing symptoms day in and day out is tiring, both physically and emotionally, but accepting the reality of it has given me the freedom to experience life more fully. I am better at looking after myself, and find it easier to reach out to others as a result. I try not to waste the opportunities that I have - those precious days when I have the chance to do something new or fun, and feel well enough to seize that chance!

Meeting my husband opened up a whole new world for me. Until that point, although I'd had boyfriends, I'd always wondered, secretly, whether there was an element of pity in the way that they viewed me. Not so with this one. I feel so lucky to be in love with a man who loves me wholeheartedly, accepts my limitations, praises my achievements, supports my ambitions and is by my side through everything. He is a remarkable and wonderful man!

Physics (or accepting that I am a supergeek) was another life-changing moment. Until I started to study physics to an advanced level, I'd always thought of myself as very average intellectually. Physics changed the way that I look at the world and the way that I look at myself. The more I learn about this complex world and some of the scientific processes underlying the way that it functions, the more awed I am.

Learning that there isn't always a quick fix. Doctors (especially surgeons) really, really want to be able to fix their patients. It's hard for them to accept that there isn't always a quick fix, or even a fix at all, and often even harder for them to relay that information to their patients. I would love to be able to have an operation that would fix even just one part of me, but in reality every intervention has knock-on effects. Sometimes the best option is to focus on quality of life and symptom control, rather than longing for that one definitive treatment that will make everything perfect.

Rescuing an elderly cat with health problems from a shelter, where the vets advised me that they didn't think she'd live much more than a year. Not only has Nutmeg given me four years of constant, adoring and loyal companionship, she has also helped me to focus on quality of life for myself, through the decisions that I've made on her behalf. Nutmeg has kidney failure, and her life could be prolonged with a special diet and daily medication. After a month of both, we realised (in discussion with our vet) that she was so miserable that it would be better for her quality of life to have a normal diet and no medication. We are so grateful that she now jumps around with excitement every mealtime, showing energy that we know she shouldn't have...

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

The Time-Travelling Postman

Jo (L) and Jenne (R), March 1999

Dear 18-year-old-me,

Don't be alarmed to hear from me. I am your future self, and I have a few pieces of advice. Of course, it's entirely up to you whether you pay any attention, or just assume that I'm some prankster. I don't mind either way, but please read to the end before you make up your mind.

Firstly, I would like you to know how beautiful you are. Yes, I know your face and body have changed shape because of medications; that you have surgical scars, hearing aids, glasses, braces, and sticks, and that your hair has a mind of its own, but you're focusing on the wrong things. You have a beautiful and infectious smile, and your enthusiasm, generosity, kindness and zest for life attracts people to you, and will continue to do so in the future. Continue to smile at people, even when things are hard - it's one of the things that makes you feel good.

I understand that things are hard, physically, but don't let it be burdensome to you. It might be that one day things will be even worse, and I don't want you to regret the things that you didn't do. Take lots of photographs - of yourself, of your friends, of your family, and of the world around you. Even take photographs of the bits that you don't currently want to remember. Even the rubbish bits are part of your story, and this story is the only one in which you play a starring role.

Despite all your doubts, you will love and be loved in return. You may not achieve everything that you set out to do, but don't let that stop you from trying. You might just surprise yourself!

Try to find a balance between taking care of your fragile body and living life as fully as possible. Like most people, you'll get it wrong sometimes, but remember that you don't drown by falling in the water; you drown by staying there (that's a quote by E. L. Cole). Don't be afraid to ask for help as part of finding that balance. There are no medals for pushing yourself up mountains in a manual wheelchair, and you'll have blisters on your hands for weeks. You might think that getting to the top of the mountain under your own steam is worth a few blisters, but there there will be other times when sharing the workload is the right thing to do.

Don't antagonise your doctors. You'll always be an expert in your own conditions, but you need other experts to work alongside you. That doesn't mean that all doctors will offer good advice, or do the right things in an emergency, but don't give up hope - they're only human. Having advised you not to antagonise your doctors (or nurses, physios, OTs, dieticians, etc.), I still want to encourage you to do your own research, and to become a good advocate for yourself. Don't be afraid to speak up if you have ideas or questions. Good doctors listen to their patients, and there are lots of good doctors out there.

In our society people often define themselves by what they do and what they achieve. I would recommend that you find other ways to define yourself - perhaps by your characteristics and personality traits. Your physical abilities will change over the next few years, but you will still be YOU, and you will be loved for who you are, not what you can do. With that in mind, don't be afraid to tell people what's going on with your health. I doubt you'll listen to this particular piece of advice, but you'll get more visitors in hospital if you tell people you're there!

Finally, I want to tell you again that you're beautiful. Take it on board and allow yourself to feel confident in who you are. Live life as fully as you can, and encourage those around you to do the same.

With much love,

Your future self

PS. Make it a rule never to leave the house without wearing lipstick - it'll make you feel better

Richard and Jo, August 2011

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

If Anyone Were Stupid Enough to Televise My Blog

It would be a cross between House MD and Martha Stewart. It would have to be shown weekly rather than daily, as I don't do much in an average day. Let me tell you a little more about my day-to-day life:

In addition to my GP, I see 14 different specialists at six different hospitals. I am currently procrastinating about adding a further seven specialists to my team.

I use 19 different medications daily.

It is rare for me to be able to leave the house more than once or twice a week. These trips are often based around medical appointments, though I do try to include fun things when I'm out, such as buying flowers, visiting the greengrocer, or stopping for coffee. If I'm really lucky, I might make it out to a craft shop, where I could happily spend an hour just looking at things, and stroking the various yarns.

What I can do varies daily, depending on the severity of my usual symptoms, and depending on which joint(s) are least stable/most painful.

I love to make things. It gives me a feeling of great satisfaction to have created something beautiful, whether it's food, a knitted item, or even just some labels for my kitchen. There are days when I feel that I am no use to anyone. Sometimes I can go for days without having a conversation with anyone except my husband. Creating things makes me feel as though I am contributing something, however small, to the world.

When I am not well enough to make things, I like to plan. OK, so I might not actually be able to redecorate the guest bedroom, or reorganise the study, but I can pick out colour suggestions, choose furniture and come up with some pretty neat storage solutions. Thankfully, I have a husband who is happy to help make my ideas reality!

When I am well, I am often able to potter around the house, doing little bits here and there. I like to stay on top of the housework (I'm lucky in that I have lots of help) and like to have systems for everything so that things can run perfectly well without me. This works well, and is necessary for the times that I'm in hospital (about two weeks out of every six). Having systems is not only invaluable at home, but is literally a lifesaver when I'm admitted to hospital in an emergency. I'm not always well enough to give doctors all the information that they need (including numerous severe allergies to foods and medication), so being able to hand over a folder that tells them everything they need to know is such a relief.

Not really TV material, but there you have it - maybe I'll introduce you to some of the systems that I use to make life easier for myself and for my husband as a consolation prize!

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

The Book (and a bit of an explanation)

November is National Blog Post Month.

It is also:
Native American Heritage Month
Pancreatic Cancer Awareness Month
COPD Awareness Month
National Novel Writing Month
Alzheimer's Disease Awareness Month
American Diabetes Month
Lung Cancer Awareness Month
Crohn's and Ulcerative Colitis Awareness Month
National Pomegranate Month
National Homeless Youth Awareness Month
Movember (in aid of prostate cancer research)
and International Drum Month

Most of those are entirely beside the point, but happy November anyway.

My reason for telling you that it's National Blog Post Month is by way of explanation for what is about to happen. Those nice people over at WeGo Health have suggested 30 different health-related blog topics; one for each day of November, and still being a bit of a newby in the blogosphere, I've decided to participate.

The first challenge is to come up with five working titles for an as-yet-unwritten book by yours truly.

1. The Uncertainty Principle:
Living with chronic health problems can be an unpredictable business. Even the very best laid plans can be thwarted at the last minute by pain, fatigue, or other symptoms. A severe flare-up or hospital admission can upset plans for days or weeks at a time. Yet we live in a society that runs according to schedule, which is full of deadlines and appointments, and in which unreliability can be seen as unforgivable. This book is full of real-life examples and practical tips to help people with chronic illnesses and their families balance the varied demands of illness and the outside world.

2. The Chaos Theory:
The world of chronic illness is full of important numbers: blood test results, drug doses, hospital patient ID numbers, telephone numbers for specialists, lung function results. The world of chronic illness is also full of long words, important dates and times, and paperwork. In an emergency, or when illness impairs mental clarity, recalling all these important details can be next to impossible. This book will guide you through the process of creating your own set of detailed medical records for reference, along with a concise emergency file containing the most important medical information.

3. Thank You for Today:
In this fast-paced world it can be easy to forget to notice the people and things around us that are beautiful and special. When every day revolves around symptoms, medication, testing, appointments and all the emotions that go alongside the practical aspects of chronic illness, everything else can fall by the wayside. Taking time for gratitude, and planning pleasurable moments into each day can shift the focus away from the illness and back to the person underneath the illness. It's all about you!

4. Capturing the Moment:
Those of us with chronic illness are probably not going to get better. We are not 'out of the game' for a day or a week, but for months or years. Some of us are going to die before 'our time'. How can we find ways to participate in life as fully as possible, while still making sensible health-related decisions and managing our symptoms to the best of our ability? We may not be able to get outside to see holiday decorations, host a large gathering, or eat special seasonal meals, but that doesn't mean that we shouldn't celebrate. This book brings both ordinary and extraordinary celebrations into the home, and provides ideas and suggestions about recording these memories to create a legacy for loved ones.

5. The Gourmet Guide to the NHS:
The definitive guide to eating in the NHS. All hospitals are given a rating, based on quality, originality and presentation of the food, as well as the seasonality of the ingredients used. Special features, such as wine lists and scenic settings are given special mention. Those hospitals that provide a tasting menu (with or without paired wines) are listed separately. This guide will be indispensable for all those planning to sample NHS hospitality.

What do you think? What would your book be about? What would it be called?

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

The Hot Water Bottle (and Other Stories)

Apparently, I learned this week, it's not normal to pack a hot water bottle for every trip away from home, or to use it constantly. I love my hottie!

Not only is it immensely comforting to have something warm to cuddle, it helps me to regulate my body temperature (something that my body is incapable of doing without help), and helps to soothe those myriad aches and pains.

At home, I have two hot water bottles - one of them has a knitted cover, and the other has a fleece cover. I find that concentrating on different textures and temperatures can distract me for a while when I'm taking life a few seconds at a time.

That's not supposed to sound melodramatic. It's just how things are sometimes.

Three of my main symptoms, pain, nausea and shortness of breath, can seem all-encompassing when severe. My world seems to shrink (or the symptoms seem to expand) until it's just me and the pain. Using all my senses to cling to the edges of reality gives me the illusion that I still have control over my world. I strain to notice every sound, every scent, every texture, temperature, taste, shape and colour.

Having said that, I realise that there are also times when I can't cope with even the smallest sensory input. My autonomic nervous system (the one that controls temperature, blood pressure, heart rate, etc.) is already so confused that sometimes even just light or sound can be enough to trigger everything to go pear-shaped.

My advice to myself seems almost contradictory:
1. Go with the flow
2. Be prepared

My symptoms can be unpredictable. I have no way of knowing when any particular joint (or joints) might dislocate, causing horrible pain; I can't control my autonomic nervous system, my blood sugars, energy levels, gastrointestinal symptoms or breathing. Sometimes things go wonderfully, blissfully right, and other times they go horribly, uncontrollably wrong. I don't get much of a say in which way things will happen, but fretting about it doesn't help.

What does help is planning ahead and having the right 'kit' to hand. I try to keep plans as flexible as possible, depending on symptoms, and when I do go out, I try to be prepared for all (well, most) eventualities. My handbag is sizeable. My husband says that it's bigger than the world, which is almost true. I do, on occasion, feel like Mary Poppins, pulling useful item after useful item from its cavernous depths.

The contents of my handbag are worthy of their own post. Watch this space...

The cat likes the hottie too

The Face Behind the Mask

I confess. I do it. Maybe you do it too. Before leaving the house, or even picking up the telephone, I take a deep (ish) breath and slap on a big smile.
My reasons for doing this are many and varied. I don't want people to feel intimidated or uncomfortable by seeing that I'm having a bad day. Or even just what I consider to be a normal day. People have enough problems of their own without worrying about mine, I tell myself.

Wearing the 'big smile mask' does have its benefits. No-one wants to live inside a perpetual pity party, and sometimes you do have to fake it to make it. Far from being hurt or offended when people tell  me that I don't look sick, my mask awards itself bonus points. I'm saddened when people offer me a seat on the bus; sometimes I tell myself that I must look radiantly pregnant, rather than pale, dizzy and nauseous.

I try to forget about the face behind my smiling, kind, generous and bubbly mask. The face that sometimes just wants visitors to go away so that it can be freed from the stifling burden of the mask, but that resents the loneliness and boredom of being mostly housebound and alone. The face that is pale from anaemia (and from lack of sunshine, and from the autonomic dysfunction that thinks blood is better stored in my feet than my head); the eyes that are ringed with the darkness of too many broken and sleepless nights; the mouth that is twisted with pain. This face cries out for people to care, and for them to offer the help that the mask so proudly refuses

This face is part of my reality.

But maybe the mask is also a part of my reality.

The mask allows me to step outside myself. It allows me to feel that the smiles directed at me are friendly rather than pitying, and that offers of help are chivalrous rather than dutiful. It allows me to focus on being the me that is buried beneath the hefty weight of chronic illness.

Maybe, in fact, the mask is simply a copy of the 'real me' that has become trapped under another mask - the mask of chronic illness and disability. Displaying this mask, though an inadequate, pale imitation of what I might be without the illness, allows me to be me.

And with that, I take another (not very) deep breath, slap on some bright lipstick, and take my mask out into the real world with me.