Being Prepared for Surgery

Before we go any further, you should know that this blog post does not contain any medical advice. There are no exercises, no medications (or alternative remedies), no recommendations for tests or monitoring, and no diet guidelines.

So, if this isn't a medical guide, what is it?

This is a list of things that I do in the days or weeks before planned surgery to make my life easier in the days and weeks after the surgery. Of course, the nature of the surgery will change some things, but I'll try to be as general as possible.

Here in the UK, most people will know their surgery date at least a month in advance (for routine, non-urgent procedures). I like to use that time to think about the effects the surgery may have on my life while I'm recovering, and try to come up with as many solutions as possible before the problems have a chance to rear their ugly heads!

In my opinion, there is almost nothing worse than feeling weak and feeble, in pain, limited by wounds/dressings/plaster casts. Add to that the feeling of unwashed hair and skin, unwanted body hair, and flaking nails, and it's almost a recipe for disaster! Here are a few of the things that I do to prepare my body for surgery and to keep myself looking as normal as possible afterwards.

Hair:

Book a haircut as close to the date of your surgery as humanly possible - this will ensure that your hair looks as good as possible, even if you're not able to give it much attention. If you have very long, thick or curly hair, consider a change of style to one that needs minimal maintenance. This doesn't always mean short! My hair is wavy/curly and prone to frizz. Short styles, for me, mean endless conditioning and styling products and hours of blowdrying or using straightening irons or tongs. With a blunt cut just above shoulder length, I can get away with scrunching a little mousse through my hair and leaving it to dry naturally.

If your hair is coloured, make sure you get your roots done, preferably just before surgery, so that it will look fresh for as long as possible while you recover and build up enough energy to get to the salon for the next colour!

Styling your hair may be another hurdle, especially if the surgery affects your hands/arms/shoulders, or is likely to leave you feeling very weak. I recommend investing in the following basic kit:
1. Dry shampoo: Having hair that looks bouncy and freshly-washed without getting out of bed is like a miracle! If possible, try a couple of brands and stock up on cans of your favourite in various sizes. You may still need help to apply it, massage it in and brush it out again, but it still takes considerably less effort for both you and your helper than a full shampoo and conditioner, plus it doesn't leave your hair wet, so no risk of getting chilled (or getting wet bedclothes)
2. Alice bands and 'crocodile' clips: These are enough to hold your hair back from your face, even if you have one hand out of action. Some people find the fabric bands easier than solid ones, but I'm a fan of the solid ones. The wider the better, in order to cover as much hair as possible! Having the crocodile clips as well means that you can try out a variety of styles with minimal effort or assistance
3. A wide-toothed comb is great for gentle hair-styling (or just detangling); if you can get one with a long handle, so much the better!

If your surgery means that blowdrying your hair is not an option, there are two things you can do. The first is to resign yourself to having a different style for a few weeks, working with your natural hair texture. As you'll be giving your hair a break from heated styling tools, it's a good opportunity to use intensive deep conditioners. Put a soft towel over your pillow and apply the conditioner. Massage your scalp well, and then comb the conditioner through to the ends of your hair. It can stay there until you next wash your hair. Not particularly glamourous or attractive, but your hair will be in better condition afterwards! The other option is to book a course of regular blow-dry treatments at your hairdressing salon. It's a lovely thing to do to pamper yourself, and may be the only way to get your hair washed and styled properly if you have an arm in a cast, but consider how you're going to get to and from the salon if you're not up to walking and not allowed to drive.

Skin:

After surgery, you may not feel like keeping up with your usual skincare regime. I like to cleanse, tone and moisturise, and have various favourite products to exfoliate and moisturise my skin. This all goes out of the window after any surgery, but especially if I have an arm in plaster. Simple cleansing wipes are my saving grace - they remove everything (even betadine, chlorhexidine and EEG glue - all of which you may encounter during your hospital stay!), and leave my skin feeling lovely. At a pinch, you could use them to wash your body, but I wouldn't recommend doing this more than once! My top five tips for skin have to be:
1. If you wax, book a wax prior to your surgery: If you don't wax, think about whether you're going to keep up with whatever method you normally use, and whether it would bother you if you didn't keep up with it. Waxing lasts for 4-6 weeks for most people, and there's nothing quite like feeling smooth and polished when you're a bit weak.
2. Simple cleansing wipes
3. A pleasantly fragranced deodorant (I find spray easier than any other method of application)
4. A real sponge and a mild liquid soap: it's hard to rinse properly if you're washing in bed or in a chair, but it's not the end of the world if a mild soap stays on your skin - aqueous cream can be used instead of liquid soap - it doesn't feel particularly 'cleansing' but it does work, and it'll leave your skin lovely and soft
5. A luxurious moisturiser: it may be more difficult to apply, but having the luxury of my favourite scent as well as soft skin is worth the time it takes to apply it! There are lots of different types of moisturiser, depending on your needs - it may be easier to use a body butter that's almost solid and won't run everywhere, a pump dispenser, or a spray.

Cosmetic:

More than any other part of me, my face gives me away after surgery. It takes almost nothing to make me look pale and drawn, with dark circles around my eyes, and it is guaranteed to make me feel worse if I see myself in the mirror looking like that. Of course, there's always the option to just avoid the mirror, but let's assume that we generally like mirrors.

Before surgery:
1. Shape your eyebrows and wax/thread/pluck any stray hairs
2. Get your eyelashes tinted: this is cheap and readily available at salons, and will mean that you don't need to wear mascara for up to six weeks. I have no arguments for the pedants who say that you don't need to wear mascara anyway. I like to have dark lashes, and drawing attention to my lashes and big green/blue eyes is better than drawing attention to the dark circles around my eyes!
3. Invest in a cream blush, or even better, a cream product for cheeks and lips: I love the Benefit Benetint lip and cheek balm and Bobbi Brown's Pot Rouge in Powder Pink. Give me 30 seconds with either of these, and I'll magically transform into a healthy-looking creature before your very eyes.
4. Get a really good brightening concealer for under-eye bags and any other dark shadows that may emerge post-surgery: My intention is not really to promote lots of beauty products, but I use Clinique's Airbrush Concealer. I've used it for many years, and love it. It is also very easy to apply. Even with one hand. Even if that hand is your non-dominant hand.
5. Stock up on moisturiser and lip balm: Hospitals are dry places, and my skin is dry and flaky for days or even weeks afterwards, so I use a much heavier moisturiser than usual.
6. Choose some low-profile jewellery to wear while you're recovering: You'll probably have to remove all your jewellery for the surgery (you may be allowed to tape over a wedding band) but you'll need something simple to wear afterwards, if only to maintain piercings (don't forget about belly buttons, tongues, lips, etc. and make sure you have someone ready to put them back in for you after surgery if you can't do it yourself). I usually wear plain pearl or diamond stud earrings, a simple, light necklace, and my wedding and engagement rings, but no other jewellery. It's enough to keep me looking polished, and to keep the holes in my earlobes open, and that's all I need.

After surgery:
Get a manicure and pedicure: Don't make the mistake of doing this prior to surgery, as you'll just have to take it off, which is a bit of a nightmare if you have a gel or shellac manicure. Once you're safely out of the hospital, book yourself in for a mani-pedi, preferably with gel or shellac polish, which lasts for a couple of weeks without chipping or flaking. I like to get a bright colour on my feet and a neutral colour on my hands - it does have to go with everything for two weeks, after all! If you're not well enough to go out for your manicure, you may be able to find a mobile technician who will come to your home, or even to the hospital.

After all this preparation, I'm sure you're just about ready to just get to the hospital so that you can have a break, but three last things:
1. Order some pretty seasonal flowers to be delivered a couple of days after you get home from hospital (unless you're likely to be inundated with floral gifts from friends), or buy yourself an orchid in bud, so that it'll flower when you get home and are there to see it.
2. Put fresh sheets on your bed ready for when you get back. If you're anything like me, this thought will sustain you through the hard first night in the hospital after surgery. I tell myself that I just have to get through this night (and maybe a couple of others) and then I can go home and snuggle into my lovely soft bed with the clean, fresh sheets, and that means that Everything Will Be Alright.

Acute and Chronic

After writing the last entry (about action plans - here if you missed it), I continued to think about what happens when chronic illnesses flare up enough for me to need help. How to identify the acute exacerbations of my chronic conditions and separate them out from the normal fluctuations of the conditions.

Actually, with asthma, it's relatively easy because there's something to measure. I can stagger into my local A&E and tell them (in between gasps) that my peak flow is 100, and everyone will agree that I need to be in hospital.

With other conditions, though, trying to determine when I need emergency help can be like trying to pin a tail on a moving target. For the record, I definitely do not try to pin anything onto my cat, when she is moving, or otherwise.

Soon after my most recent gastroparesis flare started, almost six weeks ago, my GP recommended that I needed to go to hospital for IV fluids and IV antiemetics (anti-sickness medication) because I had only been managing to keep down about 200 ml per day, was feeling dizzy, and was vomiting. About a week later, we had the same again - I was still vomiting, still struggling to keep fluids down, still feeling dizzy, and was only passing water about once in every 24 hour period.

Almost six weeks on, little has changed. I spent all day yesterday lying absolutely flat in bed because I was so dizzy and nauseous, only getting out of bed to vomit. Today is much the same, though I'm horizontal on the sofa for a bit of variety.

My gut feeling is that I need to go to A&E for a top-up of IV fluids and some antiemetics, but there's no objective measure to which I can point to say why today; why now.

I feel constant, severe nausea, but I felt that yesterday and the day before. I have been nauseous, to some degree, for several years. Why is today different?

I have struggled to take in more than a few hundred calories (most of which I vomit back up) and feel very dehydrated. But I've averaged 500 kcals per day for almost six weeks now. What's so special about today?

My blood pressure is low and my heart rate is high, making me weak, shaky and dizzy - that delicious combination of autonomic dysfunction and dehydration. But I was dehydrated yesterday. There is no measure of dehydration that can tell me why today is the day that I think I need help.

I could wait until tomorrow, but even tomorrow there will still be no standard; no bar below which I might fall, telling me that I must go to hospital. My symptoms tomorrow will probably be the same as my symptoms today, and my uncertainties will be the same.

I picture myself on arrival at the hospital:

Nurse: And how long have you been feeling like this?
Me: About six weeks
Nurse: And why have you come to us today?

That's the question I can't answer. Yes, things are bad; they're worse than yesterday and the day before, but could I continue at home? Yes, I probably could. Would I feel better after some fluids and medication? Yes, but I managed without them yesterday and the day before. It's like playing a giant game of chicken with my health.

I wish that there could be a measurement that would indicate exactly what my body needs. Like a petrol gauge on a car. I feel as though I'm currently running on vapour, but I have no way to check. At a better, calmer time, I need to discuss with my GP and dietician and come up with an action plan, similar to the one that I have for asthma, so that I know, without doubt, when I am safe to continue to cope at home, and when I need help from the professionals. Oh, and we need to come up with a better long-term management plan so that my gastroparesis is better controlled and I don't keep returning to this situation of 'firefighting' the acute problems.

Presently, in the absence of better measurements, I turn to social factors. Do I have important hospital appointments that I need to attend? Do we have plans to see friends or family? Is there anything really important that I need to do in the next 24-48 hours? Can I get to the hospital? Is it raining? Would it be easier to wait until tomorrow?

Applying this to today, I'm supposed to be celebrating my birthday tonight (with Richard) and tomorrow (with my family). As unwell as I am feeling now, I would rather be in an uncomfortable bed in hospital receiving IV fluids and IV antiemetics, surrounded by noisy, drunk and disruptive patients than struggling to stay upright and awake, and not vomit while 'celebrating' with friends and family. That a hospital visit sounds more appealing than birthday cake is enough to tell me that it's probably time for that trip to the hospital.

Taxi!

Setting Realistic Goals

Before you start, if you haven't read Flo's response to my post on Pacing (over at disabledmedic.blogspot.com) do it now - it's great!

Now, back to the point...

One of the things that I've been learning recently is how to set goals for myself.

This is how it used to go:
Jo: I don't do enough exercise. I'm going to go and spend an hour working out at the gym.
Jo goes to the gym, gets dizzy after 5 minutes, goes home and spends the rest of the day in pain and dizzy, trying to sleep.

This, clearly, was not a good way to go about achieving my goal.

It's very easy, when living with a chronic illness, to get discouraged because there are so many things that we can't do. I find myself obsessing about each deterioration and each perceived failure, while overlooking achievements as being too minor to 'count' for anything.

With this in mind, it's even more important to set good goals - realistic goals that lead to success. We might not succeed every time, but the more we do, the more positive we feel about our ability to achieve things.

I use the SMART system when I set goals for myself. This is an acronym that stands for:
- Specific
- Measurable
- Achievable
- Realistic
- Timely

It's important that goals should be specific and measurable - how else can you know if you've succeeded? It's not enough to say "I want to lose weight" - you need to set a measurable figure on your weight loss. This has to be a realistic number. If you're on high-dose steroids, for example, which have weight gain and increased appetite as a common side-effect, you may need to allow yourself more time to achieve your goal, or to set a smaller initial target.

Give yourself a time limit so that you know when to stop and check how much progress you've made. You may need to have more than one target - a long-term target and a short-term target. Aiming to lose 2 lb (1 kg) in a month sounds more manageable than aiming to lose 22 lb (10 kg).

Once I've set my goal, I think about the changes that I need to make in order to achieve my goal. Sticking with the example of losing weight, I might decide to drink water instead of fruit juice, and to eat fresh fruit instead of chocolate. I try not to make changes that I know will make me miserable. If you need chocolate or a glass of wine to get through the week, cutting those out will make you miserable and less likely to succeed. Don't forget to be realistic and honest with yourself. Cutting out chocolate or alcohol on one day a week is a good start!

There might be more than one way to get to your goal, e.g. doing more exercise and eating fewer calories are both ways to lose weight. People get very hung up on exercise (those who genuinely love going to the gym are the exception in my experience), but you don't have to spend an hour on the treadmill. Getting off the bus a couple of stops earlier, taking the stairs instead of the lift, or signing up to a dance class are all ways of fitting more exercise into your everyday routine. A pedometer is a good way of keeping track of how much walking you're doing.

Having set your goal and decided on the changes that you're going to make, decide on a reward for yourself once you've achieved this goal. This could be a small reward (e.g. a magazine, book, flowers or a bubble bath) for short-term achievements and a big reward (e.g. a massage, a new haircut, a new bottle of scent) for bigger achievements.

If you don't achieve your goal in the time you allowed yourself, don't beat yourself up about it. Consider why you didn't succeed and modify your next goal to be more realistic. You may need to make different changes.

Above all, be proud of yourself. Celebrate every success, no matter how small.

As L'Oreal would say, "You're worth it".

Creating Your 'Dream Team'

I've just read a book called Living Well With Gastroparesis, by Crystal Saltrelli (who has a wonderful blog). It's full of great information and advice about gastroparesis, and the general tone of the book is really positive. I didn't want to put it down!

One chapter that stood out for me was about creating a Dream Team of healthcare professionals. This is something that I've been working on with my GP - finding and bringing together a team of people who can help me with all my various medical conditions and can work together to help me to live as well as I can with the conditions that I have and the symptoms that I experience on a daily basis.

I absolutely love Crystal's term, 'Dream Team'. I want to have a Dream Team looking after me, and I want to be a member of this Dream Team. This is not just about healthcare professionals making decisions about me; this is my life, and I have to make the most of it.

I don't really want to talk about the whole Dream Team. After all, people with different conditions may have totally different needs. Today I want to talk about three members of the Dream Team, relevant to anyone with a chronic illness.

The first and most important person in the Dream Team is you. You are the reason that this team exists, so you need to be motivated. I've written before, and will write again about getting organised and about treating your healthcare as seriously as you would treat a full-time job, so I'm not going to go into details of that here, apart from a few key points:

1. Plan: Get information about your condition(s), your medications, possible treatments, and good doctors/nurses/therapists in your area. Don't be afraid to ask for recommendations from friends, or online from other people with your condition. 
2. Keep good records: This is really worth a whole post on its own, but keeping track of the reports that you get from the people that treat you, test results, as well as your own records of symptoms, anything that you measure (e.g. blood sugars, peak flow, weight), is invaluable. You are the only person that has all of this information!
3. Have clear goals: 'Getting better' is not specific enough. Creating goals is a particular skill, and one that I'm still learning! The more specific you can be with your team about what you want to achieve, the easier they will find it to help you, and the more motivated you will be because you are working towards something.

Every Dream Team needs a good primary care physician - someone who is able to coordinate things for you. This person might be a GP or they might be a specialist, depending on your situation. For me, it's my GP, as I have at least two 'main' conditions that cause all the other problems. Having a respiratory physician as my primary, for example, would be totally unsuitable for the orthopaedic problems, and vice versa.

GPs, as the name suggests, are generalists. This is their biggest strength, in my opinion. However, even generalists have special interests, and it may be worth asking at your local GP surgery to find out if any of the doctors have special interests in diabetes or asthma or chronic illness in general. At my local surgery, there is one doctor with a special interest in chronic illness. Unfortunately, she only works part-time during the week and not at all during school holidays. I started to work through the other doctors in the surgery, never specifying which doctor I wanted to see, with some funny and some disastrous results. Eventually, I found a fabulous doctor after a recommendation from a local friend. She works five days a week, and the standard two-week wait for a routine appointment is worth it to me!

So, what is this person's role within your Dream Team?

Firstly, a word of warning: even the most wonderful GP won't be able to do all the hard work for you. You still need to take responsibility for lifestyle changes, keeping good records, taking your medications, and contacting your doctor if you need advice or if you notice a deterioration in symptoms.

What your GP can do (with your help and co-operation, of course):

• Arrange regular screening checks appropriate to your condition and the medications you take, e.g. regular DEXA (bone density) scans for those with significantly reduced mobility or long-term use of corticosteroids (e.g. Prednisolone)
• Review your condition and regular medications routinely and after emergency treatment or acute exacerbations
• Prescribe medications to protect against known side effects: if you take NSAIDs (e.g. Ibuprofen, Naproxen, Diclofenac) for a short-term problem and this is changed to a long-term regular treatment, your GP might consider prescribing a medication to protect your stomach
• Refer you to appropriate specialists: this may be if you develop a new symptom that isn't controlled by standard treatments, if your usual medications stop controlling your symptoms, if you need surgical intervention (or just a surgical opinion) for a problem, or for various other reasons
• Liaise with your specialists, following up on recommended treatment or review. It would be lovely if your specialists could all write to each other after every appointment so that they're all in the loop, but in practice this rarely happens. A good compromise is to ensure that you and your GP get copies of all letters and test results so that the responsibility doesn't rest on your memory and medical knowledge to pass information between your specialists

In practice, especially for those of us with complex conditions, it can be very easy to fall through the gaps in the system. Specialist hospitals often consider their role to be that of advisors, leaving the routine follow-up to those more local to the patient. Unfortunately, local hospitals are often scared of complex patients, preferring to assume that specialist overview is all that is required. There isn't really an easy solution to this, apart from taking personal responsibility and asking your GP to do the same.

The final person that I think has a crucial part to play in any chronic illness Dream Team is a psychologist. If you can find one with an interest in chronic illness (or pain, breathing disorders, etc.) that's even better. Living with a chronic illness can be hard. Maintaining healthy relationships with friends and family can seem next-to-impossible if you're unable to cook, eat, walk, or even sit up. Chronic pain, nausea, breathlessness and other symptoms can make one tend to feel antisocial. Psychologists can provide a healthy outlet for feelings of grief and frustration, and can often teach techniques to manage symptoms as well as ways to explain symptoms and prognosis to family and friends.

Psychologists often get a bad rep in this country. I have frequently encountered nurses and doctors who drop their voices when mentioning psychology or psychiatry. I do understand that there's stigma associated with psychiatric illness, but this isn't going to go away if we just pretend it doesn't happen, and even those of us who would consider ourselves to be mentally 'healthy' can benefit from psychological support. If you're offered the opportunity to talk to a psychologist, I would recommend that you jump at the chance, and if you're not offered, don't be afraid to ask.

Remember, you need to be the driving force behind your Dream Team!

Negotiating with Doctors

Once again, a brief apology for being out of touch. I know that many of you have been worrying about me. I haven't been as well as usual, but am managing things at home with the help of my wonderful doctor.

I saw my doctor, Dr B, this morning. I had a double appointment and took with me the list that I made after our last meeting (which I described in my last post). Dr B read through it all carefully, even checking that I was happy with all my current medications. After listing all my symptoms (yes, all of them), I wrote a Top 10 list of the things that affect my quality of life the most, and suggested ways in which these things might be treated.

Many patients, however knowledgeable they are about their own condition, are reluctant to make suggestions, ask to try specific treatments, or even to ask for a referral to a specialist. Many of us even shy away from telling doctors how bad things really are for fear of being labeled as drug-seeking or malingering.

A good doctor will listen to your suggestions and explain what they think. They may not agree with you, but you deserve an explanation rather than a flat-out refusal. If you have a reason for your suggestion (e.g. it's part of the guidelines for treatment of your condition, or peer-reviewed research from a reputable journal), explain that to your doctor. Your doctor deserves an explanation as much as you do, and they're more likely to agree with you if they understand your reasons for suggesting a particular treatment.

The number of conditions that most doctors encounter in a single week is daunting. The number of guidelines for each of those conditions is daunting. This is just for the common conditions. Expecting your doctor to know the guidelines for your rare conditions as well as you do is not fair. They may find time to read the guidelines for your condition once they've met you, but if you want to be proactive and read them, then do, though remember that your doctor may have good reasons for treating you differently, especially if they're a specialist. Ask them to explain their reasons.

Most doctors work extremely hard, and are extremely knowledgeable. This doesn't mean that you're not allowed to disagree with them, and certainly doesn't mean that you can't see a different doctor if you feel that they're not a good 'fit' for you. I saw a GP at my local clinic when I was having a severe asthma flare. I'd increased my steroids to maximum and despite using my nebuliser every 2 hours, was still short of breath at rest. This particular GP recommended that I go home and start to reduce my steroid dose. This advice was not just ill-informed (about a condition that affects approximately 1 in 10 people in the UK), but actually dangerous, and the doctor refused to listen to any of my suggestions. Needless to say, I try to avoid that doctor now.

But back to my lovely doctor. Dr B was concerned about my chest and my stomach. I do have a chest infection, but I explained to Dr B that I've increased my steroids and nebulisers to maximum, and that I have antibiotics on hand, which I will take if I get a fever or other concerning symptoms. I've struggled a bit with keeping my oxygen levels up, but apart from that I feel that my symptoms are as well-controlled as they can be, and that I just need to support my body while it recovers from this infection. Dr B checked my oxygen levels and peak flow, and listened to my chest, and agreed that I'm giving my body enough support for now.

My stomach was a different matter. I've not been able to keep food or water down since Sunday night. This is not a new thing for me, but it is worse than usual. Dr B was keen that I should go straight to the hospital for IV fluids. I don't feel that I'm at that point yet, and explained what I planned to do in order to avoid the hospital:

1. Set a timer every 15 minutes and try to drink 5 - 10 ml each time it rings
2. Vary the liquids I'm drinking (I can't tolerate Dioralyte rehydration solution, but I can get electrolytes from other liquids)
3. Monitor my output
4. Take regular anti-emetics

Dr B agreed that this was a reasonable plan, but wanted me to promise that I would go to the hospital if things 'got worse'. I find this a bit vague, as it could mean anything from managing to drink 10 ml less than yesterday all the way through to passing out from severe dehydration. So we agreed specific parameters:

1. If my systolic blood pressure drops below 100 mmHg, or if I faint (this is slightly difficult, as I have autonomic dysfunction, so I do faint sometimes anyway, but I still think it's reasonable)
2. If my resting heart rate increases above my normal by 10 bpm
3. If my urine output drops below 300 ml per day
4. If I'm still not keeping liquids down by Friday

I left the appointment feeling very positive and confident that I could manage my own condition, and that I knew how to recognise problems and what to do if things deteriorate.

So, tips for successful appointments:

• Go into the appointment with a plan - what do you want to address at this appointment?
• Be honest about your symptoms. Write them down if necessary.
• Don't be afraid to ask questions.
• Make suggestions if you have them.
• Listen to your doctor's advice.
• Ask for clarification if necessary.
• Make sure you come away with a plan, written down if it helps you to remember.

Being Proactive

One of the things that I find most difficult about living with complex chronic illness is trying to stay on top of everything. For most healthy women, remembering to book a cervical smear test every three years after receiving the reminder letter is about as proactive as they need to be. For those of us with chronic illnesses, things can get a little more involved.

For a long time I have been trying to get one of my doctors to agree to be 'in charge' of my care. This would mean that they receive copies of all test results, hospital discharge letters and reports from other specialists. They would be responsible for coordinating referrals, prescriptions and routine testing, and would be able to help me to be proactive about my medical treatment.

Unfortunately, many doctors are reluctant to take on this complicated and time-consuming responsibility, either because they don't feel sufficiently specialised, or because they are too specialised and don't feel that it would be appropriate for them to handle those problems outside their area of expertise.

Finally, however, I have found a GP who is willing to take on this role. I met with her for the first time today, and have another appointment in a fortnight to discuss everything. Dr B has asked me to write a list of everything that I want to discuss. I already have a folder with copies of test results, diagnoses, letters from specialists, lists of medications, etc. so that's where I'm going to start. The red folder is approximately four inches thick, and it seems a little unkind to expect Dr B to read everything, so I need to make an executive summary!

Medications:
Name of medication, dose, route (e.g. tablet, inhaler, creams, eye drops), how often I take it, when it was first prescribed, why it was prescribed, side effects, and how well it works to control the symptoms for which it was prescribed.
Include regular prescribed medications, medications that I take infrequently or in an emergency (e.g. Adrenaline injection, emergency stash of antibiotics), supplements, over-the-counter medications.

Past medical history:
This is the bit that I tend to skim a bit. I've had 30 years of surgeries, hospital admissions, diagnoses, medications, splints and braces, etc. I'll probably skim it again and try to incorporate the most important bits into the systems review (coming up next!).

Systems review:
So as not to miss out anything (I often forget to mention that I'm deaf, for example), my list of problems will be ordered according to body system. This probably seems excessive to you, but to me it seems like a logical way of drawing together my past medical history, my current symptoms and the treatment that I currently receive. I'm going to use a checklist from http://medinfo.ufl.edu:8050/other/itt/ros/ros_list.pdf with a few additions of my own.


A few things:
Be detailed. Give examples to illustrate symptoms. For example, indigestion means different things to different people. Try to describe the symptoms, for example the location, severity and type of pain (ache, burning, stabbing, etc.), when it started, how long it has been there, whether it is constant or intermittent, whether it stays in one place or radiates to other parts of the body, anything that makes it feel worse or better (medications, heat, rest, certain movements), whether it is better or worse at particular times of day or night, whether it is associated with any other symptoms (e.g. sweating, vomiting, shaking, blurred vision).

Be thorough. The checklist is full of potentially embarrassing questions. Don't avoid answering those overly personal questions. If you want your doctor to have a full understanding of everything that you're experiencing as a result of your medical condition (or as a result of the medications used to treat that condition), you have to be prepared to talk about some unpleasant things.

Don't expect your doctor to understand how a particular symptom affects you without you telling him or her. Some people manage just fine without being able to lift more than 1 kg; for others this would be totally disabling.

Don't try to make light of your symptoms. If you're anything like me, you don't want to come across as complaining, pessimistic or negative, but this is the time to tell it as it is. This is your opportunity to find solutions, which isn't going to happen if you're busy pretending that you're coping absolutely fine and that you don't have any problems at all. Trust me on this one.

And finally, if you have suggestions, requests or ideas about how things could be treated, or what you'd like done to improve things, don't be afraid to tell your doctor. You're a member of your own medical team, and you're the one that has to live with the effects of any treatment plan, as well as living with the condition in the first place.