Being a Helpful Patient

There is certain information that your doctors will always need to know. This can be as simple as your name and address and your PCP's details to more detailed information about your past medical history and the medications that you take.

I have a big medical folder of my own records (known as The Big Red Folder). This is split into sections for letters from specialists, test results, relevant publications and articles, diet sheets, exercise sheets from physio, and all sorts of other useful things. Most of the time this folder lives at home with me. It contains the charts that I showed you last week that I use to keep track of my symptoms and the medications that I take.

I am so grateful that I started compiling my medical paperwork in this way, and have learned lessons from other people with complex medical conditions. One of these lessons is to take time every 6-12 months to write to my doctors and request copies of important test results. It can be so helpful to have an MRI report and the scan itself on CD to show a new doctor, rather than having to take my word for what it showed, or waste time for them to request the results from another specialist. I have so many doctors and other health professionals working with me that it can be really hard to keep track of all the tests and all the results. I am the only person who knows about every test and every appointment, so I feel a sense of responsibility to keep good records.

Right at the front of my Big Red Folder is a section of essential information. This is an 'executive summary' that covers all the most important points in my medical history. I have been asked so often by doctors in the ER if they can borrow/photocopy this executive summary that I now carry spare copies in the folder.

So where to start? Well, think back to the last time you were in the ER. You may remember being asked the same questions over and over by the different people that looked after you. There are certain things that your doctors will always need to know.

My executive summary looks like this:

Page 1:

1. My name, address and date of birth
2. Next of kin details (name and contact number)
3. Details of my GP (name, address, telephone)
4. My height and weight (important for some drug calculations)
5. A list of my most important diagnoses - no details, just the name of the diagnosis

Page 2:

Important contact details:

Name, address and contact details for all the specialists that care for me, including my hospital number (patient reference number) for each hospital/clinic. This list includes bleep numbers and email addresses where relevant. For example, it has the bleep number of the Specialist Registrar on-call for asthma at the Royal Brompton Hospital, which is the specialist lung hospital where I'm treated. If I'm admitted to any other hospital, it can be helpful for them to get in touch with one of my specialists as a matter of urgency.


Page 3:

1. List of current medications and allergies

The allergies are in a highlighted box at the top of the page. On the other side of the page is a list of medications that are contraindicated for people with my conditions. Because I have rare and complex conditions, I would rather tell people the basics again and again than risk them make a mistake with my health because they didn't know.

The rest of the page is taken up with a list of my regular and 'as required' medications. For each medication I have given the generic name (unless it's important for absorption or allergy reasons that I take a particular brand), the dose, the route, the frequency and the reason that I take it.

Make sure to include any medications that you buy over the counter, supplements that you take, and your method of contraception, if appropriate.


Page 4:

Past Medical History:

Just a list of dates and important events. For the sake of brevity, I don't include all hospital admissions, just the things that seem most relevant to me - childhood illnesses, major diagnoses, surgeries.

Page 5:

Family History:

Try to restrict this to immediate family (siblings, parents, grandparents) unless there is an inherited condition that can be seen more clearly by including more family members. Even if you don't have inherited diseases in your family, it's worth noting the causes of death of close family members and the incidence of things like diabetes, cancer and heart/lung disease.

Social History:

This is just a bit about you: 

- Do you smoke (how much and for how many years)?

- Do you drink (what, how much, how often)?

- Do you take any illegal drugs? If so, what and how often?

- Do you live in a house/flat/castle? Are there stairs?

- Do you have pets/children/other dependents?

- Who looks after your care needs if you have any?

- Do you work? What do you do, how many hours do you work?

- Are you right or left handed?

That's about it for my executive summary. Of course, it's not rocket science, but it's amazing how things get forgotten in the heat of the moment. Having a printed, legible list to give to anyone treating you can relieve a lot of the pressure of acute illness (for you and your loved ones) and allow you to focus on getting the treatment you need to get better.

More on The Big Red Folder tomorrow!

That Fine Line

Those of us with chronic illnesses live with symptoms day in and day out. The severity of those symptoms may vary, and some of them may go away from time to time, but we never feel 'well' in the way that we would like.

In order to manage these daily symptoms, many of us have medications and treatments available to us that would usually require hospital admission: home oxygen, intravenous medications, nebulisers, strong medications. These are not cures, just ways of maintaining the status quo and allow us to stay at home with a reasonable quality of life.

Difficulties arise, however, when things deteriorate despite all the medications that we have in our 'chronic illness toolkit'.

How far should we allow things to deteriorate before we 'give in' and accept that we need extra help and support? How long do we wait for the 'rescue' medications that we have to kick in? It may be that the deterioration is gradual, and insidious, and it can seem hard to know the point in the downward trend at which we should seek advice. Worse still, we can get so caught up in just dealing with each moment as it comes that we stop looking at the bigger picture and asking how we are going to improve things.

These are difficult questions for anyone reluctant to 'bother' their doctor (or other health professional), but even more so for people with chronic illnesses. Often, our illnesses are rare, and may be complex. While the necessary treatment may be simple, getting it may be another matter.

Flare-ups often seem to happen at night or at the weekend, especially if it is a holiday weekend. This poses yet another question of whether we try to wait until we can get in touch with our own specialists, or whether we need help sooner than that. I feel as though I am treading a fine line whenever I am in the position of needing to make this decision.

Emergency Departments are not really set up to treat those of us with complex medical conditions. They are very good at what they do, which is to treat accidents and acute illness. It is unfair to expect them to be able to handle rare medical conditions.

Of course, the ideal is to be able to contact one's own specialist for advice and treatment. They are far better placed to be able to tweak routine treatment and instigate new therapies than any healthcare professional meeting you for the first time.

But what happens when you really can't get in touch with your own doctors?

Alternative communication methods:
Telephone and email can be excellent ways to get in touch with your doctors. Email, in particular, allows you to give all the relevant details, taking time to write carefully and accurately, without the panic of an emergency conversation. It also allows you and your doctor to have a written record of the enquiry and any advice given.

Having a written protocol in place for emergencies:
If your illness is of the type that might require emergency treatment, you could ask your doctor or nurse specialist to write a protocol for you to take to the Emergency Department with you. For example, if you are known to have a certain type of seizure that responds well to particular medications, this could all be put in writing, with a copy given to your local ED and another copy for you to carry around with you. In the UK, it's possible for patients to be 'flagged' with the local ambulance service, so that any paramedics called out are prepared with relevant information. MedicAlert tags and cards (and equivalent) also provide valuable information if you're not able to give details to those treating you.

Be prepared:
If you can, try to predict things that might go wrong. It's not unrealistic to think that someone with gastroparesis might have a bad flare in which they can't eat or drink, and so need IV hydration and anti-sickness medications (and possibly also gastric decompression and artificial nutrition).

The more difficult cases arise when those unpredictable flare-ups occur. Either unrelated illnesses that worsen the underlying condition, or new symptoms.

In this case, it is important to act as sensibly as possible. Get advice, either from your own healthcare providers or from someone who knows you well, rather than from an overworked out-of-hours or emergency physician, in the first instance.

If the answer is that you need medical intervention (or at least assessment), the next question is when? Can you wait until you are able to see your own doctor? Is there anything more that you can do at home to keep things as stable as possible while you wait?

If the answer to 'when?' is 'now', then you have to ask 'where?' -
1. Out of hours GP service
2. Walk-in (or minor injuries) unit
3. Emergency Department (perhaps by ambulance, if necessary)

So, what are you waiting for:
Do you need help?
When do you need help?
Where are you going to get this help?

And with that, I am going to take another dose of my rescue medications now in the hope that I can delay needing help from my own doctor until tomorrow, when she is next in clinic.

Wish me luck!

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

Countdown to Christmas: Part 3

December is so nearly upon us!

While I'm sad about the end of National Health Blog Post Month (NHBPM) and the daily blog prompts (which I have mostly enjoyed reading, but ignored), I am excited about the start of my favourite month and the last run-up to Christmas.

I'm still working my way through the Christmas cards, and have wrapped all the presents that have arrived so far. There are a few still to order, but I definitely feel as though I've done the bulk of the shopping and wrapping.

This coming week is more about planning than doing:

1. Planning the decorations for the house (Richard will execute the plans this weekend): I'm looking out for good deals on Christmas trees and boughs of evergreen to suit my theme.
2. Planning baking that needs to be done nearer the time - do I need to bake cookies for Richard to take to work for his colleagues; do we want to take boxes of baked goodies to our neighbours? 'Bake, freeze and defrost' is a favourite technique of mine, but for things that really do need to be made near the time, I am ordering the ingredients this week. 
3. Entertaining: Usually we host a big party around New Year, but we're going low-key this year. It would still be nice to have some friends round during the festive period, so we need to send out invitations and plan (and buy) food and drink. We also have guests coming to stay the weekend before Christmas, so I intend to come up with a provisional menu this week, so that I can order the groceries online.
4. Planning my Christmas music for the iPod. Two playlists this year - on classical and one non-classical. Not only is this good for my personal listening, but we can plug the iPhone straight into the speaker dock in the kitchen when we have people round for drinks/nibbles/dinner.
5. The advent calendar needs to be filled (or bought, if you're that type)
6. Most people in the UK seem to get prescriptions issued for 1 month at a time. If you're one of those people, this week would be a good time to check what you'll need before the New Year, and order it from your GP.
7. Food allergies: if you have a very restricted diet or food allergies, this week would be a good time to check with the hosts of any Christmas parties you're attending. Some of them will just need a reminder, but others might need more work. If you're going somewhere unfamiliar to eat, look online for the menu or ask for a copy. It's always easier to ask questions in advance, rather than grilling the waiter on the day. If you're very worried, or if your diet is very specific, you can always eat before you go out and carry a snack in your handbag. If your host is nervous about your dietary requirements, it might be a good idea to volunteer to bring a 'Jo friendly' dish that everyone can enjoy. If you have school-age children, now is probably a good time to make sure that you remind their teacher/school of any policies in place. Kids are often allowed to bring in goodies at Christmas, so make sure that your child is protected from any  potential exposure. 

Let's say that's all for this week. I'm sure that those of you in the US are still recovering from Thanksgiving, and will appreciate a quiet week!

As for me, this has taken me almost all day to write. I've been asleep the majority of the time since Saturday night. I think I've probably just overdone it, but my body is certainly protesting about something! Back to sleep now!

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

Being Bedbound

The idea of being bedbound means different things to different people. In its most pure form, it means that someone is unable to get out of bed at all, and may need to lie flat for all or most of the time. More commonly, it is used to describe a situation in which someone spends the vast majority of their time in bed, though they may be able to go to the bathroom or transfer to another place to lie down.

Chronic conditions often fluctuate, meaning that while there are times when I can leave the house, and drive myself to a hospital appointment or other appointment and back, these activities tend to have repercussions, especially if I push past those warning signals that tell me I should be in bed! I'm 30 years old, and have lived with these conditions all my life. Of course I push past my warning signals sometimes!

I had a fun, productive and busy week last week. I thought that I'd paid for the excess movement when I had a 'crash day' midweek and could do nothing but sleep, but apparently not. I slept for 14 hours on Saturday night, and then spent most of Sunday horizontal on the sofa. Today has been much the same - horizontal on the sofa, packed around with pillows and duvet and hot water bottles; drugged to the eyeballs in an attempt to get control over the pain, nausea & vomiting and dizziness. I can't tell you how many attempts I've made at writing this post through the haze of medication that destroys any clarity of thought.

Ideally, on days like this, bed is the place to be.

In order to stay in bed (my snuggly prison, as my friend M calls it), I need certain supplies. When I was last properly bedbound in May of this year, I could crawl from my bed to the bathroom (though I collapsed and hurt myself a few times) but there was no way that I could make it downstairs. So I came up with the idea of having a 'snack station' for times like this.

The Snack Station is not for midnight feasts (well, maybe it is sometimes), but is a selection of snacks that I can tolerate even when my tummy is really playing up, and which allow me to remain fed and watered without getting out of bed. Several of my medications have to be either dissolved in water or taken with food, so it's important that I have food and water so that I can take the medications I need.

The essentials:
UHT skimmed milk (in small cartons - 500 ml or less)
Nesquick instant milkshake powder (this is fortified with sugar and vitamins)
Nutrigrain bars (low in fat and fibre, but relatively high in energy, and some contain pureed fruit)
Pretzels (low in fat & fibre if you get the right brand)
Snack-a-Jacks (come in lots of different flavours - low in fat & fibre)
Bottled water
Snack-size cartons of fruit juice (some have added vitamins and minerals)
For those of you in the US, Orgain is a great option as an organic liquid meal replacement. Here in the UK we have to put up with Scandishakes, Fortisip, Fortijuice, Forticreme, etc. You can ask your dietitian.

The kit:
Scissors
Dycem (sticky plastic stuff for getting a grip with weak hands)
Plastic cups
Plastic spoons
Drinking straws
Baby wipes
Paper napkins

I have been bedbound, or virtually so, for up to 6 months in the past. If that happened again, I would invest in a small kettle, microwave and refrigerator to live by my bed.

In the shorter term, I can ask Richard to bring thermos flasks of hot water and cold water upstairs before he leaves for work so that I can make myself hot drinks (bouillon and ribena are good; instant breakfast and cup-a-soups are edible in an emergency).

This list would also make a handy travel list of things that can be carried relatively easily and give a guaranteed supply of food and drink that don't provoke symptoms. Trying to find a shop in a new city or country (especially if you don't speak the local language) that will cater for a very restricted diet can be stressful. Especially if your blood sugar is tanking with every step you take!

So, it looks as though I'm confined to the Snuggly Prison for at least the next couple of days. I'm not miserable about that (it was worth it to be able to get my hair cut) but it's good to be prepared. Look out for pictures once I've set up my bedroom Snack Station!

If I'm stuck in bed for longer than a few days, you may also get some pictures of a bedroom Craft Station, but hopefully not. I have grand plans for the study...


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

Blaming Myself

Among other things, I have what is known as 'difficult asthma'. This means that my asthma is severe and persistent, despite maximal medical therapy. It is par for the course that things flare up and I run out of things that I can try at home. At this point, I either try to wait it out at home, in the hope that I can keep things stable enough and give my lungs time to get their act together, or I take myself off to my local hospital. The latter option usually wins, even if I try the waiting option for a bit first.

I take my medical care quite seriously, and am careful about taking my medications and avoiding allergens and things that trigger asthma attacks.

This is a good thing, as I'm sure it helps me to avoid unnecessary hospital admissions, and means that my doctors are happy to let me leave hospital that little bit earlier, as they know I'm capable of looking after myself.

I know that I'm a 'good patient', but there's always a nagging doubt that maybe I could be doing something differently. Something better.

Articles like this one (which was published in the American Journal of Respiratory and Critical Care Medicine) suggest that difficult asthma is often nothing more than a failure on the part of the patient to take their medications as prescribed.

While I agree that it's sensible to make sure that people are taking their medication before trying additional treatments with potentially serious side-effects, this view does make me feel inadequate, or even defensive. Most of the doctors that treat me are able to see that I am committed to my medical care, but there is the occasional one who treats me as though I know nothing about my treatments, and that I'm in hospital because I'm stupid. This view manifests itself in questions about my psychological wellbeing, whether I know about and take my medications, and questions about whether I smoke or inhale other inappropriate things. Peanuts and dust, for example. Or cocaine. Having patients admit to using hardcore illegal drugs makes this type of doctor very happy.

The sense of disappointment that I feel when it becomes clear that things are deteriorating despite my best efforts is hard to describe. I have such optimism when things go well, and feel so disheartened when they don't.

I think that today's lesson is that I have an illness that fluctuates. Part of the nature of difficult asthma is that it is hard to control, and I need to be forgiving of myself when, despite my best efforts, things deteriorate. However, the fact that it is an illness full of ups and downs does not give me an excuse not to try my hardest to control it. Yes, it's disheartening when I try hard and things go wrong, and I know that even when things go right it's as much due to luck as judgement, but every good day (even every good hour) is worth the effort, and I owe it to myself to give myself every opportunity to live life to the full.


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

I still remember

My current hearing aid

The titanium attachment point for my hearing aid

I still remember, at the age of four, fighting with my parents because I didn't want to take my hearing aid out at bedtime.

I didn't want to miss anything while I was sleeping.

This encounter sets the tone for my lifelong relationship with medical intervention - I love anything that allows me to interact more fully with the world around me.

Yes, it can be hard to be different, especially as a teenager/young adult, but I was so grateful for the hearing aid (now converted to a bone-anchored device fixed into the side of my skull) that allowed me to follow conversations, even in groups. So grateful for the wheelchair that allowed me to get out of the house and go on the holiday where I met my husband. So grateful for the breathing treatments and steroids that keep me out of hospital (most of the time), and for the painkillers that take the edge off the pain enough that I can smile and mean it.

Of course, it would be easier if I could function normally without all the medications and medical aids, but given that isn't really an option, I'll continue to be grateful for the things that allow me to participate in the life that I love so much.

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

Organising Medical Supplies: After

It's taken me the best part of a week, but I'm nearly there with the organisation of the medications, and here's how I did it:

One of the two drawers under my bed is now dedicated to medications and testing equipment (oxygen saturation monitor, peak flow meter, blood glucose testing equipment, thermometer, blood pressure monitor). The other drawer will, at some point, contain splints and braces. Crutches and canes are stored in a convenient gap between my wardrobe and the wall.

What I used for the medications:

1. Two canvas drawer liners with compartments (from Ikea)
2. Two clear plastic shallow boxes with dividers and lids (Ikea)
3. One clear plastic deep box with dividers and lid (Ikea)

The drawer is just deep enough to hold the two shallow boxes stacked on top of each other.

This is the bottom of the two boxes:

•  Batteries (for hearing aid, portable nebuliser, TENS machine)
• Tape
• Alcohol hand gel

The top shallow box is full of things that I might need in a hurry - it's so useful to be able to see into it, and know that because it's shallow, nothing important can fall to the bottom and get lost or pass its expiry date:

• Dissolvable anti-emetics (Zofran), mints, chewing gum, ginger candies,antacids
• Diclofenac (Voltarol) gel, Lorazepam, scar gel
• Epi-pen, antihistamines, hydrocortisone, glucose tablets

The deep plastic box is all about blood sugars. It contains my back-up glucose monitor, back-up finger stabber and spare lancets for both types of finger stabber. I love the multicoloured lancets, don't you? I just had to take them out of their cardboard package so that I can see them!

The drawer organisers have different medications in each. Most of my standard daily testing things fit into one compartment, which is useful. I've tried to keep similar medications near to each other, though it hasn't worked perfectly because of the size and shape of the dividers.

So there you have it - a fresh start to keeping my medications in order, which is so appropriate given that I am now trying to manage my chronic illnesses as though they are a full-time job, remember? What better way to start than to have everything in order?!

My next project is to get my medical records in order, including the charts that I've been using to keep track of my symptoms, vital signs and medication use. Oh, and I want to come up with a system to make sure that I know when my medications run out or expire so that I can order new ones at the right time. 

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

Organising Medical Supplies: Before

I have had a problem for a while about how to store all my medical stuff.

Searching online, though it did reveal some beautiful and clever ideas, was never going to give me a solution for my particular problem. Most normal people just don't have this much medication! Actually, the problem is not just medication but equipment, braces and splints, mobility aids, etc. 

There are two drawers on casters underneath my side of the bed, which are currently used for the purpose of storing medical stuff. They are about the right size (approximately 2.5 ft x 2 ft each), but as you can see from the photographs, there's not much of a system, and I often have to rummage around to find things. When I'm putting my pharmacy deliveries away, I put things where there's space, rather than with other similar items. Likewise, if things are needed in a hurry, they are taken from the closest packet. That sounds perfectly reasonable until I remember that sometimes these packets get moved while I'm stirring the drawer looking for something else. Which means that another packet gets used the next time. So I have numerous part-used packets of various medications, making it almost impossible to know how much I have in total.

Yes, you're right - this drawer also contains microwave popcorn and knitting yarn

The problems:

• Volume: Up to a month's supply at a time of 19 different regular medications, plus 'as required' medications, equipment, splints and braces and medical records (all currently stored in different places around the house)
• Access: I need to be able to get to everything easily, sometimes in an emergency. If I need a rescue medication in the middle of the night, I need it quickly, and I don't want to have to put the light on or have to move lots of other things to get to what I need.
• Labeling: The system needs to be clear to me (obviously) but also to my husband if he needs to get something for me in a hurry, and to friends/paramedics/nurses/anyone else who might be looking after me.
• Usability: There needs to be some kind of system so that the older things are used first, and so that I can keep track of how much I have, and can request more supplies from my GP *before* stocks run perilously low
• Small things: syringes, bottle adaptors, nebuliser filters, gloves, dressings, etc. These tend to 'float' around the drawer or sink to the bottom, never to be seen again.
• I need to keep a bottle of water, straws, a cup and snacks by the bed (preferably out of sight) so that I can take medication, including things that need to be taken with food, or dissolved in water. The straws are so that I can drink while lying down.
• Non-prescription medications(e.g. Tums/Rennies, vitamins) and non-medical things (e.g. ginger, strong mints, hard candies - for nausea) are not currently stored in the bedroom with the other medications. I think that it might be helpful to have everything in one place. 

I haven't totally sorted out all of those problems yet, but I'm well on the way with it. Look out for the 'after' photographs tomorrow and an explanation of how I'm beginning to bring order to chaos!


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

Days Like This

Despite my best efforts to remain positive and grateful to be alive in this incredible and beautiful world, there are days when things get in the way of that.

Today, for example, I have a fever. It's only 38.5 C (101.3 F), but it's enough to make me feel very shivery, even with a thick knitted cardigan, hiking socks, a duvet, a hot drink and a hot water bottle. Yes, I look ridiculous, but I was feeling miserable, and needed to be warm!

My blood sugars are running low enough for me to feel symptomatic, but whatever is causing the fever seems to be upsetting my tummy, and my gastroparesis/intestinal dysmotility are both flaring up like you wouldn't believe. My dysautonomia symptoms are through the roof, and my pain levels are higher than they have been for a while. Whatever this thing is, it's really hit my poor body hard! I haven't managed to eat anything today, but I am keeping sips of sugary drinks down, and I have some glucose tablets here that I can suck or dissolve in water, if necessary.

I thought that I would be ok to work through my to-do list while lying on the sofa, but felt so miserable that all I could do was sleep. I didn't even manage to get online to buy some really cute gift tags for the Christmas presents that I started to wrap! On the plus side, I've started a new knitting project, and a managing a few rows at a time with lots of encouragement from my online friends at Ravelry!

Typing is making me feel dizzy and more nauseous, so I'll stop soon, but I'd like to wish my US readers a very happy Thanksgiving. The lovely Rachel from talesofrachel.com is generously moderating chat on the forum of the Chronic Babes website tomorrow for those who would like some company on Thanksgiving, or who just want a break from people who don't 'get it' and some positive words from people who do!

On days like these it's my friends and family who get me through, and who give me the strength to come through the darkest and most difficult moments, ready to face the next day with a smile.

Thank you.


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

Countdown to Christmas: Part 2

Welcome to the second installment in Jo's Christmas preparations!

Right now, I imagine that Christmas is not the first thing on the minds of my dear friends in the States. For your sakes, this is a low-key week of preparations. I know that you have Thanksgiving coming up, and hope that you can all enjoy the reminder to feel thankful without feeling unhappy or stressed by the occasion.

I have to confess that I'm not feeling particularly festive, and really don't feel like making preparations. I have lots of appointments this week, but I am going to push myself to get at least a few things done, otherwise I know that I'll struggle nearer the time. Murphy's law dictates that I will end up in hospital during the whole of my last minute preparation time if I leave things too late. Actually, I'll probably be in hospital anyway (gotta love hospital wi-fi and online shopping!) but at least it's one thing off my mind if I'm up to date with my Christmas preparations.

I spent three weeks out of the four leading up to my wedding in hospital, which would have been somewhat stressful if we hadn't got most of the organising done months in advance, so I'm a big advocate for forward-planning. Those of us with chronic illness have to make the most of our good days so that we can focus on nothing but taking care of ourselves when we have bad days.

So what am I doing this week?

1. Ordering gifts online: There are some good deals around at the moment (I got 25% off most of the presents I ordered on Friday), especially with Black Friday coming up. Amazon are promoting their Black Friday deals, some of which look very good. I'm trying to consolidate all my orders so that I get all my Amazon gifts (and gifts from other websites) ordered at the same time, rather than having to go back and forth to the same sites with repeat orders. This is where the list that I made last week is particularly handy!

2. Making sauces, jams and chutneys: Cranberry sauce will freeze nicely until we're ready to use it. Jams are designed to be stored, and chutneys are considerably better if they have a few weeks to mature and develop their flavours. This year I plan to make a spiced apple chutney (it's an old favourite that I make every year, and never seem to be able to make enough to satisfy everyone!), sparkly plum jam (with edible glitter), cranberry sauce, and some sort of cranberry and apple jelly. The apples for the chutney are already cooked and stored in the freezer, so the chutney preparation will be low-effort - just adding the flavours.

3. Still plodding away at the Christmas cards: Helen (over at the Creaky Girl blog) suggested mail-merging addresses to print out onto sticky labels for the cards. I am definitely going to do this! The strength in my hands isn't great, and I get a lot of pain and illegible handwriting after a short time, so it seems sensible to conserve my hand function for the message, rather than wasting it writing names and addresses onto envelopes. As Helen rightly pointed out, it's quite a lot of effort initially, but I will be able to use the list again and again. Wish I'd done that for our wedding invitations and thank you cards!

4. Wrapping presents: We have a theme every year. This year it's brown paper with brightly-coloured ribbon and the names of the recipients stamped onto the paper. I haven't decided whether I'm going to emboss the names or not. I'll see how much my wrists hurt after wrapping. Thank goodness for sellotape dispensers! I have different boxes for the wrapped presents, depending on where they're going - thankfully this year we only have two stops on our Christmas tour, but in previous years we've had four or five stops, with a corresponding number of boxes. Once the boxes are filled, they're ready to sit until we leave for our Christmas tour, when they can be lifted straight into the boot of the car. Easy!

Wrapping paper theme for Christmas 2011 - brown paper and ribbon

5. Choosing (and ordering online) the wine for Christmas Day: We are spending Christmas with Richard's family up in the North West this year. We've been told that we don't need to help with the meal, as we'll be doing a lot of traveling, but Richard will make his traditional chocolate roulade and I'll bring chutneys and jams, which is a good tactical move, as I want to contribute something, but probably won't be much more use than a bump on a log after all the traveling! We've also offered to choose and bring the wine for Christmas Day. It's fun to choose wine to go with each course, with sherry to start and port to finish. We put money aside each month during the year as a 'wine fund', so this isn't an extra Christmas expense, thankfully.

6. Starting to buy and wrap the presents for Richard's stocking: We make stockings for each other every year, and they follow very specific rules:

• Chocolate coins and an orange (Richard has a chocolate orange because he doesn't like real ones!)
• Something to eat
• Something to read
• Something pretty
• Something useful
• Something to wear
• Something to listen to
• Something to play with

And that's all for this week. I'm desperate to start making the Christmas playlist for my iPhone, but I'm holding off for as long as possible. I make the same mistake every year, starting the Christmas music too early and then finding myself utterly jaded and sick of it by mid-December. But not this year - this year will be the year that I break that trend!

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

Having a Chronic Illness is a Full Time Job

This has been mentioned a few times on Twitter and Facebook - having a chronic illness is hard work and time-consuming.

Despite the fact that many chronic illnesses cause extreme fatigue, requiring lots of rest/sleep, and the fact that most people don't feel like doing anything at all if they're horribly nauseous, in severe pain or dizzy and faint, there are still lots of things to be done!

My medical appointments can be split into essential and non-essential. The essential ones relate to immediate management - appointments with the Chronic Pain team, the asthma clinic, nutritionist, etc. Physio, OT, psychology and some of the others fall in between essential and non-essential. Non-essential are things like appointments with the geneticist and ob/gyn. I've just got married, so these appointments will be relevant at some point, but not immediately now! My energy levels have to stretch to getting to all the essential appointments, but there are so many of them that it can be hard to get to all of them, and even harder to keep track!

In addition to the medical input from my doctors and therapists, I have to take responsibility for my own care. That involves taking my medications as prescribed, looking after my equipment, doing my physio exercises, keeping a record of symptoms and important observations (e.g. blood glucose).

Of course, there are other things that I can do to improve my physical and psychological well-being. I can practice yoga and meditation, have regular massages and seek help from complementary therapists; I can listen to my guided imagery tracks when I'm in pain, take supplements and ensure that I get the best nutrition that I can, given my dietary restrictions.

But how to keep track?

Crystal from Living with Gastroparesis posted a brilliant picture on Facebook last week, showing the chart that she uses to keep track of her daily medical and holistic routines. I've copied her idea, producing three charts, for regular medications, 'as required' medications, and lifestyle inputs, including physical observations. I plan to keep these in my medical folder (more on the medical folder in another post - I don't want to bore you too much all at once!).

Cat likes to be in photographs

Living well with a chronic illness is like having a full-time job. By approaching like a job, I hope that I can take more responsibility for my own care. I don't mean that my whole life should revolve around my illness (that's just boring!) but by taking it seriously, making self-care a priority and thinking proactively about my care so that I can ask good questions of my doctors, I am making the most of the life that I've been given. This is the way to be as healthy as I can be!

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

Stir Up Sunday

Today is traditonally known as 'Stir Up Sunday' - the day on which we make our Christmas pudding. Everyone in the family stirs the pudding and makes a wish. It's a nice tradition and makes the house smell amazing!

As soon as the cat stops sitting on my recipe book (she likes to sit on whatever object she thinks is most likely to get the attention that she thinks should be given to her) I'm going to go and dig out dried fruit, oranges, brandy and spices, along with a few less interesting ingredients, and start to think about my wish. Since I don't believe in supernaturally-granted wishes, my wishes are usually more like resolutions; things that I want to achieve for myself and my family.

This year, my wishes are about taking care of myself. Crystal from Living with Gastroparesis has recently been discussing the idea of living with a chronic illness being a full-time job. I've been quite struck by this thought and have been trying to approach my medical care in the same way that I would approach a job; planning and preparing and making sure that things get done on time and as well as possible. I used to approach it in a slightly haphazard (and resentful) way, wishing that I could just be 'normal' some of the time. I know that's an unhelpful way to think about my medical care, and that I deserve the very best care I can give myself. I'll write more next week about the changes I'm making - lots of lists and systems!

Back to the present, and the baking plans: I have a very cute apron that I usually forget to wear (thankfully I'm not a messy baker, except when I use icing/confectioner's sugar), but I'm going to wear it today. Baking in my beautiful rainbow-coloured kitchen makes me so happy!

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

Big Changes Around Our House

Richard and I went to Ikea today. As you probably know, I don't get out of the house much, so this was a big excursion. It was a beautifully sunny day, so I got out the sunglasses (as well as scarf and gloves) and we put the roof down on the car. I was so happy to enjoy the late autumn sunshine with Richard!

Our main aim was to find a cabinet or shelving system to hold the wine glasses that seem to be taking over the house. We have glasses of every conceivable shape and size - for different cocktails, spirits (cognac/armagnac, whisky) and wines - Sherry, Champagne, Chianti, Burgundy, Bordeaux, Sauvignon blanc, dessert wine and port! We were hoping to use the wall space above the sideboard in our dining room, but found something so perfect that we just had to move things to make space for it! The cello now has its own little nook under the stairs and the glass cabinet now lives between the fireplace and the piano (keyboard, really, but I call it a piano - wishful thinking!), where it looks very smart, don't you think?

Don't worry - we don't use the radiator

We also got lots of photograph frames for the photo wall in the study and for the hallway. You'll get to see them once they're filled with pictures and hung on the wall, but not before. I don't want to spoil the surprise for you!

Yes, I said 'study'. We are finally going to turn the laundry/junk room back into a study. Richard is going to get a desk and a filing cabinet, and we are going to reclaim the room. Richard plans to use it as a home office; I plan to use it for crafts. We'll see if those two uses can coexist happily together! 

Most excitingly for me, we got some storage containers to try to organise my medications, which were in quite a state. I haven't had the energy yet to put them to use, but when I do I think it might be worth a post of its own. So many medications, pieces of equipment (nebulisers, a capella, TENS machines), testing stuff (blood pressure, oxygen saturations, temperature, blood sugar, peak flow) and crutches, canes, braces, etc. It's hard to know where to store it all, especially as I need to be able to get to most of it easily.

I've looked online for storage ideas, but I realise that most normal people don't have quite the volume of medication that I have. A small slimline cabinet on the bathroom wall is just not going to cut it!

We've got some clever ideas that I'll show you once I've finished. Or at least once I've started.

Reorganising takes a surprising amount of effort on my part. I can't lift anything much heavier than 1L of milk (that's about 33 oz, for the Americans), so I do most of the planning in my head and then ask for help with the execution. My head is full of wonderful ideas, but it might take a little while to get there. Especially as Richard works long hours and I have a remarkable ability to end up in hospital when we do have time to execute my exciting plans. But I still believe that my plans will become reality one day.

Watch this space!

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

White Chocolate and Cranberry Cookies

These started life as Nigella Lawson's chocolate chip cookies. Which look very nice, except that I didn't have any milk chocolate chips (or even milk chocolate) in the house. What I did have was white chocolate chips. And dried cranberries.

I'm not sure the results really bear much resemblance to Nigella's cookies, but they've got rave reviews with everyone who has tried them. I haven't been feeling well enough to eat, though I did try a bite of Richard's. I think they could be improved by leaving out the mixed spice and adding some orange zest, and maybe swapping the Cointreau for Grand Marnier. I'll let you know how the new ones turn out - I plan to give people a few days to recover before making the next batch!

I am often asked why I bother to cook, and especially why I bother to cook things that I can't eat. I have gastroparesis, which means that my stomach empties too slowly, leaving me feeling nauseous (with or without vomiting), bloated and in pain after eating even just a small amount. There is no cure, but symptoms can be improved by eating smaller meals more often (large volumes empty from the stomach more slowly), increasing liquid calories (liquid empties more easily than solid food) and cutting down on fat and dietary fibre, both of which slow stomach emptying. These cookies are very definitely not on the list of gastroparesis-friendly things to eat.

Having said that, I can have a bite of cookie and enjoy it. I could even have a whole cookie if I thought it was worth the consequences! I enjoy the process of baking and find that it relaxes me. My husband and friends (and Richard's colleagues at work, who are often the recipients of large baking sprees) enjoy the results of my baking, and I don't usually feel bad about not being able to eat. I have a cup of tea and enjoy the company.

An unexpected bonus of spending pleasurable time in the kitchen is that I don't resent taking a bit of time out of my baking schedule to prepare tiny gastroparesis-friendly meals (or large meals that can be split into small portions and frozen). My freezer is full of healthy, flavoursome, gastroparesis-friendly meals and snacks - it is wonderful to be able to grab something out of the freezer on a bad day, or when I'm a bit pushed for time.

If I'm not already in the kitchen, I am more likely to snack on less nutritious foods, so I try to plan my meals carefully each week - it's very easy to pop a tray of butternut squash or sweet potato into the oven while it's hot, or boil some potatoes while I'm waiting for something in the oven. Good use of time, good use of electricity to put the oven on for more than one thing at a time, and good for my nutrition to be able to eat pureed butternut squash with rice,or a tiny bread roll with tahini instead of yet another bowl of cereal!

So here is the recipe:

Ingredients (makes about 16 large cookies):

125 g (1/2 cup) butter, softened
150 g (3/4 cup) soft light brown sugar
100 g (1/2 cup) golden caster sugar
1 egg
1 egg yolk
300 g (3 cups) plain (all purpose) flour
1/2 tsp bicarbonate of soda (baking soda)
1 tsp ground mixed spice
200 g (1 cup) white chocolate chips
50 g  (1/3 cup) dried cranberries
45 ml (3 tbsp) Cointreau or Grand Marnier (or orange juice, for a non-alcoholic version)

Method:

Preheat the oven to 170 C (375 F) and line a tray with baking paper.

Soak the cranberries in the Cointreau, Grand Marnier or OJ for about 15 minutes, or until most of the liquid has been absorbed.

Cream together the softened butter and sugars until light and fluffy. Beat in the egg and egg yolk, followed by the flour, bicarbonate of soda and mixed spice. Finally, stir in the chocolate chips and cranberries.

Using a 1/4 cup measure (or 60 ml ice cream scoop), measure out a tray-full of cookies, leaving plenty of space between each one. I got two trays of 8 cookies each out of this quantity.

Bake for 13-17 minutes, until the tops are starting to crack and the edges are starting to brown. Leave the cookies alone on the tray for 5-10 minutes to recover from the ordeal of having been in the oven, then transfer them to a wire rack to finish cooling.


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

Researching a New Diagnosis

I like to consider myself an expert patient. I am familiar with the signs and symptoms of my illness, the medications used to treat it (including those that I don't take) and their interactions and side effects. I know about the non-medical and complementary therapies used to treat my illness, and manage my own treatment plan with support from my GP and specialists.

This is the result of many, many years of accumulated research.

But where should you start with a new diagnosis?

I found myself asking that very question a few years ago, when I received a new diagnosis to go alongside the existing ones.

Receiving the diagnosis was a relief, as I knew that something was very wrong, so it was helpful to have a name for it so that I could start to understand. What I found frightening was that I couldn't answer people's questions about this rare condition, couldn't suggest anything to my GP, and felt totally unfamiliar with the new medications used to treat it.

So where did I start?

Get a general overview of the condition:

www.patient.co.uk contains numerous articles about medical conditions, many of them written by doctors and for doctors. This was my starting point for looking up the primary diagnosis, and later, the other diagnoses that came along with the primary one. Get an understanding of how the illness presents, is diagnosed, is treated, and how things might progress in the future. Learn about how the illness affects the normal functioning of your body (and learn about the normal functioning if you don't already know).

Try to steer clear of websites that promise miracle cures, or that promote particular products. What you need at this early stage is thorough, reliable information, which will provide a foundation for your future expertise. The NHS website, eMedicine, and Wikipedia are all relatively reliable, though you may find some of their articles a little light on detail.


Find out more from a patient perspective:

Look for any societies or charities specifically supporting people with your diagnosis. Read their articles and message boards, ask questions and compare other people's experiences with your own. Think of this as adding colour and texture to the basic understanding that you gained from the first step above.

Medical websites can give facts and figures, but you have an advantage (?!) in that you know what it is like to actually have this condition and live with it. Reading about acid reflux, for example, without ever experiencing it, is like reading about the taste of a peach without ever eating one.

Look for published research:

PubMed was my next port of call, to see what research had been published about my condition. This is a quick step, just to see if there is anything new or on the horizon for your condition. You may not be able to access full text of research papers, but you can always ask your GP or specialist to print off articles for you, or just ask them what they think about a particular piece of research.

Find out more about drug treatments:

Patient information leaflets provided with any prescribed or over-the-counter medication are helpful. Make sure you read them, even if you don't remember everything they say. It's important to know if a new symptom could be a side-effect of medication or an interaction with another medication that you take. The BNF (British National Formulary) has more details about doses, adverse effects and interactions. Your pharmacist will have a copy and might let you borrow or keep an old edition if they have one knocking around. Try to understand what each medication does and why it has been prescribed.

Complementary and lifestyle measures:

This is probably the most difficult topic to research, as results are often anecdotal. Ask questions of other people with your condition, your GP, your therapists and specialists. Talk to complementary therapists (make sure they're registered with a recognised governing body, and get a personal recommendation if possible). Remember that your mind is very important in all of this - relaxation and meditation may be a valuable part of your treatment, along with more physical interventions, such as acupuncture, yoga, diet and exercise, osteopathy, etc. Most of all, use your common sense. Don't stop taking prescribed medications without consulting your GP, or try something that your gut tells you is risky.

Finally:

Try to keep track of your symptoms - what makes them better or worse, what effects (good and bad) you notice from the medication you are prescribed and from any lifestyle changes you make. Take every opportunity you can to learn more about your condition, participating in teaching for medical students or expert patient programmes, if they're offered to you.

This is your life; your medical condition, and you can take charge. You are the only one who can see the whole big picture of your body and how it's affected by various things (illness, food, exercise, medication, etc.), so you have the right to be the boss of your medical team. Use other people's expertise in addition to your own, but don't forget that you are the leader and the core of the team. This is your life, and you have a vested interest in living it to the very best of your ability.


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

Grace Under Pressure

This is the title of a song by Elbow:

This song means a lot to me because it expresses the way that I want to live my life. I would like to feel that I could behave with grace while living with difficult circumstances.

Despite the temptation, I don't think that there is ever an excuse to be rude to people, short-tempered or unkind. That doesn't mean that I'm always perfect - far from it, but I don't think that my illness gives me the right to treat other people badly.

I try to remember that I can't know the circumstances affecting those around me, and that I'm almost certainly not the only one who is having a hard day.


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

Countdown to Christmas: Part 1

With less than six weeks to go until Christmas now is the time to start preparations.

I'm not suggesting that you play Christmas music on repeat from now until the end of December, or that it's the right time to start wearing those glitterball earrings, or even that you have to pretend to feel festive, but a few moments of planning this week will save much pain in the long run!

For those of us with chronic illnesses, holidays can be difficult. There may be long days of socialising, late nights, lots of travelling and unsuitable food. It may be difficult to find time to rest, take medications on schedule, exercise or meditate. In addition to this, there are the usual stressors of buying and wrapping gifts, sticking to a budget (which may be especially tight for those unable to work due to illness) and preparing to be the Hostess with the Mostest.

Things I am doing this week:

1. Making lots of lists: I have a list of presents that I need to buy for people (this will help me to stick to my budget, as I can look out for things on sale or special offer without panicking that I'm running out of time); a Christmas card list; lists of things that my husband and I would like so that I can tell people who ask for gift idea (we both have allergies, so it's often safer to give people specific suggestions). I also have a list of events so that I can start to think about travel arrangements and make sure that I don't kill myself by agreeing to go to ten parties in one week.

2. Arranging appointments: Now is a good time to deal with any little nagging health problems before the holidays hit. The last thing I want is to allow a small problem to develop into a big problem that could spoil my enjoyment of the holiday. It's also a good time to book a dental check-up and hair styling appointments before the party season starts in earnest.

3. Trying out holiday recipes: There are lots of things that I can't eat, but rather than be a miseryguts about it, I plan to try out some seasonal recipes that will suit my dietary requirements and appeal to everyone else. Crystal at Living (Well!) with Gastroparesis has some great recipes, hints and tips about handling the holidays without causing major symptom flares, and I plan to try some of her recipes this year. I definitely want to give them a trial run before the holidays so that I can avoid the stress of cooking something for the first time, not knowing if I'm going to enjoy it or if my body will tolerate it.

4. I've already bought wrapping paper and cards (I saved a lot of money because I bought them early), so I can start to write Christmas cards and wrap presents as I buy them. I can't write for very long at any one time, so if I write a few cards every day, I won't cause myself lots of pain by trying to write them all at the beginning of December (or lots of guilt that I didn't manage to send them out early enough)! 

I think that's quite enough holiday preparation for this week. There's no point in exhausting myself now while trying to avoid exhausting myself later. Check back next week for more planning and preparation!


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

Help Me, Please

I can't do this on my own.

This is not an admission that I can't cope with life in general, just that some things are hard. Most of the time I have much less energy than would be required to complete my 'to do' list, along with numerous other symptoms that interfere with my daily plans.

Every day is a balancing act - trying to juggle the things that need to be done with my physical symptoms.

The smart ones among us get skilled at delegating and asking for help.

I struggle with my pride over this issue, and often leave it too late, ending up in tears on the kitchen floor, completely exhausted, overwhelmed and unable to do anything useful. It's not that I don't want people to help me, but just that I find it difficult to ask.

Friends often ask the generic question, "Is there anything I can do?" or tell me to let them know if I need anything. This is difficult because it then puts me in the position of having to ask. I may really need help with the laundry, or to wash and style my hair, but might be too embarrassed to suggest it.

If you really do want to help someone with a chronic illness, it might be helpful to follow your general question with some specific suggestions. This shows that you're not just offering platitudes or saying what you feel you should say in that situation.

Some ideas:

1. Help getting to/from hospital appointments
2. Meals - things that can go in the freezer, gift cards for restaurants that deliver
3. Shopping - especially if you're going to the supermarket or other shops, ask if you can pick anything up while you're there, or if your friend would like to come with you
4. Laundry - changing bed sheets, washing, ironing, folding
5. Small DIY tasks - light bulbs, checking the smoke alarm, bleeding radiators, empty bins
6. Company - offer to bring food/drink, DVD, games, books or flowers
7. Personal care - washing and styling hair, make-up, painting finger/toe nails
8. Food preparation - peel/chop vegetables, decant things out of heavy containers
9. Child/animal care - this can be a major stressor when someone is very unwell or in hospital. Offer to walk the dog or host the children for the weekend, or to arrange a rota to pick the children up from school

I am so grateful for my support networks, both emotional and practical, but despite my gratitude, there are still times when I turn down offers of help. Don't be hurt or offended - I might be having a great week, ploughing through my to-do list, or I might be hibernating in bed, avoiding all human contact. Don't take it personally and don't be afraid to ask another time.

For my part, I will try to be better at asking when I need help and at being honest if I'm struggling.

Together, we'll get there!


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