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.
Monday, 16 January 2012
Saturday, 3 December 2011
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:
- My name, address and date of birth
- Next of kin details (name and contact number)
- Details of my GP (name, address, telephone)
- My height and weight (important for some drug calculations)
- A list of my most important diagnoses - no details, just the name of the diagnosis
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:
- List of current medications and allergies
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!
Wednesday, 30 November 2011
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
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
Tuesday, 29 November 2011
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:
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
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:
- 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.
- 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.
- 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.
- 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.
- The advent calendar needs to be filled (or bought, if you're that type)
- 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.
- 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.
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
Monday, 28 November 2011
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
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
Sunday, 27 November 2011
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 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
Saturday, 26 November 2011
I still remember
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| My current hearing aid |
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| 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
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