Of course it's ok to be scared.
Life is a great adventure, but it's understandable to feel apprehensive about pain, other symptoms, disease progression and even death.
The problems really arise when the fear and apprehension become so all-encompassing that they eclipse all other feelings. Every day can hold so many fearful opportunities, and life loses some of its sparkle when we lose sight of the reasons it is worth living.
I know that I will probably die younger than most of my friends. I don't want to miss out on anything, but by focusing on my grief at having a shortened life expectancy, rather than on the opportunities in each day, that's exactly what I'm doing.
One of the ways that allows me to enjoy each day is to control my symptoms. By taking control of monitoring my conditions (even when this involves tedious blood testing or time-consuming calculations of fluid balance) and taking the right doses of the right medications at the right time, I am giving my body the best possible chance to perform when I want to do fun stuff.
Part of this relates to acceptance - acceptance is not just recognising the name and impact of your condition. On the other hand, it is also not about making illness (or recovery) the whole focus of your life. There has to be a balance between living with the condition and living despite the condition.
Fear is one of those things that can seriously get in the way of living a productive life despite illness.
For me, the first step is to recognise the things that make me anxious - there are almost always ways to get around these things, whether it's ringing ahead to a restaurant to discuss appropriate food choices to avoid anxiety on facing the menu, working with therapists to increase strength and range of movement, or discussing better pain management strategies with your Dream Team.
I'm scared of having long-term lines (IV and a feeding tube) - the responsibility of possible infection, the cosmetic implications (not that I've ever been a bikini girl!), the pain associated with insertion, and all the kit that I'll have to learn to use at home. I'm also scared that I can't deny the effects that this illness is having on my body - no more pretending that I'm perfectly healthy!
Thankfully, I don't have much of a choice in the matter of the tubes, so I'm just going to have to bite the bullet, put on my Big Girl Panties and deal with it. Focusing on the positives is going to be my strategy of choice - I'll be able to spend less time in hospital for a start! Obviously (because I love lists) I also have a list of fun things that I'd like to do once I have some calories inside me, and therefore some energy!
Am I still scared?
Yes, of course I am. Having a list of fun things to do and lots of lovely people to share these activities doesn't take away the reality of daily symptoms and possible future declines. What it does do, however, is remind me that however dark it may seem under my own personal grey cloud, if I make enough of an effort, there's always a silver lining to be found.
Showing posts with label symptoms. Show all posts
Showing posts with label symptoms. Show all posts
Tuesday, 22 May 2012
Monday, 16 January 2012
Being Proactive
One of the things that I find most difficult about living with complex chronic illness is trying to stay on top of everything. For most healthy women, remembering to book a cervical smear test every three years after receiving the reminder letter is about as proactive as they need to be. For those of us with chronic illnesses, things can get a little more involved.
For a long time I have been trying to get one of my doctors to agree to be 'in charge' of my care. This would mean that they receive copies of all test results, hospital discharge letters and reports from other specialists. They would be responsible for coordinating referrals, prescriptions and routine testing, and would be able to help me to be proactive about my medical treatment.
Unfortunately, many doctors are reluctant to take on this complicated and time-consuming responsibility, either because they don't feel sufficiently specialised, or because they are too specialised and don't feel that it would be appropriate for them to handle those problems outside their area of expertise.
Finally, however, I have found a GP who is willing to take on this role. I met with her for the first time today, and have another appointment in a fortnight to discuss everything. Dr B has asked me to write a list of everything that I want to discuss. I already have a folder with copies of test results, diagnoses, letters from specialists, lists of medications, etc. so that's where I'm going to start. The red folder is approximately four inches thick, and it seems a little unkind to expect Dr B to read everything, so I need to make an executive summary!
Medications:
Name of medication, dose, route (e.g. tablet, inhaler, creams, eye drops), how often I take it, when it was first prescribed, why it was prescribed, side effects, and how well it works to control the symptoms for which it was prescribed.
Include regular prescribed medications, medications that I take infrequently or in an emergency (e.g. Adrenaline injection, emergency stash of antibiotics), supplements, over-the-counter medications.
Past medical history:
This is the bit that I tend to skim a bit. I've had 30 years of surgeries, hospital admissions, diagnoses, medications, splints and braces, etc. I'll probably skim it again and try to incorporate the most important bits into the systems review (coming up next!).
Systems review:
So as not to miss out anything (I often forget to mention that I'm deaf, for example), my list of problems will be ordered according to body system. This probably seems excessive to you, but to me it seems like a logical way of drawing together my past medical history, my current symptoms and the treatment that I currently receive. I'm going to use a checklist from http://medinfo.ufl.edu:8050/other/itt/ros/ros_list.pdf with a few additions of my own.
A few things:
Be detailed. Give examples to illustrate symptoms. For example, indigestion means different things to different people. Try to describe the symptoms, for example the location, severity and type of pain (ache, burning, stabbing, etc.), when it started, how long it has been there, whether it is constant or intermittent, whether it stays in one place or radiates to other parts of the body, anything that makes it feel worse or better (medications, heat, rest, certain movements), whether it is better or worse at particular times of day or night, whether it is associated with any other symptoms (e.g. sweating, vomiting, shaking, blurred vision).
Be thorough. The checklist is full of potentially embarrassing questions. Don't avoid answering those overly personal questions. If you want your doctor to have a full understanding of everything that you're experiencing as a result of your medical condition (or as a result of the medications used to treat that condition), you have to be prepared to talk about some unpleasant things.
Don't expect your doctor to understand how a particular symptom affects you without you telling him or her. Some people manage just fine without being able to lift more than 1 kg; for others this would be totally disabling.
Don't try to make light of your symptoms. If you're anything like me, you don't want to come across as complaining, pessimistic or negative, but this is the time to tell it as it is. This is your opportunity to find solutions, which isn't going to happen if you're busy pretending that you're coping absolutely fine and that you don't have any problems at all. Trust me on this one.
And finally, if you have suggestions, requests or ideas about how things could be treated, or what you'd like done to improve things, don't be afraid to tell your doctor. You're a member of your own medical team, and you're the one that has to live with the effects of any treatment plan, as well as living with the condition in the first place.
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.
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