Learning how to manage your health issue successfully (or well enough) can sometimes feel like a full-time job. You have a lot to learn about your health issue, how people tend to be affected, what treatments there are, is there a cure, what non-medical treatments can possibly help, getting used to having a medical routine, managing your appointments, I can go on and on.
Yes, it is a lot to learn. And you have been forced to learn something you would not have freely chosen to. It can feel overwhelming at times. It can also feel like a hit or miss process. So feeling frustrated is normal.
Learning how to manage your health issue successfully is a trial and error process. I can’t change that fact but what I can do is share the 12 things you can do to help manage your health issue successfully.
This bog is part of the series on creating a rehabilitation plan for yourself or a loved one. In this blog, I am referring to managing the physical aspect of your health issue.
So how do you manage your health issue successfully?
1. Keep a list of the medications you take, dosages and how often you have to take them.
You can also include any routines you need to follow for example self-catheterisation, bowel care, resting at regular intervals, etc.
It’s handy to have this list when you see medical and healthcare professionals as you can refer to it or give it to them when they ask what medications you are on. This helps when you may not always see the same person. You also don’t have to remember everything as you have the list to refer to so your energy is freed up to focus on what is going on in the appointment.
Also give a family member close to you a list in the event of an emergency. I have a list of my other half’s medications in my wallet.
2. Proactively track your symptoms
I recommend tracking your symptoms over time. It can help you learn patterns in how you are affected. For example, do your symptoms fluctuate during the day, when that tends to happen and what may trigger that (activity levels, diet, is it a side effect of medication, something else, or is it just random).
This requires you to listen to your body closely. I often find this is a skill people often have to learn. It’s understandable because as a society we are much more cognitive focused, i.e. we rely a lot more, sometimes 100%, on what we think rather than what we feel in our bodies. Yet our body is a very rich source of information on how we are doing and our needs.
Knowing the subtleties of how your symptoms feel in your body means you are in a better position to explain to medical and healthcare professionals when they ask you how things are going and how you are feeling.
Being able to explain how you are affected is also an issue I see for some people. It’s not easy as you are learning how your body is affected. But tracking your symptoms gives you the information you need to explain that to your healthcare professionals. Being able to do that is a key skill you need as it enables you to help your healthcare team to help you.
3. Proactively manage your symptoms
By tracking your symptoms, you start to learn what you can do to proactively manage your symptoms. The strategies may include a change in medication dosage or the medications you take, non-medical activities, using equipment, or something else.
What you do will depend on the symptoms you experience. For example, pacing for fatigue and pain, stretching for spasticity, compression garments and massage for lymphodema, acupuncture, reflexology, etc. It may take some research and trial and error to find the non-medical approaches which suit you.
I think it’s important to not expect every intervention to work 100% and be that one thing that will solve the issue. It’s kind of like placing all your eggs in one basket and potentially setting yourself up for disappointment at a time when you need less of that.
Many times you can’t be totally sure something will work whether it be a new cocktail of medications or different dosages or a non-medical intervention like health coaching. You have to go in with an open mind, give it a good go and see how it works for you. If it doesn’t work 100%, take what does work.
For example, I remember one person saying they had Cognitive Behavioural Therapy and it didn’t really work. I asked if any of it did work. They explained what did and I asked how much out of a 100% was it. They said 25%. I said to take that 25% and use it. Focusing on what does work is proactive and one way of taking control.
So this person did CBT and then tried health coaching to address the issue. They may have tried another activity too. You may find you need several different approaches to manage one symptom. That is often the case.If a medical or non-medical intervention doesn’t work 100%, take what does work even if it’s only 25%. Focusing on what does work is proactive and one way of taking control. #seriousillness Click To Tweet
4. Identify what you need and who can help you meet that need
There may be other specialists who can help with your recovery and ongoing rehabilitation including physiotherapist, occupational therapist, dietician, specialist nurse, urologist, psychologist, acupuncturist, masseuse, reflexologist, counsellor, a health coach and more.
If you don’t know what kind of specialist would be best to help, identify the issue you are struggling with and start asking people what and who can help you improve that issue. The people you ask can be your GP (go see one who demonstrates empathy regarding your health issue), a nurse if you see one, support group and/or charity for people with the health issue you have, even friends if they are familiar with your issue.
5. Keep moving as much as you can
Our bodies are designed to move (think of all the joints we have in our body!) so a certain amount of exercise/movement is often good for us. How much and what you can do will of course depend on how your body is affected by your health issue.
You may require specialist input from your doctor, a nurse, physiotherapist, occupational therapist, rehabilitation specialist or a personal trainer. You may need to build up activity levels over time if you experience fatigue, pain and/or mobility issues for example.
Getting help from friends and family in doing your physiotherapy or taking some exercise is a way to get them involved when they ask how they can help.
6. Have a plan for medical emergencies
If there is a probability of you experiencing a medical emergency, note what that is, what needs to be done (do you need to take medications, have a procedure, something else), who needs to be notified and their contact information.
Make sure family, friends and colleagues know how to help you in such an emergency, even if your kids are young. In some cases, it can be the difference between life and death as in the case of a parent having a hypoglycemia episode due to diabetes. Also make sure they know what medications you’re on.
7. Develop a plan when you have an exacerbation of existing symptoms or relapse
If you are living with a fluctuating or relapsing condition, you experience periods when your symptoms are worse. Over time you may learn what triggers a fluctuation or relapse and what the symptoms start to feel like as you get worse (and better).
You also learn how to look after yourself to manage the impact, for example do you need more sleep during these times, minimise physical exertion, work from home, make adjustments to your diet, etc. Develop a plan for how you look after yourself during these periods.
8. Develop a plan for those times when your health is stable and in a good enough place
Likewise, when you are in a place where your condition is stable and you are in a good period, how do you look after yourself then? Sometimes we can be tempted to do a lot because we feel well, we don’t know how long that will be, and dammit we just want to live life and get as much done as we can! That’s understandable. If you do that, notice the impact it has on you and make any adjustments you feel are necessary.When your #health issue is calm and you’re in a good place physically, how do you look after yourself then? Looking after ourselves is important whatever state our body is in – in sickness or in health and all stages in between.… Click To Tweet
9. You are in charge of your healthcare team
Your healthcare team consists of the medical and healthcare professionals, family, friends, pets, and anyone else you choose. You’re in charge of this team so it’s up to you to let them know what is important to you, what you need/want and your goals, and to ask questions. They cannot mind read nor guess what is best for you.
It’s ok to make changes to members of the team (where and when that is possible). You need good people around you who support you. For example, if you have an unempathetic GP, look into changing them.
My husband said one of his biggest learnings was that he was in charge of his team and he had to be proactive to get what he needed from them. And you are in charge of all aspects from helping them to help you to administration.
Also remember that your healthcare team won’t always get it right for you 100% of the time (medically though, you hope they do). They may have to cancel your appointment due to illness or deal with an emergency. They may forget to pass your new prescription on to the pharmacy. Their bedside manner may be hit or miss because they are having a bad day.
They are human too. As I said about not relying on one intervention to solve an issue, don’t go in expecting a medical professional to get it right all of the time and meet all of your emotional needs. Be prepared to make phone calls to sort out prescriptions and appointments. Have several other people in your healthcare team who can help meet emotional needs.
10. Prepare for your appointments with medical and healthcare professionals to get the most from them
This is another aspect of managing your health issue successfully. Keep a log of questions you have in between appointments. Write them down as they occur to you and what led you to have that question. That way you have the questions ready for appointments.
Prioritise your questions as you often have limited time for appointments. In the UK, you typically have 10 minutes with your GP (you can often book double appointments if you need more time). If you are seeing a consultant, you may have 10-30 minutes depending on the type of appointment and the professional you are seeing.
If you are in between appointments, or no appointments are scheduled, you can call your GP, your doctor’s secretary, or a nurse who works with the doctor. Sometimes patients are given the contact info for their doctor’s secretary or even a nurse. Sometimes not.
If you haven’t received a healthcare professional’s contact information, look up the doctor on the internet and sometimes they list a contact email or phone number for the doctor. If none is listed, you can call the hospital where the doctor works and ask to be put through to him/her or their secretary. You may be bounced around a bit, but it is worth a try.
There may also be a charity who supports people with the condition you have and they can be an excellent resource. Some have helplines you can call and/or email with your question.
Peer groups can be an excellent resource of information and advice too. Just keep in mind the information may not always be applicable to you or accurate.
11. Remember that learning to manage your health issue successfully is a process of trial and error
Don’t beat yourself up when something doesn’t go to plan or work very well. Sure you may feel frustrated. That’s understandable. Just don’t beat yourself up. Use appropriate self-care at these times to look after yourself.
Adopting a learning mindset will help in these situations. Focused on what you learned, what worked, what did not. Sit with the frustration for a bit so it gets its airing. But don’t unpack and live in it. Then re-plan. That is taking control.Remember, learning how to manage your #health issue is a process of trial and error. It won’t go to plan all of the time. Don’t beat yourself up. Use appropriate self-care at these times to look after yourself. #chronicillness Click To Tweet
12. You have to be your own advocate to manage your health issue successfully
You have to know what you need and ask for it. If you are struggling to know what you need, you can get help to figure that out. Being shy about expressing your needs to the point you do nothing isn’t going to help.
Being your own advocate often requires a shift in your beliefs about yourself and your abilities. It’s about you learning that yes, you do matter. Very much.
You also have needs and they are valid needs.
Stating those needs to people whose job it is to help you meet them is not placing an imposition on them. If you don’t ask, you don’t get. So ask.
Sometimes you have to be more forceful in the language and tone of voice you use. As some people say, ‘I learned to be gobby and not care.’
Members of your healthcare team, particularly family and friends, can help you advocate for yourself. They can also be note takers at important appointments.
Essentially, you are the CEO of you. So you’re in charge.
What’s it like for you?
What has helped you manage your health issue successfully? Is there anything you would add to the list above? Share your thoughts or questions in the comments below or alternatively email them to me (contact form in sidebar).
If you are living with a serious health issue or are caring for someone who is, and would like support to create your own rehabilitation plan, have a look at how we can work together and get in touch for a free no obligation consultation.
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© Copyright Barbara Babcock 2019