Each chronic illness is unique in its own way. If you have MS you know what to expect, but from MS case-to-MS case, what someone experiences is vastly different from someone else. This makes identifying chronic illness roadblocks particularly difficult if you are trying to figure out how to handle them.
I tend to be asymptomatic in a lot of health-related areas in my life. When I get optic neuritis, I get the vision blurring, but I don’t have any of the pain associated with it. Other people may get the vision and pain, while still others may just get the pain but no vision disruptions.
That’s why it’s important to focus on what happens to you in your situations, not what books or healthcare professionals say you should be experiencing.* Only you know yourself best, even if you haven’t taken the time to actively reflect on your illness.
Below are some questions you want to ask yourself and some tips on where to go depending on your responses. Use this post as an exercise in starting a plan for how to identify and manage your chronic illness roadblocks.
Identifying Life Goals
If you’re a newsletter subscriber, you’ve been working on creating some goals for this year. We’ve established 5 major goals to complete for 2019: 1 long-term goal and 4 short-term ones. If you are here to make some changes while coping with a chronic illness, ask yourself the following questions:
- What is a specific goal I have in mind for myself?
- How will this impact my life? How will it impact it for the better?
- Is this a major life goal? (i.e. something that will alter my life path significantly)
- Is this a minor life goal? (i.e. a small change I’ve wanted to make)
- Is this goal related to my chronic illness and in what way?
- How might this goal impact my illness
Identifying Chronic Illness Roadblocks
Each chronic illness has its own set of complications that stick with us on a daily basis. It may be pain, numbness, fatigue, or some other invisible element that only serves to frustrate us. Take a moment to list out your daily symptoms when you are not experiencing an attack. Use the following ideas as prompts. You may need to take a few days being mindful of your schedule in order to accurately respond to the prompts:
- My average energy level each day between 1 and 10 (“1” being no energy to “10” being on 5 cups of coffee) is:
- My average pain level each day between 1 and 10 (“1” being no pain to “10” being necessary medical intervention) is:
- What are my motor abilities on a good day? What are they on a mediocre day? What are they on a bad day (but not during an attack)?
- How often do I have non-attack “low” days? (these may be days where one or more symptoms seem to be overwhelming)
- How often do I have “high” days? (these will be days when your “spoon” or “
matchbox” might be full)
- Do my days have a cycle
tothem? Do I have more energy in the morning or in the afternoon?
Additionally, examine previous attacks brought on by your illness. Answer the following questions as honestly as possible. Contact your healthcare professional if you don’t remember or need clarification to get an accurate answer:
- What attacks have I experienced in the past?
- What happens in these attacks most of the time?
- How long do they typically last?
- How do I manage them alone? How do I manage them with my healthcare provider?
- Do I know the source of these attacks? (i.e. if I am under a lot of personal stress am I more likely to experience an attack)
- If I have a particularly bad attack, how disruptive to my life is it?
Make an active decision to chronicle your next attack. Write down the answers to the following points:
- What happened just before it started
- What was the first sign of the attack
- How long did it go on for and what were the specific symptoms
- What did you need to do to resolve it
- What did you feel like after the attack (drained, relieved, etc.)
- Is there a clear event that triggered it or a collection of factors
Making an effort to chronicle your future attacks will help you begin to recognize when you may be getting close to an attack and help you prevent it from starting or start the process of treating it.
I find that my L’Hermittes sign tends to appear when I am stressed out and goes away when I manage my personal stress levels. It’s a canary in the coal mine for me: if I don’t manage my L’Hermittes Sign and allow it to get more pronounced, then I may find myself in the middle of an even worse attack such as Optic Neuritis or lose
Plan to meet those goals
Once you’ve identified your goals and the chronic illness roadblocks (for “normal” days and attack days), it’s time to set up a plan on how to approach your goals. Look at the lists and examine any overlap or similarities in responses to the lists.
For example, in your personal goals, you may want to do more housework but found that on a normal, non-attack day you typically do not have enough energy by the afternoon.Therefore, you may want to schedule any housework you want to do in the mornings rather than putting it off until the afternoon.
Go through each goal and see how it might be impacted by your daily chronic illness symptoms. Then incorporate your attacks with your plans this year:
- Do not be afraid of the schedule and to-do list. I realized in the months leading up to 2019 that I really needed to rely more on my planner and to-do lists in order to get everything done. My MS causes memory issues, so if something isn’t written down, it’s unlikely I will remember it.
- Set up multiple goals that are situation specific. If you find that your attack leaves you bedridden for an indefinite period of time, set up a secondary goal that can be done while in bed. You may want to learn a hobby that allows you to work with your hands, or you might want to do more freelance work on your computer – have that goal take precedence when you are in the middle of an attack.
- If you get tired at the beginning of the day no matter how well you space out your tasks, then front-load all your plans. Try to keep the amount to a reasonable number that you can achieve every day. Don’t plan for ten things if you can only reasonably complete four. This will prevent discouragement and give you a nice boost when you feel productive.
- If you find that fatigue gets you and you absolutely must rest in order to continue forward, then plan in a daily nap at a specific time so you can help manage the rest of your day. If you are still working, try to schedule a break during this time to give yourself a few quiet moments.
- If your attacks are ones that bring you to the hospital for a few days, pack a “go” bag ahead of time. Make sure to fill it with comfort and necessities, but also fill it with some of your smaller goals: easy to transport craft, a book you’ve wanted to read, some other project that you know you’ll be able to work on while recuperating. You won’t be scrambling looking for these items and it brings some control back into the situation.
These are just a few ideas to get you started on managing your roadblocks. The key is, if you plan to meet your goals, despite having the additional roadblocks, you’ll have more success.
Work with the illness, not against it
There is a temptation to either ignore or not factor in an illness when setting up goals. The issue with that is, while not acknowledging the illness might be for personal protection reasons, it’s setting yourself up for failure.
If I choose to ignore that fatigue is a problem for me, particularly after 1pm, then it is unlikely I am organizing my time wisely. If I want to successfully achieve my goals knowing that I need a nap around 1pm, then I will schedule only the important tasks before noon (to allow for some wiggle room). Any task completed after 1pm will be gravy and any task not completed after 1pm will be pushed off until tomorrow.
- By identifying what is the source of your attacks, you can plan how to prevent or work towards preventing those attacks. It won’t be perfect or 100%, but it might help minimize the attack impact
- Do not ignore the importance of the attacks. Many attacks can come out of the blue depending on your illness, but some are your body’s way of telling you something important. For me, it is telling me that I am pushing myself too hard and putting myself under unnecessary stress so I need to take a step back.
- Do not look at an attack as a setback, but as an opportunity to reset and regroup. It might take you out of commission for several weeks or send you in the hospital, but this isn’t something that has to be negative, but turned into a positive: I need to rest and take care of myself, so let me do so in these moments.
Remember, being caring and loving to yourself should be behind all of your personal goals. If you want to make self-improvement goals, you are doing them from a place of wanting to love yourself.
Motivation, Motivation, Motivation
Figure out what motivates you. You might find that checking things off your to-do list motivates you to move forward. You’ve answered the questions why you want to make changes, find ways to actualize these changes in your mind.
If you want to keep sharp by doing some brain exercises, think about how nice it will be to be able to remember something without needing to write it down after doing exercises for a few months. If you want to find a new job because the current one is providing stress that exacerbates your attacks, then when you walk out of your interview should be a point of motivation.
Regardless of what it is that you want to do, maintain your motivation by seeing yourself where you want to be and the doing everything to get there. I found that beating my attacks back sooner than I did in the past as a form of motivation, which may work just as well for you too.
Keep moving forward
Attacks are going to happen. You will experience roadblocks. But how you manage the roadblocks will make all the difference. Always keep a plan in mind when identifying chronic illness roadblocks and making personal changes.
What keeps you moving forward? Share your thoughts in the comments below.
*I am not saying ignore or dismiss your healthcare professionals advice. I am. Please read my disclosure policy for more information.
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