The first hope most spoonies have when they get a diagnosis is that when the doctor figures out the diagnosis, they can make a full recovery. The truth of the matter is that full recoveries are a lot of hard work and time, if they are possible at all. But it is possible to start a healing journey that can bring you closer to living the life you want to live while recognizing that your chronic illness will probably always be a part of you.
1. Healing isn’t linear
Many people think about healing as a straight line from being absolutely sick until gradually you get better. When you live with a chronic condition, you quickly learn that isn’t the case. There are many traps that can make you feel you aren’t making progress at all or that you are getting worse.
Good Days
Some of us with chronic illnesses know the trap that good days can be. It’s easy for us with chronic illnesses to forget often about managing our condition or feel like we have suddenly been cured and can do anything. But often, we can experience a flare after a good day because we didn’t take care of ourselves and all the extra things we caught up to us. Enjoy the good days as they come, but be aware of the price you will pay later if you overdo it.
Unpredictable Energy
It’s hard to make long-term plans when you can’t guarantee any level of energy at any time. As you learn more about your condition and how it affects you, you will better predict what you can and can’t handle. While it isn’t perfect, give yourself grace when things don’t work out as you hope. On some occasions, we may experience a flare-up on a day when we are looking forward to something. Be gracious and honest with those around you. Most people who should be in your life will understand.
Acute Illness
It is easy to forget things like the common cold exist when you are already dealing with a chronic illness. In these days, Covid-19 is also a contender for an illness you may have that affects your chronic illness management. I’ve learned through experience that when I’m sick, I will have at least 1 seizure. The illness weakens my defenses, making it difficult for me to prevent a seizure. As a result, I prepare myself for the inevitable occurrence.
Triggers
It takes some time to learn about what triggers flare-ups. For some conditions, doctors will tell you likely triggers like foods you eat or lack of sleep. For other conditions, you need to figure out on your own what your triggers are. Learning what your triggers are and learning to minimize or avoid their impact can make a big difference in managing your condition.
Stressors
Life comes with stress. Some periods will be more stressful than others, but stress is an unavoidable part of life. Right now, one of my big stressors is preparing to move. The act of packing and moving things is stressful but the place we are moving to will be an improvement on my quality of life, so it’s worth the stress. Similarly, we may ultimately invest in events like weddings, funerals, and job changes, but they still need to be handled as stressors. Learning how to handle your stress is an invaluable tool to help you manage your chronic condition.
Short-term struggle for long-term benefit
There are a lot of things in life with chronic illness that may fall under this category. This includes various therapies and medications. For the first few weeks of my sleep medicine, I would have dizzy spells. Once my body got used to the medication, though, those spells passed, and I could sleep through the night without my spasms waking me up early.
2. Our Medical System
Many people think that getting the medical part of the healing journey done is easy, but there are often long wait times, high costs, and dismissive physicians in the world. It is harder than it sounds.
Getting Referrals
Often, once you see a doctor about your condition, there are wait lists, lost memos, and convincing that needs to be done before you get the referral you need. When I first started showing symptoms of FND, it was early to mid January 2021. I didn’t get into see a neurologist until February. I was also frequently calling the neurologist’s office to ensure that they didn’t forget about me. To contrast, I didn’t follow up as heavily on my neurologists referral to a physical therapist as fervently, and it took the better part of 2022 to get that worked out. Referrals are difficult to come by and without pressure, they can have extremely long wait times. Don’t get discouraged and keep fighting for the care you deserve.
Finding The Right Medications
Medications are also an area that can take a while and have a good amount of trial and error. The first medication they put me on for FND triggered my seizures, which continued even after they took me off of it. But other medications that I tried with my neurologist had a much more positive impact on my life. The key is to experiment and find what works for you, as it may not be what normally works for your condition. When the symptoms outweigh the benefits, it’s likely not the right medication unless it is only temporary. Listen to your doctor and your body and before long, you’ll get a medication regime that will work as you need it to.
3. Building Your Schedule
Now that we have considered the various parts of our illness and treatment, we need to look at the life you are actually living. What you need in your life may be entirely different from what I need in mine, even if we have the same condition.
Therapy Homework
After having discussed therapies a few times, it is worth mentioning that you will want to work any therapy homework in your life. The therapist’s goal is to help you integrate the work you do at therapy into your day-to-day life by giving you tasks to work on at home. Planning to incorporate things like exercises your physical therapist recommends in your life will help those therapies be more effective and net the overall results that you want.
Needs
We all have things we need in our lives. As a single mother, I need a living space for myself and my child. I also need about 8 hours of sleep to be as functional as I like. You likely have similar, if not more, needs. What are the things you must do? With that, look at those obligations and ensure that they actually align with your needs. If you must show up to certain parties or do certain things that only end up draining or hurting you, it may better align with your needs to give yourself permission to let them go. If they provide for needs like working contracted hours, they may be more necessary. But letting your actual needs guide what obligations you honor and what you discard can help you find the time and space you need to really get the most out of your healing journey.
Limits
This is the other side of the coin to the previous point. You only have so much energy, money, time, and space. While some can trade energy, money, time, and space for others, you need to respect your limits and recognize where they can change. Factoring your limits on your healing journey can help you avoid setbacks from overextending yourself. There are some things we need to accept if we are to find peace and even joy in our circumstances. When we learn about and accept the limits, we can’t change. We can heal into a life we love living. No one is perfect, but honoring our limits can help us.
