10 Ways to Manage Your Days With Chronic Illness
A time of illness is often a time to lay low and take stock, knowing that once you recover, you will be better than ever. With chronic illness, such as a cerebral spinal fluid (CSF) leak and any other long term sickness, it can often be a very long time spent feeling lonely, useless, and dependent – and that is not at all a comfortable spot for most people.
I belong to a number of social media pages dedicated to my illness or to chronic illness in general. The common topic is that of feeling that we are a burden on friends and family, and that we have no idea how long this state of uneasiness will last. Let me tell you…most did not start this journey of having a CSF leak ever imagining that a headache, nausea, dizziness, vomiting, and severe low pressure state inside our heads could last more than a day – let alone weeks, and months, and years!
When we say headache, you have to go back to the analogy of diving deep into a pool to fetch something on the bottom. We have all had that horrible squeezing sensation as we immediately claw our way up to the surface to gasp for air with the incredible relief of having the pressure resume to normal. Well, those of us with a CSF leak are spending 24/7 at the very bottom of that very same pool with absolutely no relief from the squeezing, except for when we lay down completely flat in our bed.
If you have a chronic illness, what can you do to make yourself feel useful?
Time spent upright is limited to a few minutes for some, to a few hours for others. So, here are my go-to ideas for how to make my minutes and hours count:
1. Start your day.
Make your bed every day. It does not matter how horrible I feel each day, I get up and make my bed. The idea behind this, for me, is that I will begin my day as though I have the option of getting into bed but not the expectation of needing to be in bed. I sit inclined or lay on top of my bed for as long as I can before I have to crawl in again to take a rest. It sounds trivial, but it means that part of my day started exactly as it did before I got sick and that gives me enough of a buffer to know that a “normal” life will happen for me some day.
2. Have a ritual.
Maybe you have a coffee with a loved one. Maybe you play with your dogs outside. Maybe you go for a walk first thing. Whatever it is, if you set up a ritual each morning, you are more likely to follow it even on the days that you do not feel so well and it may be just the thing you needed most.
3. Have a job.
In our “real” lives, we have a job each day. Whether that involves being a parent and getting all the errands done, or whether you go to a physical job, we all play a role in our family dynamic. Illness often takes that “job” away from us, and that takes away our sense of purpose.
Create a job that only you do. Mine involve a few things that happen at home: I consider it my job to get the mail, so I make the one block trek to the mailbox each day. I also make the special coffee each day. My husband intentionally does not learn how to do this so that he does not take over the job in my stead. If I am not well enough to do it on a certain day, we go without and I take up my duties the next day. I am also usually the one to empty the composter and take it to the back of the garden.
4. Have a chore.
I do all the linens in our house. At least once every week to 10 days, there will be a day that I am feeling well enough to do the sheets and pillow cases and blankets. I consider this to be my duty. One time I do the master bedroom and the next time I do the spare bedroom. We use both, as some nights it is just too difficult for me to be sleeping in the same room as my husband.
5. Take care of another.
In your illness, you may feel that you need taking care of, but you can always do one little gesture or act of kindness that will take attention off of yourself. This is freeing your mind of your own symptoms, and it helps to build compassion for yourself as you help to heal another. A text, a note, a message, a phone call…it does not need to be a momentous act, it just helps me if I think outside of me for a bit each day.
6. Do it if you can.
Let the people around you know, I think I can make breakfast today,” or, “I’m going to try to make dinner for tomorrow.” Set yourself up for success by trying things that are easy at first. I am grateful for the cooler weather because now I can get out the easy crock pot recipes and dinner is made in the morning when I am feeling my best! What a great feeling knowing that I have made a meal that we can share for two or three meals. I know this takes the burden off my husband and gives him a break….and I feel I have a purpose.
7. Reach out.
I don’t know about you, but eight months into this incredible head pain and my husband’s eyes start to glaze over if I mention another article I have read or an insight I have learned. It is overwhelming for those we love to be both caregiver and analyst of our issues. Reach out to someone with your same condition. They have the experience, they understand the frustration, the lows and the highs, the successes and the setbacks. Your partner or loved ones do not and cannot understand the way that someone with the condition can connect the dots for you. Most people are more than happy to help a person in the same boat as them, if they have gained a little insight. Reach out to others.
8. Be honest.
If you are in the low of the lows…it is imperative that you are honest, direct, and prompt with your truth. I hit a very low patch at one point this summer and I had enough knowledge that the way I was feeling was scary. I immediately told my partner and we discussed it for real…that second. We made a quick game plan and we put it into place at once. I was very lucky to understand some of the steps I needed to take to help myself out of that low. It is natural with chronic illness to feel desperation come over you quickly. Please reach out for help!
9. Treat yourself with extreme kindness.
Do something that makes your heart sing each day. Make a list of possibilities for when you feel there is nothing to do or you have no one to talk to. Sing songs, make a video, make family slideshows of your favorite family pics, listen to audiobooks, get your favorite comedian on YouTube and listen to the monologue, make something for someone, send eCards (they can be voice activated on Just Wink), take a bath, massage your own feet, meditate…whatever it is, make sure it is something you love to do.
10. Put your thoughts out into the universe.
The first thing I do each day and the last thing I do each night is I put out my thoughts of goodwill to the universe so that my loved ones and I will be well taken care of. It can sometimes be as simple as, “Please bring love and good health to me and (insert name of family members or friends),” or it can be very specific, “Please make sure that Dr. G has an open-heart and is curious about my illness, wanting to learn and work together with me for solutions.” Another one is, “Please help me to leave it all in your hands as you will know what is best for me.” No matter what you call it – prayer, affirmations, putting it out there…it is one of the most freeing parts of my day. I get to really let loose with all the goodwill I would wish for all of my loved ones, if I were better and able and healthy.
I encourage you to make your own list of 10 things to help you to manage your day and not allow illness to let one day flow into the next, as though you do not matter. Your life here, even in sickness, is certainly worth it for you and someone around you. We will all have our light extinguished some day. If that day is not in fact today, then we have a lesson to impart and we have a purpose for being here, today and every day.
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