Slowing Down and Saying No When Living With A Chronic Illness
Hey there. It has been a while since my previous blog posts. Life can tire a girl out. I always try to keep on blogging even when I may be in the middle of a flare up, albeit much slower. I have inflammatory arthritis, and EDS, along with the many chronic issues I now deal with as a chemo, and breast cancer survivor. I have so many goals. But the reality is, that due to fatigue, chronic hypertension, ongoing hearing and tinnitus problems, chemo-induced peripheral neuropathy, vertigo and balance issues, by the middle of the day I am usually out of energy completely. That’s just from getting up, which can take a bit longer when your blood pressure is uncontrolled, and your legs and arms can be on fire while painfully numb at the same time. Showers in the morning? Exhausting. There are days that just getting ready takes all of my spoons. Other days, I feel like I can tackle the world. Those days, I feel lucky to have the energy, so of course I usually over do it. I pay for it later, but for me it is worth it to feel normal every once in a while.
So even with all of the hopes of making most family functions, events, and celebrations, when it comes down to it, I am often too exhausted to make it. Don’t get me wrong, I want to make it to all of these important life events, parties, and functions that I am blessed to be a part of. Some days, I just do not have the energy. Many times it comes down to taking naps in hopes of having the stamina to make an event. Skipping other, less important needs during the day time just to have a better chance of being able to take part in an event that happens in the evening. Sometimes this works. Many days I find I am out of gas far before the scheduled plans come to fruition. Leaving family and friends hanging until the last minute in hopes that you might actually be able to make it this time. Healthy or not, I realize we all have our trials and frustrations in life. We all need to deal with them and function in our daily lives. But when you deal with chronic illness, sometimes the easiest task or responsibly can be the hardest. Some days you need to be comfortable with saying “no”. Not pushing your limits to the brink of exhaustion.
Being chronically ill can be frustrating in itself. This means you don’t usually get symptom free days. Most sufferers have multiple daily symptoms to deal with, and adapt to when possible. They may range from light to severe, but they are still there. Every. Day. It could be chronic pain, nausea, vertigo, neuropathy, or even flu symptoms. Whatever it may be, it is dealt with on a daily basis. Visible or invisible, disabling just the same. That in itself can be completely exhausting. Can you imagine trying to deal with illness daily? For many it is a reality. Needing to schedule everything around your “good times”. Which ironically enough, are usually not the ideal times for others to socialize.
Mornings are usually pretty rough, so breakfast doesn’t always work out. On some days, numb legs take me longer to get out of bed. Usually stretches, and massage can help move this along. Some mornings are worse than others because of hypertension issues. All mornings involve at least a bit of nausea, comparable to morning sickness, if you ask me. Add a little dizziness, and a dash of vertigo. Good times! Said no one ever. But you adapt. Many times, lunch is a slower part of the day for me. My body is often fatigued from the morning events. Some mornings a shower will completely wipe me out. Other days, I may have had a late morning doctor appointment to make it to and will be ready for a nap.
A late lunch date works best for me personally. Most days my body is ready to wind down around 5 to 6 pm. I am at 70%….. By 6 to 7 pm, I may be slurring my words at times, or not exactly making sense in conversations because I tend to mix up my words and thoughts when I get tired. At this point I consider myself to be at about 50% function-wise. In the evening, I am more of a listener than a talker due to this. If there are multiple conversations taking place, or many loud noises or lights, take that down to about a 40% functionality level. When fatigue has taken over, it can make it impossible to decipher differences in conversations. The effort it takes to listen hard enough to keep track of a conversation can be tiring and frustrating. That may sound odd, but overstimulation can leave you confused. When paired with not being able to hear out of one ear due to chronic tinnitus and drainage, I am often not able to keep up with my surroundings mentally, or physically. I have become very good at hiding it. Even removing myself from the situation. But I don’t make excuses anymore. Sometimes I absolutely cannot make it to everything I try to participate with. I cannot hang with the big dogs. And that is ok.
I understand that this can be frustrating for family, and friends as well. I get it. Knowing that a party they have scheduled after 7pm is probably going to be another party that I will miss. Not always. And no, I don’t turn back into a pumpkin at the stroke of 7. But after a full day of taking care of kiddos, seeing doctors, or daily chores I am ready for bed. Sleep. Not socializing. Or driving. I like to think of myself as being there in spirit. With the technology of social media, many times I will catch a picture of whatever may be going on that I couldn’t gather the energy to attend. So, I don’t feel left completely out of the loop. I think one of the hardest concepts for friends to comprehend is that most of the time, I do not look sick. Most people look at you and can’t accept the fact that you look healthy, but deal with chronic illness.
There have been times in the past that I have been in social situations short-story explaining my health to someone, and it left me feeling anxious. I know they mean well. Full of concern, and caring about my well being. I am blessed with so much love. But honestly, there have been times that I would’ve rather stayed home than to go out. Just for the need of feeling understood. Not wanting to explain why I may need to make an early get away. Or why I may have come in a bit late. I don’t want anyone to ever feel sorry for me, or accidentally talk down to me. I am sick, not stupid. We all need to be lifted up, and not spoken to in an infant like manner. If I talk about what is going on in my life, it is because that is what is going on in my life. I am not looking for sympathy. Believe me, you get the light version as it is. To keep things light. You talk about your life in conversation. Accept your friend or family member for who they are as well. It will let them feel more “normal”. Like you’re not constantly trying to fix them. Believe me, if they have dealt with illness for a while, they’ve most likely already tried, or heard of the latest remedy you are lovingly offering up. They have probably ruled out, or had a diagnosis of whatever it is you may have just read in the newest issue of your health magazine. I realize folks are trying to help. I always try to be gracious, but when you have heard it all, a dozen reports on the same topic that may or may not pertain to you, the tenth time can get old. Can we talk about life, kids, happenings….and not fixing me?
I know when you have a loved one that is not well, it is hard for some people to see them that way. Put yourself in their shoes for a moment. Make that phone call, visit, send a card, or set up a video chat. When they seem to make multiple excuses for not making an event or gathering, know that if they have chronic illness, they most likely truly cannot make it. No one likes to visit on the verge of exhaustion. I’m sure you wouldn’t like to find out that the person you loved ended up having a flare up due to over doing it either. So thank you for being understanding. Know that their saying no is most likely saving them from exhaustion, worsening symptoms, flare ups, or even embarrassment. Know that most likely, there are many other events that this person would have loved to attend as well. Maybe they also have a house full of chores that are waiting for them. Laundry and dishes piling up. Windows that need washing. Things that they will get to when they feel up to it. When they have more spoons.
I have personally missed so many parties, and special gatherings due to chronic illness and the many symptoms that can come with it. But you know what? My well being is more important. To feel well for myself and my family is my main priority. Over doing it and pushing my limitations is just not worth it most of the time. Many times resulting in flare ups or sickness. Of course, there are times it is hard to not over do it even when you’re setting limits for yourself. Christmas season can be brutal. Keeping up with the kids schedules, family parties, doctor schedules….ugh! How can one not over do it when dealing with chronic illness? I am definitely blessed with absolutely wonderful days. Life is not all doom and gloom. By far. Life is what you make of the situation you’ve been dealt. Attitude goes a really long way. But some days, brushing my hair is seriously too much.
If you need a cheerleader to remind you to keep yourself as your number one priority. If you need to tell yourself that it is ok say no. If you’re feeling guilt over missing an event. If your loved one deals with chronic illness, or you’re a care giver that is growing impatient. Know that it is completely acceptable to decline an invitation when you or a loved one doesn’t feel well enough to go out. It is ok to reschedule a lunch date, or a doctors appointment when you feel like you’re out of gas. Housework can wait. It is ok to just say no and work on yourself. Make it a priority. Even put it in your planner or calendar. Self care. Physically, and mentally. Learning to do this can increase your quality of life. So important when it comes to living your best life.
So many blessings to count. Life is so good! Concentrate on the positives.
Rest, refuel, and resume.
Best wishes for the best of health to you all.