Episode 12: 10 Things Chronic Illness Taught Me

The host, Femi the Divine, shares 10 things she has learned as a "spoonie" or chronically ill person.

Topics Discussed - chronic illness, disability, invisible illness, fibromyalgia, health insurance, medical treatment, using your resources, trying new things, choosing yourself, self care, rest, doing what's best for you, physical therapy, spoonie life, coping with chronic illness and disability, etc. 

Contact info - Femi the Divine

IG -  @divinehealingpodcast or @femithedivine
Web - www.thedivinehealingpodcast.com
Email - femithedivine@gmail.com

Please follow, share, and leave us a rating if you enjoyed the show! Thanks for listening.

Contact info - Femi the Divine

 IG @divinehealingpodcast

 www.thedivinehealingpodcast.com

 femithedivine@gmail.com

Transcript

0:31

Welcome to the divine healing podcast. I'm your host family, the divine, and thank you for tuning into today's show. We are on episode number 12. Now, if this is your first time listening. Welcome if you're a returning listener. Welcome back. And thank you for joining us again. So before I get into today's topic, just a couple of updates. Previously I was releasing on a bi-weekly schedule. We're going to be releasing episodes every other Monday, moving forward hopefully with the intention to do weekly, but for now just every other Monday. So that'll give you guys an idea of when to expect new episodes. And again, if you have not already done, so please follow, please share. Please give us a rating on iTunes, Spotify, wherever you get your podcasts, rating sharing, subscribing files. All of those things, help the show to become more visible to other folks who also may benefit from this information. Thank you all for all of the positive feedback that I've received. If you have any questions, any topics you want to hear discussed on the show, or just want to say. My contact information is in the show notes, feel free to reach out. Today's topic is going to be I'm back with another top 10, 10 things that chronic illness has taught me. So if you haven't listened to, I believe it's episode number three, I talk about chronic illness and I talk about it a bit, in the first episode about what brought me to this path. And it was actually chronic unexplained illness, which led to a diagnosis eventually. I deal with a disorder called fibromyalgia. For those who are not familiar with that disorder, it is a disorder that impacts the central nervous system. It often imitates lupus and a number of other types of disorders, but you don't have to have fibromyalgia to relate to this top 10. I'm just speaking generally about chronic illness in general. These are not in any particular order. So I'm just going to go ahead and roll with the first one. Rest is not a reward. We get caught up in the hustle and bustle of life and it's oh, I deserve to rest. I deserve to take a day off while that's true. Russia should not be a reward. We all should be resting. Resting should be a necessity. One thing I've learned as far as risk goes with chronic illness. If you do not take the time out to take care of yourself and rest your body, rest your mind, rest your spirit. When you need to eventually you're going to be forced to cause you're going to crash. I remember. In the early stages before I got my diagnosis and even knew what was happening, I would be hit with debilitating fatigue, like Betty to fall on my face flat. Like I'm so tired. I'm ready to pass out. There were times where I felt. I needed to pull over because I was driving and I was falling asleep behind the wheel of the car. I remember day I was at a nail salon and the lady was trying to do my nails and I was falling asleep in the chair and it was like, I was sleeping eight, nine, sometimes 10 hours a night. And I would wake up. I felt like I hadn't slept a wink. Rest is not a reward. We all require rest. It is a necessity. Please don't run yourself into the. Because if you do eventually, your body's going to shut down or you enforce you to rest. Rest is a necessity, not a reward. The next thing money spent is an investment in your health and wellbeing. I know sometimes when. Have experienced medical crises or we're not feeling well, maybe you don't want to take the time off to go to the doctor. Maybe don't want to come out your pocket with the copays. Maybe you don't want to try any additional treatments. Maybe your insurance doesn't cover certain things and you don't want to kick the money out of pocket. I understand that any money that is put towards your health, whether it be beforehand I would think something like eating well, dieting, exercising, taking vitamins, supplements, that type of thing that could be preventative. You would put money into those things as well. But also for on the opposite side, taking advantage of treatments and other things, if you can afford to do. Don't feel like that money is wasted. You may have to try it, a few different things to get where it is that you need to be. I remember in the beginning of my journey, my doctor put me on some different medications. We tried a few different ones before we found one that worked there was some trial and error there. Some of those medications were expensive. Some of them not so much, some of them vary by insurance, but that was something that I had to try because I wanted to feel better. Some other things that I tried, I did aquatic therapy which is basically physical therapy in a pool. Because I was having some issues with my hip joint. It's actually easier to treat more than one body part and the water as opposed to on land. So that was something that was available to me through my insurance, that I hate paying those$60 copays twice a week. Yes. But that was really one of the. Things that helped me out as far as my mobility went. So that brings me to the next one. Don't be afraid to try new things. Peer recently I've been trying infusion treatments. Do you remember rheumatologists office? The one that I get is called the Myers cocktail. It's something that is not covered by insurance and it's not cheap, but it was something I was willing to try to see if it would help with my energy level and my fatigue. And it has worked out really wonderfully so far. The next thing don't be afraid to ask for help. I know I've spoken about this in past episodes, but sometimes. Especially when you're not feeling well, you feel like maybe you don't want to bother someone else. Maybe you don't want to burden, quote, unquote, someone else. Sometimes you really need help. And other people are just waiting for you to ask them to step in. So don't be afraid to ask for help, instead of struggling through something that was something that I had to put my pride aside on, struggling through something that I couldn't get done because I wasn't feeling well, or I didn't have the energy or capacity to do, asking for someone to help, could help me get it done pretty quickly and, without stressing myself out. Don't be afraid to ask for help all those people in your life that say, let me know if you need anything. Reach out to them and see if they really met what they said. The next thing advocate for yourself and do your research. A lot of times we go to doctors and maybe they aren't very helpful. Maybe you haven't found the right doctor. It may take you doing some research to find a doctor that's good in that particular field of study, take recommendations from other people. If you know them go online and read reviews, ask for referrals. If you've been given a particular diagnosis and you're not sure about that, seek a second and third opinion, read up on the disorder online, read up on different remedies, different treatments. If you don't want to take medications, we'll get holistic treatments, but speak up for yourself and advocate for yourself. I know for me, it took me getting with a really good doctor and me speaking up for myself so that she could run the additional tests and give me the referrals and things that I needed because for a long time, I felt like I was spinning my wheels and not getting answers, which is very common with fibromyalgia. Many people report that it takes years just to get to the point of diagnosis. There's a lot of, symptoms that you may be feeling, but there's not tests for them. They're not showing up. And it's basically a diagnosis of exclusion. So they test you for all of these other things. Everything comes back negative. So it must be fibromyalgia. But definitely advocate for yourself and speak up. If you don't agree with something, you don't want to do something, you want to try something new, do the research and come to your doctor's appointments, prepared, have questions, have suggestions so that you can work with your doctor or doctors. If you have a team of doctors. I remember at one point in time, I think I saw 10 before. There's for a bunch of different things. And now I've really just see the rheumatologist and my primary care doctor. Definitely advocate for yourself. The next thing, use your resources here. Resources again, can be research. It can be other people maybe who have the same disorder that you have. I have made plenty of fibro friends on this journey who have been a big help to me. I have been a fibro friend to other people, maybe it's reading books about the disorder a major resource that I made sure I took advantage of. If you have a flexible spending account or a health savings account through your job, I know magic. The FSA and they have a debit card. So when I need to go to the doctor and I have to pay those copays, that money is deducted from my paycheck, every pay. And then it's loaded on the debit card and the debit card is loaded first of the year. When I have to go to the doctor and try these different treatments and pay for my medications and all these kinds of things, that money is on that debit card. And so I don't have to worry about disrupting my budget or taking money from somewhere. Or not being able to get the care that I need because I don't have the financial resources because that money is already front loaded on that card that has been a big blessing to me over the past few years, especially during a period of time where I wasn't working when I was ill and I was out on disability because that money was loaded on that card for me to be able to use. The next thing don't be afraid to outsource or delegate that may be delegating to someone else in your life. Maybe in your household, maybe it's your spouse or significant other. Maybe your children are helping you with things. Maybe a friend or a family member is helping you with things, but also think bigger than that, if you can afford to do are there services that you can pay for that will help you, take things off of your plate and make things easier for you? PEI, to have someone come and clean the house for me before I pay to have my hair done regularly, I maintain my own natural hair for years, but it got to a point where I had too much hair and not enough strength in my hands. Thanks to fibro. They deal with it anymore. So I added that back into my budget to be able to get my hair done regularly so that I don't have to try to struggle through and end up in a flood. From washing and detangling and blow drying and styling. And, it could take me a day, two days, three days to try to get through that when I can go to the salon and the young lady can wash me, blow dry me, break me down in two hours for a reasonable price. Maybe you are outsourcing. Meal prep, foods, delivery. We talked about cleaning. People have laundry services, grocery shopping, maybe you're ordering your groceries through Instacart or some sort of service like that. I know at the beginning of my journey, it was very hard for me. There was something weird. Grocery shopping. There was something weird about the pushing of the cart in the store. I swear it would wipe me out and I will have to come home and take a nap after I did my grocery shopping, or I remember there being a plenty of day where I got there and, maybe after work and I was so drained and so tired and I sat there in the parking lot and I couldn't even get myself together to go in the store and walk with this car and get the things that I needed. So I just turned around there are a lot of delivery services. Now you can get your prescriptions delivered can get food delivered. I think COVID has really helped us. Implement a lot of other services and people didn't don't think about that. We think about delivery being a convenient thing, but what about folks who are elderly or who are ill or who have mobility issues or who are disabled, we rely on those services too. Taking advantage of other services and outsourcing tasks to make your life easier so that there's not as much. And strain on you, especially when you may already not be feeling all that. Great. The next thing remember, you are doing the very best that you can and that's all you can do. Some days you may not have enough energy to take care of the things you need to take care of. Some days you may not have the time to take care of the things you need to take care of, but don't feel bad. Don't feel guilty. Because you don't want to push yourself past the limit and overdo it. Something I've had to learn through this journey is how to pace myself. I know that if I overdo things it's going to cause me to have what I refer to as a fibro flare, a flare is basically an uptick in whatever your symptoms are. It can be brought on by a number of different factors. Maybe that stress. Maybe you got a cold or something like that, and that caused your symptoms to flare. I know a big one for me is the weather. When the weather shifts the barometric pressure shifts, it's raining. Ironically, it's pouring down right now as I'm recording this. So I apologize if you hear that in the background, rain is a big trigger for me. Cold weather. Like that cold blue, whether we sometimes get here on the east coast in January and February. So doesn't seem to bother me as much, but definitely storms, Chile rains. Sometimes even it being too hot outside. Can wipe me out and make me exhausted. And sometimes I just have to say, you know what I'm done for the day I am out of spoons. If you all are familiar with this spoony theory from, but you don't look sick.com and I just have to go to bed. I'm done with that. Sometimes it's like that, but I can't push myself too hard. I can't push myself too far because eventually it's going to cause me to crash. So learning how to pace yourself and figure out how many tasks you can do in a day or in a week or in a month. Or, if I know I have to do this, then maybe I have to take a step back in other areas of my life so that you can do that. That you can with planning and preparation. Sometimes that goes out the window. You get a random thunderstorm and all your plans for the day are gone, but don't feel guilty. You can only do what you can do each day is a new day in which you don't get done today. You may just have to put off until tomorrow and that's okay. The next one. Everybody won't understand what it is that you're going through, nor will they care. I think the biggest challenge are faced with chronic illness is the fact that my disorder is invisible. If you know me personally offline in real life, if you've ever seen a picture of me, Or bumped into me on the street. I look perfectly fine and normal. I am disabled, but I don't have really any physical signs of disability unless you catch me on a bad day and maybe I'm limping a little bit or I'm moving a little slow, but in all honesty, most of the time, if I'm having some sort of flare, I'm just going to stay home and rest if I can. So some people may never get to see that. But I think the hard part is people, even when they do know that I have an invisible disability, that they forget all about it because they see you or they're like, wow, you look great. And I see you online and you're doing all of the things and you work and you have a busy life and you travel and you do all of these things and people don't understand how much planning and preparation. Goes into all of those things. They don't understand that I have to pace myself sometimes so that I can do the things that I want to do as well as the things that I have to do understand that everything in my life there's forethought that goes into it every single day. I make choices based on how I feel when I wake up that morning, as well as how I feel before I go to bed the night before. It can be very challenging to balance all of my competing priorities when I don't know how I'm going to feel. Everybody's not going to get that. Sometimes you have to cancel. Sometimes you can't make it to things. Some days you disappear off the grid because you're sleep all day because you're not feeling well. Some activities you may have to opt out or make modifications because. You don't know how your body is going to respond to that? I know one thing for me, when I travel, I used the disability service at the airport. People probably see me being wheeled around in a wheelchair and they're like, oh, what's wrong. There's nothing wrong with her. Looking at her taking advantage of the wheelchair. No. You all know, walking through the airport and going from gate to gate, maybe you have connecting flights and can be very exhausting for a regular person who is not disabled. So for me, taking advantage of that service. Helps me to take the stress and strain off of my body. So I'm not as exhausted when I get where I'm going. I don't tire myself out in advance. So it's more of a preventative thing. It also could be that maybe I just wasn't feeling well that morning when I got up the airports called, the early in the morning. But I always take advantage of that service because it helps me to get to my destination. It makes things easier. For me, it's just hard walking, all those long hallways and trying to drag a suitcase and all of that kind of stuff. That's the service that I take advantage of. That's what it's there for. I don't have to prove to anybody. You know that I'm disabled. I know that I'm disabled and I'm using the resources that are available to me. I don't care what they think they don't have to live in this body. I feel like at this point in my life, I don't have to explain to other people, if they have questions, I'm happy to answer them. I may offer a little bit of information at the beginning, just, so people know what to expect, but I don't go into great detail about it. Something that I grappled with was the D word, the disabled word, if I was to even claim that word, it is what it is. It doesn't have to be a death sentence. As it relates to my particular disorder, it doesn't have to be a bad thing. It's what it is. Everybody won't understand. I'm not going to keep repeating myself about it and everybody won't care. It just is what it is. People can be self-absorbed and only care about themselves. I just have to make sure I'm taking care of the things that I need to take care of and taking the necessary steps to take the very best care of myself. And that brings me to. The last thing on the list. And I guess you could say this is number one at the end of the day, do what's best for you? People will try to give you advice. Oh, you have this disorder. My friend has that and they do this and this. One of the big things people always tell you, oh, just do yoga and stretch and eat healthy. And that'll cure that right up for you don't even know what they're talking about. Can you. And stretching be helpful. Of course, can eating a healthy diet and getting breasts, eight hours of sleep at night. Be helpful, of course, but that's not the be all. And the end, all of those things would benefit anybody. But that doesn't mean that. They're going to benefit my pain level or my symptoms for today. One thing about fibromyalgia, fibromyalgia has over 200 symptoms. Everybody doesn't get all 200 of them and every single day, whatever symptom decides to pop up will pop up. It may not be all of the ones you normally have. And sometimes you get some brand new ones and they pop up out of nowhere. I understand that you have to do what's best for you and also in conjunction with your doctors or whomever else is on your team think is best for you because they know your specific situation. That's also why you have to go into your appointments, prepared and advocate for yourself because you need to talk to them and let them know what your symptoms are. If you're experiencing. Symptoms. If something has changed that way, that they can address it and maybe get you some additional things that you may need. Maybe you need a different medication. Maybe you need to come off of medication. Maybe they need to refer you to some type of therapy or other treatment to help you. Maybe you need some additional tests to be run. Maybe you need blood work. That's why you should come to your appointment prepared so that you can work in conjunction with your medical provider, or if you have a holistic practitioner, whomever, it is that is on your team that is working with you to get you to optimal health so that you can do what's best for you. Again, like I said, everybody's not going to understand your situation and everybody's not going to care, but they don't have to limit your. And they will never experience what it is that you experienced, even if somebody has the same disorder you do that doesn't mean that they're going to experience the same things that you experienced. It may present differently for them. Also, other factors may play a part how old you are, what type of shape you're in, what your diets like I know for fibromyalgia, what climate you live in is a big one. I understand that you have to do as best for you individually. Sometimes that may mean choosing to opt out of things. For me, I made a big career change about four or five years ago. That was something that I had to do. And it's always something that's in the back of my mind because I have to be mindful of what I am doing. The type of work I'm doing. I can't have a job that's particularly stressful. I have felt some type of way about that, because I feel like in some ways, or actually I don't feel like that anymore. I felt in the past, in some ways that, being disabled was going to limit my career.'cause I could not, maybe move up the ladder and the management or some other things, I guess it would depend on the field and the job, but that was a decision that I had to make me decide that's not something that I want for my career. I don't want the headache of being in management. I'd rather just stay in the role that I'm in as an individual contributor. There was a job offer that presented itself to me here recently. It was a great opportunity. One of the things that was a deal breaker for me was they want you in the office five days a week, it was a longer commute from where my current job is. And I don't have to go there five days a week. The hours would be somewhat flexible, but not quite as flexible as the hours I have now. Thinking about maybe if you're going to switch careers, thinking about what does the health insurance and stuff like that looks like if you're chronically ill, you probably have more doctors appointed. Do they have FSA HSA, to make those payments. What is the prescription plan look like? What does the insurance cover? Will it cover those additional treatments that you need to take or experience or. One thing that was a big deal for me was I don't like insurance that needs referrals. I like open access. I'm not going to do an HMO because I want to be able to see the doctors that I want to see. So with all of those unanswered questions, I had to take a step back and assess the opportunity offered to me and I ultimately chose to decline it. It just didn't seem like a good idea for me to turn my whole life upside down for the potential. Of a new position that may or may not further me along in my career. Does that mean that it may take me a little bit longer to get where I need to go or maybe make the salary that I would like to make? Maybe I don't know, but that wasn't a chance that I was willing to take because it was too risky. All those changes at the same time could have put me in a flare, could have caused me to have setbacks with my health. And at the end of the day, my health is more important than anything else in this world, because it's all that I have. So is that all of that to say. You will have to make certain decisions in your life as a chronically ill person, that everybody else may not be happy about. It may impact other people, but at the end of the day, do what's best for you and your condition and your body never have I been in this situation where choosing myself was the wrong decision. We all want to live long, healthy, prosperous lives. So that means that we have to make the choices right. Remember to do who is the best for you? I'd have to say overall. This journey has been an interesting one. I am at a point where I have gotten my condition to a point where it is manageable. I only see my doctor once a year for my physical. I see the rheumatologists probably a little bit more often than that, but on a as needed basis. And that was really through trial and error, trying a bunch of different things, seeing what worked, what didn't work. And then adjusting as needed. I weaned myself off of medication. I want to say the end of the first year, I don't take medication regularly anymore. That was a choice that I made. And my doctor, when I, brought it up to her, she said you did a great job of doing it on your own. The intention was never for you to stay on those meds forever. That's another thing. A lot of times we get caught up in, I don't want to take, certain medication, sometimes you're in a situation where you may need it. The point is to feel better not to not take medicine. If you have concerns about the medication against you, your research, look at the side effects. See if the benefits of seeing their medicine outweigh the cons. See, if it works for your particular situation, some folks just don't believe in taking medicine or they feel they do better without maybe they do better with holistic methods and remedies. But even with that, there's going to be trial and error until you find what works for you. Be open-minded be willing to try new things, use the resources available to you. Don't be afraid to ask for help. Outsource and delegate where you can remember money spent is an investment in your health and wellbeing. And don't forget you're doing the best you can. Everybody's not going to understand or care. And at the end of the day, do what's best for you. If you are a spoonie, like I am, nobody else can understand what it's like to live in your body. If you feel like you want to share. You want to advocate, especially since may is fibromyalgia awareness month. The actual day was on may the 12th. Today is the 27th, which is closer to the end of the month. As I'm recording this, do what's best for you so that you can feel better and live as close as possible to a normal life as you can. So I know that was a mouthful. I hope you all found this top 10, helpful for whatever your disorder may be. Chronic illness can be a wide variety of things. Doesn't just have to be fibromyalgia or lupus or multiple sclerosis or whatever other disorders are out there. Depression and anxiety or chronic illnesses, diabetes, high blood pressure, all of those things can be chronic illnesses and they impact your life on a day-to-day basis. But I hope you found this top 10 list of things. Helpful. Thank you for listening. If you made it this far to the end and before I go, I'm going to leave you with an affirmation as always. I affirm I will do what's best for me. Thanks for listening. Bye-bye.