Episode 3: Coping With Chronic Illness

The host, Femi the Divine, discusses coping with a chronic illness and shares her personal journey toward healing. This episode delves into tips and tricks on how to take back your life.

Contact info - Femi the Divine

 IG @divinehealingpodcast

 www.thedivinehealingpodcast.com

 femithedivine@gmail.com

Transcript

Welcome to the divine healing podcast. I am your host, Femi the divine. Thank you. Thank you. Thank you for tuning in to the show today. This is your first time listening welcome. And if you're returning from a previous episode, thanks so much for joining us. Today's episode is going to be about something that is very near and dear to my heart.

And it was actually the catalyst that led to my introduction to African diasporic, traditional religious practices. If you listened to episode number one, which was about spiritual awakening, I talked about this and I talked about how chronic unexplained onus is what brought me here. And also at least started my healing journey.

We're going to talk about chronic illness. What exactly is chronic illness? Um, talk about some of my experiences, being a person who, you know, became chronically ill, approaching 30, and also some tips and tricks on how to cope with it, because it can be a really frustrating and devastating thing. And I think people definitely underestimate how difficult it is to have to live a life where you are chronically ill.

Um, people don't understand the toll that it takes. , you know, it can cause physical difficulties, obviously if you're not feeling well, but it also takes a toll on you mentally, emotionally, .  I honestly believe that all illnesses have some sort of spiritual component. There's a reason behind why, you know, you may have been afflicted with something that may be beyond science.

That's my personal opinion, but I think people definitely underestimate how difficult it can be for someone to live with a chronic illness or a disability, especially when many of those are invisible. And it's not really something that we talk about because medical information can be private. 

If you're listening to this episode and you are a spoonie like me, which I'm going to get into what that is in a moment, I hope you find this message and information helpful. And if you honor spoonie, I'm sure you may have someone in your life who is, I hope you find this information helpful in how to support or assist them, even if it just helps you to gain a greater understanding of what their day-to-day life is like.

Let's talk about what is a chronic illness.  Per definition, a chronic illness is a condition that lasts more than one year that may require ongoing medical treatment. It could be something that is incurable, but maybe it's treatable or managing. It could be something that can be cured. Um, but it may take an extended period of time to get to that point.

Um,  chronic illnesses typically impact daily activities of living.  A chronic illness can be something that is lifelong. Something I'm starting to see now in this post, I guess it's not even really post COVID cause we're still in the midst of it, but a lot of people are having lasting medical effects from COVID.

 I remember seeing a post from someone on Instagram and it sends a link to an article about a young lady talking about her experience after having COVID. She had gotten rid of COVID, but she talked about how her life had basically been turned upside down. And now she has all these doctor's appointments she doesn't feel well, she can't work.

She doesn't know how she's going to feel day to day. Basically she was just overwhelming. Miserable and frustrated. I remember reading that and thinking, oh my God, like this was my life like five or six years ago. This was legit my life. It's very frustrating to wake up every day and not know how you're going to feel, and also know that that can change at the drop of a hat.

I can wake up this morning and feel fine. And then by lunchtime, I'm on my ass, you know, because I'm not feeling well something suddenly changed or Sunday with some kind of trigger and now I'm down or you could wake up and feel horrible in the morning and it lasts all day or sometimes it gets better.

 It's just really that unpredictable. Piece is what causes an issue. If you don't know how you're going to feel, it can make it incredibly difficult to plan and prepare for things. You know, you may have decided that I'm gonna, you know, go here to this event , and then you wake up that morning and you just can't do it because you feel horrible.

 You've been planning to go to this event for weeks now and now, you know, you physically can't. That can be extremely frustrating. Um,  that's basically what a chronic illness is. It can be something as common as diabetes. It can be something as common as cancer is pretty common. Um, but I mean, we know that while those things are common in our society, both of those can kill you.

It can also be something like lupus or fibromyalgia  multiple sclerosis  pretty much anything that's an ongoing issue for folks can be considered a chronic illness. Um, I use the term spoony a moment ago and spoonie is a term that is used to describe people who have invisible disabilities. Um, it was coined by the creators of the website, but you don't look sick that calm and may basically spooning in someone who is chronically ill and has an invisible disability.

 That's something that we  have to keep in mind because somebody for all, you know, could be in excruciating pain and just trying to push through because they have stuff they need to do. You really don't know.

That's why we have to be careful about getting caught up in, you know, people using handicapped spots and they look fine and all these kinds of things, because you never truly know what someone is struggling with. Just because they look fine to you does not mean that they are well and that they should not be taking advantage of the resources that are available to them.

 Sony refers analogy that talks about energy and chronic fatigue. A lot of times when you have a chronic illness, people underestimate the amount of energy drained from your body when you are not feeling well or where you're in constant pain. I know for me, I do have chronic pain and sometimes it legit feels like there's a red light blinking in your face all day long and you can't get away from it.

It's annoying. It's frustrating is wearing you out. You're irritated. It's just not a good feeling. If you are constantly thinking about the amount of pain that you're in or trying to ignore it, trying to push through to do things you need to do that day, if you can do the things that you need to do that day it's, it's a mentally draining. The spoonie analogy talks about basically the idea that when we wake up in the morning, we have a set number of spoons and spoons represent the amount of energy we have for the day. Let's say we each wake up and we have 10 spoons. You're healthy, you're normal. You got a good night's rest. You have 10 spoons.

As you go throughout your day, each activity that you do is going to take up 1, 2, 3, however, many of those spoons, once you've used those spoons, you know, you only have a certain number of remaining out of the total. Well, for chronically ill people. I may wake up today. While you had 10 spoons, I only have five and because I'm not feeling well, it may take more spoons for me to complete a simple task.

So while it may take one spoon for you to take a shower and get dressed, it might take me three. But remember you have 10 spoons. I only have five. Now I've used up three out of my five spoons for today, just taking a shower. And I only got two left, but I still have all these things that I need to do.

The idea is that some days you don't have any spoons, some days you run out, but once those spoons are gone, you're done. You're done for the day. Your energy is done. So you can imagine how frustrating that can be for someone when it's something that's really beyond their control. Another way to think about it is especially for people who deal with chronic fatigue, chronic pain is everybody has a cell phone, right?

So you plug your cell phone. And most of us before we go to bed, so it's fully charged and ready to go for the next morning, before we embark on, you know, our day, whatever we're doing that day. So you get up in the morning and your phone was charged and you take it and you go on about your day, right? As you do things on that phone throughout the day, the battery is going to decrease.

You started a hundred percent and it's going to go down. Eventually you're going to need to recharge it. But for someone who's chronically ill, think about it as, okay. Well, I thought I plugged my phone in overnight, but the charger must've came unplugged out of the wall. So now my phone is only at 50%.

I'm rushing, I'm running late. I don't have time to charge this phone. I'm just going to go ahead and go ahead on the word. So now you're operating at 50%, but you still have to get through your whole work day. You can't plug it in and charge it. Say you can't find your charger. Well, when your phone gets to 0%, what's going to happen.

It's going to die. Right? Same concept. That's pretty much how the idea of spoons work is the same concept. You have all these things that you may need to do today, but you don't have the energy to do them. And a lot of times that can lead people to a space of display. Depression. You may feel like a failure because you can't do all of the things that you know, you need to do.

Maybe you don't have anybody to help you with those things. You know, we still have to go to work. We still have to grocery shop. We still have to clean our house. We still have to take care of our kids. We still have to take care of ourselves and it can be very difficult to do that when you feel like you're always in the hole, energetically, because you're exhausted.

The other thing is if you're exhausted all the time, how well are you actually functioning? I think what, my best days I functioned at about 85% compared to other people's 100%. I don't live in a world where I have a pain-free day that just don't exist. I have, what's considered a minimal pain day, you know, where I may be feeling pretty good when I get up, but something can happen at the drop of a hat.

And that can change that. Just keep in mind that you never know what somebody else is truly struggling with. And if you are someone who deals with chronic illness and chronic pain, you definitely understand the toll that it takes on you as a person, because it can be very difficult. It can be very difficult.

It can be very discouraging. It can be frustrating. You can be angry, it can be stressful. You be very stressful not knowing how you're going to feel every day when you wake up. And if you're not going to be able to accomplish the tasks that you need to accomplish, if you're not feeling well, you may be back and forth to the doctor.

You may have increased medical bills and costs. You may have less money to work with because one you've been in and out of work because you're ill. And then on top of that, you have increased medical expenses. That's if you can even work because some people can not, it can be a very stressful existence.

For a lot of people. And I think people on the outside looking in is something that they will never, ever, ever understand.

And you go through a period of time where you actually grieve, you grieve the loss of your former life, all of those fundings that you used to be able to do, you may not be able to do anymore. You may have to cancel plans. Friends and family may not understand that they may think that you're being lazy.

They may think that you're being flaky. They may think that you're acting funny when really you just can't, you just can't do. Um, I feel like we don't really talk about these kinds of things. Most of us suffer in silence, which isn't necessarily helpful because. People don't know what it is that you're dealing with.

And again, if you look fine, they really don't know. They may make assumptions that you're fine. Um, but really you're suffering in silence and barely holding it together, which can be a very lonely existence. So just understand that if you have someone in your life, if you are not the person that is chronically ill, that they may really be having a hard time and they need your support and assistance so that they can heal from whatever it is that they have going on.

Whatever that illness is, a healing may just be getting to a point where you feel better. Healing may just be getting to a point where it's managed, you know, and there's minimal disruption to your activities of daily living, but understand that being chronically ill. It's very, it can be very stressful.

It can be debilitating. It can be depressing. It can be a miserable existence. Like I'm not even gonna lie about it. It just can be a miserable existence. Also knowing that sometimes you may not feeling well and you don't know why the diagnosis process can be difficult for people. Um, me specifically, I touched on this in the first episode, but I was diagnosed with fibromyalgia when I was 31.

Um, I went back and forth to the doctor looking back at it. I realized I had been back and forth to the doctor for years, probably like four or five years before I got to the point of diagnosis complaining about different things. I remember. There was a situation shortly after I got married, where I woke up that morning to get dressed for work.

I worked in a bank and I always dressed up and I went to put my foot down in my shoe and pair high heels. I always wear high heels every single day. And I had excruciating pain in my knee. When I tried to stay in and you're not gonna put any pressure on my knee.

So I put a pair of flats on it and I went to work and it just seemed to be, you know, ongoing. It was causing me difficulty I couldn't bend my knee. I was having trouble trying to walk. So I made a doctor's appointment. I remember this habit in like August and I kept going back and forth to the doctor.

At first they thought it was runner's knee. And then they thought it was tendonitis. And then they thought I had a pinched nerve that was causing the pain and then they thought this. And so they couldn't quite figure out what the issue was. And I was like, okay, well, I'm in pain. I'm having trouble walking.

I still have to work every day. I was still a grad student at the time. You know, I have to look presentable for work. So I have to wear shoes like what exactly is going on here? So I think finally in October, they determined that it was tendonitis in my knee and that I had to go to physical therapy. So think about, I'm dealing with this from August now, all the way to October.

And I remember there being a lot of situations like that, where I went to the doctor and I complained about this, and I complained about that and they couldn't find anything. Finally things began to ramp up because I'm in a very stressful job situation years later. I remember going to my primary care doctor and she was older black lady.

I picked that particular practice because I wanted to be a patient of hers. But at the time she wasn't accepting new patients and they assigned me to somebody else. So now a few years later, she's accepting new patients and I make an appointment with her I get to her and she really. Jumped on it, like, okay, you have this and this going on.

Okay, well, let's check this out. I'm going to send you to this specialist. I'm going to do this. We're going to do this kind of testing. I wasn't until I got to a really good doctor that we really started to look into my issues. And she thought that I was in what she called some kind of pre lupus state based on the symptoms that I had.

And she sent me to a rheumatologist who did some additional testing. Um, all of which came back negative. That's one of the things with fibromyalgia. Um, there is no test for it and they'll test you for a whole lot of other things and the test will be negative. So basically it's a diagnosis of exclusion.

So we've tested you for this, this, this, this, this. And everything's negative. So since we can't find anything, we're going to say, okay, well it must be this. Um, let me back up because I don't even think I explained what fibromyalgia is.

For those who do not know, fibromyalgia is a disorder of the central nervous system. There are over 200 symptoms for fibromyalgia and everybody does not get all of them. Um, but basically it's a condition where the payments afters in your brain misfire and it causes nerve pain throughout the body. Basically you have Phantom pain here and there.

But there's not anything wrong. Common sense would say, okay, my knee hurts. Something's wrong with my knee. That may not necessarily be the case. It's just that your brain is misfiring and sending pain signals when nothing really is wrong or sending them to the wrong place. And that's what's causing pain.

The other thing is a lot of times the pain is amplified. You're in excruciating pain and there's nothing wrong, which can be very frustrating because it's like, well, if there's nothing wrong, why am I in pain? It, how do I get it to stop? Um, it often imitates other disorders like lupus, rheumatoid arthritis, sometimes Ms.

Um, so your Dr. May think that you have one of those other things. There's no cure for it. There's really no dedicated medication for it. Or they can really do is treat your symptoms. For a lot of folks, it's nerve pain, it could be muscle pain, it could be bone pain, it could be debilitating fatigue, um, which really renders your users.

Cause you can't really do anything if you're exhausted all of the time. And we experienced brain fog or fibro fog, which basically means that for me, it just feels like somebody put my brain in a blender. Like nothing makes sense. I get this weird queasy headache type thing and you make weird mistakes.

Um, Like I locked my keys in the car. One time on a car was running. Um, just, it's just kinda like your brain is jumbled and you can't really figure out what's going on. And I know if I'm in a really bad foggy state, I just have to go to bed. Like, there's nothing else I can do. I'm done for the day. I just have to go to bed and that's that.

Um, there were a lot of unanswered questions and finally, we get to this point of getting to a good primary care doctor and we get to who gets me to this good rheumatologist who does the testing that I need. And now we have a diagnosis. Okay, great. So now I know, okay. I wasn't crazy. Something is wrong.

So now, but you know, there's a relief kind cause okay, now you know, what's happening. Okay. So now I can look into it now, what do I need to do? And then you try to do those things, but there's no relief. Western medicine. Work for me, it didn't alleviate the problem. Is it an alleviate? The symptoms? I tried three or four different medications.

The first one helped me to sleep better at night because that's one of the issues. When you have chronic pain and chronic fatigue, you may not be able to sleep at night because you're in pain and you're up in the middle of the night. And or you have what we call pain, insomnia, where you can't sleep because you're in pain.

Well, if you've been up all night and you've been in pain, well now you got to get up and go to work the next day. And you're exhausted because you've been up all night and you're still in pain. It's just really a miserable existence. You have all these unanswered questions even after having the diagnosis, and then they tell you, okay, you have this, but there's no medicine for it.

There's really no test to even confirm that you have this.  We can just try to make you as comfortable as possible. So you're like, okay, great. Now what, that's really what led me here because Western medicine wasn't particularly helpful. Like I said, I tried multiple medications. Most of them, there was a couple that they did help me sleep.

By gaining better rest, I had less pain during the day, but that didn't always work because sometimes you get thrown a curve ball and you're down and you have no control over it. Like weather, weather is a big trigger for me. I know if it's raining, I'm probably gonna be down for the count that day. If it's super cold outside, or there is a drastic temperature shift where it was warm during the day and then a temperature drops and it's cool at night.

And then it goes back up during the day. I know I'm going to have issues. Um, but then sometimes it rains and I don't. It's just one of those things that you really don't have. Control over. Um, some of the other meds were stupid expensive, but did nothing for my pain. They caused a lot of weight gain. Um, so now you know what, I'm still in pain, but now I'm fat because I'm on this medicine.

Like what's the point in taking it. So as not taking the medicine. So that's really what brought me here because Western medicine did not help. I had to find other methods to try to ease the symptoms to get my condition to the point where it was managed. If you are a chronically ill person or you have someone in your life that is chronically ill, I'm going to go over some tips and tricks on how to get to a point where you can take back your life and have a good quality of life.

One of the things that I often get from people when they find out that I am a chronically ill or invisible disability person is, oh my goodness. I would have never thought. You look great. You look amazing. You're always busy and doing all of the things and that's very true. I am busy and doing all of the things, but I think one of the things that we have to remember is that sometimes you just have to push through and do what you need to do so that you can get on with your life.

You learn to function at a pain level that is much higher than the average person's. So, you know, act can be excruciating pain and I can still go on about my day and do things that I need to do because I'm so used to functioning in that space. If it's really, really bad, you won't see me. I'll stay home in the bed all day and sleep probably.

And those days now have become few and far between because I have found different ways to. Minimize disruption to my daily life and daily activities of living daily activities of living are things that we do on a every day basis. Typically they are a marker of someone being disabled if they can't complete some of those things.

It could be as simple as bathing, getting dressed, Carmen, your hair, brushing your teeth, cooking meals, walking, sleeping, all things that we all have to do, many of which are just taking care of yourself, um, on a day to day basis. But if you're having difficulty doing any of those things or many of those things, it can make your life very difficult and it can be hard to do daily activities of living.

What happens is a lot of times we find life hacks to help us get through some of those things. You get to a point where you get over the grief, the grief of your old life and the life that you lost and all of the things that you may or may not be able to do anymore. You get over, maybe the shock of whatever the diagnosis is.

Especially if it's one that's debilitating or it can be fatal you get to a point of, okay, I'm ready to take back my life. I'm ready to heal.

These are some of the things that I did to essentially take back my life. The first thing was to research the condition your doctor has told you that you've been diagnosed at this. Okay. Read up on it, learn about what it is, learn about what type of treatments are available. If you don't feel like that diagnosis resonates with you, maybe get a second, a third of.

Especially if it's something very serious because maybe the diagnosis is not correct. A lot of people talk about being diagnosed in my situation with lupus and other things and coming to find out that's not what it was, you know, can you imagine being misdiagnosed with something and then going around in a loop and not being able to get the care that you need because you were misdiagnosed.

There's definitely something to think about. Researcher condition advocate for yourself as well. When it comes to dealing with your doctors, when it comes to the folks in your life, when you need assistance at also advocate for yourself at work, if you are not feeling well, but you still have to work, you may need to make some accommodations.

For me, that ended up being a whole career change. Everybody else may not be able to do that. Everybody else may not want to do that, but take a look at the resources that are available to you at work. I know I had to go through what was called a reasonable accommodation process. There was paperwork that had to be completed by my doctor.

Um, one of the issues that I was having was I was having difficulty with my hip joints and sitting in my knee joints and sitting for long periods of time. Well, for many of us who work a desk job, you may be sitting at your desk all day long. You know, you only get up for a break. Once HR became aware of the accommodations that I need needed through filling out the paperwork, having my doctor fill out the paperwork, they got me a standing desk.

They had an ergonomist come out and sit with me to adjust the desk and the chair. You know, they got me a foot rest and some other things, they moved my desk to a more quiet area on the floor because I was having sensory overload and, you know, panic attacks. So they moved my desk. Um, at one point it got to a point where we weren't working from home.

Like we are, most of us are now in this COVID state. It was just kind of a, you know, if it was bad weather or something like that kind of situation. But through that process with HR, I was given permission to work from home whenever I needed to, because of my disability. I remember there being a battle about that with my supervisor.

And when I took it to HR, they came back and said she could work from home whenever she wants, especially if I'm having mobility issues. And it's difficult for me to commute to the office. Um, I'm going to get more work done if I'm at home and I'm comfortable as opposed to having to fight with traffic to get there.

I'm exhausted by the time I get there, or for me, I was taking mass transit because I've worked downtown. So that in itself was a whole trip, you know, trying to get on the train and then get off the train then having to walk to the office. Um, so that may, there may be reasonable accommodations in place.

Maybe you can work from home more often. I know a lot of us are working from home now, so that may be an issue, but also understanding that if you can work from home now, you're not having to deal with the commute. Now you're not having to get up and get dressed. remember that whole spoon analogy. Well, now if I don't have to get fully dressed, that may allow me to conserve some of my energy to do other things.

Now, if I'm not having to commute, that's not taking extra time and energy away from me. now again, I have more energy to do other things. Some other accommodations may be, you could cut down your hours and go part time. I mean, I don't know how that would impact, you know, that may impact folks financially, but you may be in a situation where you can take a leave of absence from work.

I did that. You may be able to go out if your job, um, offers short-term or long-term disability, or if those are policies that you have paid for and put in place with your own money, maybe you just need to take some time off as it at you. Um, but just making sure that you are utilizing all of the resources that are available to you.

If we're talking about health insurance, usually your health insurance is tied to your job. Taking a look at all of the health plans that are available. I know for me, I typically pick whatever plan is the most expensive. Because that's important to me. My health is important to me and I choose to make the extra investment if I can.

Um, that also means that I have open access to see whatever doctors I want to see that also means that I am now not needing a referral. I can just book the appointment and go. Some of these things are just going to make it easier for you to get the care that you need, because maybe the doctors in the HMO suck, or they're not willing to go above and beyond and give you the additional testing or other things that you are needing, or maybe they are limiting you to only certain specialists.

I like to have the ability because I know that I need additional medical attention, that I can see whoever it is that I want to see. And I don't need to wait for no referral paper. I can just book the appointment and go. Um, if that option is available to you and you are a chronically ill person who sees doctors a bit, then that's something you may want to think about.

You also may want to think about which plan has. The cheaper copays. If you're going back and forth to the doctor, a lot copays can add up. I may want to go with the plan that has the cheaper copay so that, you know, it doesn't impact my finances as much. If your job offers FSA, flexible savings account or HSA health savings account, can you funnel money into those?

You know, there was a point in time where I was going to physical therapy and my copay was $60 per session, two to three times per week, having that money in an FSA and being able to hand over that debit card because that money was preloaded was definitely helpful and not, and it didn't force me to have to rearrange my budget to now, you know, pay an additional 60, 120, $180 a week.

On top of my regular medical appointments. There was a point in time where I had doctor's appointments every single week with a different person. And I was seeing 10 different doctors that 30, $40 adds up very quickly. just make sure that you're using all of the resources that are available to you.

If your job offers insurance that will cover additional testings and therapies take advantage of that. I did aquatic therapy in the pool. That was a game changer for me. That was one of the only things that really helped to relieve my symptoms. I did that a few different rounds. Usually during the winter months, that's something that I have to do because the cold air causes stiffness, um, and pain.

Maybe it's physical therapy online, depending on the nature of your disorder, maybe a psychotherapy we've talked about this in the past two episodes, people underestimate the mind body connection, and a lot of times, especially for fibro folks for folks who are. Follow lady Gaga, lady Gaga has fibromyalgia and she's spoken outwardly about her experiences.

That was one of the things that she talked about. She said, once she got her mental health in order, it helped with her physical health and pain, as it related to the fibromyalgia. If you have access to therapy, go to therapy because keep in mind being chronically ill is draining. you may just need someone to talk to you and objective third party to talk to you about what it is that you're going through, because maybe folks around you don't understand, or you don't feel comfortable talking to the people around you because medical issues can be very personal.

Um, definitely take advantage of any sort of therapeutic or support group options that may be available to you. So we started with researching your condition, being informed, using your resources. The next thing may be to seek holistic or non medicinal alternatives. So I talked about aquatic therapy, maybe acupuncture is a good one.

Yoga people underestimate the power of yoga, stretching. Yoga is also one of those mind, body connection things, um, where it helps you to stay on track. It helps you to gain relief from all of the thoughts and things that are in your brain. That may be overwhelming. Um, 

I think a lot of times folks think about yoga as a form of exercise. We think about, I used to love Vinyasa before I began to have medical issues, but now I couldn't even keep up with the Vinyasa if I wanted to. And that's okay, but do what you can. If you are somebody that is dealing with chronic pain.

One thing I did was I searched for, or YouTube. I looked for yoga for chronic pain, and there were videos with things that I could do. Also remember that a lot of times when you go to therapy, especially physical therapy, those stretches that they give you a yoga stretches. Sometimes just taking a few minutes each day to stretch will help.

Also remember that baby steps are still progress. So something I had to learn throughout this process was how to pace myself. Obviously, if you aren't doing well and you try to do all of the things, you're probably going to crash. We still have to do many of the things, because some of those things, again, our daily activities of living are things that we need to do just to maintain our lifestyle.

But I know that if I try to clean my whole house on a Saturday, by Sunday or Monday, I'm going to be stuck in a bed all day. So learning to pace myself. for me, that is breaking things into smaller chunks. That may mean, okay, well on Mondays, I'm going to vacuum my floor on Tuesdays. I'm going to do my laundry or even laundry can be daunting.

So doing one small load a day, if you can, as opposed to trying to sort and wash all the laundry in one day at my house, my laundry room is in my basement going up and down them steps multiple times. And it's a probably ankle farewell for me. That's something that I now req nice because I learned. My limitations.

So in pacing yourself, you'll learn your limitations and how to spread things out, or break things out in chunks so that you can accomplish the things that you need to accomplish. But without overdoing it, basically, breaking things into small chunks, maybe scheduling them in and also being flexible because keep in mind, you can schedule your whole day and then wake up and feel like crap.

And then you do none of the things that you scheduled for that day. Maybe you have to bump them to the next day, but also allowing wiggle room for flexibility. I think the biggest thing for folks that are chronically ill is to remember that your life is now different from other people's and they're going to be changes and shifts, you're going to have to learn to adapt change and accommodate.

Those shifts in your life. It may be something as simple as outsourcing things. if you can't clean your house, maybe find a housekeeper. Something I had to let go of was doing my own hair. I used to wash your style, my hair every Sunday for work on Monday. And at this point that's not something that I can do because I have limitations with the strength in my hands.

I also have probably have double the amount of hair that I did back then. So I chose to go back to the salon and pay somebody else to do it for me because that's less stressful for me. I picked styles that are low maintenance, that don't have to be maintained every day.

The two hours that I spent in the salon for a protective style, that's going to last me six to eight weeks. It's worth the money to me instead of me trying to wash, blow dry style and do all this stuff, which may take me all day on day. And then I may be in pain the next day from holding my arms up in the air, you know, trying to wash, blow dry and detangle.

So knowing your limitations knowing what you can and can't do. Maybe grocery shopping is something that's difficult for you. Now you can order from Instacart or Shipt or one of those other delivery services, or maybe doing a curbside. So where you're not having to do the shopping yourself, but you can pick up your groceries.

I'm going to load them in the car for you. And then you're just responsible for loading them from the car to the house. I know grocery shopping was something that was very difficult for me in the beginning. It was something about the pushing of the cart in the store that will wear me out. I will go to the grocery store and then I'm going to take, take a nap because there'll be so exhausted.

I remember days where I would go to the grocery store after work. And I would sit there in my car trying to get myself together to go into the store. Sometimes I wouldn't even go into store. I'll just go home. I would say when I go home, because I can do it. So, you know, recognizing that now I can grocery shop

um, you know, I may get a little card or get a basket. Um, I may make more frequent trips to the store and make smaller purchases so that I'm not having to lug, you know, 89 bags to the car and through the door, and then having to put all that stuff away after walking up and down in the store.

Um, make use of your resources and outsource where you can, if that means less stress for you, if that saves you time and energy, if that makes your life easier, then in some situations, it just may be easier to outsource.

The next thing I think a lot of us may struggle with is don't be afraid to ask for help. Sometimes we struggle in silence and there may be people around us who don't even realize that we need help and they won't know. Until you ask. And I know we live in a world where, you know, we kind of guard our medical issues, or you may not want to ask anybody for assistance because you may feel ashamed.

You may be embarrassed. Don't feel like that because at the end of the day, none of us asked for this life and none of us asked to be ill. None of us asked to have a chronic illness. None of us asked to be disabled. you should not have any shame or embarrassment around that. It's beyond your control.

We all need help from time to time with different things. Don't be afraid to ask for help. I mean, even talking about, you know, the reasonable accommodation process at work, I mean, that is asking for help. If you have family and friends around that are available to assist you, let them know that you need help.

Sometimes it's really just as simple as asking because they really don't know. Until you break it down, especially if you're one of those invisible disability, people who appear to be fine. Think about making lifestyle changes. So we talked about maybe making changes at work, maybe undergoing a career change.

If you can maybe reducing hours, maybe choosing a work from home position or asking your current position. If you can work from home, if that's available to you, but just finding things that will make your life easier. I know I ordered a robot vacuum. Vacuuming is something that takes a lot of energy.

And for some reason, whenever I vacuum, I always have pain in my arms and my shoulders the next day. So I ordered a robot vacuum. That's going to vacuum these floods. On his own. So that's something that I don't need to do. Um, something else that may seem kind of simple is a lot of times when you go in a grocery store they have prepared items.

I'm not having to stand and now cook a whole meal. I may get items where I can just pop it in the oven, or I try to avoid frozen and processed food because my system doesn't do well with those things. And sometimes they're not healthy. You know, you have to worry about the salt stuff like that. But even just in the produce section, a lot of times they have vegetables that are pre-sliced and pre-cut because I have an issue with the strength in my hands.

That's difficult for me. it may cost me a few extra dollars to buy the peppers that are already pre-sliced. But if that makes my life easier and reduces me now having to deal with pain in my hands from trying to cook well, then that's the option. We're going to go. You know, because it may come down to either I'm going to struggle through this and I'm going to be in pain from trying to cook this meal or going to bed and not eating anything out of frustration and exhaustion.

Certainly something to think about. The next thing is you want to be able to manage your stress level. You are stressed out. Your symptoms are going to be aggravated wherever stress management looks like for you. If you'll notice that has been one of the common themes through these episodes, managing your stress, self care is the next one.

And taking care of yourself, finding things. Again, our positive coping mechanisms that help you out when you have stress that could be prayer. That could be meditation, that could be seeking therapy that could be seeking support. We talked about support groups that could be talking to a trusted friend or advisor about your experiences and your struggles that could be sharing your experiences with other people.

I know as I begin to post about some of my struggles and the things that I was going through, people post about everything else. Why not? And I didn't want it to come across as complaining. Um, I found that when I was diagnosed and I tried to find community online, Facebook groups and things like that.

I don't know. It just seemed to me like a lot of the groups were overwhelmingly negative. Like it was really just people complaining about all of their symptoms. All of the time. Woe is me and don't get me wrong in the beginning. You probably do feel like that because you don't know what's going on now, you've got this diagnosis.

You feeling like crap, you may feel like your prognosis is terrible, but where does wallowing in? Self-pity in crime? Woe is me help you take back your life. That was one of the reasons that I was led to start this whole podcast, because once I started to share about my experience, the immense amount of messages that I got in my inbox from people, you would not be leaving people reaching out and saying, I'm sorry, I didn't know you were dealing with this.

I'm sorry. I think I may be dealing with this. Can you help? What doctors do you see? How did you know, what symptoms do you have? What did you do to try to find me leave? if we are talking about those things in a DM, well, maybe put it out on front street and talking about it on your profile.

I found that a lot of the Instagram accounts that relate to chronic illness, maybe not specifically, fibromyalgia's tend to be a lot more supportive and uplifting than those Facebook groups. I remember searching for a podcast on fibromyalgia when I was diagnosed and there wasn't one at all, which was part of where I got the idea for starting this podcast.

And then as time evolved and I grew, and I began to feel better, I realized I didn't want a podcast about just fibromyalgia or chronic illness, but more about my journey in getting to the point of healing. Remember that we must take care of ourselves. That relates back to self. Rest and take breaks when needed.

I know we live in this culture where we're busy, busy, busy, and we feel like we have to keep up and we have to push through. But sometimes you just can't sometimes you need to take a rest day for days. Sometimes you need a mental health day. You seem to lay down and rest. Sometimes you don't have a choice because your body is going to force you to, but rest intake breaks when needed.

If you're not feeling well, excuse yourself. I used to do it all the time, especially when it comes to these jobs, because at the end of the day, your health is more important than any job. And I know we all have bills to pay, and I know we all have things to take care of, but if you died today or tomorrow, that company will be there posted your job and gone on with another applicant in.

They want bodies in seats. A lot of times just to do jobs, they don't care about you and your health, unless you're fortunate enough to work for a company or an employer that does. And there are some employers out there like that. And that may be something that you want to take into account, knowing that if you are chronically ill, keep in mind that there are certain things in place for folks like we talked about.

If your job has short-term disability, long-term disability, the amount of sick time that's available to you. Sick leave. That's something that I looked at when I looked at jobs, I definitely looked at the health insurance piece because I knew that I was going to have lots of doctor's appointments and medications and things.

So I wanted to make sure I had the best health insurance. But also the culture of the company, because if you're made to feel guilty for being out sick, that's even more stressful. And you know, when you come back, you're going to have a pile of work waiting for you. That's even more stressful, you know, when you're really just trying to focus on and prioritize your health work is the last thing that you're thinking about.

Also thinking about the stability and the job security, you know, when you leave and go somewhere else, you know, if you had FMLA in place at your last job, having to reapply for it, All over. And usually you have to be the company for a year before they can kick in. So these are all things that I personally think about.

Obviously I've been in my current job for a little over three years now, and I don't intend on leaving there anytime soon because all of those things that I just discussed, I was able to find in this particular position, and those are things that are important to me because I know as a chronically ill person, I need that additional support and resources, as far as self care goes, make sure that you are eating well.

If you're eating a bunch of crap, you're not going to feel well. You're sleeping well at night. That can be difficult if you are in pain. Maybe thinking about, you know, if you need to take medications, are there other things that you can do to relax, maybe coming up with set morning and evening rituals.

I find that if I have a ritual and I have certain steps and I do things in the same order, it helps me to stay on track because. It's again, broken down into chunks. Okay. First I do this, then I do this. Then I do this and that makes it easier for me making sure you're going to your doctor's appointments, making sure you're staying on top of your testing and your blood work and things that need to be done.

Making sure you're communicating changes to your doctor in case there's something going on that they need to look into, making sure you are doing all of the things that you need to do to ensure that your health is optimal at whatever level that is for you.

We talked about being flexible. And we talked about sharing your experiences because you may in fact help someone else. As that, all of that. Please extend some grace to other folks because you never know what somebody else is dealing with. There are many people that are walking around that are not doing well.

That may have chronic illnesses that they're dealing with. And a chronic illness can be something like depression or anxiety. You really just never know what people are dealing with and why they are, you know, in the situation that they're in or why they're doing the things that they're doing. And in some situations, really not any of your business.

But I think that as society as a whole, if we just express more compassion towards other people and extended grace toward other people, you know, we could be more understanding of what other people look going through at this point in my life, after implementing these things that I've listed out and taking back charge of my life, you know, I'm at a good place with my health.

There was a point in time where I had doctor's appointments every week. I remember I saw my primary care doctor every 60 days. Then it moved to 90 days. Then it moved to six months, then it moved to, okay, we'll come back once a year for your yearly checkup, with the rheumatologist. It went from 60 days to 90 days to six months to call us whenever you're having an issue.

You know, it went from being on multiple medications to being one nine.  Obviously depending on your disorder, if you're on medication or not may differ because somethings you do, you may need to take medication for. And also researching and understanding the medications that you're taking and the toll that they're going to have on your body.

 Some people may be anti-medication, but if it's something that's available to you and it's going to make you feel better and you research it and you feel comfortable with it, know that it's okay to take medication. If you need to. The goal is to feel better not to just avoid medication.

If medication is not something that you want to do, look into holistic methods and remedies. A lot of the things that I'm going to talk about on this show helped me to get to this point. In the first episode, we talked about identifying what was happening with the spiritual awakening. It's extremely interesting to me, that fibromyalgia symptoms aligned with Ascension symptoms.

Definitely be realizing that there's a spiritual component here. I find that a lot of spiritual folks do have chronic illnesses, or let me back up a lot of firearm out or folks do have spiritual gifts. That's been an interesting Lincoln connection through this process, but I'm at a point where only go to the doctor as needed.

I don't take any medication regularly. I've learned to manage my stress levels to keep my symptoms down. Like I said, I talked about the example I gave about the grocery shopping. Well, now I can grocery shop. And sometimes I do, you know, go to the store after work. You know, there was a point in time we're working all day and then trying to grocery shop that was too much on one day.

You know? Recognizing that once you take back your life and you take baby steps, it will get better. You will see progress, you will see growth. There was a point in time where I had 10 different doctors that I saw. Some of them I don't even have to go back and see anymore. They were around to address a specific issue, but that issue has now been resolved.

 Also recognizing that I still have the knowledge and information and the contact information for those folks. Should something pop up or that symptom pop back up. I know how to address it and who to go back and see, we talked about journaling. We talked about therapy, those things help with the mind-body connection. We are mentally not doing well. A lot of times that manifests in our body as physical pain and illness. So essentially by treating the mind, you are also treating the body and the spirit. So that means going there. Generally, maybe seeking community and finding, you know, like minded folks in the community. I have several folks that I would consider fibro friends and we've shared experiences and bounce things back and forth. Maybe that community is finding a support page on Facebook or Instagram or group.

I find a lot of those posts, helpful with people sharing different things that they do. Um, I've made a lot of modifications from the lifestyle perspective. Like we talked about the fact that I chose to go back to the hair salon to have my hair done regularly. That's just something that helps ease my quality of life.

I spend a lot of time in nature as an, a lot of time, and meditation, and praying and doing things that relate to my spiritual practices. I find a lot of times that those are helpful because it helps to ease and redirect your mind so that you're not thinking about the fact that you're in pain or all of the things that you have to do.

I keep my stress level down. Um, I chose to leave some situations in my life that were immensely stressful when I chose to do that. My symptoms lessen. Basically just taking a look at your life as a whole and seeing where there are ways that you can improve things. Change that you can make to lighten the load so that it frees up time and energy for you to focus on your health and the other things that are important to you.

 If you're someone who is chronically ill or disabled, or you deal with invisible disability, just know that I see. Just know that I understand, just know that I relate and just know that no matter how frustrating and stressful in draining dealing with chronic medical issues can be

just know that choosing to take charge of your life will help to improve your outcomes. Now it may not cure the disease or the disorder that you have, but it can improve your quality of life because by shifting your mindset being more positive reducing your stress level, you know, your day-to-day will become easily.

I think a lot of times we underestimate the mind body connection and sitting around having a pity party and being woe is me. It's not serving you. It's not, you can still have a good quality of life while being chronically ill or disabled. And obviously that's going to vary depending on the type of disorder that you have, but by putting in the effort, just know that you are doing the best that you can.

And sometimes that's all that you can do.

And that's okay.

That's perfectly okay. Don't compare yourself to other people and try to keep up with them because you're not other people's. You are a unique person with unique needs, possibly in a unique situation so that you need to make changes and accommodate for that. Don't beat yourself up over it. It's out of your control.

Just continue to do the best that you can and use the resources that are available to you so that you can live the best life that you possibly can. This is your life

we talked about in past episodes in the last episode about loving yourself. That was one of the things that I had to do. I had to go back and learn to love a body that does not function properly all the time.

That was difficult.

But I did it. And I honestly believe that shifting my mindset from this space of, oh no. Why me? This is horrible to, okay. Well, I've been chosen to walk with this particular illness or disorder. So instead of choosing to pity party and be negative, I'm going to choose to walk tall

At the end of the day, this is my life. I'm going to take charge of it and I'm going to do the best that I can. That's all that any of us can ever do.

If you are a person who is not chronically ill, but found yourself listening to this episode, maybe you have someone in your life who is just understand that. We just want someone to understand. It can be very difficult and lonely on this island. You see everybody else moving around you quickly and wondering why you can't keep up, be a support system for your folks, offer assistance way.

You can. If you see them struggling with something, maybe ask them if you can help. And I know sometimes folks are proud and they may not want your help, but it doesn't hurt to offer it. Doesn't

Just know that the biggest thing that we want. It's just to be understood. And a lot of times that alone just makes a world of difference. I know that this topic was probably kind of heavy for folks. For those of you who live the life that I live, I live every single day. This is reality heavier, not, but I chose to share my experience.

And this is part of why I chose to start this podcast because again, I was not able to find.

Those resources at the time when I was diagnosed feeling very lost and confused and trying to find books to read about the topic, my particular disorder, there's really not a lot known about it. They don't know what causes it. As I explained before, there is no specific medication for it. There's no particular test to determine that you have it.

There's just a whole lot of unknowns, which left me to pretty much figure this out on my own. I'm in a good place. My health is in a good place. My symptoms are minimal most of the time. All of that came from me taking charge of my own life and my own healing and doing the work from the spiritual perspective.

By choosing to do the work from the spiritual perspective and practicing all of the things that we've talked about on this podcast so far, and there are plenty more to come. I was able to heal myself and get to a place of equilibrium. So I'm going to leave you all there with that. Thank you for listening.

Hopefully you found this information helpful. If you are a person that is chronically ill or especially for if you're just disposing supporter, thank you for listening. If you enjoyed this show, please leave us a review, a comment, subscribe, all of those things. And before we go, I'm going to leave you all with an affirmation.

I affirm I am bigger than my disability by.