For me, chronic illness is a very tough subject to talk about and doing it in a public forum is even harder. At my core, I am a very private, introverted person. I don’t like letting anyone in. That is especially true where my health is concerned. But, I think it’s necessary for you to understand what led me to create this blog. Especially since it figures into my processes, recommendations, and almost everything I do.
Let’s back-up a little and let me tell you a little about me. I’m 54 years old, married and have two grown children that live with us. We have always been a very close family, and I love that they are still here and we’re still enjoying spending time together.
I am a very type A person who hasn’t found much she can’t do. I’ve always been willing to try almost anything and I usually stick with it until I’m at least somewhat good at it. This explains why I’ve had three very successful, but very different, careers in my life.
I’m dealing with debilitating chronic health issues, some of which have been going on for decades and some of which are new. I am currently dealing with three chronic illnesses and they greatly impact a lot of my day to day life.
Chronic Illness #1 – Fibromyalgia
For those of you that don’t know what fibromyalgia is, it is a disease of the nervous system and connective tissues that cause almost constant aching in the muscles and joints. It also causes extreme pain in various muscle and joint groups, seemingly without cause. It is considered a chronic illness because they have yet to find any type of cure or even good treatment for fibromyalgia.
I’ve had fibromyalgia for over 24 years now. My triggering event was a slip and fall on ice while I was 7 months pregnant with my daughter. It took us a while to diagnose it, especially since the symptoms started during the end of my pregnancy when many women have lots of aches and pains, so I just ignored them.
After Katie was born, the pain didn’t go away and in some areas, mainly my hips and lower back, it was sometimes excruciating. A couple of months after Katie was born, my internal medicine doctor began running tests, tests, and more tests trying to determine what was causing the pain. I had x-rays, blood work, and MRIs, all multiple times.
Finally, after about three years of tests, he said that he was pretty sure he knew what the issue was but he referred me to one final specialist. He referred me to a neurologist who ran a nerve conductivity test and then did a physical examination.
At that time, to get a fibromyalgia diagnosis you first had to rule out several other possible diseases and then have a physical reaction to at least eight out of eleven pressure points. I responded to all eleven. The requirements for a diagnosis have been increased since that time but I still qualify.
When the neurologist originally diagnosed me with fibromyalgia it was both a blessing and a curse. We were relieved to finally know what was causing all my pain but frustrated to learn that there wasn’t much they could do to help me. Fibromyalgia is a chronic illness and at that time, there weren’t any medications approved for treating even the symptoms of fibromyalgia, let alone the disease itself.
Everyone was telling me to push through the pain because the best thing for fibromyalgia was movement, no matter how much it hurt. That is sometimes easier said than done. But luckily, my doctor didn’t stop there. He tried a few different medications to try to reduce the symptoms, even if they weren’t cures. A very low dose of nortriptyline, an anti-depressant, provided me with substantial relief.
Since that time, I’ve had fibromyalgia flare-ups but was able to manage the pain most of the time. I was almost never pain-free but the daily pain level got down to a level 2 or 3 on the KIPPS Pain Scale pretty regularly.
Over time, my fibromyalgia has gotten worse – both the daily pain level (more like a 5 or 6 by this time) and the intensity and occurrence of the flare-ups. By the time we moved to Florida in 2010, I had to use a cane or wheelchair almost any time a flare-up occurred.
I’ve also had to increase the dose (with doctor’s recommendation) of my nortriptyline to get the same relief. I’ve tried Lyrica, but unfortunately, the side effects were something I couldn’t handle.
I’ve been living with this for decades. Yeah, the fibromyalgia sometimes caused days that I had so much pain that I couldn’t get out of bed, but those were more the exception rather than the rule. I was able to have a very productive life as a wife and mother while working full time.
Fast forward to now, the pain is very rarely below a 6 and many days have at least some area of my body that is a 7 or 8. We recently added Cymbalta to the Nortriptyline which is helping some but not enough for me to get more than 2-4 productive hours per day.
Chronic Illness #2 – Type 2 Diabetes
I actually diagnosed myself with type 2 diabetes in 2006 and then went to the doctor to confirm it. She suggested that I try to get it under control with diet and exercise. So, I went home and radically changed my diet and increased my exercise.
Before the diagnosis, most of my meals were high carb/low protein and I almost always made a dessert for dinner. It wasn’t easy but I started tracking everything I put in my mouth and how it affected my blood sugar, and I got it under control. Sure, I’d slip up every once in a while, but I easily got back on the plan each time.
I also walked almost every day (even in the Indiana snow) and got my morning blood sugar numbers into the upper 80’s and my after-meal numbers in the 120-140 range.
That was until 2010 when we moved from Indiana to Florida. As everyone knows, a large family move is very stressful and this one was no exception. I left all of my family and friends and went to a place where I knew absolutely no one. Even if you’re only planning a small trip, it’s important to consider your diabetes needs whenever you travel.
From all the decisions and costs, through the packing, actual moving, and unpacking, my stress level just kept going up. When you added not eating very well during the packing, moving and unpacking stages, my blood sugar went out of control again. My morning fasting numbers hitting the upper 120’s.
I tried hard to bring my blood sugar numbers back down. Unfortunately, this time, diet and exercise had almost no effect. The doctor put me on Metformin and things got somewhat better but we still didn’t have control.
By 2015, we were definitely out of control. Morning numbers were in the high 200’s and after meal numbers regularly went into the 400’s.
Chronic Illness #3 – Chronic Fatigue Syndrome
This was really the last straw. My diabetes is out of control and my fibromyalgia is worse than it has ever been. On top of that, I have absolutely no energy and am always tired. Things kept going downhill until I ended up in the hospital in March 2015. At that time, they added the chronic fatigue syndrome diagnosis. One of the doctors in the hospital actually told me I was lucky that I hadn’t had the symptoms of it earlier. I’ve learned that it commonly goes hand-in-hand with fibromyalgia. Again, they told me there were no real treatments or cures for this chronic illness.
On top of my increased health challenges, my stress level at work was also going up. This was causing a vicious cycle: my stress would go up, which would cause my health to get worse, which would cause my stress to go up, and so forth.
I finally gave in and quit work in late 2015 because of the health challenges. My original plan was to take six months to a year off and then go back to work. In November 2016, my Hemoglobin A1c hit it’s high of 10.5%. At that point, the doctor decided I needed to add insulin to the medications I was taking. He also explained that the diabetes was causing the fibromyalgia and chronic fatigue to be worse, and vice versa.
Adding the insulin has helped but my A1c was still 8.9% in February 2017. In addition, I still have almost no energy. This means that I’m not getting nearly enough exercise, mainly because of the pain and fatigue. And to add insult to injury, the insulin is causing me to gain weight instead of losing it like I need to do. The silver lining is that my A1c was down to 7.8% in September 2017.
Life Adjustments with a Chronic Illness
Luckily, I have a great husband and two wonderful children. Everyone is pitching in and helping as much as they can.
I’m regularly fighting depression because I can’t seem to get control of anything. I’ve spent the last year and a half adjusting my habits, cleaning schedules, and generally everything so that I can feel like I’m back in control of my life.
I’m still exhausted pretty much all the time, even though I usually get 8-10 hours of sleep at night. I’ve started using the Sleep Cycle app. It has a great alarm that doesn’t “shock” you to wake as bad as most alarms. In addition, it has shown me when I’m not getting quality sleep. I haven’t figured out how to change that yet but the data is useful.
I’m doing light weight lifting every day and working on a habit of four 15 minute walks per day. I started with a daily ten-minute walk and was trying to work up to a one hour walk each day. I couldn’t ever get over 20-25 minutes without exhaustion and pain causing me to stop. The doctor told me that four 15 minute walks would have the same benefits as a single one hour walk. Now, I try to do four 15 minute walks each day.
I’m working hard on my diet, trying for high protein and low carb. I’m also trying to drink at least four 24 oz. bottles of water a day. At first, this was really hard but it has gotten to where it is a habit that’s easy to maintain.
I worked hard on planning routines that help me continue to work toward my goals without overwhelming me. By creating reasonable goals and doing consistent weekly and daily planning, I’m starting to feel like my life is in balance again. If you need to work on this area, check out Goal Setting with a Chronic Illness.
Finally, I started this blog so that I can have a place to discuss my accomplishments and failures. More importantly, I can share my journey with others who might be facing similar situations. The blog also gives me the opportunity to share the knowledge that I’ve accumulated over the years. I’ve found that using planning, organization, and simplification makes it easy to find balance in your life.
I don’t claim to be an expert on chronic illnesses and this blog will never take the place of a good medical team. I am becoming an expert on dealing with a chronic illness. My hope is that what I share will help you make adjustments that bring you closer to a life of balance.
What types of adjustments do you make to deal with your chronic illnesses? Let me know in the comments below or email me at firstname.lastname@example.org.
Other posts that might help you deal with your chronic illnesses:
In addition, check out Elaine Watkins site for wonderful resources in the categories of Healthy Living, Healthy Food, and Healthy Spirit. She also does health coaching if you want some additional help.