Tag: Fibromyalgia

A Chronic Illness | Not To Do List

On By Windy J Cumberbatch, CPC1 Comment

For someone living with chronic illness it’s important for us to be thoughtful of the things we do everyday so we don’t over exert ourselves. That means being mindful of the things we CAN do and the things we CAN’T do. This can be hard for someone who is used to being independent, like me, but in order to practice self care we need to pay attention to our bodies and let it take the lead on what we can do safely and with the assistance of others if needed.

Windy’s Not To Do List

  • Do not say “Yes” to things your body is telling you to say “No” to
  • Do not blame yourself for being unable to do certain things. It’s not your fault!
  • Do not speak negatively about yourself (You are not your illness)
  • Do not pretend to be ok when you’re not ok (It’s ok to not be ok)
  • Do not isolate yourself (We all need community)
  • Do not overthink things (That can lead to unnecessary stress)
  • Do not ignore your symptoms (Listening to your body is very important)

Having a chronic illness can be hard at times, I mean most days for me it’s very hard as I don’t feel like getting out of bed. For the most part having a chronic illness means that we will need to make some adjustments in our daily routines as well as depending on others to help from time to time. Listening to our bodies, saying no to the things you need to say no to and giving yourself some grace can make all the difference.

If you are someone who lives with chronic illness, what are things you’ve learned to say “No” to? How did that make you feel? How did those around you adjust? I’d love to hear from you. Please feel free to make a comment below or shoot me an email at info@windysjourney.com.

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! 

We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

And if not, He is still good!  Daniel 3:18

Follow me on social media:

IG: @windysjourney

FB: @windysjourney

T: @windysjourney

Chronic Illness & My Love Of Fashion

On By Windy J Cumberbatch, CPC4 Comments

This is a topic that I’ve struggled with for quite some time now. You see while I have been living with Fibromyalgia and Chronic Lyme Disease (to name a couple), I also have a great love for ALL things fashion. So what’s the big deal? Well, I’m so glad you asked.

HOW I SHOW UP VS. HOW OTHERS SHOW UP

My issue with this is in the way I show up. Most people you come across who live with some type of chronic illness may show up in lounge wear, no makeup and a comfy pair of socks. To be honest, that’s me whenever I’m at home resting. However, when it’s time to leave the house for a doctor appointment, church or one of my kids sporting events it’s hard for me to leave the house without putting forth some effort to look…good. For someone who has loved fashion for as long as I have and who has worked in the fashion industry for as long as I have, it’s hard to toss that part of me aside, even while struggling with my health.

Each day when I wake up, I thank God for another day then I lie in bed for at least an hour or more in order to a get sense of how my day will go…how I’m feeling and what I can and cannot do. Once I get my morning started I take a look at our family calendar and see if there are any appointments for the day that I need to attend. Once that’s all figured out I then think about what I am going to wear. It’s just a habit, and it’s the truth. It has been ingrained in me to care about my outward appearance when leaving the house from the time I was a young girl in North Texas. Sometimes I wonder what others think about me when I show up somewhat pulled together, I wonder if they think I’m not really sick because of my outward appearance. There’s this internal tug of war going on…do I wear makeup to cover all of the redness and swelling in my face? Should I wear my favorite jeans and graphic t-shirt along with my comfy shoes that just happens to be a luxury brand? What will people think? Do I dress down to make others ok with my condition while at the same time suppressing who I am and who God created me to be? Heck no! (You know I wanted to say something else right there)! Lol!

It has taken some time for me to get comfortable in this space. In the past I have felt bad (for lack of a better word) for pulling myself together when heading out of the house. I now know that this was all FEAR and INSECURITY! Thanks to a dear friend of mine who pointed this out to me in a loving way. She encouraged me to be myself and not concern myself with the thoughts of others. Not to be mean, but not to give any weight to the way others see me. What God says about me is what matters most and that’s what I will continue to draw courage and strength.

The Bible says in Jeremiah 1:5 ” I knew you before I formed you in your mother’s womb. Before you were born I set you apart”…I love this verse because it gives me freedom to be me knowing that I am walking in who God has created me to be! I believe that God is using me and my love of fashion while in the midst of my health journey to be a living testimony that God can use the sick to minister HOPE to everyone I come in contact with. There may be someone that feels they would not be welcome in the house of God because they love luxury items and love to wear name brands. Everyone has a place in God’s family. We all deserve the space to be ALL that we created to be. If you love fashion you are who God says you are. Hold your head up high, carry that Gucci bag and get your praise on! I have to add…everything in moderation.

Here is a picture of me taken a few years ago. I love this look! I love the everything about it. I felt confident and strong, but what you can’t see is the intense pain my body is in. After this picture was taken, I went home to rest and ended up being in a Fibromyalgia flare up for over a week. But you know what? Even with that God is still good just as it says in Daniel 3:18!

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! 

We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

And if not, He is still good!  Daniel 3:18

Follow Windy on social media:

IG: @windysjourney

FB: @windysjourney

T: @windysjourney

P: @windysjourney

The Power Of Intention Setting & Chronic Illness

On By Windy J Cumberbatch, CPCLeave a comment

Over the past several years, I’ve learned the hard way that it’s important to be intentional about the things I choose to do. It’s important to me to spend time with my family and my amazing friends, but oftentimes I don’t feel good and I’m not able to do as much as I would like to. I spend a lot of time at home alone while my husband is working and my daughter is in school. During the day I am usually in bed or on the couch resting, online doing some research about my illnesses so I can be a better advocate or spending time writing blog posts such as this. It usually takes a while to finish a post due to my illness. I have to take my time because my thoughts don’t come as easy nor as quickly as they used to so I write a little bit at a time until the blog post is complete.

WHAT DOES BEING INTENTIONAL LOOK LIKE?

Well I’m glad you asked! Lol! These are some of the things I put in place that helps me be intentional:

  • Resting: If I have advanced notice that I need to go somewhere like a doctor appointment, I will rest at home for at least 2 days leading up to the appointment do I have enough energy to make the car ride and the waiting in the lobby. Each of these things take a lot to time and energy so I have to be planful.
  • Communication: It is important that I communicate with my family why I am resting. I also ask for help when I need it which is sometimes hard for me. Communicate my needs during this time of rest. Be open and transparent and everything will be ok.
  • Keep It Simple: I try not to overcomplicate things. Communicate my intentions, share the why and move on.
  • Be Realistic: When attempting to be intentional, it’s important that I am realistic in what I want to accomplish.
  • Pray: Ahead of leaving the house for any reason I pray and ask the Lord for strength to do what it is I need/want to do.
  • Say No: It is important to me when being intentional about the things I want or need to do that I say to things that may pull on my energy. If I continue to say “Yes” to things I don’t need to do or own I won’t have anything left for myself. This might be hard for others to understand, but it’s ok. Think self-care!

DISAPPOINTMENT

I have to be honest and say intention setting is not easy for me always…there is some disappointment at times. Staying home getting rest can be isolating and saying “No” can lead to disappointment of others as well as myself. There have been times when I’ve had to say “No” to things that I really want to do but it was best that I didn’t try to push myself because I knew I had something else on my calendar coming up that I needed to conserve my energy for.

I also feel like I am letting others down when I say “No”. It can be emotional for me because I begin to think about all the things I can longer do, at least I can’t do them spontaneously like I used to. It can also be emotional for family members and friends who care about me. Everyone wants to make sure I’m ok physically, spiritually and emotionally. As hard as it can be, intention setting allows me to be the best version of myself so I can show up well. I read recently something that Sara Weand wrote that I love: “Intentions provide you with the opportunity to actively participate in your life the way you want to live it.” I could not agree more!

In conclusion, as I make an effort become great at intention setting, I’d love to hear from you if you have some things that have helped you in this area. Please feel free to drop me a line in the comments below or send an email to info@windysjourney.com, I’d love to hear from you!

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! 

We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

And if not, He is still good!  Daniel 3:18

Follow me on social media:

IG: @windysjourney

FB: @windysjourney

T: @windysjourney

My Life Before Chronic Illness

On By Windy J Cumberbatch, CPC2 Comments

Lately I’ve been thinking a lot about my life before I was diagnosed with a chronic illness. I spend a good amount of time alone which has afforded me time to reflect over the last 20 years. I often wonder what my life would be like had I not gone to the doctor all those years ago in an effort to get to the root cause for being so sick and for so long. I mean, what if I would have ignored the debilitating symptoms and kept on pushing…where would my life be now?

WHAT DO I MISS THE MOST?

A few months ago someone asked me what aspect(s) of my life from before do I miss the most? Honestly I had not taken the time to consider that prior to getting this question, but I’ve had some time to think about and here’s what I’ve come up with:

  • Having a job
  • Freedom to come and go as I please
  • Going for walks in our neighborhood
  • Having energy to shop all day (Ha! I bet my husband doesn’t miss this)
  • Doing random fun things with my teenage daughter
  • Singing on the worship team at my church
  • Everyday tasks around the house

While this is a short list, there are numerous everyday things that I may have taken for granted that I am unable to do with ease anymore. These days simple tasks like sweeping the floor will wipe me out for several hours. I have to plan things out so I have enough energy. Things like going to the doctor, physical therapy & massage therapy all have to be planned out. Planning for me simply put means getting lots of rest the days leading up to any appointment. I will stay in bed and do absolutely nothing so I can make it. Not only that, I now have my husband take me to and from appointments due to my chronic illness. In the past, it would be nothing for me to hop in the car to head to an appointment, now everything is coordinated with my husband’s availability. My how things have changed!

I STILL HAVE HOPE

Although my life is not where it once was and I am unable to do certain things, I still have hope. Hope that no matter the challenge, no matter how I’m feeling, no matter what, God still has my back. My faith in God is what has gotten through some of the darkest moments in my life, when I felt I couldn’t take one more thing. God is not at all surprised by my illness, he knew I would become ill before I was formed in my mother’s womb. He has been here every step of the way guiding me, providing for me and my family and showing me fresh grace and new mercy. Great Is Thy Faithfulness!

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families.

Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

And if not, He is still good! Daniel 3:18

Follow me on social media:

IG: @windysjourney

FB: @windysjourney

T: @windysjourney

The Cold Makes My Fibromyalgia Worse

On By Windy J Cumberbatch, CPCLeave a comment

I have been living with Fibromyalgia for over 20 years now and I must say I never look forward to the winter months here in Texas. Around the month of February is when we start to see more traditional winter temperatures, that’s the time of year my body dreads the most. As the temps start to drop my body begins feeling the cold in my bones which makes the already intense fibromyalgia pain worse. Once I get cold it’s hard for me to warm up. The aches and pains in my entire body run deep.

Day after day my body tenses up due to the cold which causes a fibromyalgia flare up. This is likely because of the numerous sensory nerves in the circulatory system. It’s hard for me to relax because I can’t regulate my body temperature. I mean my skin even hurts if you can imagine that. When I get cold my nerves become agitated which causes the nerves to act improperly, thus causing increased pain.

No matter who you talk to, those of us who have Fibromyalgia seem to have this in common, we hate the impact cold temperatures have on our bodies. I belong to several chronic illness groups and it never seems to fail that when we get into the winter months you start to notice more and more posts where people are in increased pain due to the cold weather.

Pain Management

What helps with managing the increased pain levels for Fibromyalgia sufferers during the winter months? Here are a few things that help me:

◦ Hot bubble baths (As hot as I can stand it)

◦ Heating blanket

◦ Fluffy socks

◦ Wearing lots of layers

◦ Eating more hot foods

◦ Weighted blanket

◦ Sipping on hot water with lemon or hot tea

◦ Turning up the thermostat (This can be a balancing act with other family members in the house)

◦ Keep a sweater in every room of the house as well as in the car

I have read about instances in which a family will move to a warm weather climate to get away from the cold temperatures, however I do recognize this is not a simple solution that many can make.

Here’s a recent picture of me in the backseat of our car (driven by my amazing husband) in so much pain due to the really cold temperature. You can almost see the pain in my face and the many layers of clothing I am wearing to try and get warm.

One note of caution…you will want to be careful when trying to get warm, you don’t want to warm up too fast as this can also cause a flare up of symptoms and increase pain for getting too hot too fast. It’s a balancing act for sure and you will want to ease into any routine until you find what works best for you and your body. Remember everyone is different and what works for me may or may not work for you! Please be careful!!!

Thank you so much for stopping by. Please be sure to like and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find “Windy’s Journey” podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify!

We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage & Inspire others who are on this journey with me.

XO- Windy

And if not, He is still good! Daniel 3:18

Follow me on social media:

IG: @windysjourney

FB: @windysjourney

T: @windysjourney

I Have A Full-Time Job & It’s Called Chronic Illness

On By Windy J Cumberbatch, CPC9 Comments

Having a chronic illness such as Fibromyalgia and Chronic Lyme Disease can be challenging and debilitating to say the least. Many of us are unable to work traditional jobs due to the intense pain, extreme fatigue, brain fog, memory loss and more. However managing our illness should be classified as a full time job.

You see I have been living with chronic illness for 20 years this year! Unfortunately, I have been unable to work since 2017 due to my chronic condition. Every single day is such a challenge that it actually feels like I’m working a 9 to 5. I say that because there are so many moving parts from 1) finding the right doctor, 2) to getting the proper diagnosis (in a timely manner), 3) to treatment (which can be a ton of trial and error), 4) everything in between and 5) the impact to your mental health. I thought it might be helpful if I broke down each step of the above mentioned process to help drive the point home.

  1. Finding The Right Doctor:
    • Depending on your illness, finding the best doctor can be take anywhere from a week to a few months. For me, I was sick for over 11 years, going from doctor to doctor, treating the symptoms before meeting someone who could point me to an amazing doctor that I ended up working with. Whew…11 years is a long time. When I think about all the hours spent on the phone with various doctors offices, then in the car driving to and from the appointments, sitting in the waiting area then finally taken back to be seen by the doctor, I realize all the time that went into it.
  2. Getting The Proper Diagnosis:
    • Now that you have found the right doctor it’s time to figure out what’s going on with your body. This can take some time. This may consist of lab work, MRI/CT Scans, XRays, Ultrasounds, Stress Tests, etc. There’s a lot of back and forth in this step as the doctor gets your results back from one test and schedules the next one until a diagnosis has been determined.
  3. Treatment:
    • This step in the process may be ongoing, again, depending on your illness. Now that the doctor has landed on a diagnosis treatment can begin. At first he/she may start you on the most obvious plan of action (tried and true) that has worked on others with your same diagnosis. However, because everyone is different your body may not respond in the same way and adjustments may need to be made. That’s where the fun begins (I’m being funny here)! If you’re like me, this step has not been fun especially when you consider how many medication changes I’ve had over the years. I get it, your body starts to become immune to treatments if you’ve been on it for a long period time. I just hate all the times (and there have been many) where I’ve paid my co-pay for a 60 or 90 day supply of a particular prescription only to have it changed halfway through! Can I just tell you that does not sit well with me at all.
  4. Everything In Between:
    • I put this here because there are tons of information on the internet that addresses just about every single illness out there. Supplements, exercise programs, diets and so much more. You will want to do your research to see which one might work best. The issue for me is the fact that there is so much information and can be both time consuming and overwhelming. I try not to get in the weeds too much and I pick and choose what I am willing to put my energy into to avoid all the rabbit holes that I’ve already been down. Whew…
  5. The Impact To Your Mental Health:
    • Throughout this entire process, you may begin to notice the impact all of this is having on your mental health. Specifically after being turned away by a doctor who does not agree to take on your case, or after all of the tests that come back negative and you have to keep going back to the drawing board until a diagnosis can be made, or when others don’t believe you’re sick at all because you don’t “look” sick. All of this (and more) can leave you feeling depressed, isolated and anxious. This rings very true for me. Over the years I have battled anxiety and mild depression as all of this can really wear you down mentally. I mean it’s a lot to deal with. I can’t imagine those who are going through this alone (there are millions that do) I don’t think I could handle it. This too can take time to navigate and may very well be ongoing.

NEW NORMAL

Living with chronic illness oftentimes means there will be changes to your normal daily routine. Things will look different from the way they once were. The biggest change for me was accepting the fact that I could no longer work. That’s a big one and I would say it had the biggest impact to my mental health. Moving from corporate America to now managing my health was the most drastic change. Spending most if not all of my time managing ever changing symptoms, the countless trips to and from doctor visits, and spending a ton of time alone. I have spent many hours grieving the life I used to live and doing my best to accept the life I have now. I am doing what I can to help increase awareness and educate others about Fibromyalgia and Chronic Lyme Disease which is where this blog and my podcast come in. Not only do I advocate for myself, I advocate for everyone who lives with chronic illness. It is my life’s purpose to take what this illness has thrown at me and turn it into good. That too takes time!

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

And if not, He is still good! Daniel 3:18

Follow me on social media:

IG: @windysjourney

FB: @windysjourney

T: @windysjourney

The Truth About Chronic Illness

On By Windy J Cumberbatch, CPC2 Comments

I have been on this chronic illness journey for nearly 20 years, and while that may be a long time, I am learning new things every single day. I am a member of several support groups on Facebook…the stories I get to hear would shock you. Here are a few things I’ve learned so far that on one hand makes me sad and on the other hand makes me want to do more to increase awareness:

◦ There is a high rate of divorce (Some spouses can’t handle everything that comes with having a spouse who is always sick…they give up)

◦ Many have to choose between paying their co-pays for much needed medication and food or mortgage (That’s a shame)

◦ Many are not believed by their family and/or close friends when they say they are sick

◦ Far too many are made fun of

◦ There is a high rate of mental health issues such as depression and anxiety

◦ There is a stigma attached to having a chronic illness, especially if your illness is invisible

◦ Some suffer verbal and/or physical abuse

◦ Far too many give up and resort to suicide (The numbers are staggering)

◦ Most are too sick to work and are dependent upon social security disability for income

◦ Many are misdiagnosed with many diseases before the correct diagnosis is finally made

◦ Many suffer in silence and not receiving the proper treatment

◦ Many illnesses are invisible which can lead to resentment and frustration from others (Believe us)

I could go on and on about the things some are dealing with in addition to fighting for their health. It hurts my soul to know that some are choosing to end their lives because they are so tired of the pain, the neglect, abuse, feeling like you are a burden to family and friends.

Personally, I suffer from mild depression and anxiety. At times I miss the life I used to have…being able to do what I want, go where I want…those days are long gone. I spend a lot of time explaining my illnesses to some who really want to help but they just don’t know how. While some say they had no idea how sick I am because of my outward appearance. The only thing I can say to that is you never know what a person is going through on the inside…mentally, physically and emotionally. Check on your “strong” friends who are sick but always tell you they’re ok. It could be they’re just telling you that because they don’t want to be a burden to you. When you ask how they are doing be sure to say something like “No, how are you really doing”. Hopefully that will get them to open up and share with you how they are really feeling and how you might be able to support them.

The truth is, living with a chronic illness is ugly, painful, hard, lonely, exhausting, stressful, and isolating at times. We are doing the best we can to make it through each day, but it takes a village to make it through our journey.

Thank you so much for stopping by. Please be sure to like and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts and Spotify! We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage & Inspire others who are on this journey with me.

XO- Windy

https://podcasts.apple.com/us/podcast/windys-journey/id1584718516

May Is Lyme Disease Awareness Month!

On By Windy J Cumberbatch, CPC1 Comment

As we kick off the month of May, I thought it befitting to write a post that is dedicated to Lyme Disease as it is the start of Lyme Disease Awareness Month. In this post I will share some basic information about Lyme Disease as so many still know very little about this chronic yet debilitating disease. Did you know that it is estimated that roughly 30,000 new cases of Lyme Disease are reported each year? That is a very low estimate, as it is thought to be more than double that number but many cases each year go undiagnosed or misdiagnosed as another illness or disease.

So what is Lyme Disease exactly? To be honest it can be hard to explain. In it’s most basic terms, Lyme Disease is an infectious disease caused by a species of bacteria belonging to the Borrelia family. Borrelia burgdorferi sensu stricto is the main cause of Lyme Disease in North America. The disease is named after the towns of Lyme and Old Lyme, Connecticut where a number of cases were identified in 1975. Although it was known that Lyme Disease was a tick-borne disease as far back as 1978, the cause of the disease remained a mystery until 1981 when B burgdorferi was identified by Willy Burgforfer.

Lyme Disease is the most common tick-borne disease in North America and is transmitted to humans by the bite of an infected tick belonging to a few species of genus lxodes (hard ticks) Early symptoms may include fever, headache and fatigue. A bullseyes rash occurs in 70-80% of infected persons at the site of the tick bite after a delay of about 3-30 days. The rash is only rarely painful or itchy, although it may be warm to touch. Approximately 20-30% of infected persons do not experience a rash. Left untreated, later symptoms may involve the joints, heart and central nervous system. In most cases, the infection and it symptoms are eliminated by antibiotics, especially if the illness is treated early (within the first 30 days of being infected). Delayed or inadequate treatment can lead to more serious symptoms which can lead to disabling and difficult to treat. The term ”Chronic Lyme Disease” is controversial and not recognized in the medical literature and most medical authorities advise against long-term antibiotic treatment for chronic lyme disease.

More work needs to be done in order to bring about more awareness. I must admit before I got sick and diagnosed with Chronic Lyme Disease, I had no idea what it was other than it being something that I knew pets could contract. I worry that if more education is not provided more and more people will be misdiagnosed and will suffer because of it. That is why our family started the Windy J Cumberbatch Foundation, to help provide more education and awareness in an effort to help others and Empower | Encourage | Inspire those living with Lyme Disease and other chronic illness such as Fibromyalgia.

Please visit our website at windyjcumberbatch.org for more information. We welcome your tax deductible donation that allows us to provide transportation to and from doctor visits and assist with co-pays. You can also follow us on social media: Facebook- @windy j cumberbatch foundation and IG: WJC Foundation, Podcast: Windy’s Journey on Apple Podcast, Google Podcasts or wherever you stream.

Thank you for stopping by!

-Windy

2021: My Year In Review

On By Windy J Cumberbatch, CPCLeave a comment

I can’t believe 2021 is just about over. It seems like just yesterday we were ringing in the new year from our homes, tucked away due to the COVID-19 pandemic. I wanted to recap how my year went as I look forward to 2022. I must admit, due to my illness memory loss makes a bit challenging to recall a lot of things that I encountered, so I will just touch on the things I can recall.

If I’m honest, this year has been full of anxiety and a little fear as I have tried by best to protect myself and my family from the COVID-19 virus. It has been hard because some of the symptoms I face on a daily basis tend to mirror many of the COVID symptoms. I wear my mask faithfully, wash my hands often and sanitize my hands more than I care to admit. Can you relate? Wondering if I remembered to wash my hands after touching a public space, do I have enough hand sanitizer, oh and what about the person in the drive thru that was not wearing a mask, was that ok? So many emotions, so much stress and way too many things to think about each and every day! I often wonder if I am being a little paranoid, but with my current physical condition my body would not be able to handle anything additional. Most days are spent at home on the couch or lying in the bed trying to rest and allow my body to heal itself one day at a time.

As I continue to navigate the COVID-19 pandemic and all of it recent variants, all I know to do is pray that God will protect me, my family and friends. I try to seek his guidance on what I should, how to listen to his voice and most importantly remember his promise to keep me and to never leave me. That does not mean I don’t get scared because I do, but when that fear creeps in I give that fear to God and exchange that fear for his truth that only he can provide. I wish I could say it’s easy, it’s not. It’s a fight everyday and I have to choose each day to trust that God will see me and my family through.

I look forward to the day where we no longer have to worry about COVID-19. It’s been over 2 years since I’ve seen my dad, brother (and his family), and my grandmother. I have family and friends that I’d love to go see, but I want to do my part to keep them safe, especially those who have a compromised immune system like me. We will get there, until that time I will continue to do my part to protect myself, make educated decisions for my health and continue to trust that God is in control.

Thank you for stopping by and don’t forget to check out my new podcast, “Windy’s Journey“, now streaming on Apple Podcasts, Spotify, Google Podcasts or wherever you stream. Also check out our foundation, Windy J Cumberbatch Foundation, where our goal is to Empower | Encourage | Inspire those living with chronic illness. The main way we help others is by providing transportation to and from doctor visits to those who need it. All donations are tax deductible! We could not do what we do without your support.

Thank you for your support and cheers to 2022!

XO,

Windy

Lyme Disease vs. Chronic Lyme Disease

On By Windy J Cumberbatch, CPCLeave a comment

It took me a while to write this post. There’s so much I want to share with you, but I’m afraid it would become overwhelming and I would lose you. The battle between Lyme Disease and Chronic Lyme Disease is probably not widely known across the country, primarily because Lyme Disease itself is not well known. I am going to do my best to try to share my what I know as it relates to the controversy surrounding this illness.

To start us off, I want to remind you that Lyme Disease is caused by a bacteria called “Borrelia” and it is most commonly found in deer ticks. Once you are infected with Lyme via a tick bite by an infected deer, it can take anywhere between 3-30 days before you noticed any symptoms. Once you noticed symptoms or you noticed a tick embedded in your skin it’s important that you see a doctor right away. At this point, you will be tested for Lyme Disease and if your test comes back positive you will be prescribed a round of antibiotics (most likely Doxycycline) for about 30 days. At this point the antibiotics will do it’s work and you should be ok. However, if you are bit by an infected deer tick and you don’t get treated within the first 30 days it can be hard to diagnose. The longer you go without being diagnosed, the harder it will be. This is where the controversy comes in.

Some doctors do not believe that an illness that goes untreated for long periods of time, such as Lyme Disease, could turn chronic. Some doctors believe that 30 days of antibiotics will do the trick and cure you. That is not the case with Lyme Disease. If you are infected and go untreated, the Lyme bacteria begins to take up residency in your body. The bacteria spirochetes begin to travel throughout your entire body and eventually every area of your body will become infected. Areas such as: (List not conclusive)

  • Central Nervous System
  • Brain
  • Respiratory System
  • Heart
  • Eyes
  • Dental
  • Muscles
  • Reproductive System

Once the Lyme bacteria invades the various areas within your body and the longer you go untreated, your symptoms begin to worsen and the illness turns Chronic, as it did in my case. Once this happens, the illness can be hard to detect, primarily because the current tests are not specific or sensitive enough to detect Chronic Lyme that has been invading your body for weeks if not months. The main reason for this failure to accurately test for Lyme is the fact that there are more than 1 strain of Lyme. The traditional tests that most doctors use will only test for 1, which means you could get a false negative. In order to be properly diagnosed you will need to be seen by a specialist who knows about Chronic Lyme and has access to the proper test. When the disease isn’t caught in time, it can spread throughout the body and cause chronic health problems that could otherwise be avoided with earlier detection and treatment.

The short story is, if you are bit by an infected deer tick and become sick, please see a doctor immediately and be test for Lyme Disease. Some of the early symptoms of Lyme Disease are:

  • a rash that looks like a red oval or bull’s-eye anywhere on your body.
  • fatigue
  • joint pain and swelling
  • muscle aches
  • headache
  • fever
  • swollen lymph nodes
  • sleep disturbances

Please note that only 70-80% of people infected with Lyme will develop the bulls eye rash, which means that 20-30% will NOT develop one. That means, if you notice symptoms and don’t see the rash you should still see a doctor and get tested. If you dismiss the symptoms as something else like the flu and don’t get tested and seek treatment, the bacteria will infect your entire body and turn to Chronic Lyme and become more challenging to treat. Symptoms will increase and become intense over time, again making it harder to treat. At this point you will need to see seen by a doctor who knows about Chronic Lyme Disease who can determine the best path and begin treatment. The longer you’ve gone untreated the longer it will take to see improvement. In some cases, Chronic Lyme Disease can become debilitating and cause disability.

More work needs to be done, more education, better testing, and increased awareness in order for people such as myself who have been suffering for years, to get the treatment we deserve. For more information, please visit my foundation’s website Windy J Cumberbatch Foundation. To learn more about more story, please check out my podcast “Windy’s Journey” now streaming on Apple Podcasts, Spotify, Google Podcasts & more!

Thank your stopping by and thank you so much for your support!

XO,

Windy

Loneliness & Chronic Illness

On By Windy J Cumberbatch, CPCLeave a comment

I have been living with Fibromyalgia and Chronic Lyme Disease for almost 2 decades. Wow! I don’t think I’ve ever said it like that before. Let me try it again…for almost 20 years, a little less than half of my life, I’ve been sick! As you can imagine, with prolonged sickness comes frustration and if I’m honest, loneliness creeps in at times.

You see, while my husband is working and the kids are in school, I spend my day at home alone. Outside of the chats with my girlfriends and catching up with family, I’m usually home in bed or on the couch pondering what to do next. To be transparent, what I’m really pondering is what CAN I do today? You see most days I am not feeling well enough to do the things I used to do or really desire to due to the various symptoms I navigate on a daily basis. I wake up each morning not really knowing what to expect or how I am going to feel. How I long for the days when I could get up and do whatever I wanted to do that day. Insert loneliness.

I think what’s really taking place is I am grieving the way my life used to be and a good friend of mine helped me realize that I would never get that life back, nor should I strive to. You see, the old Windy didn’t know she was sick and was living a life that could not continue. The old Windy had not stepped into what God had for her in order to stretch her into what God is calling her to become. Whew…that’s hard to hear at times but it’s true. If I were to go back to the way things were in the past, I would be far from who I am called to be. Even though it’s hard most days and even though I am lonely at times, I would not trade it for anything if it means getting closer to who I am created to be.

So what do I do to all day? Well I’m glad you asked!

  • I take lots of naps! (Naps are the best and much needed to allow my body to heal itself)
  • Eat (Way too much)
  • Read my Bible (Food for the soul)
  • Pray (Talk to God about all the things)
  • Nap some more (Ha!)
  • Think about ways to help others (Giveback)
  • Laugh at myself (When I’m not crying. Laughter is good medicine)
  • Check on my family and friends (I love you all)
  • Doctors appointments (I love my doctors too)
  • Repeat
  • Oh, I’m sure I take another nap!!!!

It can be lonely living with chronic illness and I am so thankful for the people in my life (You know who you are)who help me keep my spirits up and push through and never give up. This too shall pass.

Thanks for all of your support. It means everything to me. Please be sure to check out my new podcast, “Windy’s Journey” which is now streaming on Apple Podcasts, Spotify and Google Podcasts.

Until next time, XO

Windy

In Sickness & In Health

On By Windy J Cumberbatch, CPC2 Comments

A few months ago, I changed things up a bit and shared my daughter Chanel’s thoughts on living with a parent who suffers from a chronic illness.  Now I want to allow my husband Carl the opportunity to share his experience.  Carl has stuck by me and has been my rock through this journey and I think it might be helpful for others to hear things from his perspective.  I’m sure when we were married, neither one of us could have ever imagined walking through this journey called Lyme Disease! #insicknessandinhealth

So here’s Carl in his own words, I pray you find this helpful.

Q: Carl, what has been your experience living with someone who has a chronic illness?

A: My experience has been challenging and overwhelming, at times. This may sound crazy, but I’m so glad God chose me for the task. In my eyes, it has made me a better person and definitely allowed me to have a better relationship with Him.

Q: What has been the most challenging?

A: I say this in the most kind and forward way I know how to. Please hear my heart and not read this answer as me complaining. One of the most challenging things I tend to navigate through is not knowing who or what I’m waking up or coming home to. Some days I may come home to a wife that is full of energy and ready to conquer the world and other days is one where she needs to be nursed/taken care of, because she is having an episode of excruciating pain that will not allow her to move.

Q: What would you say to other spouses or family members living with someone who has a chronic illness to encourage them?

A: Not just learn, but become as close as possible to an expert about the illness (the more you learn, the more you will be able to understand and help your spouse/family/partner to navigate through it). Join some type of support group, if not a group then a person that you are able to vent to (or talk you off the ledge). Finally don’t give up! For every reason you can think about leaving, I can give you ten for staying.

Q: How do you stay positive?

A:First and foremost  GOD. Staying in the word of God is key to overcome all obstacles life presents. I have lived long enough to know today is Windy that is ill, but tomorrow that could be me. I try to live everyday (to be transparent some days I fail) loving and caring for Windy, the way I would like to be cared for, if it was me suffering from an illness. I know there will be times that I must wear a shield not just to protect and guard my feelings, but also to protect others from my flesh. 

Q: Is there anything else you want others to know?

A: This is not a sprint, it’s a marathon. Be mindful that depending on the illness it might take years to overcome it (if it has a cure). Extend lots of grace and empathy to your spouse/partner. Pace yourself and don’t walk this out alone!

Thank you for stopping by!  Please be sure to subscribe by adding your email address in the “Follow” section and be the first to know when I’ve added a new post. (I promise not to spam you).  Please follow us on social media by clicking the link in the right column of this post.

IMG-3720

My favorite picture of us!

Thanks for your support!

XO, Windy

Good Day-Bad Day-New Day!

On By Windy J Cumberbatch, CPC12 Comments

I recently celebrated my 48th birthday and spent some time reflecting on the past few years.  All the challenges I have faced and the impact chronic illness has had on my life. Fast forward to 2020, I realize with everything going on with COVID-19/Coronavirus, that my emotions have fluctuated from good to bad in a matter of a few minutes.  It’s easy to become fearful of the unknown as we all try our best to get used to our new normal. To navigate the reality of the changes in our daily routine and to wonder what each new day will bring. I must admit that I try to limit the amount of news I take in each day as it can be quite overwhelming.  I put my hope and trust in God, knowing he is in control.

When thinking about my journey, what do my Good Days look like?  These are the days when my symptoms seem to be in check and I am able to navigate through the day with minimal issues.  Some days I feel so good, I forget I’m sick.  I am able to do a little more than the previous day.  I am able to be present in family interactions, chat a little longer on the phone without losing my train of thought (short term memory loss) and do more around the house without feeling like I’m about to pass out.  I look forward to these days, where I feel a little more like myself.  While it may not look the way I want it to look, I am still very grateful.

Then there those days when I am reminded of how my symptoms continue to ebb and flow with new treatment and medications. Insert Bad Day: At times it is easy for me to get caught up in my emotions and feel sorry for myself and become bitter about being sick, really sick and for a long time. The flare ups, the brain fog and fatigue can feel like a lot to handle at times.  Some might think it’s ok for me to feel frustrated given all I deal with on a daily basis, but it’s important for me to stay the course and stay focused on the promises of God.  To remember that in this life there will be challenges, but joy WILL come in the morning.

Lastly, I look forward to each New Day and all that it has to offer.  Each day is a fresh start, a new opportunity to experience God’s love, to encourage others and to get one step closer to living out God’s purpose for my life.  I know this illness is my testimony to others about the goodness of God.  Throughout my entire journey He has been with me, provided for me and my family and protected me.  “I know the plans I have for you” Jeremiah 29:11 reminds me and I believe this too shall pass.  My hope is that by sharing my journey with chronic illness, others are Empowered | Encouraged | Inspired to never give up no matter what you are facing.  I continue to pray for others who are facing challenges knowing that we will get through this together!  

XO & Be Safe,

Windy

Be thankful for where you are now and keep fighting and working for what you want to be tomorrow

 

 

 

 

You’re Tougher Than You Think

On By Windy J Cumberbatch, CPC1 Comment

Walking through this chronic illness journey has really caused me to reflect on all the things that have transpired, especially the past 2 years which have been really rough for me physically and emotionally.  It would be easy for me to get upset and become bitter for the loss of my former self.  To wallow in self pity, feeling like the world is against me.  I’m sure many of you would say I have every right to feel betrayed somehow, but you know what…I’m learning that I’m a lot tougher than I thought.

I have been living with Chronic Lyme, Chronic Fatigue and Fibromyalgia since 2003 (maybe a little longer for the Fibromyalgia) and it has not been easy.  Each day brings with new symptoms, lots of pain and fatigue.  I wake up each day not really knowing how I’m going to feel or what I may or may not be able to do that day.  The hardest thing for me so far is not being able to work.  I deal with a lot of cognitive issues, short term memory loss and brain fog.  I can’t control the things I can remember and it’s very frustrating.  I try to write things down so I don’t forget, but that sometimes poses a challenge when I can’t remember where I put the note.  Some things that have I have been doing for years are easier for me to accomplish, but even those things start to become challenging for me.  I thank God that those who love me and those I do life with extend lots of grace and are very patient with me, which is a huge relief.  I will admit at times it does cause a disagreement with my husband or family member when they tell me something I said or did and I can’t remember.  In my mind, if I can’t remember it, it didn’t happen.  Slowly, I’m learning to say, “You might be right, but I don’t remember that”.  That helps keep the arguments to a minimum, but at times I have stood my ground and that’s no fun!!!!  As hard as it is, I am learning that it’s ok to forget and it’s ok to say “I’m sorry”.  (My husband will love that I said that).  Ha!

When I was growing up, my mother would always say “To whom much is given, much is required” and I truly believe that with all my heart.  God has been so good to me and my family over the years.  He’s given me “much” therefore, “much” is required of me.  Yeah, being sick sucks at times but guess what…this too shall pass and I’m learning with each passing day that I’m tougher than I thought!

Until next time,

WJC