Fibromyalgia, Lyme disease, chronic fatigue syndrome, bipolar disorder and dementia: “Be honest with yourself and your loved ones!”

Hello Melinda, thank you for agreeing to talk to Carenity. 

First of all, could you tell us more about yourself?

I’m a lively woman going on 60 years old who has been married to her sweetheart for 20 years. I love my blog, photography, helping others, advocating for my causes like mental health and chronic illnesses. And I can’t forget my two dogs. 

You have several illnesses. Could you tell us which ones? When were you diagnosed with each of them? What were the first signs of each?

I have fibromyalgia, Lyme disease, chronic fatigue syndrome, bipolar disorder and dementia.  

Lyme disease was very difficult to diagnose, it took me 1.5 years which is quick compared to many. It caused my fibromyalgia, chronic fatigue syndrome and dementia. This was 2015. 

As for my mental illness, I was diagnosed at 19 years old.

What is life like with fibromyalgia, Lyme disease, chronic fatigue syndrome, bipolar disorder and dementia? Do you receive comprehensive care, or do you see several specialists? How do you feel about your current management? What are your treatments?

Life can be a total challenge some days and not so bad others. One thing I believe in is self-care. This extra hour or so a day helps me get in touch with my body, to nourish it, unwind and help my body regenerate. I see several specialists and have a varied treatment plan. The treatment plan that can change the most is for my mental illness.

According to you or to the doctors, is there a link between your conditions?

Lyme disease was caused my fibromyalgia, chronic fatigue syndrome and dementia. The rest have not been linked.

On a daily basis, which condition requires the most follow-up or is the most disabling? Why?

My mental illness requires the most attention because I must be aware of my moods throughout the day, take medication several times a day and keep my doctor informed if having a problem with medication.

Do you have a family history of any of your conditions?

I have a family history of dementia, but it was caused by a stroke.

Do you feel supported by your family and friends? Do they understand your daily life with the disease?

Yes! The key to that is taking my husband or another person with me to my critical appointments. That way I have two sets of ears, someone to take notes, who can mention a symptom I may have forgotten or help me clarify what the doctor is saying.

What is the impact of your conditions on your private and professional life? What misconceptions do you frequently hear about your so-called "invisible" diseases?

I don’t really hear anything about invisible illness, but my lifestyle doesn’t allow me to interact with many people. Personally, the biggest toll has been on my freedom and the intimacy with my husband.

Shortly after, you decided to launch your blog “Looking for the Light”. Why did you make this choice? What messages do you want to convey to your readers?

The mission of the blog was to share my story, advocate for my causes and hopefully help a few along the way. The key message I have for everyone is to keep moving forward.

What are your plans for the future?

Continue on as I’m already retired, work and family caused me to leave my career early.

Finally, what advice would you give to Carenity members who, like you, are affected themselves or have a loved one affected by one or many invisible chronic illnesses?

The key is understanding, if you care about the person, do your homework, learn about the illness. Don’t judge when they have to bow out or cancel plans. And if it’s a partner I highly recommend including them in your doctors' appointments. This has helped me so much.

There’s no trying to repeat or ask questions about what the doctor said because they are right there and since they are hearing from the doctor’s mouth, you don’t have to tell them.

Any last words?

Be honest with yourself and your loved ones! There will be those that don’t listen, that’s their problem. Communicate how you’re doing without the complaining tone. If you’re struggling either physically or mentally you need to reach out. Both can cause depression.