In this edition of the Patient Voice, Mae Beth writes about facing the trifecta of Fibromyalgia, ME/CFS, and breast cancer in her life. When Dr. Bateman, who recently battled breast cancer as well, encouraged Mae Beth to share her story she was inspired to write her story and share it here. In the face of unrelenting attacks on her health, Mae Beth found a light at the end of the tunnel, focused on what she had to be thankful for, and discovered that through it all she is stronger than she ever felt possible.
Finding Strength & Hope Navigating ME/CFS, Fibromyalgia & Breast Cancer
Yes they’re fake, my real ones tried to kill me. ..
Up until 5 years ago I had a pretty great life; a loving family, good job, lots of friends, and for the most part pretty good health. Then in 2010 I came down with a nasty virus that I just couldn’t seem to shake. It went on for months and no matter what I did I just couldn’t seem to get rid of it. After a long dose of antibiotics I finally started to feel a little bit better but I would still get fatigued and flu-like with very little activity. I was hoping with a little time it would go away, but it didn’t.
I spent a good part of that next year taking tests, seeing doctors, all the while pushing myself harder and harder to get better and always getting the same answers…”We can’t find anything wrong with you.” When I literally felt like I was going to collapse I went on medical leave from my job and I never went back. My primary care doctor at the time, who was very supportive and truly worried about my declining health, seemed convinced of my suspicions but was still hesitant to say the words ‘Chronic Fatigue Syndrome’. I did get my rheumatologist to admit I “might have a little fibromyalgia,” something I’d known since the early 90s. I now fondly call him Capitan Obvious.
I was desperate to find answers so I scoured the web daily to find anyone or anything to help me. I remember it like it was yesterday. Slumped in the all too familiar exam room waiting for my doctor, I was already tearing up when she came in. I told her I was at the end of my rope, couldn’t take it anymore and had found a clinic that I was going to for help. Skeptically she practically yelled, “OMG where are you going? There are a lot of places out there that can do you more harm than good.”
I told her I was going to see a Dr. Bateman and that next minute changed my life forever. I was waiting for a lecture to come spilling forth, when instead she said “I am soooo okay with that. Lucinda is a fantastic doctor!” So, after a time on the waiting list, I was off to BHC. My suspicions were confirmed and I started my journey with ME/CFS.
The first three years after my diagnosis I limped along, having good days and bad, even thinking on occasion that I was going to recover but that didn’t happen. I was still able to go places, see friends and keep my house in order as long as I paced myself and didn’t over do things. I also learned if I ignored “The Beast” or tried to outmaneuver it I would pay a heavy price. In February 2015 after 3 months of extra stress, activity, and not paying attention to my body I crashed. I crashed so hard that for 3 days I could not even lift my head from my pillow. My body felt like it was shutting down. The fatigue and pain was so crushing I thought I was on deaths door, so much so I was unwilling to go to the hospital and prayed my husband did not wake up to my cold body.
Slowly I began to have enough strength to get out of bed for an hour or so every day. With careful planning and a lot of help from my awesome husband I began to pull myself up and begin again where I left off. I was 2 months behind on everything including my annual mammogram, so the first day I felt strong enough I made an appointment went. I hadn’t given it a second thought because I’ve had so many of them over the years but 2 days later I got the call I needed to come back in for more screening. With my family history I had a pretty good idea what that meant.
Even though you expect to one day hear the words “you have breast cancer,” it still stings a little when heard out loud. My mother lost her battle with breast cancer 20 years ago and in anticipation of having that diagnosis myself I had already decided what I would do if I had to follow a similar path. I felt confident and strong the next few weeks learning about my type of cancer, what tests I needed, what options I had etc. Then the fear and anxiety set in. Not because I had cancer but because I had ME/CFS.
How was I going to survive a 4 hour major surgery, months of tissue expander fills, (I was able to choose immediate reconstruction) and another 2 hour reconstructive surgery 4 months down the road? I couldn’t clean my own house, make most of my own meals or on some days even take a shower and my biggest fear of all, what if the surgery sent me back to bed…FOREVER?
The last year of my illness had taken such a toll on our lives. My sweet husband had already sacrificed so much taking care of me, how could I utter my dark thoughts to him? How could I tell him I was afraid our plans of moving to a new city and buying our dream house might be over? How could I tell him that I believed with my whole heart that I was going to be bedridden? How could I tell the person who had been so strong for me that he was now going to have to do more? Once again my best friend and love of my life reminded me that we were a team and no matter how difficult things get we always get through it.
With that, it was time to make a plan. My most trusted physician gave me the information I needed to help get through the surgery and once I was reassured by the rest of my doctors that they would take every precaution not to exasperate my chronic condition we set a surgery date.
Now it was time to tell family and friends. This was not as easy as I thought it would be. Some of them cried, some told me to be brave or strong and others offered to help. In a bittersweet way I found great comfort in the friends that had all but disappeared over the years were now filtering back in to my life and ready to support me. I did find myself angry in some moments, wondering why most of them felt this was any different than the last five years of my suffering. I had to remind myself that almost everyone knows someone who has had, or has died from cancer and most of them have not even heard of ME/CFS outside of the occasional posting by me on Facebook that they probably surfed right past. (Maybe we should start using kitten videos for awareness!) I reminded myself it’s a controversial and complex disease and that most people don’t have the time or interest to educate themselves. That it was not because they didn’t care it was because they didn’t have the knowledge.
With that resolve I was happy again; happy to have so many people send me love, well wishes and volunteer to help. I’ve always had very long hair and I knew I wouldn’t be able to take care of it so off it came. My stylist was able to donate my locks to Wigs for Kids which made me very happy and I now love having short hair. The cold winter months were upon us so we made healthy soups, stews, and freezer-to-oven meals to get us through at least 2 months. We finished up last minute house cleaning and prepared the recovery suite, complete with recliner, blankets, service trays, books and movies. Now I was as ready as I could be for the big day. Astonishingly enough, I slept quite well that night.
I’m guessing the surgery went fine since I got to say all of 2 &1/2 words before the anesthesiologist put me out and I never saw him again. I did wake up in excruciating pain but it was only a few minutes and the pain was managed. Once I was comfortable I was wheeled to my hospital room to spend the next two days. The next 48 hours were particularly difficult. The fatigue took over immediately. Convincing the nurses that I could not simply get up and walk the halls was a bit challenging. I’m also extremely intolerant to many medications, including Percocet, which one nurse in particular kept pushing. She insisted I try it because I would need to have something to manage my pain at home. Boy was she sorry! Two hours into the medication I freaked out. I was so agitated and sick I probably looked like Linda Blair in the Exorcist! After that episode there was a lot of eye rolling and a deep sighing here and there, but I had an amazing surgeon who set them straight. All in all it was a pretty awful stay and I couldn’t wait to get out of there so I could go home and get some rest.
Once I was home I was much happier. I couldn’t get in and out of bed by myself so the recliner would have to do. It was actually quite comfortable and the dog and cat fit safely in my lap. I had not been able to shower for the last three days so with the help of my husband we managed to get my hair washed and a bath. Now it was time to start the healing.
I spent a considerable amount of time preparing myself and my husband for the aftermath, knowing all too well that the physical and emotional scarring was going to be unimaginable. The first week at home everything seemed to go surprisingly well. The pain was minimal and I was looking forward to having the surgical drains removed so I could take a real shower. I was so happy I hadn’t crashed from my ordeal and my fears of being bedridden were starting to diminish. I was secretly congratulating myself for being so strong, not cringing every time I saw my newly disfigured torso and not feeling at all depressed.
Then, out of nowhere and for no particular reason it hit me like a ton of bricks. I began to sob and within seconds I was inconsolable. Anger, sadness, shock, denial, waves of emotion came crashing over me. I could see the worry in my husbands eyes as he allowed me to break down. The grief was so strong I was hyperventilating and could not catch my breath. When I was able to stop crying I realized I had just come to terms with had transpired over the last few months and it was time to find some balance again. Having visitors and talking on the phone was physically exhausting but I found emotionally it was very satisfying. I carefully planned my social time, mixed it with quiet time and everyday I felt stronger.
It’s been 3 months since that terrifying day when I had 6 pounds of tissue removed from my body. There have been many days filled with relentless pain, fatigue and anxiety but there have been some good days too. I’m not totally bed ridden, my surgeons seem happy and my tests results are all looking good. Even though it takes me all week to recover I’ve managed to make most of my weekly doctors appointments and I’m now preparing for my last surgery. I’m doing my best to control that dreadful fear that once had so much control over me; I will not let it consume me again. I know I still have a long road ahead but now there is some light peeking in at the end of the tunnel.
I’m thankful for my wonderful husband who has been so patient with me and somehow keeps it together in the most trying of moments. I’m thankful for Dr Lucinda Bateman who has been cheering me on all the while fighting her own battle. I’m thankful for the friends and family who still call and check in to see how I’m doing. I’m thankful for my little dog Izzie who hasn’t left my side. I’m thankful for my awesome plastic surgeon who always puts my illness first. Lastly, I’m thankful for being stronger than I ever felt possible.