“Your sole mission is to articulate your suffering so that it emancipates you and empowers other women”
I wish I authored that quote. I didn’t. This quote is by Carole Radziwill from the #RHONY on the 5/11/16 episode . And for those of you who do not admit to occasionally watching Bravo, #RHONY = Real Housewives of New York. And by the way I would like to defend Ms Radziwill in case you are judging, she is no dummy. She had a career since the 80’s working for ABC News as a foreign correspondent and documentary producer, and since leaving ABC she has become a best-selling author with a positive outlook on life. She is my Real Housewife fashion girl crush.
It’s GBS (Guillain Barre Syndrome) Awareness month, a condition I have suffered from since 2009, so I feel I must speak on behalf of my GBS peers and those suffering from invisible illnesses. The early stages of GBS show obvious symptoms, but it’s later during recovery when the wheelchair or cane is put away those invisible symptoms still haunt all of us suffering: fatigue, numbness, mobility and balance issues, pain, tingling to name a few. These all fall under ‘well you look fine’ umbrella, but we are invisibly struggling.
Nov 2009 onset of Guillain Barre Syndrome; paralysis in legs, left side and right side of face. I was actually very scared here
That Zika virus is floating around and believe me, you do not want to get Guillain Barre Syndrome from it. GBS is terrifying, with rapid onset paralysis, a long recovery, and life-long residual symptoms. I had a stomach flu in the fall in 2009, then one day a couple weeks later I woke up not being able to feel my face, hands or feet. It got rapidly worse as I went to urgent care, then to the ER. I was in and out of the hospital for almost 2 months those early days. After leaving the hospital I received IV immuni-globin for 2 years; 5 hours for each infusion, once a week. It took me almost 6 months to be able to walk again, slowly with a cane. My eye was paralyzed open for 2 months, it was torture. I had to keep drops in it and wear a patch to keep it moist since I couldn’t blink. It was impossible to sleep. I couldn’t bathe, or walk myself to the bathroom. I was new to Madison, and had two visitors the entire time I was in the hospital. It was a lonely time in my apartment by myself after they released me from the hospital still barely able to walk. No one really understood and I didn’t have anyone really come to help me. I lost 25 pounds, all I ate were Popsicles, I had no appetite, nor could I eat out of the side of my mouth or chew. I was scared to go outside, people stared at me and got impatient with me moving slowly with my cane.
GBS is a rare condition affecting one in every 250,000 people. Your immune system goes into overdrive after some ‘event’. In my case it was a flu, for others it can be a surgery, or a flu vaccine. Your immune system attacks your own nervous system, attacking the myelin sheaths that cover your nerves acting like insulators on electrical wires. When these myelin sheaths are gone, your nerves misfire and cause tingling, numbness, and paralysis.
Breast Cancer came as an added bonus last year, and I am happy to report some of my symptoms are improving (pain, swelling). I was grateful for the outpouring of support when I was first diagnosed, but honestly, dealing with breast cancer was a whole lot easier than GBS. People understand breast cancer; it’s the C word, and it’s scary, but I can tell you for me it was much easier compared to GBS and the lifelong misery it has left me with.
I am writing this to speak on behalf everyone who is suffering from an Invisible Disease: RA, fibromyalgia, Lyme, MS, depression, arthritis, GBS, Chrohns, addiction, coeliac, lupus, hypertension, endometriosis etc. I am writing this to let you know, I understand, and I empathize, and if people reading this can learn a little more about what so many of us go through, then perhaps we can show more compassion for those suffering.
I’m disabled. Not in my own mind, but in the medical world I am classified as disabled with the license plates to prove it. I could not work at a traditional job, it would be impossible. I’ll never forget the look of horror on my Neurologists face when in 2012, still walking with a cane, I told him I was opening a boutique. While I am grateful for the friendships I made at Iona, I was stupid to open it, it took everything out of me. Currently I don’t have to work to pay my bills, but most GBS patients do not have that same luxury. They somehow have to work, or fight for disability benefits. Imagine trying to explain GBS to someone who has no clue what GBS is but has the power to decide if you will receive the financial support you need.
My neurologist told me: “It’s like you have a faulty electrical grid, that has to work overtime everyday. You’re basically running a marathon everyday with no recovery period.” The fatigue is often explained as my body constantly misfiring and working on rebuilding the myelin sheaths to cover my nerves.
You may have noticed I have not posted any fashion posts over the last 30 days as promised. The reason for that is because I cancelled 2 photoshoots. And the reason I did that is because I hate the way I look. I couldn’t fit into my new clothes and I was feeling terrible. I’ve sized myself out of the top sizing end of designer fashion, when I was a size 6 a year ago. While this may sound obnoxious, fashion is an important part of my life. I can’t pull my clothes on from bottom to top anymore and it is an everyday reminder of my struggle and how much I have changed. Not just physically, but mentally and emotionally as well. My cancer meds and nerve pain meds have contributed to my weight gain, but so has the compound effect of my cancer recovery with my GBS residual symptoms such as debilitating fatigue. This all has left me less active and also eating more for comfort.
This is what you would see on a ‘good’ day: normal complexion, hair washed, happy
When I am having ‘good’ days I feel like I can take on the world like my ‘old self’; exercise, walk, household chores, shopping, cooking, projects, catching up on correspondence, filling my calendar up with future appointments and social engagements, booking flights, doing & planning all of the wonderful things I am going to do and be a change agent. These days are ‘good’ days and to me they are blissful.
The next day or week after I feel awful and I have to cancel my hair appointment, my lunch with a friend for a second time, miss working out, have to lay in bed all day, maybe 4 days. I can’t feel my legs and I have extreme fatigue and migraines. These days are miserable and I’m miserable. I have theses days far more often than my bliss day of a ratio of probably 6:1 for any given week. The emotional roller coaster makes me frustrated and sad.
This is me 80% of the time; extreme fatigue, pale, doubt-fully washed hair, wearing sweats and in bed.
I have to book extra days within my travel schedule so I can front end recover and rest. I keep my calendar clear for at least 3 days when I return knowing I will need to recover. It is a huge accomplishment to get ready to go out anywhere. I prefer lunch to dinner dates, brunch to drinks, walks to events. I pick my poker tournaments to play with early start times.
I have an inconsistency with my responsiveness. On my good days I am all over it; responding to emails within the hour and texting back immediately. On my bad days I just want to sleep and recover so I turn most things off. People get annoyed or worried that I’m not responding, so I feel anxiety and guilt when I should be resting.
Many in my family don’t understand. I have lost friendships over this.
Most people don’t understand, including many of the Beverly Hills housewives. Lisa Rhinna, being one of them, needs to wake up. She has made many ignorant comments about Yolanda Hadid (another #RHOBH) and her Lyme disease suffering. Lisa has suggested she was faking it, that it made her angry, it frustrated her that Yolanda couldn’t attend social events etc etc. Like many others her lack of compassion and understanding leaves her unable to be empathetic. Unfortunately I’ve experienced this first hand having lost friends over last minute cancellations to social events. Yolanda Hadid writes a lovely, informed, compassionate, honest blog about her life with Lyme Disease. It is worth reading. I wish Lisa would.
Now you know why I watch so much #RHOBravo , because I am always in bed
Bravo TV Bed days are always better with a kitty snuggle
So what can we take away from this. I am hoping it can be another reminder to develop your own empathy. Help the person in the wheelchair, or the woman struggling with her groceries. Try not to be irritated with the person walking slowly or fumbling in their purse. Call or visit one of your friends who is going through a hard time or suffering from an invisible disease. Believe me it makes a big difference having love and support. Hold that person’s hand.
This post is for all of us, and what ‘we’ all go through in some version every day. I’ll keep working on emancipating myself and hopefully empowering others. Thanks Carole Radziwell for your words, thanks Yolanda Hadid for staying positive and pressing onward. Thank you supportive readers, & thank you my patient, loving husband. Let’s all keep working on taking care of each other. xo Pdub
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Pam, I have a couple of friends with silent illnesses..lyme, lupus and Sjogrens. I have sent this on to them as a reminder that they are heard.
Blessings sent you way.
Thank you Donna 🙂 Pamela
Thank you! I am from Biloxi, Ms and am 41/2 years from first diagnosis of GBS. I still have the fatigue and constant nerve pain. I too have put on weight because my Neurontin makes me want to eat everything! Now that I can walk again, it has become invisible just like the Fibromyalgia I have suffered with for years. You don’t know how much just reading your blog post has meant to me!
Hi Susan, thanks for taking the time to comment, and I am so delighted my post was able to help in some way. I’m in your corner, it’s a tough grind, and I understand. xo Pamela
Pamela thank you for writing such an interesting blog making awareness l for one did not understand your condition you are dealing with it so well as you know our thoughts and prayers are with you always take care! Nessie // Allan xx
Thanks Aunt Nessie & Uncle Allan. I love you 🙂 Pamela
Pamela: We met a few years ago. I used to serve on the Madison Rep Board with Monty and he connected with my husband over poker. I just wanted to reach out to tell you how much I admire you and your words that are absolutely encouragement to anyone dealing with a chronic illness. Rob was diagnosed with Rheumatoid Arthritis more than 15 years ago. Some days, he wakes up with just a little stiffness. Other days, he is swollen and in severe pain. I am often awestruck by his courage and his perseverance. I am equally amazed at how many people just don’t get it. It is so important to shine a light on autoimmune disorders. This is the only way that others will be able to understand the struggle, the challenges and the periodic successes. Take care of yourself. Perhaps the four of us can get together for drinks one of these days. All my best, Shana
Hi Shana thanks for reaching out, great to hear from you. Interesting the large number of email comments from people saying they are suffering from RA, and the terrible pain associated. Autoimmune disorders are so varied and complex its frustrating. My thoughts to Rob and yourself, I totally relate to not knowing what to expect on any given day. Then you have to adjust. We would love to get together , lets do it this summer for sure; Terrace, Genna’s. Cheers , long live Andy Cohen 🙂 , Pamela
And PS I am a Bravotv junkie. 🙂
Pamela, I too, am recovering from GBS. It was such a terrifying ordeal! I thought I was going to die! I was completely paralyzed and on a ventilator. I spent three weeks in the hospital and three weeks in a rehab facility. After I was discharged from the rehab, I had two and a half months of outpatient rehab. It has now been a year and a half and the fatigue has caused me to gain back the weight that I lost, and then some. You’re right, it is a silent illness after the initial hospitalization. I am one of the lucky ones! I no longer need a cane, but I do still have residual problems, such as feet pain, (tingling and burning), along with balance issues, etc. Thank you for bringing attention to GBS! I hope you continue to improve!
Hi Kathy, I understand those balance issues. I walk like a penguin so I don’t fall, and become traumatized at the uneven pavement at crosswalks 🙂 . Thanks for reaching out Kathy, I will keep pushing on GBS awareness. I hope you continue to improve too , Pamela
Pamela, thank you for this amazing piece. I was hoping we would continue our budding friendship this spring. I so enjoyed the two get-togethers we had and was looking forward to hearing back from you when I emailed about scheduling our next. Now I think I know why I haven’t heard yet. Please tell me if there is something I can do. I would gladly pick up some goodies and bring them to your place if that is something you would like to do. Patty
Hi Kathy, I understand those balance issues. I walk like a penguin so I don’t fall, and become traumatized at the uneven pavement at crosswalks 🙂 . Thanks for reaching out Kathy, I will keep pushing on GBS awareness. I hope you continue to improve too , Pamela
Hi Patty, yes tough spring here. Not a lot of good days unfortunately. I would love to reconnect again though, lets chat offline and set another date? Pamela
Dear Pamela, Thank you for such insight into your fears and feelings making it something we can understand and support. It helps to know what you need and maybe what we can all do for you. I so wish you didn’t have to go through this. Rest, get better soon, Sweet Lady.
Thanks for the kind words and reaching out Jacqui, 🙂 I hope you are doing well, Pamela
Dear Pamela: thank you for sharing your story. You remain in my prayers.
Thank you Mary Claire, I hope you are well, xo Pamela
Thanks for sharing this, Pam. Very informative. We should all appreciate our good health if we are lucky to have it. I suffer from migraines, and I used to think that was awful. I can’t imagine I’d be able to handle all you’ve had put on your plate. Thank God you have a wonderful support system. I read the Zika virus was associated with GBS and it’s terrifying. I hope your good days start outnumbering your bad ones.
Hi Natalie, migraines are no walk in the park. Talk about a hard shut down of a day or 2. I definitely have learned to love my good days when I have them. Today was one 🙂 Hope you are doing well, xo Pamela
Thinking of You Pamela <3 <3 <3
xoxox to you Tanya , Pamela