I’m writing this first post lying down. I’ve got my tools: a laptop that allows me to keep working, an ice pack that eases the back spasms and antibiotics to treat the urinary tract infection (UTI) that seems to happen with a bad back. Did I need this reminder of my invisible and sometimes disabling symptoms? Last week Jake and I were in New York City for work and to visit our daughters. I went knowing it would be a balancing act of work (looming deadlines and client appointments) and play with the girls. The first day, I thought I’d carefully mapped my trip, trying to avoid getting too tired, and started with a visit to our daughter, EmmaRose, at her internship in a clothing design company, 7th Avenue and 39th Street. Feeling tired, I stocked up on green tea, my favorite stimulant. But not a good idea with a weak bladder. Next stop, the school where our daughter, Lucy, is in her first year with Teach for America in Spanish Harlem (East 101st St). I’d planned to get a cab but it was brutally cold and it’s impossible to get a cab when it’s cold in NYC, so I walked for miles. Get the picture? My bladder, which leaks all the time at best, floods when I’m physically tired. My feet, always hurting when I walk long distances, were dragging and it felt like there were knives in my toes. There I was, visiting the school that my daughter teaches in, with wet pants. (Too bad it wasn’t a preschool or a senior center -I’d have fit right in) Good thing I was wearing black jeans and a coat!
My back and my bladder seem to be woven together (I’m told they’re on the same nerve) so one when goes, the other does too. The next day, sure enough, I wrenched my lower back, shlepping my laptop to various places because I had work to do. I know – I need a new, lighter laptop.
As the week went on, my symptoms got worse but the deadlines were still there. Are you asking: Why don’t I stop and take a break, at least on the projects where the only time pressure is the one I set for myself? By most logic that makes sense – – slow it down when your body isn’t doing well. Listen to what your body is saying and all that. But here’s the thing. I listen and my body tells me to pay enough attention to treat the symptoms and keep going. If things get worse, don’t freak out, just do what you have to do to feel better. Over the past 30 years with multiple sclerosis, ulcerative colitis, Sjogren’s Syndrome and a very weak back, if I stop the train every time something isn’t right, this train would never leave the station. When I was a healthier person (30 years ago) and I got a cold, I went to bed. Now, it takes a fever and sometimes more. Because I want to. Keep Working, Girlfriend!
Lisa says
As many of us who will read your blog can understand…We get it because we live it. There seems to be a battle we undertake as women to do it all regardless of our health issues. Invisible disabilities have unique challenges and it is strange to say that many of us would prefer if the world could see why we are not able to be ‘like everyone else’. But those of us who tackle the work place, our families, our disease and our own needs understand that the world will not stop because we are having a bad day…so we better figure out a way to balance it all!
My training started early, age 12 diagnosed with a heart disease that had already killed 2 in my family, hypertrophic cardiomyopathy, HCM. The symptoms have always been there – shortness of breath, chest pain, palpitations, dizziness, passing out and then the fun stuff like the stroke, pacemaker and defibrillator. My sister worked until the day she died of HCM in 1995 – during the last few weeks of her life she said “I think my job is killing me”, she was kidding and I said, “no if anything gets you it will be your heart”, at the age of 36 it was her heart. I am now 38, I have lived longer than my sister ever got the chance to and I have learned a great deal I wish I could tell her now. Balance work, family and your health. Know when to say NO, know when to pace yourself and know when to ask for help. Life has deep meaning and many of us have great skills to share with the world, never let your condition hold you back from your dreams…just adjust your sails and let it carry you.
hang in there girls…
Best of luck with the Blog I am sure it will help many people!!
Sherril Johnson says
Impressive all around. Great “Resources” list. Thank you!
patty says
This is a wonderful connection for people; it will be a comfort and and inspiration. Great job!
Jenni Prokopy, ChronicBabe.com says
rosalind, joan – love the new blog! this is going to be a valuable resource for so many women – working while managing multiple chronic illnesses (heck, even ONE illness) is so challenging. i’m looking forward to reading your tips and sharing this resource with my readers. there are not enough people writing on this topic. hope you can also get some guest experts to chime in on any research, legislation, insurance and other issues as appropriate. this is a great start! cheers –
Miriam says
I have multiple invisibile disabilities. They have gotten so bad that they blur the line between visible and invisible disabilities. That said I want to keep working. I love working. My worst nightmare (since I was 5 years old) is being trapped in one place doing nothing all day. Too bad one of my disabilities triggers full body paralysis.
I have learned to balance my career and disabilities, but I constantly have a tough time dealing with other people’s inability to accommodate someone with disabilities. As long as I am the one making all the accommodations, then they can “handle” me being disabled. However, simple things like accessible doors after years of my requesting them is beyond most people’s comprehension.
Rosalind says
Miriam, Invisible, visible – it is all difficult because whatever it is, it gets in our way. In case you don’t know this already, accessible doors are an ADA issue – just depends on how much of a fuss you want to make. Keep at it, though. Just remember you’re doing it for you.
Diana says
As I read your stories, I am heartened and feel so much less alone. My disability is pancreatitis; I have had chronic severe pain for the past 14 months and other issues dating back over two years. I want very much to be stronger. But what is coming through loud and clear here is “balance”, and perhaps I have to think more about this in the context of my own life. Thank you!!