November 20th, 2010
I’m coming late to the party. It’s 3 days after the official Love Beats Hate event and I haven’t even managed to read very many of the posts – I’m working on it. But I figure keeping the love alive is not a bad thing to do. And I want to be part of the party.
What can I say? Perhaps nothing that hasn’t been said before. I love you bloggers and online health activists and I am honored to be among you. I was a busy person living my life when illness tackled me and brought me down. Life threatening allergies. Chronic Migraines. Crippling fatigue, which resulted many years later in a diagnosis of Fibromyalgia. Irritable bowel syndrome, with weeks of enervating stomach pain. On the hate side, I can truly say that I hate being sick.
I can feel very very sorry for myself. Even making this list brings a tear to my eye. But it’s not just the illnesses. It’s the years I spent fighting, not accepting, pushing myself way beyond my limits, thinking of myself as lazy and undisciplined, longing for the day when it would be all better. I neglected the people I love with my head in the clouds trying to build a different reality than the one I live in, trying to force the outcomes into a shape I wanted. I never paid enough attention to where I was, to my home, my children, my work. I thought that if I kept pushing, somehow I could make it all better. I regret those years. I listened to those who think that illness is a result of wrong thinking, that we can transform our way out of illness. I will not say that there is an evil intention in this type of thinking, but it led in my life to evil results. I felt guilty for my illnesses. I hated my illnesses, and myself for having them. I tried to ignore them and push past them. Until I was too sick to do it any more. And I finally found some doctors and therapists who could help. I recommitted myself to meditation and conscious relaxation, acceptance and love, and learned little by little to accept the highly sensitive, aching weary frame that I live in.
Three years ago I started participating in the online Migraine community, and then the larger chronic illness community. I had something to share, to offer, with the relaxation techniques I had learned, and the coaching skills I used professionally. I decided to create this thing called Migraine management coaching, and to go talk to others with my illness. I won’t say I haven’t had a contribution – I think and hope that I have. But what looked at first like a side benefit – the outstanding relationships I was forming with others who understood my life – turned quickly into the main event.
The darkest days of chronic Migraine, among the sickest times in my life, were lightened by the time I spent on My Migraine Connection, and blogging, and reading and commenting on others’ blogs. I became a part of a community, a loving, supportive, funny, vibrant community. I got such deep and caring help with some of my hardest struggles.
Then I discovered Facebook and a surprising thing happened – my chronic illness community and my other communities – family, friends, colleagues from the many parts of my life, all began to come together. When I post about pain or illness, many will comment who understand and are with me in the experiences, but the others in my life will also express sympathy, distress, let me know they are with me too, though they may not have my same issues. It has been enormously healing. I want to say I am sorry to all those I love, and who love me, who I neglected, or pushed away, or tried to force into seeing things in a particular way. I was running away from myself. It wasn’t until illness brought me to a standstill, until there were no more reserves of energy to keep pushing, that I became able to accept, and out of accepting, express, and explain, and have you get what my world is like.
After three years of working at it my Migraine disease has moved from chronic to episodic and I have long stretches of freedom from pain in the brain. I am back working full time, or close to it, at law and mediation. I wish that I could just help chronically ill people full time, but I had to get back to earning a living. I am exhausted by my work and can’t seem to think much at the end of a long day. My fibromyalgia and irritable bowel are activated much more often than they used to be by the stress and exertion of my life. So I don’t spend nearly as much time on this blog, or on forums or other blogs, as I used to. I miss it. I wish I could do more. But I do check in with my friends, on their blogs, on Facebook, on Twitter, and I am present every day to how I get by with a little help from my friends. I am lifted up and cradled by you. I love you.
April 13th, 2009
We had a nice four day trip over the weekend to visit friends in Boston. A wonderful family who lived in our town for two and a half years. They were our around the corner neighbors, and our fourteen year-old sons are best friends. They are warm and easy to be with. It’s a six hour drive each way. We were actually in Boston from about 7 pm Thursday until 1 pm Sunday.
It’s ridiculous how hard it is to plan for and face a simple weekend trip like that. I needed medication refills and discovered various mistakes that had been made in the prescription that involved multiple phone calls and trips to the pharmacy. I recently increased my Topamax dosage and I am experiencing once again the mental cloudiness I have had at each new dosage level – making it hard for me to stay focused on a task or remember what I need to do next in a sequence of tasks. This is beginning to lift, but it’s not gone yet.
Of course I had to pack all my meds, for preventing Migraine, in case of migraine attack, all my supplements, my thyroid meds. My husband and son had meds to pack. My eighteen year-old daughter was staying behind to work and dog-sit, but we had to be sure she had food and instructions. My husband and I are both at rather crucial points in business and there were things that had to be finished before we could hit the road. Our accountant called just before we were leaving with additional details needed for our taxes.
I get pretty stressed with highway driving, especially on high travel weekends like this one, especially in the high-speed, high-pressure, road-rage rampant, “I’m more important than you are and I own the road” Northeast (where I live). That kind of stress goes right into my neck muscles and can lead to headaches and Migraines. We passed a couple of horrendous accidents on the way there.
I left without the spare pillows I usually bring – due to several injuries I sleep propped up so that I don’t ache so much I can’t sleep. I found myself a bit embarassed by my inability to find words and complete sentences in the morning and evening when my meds were strongest. And Saturday afternoon I passed on a trip to the Aquarium with the families, and lay down with a Zomig, a book, and eventually a nap, to get rid of a Migraine.
AND – you’ve listened to my litany of complaints, here’s my conclusion: I had a great time. It was so nice to get away. It was so lovely to spend time with friends. It was worth the stress of driving. So what if I had a Migraine – chances were way better than even I would have had one at home anyway, without the visit. So what if I stumbled over words a little – entertaining though I may be, my conversation is not the only point of the visit (shocker, I know!). We came back renewed and refreshed. Tired after our travel, yes, but it was so very worth it.
We don’t get out much. It’s hard to make plans when Migraine and other illness often comes along and changes them. Money has been tight. My house is not as clean and neat as I’d like it to be, so I don’t ask people over much. But it’s so important to be with people. Every little bit helps. True friends don’t love us for how perfect our housekeeping is or our speech is or any of that.
Open door image courtesy of emdot/marya.
March 6th, 2008
Does Migraine negatively impact friendships? You’d think so, wouldn’t you? I’ve certainly changed more plans due to Migraine than anything else. On the other hand, life, getting married, being an adult, being out of school, having a job, and having a family, can all impact friendships. Add Migraine or other chronic illness to that list, and it’s the icing on the cake.
I must say all my friends seem to be quite understanding of my need to cancel plans, or the long gaps when I’m not in touch. They are concerned and loving when I share with them about my struggles with Migraine. I think,though, that I’ve already gotten them trained not to expect too much from me! The best I can say about that is that none of them are all that great at being in touch either! Which at least takes the edge off my guilt feelings.
My best time for friendships was the last two years of high school and the four years of college. Law school wasn’t half bad either. And my first few years of work, before getting married. I was in a fun and stimulating environment, with a lot of people my age, sharing a common experience. The first inkling of
change came when I fell in love, and my friend Kathe said, “We won’t be seeing much of you for a while.” I vowed it would not be so, but sure enough – if you’re spending lots of wonderful delicious time with one person, you can’t spend as much of it with your friends. 24 hours in a day, right? (Here’s me and Kathe in college.)
And then the pressures of a career close in. And if you have kids – forget the next 10 years at least! Then you leave the city where everyone was a subway ride away and you move to where you have to drive to get anywhere, where everyone’s more spread out, everyone has oodles of plans with their own
kids, and the people nearby aren’t always the ones you’d most want to hang out with.
But this was supposed to be about Migraine. My migraines increased steadily at the same time these other life pressures increased. Life threw some more things my way – the terminal illnesses and deaths of my in-laws, the long recovery from grief in my own household, my sinus problems, severe allergies, career changes for Danny and me both. There have always been dear friends who I can call and cry to, or laugh with. Sometimes I wonder how they could stand my repeated tales of woe. As my migraines increased, time spent with friends decreased.
I just don’t see my friends, or talk to them, enough. I miss them. I’ve been missing them for over 20 years. And I know Migraine has made it harder – much harder, for me to make new friends. On one famous occasion Danny and I had an outdoor brunch at a trendy place with a couple we really liked – and I managed not to puke in the gutter until we were crossing the street back to their apartment. We never socialized with them again! Coincidence?
Year before last one of my best friends from High School, Laura, was ordained as an Episcopal deacon. I flew out to Chicago for her ordination, meeting up with two more of our closest High School friends. I endured long flight delays due to thunder storms, a noisy hotel, and lack of sleep. Had a wonderful day
at the ceremony and party with Laura and her family, and David and Vick. My migraine didn’t hit until I was out to dinner with David and Vick, head down on the table, unable to eat any of the expensive gourmet food I had just ordered. They took me back to my hotel and took care of me. They were angels. But it was not how I had wanted to spend the time with them! (The picture is from Laura’s ordination party – me & my High School buds, 29 years after graduation!)
Life is hard enough on our relationships. We don’t need Migraine on top of it all, making it harder. I just try to keep sharing, keep calling, keep trying to make plans. And when I do talk to my friends, I feel so much better.
- Megan Oltman
Friends do make life worth living!
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