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.
October 23rd, 2010
My CPU is messing up its P. My wires are crossed, frayed and fragmented. The volume knob on my pain processors is broken and they don’t make the replacement part. There’s a bug in my programming that no one knows how to debug. I am exquisitely sensitive. I want to know what’s so freakin exquisite about it?
I spent the afternoon in the courthouse on Thursday. That’s always been a stressful event for me, and in years past it used to steal my sleep the night before, have me so riled up I could barely think clearly, and inevitably led to a Migraine after. This time was not so bad. I really knew my stuff, I slept well, though not quite enough, I was only a little nervous. I spent the entire afternoon negotiating and wound up with a better than expected settlement for my client. It was still rather stressful and quite strenuous for me, though. I was too busy at work to get a break before I had to leave for court. The street I usually turn down was blocked off for construction. I parked 4 blocks from the courthouse and then got a little lost on foot, hauling my heavy file in a stiff wind. I was worried that my plenty-of-extra-time was turning into actually being late. I had to deal with heavy opposition and guilt-tripping at times from my adversary, and a major upset at unexpected details from my client. We were racing to get our agreement done before the courthouse closed. When I left I practically ran to my parking garage to avoid a ticket. All in all a very tiring day.
The good news is that my Migraines are well enough controlled that all that did not trigger one. I was close this morning but my cup of tea and morning supplements seemed to head it off. But by the time I got to my car on Thursday my arms were so sore and heavy I could barely hold them up on the steering wheel. I went home, had dinner, and my gut immediately began to cramp, leading into a two day irritable bowel attack. And throughout the day on Thursday and Friday, my hands were trembling constantly. When I got up on Friday my whole body felt like very sore and achy concrete. I told my husband I had great sympathy with concrete; I know how sore it must feel. He told me, “Yes but concrete doesn’t try to move around!”
I am one of those Migraineurs with a lot of related “co-morbid” neurological conditions. Migraine is a condition of an over-sensitized nervous system, with mis-firing of certain neurons in response to certain stimuli. Fibromyalgia is like the sound has been turned up on pain receptors so that pain and tiredness amplify and continue in the muscles with long-lasting pain, it is also a condition of over-sensitive, over-active nervous system. Irritable bowel syndrome is thought to be the result of overactive nerves in the intestinal tract, and causes me days and even weeks of cramps, stomachache, heartburn and constipation. I also have a benign familial tremor – benign because it’s not Parkinsonian, familial because it’s hereditary. (my Dad has it but his didn’t appear until his 60′s – lucky precocious little me!) I don’t know much about the science of the tremor but I notice it is strongest when I am tired and stressed. Oh and for years I have had anxiety, severe at times, though that is being well controlled now by one of the Migraine preventives.
I want to be de-bugged, that’s all I can tell you. The past few days have felt like one of those cartoons where the robot starts to explode, spinning wildly, blowing sparks out of its top and sending bolts flying. The things that are wrong with me – they are not just painful, debilitating, annoying, disruptive, and gross, they are also just plain weird. I never know what’s going to blow next. Well, actually I do have some idea, but it’s awfully hard to manage it all. I am sick and tired of being exquisitely sensitive. I can tell you, there’s nothing exquisite about it.
March 5th, 2009
I woke up feeling well, and well rested, before my alarm went off this morning. That may not sound like a big deal, but it is very unusual for me, and worth commenting on. I went to bed last night with a Migraine that hadn’t fully resolved, and with a queasy stomach, which I thought was nausea from the Migraine. The head pain was completely gone this morning but now in early afternoon my stomach has gone back to feeling a bit queasy, so I am wondering in retrospect whether the stomach gripe yesterday was Migraine nausea or IBS or whatever else this may be that I am feeling today. Having multiple chronic illnesses is like that. Most of the time I’m grateful if nothing really major is going on. It’s rare that some degree of minor ick isn’t happening, and it’s also rare that I can sort it all out and say definitively what is bothering me on a given day.
I felt so well that I set my Facebook status this morning to say “Megan Oltman is feeling really well for the first time in weeks.” Within a few hours I found myself musing on what exactly “feeling really well” is, whether it’s a moving target, and whether it’s a claim I can make. I’m not feeling as well as I was when I got up this morning. On the other hand, I don’t have a Migraine, my stomach is only a little queasy with no major pain or cramping, I don’t feel fatigued, I am mentally clear, I am not congested, I am fairly energetic – this is a good day! I might even color it pink!
I have a Wellness calendar which I color code to indicate how well I am on a given day. This allows me to keep statistics and track trends. I calculate how many Migraines per month I have, how severe, how long they last, what triggers them and what I do to treat them. I calculate how many days I am sick but functioning, how many days semi-functioning, and how many completely out of action. Each type of day has a color. Days I feel great I am “in the pink.” Then I calculate percentages of wellness and illness for a given month, for two and four months trends, for a year. Yesterday I caught my statistics up and discovered that 2008 was my worst year for wellness since I started tracking. Not that I couldn’t have told you that by gut feel, too, but it’s a rude awakening to see it in black and white and pink and orange and brown… I really think I deserved a pink day after that.
A dear friend, who lives far away, and who I don’t talk to nearly often enough, read some of my writing recently and told me she was surprised to hear me describe myself as having been chronically ill for the past 14 years. She thought I must be uncomfortable talking about it, or why had I never told her? Laura’s a perceptive one, and of course it has been uncomfortable to talk about, especially in the first 8 or so of those years where I was trying to figure out what was wrong with me, blaming myself, thinking I was a hypochondriac, all the things that so many of us do. Now I think it’s not so much discomfort as just a long story to catch people up on. That’s part of what I try to do here. I am chronically ill. I have chronic Migraine disease, chronice fatigue syndrome, irritable bowel syndrome, multiple allergies, and chronic, or at least frequently recurrent, sinus infections. The good news is that I am actually up and functioning about 75% of the time!
February was a bad month. I was sick 14 out of 28 days, and that doesn’t even count days I was okay all day but was knocked out with a Migraine in the evening. Today I got out for a walk. I am clawing my way back to the top of the mess in the house and on my desk, and feeling caught up with my work again. The sun is shining, the snow is melting, and I feel well. Pink? At least pinkish!
November 4th, 2008
I have to admit to a new illness – not a chronic one this time, but acute. I have election fever. I fear I
will be good for nothing until the election results are in tonight, and that will be late. Tomorrow I will be exhausted and probably have a Migraine from lack of sleep. I could hardly sleep last night, and my dreams were full of voting booths and speeches, polls and impassioned arguments. Yesterday I had a teary conversation with my parents about how they raised me, about the values of inclusiveness and democracy, remembering the assassinations of Dr. Martin Luther King Jr. and Robert Kennedy in my childhood, my parents’ deep despair at those events and how they explained the world to me around them, and how this election feels like a fulfillment of what my parents have stood for their entire lives. Who else out there is as worked up as I am right now?
I already anticipated that I would not sleep much tonight; I didn’t expect that I would have such trouble sleeping last night. I didn’t expect that my irritable bowel syndrome would flare up, as it did overnight and is today. It’s a good thing I live in a very small town because a long line at the polls would not work for me today! I plan to spend a few hours volunteering today, helping others get to the polls, providing rides if needed, as long as my body allows me.
As a coach, as a chronic illness coach I should probably be advising you, and myself, to relax, to get rest today, to go to sleep tonight and find out the election results in the morning. I don’t think I would be capable of taking that advice. We are human, and we must concede our humanity. My Migraine Connection posted their poll of the week today – “Do You plan to vote regardless of a Migraine?“. Of around 120 responses so far, 94% said yes, they plan to vote regardless of a Migraine. That’s how important this election is to us. The outcome here matters to all of us, wherever we stand politically and even wherever you live in the world. I know many people who have devoted many hours to volunteering this election cycle; my illnesses make me unable to do as much. I may feel very sick tomorrow, but I will know I have done what I can.
Be good to yourself today. Vote if you can and you haven’t already. Help someone else if you can. Let me know how you’re doing! I’ll be back posting again when my fever has passed!
- Megan Oltman
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