Stop Negative Thoughts

Before I started therapy, my mother used to live in my head. She'd watch everything I did, and provided a constant stream of negative feedback. If I did something wrong, she'd yell at me and let me know how stupid I was for not seeing these consequences ahead of time. If something was wrong, she'd explain to me how it was all my fault, and that this was evidence of how rotten I was. If it wasn't my mother, it was my grandmother ("You dummy!") or my father ("Goddamnit, get your $#!+ together!"). They would scream at me, in my head, all day long, and then made sure to take a thorough inventory of everything I'd screwed up, and tell me all about it as I was trying to fall asleep. It was a brutal mental onslaught. And no matter how much I screamed back at them (in my head), I couldn't get them to shut up.

Finally, I asked my counselor: "How do I get that voice in my head to shut the f**k up?" (I had an awesome relationship with my counselor.)

"I'm so glad you asked," she said smiling. "Most people don't have the courage to admit they have that voice---or voices---in their head. They think it makes them crazy. But that's perfectly normal. Would you like to do some EMDR* on it?"

"Yeah! That's be great."

EMDR, for Eye-Movement Desensitization Reprocessing, is a type of therapy that allows the patient to detach from emotionally-charged memories, and look at them from a less personal point of view. And my counselor had special training for trauma recovery designed in Seattle. And she knew what was coming, because it was something true of all people...

What I discovered was, it wasn't my mother, or my grandmother, or my father yelling at me. It was ME. It was my inner child, scared and insecure, who had put on Masks of Authority to appear like my mother, etc., so that I would pay attention and be careful. It was actually a perverse form of self-love, where I was trying to protect myself, by getting mad at myself. When I was screaming back at myself, all I was doing was yelling at my most vulnerable self.

So, instead of fighting fire with fire, my counselor gave me a new thing to say:

Hi, I understand that you are trying to protect me, but this is not helpful right now. If you could leave me alone for a little, I'd be able to concentrate on this more, and be more careful. So, could you please be quiet for a little while? I appreciate your trying to help, but I'm okay right now. Thank you.

Later that night as I was setting about some chore, the Voice started up with it's barrage of negative commentary. I stopped and recited what my counselor told me. And, like magic, the voice went away! A sense of lightness came over me, and I was able to complete my chore in peace. I even did a really good and thorough job. So I stopped again and told my inner child:

See? Everything worked out! You don't have to yell and scream at me for things to work out. It's okay. I've got this managed.

Since then, that voice is mostly gone. Oh, sure, it pops up every now and again, but I just remind it of what I told it the first time, and it goes away again. I am, for the most part, left at peace. And it's a beautiful thing.

Try it! Share your result here!

Thankful Thanksgiving

This year has seen so many wonderful things for me, I can't even begin to describe. I've been able to do physical therapy, and all my doctors have been able to see great progress. My disease has a cure, even if we haven't been able to get access to it yet. I've been well enough to help take care of my step-brother, himself, a disabled Vet. I was well enough to cook our entire Thanksgiving feast, something I haven't been able to do in years, and though I was exhausted afterwards, I felt whole, having been able to complete my part in our annual traditions.

That's one thing that is really lost when one becomes disabled---our ability to participate in events that help us feel the flow of the year. When the flow of our lives is interrupted by a disease, what used to be the change in seasons is now a change in doctors and medication. What used to be the delicate passage of time has become the ticking off of days in a prison, never knowing when, or if you'll ever be set free. When life becomes about symptoms and self-care, spending energy on holidays can be impossible. It's easy to become detached, and feel outcast. Because we can't participate, we lose touch with the sense of joy we used to get.

It can be even worse for caretakers. They can feel caught in the middle, wanting to have fun, but feeling guilty for being well, and being able to enjoy these times, while their sick loved one cannot. They may lose their own sense of joy in the holidays because diseases don't take a vacation, so neither can they. They may try to go out and have fun, only to worry the entire time that they're away, so that going out and trying to take a break can be even more stressful than staying at home (at least you know nothing's going wrong, then).

And I was going to write some Pollyanna-ish things about, "If you can't do what you love, do what you can instead!" But honestly, that can make me more depressed than just trying to pass on the holidays altogether. Doing holidays half-assed, that is, not being able to do the things I used to do, but doing something close to it, to try and recapture that old feeling, just ended up being a reminder of why things sucked now. It was honestly much easier to just let go of the holidays altogether. That was something that happened on planet wellness. I didn't live on that planet anymore.

Here on this new planet, we didn't have winter holidays. It just got cold, you got a break from appointments, and you had to be really careful about stocking up on medication because the pharmacies closed on weird days. Presents aren't given, because no one has any money for anything extra anyway. Time is spent, instead, on studying the new changes to Medicare, which require a degree in government-speak before you can understand them.

Winter was the time when other people spent as much time indoors as me.

Now that I'm starting to make visits back to planet wellness, I can say that it's really good to be home again. I'm not going to be "here" for Christmas yet, but my doctors and I are working on it. And yes, I'd rather it be an either/or thing. I don't want it to be the "this is what I can manage" holidays. I either want the holidays the way I want them, or I want to skip them entirely. If I try the middle road, it hurts my heart more. I "miss out" more if I try to do the holidays in a way that's new, because I can't manage tradition health-wise. I miss the holidays less if I don't participate at all.

Of course I want to enjoy the holidays. But if I can't, then I'd rather do without than be teased by visions of what I used to be able to enjoy. So my real suggestion? If you have to have holidays, find a culture that's completely different and start following their holiday traditions. (There are a lot of traditions from Asia that celebrate the seasons in very beautiful ways.) If you are religious, and following the Holy Days is important to you, contact your local church. There are usually volunteers who will bring the ceremonies to you, as an act of service, if it's too difficult for you to make it out.

Now, for caregivers, if you still want to go out and enjoy the holidays, without the baggage of guilt for leaving your sick loved-one behind, my suggestion is: take a "Guest Book" with you when you go out. When you talk to folks, ask them to take a moment to write some well-wishes to the person you had to leave at home. When the party is over, you can bring the Guest Book home for them to read, to let them know that people were thinking of them, and that they were missed. Bringing home a doggy bag with samples of all the goodies from the party is also a good way to help the sick person feel included. As they read, they can sample the treats, enjoying the quiet after-party with just the two of you.

By asking other folks to send their well-wishes, you also strengthen the sick person's ties to the community when they can't go out themselves. You're doing them a service by making sure they're not forgotten at the celebration. This means a lot to us. We feel included, even though we're not able to be there ourselves. It's easy to feel left behind, even if the cause of our not going is no fault of our own, it can feel like exclusion. It can feel like people don't want us around, even if that's far from the truth. A Guest Book is solid evidence against these fears. It shows us that our presence was desired. It shows us our value to the group, and also reminds the group that we still want to be around, even when we can't. (That helps keep future invitations coming.)

I am thankful that I was able to enjoy "Turkey Day" in the way I like. I had missed it. But I'm also thankful of the path I chose when I couldn't enjoy the day like I wanted. It helped me survive the heartache.

I hope you are staying strong through this time, whatever path you choose for yourself.

Guide for Talking to the Chronically Ill -- Call for Submissions

How many times have you heard from your healthy friends and family that they want to show support for you, but "I just don't know what to say..."? Have you ever wished for a guidebook that you could hand to healthy people, so that they would know what to say? Well, I am working on exactly that.* And I would like your help.

I want to teach healthy people how to communicate with people with chronic illness. I want to teach them how to be brave, how to be supportive, and what we want to hear. If there is someone in your life who is having trouble knowing what to say, I'd like you to write me and tell me what you what to hear from them. The more stories submitted, the more options we can present them.

What would you most like to hear from your family?
What would you most like to hear from your friends?
What are some of the best supportive comments you have heard?
What are the worst things you've heard?
If someone wanted to approach you to discuss your condition, how would you like them to ask?
What do you wish people understood about chronic illness in general?
What do you wish people understood about your chronic illness, specifically?
What do you struggle with most, as a result of your chronic illness?
Do you want people around you to help? If so, how do you want other people to offer assistance?
Other thoughts? Comments?

Please say whether you would like credit, or whether you would rather remain anonymous. Feel free to submit previously written works, blog post URLs, etc. (along with permission to reprint).

Send your submissions to: pamc.writer(at)yahoo.com
Include your NAME (or Anonymous), CITY, STATE/COUNTRY
Your DIAGNOSIS(es), HOW LONG (you've been diagnosed), whether you're DISABLED (and DATE)
(Include links to your blog, Twitter handle, etc., if you wish)

Submission Deadline -- December 15th

*I've been gone from here working on this, and other fun surprises coming later this month!

What Do I Stand For?

I was sitting with my (former) roommate Mike last night, having drinks, and lamenting my current existential crisis. I knew that I had to figure out my direction in life, what it's all for, before I dove back into work again... because once work hits, I won't have time or energy to even ask these questions to myself. It will be work and managing my health to work, and what's this all for again?! I needed to figure out now, during this break in my contract, what I stand for and what I want out of life. I needed some guiding star, otherwise, what's the point? So Mike told me the story of two women stuck by tragedy...

Both had lost their children to violence: one to a gang shooting, and the other to a hate crime. Both women were obviously devastated by their loss. Neither he nor I could imagine the pain that either of these women suffered. And one woman, justifiably so, was left broken and shattered by the experience. She hasn't recovered yet, and no one blames her, because of her experience. But the other woman used her grief to fuel a not profit organization that turned into the NOH8 (No Hate) campaign. She took her pain and turned it into something amazing for others.

It's not difficult for me to answer the question in that song: "What do I stand for?" That's easy. I stand for the rights of the disenfranchised---those struck by chronic invisible illness, who are disabled by their disease, who can't advocate for themselves because they are too busy trying to manage their own illness, and the havoc it brings. I want to shine a light in the darkness to say, "Hang in there... You don't have to walk this alone. I know what you're going through, I've been there myself. Whatever you're going through---no matter how helpless and hopeless you feel---you still have value to me. You're amazing for what you're trying to survive. Give yourself props!"

What I don't know how to do is work towards that goal and work at the same time. I know what I need to do to get my message out there, but that takes a lot of work... work that doesn't pay. So I need to find a way that I can work for what I stand for, and still keep a roof over my head and medication in my system. THAT is what is totally daunting to me. Trying to figure out how to survive in the meantime... oh, that's big.

But I do have something to stand for, and it's about time I got back to it. I'm not like other people, walking around, wondering what their life is about. I know very much what my life is about. I know very much my purpose. Most people aren't that lucky. I found out that my best friend from college died day before yesterday, and it shook me. He was only a few years older than me. We never know how much time we have on this planet. Time for me to stand up.

Reflections on My Trial Work Period

There are three main things I learned with my trial work period: 1) I cannot work 9-5. I cannot be that strict. My body is to fragile and demanding (especially at inconvenient times). 2) The computer industry mostly doesn't care if you can't work 9-5, as long as you can get your work done. My job isn't shift-work. It's project-based work. 9-5 isn't even a realistic business model for my job. 3) I've still got what it takes to do a great job. The love my work. They want me to come back. They're trying to figure out how to bring me back even now, just a few days a week. But I'm torn.

My main concern is that I'm still very fragile. If I work, the rest of the time has to be spent managing symptoms and spoons. Yes, I can do it, but that's all that I'm able to do. I'm 100% work oriented, and that will make you go nuts really, really fast. We have to be able to "take off the uniform" and "leave work at work." But I don't have time for that. I have to sleep enough to have the energy I need to work. That means everything, including taking care of the house, doesn't happen until the weekends. There's not much time left over for rest and relaxation. I'm lucky that my brother is living here and taking care of most of the chores. I'm sure this place would be a wreck otherwise. I'm not sure I can survive full-time work yet.

I could try to work part-time, but then comes the issue of money. Can I afford my medical care, rent, food, medication, and all that, if I'm only working part time? What are my monthly expenditures, and can I afford only part-time work? The last time I did the math, it didn't add up well. Either I work full time and I'm just barely able to make ends meet (not accounting for debt), or I stay on welfare. There's no in-between. I'd lose my benefits and not make enough money to cover the short-fall.

Then there's everyone here, and everyone that I've helped through the years. If I do go back to work, it would mean I wouldn't have time for you or this. And I love doing this. I love shining a light in the darkness and letting people know: "Hey---you're not alone. Hang in there. Make this look awesome!" I don't want to abandon everyone, and I would have to, if I went back to full-time work.

I have much to think about... your thoughts are welcomed.

WEGO Health Activist Award - Call for Nominations

WEGO is excited to announce the start of the WEGO Health Activist Awards Nominations.

This year, they're extending the nomination period and they've added some exciting new award categories. Now's your chance to recognize someone who has inspired you, helped you, or even changed your life this year - nominate them for a WEGO Health Activist Award!

Click to Nominate a Health Activist
Questions? Get all the details on their WEGO Health Activist Awards FAQ page.

If you want to keep up to date on all the latest WEGO Health Activist Awards news and information, be sure to follow WEGO Health on Twitter and Like them on Facebook!

Invisible Illness Week - Post # 300!

It's the close of Invisible Illness Week, and this here is my 300th blog post! Can you believe it? Yeah, I was pretty impressed when I noticed it. That's an awful lot of writing on dealing with invisible illness. But if you have an invisible illness, you know that I could easily write another 400 blog posts on what it's like. Because, when you get an invisible illness, it transports you to a different planet, with new rules and new realities, that other people just don't get. I didn't get it today for my brother.

My brother has vaccine illness from the anthrax shot, and on his planet, a storm was brewing. I, of course, couldn't see it. I don't live on that planet. Some of the things about our two planets are similar---I know that when I feel bad, he feels worse and will need more rest. He gets the same weather triggers I do, and we're often knocked out at the same time. But this evening, all was fine in my world, when everything was not right in his. I was able to get him some emergency supplies (chocolate), but he still got hit with an attack that left him shaking and vomiting.

I made him promise to never cut it that close again, because I hated seeing him like that. But in his defense, he said, "I've never had anyone respect my illness before." And that just broke my heart. I know what it's like to not be believed, not be respected, and being told that you're making it all up for attention. It's soul-crushing... because first you've got to convince folks, no, you really don't feel well, and that's all while you really don't feel well, so you're not your best at explaining things anyway! It's a moral kick in the gut when you're already feeling vulnerable and at the mercy of others.

Then, if it's doctors that don't believe you... well, they're the gatekeepers to most all things health! If it's not a skinned knee, a mild headache, or a cold/flu, you're screwed when it comes to fixing your problems yourself at home. And when it comes to getting a correct diagnosis... it can take 7-10 years to get a correct diagnosis when your doctors believe you. It can take agonizingly longer than that if they're antagonistic towards you. No one likes an angry nurse. An angry doctor can poison an entire institution against you.

And, of course, having someone on your side who believes you, and has seen your trouble first hand, can make all the difference in the world. Despite what the OSD says about the Anthrax Vaccine, "U.S. District Judge Emmet G. Sullivan ruled December 22, 2003 that the Department of Defense must stop forcing soldiers and civilian employees to get the anthrax vaccine, saying the vaccine is an experimental drug not licensed by the FDA." But the DOD back-ended their way around that by having the FDA call it safe after the fact, even though Attorney Mark Zaid cited research from an FDA panel in 1985 -- which was also mentioned in the FDA statement Tuesday -- that said that "no meaningful assessment of [the vaccine's] value against inhalation anthrax is possible," Zaid said. Based on the research I was directed to by the CDC, there have only been two human studies, and one of them showed severe side effects compared to controls. Um.... There have been drugs, good drugs (Demerol, for example), pulled off the market for far less! And yet there's this whole web site by the Offices of Strategic Defense that are telling me, oh, no... it's just fine! No one gets sick from this! Really?? I found "one study shows that the incidence and severity of side-effects are significantly higher with the killed vaccine than with the alum-based placebo (overall odds ratio 0.16; 95% confidence interval 2.38-27.17)." [Source: http://www.ncbi.nlm.nih.gov/pubmed/9682332] Just fine, eh? Would you like to sell me a bridge too?

My brother deserves a chance to be well. I'm gonna work my pants off to make that happen.

Nervous working...

I know my co-workers probably think that I'm lazy. I don't roll into work until 9:30 sometimes. I take flex days where I work 4-day weeks or half-days sometimes. But what they don't know is my mornings are explosive sometimes. I may roll in at 9:30, but I've been up since 6am. I've just been trying to get myself right so I can handle my workday.

I have to take pills to keep me alive. These must be taken in the morning. I wake with nausea, every day (part of the nerve damage). I still have to keep the pills down. So first, the nausea must be managed, and there's no telling how long that's going to take. It could be fifteen minutes... It could be an hour. Or two. I've learned to wake up early and give myself a lot of wiggle room. Right now, I'm taking time out---every few minutes writing a few words---as I try to manage this migraine that decided to upset plans this morning. Oh yes, beyond the usual monkey wrench, there's also the occasional uber-monkey-wrench. There is no negotiating with a disease.

So I have to start waking up earlier and going to bed earlier. I've made a new resolution to go to bed at 8:30pm and asleep by nine, so that I can wake up comfortably after a solid night's sleep at 5:00 in the morning. That should give me enough time to wrestle with my illness and still make it into work at a decent hour.

Today, however, is not that day! lol (*ow* migraine!)

I'm just glad that my work is solid enough that they're willing to be flexible with me. I am very fortunate, and very grateful. It was this flexibility that allowed me to work, even while technically disabled, before the Great Migraine incapacitated me. It's what's going to allow me to work now, even though I'm still technically disabled (I can't meet a 9-5/M-F schedule, there's no training or work aids that would allow me to do so, either). But I know that from the outside, this all looks like I'm just able to come and go as I please, and work easy. No one can see that I'm coming and going as my disease dictates, and that I have a second full-time job managing this beast.

As a result, I must be very careful never to take advantage of this situation for personal want. Their generosity and trust, beyond what they pay me for my work, is making this all possible. It's not right to abuse that. So I do my best to act in a state of gratitude at work. I remind myself several times a day: "We're all so lucky to be here..." This helps me stay upbeat (but not overly chipper) even on tough assignments. It allows me the emotional fortitude I need to look at a problem and go, "We'll figure it out, don't worry," rather than any number of negative responses. And I hope that makes up the difference that I can't keep a good schedule.

But of course, I still worry that they're not going to be happy about my irregular hours. What I should probably do is relax, because nervousness is not going to help the situation. Here's the self-talk I'm going to try to practice to see if I can't settle into the grove of things...

They like you. They told you as much. You're doing good work. It was a two month contract, and they're keeping you on indefinitely. It's more than you wanted. Don't let that frighten you. It means you can relax, that what you've been doing so far, they wholeheartedly approve. Breathe. You've done great, kid! You know what they expect, and you know you can deliver. Don't worry about when---they don't! Just do it well like you have been. Go get 'em, tiger!

Ah, yes... that feels better. What self-talk do you use?

All work and no play *will* make you crazy...

When I heard people who were healthy enough to work, but not healthy enough to to anything else then complain that they couldn't do anything else, I thought they were being ungrateful. I thought that I would give anything to be even that healthy, and if I got there, I certainly wouldn't be complaining! But I get it now... it's not that these people are ungrateful. They're expressing a very real, very dangerous situation, where the mind is not given the time it needs to disengage and rest.

If our minds don't have enough downtime during the week... If it's just: work-sleep-work-sleep-work-sleep-(etc)-weekend, then, as a result, our minds see nothing but work for five days straight. There's no unwind time, there's no reducing stress, there's no "walking away" from it for five days. And a two-day weekend is not enough time to unwind from five straight days of work. This is no way for any human to live. This shouldn't be true of people with invisible illnesses, this shouldn't be true for the platinum miners in Africa. It's not healthy.

There are studies out there ranging from farm, factory and mine workers, where the work day is so long that all they do is work. And the results of running a schedule like this are always shown to be brutal. Just because we can, doesn't mean we should. The mind need rest and relaxation interspersed between work, or our ability to function suffers. For example, from All Work and no Play can be Deadly (Jul. 11, 2002), Sandy Smith says, "Feel like you're being worked to death? You might not be far from the truth, according to a new study, which found that long work hours and little sleep or relaxation time is a recipe for disaster."

So, blessings upon blessings, my employer is willing to work with me and let me go to a part-time schedule. I need to get more reliable technology, so I can be in full contact with them should they need me, but I will be able to do things like work from home and cut back my hours to less than 40/wk. That will allow me to have the down-time I need to be fully-functional at work. I won't have to worry about the quality of my work suffering as a result!

And my apologies to those whom I didn't believe before now. I get it now, and you're right: it's not healthy to try to just work and sleep during the work week. That's unacceptable. You absolutely need more than that.