PFAM: Holiday Wishes

Merry Christmas readers!! This month, I asked my fellow spoonies what their thoughts were on the holiday season. If they could ask for anything (without being worried about offending someone), here’s what they came up with:

Leslie at Getting Closer to Myself came up with a Christmas wish list of items that she’d love for Christmas. Like my own virtual shopping lists, these include both things that she’s admiring and things that help her as a chronically ill woman, reminding us that while someone is ill, that isn’t their entire identity, so not all their holiday wishes are illness-related!!

Rachel at Fluted Cups and Ampersands reminds us that just because thinking about illness makes you uncomfortable or feel guilty or anything else, it’s okay to talk about it. Part of coping with illness is helping other people around us cope with it. We need people to lean on, and we also understand that you are not superwoman. (That’s part of the miracle of illness; we learn our own mortality but we also become sympathetic with others’ mortality.) Let us help you; allow us to make this a two-way street where you give but you also receive.

Duncan of Duncan Cross points out that holidays can be stressful for those with chronic illnesses. Just because we recognize our mortality doesn’t make us immune to the stress of the holidays. Duncan says that holidays (1) destroy routine, (2) require (physical & emotional) work, and (3) are in the winter. All of these are especially taxing on the ill. So please cut us a little slack. (And Duncan: I didn’t beg; I inspired.)

Elizabeth of The Girl with Arthritis gives a tutorial on how to hug someone with a chronic illness, particularly one with inflammatory arthritis. If we somehow summoned the strength to make it to a holiday event or even to crash on your couch, we’d prefer that your gratitude not make our condition worse. Learn from Rachel on how to safely hug someone who’s physically hurting. And think about waving or shaking forearms (instead of hands) to reduce the amount of germ-spreading. We’d be eternally grateful.

Ms. Rainbow of RARainbow quotes the Dalai Lama saying: “Our prime purpose in life is to help others. If you can’t help them, then at least don’t hurt them.” Instead of bullying someone whose life is different than yours, learn more about their situation or just smile. Even the smallest act of kindness can mean the world. (Ms. Rainbow, great quote by the Dalai Lama; I’ll have to file that away with my memory of meeting him!!)

Rihann Louise of My Brain Lesion and Me notes that “Christmas allows us the opportunity to give back to those who are there for us everyday of the rest of the year. The presents we give, of course, do not have to be expensive, but they are simple small token of thanks for everything that they do for us.” It’s so true. I’ve started writing holiday cards to the people who have been the most supportive. Just writing a note saying why they’re so valuable to me as friends has been profoundly therapeutic to me and also fits right into the spirit of the holiday. Because really that’s what we need the most: your support. (At least that’s my holiday wish.)

That’s all, folks, for this month’s round of Patients for a Moment. Look for some new and exciting things happening in the new year. Among them, Duncan Cross, founder of PFAM, is starting an online book club for patients. Every three months, the book club will read, review, and discuss a book about illness and disability. If you would like to participate, or suggest a book, get in touch with Duncan at dx@duncancross.net. (Note that both I and Leslie already have book lists, so if you’re looking for some “light” holiday reading, here are some suggestions.)

Best wishes and happy holidays,
Abigail

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A Gift

chewy chocolate gingerbread (with recipe)
chewy chocolate gingerbread
Someone is paying me to make 5 dozen holiday cookies for them. Now they’re not paying me very much, and it’s not a full-time job or anything, but it’s a big deal for this spoonie. Why?

Because someone is paying me to get out of bed. That’s big. And, this gluten-free, dairy-free girl can just follow a recipe for once & actually just make something the way Martha Stewart intended. And I can experiment and do something wacky & sophisticated just because.

At this point, that’s a gift. And I’ll take it. I’ll take any gift someone is willing to give me. Especially if they’re willing to pay me for it. Even if it is a perfect stranger.

Taking one day at a time,
Abigail Cashelle

Random Symptoms: Ear Pain

So, my left ear has been killing me. For. No. Good. Reason. And I’ve been working on a new quilt but apparently I can’t add any more. (When your queen size quilt is 35% smaller than it should be, we have issues.) And so life has been exciting.

But this ear thing? Seriously. It’s driving me crazy.

Half the time I think it’s a jaw thing. Because my 13-year molars are still emerging on the left side, and the gum is swollen. Plus if I don’t open my mouth for a while, it hurts more.

But the other half of the time it feels like an ear thing. Like WAY deep inside the left ear. And it hurts to hear. And to think. And to sleep.

The ENT I saw removed a bunch of ear wax from that ear, which relieved a bunch of the pressure, but it still hurts a lot.

I’m secretly convinced that there’s something wrong with the left side of my body. Okay, it’s not really a secret. And it doesn’t take all that much convincing. It’s more of an observation.

Anyhow, I remember having bad TMJ pain when I started graduate school two years ago. But somehow this feels different. Maybe I need to go find the notes from the doctor that I saw back then.

So much to do. Somewhat overwhelmed. And out of spoons. Do you think reading The Ear Book would just make this all better? Because I used to love that book. And it would be so much easier.

Just another day in the life,
Abigail

Been Out and About

I made it out shopping yesterday. (Yes, exactly what every girl needs to do when she’s supposed to be packing.) And I’ve been packing up more of my stuff. It’s not exactly earth-shattering, but it’s better than the past few weeks!!

Here’s hoping that it keeps getting better.

Abigail

P.S. The candles I got for 40 cents were pretty awesome too. Vanilla Berry: ummm, wonderful.

PFAM: Recharge?

Duncan is hosting Patients for a Moment this month, and he asks us how we recharge. Well, Duncan, funny that you should ask. I just got home from a whirlwind weekend of visiting family, attending a wedding, and seeing some old friends. Right before that, I just finished a whole semester of working really, really hard to try to satiate the ravenous lion only to wind up leaving my graduate program. Oh, and to top it all off, I’m battling massive inflammation of unknown origins; after the last specialist told me that she was SO glad I was responsible and came in to see her, then she capped the exam by telling me to go home and “be well”. (Ummm, yeah, I think Dr. Bryan was right when he said, Well, if only it was that easy.)

So apparently, I have been charged to “be well” and all I feel like is being trapped under a mattress (or 500). There are a million things I could be doing like applying for jobs or doing laundry (or updating this blog or reading my own email!), but I just don’t feel like it.

iPhone 3GS Low Battery
except my battery has about -5% remaining

I’ve decided that I need to take a week off. A week where I do nothing. So far it’s been interesting. I’m not sure that I’m getting better. But, the key thing here is that I’m not getting worse either. And in the world of vicious circles of downward spiraling symptoms, that is a MAJOR accomplishment.

Some of my friends have come over to visit me. They’ve brought food and presents and fun stories. But mostly I’ve just tried desperately not to fall asleep when they’re here. Diana even came and watched a movie with me, and I wound up laying down on the futon through almost all of it.

It’s hard not to do anything. But I’ve decided that in order to recharge, I need to stop doing stuff. Just say no, so to speak. Just roll over and keep sleeping. And not feel guilty for not doing anything. All the stuff I normally do to recharge? Have friends over, write letters, work on crafts, play the piano….. Yeah, I don’t have the energy for those either.

After all, someone called me yesterday about a credit card application. After about 30 seconds of me trying to think and failing miserably, I just told him to nix the application. I was so glad it wasn’t someone following up on a job application. Because I would have probably told them the same thing. And when a girl gets like that, it doesn’t matter what things are on her to-do list. Recharging gets priority. Because this girl has been running on empty for far too long.

Abigail

Counting Our Blessings: ME Synchroblog Part II

We’ve been writing and talking about blessings in the midst of illness. And by the positive, I’m not just referring to the “silver lining” but the substantially good things we’ve experience since we’ve become ill (or because of it.) {gasp}

Sarah at Dead Men Don’t Snore confirms the bitter truth we all know (and perhaps try to ignore.) Having any illness is hard. Add chronic, add young adulthood, add debilitating, add misunderstood, and you get a very difficult experience. It sucks, majorly. There’s no way around it, folks.

Arielle at Dear Little Disease confirms that having ME/CFS is really not that fun. Yes, she’s adopted a cat. And, true, she now has a “valid” excuse for riding her skateboard around the house(!!) but I think if she had a choice, she would run for the hills when ME/CFS came up as an add-on to life.

Despite the devastation ME/CFS causes, the consensus is clear: we as the ill have learned to value life in a new way and our hearts have been broadened.

Lydia at A Path through the Valley writes that she’s learned that there’s a value in living. Just being is an accomplishment, and something to be treasured (sick or not). Furthermore, she’s discovered “telling the truth about suffering breaks down barriers”.

Barry writes that in addition to drawing closer to God and finding new hobbies (me too!!), his heart and mind has been broadened.

Charlotte at Info Freak agrees that somehow being sick has made her a nicer person. She writes, “It seems an odd thing to admit as I wasn’t particularly terrible before, yet I have noticed I am definitely a lot nicer these days. I have more compassion for my fellow humans having experienced some pretty low times at the start of my illness and now try not to judge others as I realise we all have our own particular trials to go through.” In fact, she admits that she’s more forgiving toward her husband and more flexible about the way things have to be.

Lastly, Tricia comforts Sarah that frustration by the difficult of life with a chronic illness means “you still have a lust for life and if you still have that then you haven’t given up”. I like it Tricia!! Having a “lust for life” is important, no matter what the cause. And that’s what Lydia means when she said that she’s discovered a new perspective on life.


I would definitely, without hesitation, run for the hills if given a choice between having ME/CFS and not having it. This conversation is far from over, but it’s definitely helped me consider illness from a different angle.

For all those people who say that a “positive attitude” is all you need for healing, that doesn’t mean that you just wish the illness away. It doesn’t mean that a “negative attitude” results in physical pain. A positive attitude doesn’t mean that you let go of hope for a cure or for understanding from the world around you.

It does mean that you’ve come to terms with the concept that a bad situation can make you a better person. It means that you’ve decided that you don’t have to fully comprehend something in order for it to be real. It means that you’re not afraid of the truth, you’re not afraid of the world’s scorn, and you’re not afraid of the difficult.

Abigail Cashelle

in which Dr. Mark thinks of the squirrels

All kinds of great things happen in Dr. Mark’s exam rooms. We have elephant exam gowns. We talk. We listen. We try not to fall. We joke. We cry.

SquirrelThe other day I was talking to Dr. Mark about the antibiotic he had prescribed me the previous week. I told him that it made me feel really sick. So I stopped taking it. I threw it out the window.

He looked at me with a completely straight face and said, You can’t do that. I hope you didn’t really do that. That medication is not meant for the squirrels.

And that was it. We moved on other more important topics. About what I was going to do now that I couldn’t take antibiotics. About how much pain I’m in. About quality of life. About the fact that a lot of specialists don’t take me seriously.

But, that moment? It saved the whole visit from being incredibly serious. And it shifted the focus from the XXXXL gown. Mostly, it was just funny. The idea of me using a whole spoon to throw medication out the window. The idea that Dr. Mark’s gut reaction was to think of the squirrels.

Moral: don’t litter. Remember the innocent squirrels.

Abigail

in which Diana points out my productivity

There was a day last week when I did not get out of bed until 3:30 p.m. This is bad news for Abigail. Especially for the stacks of books piling up for me to read. Nor does it bode well for the amorphous blob. (Nor for a lot of other things for that matter.)

Anyhow, there was a day I did not get out of bed until 3:30 p.m. And I was supposed to be at Diana’s apartment at 5 pm for a knit/crochet movie night. Seeing as how I couldn’t just roll out of bed into her apartment, I figured by 3:30 p.m. I ought to get out of bed if I still wanted to go.

When I got to Diana’s at 5:30 p.m., we were comparing notes on what each person had done that day. I said that I had done nothing. Because I didn’t get out of bed until 3:30. Well, that is, I got out of bed for both breakfast and lunch and then went back to bed. I also finished running the three loads of laundry I had started the night before. Oh, and I actually cooked lunch. And I graded 10-12 papers while I was eating lunch. I’m pretty sure I also put away some books that were in the middle of the floor because I kept tripping on them on my way back to bed.

This was Diana’s response: For a person who spent the whole day in bed, you certainly found a way to get a lot done! I think you’re one of the best skilled people in being productive while spending all day in bed.

Yes, it’s true. I have a lot of practice. And I know that laundry won’t do itself. But as long as the clothes are clean, they can still be worn even if they’re in a gigantic pile on the floor. Which means that I do laundry, I just hardly ever have the energy to put it away. Things like that: I know how to get stuff done that absolutely needs to get done…. And apparently, I know how to do that from bed.

I never realized that that was a skill. I never give myself credit for anything when I lie in bed all day. Maybe I should start. Because that’s a pretty impressive list of things accomplished on a day when “nothing happened”.

So fortunate to have friends with perspective,
Abigail

A Good Day!!

I feel accomplished 🙂
I’ve been having a reasonably good & productive day. I cleaned my shower (first time in almost a year!) & then took a bath. I went to church with Diana. I made lunch (gf pigs in a blanket & skillet-fried potatoes) plus baked an apple pie for the two of us. I slept for two hours. I did laundry. I ate dinner with Gretchen; she made dinner so I helped her with her craft project. I wrote to my grandmother. (I do that every week.) Since then, I’ve been studying. I’m halfway through my first of the 50 books!

Abigail