Day 10: Silly Loldogs and Lolcats Make Everything Better!

Hair washing day

Day 10 – Saturday, Nov. 10
LOL Post. Write something funny or share something you found funny
OR
Should people post about their (or loved ones) health on Facebook? Why/why not?

I'm going to fill this post with silly pictures I keep because they make me laugh. Many of them are health related. Many of them are dogs. Enjoy!


 

Until there's a lab test for M.E., I'll settle for these!

It happened to me. It can happen to you!

I make a point of sitting on my ass at least three times a day. Unless I'm too feeble for even that.

Luckily I have the best husband, so I never have to cook!

Brain fog is ever so much fun, isn't it?

I don't like doctor appointments either.

Is this post too silly? Have I put in too many silly pictures? 

NEVER!  =D

I hope you have enjoyed your dose of silly. These are things that make me giggle when I'm feeling down. If you have your own favourite silly pictures to share, please leave them in the comment section.

But on the days when you're really down, remember to shake ur bootie. Even if it's just a feeble shake!

#NHBPM

Day 9: I Can Show You the World

Day 9 – Friday, Nov. 9
Community Care Package. Create the perfect care package for your members or fellow patients
OR
Tell a descriptive story about a memory

This is not a story about illness. The historic election on Tuesday brought this memory to mind.

It's 1992. I'm in college, and the girls on my dorm hall are painting a mural. It's Aladdin and Jasmine on the magic carpet, with the genie nearby. We have little cups of paint. There's one accident with the carpet. I worry that we'll be billed for it at the end of the year, but we never are. We're laughing about how Jasmine's waist is the same size as her neck. At some point, we end up taking a break, sitting on the floor and leaning against unpainted bits of wall. My mind is drifting a bit from the conversation, and when I drift back in, I realize that Bev is telling us that she is a lesbian.

It's an electrifying moment for me. I'm 20, and I've never met a gay or lesbian before. (Or so I believe at the time. I know now that I must have known dozens, but growing up where I did, and as sheltered as I was, no one was out.) Bev is the first.

We all take it well. Or as well as a group of girls in a southern state at a religious college two decades ago can take it. Some of us are supportive. Some of us are silent. I fear I am in the latter group. Gradually, we start painting again. Someone turns on the cassette player again, with the Aladdin movie soundtrack playing. One Jump Ahead. Friend Like Me. A Whole New World.

Bev's looks were that of the stereotype 'Butch'. She was large, and not feminine in appearance. She occasionally had a few hairs on her chin that needed to be plucked. A couple of years later, when she was my roommate, I asked what she would do if it turned out that she just needed more female hormones. What if that would make her straight? Would she do it? I wince now at my youthful insensitivity. I knew so little then about the LGBT community. I don't even know if the term 'LGBT' existed then. 

I lost touch with Bev after college, but since then, I've seen a whole new world emerge. Gays and straights have come together to the ballot box to vote to allow same sex marriage in three states. Civil Partnerships have been legal here in the UK for years. There is a younger generation who doesn't understand what the bit deal is about homosexuality. They'll never remember the first time they met a gay person, anymore than I remember the first time I met someone of a different race than myself. 

There's still so much hatred. So many people who feel threatened. The state where I went to college, where Bev grew up, has an anti-gay amendment in their constitution, as do more than half the states in the US. The Church of England is opposing plans by the legislature to convert Civil Partnerships into full marital rights.

But on Tuesday, three states voted to allow same sex marriage. It won't be long before bigotry against gays goes the same way as racial bigotry and sexism, and it's thrilling to watch those walls crumble. But it will never mean the same to me as it will to Bev, and to the millions of gays and lesbians out there who simply ask to be treated as equals.

#NHBPM

Day 8: Dear M.E.

Day 8 – Thursday, Nov. 8
Write about how you choose to write about others in your blog. (Friends, family, etc)
OR
Write a letter to your health

Dear M.E.,

You've given me a lot of things. You've given me pain and fatigue and brain fog. Insomnia, tinnitus, a walker, a wheelchair. Allodynia, oversensitivity to noises, and loads and loads of quality time with my bed. I've accepted these things from you because I don't have a choice. But there are some things I won't take from you.

Let's start with bitterness. It's something you offer to all of your patients, isn't it? "Look here. Look at what you've lost. The hiking trails in the mountains. Your dream of travelling the world. Machu Picchu? Ha! You can't even walk to the corner shop. Your career? Forget it. Do you remember what it's like to wake up without pain? With a clear mind? With enthusiasm about the day? If you still do, you won't for much longer, because I eat at your mind too. Remember when you were 'the smart one' growing up? You don't feel that way anymore, do you? I've taken all that from you. Isn't it unfair? Aren't you bitter?"

No. I'm not. You can keep the bitterness. I know where that road leads, and I'm not going to walk down it. It's an easy path - ever so tempting - but no. Keep your bitterness. I do not want it. I will not have it.

There is fear. This one is harder to avoid. I am human, and humans fear. I fear the darkened room where the most severe M.E. patients lie in a bed that they never leave. Catheters, I.V. tubes, hushed voices. Limited interaction with the world. I fear that room is in my future, and you have given me that fear. But I don't have to keep it. The room is there or it is not there, and fearing it today will not make it more or less dreadful should it occur. 

I will look at my fear. I will remind myself that the future could hold anything, and I will reach it at a pace of 60 minutes per hour. And I will let it go. I do not want that from you.

You offer loneliness. For a woman whose life is lived from a bed, you make it difficult to refuse. I leave the house so rarely. Once a month, a doctor's appointment. Once a season, perhaps, an outing of pleasure. We went to an art exhibit a few months back. We're hoping next month to go out to see a movie. These outings require excessive planning, research, and effort, and sometimes have to be frequently rescheduled before they occur. I can spend weeks seeing no one but my husband. And even when I go out in the world, I feel like a stranger there, in my wheelchair, being pushed through the world of the healthy.

But to counter loneliness, I have love, and I have the technology to carry that love from around the world to the laptop I can cradle in bed. And even if the future of the darkened room happens, and I can no longer use a computer, I will still have the love. You can't take that from me. And so I am often alone, but I am not lonely.

Worst of all, you try to give me guilt. "You don't really pull your fair share, do you?" "If you were healthy, you could've..." "If you weren't so sick, he wouldn't have to..." "If you just tried harder, you could..." This is the worst gift, because you try to make me feel guilty for things that you've done to me. Victim blaming. And it's the most effective, because so much of society joins in with your voice. They want it to be my fault somehow - perhaps I'm refusing to get well, or I didn't eat the right foods, or I let mental illness get the best of me. If this is a world in which people can just fall ill one day and never get better, then it is a world in which it could happen to themselves, or their loved ones. That is a frightening world, and it is much more comforting if I am to blame. It is also more convenient for society, because if I am to blame, then no one need feel responsible for trying to help. No need to put research money to discovering a cure, or social care resources towards helping me get through my daily life. And so the news talks about benefits scroungers and frauds, and insists that M.E. is all in my head. (As if I haven't had mental illness before and beat it. I wish you were only in my head. I'd kick your ass if you were!)

I do not want your guilt. I am not to blame for my disease. I find more guilt inside me every day, but I'm getting better at unloading it and sending it back to you. My husband does not resent caring for me. I did not do anything to deserve getting sick. Even if some of society resents caring for the disabled, some do not. 

I will take the pain. I will take the bone-crushing fatigue. I will take the losses you've inflicted on me. 

But I will not accept suffering from you, because I do not suffer. I am not bitter. I am not lonely. I will not fear. I will not feel guilt. These gifts I return to you, unwrapped and unwanted. I have a life that I live from a bed, and that life is precious to me. You can leech off of it, but you cannot poison it. I will not let you.

Your patient,
Happy

#NHBPM

Day 7: The Waiting Room

Day 7 – Wednesday, Nov. 7
Redesign a doctor’s office or hospital room

I'm going to redesign the waiting room, because I end up spending more time there than I do actually in the doctor's presence. And it's because of the waiting room that I end up being extra fatigued for days after seeing my GP. 

The problem with waiting rooms is that they aren't designed for sick people. The waiting room at the GP is no different than the waiting room at a government office. Both offices should be disabled accessible (but often aren't), but only one should be designed for sick people. And it isn't.

First of all, let's address accessibility. Wheelchair spots. Where the heck am I supposed to park myself when the room is so full of seating that all the open spaces will block foot traffic? What the heck is up with that? Do you think disabled people don't go to the doctor? What the hell? I expect accessibility when I see my medical professionals! Get it right! The seats are never all full. Move some of them out of the room to leave room for the disabled folks. (And hey, moms with pushchairs too, but I'm not in that category myself.)

Now let's talk about sick people. Not just sick people, but really sick and feeble patients. How about a separate room for the really feeble people who aren't really strong enough to sit up? A room full of recliners, or beds or at least some sort of ability to become horizontal. This room for the very feeble should have noise restrictions. No shouting children, though quiet children are okay. The lights should be dim and the stimulation levels low. This room would be for people with migraines, ME, flu, or any other illness that leaves you shattered and weak. Yes, I know that some of the other people in the waiting room are sick too, but there are different levels of sick, just as there are people just in to have their kids vaccinated or their smear test, and these people are not weak. It's us weak people who need a place to rest while we wait.

It's dreadful going to the GPs office these days, simply because of all the time I have to spend sitting up when my body is not healthy enough for that.  I'd love to be able to lie down while I wait. Do I expect it to happen any time soon? No. Not at all. It's just a fantasy.

#NHBPM

Day 6: News of the Weird

KENT, UK - A strange hominid creature that scientists have dubbed "Average Foot" has been spotted by a lone witness in a small flat near the sea in southeast England.

"It didn't look human!" the witness reported. "It had hair sticking up everywhere, and the noises it made were terrible. It seemed to have encountered humans before at some point, because it had some clothing on inside out."

It was reported that the creature seemed to be making attempts to communicate, but only in grunts and groans. Our witness thought there might have been a request for tea, so he went into the kitchen to put the kettle on.

"It seemed to be in pain. It was awful. It moved so clumsily. I think it may have gone to the loo, because I heard noises in there. But then when I came back with the tea, it was back in bed and fast asleep. I couldn't bear to disturb it."

One foot was left sticking out from under the duvet, leading the witness to dub the creature "Average Foot".

#NHBPM

Day 6 – Tuesday, Nov. 6
News-style post
OR
Write about a time you had to take the high road

Day 5: Assume Good Faith

I'm going to do something different today, and actually use one of today's prompts!

Day 5 – Monday, Nov. 5
Health Activist Soapbox.
OR
Write a #ListOf3 Things that you’re thankful for / excited about / or inspired by

Dear doctors, nurses, care-givers, benefits decision makers, friends, and family members of people with invisible illnesses: I have one request to make.

Assume we are telling the truth when we describe our symptoms and capabilities. Assume that we understand our bodies better than anyone else does. Assume that we really do want help and are not just malingering. Assume that we want to know what can be done and what can't be done for us, and that we want to be full participants in our health care decisions.

Yes, there are people who fake illnesses, and people who truly do not want to get well. Assume that we are not among that minority. Start from a position of trust and belief and don't jump into suspicion and accusations unless you've actually seen evidence.

Assume good faith. 

Please.

#NHBPM

Day 4: Already broken

This prompt is from Day 2, but I'm probably going to be jumping around a lot anyway. I don't always have anything to say on the fixed prompts, but the important thing is to blog something.

Find a quote and use it as inspiration

This reminds me of something I've wanted to write about for a while. It's a story I first read in Toni Bernhard's How to Be Sick, but it's an ancient Buddhist parable.

You say, "Don't break my glass!" Can you prevent something that's breakable from breaking? If it doesn't break now it will break later on. If you don't break it, someone else will. If someone else doesn't break it, one of the chickens will! The Buddha says to accept this. He penetrated the truth of these things, seeing that this glass is already broken. Whenever you use this glass you should reflect that it's already broken. Do you understand this? The Buddha's understanding was like this. He saw the broken glass within the unbroken one. Whenever its time is up it will break. Develop this kind of understanding. Use the glass, look after it, until when, one day, it slips out of your hand... "Smash!" ... no problem. Why is there no problem? Because you saw its brokenness before it broke!

I'm going to tell a story about my mother. When I was in high school, my mother got sick and never got better. It was many years before we learned it was fibromyalgia. I graduated more than twenty years ago, so she's been sick now for longer than that. And in all that time, she's never stopped rebelling against her illness and fighting to get better. She gets that from her father, who fought against cancer for close to twenty years (Maybe longer? I'm not good with dates.) after he was told to say his goodbyes. For him, that fighting spirit added years to his life and many many happy memories with his family. And perhaps that fighting spirit adds some quality to my mother's life that she needs. But it also adds a lot of suffering, because every day she spends wishing she were a "real girl" again, as she puts it, is a day that she's unable to accept her life the way it is.

I was diagnosed with ME in 2008. I was both relieved and scared. Relieved because I finally had a name for what was wrong with me, and scared because I didn't know enough about it to know just how bad it was. I went home and spent some time on Google. I read somewhere in my searching that only 5% of ME patients experience a full recovery. I realized I was probably going to be sick for a long time, maybe for life. I think I went from diagnosis to the first steps to acceptance within a few days. I certainly had times after that, where I cried or raged or simply whined about how it's unfair, but in general, I've accepted it.

So why was I able to accept in days what my mother hasn't been able to accept in decades? I think the answer is in the broken glass story. You see, when I was a little girl, I had cancer. It was removed surgically and never recurred, but for years I was going to hospitals and doctors regularly to be examined. Since all this happened in childhood, I believe it helped form my own mental picture of myself, and along with various other characteristics, I began to self-identify as a "sick person" from a very young age. I knew, somewhere inside, that I was already broken. My mother still sees herself as that whole and perfect glass, and resents the breakage.

I don't think I'm a better person for accepting what my mother still fights against, and there are probably some people who think her struggle is nobler than my acquiescence. But I do think that acceptance of being already broken has given me peace and made it easier to bear being ill. 

Dear Mom: I hope you don't mind me talking about you in this post! <3 you for always!

#NHBPM

This post is part of National Health Blog Post Month. 2012 may be winding down, but Health Activism is going strong. Let’s rejuvenate our blogs and do one last advocacy project before we head into 2013.

You may have heard about National Blog Posting Month or NaBloPoMo, a month dedicated to the art of blogging, taking it to a new level by pushing all participants to blog every single day of the month.

Well, we are doing our own Health Blogger version all month long. NHBPM 2012 is here! Click the image above to sign up now to join the 30 day carnival and get 60+ prompts catered specifically to online health leaders, bloggers, and anyone who wants to try their hand at blogging about health. 

Day 3: Why I write about my health: In which I discover that NaBloPoMo already exists

I thought my idea to blog post every day in November was my own, but apparently the idea existed already. So I have a bandwagon to leap on! Wooo! And it even comes with prompts for each day of the post.

Day 3 – Saturday, Nov. 3
“I don’t know about this, but I’d like to.”
OR
A post about a conversation with your doctor

Nah. I don't like those prompts. I'll use one of the first day's prompts.

“Why I write about my health”

Today was a typical day for me - not a good day or a bad day, but what passes for normal. I woke up very slowly, with my head feeling like it's stuffed with cotton and my muscles aching terribly. I spent most of the day in bed, but went to our window seats for meals. I had two naps, morning and afternoon, and my waking time was spent cuddling with my husband, doing a bit of online surfing (from bed, with the laptop), playing video games on my tablet, and chatting with my mother over Facebook. A typical day, lived in a bed. A good day. I'm generally a happy person, and I'm glad to be writing again. I'm glad to be cared for so well. I'm glad that my illness isn't worse than it is. I'm most glad for the internet. I would be so isolated without it.

So this is why I write about my health. Because I need to. Because it's easier than talking about it. Because it's easier physically for me to type than to talk, but because it's also easier for me to open up in writing. I don't think my blog is unique. I've seen so many blogs by people with chronic health conditions, and like me, they all seem to be calling out to the world to say "I exist. My illness is real. Believe me."

#NHBPM

Day 2: Hyperventilation

This morning, I woke up hyperventilating.

This isn't unusual, but fortunately it isn't too often. Maybe 4 or 5 times a month? Maybe a bit more? I guess I could look on my Patients Like Me symptoms to see, but these days don't always get recorded.

I know I've been hyperventilating in my sleep because my lips will be numb. My breathing will be fast and shallow. And my dreams will have been brilliantly vivid, and often nightmarish. I don't know if the nightmares cause the hyperventilating, or the other way around. In this case, it was that most common of nightmares - someone in my family is being cruel to me and refusing to acknowledge that my illness is real.

Here's where I put in the disclaimer that no one in my family ever does this. I get a wonderful amount of support from everyone. But it's a fear, and apparently a real enough one that it reaches into my nightmares and haunts me. I hear media messages every day about benefit scroungers and people with fake illnesses, so it's easy to imagine a world where even my closest family, who have seen me at my worst, won't believe me either.

I buried my face in my nightshirt to control the hyperventilation, and then I asked my husband to get me a nice cup of tea. By the time I'd finished it, the nightmare was gone. My breathing was back to normal. And then I went back to bed. Because living with ME means that I spend most of my life here. Luckily, most of the time, there aren't nightmares.


(Day 2 of my daily blogging goal for November)

Day 1: My NaNoWriMo Goal

Every year, I have friends who do the NaNoWriMo challenge - National Novel Writing Month. Which is international now, but the name is stuck. The official goal is to write 50,000 words in a month's time, which is the length of a short novel.

I am not going to write a novel, and I'm certainly not going to write 50,000 words. But I am going to try writing a blog post a day during the month of November, just to see if I can.

(This is where I cheat and backdate this post to Nov 1st, even though it's really November 2nd. Shhh! Don't tell on me!)