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!)

My best friend

My dog

She's been with me for 13 years. The best thing about her was the sheer joy she took in life. But now that joy is gone, and that tells me it's time to let her go.

I wish I knew how to tell her what she's meant to me. How to thank her for being there through so much, and still loving me when I became sick. I get down on the floor and cuddle her when I can. I say the words to her, with my body pressed against her, so she can feel the vibrations of me speaking. Her hearing is gone. I give her human food, as well as the really cheap and smelly canned dog food she loves so much - nutrition doesn't really matter now. Most importantly, we're having the vet come here, so she won't spend her last moments in a vet's waiting room being frightened.

She had a cancerous lump removed a few years ago. Maybe it came back. Perhaps there was a stroke. The vet said some of her behaviour (compulsive circling, trying to climb into corners) is evidence of damage to the frontal lobe of her brain. The way her rear legs kept crossing was evidence of neurological damage there. I'll never know what it was that took her joy away, leaving her behind as a ghost of the dog that I loved.

It'll be this week. I'll probably call this afternoon to make the appointment. I won't ask for her ashes back. It won't be her. She'll just be gone and leave behind a hole in my life and my heart.

Goodbye, my angel.

When your spouse is your carer

I thought I had accepted my illness. I really did.

Then my husband got a new job (a good thing) and we moved to a new flat (a good thing) and because he's not constantly travelling anymore, he became my primary carer (also a good thing).

We were prepared that this might cause some problems. We foolishly thought the emotional burden of it would fall mostly on him. After all, I'd been receiving care from others for some time. I thought I had accepted it.

I realized today there is a big difference between a paid carer and a spouse-as-carer in the way it feels emotionally. There is no guilt or insecurity in asking a paid carer to do something. It's just part of their job. But as a wife, I feel like I haven't 'earned' the care I'm receiving from him. I don't feel like I'm giving enough to him, emotionally or physically or sexually to be the partner he deserves.

So now there's this huge knot inside me of fear and insecurity and guilt and feeling like I'm not enough for him that I have to figure out how to deal with. I recognize that it's all me. He gives me all the love and reassurance that he can to try and counteract these feelings. But he can't go inside me and try to untangle all of the mess that's there. It's another aspect of my illness that I simply haven't dealt with yet. So now it's time to start.

Even good stress is stressful

Things are starting to happen towards getting us moved this summer. We need a disabled friendly flat. I have ME, my husband has arthritis. Even the dog, who is about 13 years old, struggles mightily with the 3 steps from out door up to ground level. I think her medication will need to be increased when she next sees the vet.

We started making a list of requirements for a place for us to live. So many, and it's going to be tough to find all of them along with "allows dogs". Then we started making a list of things that have to be done to prepare.

This is all good stuff, and I like to talk about it, but it uses spoons, and it's still stressful.

Then I got the ESA decision that put me in the Work Related Activity Group again. That was stress of the not-good kind. I'm appealing it, but unhappy that I have to, when I clearly can't walk 50 metres - or even 10 - without experiencing severe exhaustion and significant pain. I've been referred to the NHS wheelchair service. I have a loaner wheelchair while I wait for the appointment.

Then there was all the stuff in the Lords, and the Spartacus report, and the continued disabled bashing in the news. The latter is having the intended effect. Even my carers have started making occasional references to people faking disability, despite the evidence of fraud being 0.5%, and the expense from it less than official error.

I wish they'd just treat us with dignity and assume we're acting in good faith and telling the truth about our own experiences. I so wish that.

I have not posted in a while

Monday Nov 21, I had a nearly pain free day. I was very careful not to overdo it.

Tuesday Nov 22 was the start of a flare. This one makes me want to sleep, all the time. I don't know what triggered it. I'm still in it.

I'd have more to say, but I'm too tired to think of it. I think I'll just go back to sleep.