Showing posts with label Thankful Thursday. Show all posts
Showing posts with label Thankful Thursday. Show all posts

22 November 2012

Day 22: Thank you

Day 22 – Thursday, Nov. 22
Thanks Post. Write about what you’re thankful for!
OR
Write about change

I'm thankful for so much this year. I'm thankful that we're in a new flat that isn't damp and mildewy. I'm thankful that my beloved dog isn't suffering any more. I'm thankful for my new pain doctor, who has purple streaks in her hair and far more knowledge and empathy than any doctor I've seen in many years. I'm thankful for the NHS, with all its flaws, and the social benefits system in this country (even though it's being gutted).

Actual things I'm thankful for are all the little modern adaptations that make life better for someone who is disabled. Things like the electric bed warmer, my laptop, wireless broadband, a kindle full of ebooks, my indispensable bed-rail, my wheelchair - it makes my butt ache, but it's better than nothing!, the remote control fan, feather pillows, audiobooks... the list could go on and on.

But mostly I'm thankful for my friends and my family, and most especially, my husband. He cooks my meals, washes my hair, helps me in and out of bed, pushes my wheelchair, reads to me, loves me, and never ever utters a syllable of complaint that 'in sickness and in health' meant a lot more sickness than we thought about.

Oh, and he made a brilliant Thanksgiving dinner, including pumpkin pie. 

#NHBPM






8 November 2012

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

3 November 2011

Thankful Thursday - I Am What I Am

Inspired by this post on Dave Hingsburger's blog, here is a list of guilty pleasures that I'm thankful for:


1. Coca Cola. I absolutely savor that first sip after it's been poured into my freezey mug. So cold and fizzy and sweet and *droooools*

2. Lolcats and Lolspeak.

3. "That's what SHE said!" *giggles* I hope I never outgrow snickering at accidental innuendos.

4. I have a giant teddy bear that I snuggle with when my husband isn't at home.

5. Lady Gaga. I heart her so much!

6. Flirting online with my trans woman friend. I'm 90% straight, but that girl is smoking hot.

7. The first five minutes of that head buzz I get after I take one of my painkillers. I hate the feeling once it lasts longer than that, which is why I try to avoid that particular pain killer. But if I have to take it, then I may as well enjoy the buzz a little, before I crawl into bed to sleep it off.

8. Audiobooks to sleep to at night. "Read me a bedtime story!" It has to be a book with no violent scenes or surprises, and read by a nice motherly or fatherly voice. Jane Austen books are perfect.

9. Putting my Kindle in a ziplock bag and reading in the bathtub.

10. Roleplaying games online with my online buddies.

11. Watching my senior dog flirt with her "boyfriend", our dog walker's chocolate lab one minute, and then have them trying to steal the other's treats the next.

12. Being fat. I was always super skinny, until I was nearly 30, to the point where concern trolls would try to intervene about whatever eating disorder they imagined I had. Finally my metabolism changed and I piled on the pounds, and it feels great to have padding all over now.

What are your guilty vices? Life's only a sham till you can shout, hey world, "I am what I am!"

7 October 2011

Thankful Thursday

I'm thankful that my dog's tail wags in her sleep. I hope it means she's having happy doggy dreams.

29 September 2011

Thankful Thursday

This edition is 'Thankful for x, even though y'

I just got back from my GP appointment, and I'm very thankful that he is compassionate and has never tried to deny the existence of any of my symptoms, even though there's very little he can do about them.

I'm thankful that the new ESA descriptors should make me eligible for the support group, and that my GP agreed with me, even though I still have to go through the ATOS assessment and might have to travel to their horrible office in another town to do it if they don't agree to a home visit (which they rarely do).

I'm thankful that my dog's daily dose of joint vitamins and anti-inflammatories has completely returned her to her previous frisky and happy state, even though it means she wants me to play with her more now and I can't.

I'm thankful that there are so many wonderful blogs and twitter accounts and books about chronic illness, even though I can't read as many as I want to.

I'm thankful that there is more research being done now about M.E., even though the hopes that were raised by XMRV seem to be dashed.

I'm thankful for the International Consensus Criteria, even though there will still be a fight to get it accepted by the NHS/NICE.

I'm thankful for webcomics, even though there are more awesome ones out there than I could ever read.

I'm thankful for Thankful Thursdays.

22 September 2011

Thankful Thursday

  • I'm thankful that when I got ill, I had disability insurance through my employer.
  • I'm thankful that I live in a place where I can get a taxi within 5 minutes, since I'm no longer able to drive.
  • I'm thankful that there are so many resources in this country for disabled people.
  • I'm thankful for living in an age where I can order most anything from my bed and have it delivered.
  • I'm thankful for http://www.patientslikeme.com/ which helps me keep records of my health. It has been so useful.
  • I'm thankful for feather pillows and memory foam.