13 July 2013

Tips for the dentist

Adrienne Dellwoo posted about going to the dentist with ME or Fibro. For me, the worst part is how sore my muscles get from sitting still for so long.  But I have some tips that help:

1. Definitely start with communication. Tell them you need them to be as gentle as possible with scraping, probing, etc.

2. Ask for a bite block to hold your mouth open rather than you trying to do it yourself. Take frequent breaks to have them remove it and let your jaws rest.

3. Bring a seat cushion and a neck pillow.

4. Take any of your as-needed pain medication before you go.

5. Plan for several days of rest afterwards.

6. Practice preventative dental care to try and avoid problems that will require extra dental work. If any of your meds cause a dry mouth, this puts you at extra risk for tooth decay, so be aware!

29 March 2013

#HAWMC: I'm writing for April

I did the 'blog post a day' thing in November, but it burned me out a bit. But I loved doing it.

For April's challenge, I'm going to aim for 10 posts in 30 days. I think I can do that.

And here are the prompts.

20 March 2013

Book Review: Tonight We Die as Men

Tonight We Die As Men: The untold story of Third Battalion 506 Parachute Infantry Regiment from Toccoa to D-Day (General Military)Tonight We Die As Men: The untold story of Third Battalion 506 Parachute Infantry Regiment from Toccoa to D-Day by Ian Gardner
My rating: 2 of 5 stars

I wanted to love this book, and parts of it I did. It certainly covers a lot of detail, with loads of personal anecdotes from veterans and from the civilians who encountered them. What it's missing is the big picture. Towards the end there's a line that says something like "The battle at Bloody Gully was the most important engagement for the 101st during the D-Day invasion" but it didn't explain why. I felt that way for most of the book. I knew what individual men were doing, but I couldn't quite put it into view as to what it all meant in terms of the war. It is fair to add that if I'd been able to see the maps (not legible on my kindle screen), I might have had better luck.

As a historical record, this is a valuable book. As a narrative, not so much. I don't regret reading it, but I doubt I'll ever read it again.

View all my reviews

8 March 2013

Book Review: A Plunge Into Space

I got this book from Singularity: Save the Sci-fi. If you're a fan of classic science fiction, a membership in Singularity is a worthwhile investment!

A Plunge Into Space
A Plunge Into Space by Robert Cromie
My rating: 3 of 5 stars

This book is not meant to be a comedy, but it's absolutely hilarious in its use of outdated tropes (no doubt cutting edge at the time it was written) and Victorian age prejudices regarding class, race, and sex. If you aren't a fan of classic sci-fi, I doubt you'll enjoy it. I am, and I did, but more as a curious historical artefact than as a story in its own right.

View all my reviews

1 January 2013

New Years Resolutions

Adrienne at About.com wrote a post about Setting Goals for the New Year With Fibromyalgia & Chronic Fatigue Syndrome. That reminded me that I wanted to put my goals in writing.

Health goals:
  1. My cholesterol is 6.5. My goal is to get it to 6 through diet rather than taking statins. The UK measuring units for cholesterol are different than in the US, but 6 is the line they want you to stay below.
  2. Lose an average of 1 kilogram a month. This is a very low goal, and even this will be hard. I can perform so little activity, and my drugs make me hungry all the time. 
  3. If I can't do number 2, I at least want to get my BMI down below the "obese" line. That would mean losing 2 kilograms in total.
Personal goals:
  1.  Spend time with my husband, every day, even the bad days. Make sure he knows how much he is loved.
  2. Try to get out of the house once a month for something that's just for us rather than a medical appointment.
  3. Acquire Canus Novus and make it part of the family.
  4. Get to the US for the summer trip that I missed last year.
  5. Post on this blog at least twice a month.
That's pretty much it. The list looks long to me, but I think the goals are realistic and attainable.

If not, well....

30 December 2012


Yesterday, we got a Motability car.

For non-UK readers, this will require some explanation. Due to my disability, I get some benefits from the government. If you get the right kind of disability benefit (high rate mobility component) and have at least a year remaining on it, then you can sign that benefit over to a car dealership in order to lease a car instead.

Until now, we'd gotten by with public transport and taxis, because it's a lot of money to sign away. And until recently, public transport and taxis were enough. But a few things changed.

First, we moved to a new town. In the old town, I could call for a taxi and it would be at the door in 5 minutes. Occasionally, if it were a busy time of day, it might take 10. In this town... well, 10 minutes is the minimum, and sometimes it's 20 or 30. Sometimes there isn't one available at all. So that is a problem. When every minute spent sitting up is a minute you'll have to pay for later, you don't want to spend some of those minutes sitting and waiting for a taxi after you're done at the doctor's and ready to go home.

Second, my husband's arthritis has gotten worse. He used to be able to walk into the town centre for mid-week shopping or various errands, but that's no longer an option for him. So we wanted the car for him to be in less pain. But also, it was getting to the point where it was cheaper to run a car than to not run a car.

We made this decision a couple of months back, but we had to wait until now because I didn't have a year left on my disability benefit. It was renewal time, so there was all of that paperwork to do, then mail off, then wait for weeks for an answer.

As soon as the paperwork came back, my husband called the car dealer and started the process towards getting us a car. I let him handle everything he was allowed to handle. The car would be in my name, but he's my designated driver. For Motability purposes, the car is for my use, but he can use it for anything that generally keeps the household running. He can't use it for running a delivery business on the side, but then again, I don't think most car leases would allow that. Anyway, both as the driver of the vehicle, and as the person who knows and understands (and cares about) cars, he was best suited towards making the decision about which car, which options, etc.

From the time we put in the order to the time we received the vehicle, was about three weeks. The dealer says it's usually about two weeks, but trying to do anything around the Christmas holidays is going to extend the time. The deal includes everything. Insurance, maintenance, breakdown service - all we have to pay for is the petrol. But even with petrol prices what they are, it's cheaper than taxi fare, and overall, we're going to be financially better off.

The process was smooth and painless, until it wasn't. The 'wasn't' was the part where I had to go to the dealership in person to accept the car and sit around for an hour and a half because they were cleaning the car. I have no idea what that was all about. I can understand the outside of the car getting dirty during transport to the dealership, but why would the inside have needed cleaning? I don't know. Had I been more alert and brainful, I might have said 'Er, we don't care, really, I'm in pain and want to go home.' But I didn't. So I got a bad case of Wheelchair Butthurt, and I'll be crashed out for a few days.

My husband loves his new toy. He went to the big car supplies store to get a phone bracket and de-icer and a sat-nav (heavily reduced in the after Christmas sales - so that part of the timing worked out for us) and has driven around a bit to get to know the car. He peeks out the curtains every so often to make sure the car is still there. He reads the car manual in his chair while I'm on the computer. It's all very cute.

The best part about the car is the options it gives us for getting a new dog. Canus Novus, we say, when referring to our prospective dog. My first dog had to be put down in September at the age of 13. We decided Canus Novus would have to wait for a bit. There's a wonderful park not far off, but it's down a very steep hill - not possible for my husband with his arthritis. The new car (Automobilus Novus?) has room in the back for both the wheelchair and a dog. I've been looking at dogs at the website of a shelter that's nearby. I hope we can go soon and meet some of them. Hopefully one of them will be Canus Novus.

So overall, I highly recommend the Motability program, for UK readers who qualify. But I wish they hadn't required a disabled person to get out of bed early on a Saturday morning to sit in a dealership and wait for a clean car to be cleaned just so they could say they handed it over to me rather than my designated driver. Blah.

15 December 2012

Me? Exercise?

When I saw the pain specialist, Dr Purple Hair, last month, she diagnosed me with fibromyalgia. She also said that one of the best therapies for fibro pain is exercise. Happily, she is aware that this is difficult. "When I tell patients that exercise will help, their reaction is 'Are you fucking kidding me?'" Reason number one that I like Dr Purple Hair: Appropriate use of expletives.

Since we're doing medication changes as well, I said I wanted to wait until the meds were settled before starting any sort of physical therapy. I also have some concerns about my heart, due to my high resting heart rate, and I want to make sure anything I do physically is safe for me.

However, I did think of something that I could do in the meantime - or rather, that could be done to me. My husband often offers me massages to help with the pain, but it occurred to me that a different sort of bodywork might help with the pain as well as help condition the muscles. So about a week or two ago, he started moving my legs for me. Rotate the ankle around, raise the leg, bend the knee, and so on. Basically the same sort of movements I'd do myself as part of a warmup for a traditional exercise routine, but in this case, he's supplying most of the energy to do the work.

I think it's been good for me, and at least doesn't seem to increase my fatigue any. He's done just a bit with my shoulders and arms, but since my shoulders remain my weakest joint, he doesn't do them every day.

I think the name for this is "facilitated stretching". I'll be telling Dr Purple Hair about it at my next appointment (likely in January) and we'll see if it can be incorporated into the exercise plans that she'll be recommending.

12 December 2012

Some people just don't get it.. - Imgur

Some people just don't get it.. - Imgur

When I moved and got a new GP, they switched my anti-depressant from a slow release formula to the standard tablets. Between that and the increase of my gabapentin (anti-seizure medicine for pain), I've been on a mental roller coaster. I'm just so glad that my depression is not breaking through much, and that I was able to switch back to the slow release version of venlafaxine.

Depression is a serious and life threatening illness with a stupid name that makes it sound like it's no big deal. Luckily, unlike CFS, it can be treated. If you think you are depressed, see a doctor as soon as you can. Don't be ashamed that you couldn't just 'snap out of it.'

30 November 2012

Day 30: Month's End

Day 30 – Friday, Nov. 30
Write about why you’re awesome

I started this month as a way to participate in NaNoWriMo without actually having a novel in my head or the wherewithal to write 50,000 words. (Or have I? I suppose I could paste all my posts into a single document and do a word count, but I don't think I have.) Instead of writing every day towards a novel, I would write a blog post a way and revive my health blog. I didn't know what topics I would write about, but I figured I'd find something.

On Day 3, I discovered the existence of NHBPM, and had a set of prompts to work with, and a whole community to support me. So that was great. I started out putting down in words some of my more philosophical thoughts about my illness. In Day 4: Already Broken, I wrote about my childhood cancer, and my mother's fibromyalgia. Day 5, I begged everyone that interacts with the chronically ill to Assume Good Faith. The post that was hardest for me to write, but also the most liberating, was on Day 8: Dear M.E.

On Day 9, I took a break from writing about health to celebrate the victories that gay people won in the November 2012 election.

On Day 13, I was diagnosed with Fibromyalgia. This diagnosis led to a decline in the length and quality of my posts - not so much from the stress of the news, which hadn't terribly surprised me, but because of the symptom flare that had followed. I had spent several hours out of bed to attend the doctor and the tender point pressure test was intensely painful.

In addition to the flare, I changed the dosage of one of my medication by doctor's advice. The medication change made me moody and irritable, and it combined with a general weariness of trying to write every day. I kept up with it because I didn't want to fail at the challenge after having gone on for so long. I feel like the rest of the month started to show a downturn in my outlook, but perhaps that's my imagination.

On Day18, I wrote advice to spouse carers. On Day 22, I wrote a Thanksgiving post. Day 25 was all about audiobooks. On Day 27, I wrote was was probably my saddest post: Somewhere. Yesterday I wrote about Blessings of being sick.

And today... is the end. 

I didn't recap every post here - just the ones I felt were the most interesting to me to write and to look back on. But I did actually stick it out. Even on the two 'get out of post free' days, I still posted something. I am very proud of myself for sticking it out.

But I'm really glad this is over! I don't think I could do a 45 day challenge. I'm ready for a rest. 

So what's the future for this blog?

First, I'm going to take a week off. Maybe a fortnight. I need it. Then, I'll be back, but not on a daily schedule. Perhaps once or twice a week? I haven't decided yet. But I want to keep this up. I want this record of my health journey and my marriage and my life.


29 November 2012

Day 29: Blessings

Day 29 – Thursday, Nov. 29
“If I could accomplish one thing (anything) in 2013 it would be…”
Write about unexpected blessings of your health condition? Or how being a patient / caregiver has changed you

  • Being wheelchair-bound means I can wear the pretty shoes rather than the comfortable ones.
  • Related: I no longer have callouses on my feet.
  • I get out of doing the dishes. What? That's a legitimate blessing!
  • I never would have discovered Buddhist meditation if I hadn't gotten sick.
  • I don't have to wake up to an alarm clock.
  • Commuting stress? Looking for parking? Not a problem - I surrendered my driver's license!
  • No yearly performance reviews.
  • I get to spend more time with my husband.
  • I've learned just how tough and badass I am as I face my continued frailty.
  • I'm here when my husband needs painkiller gel rubbed on his back.
  • We've started reading to each other. Yes, we could have done it when I was healthy, but we never had. It wasn't until other forms of together activity became too much that we settled on this.
  • Going bra-less most of the time.
  • Living slow.
  • Needing full time care from my husband means I can never doubt how devoted he is to me or how strong our marriage is.