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.


28 November 2012

Day 28: Playing the card again

Day 28 – Wednesday, Nov. 28
Interview a community member!
Write about how you deal with mean comments / trolls / snakeoil / or bullies

Nothing to say on these prompts. Besides, it's a friend's birthday, so I'm gonna be chatting online rather than blogging.

In lieu of a post, have a silly.

This is so me...


27 November 2012

Day 27: Somewhere

My view of the world
Day 27 – Tuesday, Nov. 27
“I bet you didn’t know….”
“If I could go anywhere…”

If I could go anywhere, then I would go somewhere. It doesn't have to be Machu Picchu or the Taj Mahal or Aluru. I would go to the seaside, that's half a mile from here. I would go to the cinema to watch a movie with my husband. I would go for a nature walk. It wouldn't have to be a long walk. Maybe just a half hour. I would go to the train station and buy a ticket to London for a day trip. I would go to the shop on the corner and buy milk when we've run out. 

I spend my life in bed, and the closest I get to seeing the world is from the windows of the taxi as I go to doctor appointments. My wheelchair doesn't let me in to many places, and even when it does, it is so uncomfortable, and sitting up makes me so tired. Sometimes, I just ache to see the world. I'll sit at the bedroom window and look out at the street and the flats nearby. There isn't much of a view. Sometimes there's a cat in one of the windows, or someone walks by with their dog. For all that, it's a far better view than I used to have out my window, in the old basement flat.

If I could go anywhere, I would go somewhere. Just somewhere.


26 November 2012

Day 26: One does not simply....

Day 26 – Monday, Nov. 26
Interview your health
Make a chart / meme / poster and write about it

There isn't much to say about the three memes I've made for the sidebar here. If you've lived with CFS/ME, Depression, or Fibromyalgia, you know how often people tell us to just get over it. As if these weren't real diseases, with actual biomedical effects on the body. Unfortunately, it isn't that easy.

I'm lucky that Depression can be successfully treated, as I consider it the worst of the three diseases here. Not only is it the worst to suffer through, but it is the most deadly of the three. I have been taking anti-depressants for over ten years now, and unless a cure is developed, expect to be taking them for the rest of my life. I am very grateful that there are so many excellent pharmaceutical products available to treat depression, as well as psychological therapies.

It's my experience with Depression that makes me wish that CFS/ME was a mental illness like so many people seem to think. If it was, then I would use all the tools in the mental health arsenal to treat it. After four years since I first fell ill, I would have it in remission by now, if it was really a mental illness.

Fibromyalgia is my newest diagnosis and one I'm still learning to deal with. There seem to be more medical options for treating pain than there are for treating fatigue. One of them is to increase my dosage of gabapentin, which I'm doing now. The dosage increase is really doing a number on my mood, making me highly irritable. It should pass in a few days. It's worth it because it already seems to be lessening the pain. Neuropathic pain, which is the sort of pain caused by Fibromyalgia, can't just be treated by painkillers, because the nerves are simply not responsive to them. They have to be handled in a different way, and it is common for anti-seizure medicine to be used instead. It's complicated. I'm so grateful for Dr Purple Hair who seems to know all about nerve pain and how to treat it.

I guess in keeping with the "One does not simply walk into Mordor" theme, I would class Dr Purple Hair as one of my Fellowship of the Ring, along with my husband and my family and my copy of "How to Be Sick" and all the other people and tools who help me cope with a life of being chronically ill.

25 November 2012

Day 25: The human voice

I don't have anything to say about today's prompts, so instead, I'm writing about audiobooks.

I love to read. My mom says I taught myself to read when I was 2. I don't remember that, but I do remember trying to read after bedtime by the light that came in under my bedroom door. I devoured all the books we had in the house, to the point where once, when I was perhaps 8 or 9, I got hold of a murder mystery book that was well above my age level! I had picked it up expecting the normal Nancy Drew or Hardy Boys mystery, where jewels might get stolen but nobody actually gets killed! That book (A Stranger is Watching by Mary Higgins Clark) traumatised me, but I couldn't put it down until it was finished. I highly doubt my mother or father knew I had it, or they surely would have taken it from me.

I used to read fast. I couldn't stand to put down a book before it was finished. Now, things have changed. If I finish a book in one night, I'm quite likely to push myself into a flare. It's easy to think that if the body is inactive, we're conserving spoons, but brain activity burns calories just like muscle use does. Reading can be tiring. I know I've read too much when I realize that my eyes are scanning the page, but my brain isn't parsing the meaning of the words. 

Enter audiobooks. Listening to someone read a book slows the experience down. It makes it possible to close your eyes and really focus on the material being read. It makes books accessible for people who are unable to read for themselves. It is also a wonderful way to experience books even if you aren't disabled in any way. Unfortunately, audiobooks are also expensive. Except when they are free.

What, free? Yes! There are three ways to get free audiobooks. The first is librivox.org, a website where volunteers record books that are in the public domain. You can find over 6000 works there, in different languages. You won't find the latest bestseller, but so many beloved classics are there. I like Jane Austen to listen to at bedtime.

But what if you want to hear the latest bestseller? Then you have two options. The first is your local library. Even if you can't get there, they may have a service to bring materials to disabled people in the community. 

But the third option is my favourite. It's to get someone you love to read to you. Or if you feel well enough, read to them. Some of my best times with my husband are when we curl up on the bed together at night and he reads a chapter or two to me from one of our favourite book series.

There's just something magical about the human voice. I love it. Don't you?

24 November 2012

Day 24: #ListOf3

Day 24 – Saturday, Nov. 24
Write a TV episode of your favorite show that features someone with your condition. What do you want people to know?
“If I had more than 24 hours in a day…” (Or unlimited spoons or funds)

I don't watch enough television for the first topic, and the second would just hurt too much to write. So I went back to previous prompts and found a topic I haven't used yet.

Write a #ListOf3 Things that you’re thankful for / excited about / or inspired by

I'm thankful for: (Since I wrote about thankfulness two days ago, I'll make this more challenging by choosing three things that weren't mentioned in that post.)
  1. Silly internet pictures. They make me happy.
  2. Television subtitling. It makes it possible for me to sometimes watch television and actually follow what is going on.
  3. Doctor Who. Pretty much the only television I watch, except for the cooking shows that my husband watches that I peer in on.
 I'm excited by:
  1. The Hobbit movie. I want to see it in the cinema in a few weeks. But if that doesn't work out, I'll at least get to see it on DVD before long, and it looks like it will be amazing.
  2. Rituximab. I know that even if this treatment pans out as the treatment for M.E., it will still be years before it's available to me. I try not to dwell on it and get my hopes upp. But I want it to be true.
  3. Next summer's trip to the US. I had to skip a year because of moving in 2012, but I look forward to going in 2013!
I'm inspired by:

I struggled with this question for some time, before I realized that... I don't really feel "inspired" by things. There are people and things that I admire, but inspire? It just didn't feel right. So I looked up the definition for "inspire".
Inspire verb (used with object)
1. to fill with an animating, quickening, or exalting influence: His courage inspired his followers.
2. to produce or arouse (a feeling, thought, etc.): to inspire confidence in others.
3. to fill or affect with a specified feeling, thought, etc.: to inspire a person with distrust.
4. to influence or impel: Competition inspired her to greater efforts.
5. to animate, as an influence, feeling, thought, or the like, does: They were inspired by a belief in a better future. 

And that's my problem. Everything about the word suggests action. If a person or idea inspired me, then it would animate me or influence me into doing something. All of my action, all of my 'doing', is devoted to protecting what little there is of my health and maintaining my ties with friends and family. All of it. There is nothing for inspiration to do. So it doesn't.

But since that's a sad note to end on, here is a silly internet picture:


23 November 2012

Day 23: Nudism is the answer

Probably half of my clothing fits like this.
Day 23 – Friday, Nov. 23
What’s something your doctor taught you or you taught your doctor?
Clean out your fridge or closet in written form. What’s in there? How does it reflect your personality?

What's in my closet? If I'm honest with myself, I know that most of my clothing, I'll never wear again. Most of the clothing falls into one or more of the following categories:

1. Too small. The combination of being mostly bedridden and taking medication that tends to increase the appetite has not been good for my weight. I'm bigger than I've ever been, and most of my clothes no longer fit.

2. Work clothes. I've still hung on to some of my business clothing. I know it's unlikely that I'll ever work again, and if I do, the chances are slim (haha) that I'll ever be the same size as that clothing. I keep thinking 'But I should keep at least one nice suit just in case...' In case what? In case I suddenly get summoned to a job interview for a job I couldn't hold? In case I want to look professional for a doctor visit where I might have to strip? What am I thinking?

3. Pretty but uncomfortable. Allodynia is the name for when sensations are interpreted as pain that should be neutral. It's common for fibromyalgia patients to experience pain from their clothing. Underwire bras, tight fitting waistbands, rough fabric - any of that can be painful. One night, my allodynia was so bad, the bed sheet against my foot felt like sandpaper. I've gotten rid of most of my uncomfortable clothing, but some of it is too pretty for me to let go of. I think of how much I'd like to look nice wearing that thing again.

I have hoarding instincts, inherited from my grandfather. He probably would have turned into one of those horror stories you hear about, of people dying trapped in a home full of clutter, but fortunately, he loved travel and nature enough to keep on the move. I've also spent a lot of my life on the move, and my hoarding instinct is somewhat offset by that. When you have to pack up your possessions and haul them somewhere, you value them less.

And yet. And yet. I look at my clothing (mentally, as I am too tired today to get out of bed and open the wardrobe doors to look) and wonder what I'm holding on to. Why I tell myself I've accepted my illness, but haven't accepted that I'm not going to wear most of that clothing again. 

I don't really know the answer. But maybe soon I'll ask my husband to help me make some more space and send some more of that clothing to charity.

22 November 2012

Day 22: Thank you

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


21 November 2012

Day 21: I really love technology

Day 21 – Wednesday, Nov. 21
Create a new technology related to health
Write about mental health

New technology is great, don't get me wrong. But what about more uptake of the technology that already exists?

Why should a person as feeble as I am have to go out to the doctor? Why can't I do a consultation via skype? Why weren't my NHS medical records transmitted electronically to my new GP when I moved cities, instead of it taking six months? At least the NHS is in the process of enabling electronic prescription management, though that hasn't happened yet where I am. How about text messages reminding me that my prescription is about to run out and offering me the option to text back 'repeat' or 'cancel' depending on whether I want to continue taking that medication?

But okay... let's work with the theme and see where we can go. But not with any new ideas. I read a lot of science fiction, so there are plenty of wonderful things that other writers have thought of. We just need someone now to invent them.
  • Memory chairs that mold to the form of the person who sits in them. Especially for doctor's waiting rooms!
  • Beds with low-gravity (or zero gravity) so you don't have achy places on whatever side you sleep on. (Larry Niven: The Ringworld Engineers)
  • The ability to transfer my entire consciousness to a young, beautiful, strong body with SmartBlood and other enhancements. (John Scalzi: Old Man's War)
  • The ability to 'gland' various chemicals to keep my neurotransmitters perfectly in balance. (Iain M. Banks Culture series)
  • Teleporters, so I can go places without the pain and fatigue of travel.
  • Hoverchairs instead of wheelchairs - that would make it much easier to get places that claim to be accessible because they "just" have one or two steps.
  • Household robots that can do the chores.
  • Vulcan mind-meld to allow my doctor to UNDERSTAND MY PAIN! 

20 November 2012

Day 20: No regrets

Day 20 – Tuesday, Nov. 20
“A health moment I regret…”
Write about alternative treatments / regimens / medicine. What do you support? What is crazy?

I'm 2/3 of the way through the month, and now I'm feeling pretty worn down. Not just from trying to keep a daily writing schedule, but also because of my fibromyalgia diagnosis a week ago followed by the inevitable post-doctor-visit flare.

When I think of health regrets, I mostly think of little things. Like last week at the doctor appointment, the doctor asked if I'd like to stay in my wheelchair or move to a regular chair. I should have said "Actually, can I lie down on the examining table while we talk? It will help me a lot to be horizontal." Had I done that, I wouldn't have been so shattered at the end of the visit, and my tailbone wouldn't hurt so much right now from prolonged sitting a week ago. Then there are the times when I'm just starting to feel better after a flare and instead of hoarding those spoons for recovery, I spend them right away on some activity that keeps me right there on the edge. But all of these are small, day to day regrets. I don't really have any that stay with me long.

Sure, I could have tried harder to find a more knowledgeable doctor when I was first diagnosed, but where would I have found the energy for that? Or I could have figured out sooner that my fatigue wasn't caused by depression, but was something else. But how would I have known that? Depression was familiar to me, and M.E. wasn't.

Mostly I think life is too short to spend time regretting the past. I mean, what's the point? I have better things to do with my spoons.


19 November 2012

Day 19: ... and so soon we are gone

Day 19 – Monday, Nov. 19
Questions I have for for other patients
Write about: Life and Death

I've read several horrifying tales in the news recently about people in NHS hospitals being put on the Liverpool Care Pathway, an protocol for giving palliative care for patients in the last hours or days of life. The scary part is that hospitals have financial incentives to use this pathway, and too often, families are not consulted. Patients have their files marked 'Do Not Resuscitate' when that was not the decision they or their families had made about them.

It sparked me into looking at the procedures for making an advanced medical directive, in case I end up in a situation where medical decisions are being made on my behalf. It seems that my right to ask the hospitals not to resuscitate me is enshrined in law, but that there doesn't seem to be an equivalent legal form that says, "Hey! I want to live! Fight for me, dammit!" I'm not saying it would be wrong to disconnect me from life support if I'm brain dead or if the chance of ultimate survival is low. If that time comes, I trust my husband or whatever family members are there making the decision, to do what their best judgement says is right. I simply do not want strangers to make choices about my life in order to meet a quota.

I intend to talk to my GP about it and have it put into my medical records that I value my life. I will value it if I'm in a dark room unable to bear noise or light. I will value it if I'm in a hospital or nursing home. I can't imagine any situation where I would consciously choose euthanasia for myself. One day I will die, and I hope that it happens in a way that causes the least amount of suffering for everyone. But as long as I can, I want to live. And my husband and I have agreed that we will fight for each other, as long as there is hope.

Life is good.


18 November 2012

Day 18: Advice from a patient to a spouse-carer

Day 18 – Sunday, Nov. 18
“I want to change THIS about healthcare…”
Write about your advice for someone caring for a patient with your condition

To the spouse who cares for a patient with M.E. or Fibromyalgia:

Be gentle.

Touch can be healing. Massage is often the best thing for pain. Sometimes just laying your hands on can help.

Except when we're so over-sensitized that they can't bear to be touched. Try not to feel rejected when that happens. It isn't personal.

Be willing to turn off the tv and radio and everything else and just keep a quiet house on the bad days.

Let your spouse comfort and care for you when they can. We still want to feel like a genuine partner in marriage.

Sometimes it's just easier if you make the decisions, like going ahead and running the bath rather than asking 'Would a bath help?' Sometimes it's infuriating to be denied our own choices. Every patient will have a different threshold for this, so you'll have to learn where that point is for yours.

Don't be surprised when we suddenly goes from seemingly fine to crashing. You can try and learn the patterns and try to catch it in advance, but sometimes there's just nothing you can do.

Find out where the medication is and how to administer it. Know how to reach the doctors. Be prepared for the Really Bad Crash before it happens.

Don't blame yourself.

You'll have to be creative as a couple to keep the romance and sex alive. There are lots of ways to give one another pleasure besides traditional intercourse. Explore them to find what works for you.

When pushing a wheelchair, always make sure the brakes are on before your patient gets in or out, or before you let go of the handles. Doubly so if there's a slope.

Communication is vital. Marriage and caring is a difficult combination. Don't let the caring destroy the marriage.

Talk slowly. Wait for answers. It takes us longer to think than it used to. Don't try and discuss serious things on a bad day or when there's limited time.

Look for joy and appreciate it whenever it appears.

Care for yourself too. Remember the airline instruction about putting your own oxygen mask on before assisting others.

Be gentle. I can't stress this enough. Not just with us, but with yourself, and with the world.

17 November 2012

Day 17: My strengths and weaknesses

Day 17 – Saturday, Nov. 17
My strengths and weaknesses list post
Health Playlist. Make a playlist for your health community

I had to get my husband to help me with this post, because I'm not always the most introspective person. He's wondering how I can be an introvert and not introspective, but those aren't necessarily tied together. I simply don't spend a lot of time trying to "find myself" or whatever. I am simply ... me. I don't really think too much about what that means. So when I'm trying to think of my strengths and weaknesses, I can come up with a few, but I feel like I need a second opinion. So here goes.

  • Imagination and creativity. 
  • I lose my temper easily, but I don't stay angry. I don't hold grudges. 
  • I like people. I'm tolerant of ideas and behaviours and allowing people to do things that I think are silly or even stupid. I'm glad everyone doesn't like all the same things I do. 
  • My husband says I'm loving and loyal, and not just to him. I don't know if my family will agree since I only keep in touch with them by Facebook. But I do love them, very much. I'm just not very good at demonstrating it. 
  • But my family itself? That's a strength. I've gotten a long way because of coming from a strong foundation in life. I'm pragmatic. 
  • I'm accepting. Life is what it is, you know? I'm okay with being fat, with being sick, with being peri-menopausal, with being on anti-depressants. It's just my life.
  • Honesty, my husband says, though that's a weakness too, as I can be 'inappropriately honest' (which is code for 'tactless and rude'). 
  • I'm smart. Not as smart as I used to be. Fibro and M.E. eat the brain capacity and memory, even when it isn't an especially foggy day. But I was lucky to start off smart so that I still have a bit left.
  • My spirit? Tough. I know I have the soul of a fighter, even if I'm in the body of an invalid.
  • My husband says I have a smile that can light up a room. *blush*
  • My husband. He's my rock.
  • My temper - it burns hot and fast. 
  • I get frustrated easily. There are certain things that I seem to have compulsions about - broken tools, lost things - that I have had to actively train myself to try and let go when they happen or I'll go on and on and grind myself into a ragey, anxious mess. 
  • Making decisions. It uses spoons, so I get angry when I'm asked to make small ones that don't matter. (I shouldn't get angry so easily. I wonder why temper keeps coming up in this?) 
  • My husband just gave me one of those fake weaknesses that you say on job interviews "You're too hard on yourself." He insists that it's true. I guess he's right. He usually is.
  • My body. That's pretty weak. Literally.
  • My husband. He's my temptation. (He's worth it.)


16 November 2012

Day 16: The Sleeping Statue

The Sleeping Statue from the Lost Gardens of Heligan.
Day 16 – Friday, Nov. 16
Create a comic strip about your health / life / community
Use a picture or video to inspire a post

Sleep is my aspiration and my prison. I lie awake some nights, wriggling and trying to get comfortable, to find some position that gives me relief of pain and allows me to try to let go of some of my tension. When I finally sleep, I have vivid dreams. Sometimes they turn to nightmares. The nightmares are worse, but either way, I would love to find a way to turn down the volume and saturation on my dreams. They exhaust me, or so it seems. Perhaps I would have been exhausted anyway. Unrestful sleep is a typical symptom of both M.E. and Fibromyalgia. 

After a few years of sleeping whenever my body asked for sleep, and not bothering to keep a schedule, I am doing things differently now. I go to sleep when my husband does, around 11pm or midnight, and most nights I seem to sleep through to about 9am. I try to have a morning nap and an afternoon nap. By following this schedule, my few hours awake are of higher quality. I can think clearer, and I feel more "myself".

But still, I sleep so much. I feel like I'm sleeping my life away. Perhaps one day the ivy will grow over me, enclosing me in greenery. Maybe then my dreams would turn green and peaceful.


15 November 2012

Day 15: Show Me Your Teeth

Day 15 – Thursday, Nov. 15
Why healthcare companies (or healthcare professionals) should use social media
Nominate someone for a Health Activist Award bit.ly/haawards12 & write a post about why you nominated them!

I don't know any Health Activists, and I don't really have any opinions about healthcare companies and social media. So I went back to a previous day and chose one of the prompts I didn't use on Day 2:  

Write about the weirdest thing about your health
It's my teeth. 

Sometimes they hurt, in a way that makes me think 'Oh no, I really need to go to the dentist.' Then a few days later, they'd be fine. Later, weeks later maybe, they'd hurt again. This went on for years before I finally made the connection. My teeth were my equivalent of the migraine aura.

Now I know when my teeth start to hurt, to reach for the rizatriptan rather than looking for the dentist's phone number. It's a useful symptom, but it's pretty weird.


14 November 2012

Day 14: Playing the Card

Don't we all wish...
Day 14 – Wednesday, Nov. 14
“My life is a reality show.” Write characters, plots, the set, and why people should watch
Advice for dealing with negative feedback in your community

I sometimes watch reality shows, but I would never ever be on one. Just... ugh. No way. And I've never really had negative feedback from my blog. So I don't have anything to say on that. 

I looked over the bonus prompts and the unpicked prompts from previous days, and though I could think of things to say on many of them, I knew I couldn't actually turn any of them into a post because of how much I hurt today and how brain fogged I am. So in the absence of the card above, which I'd much rather be playing, I'll play this one instead:

I hope I feel better tomorrow.

13 November 2012

Day 13: So today I went to the Pain Clinic

Day 13 – Tuesday, Nov. 13
Book report. What’s your favorite book and how can you tie it to your health or life?
Write about something taboo

I hadn't decided which topic to pick today, but then I went to my first assessment at the Pain Clinic and I can't really think about anything but that.

The Pain Clinic

 First of all, going to the Pain Clinic hurts! For someone who is not used to sitting up for longer than 20 minutes at a time, having to sit up for a 20 minute taxi ride, half an hour in the waiting room, 45 minutes for an appointment, then an hour getting home... well, it was Not Pleasant. My tailbone hurts so much, and I know I'm going to have a crash tomorrow and possibly for several days.

However, I got important information today that I needed, which is that I have Fibromyalgia in addition to M.E. The pain doctor was a wonderful woman with white hair that had purple streaks in it, so I will call her Dr Purple. She didn't talk down to me, took me seriously, and actually explained things chemically that were going on with my medications. She then had me stand up (with my husband spotting me in case I lost my balance) and did the tender point test for Fibromyalgia. 

Later, he asked me how it felt, because he could see that some of them were very obviously painful. The closest description I could give was "Kind of like that sort of blinding pain feeling you get when you stub your toe, and it just sort of sweeps pain through your whole body and you feel like your vision just kind of goes all white for a second. Only it wasn't a sharp sort of pain like that pain, and it didn't keep hurting once she released the pressure." That's not a very good description. Especially since now I'm feeling aching in those tender points now, a few hours later.

How does it feel having a new diagnosis? A little sad. A little relieved - I don't think doctors understand how much it means to patients to have an actual, reliable diagnosis, even if the diagnosis is for something unpleasant and incurable. But mostly no different. I talked to my former GP about Fibromyalgia a few years ago when pain became one of my regular symptoms, and his response was "You probably have it, but there's no point in making an official diagnosis, because there's nothing we can do for it anyway." So I'm not at all surprised by it (though I am surprised by the intensity in the tender point reaction). What does surprise me is that apparently there are medications that can treat Fibromyalgia, so my old GP was either full of shit or too lazy to keep up with changes in medical treatments. He has since retired, so possibly the latter. 

The medications I'm already on are closely related to the drugs most often prescribed for Fibro pain, but the dosages are all wrong. I'm going to start with slowly changing doses or possibly changing the medications themselves to their chemical cousins, but only one change at a time. There are also non-medical treatment possibilities, but the appointment was running over (we were in there for 45 minutes, which is extremely generous for an NHS appointment!) so she didn't really go into those, and besides, one change at a time.

Next step is that she will write everything up clearly, with the diagnosis and her recommendations, and mail a copy both to me and my regular GP. Then my GP will start adjusting my medication dosages. I'll continue to see the Pain Clinic for more adjustments and recommendations over time.

And so we'll see what happens.

12 November 2012

Day 12: Patients Like Me

Day 12 – Monday, Nov. 12
Call BS on something. What’s something that is just ridiculous?

“My favorite health app / device / game is…” and review it

Patients Like Me wins, hands down. This is a website where patients of all sorts of disorders - AIDS, Fibromyalgia, Depression, and many many more - can track their symptoms over time. It has loads of nifty features, such as the "Doctor Visit Sheet" which prints out a report that you can show to your doctor or use when you need to give records for insurance or benefits. In addition to symptoms, it lets me track my weight, menstrual cycle, medications, and lab tests of all sorts.

Instant Me

Whatever your illness, it is usually recommended to keep a patient diary, but this is rarely easy to do. When your illness is one that causes fatigue, and you barely have enough energy to take care of your own basic needs, it's even more difficult. My symptoms are severe, but I have managed to use Patients Like Me regularly, with only a few gaps, since April of 2010. This makes it an invaluable record that I would not have if it were not very easy to use.

Pain and Fatigue Rating Scale
One factor that some might consider before joining is that the data is open. The only privacy settings are to make it open to everyone or open to site members. There is no private to everyone. This is because of the site's ethos, which is "The Value of Openness". They believe in connecting patients with one another, as well as collecting the medical data of hundreds of patients to help in medical research.
  • How does PatientsLikeMe make money?

    We take the information patients like you share about your experience with the disease and sell it to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services.  Except for the restricted personal information you entered when registering for the site, you should expect that every piece of information you submit (even if it is not currently displayed) may be shared with our partners and any member of PatientsLikeMe, including other patients.  We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data. 
    By selling this data and engaging our partners in conversations about patient needs, we're helping them better understand the real world medical value of their products so they can improve them. We are also helping companies accelerate the development of new solutions for patients.
    PatientsLikeMe is a for-profit company (with a not-just-for-profit attitude).  Every partnership we develop must bring us closer to aligning patient and industry interests. Our end goal is improved patient care and quality of life.

If you want to speak to other people who have your symptoms or illness, you can easily connect to them in various ways. The most straightforward is the patient forums, but there are also more creative ways like connecting with other patients that have your illness and have used a certain medication or had a similar set of symptoms as yours.

Unrefreshing or Poor Sleep Report
Patients Like Me is free, but I love it so much that I'd pay for this functionality if it suddenly turned into a pay site. It's an amazing site, and I'm very glad to have it.