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.

Day 29: Blessings

Pretty!

Day 29 – Thursday, Nov. 29
“If I could accomplish one thing (anything) in 2013 it would be…”
OR
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.

#NHBPM

 

Day 27: Somewhere

My view of the world

Day 27 – Tuesday, Nov. 27
“I bet you didn’t know….”
OR
“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.

#NHBPM

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?

#NHBPM

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

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

Day 18 – Sunday, Nov. 18
“I want to change THIS about healthcare…”
OR
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.

#NHBPM

Day 17: My strengths and weaknesses

Day 17 – Saturday, Nov. 17
My strengths and weaknesses list post
OR
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.

Strengths:

• 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.

 Weaknesses:

• 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.)

#NHBPM

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?
OR
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.

#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)

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.