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!

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....

Motability

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.

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 26: One does not simply....

Day 26 – Monday, Nov. 26
Interview your health
OR
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.

#NHBPM

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?
OR
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.

#NHBPM

Day 20: No regrets

Day 20 – Tuesday, Nov. 20
“A health moment I regret…”
OR
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.

#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 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

OR

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.

#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