Day 21: I really love technology

Day 21 – Wednesday, Nov. 21
Create a new technology related to health
OR
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! 

#NHBPM

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

Day 19 – Monday, Nov. 19
Questions I have for for other patients
OR
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.

#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

M.E. and the NHS

I just filled out a survey  about neurological care in the NHS, and these are the comments I left in the final field. So frustrated. So tired of not being treated as if I have a real illness.

My GP is very compassionate, but the ME/CFS clinic is not. I left my last appointment with the specialist in tears because of her insistence on me not becoming dependant on mobility devices that I believe will improve my quality of life and allow me more independence. I know far more about my illness than my GP or anyone else I have seen, and my GP told me that ME/CFS was considered a low priority disease in the local Trust. Nearly everything I've gotten from social services, benefits, etc, I've had to do on my own initiative at a time when I'm not even able to wash my own hair. My GP's surgery has a nurse assigned to manage people with asthma and assist them with all of their health and lifestyle needs. I believe there is one for diabetes as well. Why isn't there someone assigned to people with chronic conditions, who can work as their advocate and assist them in getting the care and help that they need? I shouldn't be the person in my GP's surgery who knows the most about my illness. That terrifies me. How are they going to care for me if I get too weak to speak for myself?