29 September 2011

Are you fit to drive?

This is a sensitive subject, and one that most of us don't want to face. But we should. M.E. is a neurological illness, and many of its symptoms can affect our fitness to drive.

These are the UK guidelines. I've marked in purple the classifications that may apply to M.E. patients.
DVLA states that it must be informed if there is:
  • An epileptic event (seizure or fit).
  • Sudden attacks of disabling giddiness, fainting or blackouts.
  • Severe mental handicap.
  • A pacemaker, defibrillator or anti-ventricular tachycardia device fitted.
  • Diabetes controlled by insulin or tablets.
  • Angina while driving.
  • Parkinson's disease.
  • Any other chronic neurological condition.
  • A serious problem with memory.
  • A major or minor cerebrovascular event.
  • Any type of brain surgery, brain tumour or severe head injury involving inpatient treatment at hospital.
  • Any severe psychiatric illness or mental disorder.
  • Continuing/permanent difficulty in the use of arms or legs which affects your ability to control a vehicle.
  • Dependence on or misuse of alcohol, illicit drugs or chemical substances in the past 3 years (do not include drink/driving offences).
  • Any visual disability which affects BOTH eyes (do not declare short/long sight or colour blindness).
The last time I drove was, perhaps ironically, when I drove to the walk in clinic to be seen for the sinus infection that triggered my M.E. I was in the US at the time, driving my mom's minivan. In the UK, we haven't owned a car for several years. I don't want to surrender my driver's license though, because it's useful as a form of ID. I don't like having to use my passport for that.

But I was recently told that I probably was required to do so. I asked my GP today, and he said I was required to inform the DVLA, and they would make the decision. So I just sent them an email.
Drivers Medical Group
SA99 1TU
Fax: 0845 850 0095
Email: eftd@dvla.gsi.gov.uk
Telephone: 0300 790 6806
(Monday to Friday, 8.00 am to 5.30 pm and Saturday, 8.00 am to 1.00 pm)
Of course, this is just the legal responsibility (which will vary between countries and US states). But there's more to consider.

What is your moral responsibility towards other people on the road, as well as to your own friends and family and caregivers? Every time you get behind the wheel of a car, you're accepting the responsibility to operate a dangerous piece of machinery at high speeds. Can you really say, honestly, that you should be doing this? If another driver were in your current condition, would you want them headed towards you in the other lane at 60 mph?

No matter how tempting it is to drive, think of how you would feel if you put someone in the hospital. What if it caused them to live with chronic pain or disability for the rest of their lives? What if you made your own condition significantly worse? What if someone died?

Should all persons with M.E. be banned from driving? No. But they should all - every one of them - have a plan for what to do if they are being the wheel of a car and have an episode of severe exhaustion, brainfog, or any other condition that makes it unsafe to drive. Make a list of people you can call who can come and pick you up. Include the numbers for taxi companies in case you can't get hold of a friend, and include the local police. You can also contact local Designated Driver organizations designed to assist drunk drivers and see if they are able to help people who should not drive because of a medical condition. Put this list in every vehicle that you are ever likely to drive, and be prepared to pull over and use it rather than think 'I'm only two miles from home. I should just push on. It won't be too bad...'

Oh, and if you are driving without a mobile phone, don't! The technology exists, it's cheap, and it's really stupid for someone with a chronic illness to be without a way to call for help.

Everyone with a chronic condition that may impair their fitness to drive should consider both their legal and moral responsibilities. Even if you are able to drive now, make your plans for what you will do in an emergency situation if you are away from home, and decide how you will know when you should give up driving for good.

Thankful Thursday

This edition is 'Thankful for x, even though y'

I just got back from my GP appointment, and I'm very thankful that he is compassionate and has never tried to deny the existence of any of my symptoms, even though there's very little he can do about them.

I'm thankful that the new ESA descriptors should make me eligible for the support group, and that my GP agreed with me, even though I still have to go through the ATOS assessment and might have to travel to their horrible office in another town to do it if they don't agree to a home visit (which they rarely do).

I'm thankful that my dog's daily dose of joint vitamins and anti-inflammatories has completely returned her to her previous frisky and happy state, even though it means she wants me to play with her more now and I can't.

I'm thankful that there are so many wonderful blogs and twitter accounts and books about chronic illness, even though I can't read as many as I want to.

I'm thankful that there is more research being done now about M.E., even though the hopes that were raised by XMRV seem to be dashed.

I'm thankful for the International Consensus Criteria, even though there will still be a fight to get it accepted by the NHS/NICE.

I'm thankful for webcomics, even though there are more awesome ones out there than I could ever read.

I'm thankful for Thankful Thursdays.

22 September 2011

Thankful Thursday

  • I'm thankful that when I got ill, I had disability insurance through my employer.
  • I'm thankful that I live in a place where I can get a taxi within 5 minutes, since I'm no longer able to drive.
  • I'm thankful that there are so many resources in this country for disabled people.
  • I'm thankful for living in an age where I can order most anything from my bed and have it delivered.
  • I'm thankful for http://www.patientslikeme.com/ which helps me keep records of my health. It has been so useful.
  • I'm thankful for feather pillows and memory foam.

17 September 2011

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?

16 September 2011

Photo Day 3

Since this is supposed to be an illness blog and not a photo blog, I decided to make a new rule for myself about the Photo a Whenever project: All photos have to be taken from, in, or around the bed, which is where I spend most of my time.

Day 3's subject was in my nightstand drawer. I always keep munchies there.

Day 3 - anything edible

15 September 2011

Photo Day 2

Day 2 - a pet: This is Turtledog, my bestest friend.
Sometimes I get out of bed for her when I wouldn't get out of bed for myself.

14 September 2011

Photo Day 1

Day 1 - free choice to begin with: My glasses arrived today
I saw the 'Photo A Day' challenge on Little Mouse Lily's blog and thought it looked like fun, except that there's no way I can do a photo a day. So I'll follow the challenge topics, but make it a photo-a-whenever.

Today, I finally got some glasses that fit me and that I can wear in bed while looking at my laptop. Win! I'll write a post soon about how to shop for glasses on the internet, because I've made just about all the mistakes possible.

I like plastic framed glasses for the look, but for practicality when reading at weird angles, rimless works best. And the larger the lens the better. Also I learned when I was shopping for glasses that I have a big head. 

13 September 2011

30 things about M.E. and me

1. The illness I live with is: Myalgic Encephalomyeletis (ME/CFS)
2. I was diagnosed with it in the year: May 2009
3. But I had symptoms since: Nov 2008
4. The biggest adjustment I’ve had to make is: Being housebound and 80% bedbound

5. Most people assume: I don't know about most people, but the 'common knowledge' in the press is that ME patients spend all our time being angry, making death threats to researchers, and refusing treatment because we don't want to admit we have a psychological disorder. They don't realize that we'd be perfectly happy to be treated psychologically if psychotherapy worked. It doesn't.
6. The hardest part about mornings are: The dark fog  
7. My favorite medical TV show is: I'm not able to watch television. Moving pictures and sound at the same time is too overstimulating for me.

8. A gadget I couldn’t live without is: My laptop. It's my connection to the world.

9. The hardest part about nights are:
The vivid nightmares where my parents (who are wonderful, supporting people) are being hateful to me and disbelieving of my illness.

10. Each day I take __ pills & vitamins. (No comments, please) 10 pills (4 different drugs), 2 vitamins

11. Regarding alternative treatments I: tend towards skepticism. Massage and osteopathy I find helpful if I have a good practitioner, but it's only symptom relief.

12. If I had to choose between an invisible illness or visible I would choose: I would choose an illness that was believed to be real and had genuine biomedical treatment options. I don't care about visible or invisible.

13. Regarding working and career: I haven't been able to work since I fell ill in November 2008. I tried two or three times between November and January to go back to work, but I couldn't manage.

14. People would be surprised to know: that I'm happy.
15. The hardest thing to accept about my new reality has been: The scorn heaped upon ME patients in the press. It hurts more than the pain, more than the helplessness, more than the cognitive disabilities.
16. Something I never thought I could do with my illness that I did was: Start this blog. I thought my health would need to improve a lot more before I'd be ready to speak.
17. The commercials about my illness: I've never seen any.
18. Something I really miss doing since I was diagnosed is: Just getting out of bed and deciding to impulsively go and do something. Now, leaving the house requires several days of planning and preparation at minimum, and several days of recovery.
19. It was really hard to have to give up: my self-identity as 'the smart one'. I'm not smart anymore. I have to struggle to think, to communicate, to find words. My memory is so poor that if you ask me what I did last night, I probably will answer 'I don't know'.

20. A new hobby I have taken up since my diagnosis is: Is Twitter a hobby?
21. If I could have one day of feeling normal again I would: Oh god, that would hurt too much - to know it was going to end again after a day. I think I would turn it down.

22. My illness has taught me: what it's like to enter the secret world of the disabled.
23. Want to know a secret? One thing people say that gets under my skin is: Don't worry, I'm sure you'll get better soon.
24. But I love it when people: believe me.
25. My favorite motto, scripture, quote that gets me through tough times is: "You know this is the way it is. You were born, and so are subject to change, disease, and ultimately death. It happens differently for each person. This is one of the ways it's happening to you." - Toni Bernhard
26. When someone is diagnosed I’d like to tell them: That's why I started this blog. I summarized all my advice to the newly diagnosed in: "I Have ME/CFS: Now What?"

27. Something that has surprised me about living with an illness is: How much a person can lose and still feel real.
28. The nicest thing someone did for me when I wasn’t feeling well was: The nicest would require me to remember, which is hard. So I'll say the most recent, which was my mom ordering me feather pillows after she read this post.
29. I’m involved with Invisible Illness Week because: being ill is my community now.  
30. The fact that you read this list makes me feel: Validated

12 September 2011

A little peculiar

I had a fall today. I was holding a packet of pecans and looking to see if they were beyond their expiration date. I took a step at the same time and completely lost my balance. Fortunately, there was a chair behind me so I was able to catch myself, but I injured my calf somehow.

My balance has been getting worse. I suppose bipedal locomotion requires my full attention now. Or maybe I should ask my GP for forearm crutches. Or maybe I should tie a cold lavender pack around my leg and have a nap.

What's Up?
Reworked lyrics for Spoonies

3 years of illness and my life is still
Trying to get up that great big hill of hope
For rehabilitation.
I realized quickly when I knew I should
That the NHS is made up of this
Brotherhood of shrinks
For whatever that means.

And so I cry sometimes when I'm lying in bed
Just to get it all out, what's in my head
And I, I am feeling a little peculiar
And so I wake in the morning and I look
Outside and I take a deep breath
And I get real high
And I whisper with the top of my strength
What's goin' on?

And I think hey-yeah-yeah-yeah, hey yea yea
I say hey! what's goin' on
And I say hey-yeah-yea-eah, hey yea yea
I say hey! what's goin' on

Oooh, oo! ooh-hoo-hoo-hoo-hoo
Oooh! ooo-aah-hoo-hoo-hoo-hoo
Oo-ooh-hoo-hoo-hoo-hoooo Whats up?

And I try, oh my God do I try
I try all the time
In this situation
And I pray, oh my God do I pray
I pray every single day
For revolution

And so I cry sometimes when I'm lying in bed
Just to get it all out what's in my head
And I, I am feeling a little peculiar
And so I wake in the morning and I look
Outside and I take deep breath
And I get real high
And I whisper at the top of my strength
What's goin' on

And I say hey-yeah-yea-eah, hey yea yea
I say hey! what's goin' on
And I say hey-yeah-yea-eah, hey yea yea
I say hey! what's goin' on

And I say hey-yeah-yea-eah, hey yea yea
I say hey! what's goin' on
And I say hey-yeah-yea-eah, hey yea yea
I say hey! what's goin' on
Oooh, oo! ooh-hoo-hoo-hoo-hoo

3 years of illness and my life is still
I'm trying to get up that great big hill of hope
For rehabilitation

8 September 2011

Thankful Thursday

(Shamelessly stolen from GlasgowChris at Sick and Tired)

I am thankful for my mum, who read my pillow post and ordered me some feather pillows from Amazon.

I am thankful for my husband, who reads everything he can about ME to try and understand it.

I am thankful for my dog, who is always full of joy.

I am thankful for technology that keeps me connected to the world: the internet, a wireless laptop so I can get to it from bed, forums and twitter and blogs to allow me to connect to other sick people who understand, ebooks, being able to Twitter from my Kindle in the bathtub

I am thankful that, personally, I have met with more compassion than scorn, even though there is still plenty of impersonal scorn in the press.

I am thankful that I am still happy.

6 September 2011

The Dark Fog

Sometimes I wake up but I don't wake up. It feels like my brain is full of thick cotton and my muscles are full of poison. Everything hurts, but it's mitigated a little by the fact that all I seem able to do is sleep. When eventually, I get out of bed because I have to pee, it's like walking on the deck of a ship during a heavy storm. I cling to walls and furniture to keep from falling. I don't eat anything because the effort of chewing and swallowing is too much. I crawl back in bed and cling to my pillow and float in a dark fog, barely conscious.

When the fog rolls back a little, I sometimes wonder how I managed. I sometimes thing about the people who have it worse, who need feeding tubes and round the clock nursing care. I sometimes worry that someday it will get that bad for me.

But mostly, I go back to sleep.

The Importance of Pillows

When you spend most of your day in bed, pillows are important. Like, super important. And I have so many. The long body pillow that I hug when I sleep on my side. The microbead pillows that help when I have an achy place. The V shaped pillow for sitting up in bed. And of course the all important pillow under the head.

And for some reason, I can't get that last one right.

The pillow I'm using now is several years old and very flat. It needs replacing. So I looked on Amazon trying to find a good replacement. I bought it. It came in a huge box - you'd think they'd have sucked the air out of it or something. But no. Anyway, it's too thick and solid for me and hurts my neck. Though it works fine for support anywhere else. Strike one.

The next pillow I purchased, I was actually out in town. I had hired a mobility scooter for the day from the wonderful people at Shopmobility. I stuck to my limit of three errands - eye appointment, pound store, and Wilkinson's. At Wilkinson's they had two pillow choices. The problem was, both pillows were in airtight plastic bags, so you couldn't squeeze them to figure out the texture. You'd just be moving the air around inside the bag. So I picked one, essentially at random. It had a firm core in the center and was very uncomfortable. Strike two.

My next chance was Asda. I order my groceries from them, and they have a few home items available that can be ordered along with the groceries. Three or four types of pillows. No real description. Again, picking at random, and I got another one that was too firm. Strike three.

I guess I need a pillow that's really soft and not too thick, even though I'm a side sleeper. And I have no idea how to find one without just continuing to throw money at shops and gamble that the pillow will feel right when I get home.