I have not posted in a while

Monday Nov 21, I had a nearly pain free day. I was very careful not to overdo it.

Tuesday Nov 22 was the start of a flare. This one makes me want to sleep, all the time. I don't know what triggered it. I'm still in it.

I'd have more to say, but I'm too tired to think of it. I think I'll just go back to sleep.

Invest in ME Calendar 2012

I'm raising money for Invest in M.E. by selling 2012 calendars available to buy at Lulu. Invest in M.E. will receive £2 (or the approximate US equivalent) for each calendar sold. My dad donated the photographs, and I donated the spoons it took to format and prepare the calendar on Lulu's site. Lulu takes a commission from each sale, but I do not. Every bit that makes it into my hands will go directly to Invest in ME.

I haven't seen the finished product yet, so purchases are at your own risk until my copy arrives for me to assess the quality. But I was too excited to wait until then to post. Once I see it, I'll be asking everyone to order and spread the word. I know it's late in the year, and doing print on demand means the price is higher than I'd like for less profit than I'd prefer, but if only 50 calendars are sold, that'll be £100 raised, which is certainly more than I'd have been able to donate on my own.

This is the photo on the cover, and inside are lots of foxes, and a few other critters. I hope you like it.

Thankful Thursday - I Am What I Am

Inspired by this post on Dave Hingsburger's blog, here is a list of guilty pleasures that I'm thankful for:


1. Coca Cola. I absolutely savor that first sip after it's been poured into my freezey mug. So cold and fizzy and sweet and *droooools*

2. Lolcats and Lolspeak.

3. "That's what SHE said!" *giggles* I hope I never outgrow snickering at accidental innuendos.

4. I have a giant teddy bear that I snuggle with when my husband isn't at home.

5. Lady Gaga. I heart her so much!

6. Flirting online with my trans woman friend. I'm 90% straight, but that girl is smoking hot.

7. The first five minutes of that head buzz I get after I take one of my painkillers. I hate the feeling once it lasts longer than that, which is why I try to avoid that particular pain killer. But if I have to take it, then I may as well enjoy the buzz a little, before I crawl into bed to sleep it off.

8. Audiobooks to sleep to at night. "Read me a bedtime story!" It has to be a book with no violent scenes or surprises, and read by a nice motherly or fatherly voice. Jane Austen books are perfect.

9. Putting my Kindle in a ziplock bag and reading in the bathtub.

10. Roleplaying games online with my online buddies.

11. Watching my senior dog flirt with her "boyfriend", our dog walker's chocolate lab one minute, and then have them trying to steal the other's treats the next.

12. Being fat. I was always super skinny, until I was nearly 30, to the point where concern trolls would try to intervene about whatever eating disorder they imagined I had. Finally my metabolism changed and I piled on the pounds, and it feels great to have padding all over now.

What are your guilty vices? Life's only a sham till you can shout, hey world, "I am what I am!"

Thought for the day

But sometimes, of course, I just have to mine levels of patience I never knew *I* had. Then I remember that dealing with being disabled is a spiritual discipline and I try to get right with that.


-Rachel Cohen-Rottenburg

Are you fit to drive? Part 3

I pulled my driver's license out of my wallet and put it in the envelope to send back to DVLA.

It hurt more than I expected. I remember when I passed my test - I was on top of the world. When I was 16, I took a driving test in the US that was just basically just proving that I knew how to operate a vehicle. In the UK, driving tests are Srs Bsns. It lasts about an hour, and is bloody hard to pass. I had been driving for half my life when I came to the UK, but I had to spend a small fortune on driving lessons in order to pass the test. I knew someone who didn't pass until her 8th try.

Somehow I passed on my first. I had taken a trial test a week before and failed badly, so I didn't expect to pass. But I did. I was elated.

I don't like thinking of that me, who was healthy enough to run up the steps at the office where she worked to tell her friends that she had passed. I don't like to think of what's about to happen to her a few years from that moment.

So I won't. I'm on my way to the osteopath, so I'll drop this in the postbox on the way. And then I'm done with that thought.

Paperwork

I have an ESA50 form due by the 31st of October. This is to continue qualifying for Employment and Support Allowance benefit in the UK, the benefit that is given to people who are too ill to work. Because I was working before I fell ill, mine is called 'Contribution based', since there were contributions taken out of my paycheck all along for this purpose.

There's another form called Income based which is for people who weren't working before they were ill, but have low income. If you qualify for this, you get signposted onto other benefits that the Contribution based people don't get. I don't understand it. It's as if I'd be financially better off now if I'd been unemployed when I got sick.

So I sat up working on the form for about an hour, writing about how my illness affects me. I'm nowhere near done. Then I went to bed about 7pm and couldn't get up until 2pm. When I did get up, the world was swimming and everything hurt and all I wanted to do was go back to bed.

How do I prove I'm too ill to work, when I'm too ill to fill out the form?

Anger and me and M.E.

I have a webforum I spend a lot of time at. It's not a disability or health forum, and it's mostly populated by young people. High school and college age, sometimes younger. It's fun, and geeky, and I enjoy it. Sometimes we do Avatar Theme Weeks, where we change our avatars to all fit with a certain theme. People who are artistically inclined make avatars for those who aren't. It's all very fun and friendly and generous.

One of the weeks under discussion was 'Work Week'. I can't work, so I wasn't sure what I would do. I already have a lot of avatars, and when a theme week comes up, I try to find one of them that can be shoehorned in. So for work week, I decided, I would use this one: 

The drawing was made to represent a character from a story rather than me - really, Mom, despite that post yesterday, I don't swear like a sailor! - because when I remember my last job, I remember how much anger I had bottled up at the way I was treated. After posting this as my choice and saying why, I received a message from another member. "If you don't mind me asking, what work did you do previously?"

In answer, I wrote this:

I was in insurance, processing paperwork. The actual work I loved, and most of my coworkers I got along with great, but there were a few in management who were bullies, played favourites, and had a few people who were targets. I was reprimanded for having a few pieces of paper in my trash bin instead of the recycling bin, for leaving a box of tissues on my desk at the end of the day in supposed violation of the clear desk policy, for going to the bathroom too often. Never anything substantive. Never anything to do with the quality of my work. Since it was financial, the work quality could be judged objectively, by concrete numerical measurements, and so there was nothing they could say about it. So they had to look for petty things. But nothing they said or did was the kind of thing I could make a legitimate complaint about either.

The worst of the bullying happened around the time I got the virus that was the trigger for my M.E., and I'm sure the stress from that worsened the illness. There is evidence that the most important factor in the level of impairment from M.E. is how much rest the person takes in the very early stages, and those early stages were me going back to work for a few days, facing more bullying and stress, then getting sick again and having to take time off, several times, before I was finally not able to go back at all. I believe I would still have M.E. if I'd been in a healthy working environment, but I probably would be less impaired.

Wow... I haven't let myself think of those days in years. How the hell did I put up with it for so long?

 That was the first time I'd really considered how the stress from that time has left a mark on me.  I try to picture the me who would have resulted if I'd been able to take the full rest that I should have, with no demands of any kind put on me. She would probably be only forty or fifty percent impaired, instead of seventy percent. She'd still be able to walk short distances, and wash her own hair. She might even be showing improvement and able to consider going back to work a few hours a week.

And the transition to 'she' just happened as I wrote, because I can't see myself as her. This is me. I live in a bed, with occasional jaunts to the toilet or the comfy chair. I would like to be able to do the things that other person does, but I can't. I'm not her. I'm happy the way I am. If I were able to walk, I'd be happy that way too.

For all the anger I felt then, about how I was treated at that job, I don't seem to feel any anger about the long term effects it has left. I'm not sure why. Maybe it's too new. Maybe I used up all my anger yesterday - after I 'rageblogged', I had three or four more things happen that angered me. It was just an all around miserable day. But I suspect the reason I'm not feeling angry is because there's a dam holding back so much anger and rage that it would sweep me away if I let it all out at once, and it's going to have to be trickled out in small doses over months and years to be safely drained.

When I got my M.E. diagnosis, my two dominant emotions were relief that I finally had a name for what was wrong with me, and fear because the name was the name of something that didn't have a cure. But I'd be lying if I denied that there was another emotion in there, much much quieter than the other two, but able to be heard: jubilation that I wouldn't have to go back to work under those managers.

I ought to be very angry about that.

Are you fit to drive? Part 2

Now that I got the rant out of my system, here's what I meant to blog today. Part 2 to this post.

Since my scanner won't behave, you don't get to see the documents the DVLA sent me. But basically they told me I had two options.

1. Surrender my drivers license voluntarily.

2. Undergo a medical assessment to see if I am fit to drive.

The benefits of surrendering vs doing the assessment and having it revoked, is that later, if I apply to have my license reinstated, I can drive while the application is considered. Perhaps because of a demonstration of good faith? I'm not sure. They refer to Section 88 of the Road Traffic Act 1988.

Since I already  know I'm unfit to drive, I'm taking option 1. But I went ahead and looked through the medical assessment form to give a summary for those who might be interested. (Of course, this applies to the UK only.)

Part of it is obvious: name and address of GP, what meds do you take, do you have episodes of confusion or cognitive impairment. Then there's a section to talk about whether you are physically capable of operating a vehicle. If you are not, but you could with adaptations, then there's another form to fill out to explain what types of controls you need to operate a vehicle. In this case, your license would have various codes put on it to show that you are legally entitled to drive a vehicle modified in this way.

It seems fair to me. The disabled should have every human right that able bodied people do, but being legally entitled to drive when not fit to do so isn't a human right.

I worked damn hard to get that license though. Even though I haven't driven since I got M.E., it's going to hurt sending it away.

Rant

(Dear Mom and Dad,  if you are reading this,
I know you still see me as an innocent little girl, so you might want to skip this post. I kind of say bad words in it. I hope you aren't too disappointed in me.
Love, me)

(Dear everyone,
This is a rant. Expect ranting.
Love, me)

Photo Day 4

Photo Day 4 - My favourite mug/cup

This is one of the two identical cups I drink from every day. Note the bendy straw - VERY IMPORTANT! Bendy straws are essential for being able to drink from bed! The giant handle makes it easy to grasp and less likely that I'll drop it, and it being made of plastic means when I do drop it, I won't break it. If only it had a lid to help avoid splashes and spills it would be perfect.

This is a double layered mug with freezey stuff in between the layers. If it comes out of the freezer, and I pour Coke into it, it makes the Coke all wonderfully slushy. Bliss! Absolute bliss! Ice cold Coke without diluting the wonderful fizziness! Since I own two of these, there is always one in the freezer, ready for more Coke.

But I'm on a diet. Only one Coke a day. =(  So after the Coke is finished, I dry off the condensation and refill the cup with lemon water. I don't care if the lemon water is cold or not, so I just use this cup all day. I've been adding a little salt to the lemon water to help increase my blood pressure, and trying to drink more water overall. Low blood volume can be a problem for M.E. patients. But ugh... I hate having to get up and pee so much!


So, my favourite mug. It's rather plain looking, but I love it.    ♥

Thankful Thursday

I'm thankful that my dog's tail wags in her sleep. I hope it means she's having happy doggy dreams.

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
DVLA
Swansea
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.

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.

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?

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

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.

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. 

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

Read more 30 things here.

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
Oo-ooh-hoo-hoo-hoo-hoooo
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
Oo-ooh-hoo-hoo-hoo-hoooo-ahh-haa

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

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.

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.

Product recommendation: Laptop gel cooling mat

If you're bedridden, a laptop can be your lifeline to the world. Of course we're always told that we aren't supposed to use laptops on soft surfaces, or they'll overheat.

This is where a cooling pad comes in. I've tried the ones with a usb fan built in, and I couldn't handle the extra weight and especially the extra noise. I kept looking for a solution, and saw the Newlink Cooling Mat. It has crystals inside, which absorb heat until they eventually turn liquid. Then you just set the mat aside until the gel hardens again into crystals.

No more overheated laptop!

I was skeptical, but desparate, so I ordered one off ebay. And to my surprise, it actually worked! I run RealTemp to make sure I know when my laptop is getting too hot, and it generally runs about 10 degrees cooler (in Fahrenheit) when it's sitting on the mat. It even keeps my computer cool during processor intensive activities, such as when I occasionally play Civilization or have too many windows open.

In fact, it's been so useful, that I'm about to order another one, so that I have one to use when this one has all turned to gel and needs to cool down.

I imagine these are available in the US as well, but it's too hard for me to search for US products when Google keeps diverting me to UK sites. But if you search for 'Laptop gel cooling mat' you should be able to find it. It's a great product and inexpensive, and keeping your laptop cool will prolong its life.

*The link goes to Amazon UK, and any purchases you make will benefit ME Research UK.

Fundraising and Advocacy Fatigue

One of the (many many) cruel things about this disease is that fund-raising and advocacy for this illness has been largely left to the patients.

We're bedridden and might not have the energy to get up and brush our teeth, but we feel obligated to comment on an inaccurate or vilifying newspaper article. We're all struggling financially because of being unable to work and having to hire help for simple household tasks, but we scrap up a little bit to donate when there's a fund-raising event. We want hope, so we try to read scientific articles that are full of technical information that is difficult to understand, when we sometimes have brainfog so bad that we can barely read at all.

At some point, we have to remember to step back. That point will be in a different place for everyone. But we have to remember, we are patients. Our own personal health must come first.

Today I deleted the bookmark to the Vivint Gives Back project and was hit with a huge wave of relief. Don't get me wrong, I'm immensely grateful to Vivint Gives Back. But every day I had to remember to vote. Every day, 3 clicks, one to open the link, one to login, one to vote. It wasn't much. Hardly any effort at all. And yet it was a relief to be done with it.

We want to help others who are ill. We want to be advocates. We want to believe that we can write that blog post or Tweet or newspaper comment that makes someone believe us, that changes minds. We want to believe that the few pounds we can scrape up to donate will make a difference. We want to believe that we'll find something in the scientific journals that we can take to our GP and turn into a useful treatment.

And now this post is turning into something I didn't expect, as I realize something. I have been reading How to Be Sick by Toni Bernhard and tweeting some of the passages from my Kindle. And earlier I tweeted this passage. It's about how, as the Buddha said, "the origin of suffering is desire". It's the desire for things to be other than how they are that brings us suffering. And that's what we have to watch for when we engage in these advocacy activities. We must try to avoid getting so attached to them that they hurt our health and, more importantly, our mental well being. We have suffered enough.

There was another prophet who said "The poor will always be with us." He did not mean that we should not care for the poor, but that it was permissible to set that struggle aside sometimes, and care for our own physical and spiritual needs. If we need to take a break from ME/CFS advocacy for a time, the fight will still be waiting for us when we return.

Apparently my illness is very invisible today

I called the landlord about a leak. He can't get anyone out till next week, so he describes a workaround that he wants me to do, which would require me being able to reach a small pipe just below the gutter.

Me: "I have no way of reaching that."

Him: "You can climb on a chair or something, right?"

Me: *after a moment of stunned disbelief* "No, I can't. I use a walking stick because of my poor balance. There's no possible way I can safely climb onto a chair."

Perhaps like this? Is this what you had in mind, Mr Landlord?

For nearly two years, every time my landlord has come over, he's seen me using the stick. Just outside my front door, on the way to the gate, the footing is treacherous and there's a place where there would be a one meter fall onto concrete if I were to have a bad fall. I'm very conscious of that, so I always use my walking stick when I go to the gate. Even if I'm having one of my best days and don't feel at all unsteady on my feet, I'm not willing to risk it. I think of it as a seatbelt - wear it every time, and you'll have it when you need it.

Not only that, but I told him I was disabled when I first left work. Of course, when he asked why, and I said "Chronic Fatigue Syndrome" he said, "Yeah, I probably have that too." So I guess expecting him to make the leap from 'regularly uses walking stick' to 'probably shouldn't try standing on a chair to do gutter repairs' was too much to ask.

I'm just glad I didn't have brainfog today, or I might have been too fuzzy to argue and ended up in the hospital.


*Photo by quinn.anya used with a Creative Commons license

A Message From Vivint

Vote! Vote! Vote!

The Whittemore Peterson Institute has a very good chance to win the Pacific region, but we need to keep voting every day.

My ME/CFS in Pictures

Welcome to Patients for a Moment:
Wordless Wednesday

My wonderful family helped to decorate my walker with nail polish.

Caring for A Pet (when you can barely care for yourself)

Keeping a pet when you're disabled isn't easy. They still have to be cared for. They need food, exercise, and veterinary care, and when you're barely able to take care of yourself, this is hard.

 My baby

The food is the easiest part for me. I get it delivered from VetUK and any order over £19 is free shipping. I would use this service even if I were still healthy and had a car, because I was never able to lift 15 kg!

Exercise I have to pay for: £100/month for 3 hours a week. Included in this is teeth brushing and cleaning the poo out of the yard. I found my dog walker by googling 'dog walker' and the name of my town. These will usually be small family run businesses, but even if they don't have a website, they'll often take advantage of sites like yell.com or other online classifieds and listings. If this doesn't work, you can try looking in the local paper or asking your vet or other dog owners you know.

Veterinary care was the most difficult. My dog used to love going to the vet, but then she needed an operation to have a lump removed. After that, she associated the vet with pain, and would start shaking as soon as she got there. Add to that the physical stress that I have in leaving the house, and the fact that I'm not physically capable of holding her lead when she decides to pull... yeah, it wasn't fun. The gentleman who walks her is happy to take us to the vet as well, doing the dog wrangling while I do the decision making and payment, but it was still always a major ordeal.

But today I had the first visit from a mobile vet, who runs her entire business by making house calls. Because she's not based in my town, it was an extra £40 travel fee, on top of the cost of the consult and medication, but I consider it money well spent. Turtledog got along with her brilliantly - being examined by a vet in her own home doesn't trigger her fears. To her it was just someone else giving her attention! I will still need to take her to the local vet if there is any kind of emergency care needed, but for routine visits, the mobile vet only needs to come out once every six months, and she can prescribe medications by email in between visits.

I could add up the cost of pet ownership, and then the additional cost that being disabled adds to pet ownership. But I can't possibly calculate the value she brings to my life. So I make cuts in other parts of the budget, and consider it money well spent.

Do you have a pet? How has your illness affected them?

Kindle and ME/CFS

I used to be a voracious reader, finishing most books in one or two sittings, even if it meant staying up all night and being bleary eyed at school the next day. When I entered the working world, I tried to be more responsible, and only book binge on weekends, but I still slipped occasionally.

Then I got sick, and it got difficult to read. I would read the same page over and over before I could extract meaning from it. I would get aching muscles from holding a paperback book open. Instead of binging books, I was nibbling them.

For about a year, I used a wonderful service provided by my local library, where I could request books online or by phone and volunteers would bring them to me. If I didn't request specific titles, they would just gather a few based on criteria I had given them. But it was getting more and more difficult to read. The last book I got from them took me six months to finish.

Then my parents bought me a Kindle for Christmas. If you're a reader with ME/CFS, I can't recommend it enough!

• It's lightweight. Lighter than a paperback, and doesn't have to be held open. I can hold it and turn pages in one hand, and easily switch to the other hand when I get tired. 
• It remembers. No more losing my place. Well, it's still possible to lose it, but it doesn't happen as often. And I can do a search for a phrase I remember to get back to where I was.
• It holds all the books I want! When my brain isn't up to the history books that I love to delve into, I can switch over and re-read The Hobbit for the hundredth time. When I want to look up something in a reference book, it's right there. No more pile of books by the bed.
• Instant dictionary. I can easily look up any word that brain fog is preventing me from understanding.
• Instant delivery of books. For someone who is housebound, this is wonderful. When I have the spoons to read a book, I can buy it and start reading right then.
• Easy bathtime reading. One of the best things I can do for my symptoms is a long epsom salts bath. And the best way for me to stay in the bath, is to have something to read. I seal the Kindle in a ziplock bag, and can read in the tub with no worries about drips or splashes.
• Adjustable text size. When my eyes get tired, I can just make the text size bigger. Try doing that with a paper book!

My experience has been with the Kindle, but my mother owns a Nook Touch, which is very similar. If you are considering both, I recommend watching some of the youtube reviews that compare both devices to help you decide which is best for you.

So often we think of disability equipment as being something from a specialist store, but it can also be something that's easily available to everyone. I would have enjoyed a Kindle as a healthy person, but as a sick person, Kindle has kept books in my life when I would have mostly had to give them up.

Recipe: Lemon Water

Photo by ex.libris

• 1/2 lemon, sliced
• 1 litre of filtered water

Put water in pitcher. Put lemons in water. Leave the lemons in the pitcher when you pour yourself a glass, and you can keep topping up the water for two or three days before you need to toss the lemon slices and make a new batch. Store in the fridge. So refreshing!



Yes, this is far too simple to be called a "recipe", (and even so simple, I have to get someone else to slice the lemons for me) but it's my main weapon in my battle against my Coca Cola addiction. I haven't seen any weight loss yet, but I've at least been consuming less soda, and that can only be for the good. ☼

Losing Weight

Since I got sick, I have gained about 7 to 10 kg (15 to 20 lbs). I don't know exactly, because I never bothered weighing myself back then. I'm 156 lbs now, or 71 kg. Not obese, but definitely overweight, and at the point where the extra weight is uncomfortable to carry around. So I'm trying to lose weight without being able to exercise, and without having the energy to prepare as much as a bowl of cereal some days.

Yes, this will be a challenge. My dream goal is to get down to 65 kg / 145 lbs. My realistic goal is to get below 70 kg and stay there. If I gain any more weight, I will need all new clothes, which means spoons expended on shopping and ordering and returning what doesn't fit and... ugh. DO NOT WANT!

So the posts tagged with 'diet' will be what I'll be trying and learning from along the way. Join me on this journey, won't you?  ☼

Before and After: A Story of Two Journeys

Several years ago, I had to go to London for something involving immigration. I walked to the train station, got on the train and travelled two hours during the morning commute. I'm far enough from London that I had a seat, but all the seats were filled up during the first half hour of the journey. When I arrived in London, I got lost a few times before I found the office where I was going. Once there, I had to wait in a queue of about an hour to get in, then, once in, sit and wait for my name to be called. By the time my name was called, it had been four or five hours since I'd left home. I had come prepared with loads of paperwork, but once in the office, they asked me for a document I didn't have with me. Without it, the appointment couldn't continue. I was disappointed, of course, but not overly so. "Can I come back tomorrow?" I asked. "Oh certainly," I was told. And so, except for the part where I got lost, I did the whole thing again.

 Here's a journey I took a few weeks ago, for comparison:

I knew I needed to go to the post office on Thursday, so on Wednesday, I rested the entire day in preparation. On Thursday, I prepared for the journey in stages. I checked that everything I needed to take was in my bag - cash for the taxi, debit card, mobile phone, parcel to mail, keys. Took a break and rested. Had some breakfast. Rested. Got partly dressed. Rested. Finished dressing. You get the idea. When I was finally ready to go, I called the taxi, put the dog in her kennel, and headed outside to wait. (I could wait inside, and the taxi driver would come ring the bell, but that always makes the dog go crazy to hear the bell when she's already in her kennel, so I go outside. I hope that won't be one of the compromises I end up having to make one day.) Since I knew I'd have to wait in a queue, I took my walker so I could sit down. I had to pull it up three steps to get to the back gate. The front gate has a dozen steps, so taking the walker that way is impossible. The taxi trip was fast. The journey is one that a healthy person could walk in about a half hour. The driver helped me with the walker, putting it in and out of the boot. This is something that would be impossible for me to do. Once at the post office, the queue wasn't very long - maybe 5 minutes at longest. There's a busier one in the center of town where I've experienced wait times of twenty minutes or more. Even so, five minutes means I needed to sit and rest, which was the main reason I took the walker. When I was finished, I called for a taxi to return home. Getting the walker down those few steps at the end was harder than moving it up at the beginning, simply because I was so tired. I went inside, tended to the dog, and then collapsed in the bed where I slept for a good three hours out of sheer exhaustion. If someone had told me I'd have to go back out to the post office the next day, I wouldn't have laughed at them. Laughing would have required too much energy. The journey had taken just over a half hour.

Now I recall that trip to London with something between awe and bitterness. It's as if I once swam the English Channel, or climbed Everest, and then breezily decided to repeat the experience the next day.

And... well... this is where a conclusion would go, but I don't have one. There was a time when I took trips to London. Now I do not. And life goes on. ♥

Discrimination Against Service Dogs

A story from Bensalem, Pennsylvania.

 Dr. Priya Punjabi argues that it is her right to determine who enters the property and that a large animal could scare or upset her patients.

...

Punjabi, who said she is afraid of dogs, added that her request was polite.
“We simply asked him to step outside,” she said. “I have my rights and my phobias, too.”

We still have so far to go.

Source

The Compromises We Make

I did something today I thought I'd never do. I bought microwave popcorn.

I love popcorn. Love it love it love it. But I like it popped on the stove, preferably in coconut oil. Microwave popcorn I always considered an abomination. But because of the effort of standing by the stove, I haven't made popcorn in months. Even after social services got me a perching stool to assist me in the kitchen, it is still a large effort hurdle to get across, compared to three minutes in the microwave.

It's not bad. I didn't think of adding seasoned salt to it, or shredding cheddar cheese over it, this time, but that will probably help. (Since I need to lose weight, I probably should continue to forget the cheese option.)

I've made compromises, but this is a line I thought I've never crossed. But what the hell, it's a tasty line. ♥

Tramadol

My last GP visit, a few weeks ago, I asked for some help with pain relief. He has said I can take up to 8 paracetamol (aka Tylenol) a day with no problems, but I worry about liver damage. So I've been limiting it to 6, and there are days when I need something more. So he prescribed Tramadol, a mild opioid.

On the one hand, I feel noticeably better when I take it. In addition to pain relief, it also acts on serotonin and norepinephrine, so there's probably several things going into the 'feeling better' result I'm getting.

On the other hand, it depresses the libido and inhibits orgasm.

Since I've been ill, I've found it difficult to make decisions. My mind just keeps going round and round and whatever part of it used to jump in and actually choose seems to be no longer working. I don't want my sex life broken, but on days when I was in a lot of pain, I probably wasn't in the mood for sex anyway. But if it makes me feel better, I might want to take it regularly. But sex makes me feel better too. Round and round and round my brain goes.

Not sure where this one will stop. I see my GP again on Sep 1, but I think I'll wait till the visit after that to raise the issue, having given the drug more time in case it's one of those things where the side effect goes away when you're used to it.

Adapting and Finding Help

When I first got sick, I kept trying to do things myself. This resulted in FAIL. I tired myself out, and most of the stuff didn't get done. I've learned since to evaluate activities carefully.

• Does it need to be done at all? A lot of stuff that used to be essential in my life has gone away. Some of it is missed, some not.
• Can it be done easier? This sometimes can mean getting equipment that helps in performing the activity, such as a tumble dryer vs a clothesline. Or simple things like putting a chair by the bathroom sink so I can sit while I brush my teeth. Removing clutter and arranging your home to make day to day life easier is also a possibility.
• Can it be done online? I do the bulk of my shopping online, including groceries. In the UK, the major grocery stores all deliver, and there is a milkman with free delivery who can top up between visits. I use the internet to buy clothes, books, household products - pretty much everything. It is very rare that I need to physically go and purchase something. I also try to do as much of my communication online as possible as I find it much easier to type than to speak.
• Can it be done by someone else? Since becoming sick, I've had to hire someone to do the household cleaning and someone to walk the dog. There are mobile hairdressers who will come to your house to cut your hair, mobile vets who will make house calls, care services who can assist in personal care that you can no longer do for yourself. I'd also put in this category using a cab if you can no longer drive safely and are unable to use public transportation.

I've started a list of links on the side of the resources I have found, in my three years of illness, to be the most helpful to me. Those that are specific to the UK, I have flagged as such. I hope other people will gain as much from them as I have.

The Scorn of the Healthy

It happened today. In a forum that I frequent, someone reported that they had great difficulty registering at the site because the captcha image was particularly hard, and the form would reset if you got it wrong. The person concluded by saying the visually disabled would find it much more problematic.

The first response, which was from a fellow poster on the site and not site admin: "I didn't find it difficult." The OP (original poster) said "That's like telling someone in a wheelchair that because you don't find the steps difficult, they shouldn't."

That brought the recriminations on in earnest. People demanded that the OP describe their "disability" (sneer quotes included). They pointed out that if he/she could make long posts, they shouldn't have had difficulty with the registration form. I posted to say it was really nobody's business what the OP's state of health was, and was shouted down. "They made it our business. This is a vital piece of information."

I would be remiss if I didn't point out that a few people, in addition to me, did speak up in the OP's defense, and that none of the people who were being rude were affiliated with the forum's administration. The admin person was perfectly respectful and posted to say that he was somewhat limited by the forum software but that he would look into it.

It's still so discouraging though.

Getting Sick

"The world has teeth, and it can bite you with them any time it wants." Those words, from The Girl Who Loved Tom Gordon had always felt true to me. But I think the quote should read that it will bite you with them. Because none of us escape its bite.

It started in November 2908, with a sinus infection. It didn't really start there. I knew there was something wrong with me. There were signs before, for years prior. But let's keep it simple and say it started then. Because though the signs were there before, November 2008 was when it grabbed my life in its teeth and shook it hard.

I had a sinus infection while I was visiting the family. I went to the walk in clinic, got antibiotics, felt better, flew home, went back to work. I was only there a day or two before the infection came back and I had to leave work again. More antibiotics. Then back to work. It was very stressful. There were employee evaluations - god, it was so awful that even typing those words brings it all back. My chest gets tight, tears start to well up. I wasn't sick any more. The infection was over. But I was so stressed out that I had to leave. I got a letter from the doctor to sign me off for stress for 2 weeks. But I should have known it was more than that, because the day I walked out of the office, I called a cab instead of taking the ten minute walk home.

The 2 weeks turned into longer, but I was sure I knew the answer. It was my depression. I had been managing it for years with antidepressants, and every so often I had to change the drug. SSRI poop-out they called it. So I'd get a new drug, go through the adjustment period, and I'd be back at work.

The drugs were changed. I was referred to some stress management workshops and went to about 4 of them. The others, I was too tired to make it. But it was okay. Fatigue was just a symptom of depression, and my depression was getting better.

And then, my depression was gone. I could imagine going back to work. I even had a meeting with the woman from HR about how to manage my return to help alleviate my stress. But I was still... so... tired...

And it was just getting worse.

It was at my GP appointment in May 2009 that he first mentioned Chronic Fatigue Syndrome. The diagnosis felt like a punch in the gut. I had read about it, and even though the symptoms fit me to a T, I had clung to the first line: "Have severe chronic fatigue for at least six months or longer with other known medical conditions (whose manifestation includes fatigue) excluded by clinical diagnosis." Since I had depression, and depression includes fatigue, then I couldn't have CFS.

Except of course I did. And I knew it was true as soon as I heard him say it. I knew I had been deluding myself. And I knew it had no cure.

But even while most of me was in shock and grief, there was also relief. Now I know what it is. Now I know why all the work I'm doing to get over the depression isn't giving me more energy. Now I'm free to stop trying to get back to work and get back my old life. Because now I know my old life is gone.