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 27: Somewhere

My view of the world

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

If I could go anywhere, then I would go somewhere. It doesn't have to be Machu Picchu or the Taj Mahal or Aluru. I would go to the seaside, that's half a mile from here. I would go to the cinema to watch a movie with my husband. I would go for a nature walk. It wouldn't have to be a long walk. Maybe just a half hour. I would go to the train station and buy a ticket to London for a day trip. I would go to the shop on the corner and buy milk when we've run out. 

I spend my life in bed, and the closest I get to seeing the world is from the windows of the taxi as I go to doctor appointments. My wheelchair doesn't let me in to many places, and even when it does, it is so uncomfortable, and sitting up makes me so tired. Sometimes, I just ache to see the world. I'll sit at the bedroom window and look out at the street and the flats nearby. There isn't much of a view. Sometimes there's a cat in one of the windows, or someone walks by with their dog. For all that, it's a far better view than I used to have out my window, in the old basement flat.

If I could go anywhere, I would go somewhere. Just somewhere.

#NHBPM

Day 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 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 7: The Waiting Room

Day 7 – Wednesday, Nov. 7
Redesign a doctor’s office or hospital room

I'm going to redesign the waiting room, because I end up spending more time there than I do actually in the doctor's presence. And it's because of the waiting room that I end up being extra fatigued for days after seeing my GP. 

The problem with waiting rooms is that they aren't designed for sick people. The waiting room at the GP is no different than the waiting room at a government office. Both offices should be disabled accessible (but often aren't), but only one should be designed for sick people. And it isn't.

First of all, let's address accessibility. Wheelchair spots. Where the heck am I supposed to park myself when the room is so full of seating that all the open spaces will block foot traffic? What the heck is up with that? Do you think disabled people don't go to the doctor? What the hell? I expect accessibility when I see my medical professionals! Get it right! The seats are never all full. Move some of them out of the room to leave room for the disabled folks. (And hey, moms with pushchairs too, but I'm not in that category myself.)

Now let's talk about sick people. Not just sick people, but really sick and feeble patients. How about a separate room for the really feeble people who aren't really strong enough to sit up? A room full of recliners, or beds or at least some sort of ability to become horizontal. This room for the very feeble should have noise restrictions. No shouting children, though quiet children are okay. The lights should be dim and the stimulation levels low. This room would be for people with migraines, ME, flu, or any other illness that leaves you shattered and weak. Yes, I know that some of the other people in the waiting room are sick too, but there are different levels of sick, just as there are people just in to have their kids vaccinated or their smear test, and these people are not weak. It's us weak people who need a place to rest while we wait.

It's dreadful going to the GPs office these days, simply because of all the time I have to spend sitting up when my body is not healthy enough for that.  I'd love to be able to lie down while I wait. Do I expect it to happen any time soon? No. Not at all. It's just a fantasy.

#NHBPM

Day 5: Assume Good Faith

I'm going to do something different today, and actually use one of today's prompts!

Day 5 – Monday, Nov. 5
Health Activist Soapbox.
OR
Write a #ListOf3 Things that you’re thankful for / excited about / or inspired by

Dear doctors, nurses, care-givers, benefits decision makers, friends, and family members of people with invisible illnesses: I have one request to make.

Assume we are telling the truth when we describe our symptoms and capabilities. Assume that we understand our bodies better than anyone else does. Assume that we really do want help and are not just malingering. Assume that we want to know what can be done and what can't be done for us, and that we want to be full participants in our health care decisions.

Yes, there are people who fake illnesses, and people who truly do not want to get well. Assume that we are not among that minority. Start from a position of trust and belief and don't jump into suspicion and accusations unless you've actually seen evidence.

Assume good faith. 

Please.

#NHBPM

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

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?

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)

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.

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.

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

My ME/CFS in Pictures

Welcome to Patients for a Moment:
Wordless Wednesday

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

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