One day, on an Internet mailing list for people with CFS, I was grumbling that spending half my life recovering from going to see this specialist wasn’t my idea of “a life”, CFS or not. Somebody suggested that I use non-urgent ambulance transfers to get there – I wouldn’t have to sit up, or drive my power wheelchair at all, so it shouldn’t be such a shock to my system.

On the second last day of February, 2004, I finally bit the bullet and used the ambulance transfer to go visit my specialist. The ambulance transfer was brilliant, compared to the usual wheelchair-taxi trip – the doctor let me queue-jump when I got there early, he saw me straight away and the ambulance men waited and took me home again as soon as he was finished. This meant that my total time out of bed was from 1:45pm to about 3:00pm – without the ambulance it would have taken 1-3 hours longer at least, plus I would have had the stress of being semi-upright the whole time in my reclining power-wheelchair, having to drive the powerchair around the hospital to get to my doctor’s, and bouncing around uncomfortably in the back of a wheelchair taxi.

I thought about the transfer a lot before it happened, and figured out how I thought it would be the least stressful on my system. In the end, I got the ambulance people to take my own pillows and cushions and quilt from my bed, so I felt comfortable with appropriate and well-known things to hold up my head and knees and something that was soft and light over my legs, instead of having standard ambulance pillows and blankets, which are – in my opinion – scratchy and rock-hard. And, since I was essentially still “in bed”, with a quilt over me as well, I just stayed in the pajamas that I would have been wearing that day anyway. That helped even more with the exhaustion because I didn’t have to extend my out-of-bed time by getting dressed before I went, and undressed when I got back, which is very hard even with a carer to help me – and there isn’t always a carer around.

I think that using my own pillows and covers was a very good move on my part because I didn’t have anything right beside my skin that I wasn’t used to and I wasn’t breathing in strange chemicals from unknown detergents and cleaners used to wash or sterilise the bedding or pillows. Sure, there was still some weird chemical smells around in the ambulance – I wouldn’t recommend it to anybody with severe MCS who can’t deal with a regular car trip – but for somebody like me with few inhalant allergies, it was better than I could have hoped for.

Oh, and I saved the $15 that a half-price taxi would have cost me too! I think that’s quite ironic, given that the net cost of an ambulance is way more for the government, that my portion is less!

I would say that the difference, health-wise, is that recovering from the ambulance trip takes me a bit less than a week, whereas recovering from the wheelchair-taxi version of the same trip usually takes nearly a month! It can even take longer if the taxi people really mess up – like the time when the taxi driver strapped me in wrong and I came within a fraction of a second of being hurled through the back window of a moving taxi!

Ambulance transfers work like this – on a stretcher but in a non-urgent “transfer” ambulance – have to be organised by your doctor or his receptionist. If you have a health-care or pension card, or if you’re an ambulance member, then it’s totally free of charge. If the doctor can see you right away, then you will stay on the ambulance stretcher all the time and the same crew will usually take you back; but if the crew can’t wait they’ll move you onto a bed in the doctor’s surgery and then another ambulance team puts you onto another stretcher for the return journey.

In conclusion, I very highly recommend this route of travel to anybody in the “very severe” category of CFS – for example people who usually would not travel outside the house, but absolutely have to go to see a doctor.

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This article was originally published at Ambulance Transfers – Another Option and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

How do you get the form to fill in for all this lovely magic to occur? Just phone the Australian Electoral Commission (AEC) on 13 23 26 and request the form to become a general postal voter.

Here’s the technical bit. To be a general postal voter (that’s what it’s called) you have to be able to say that one of a list of statements is true. For people with CFS the statement:

3) I am not a patient in a hospital, but due to serious illness or infirmity I am unable to travel from my residence to a polling place.

is true – I spoke with the AEC person who answered the phone and she said that if a visit to a polling place would be enough to make you sicker or in CFS terms put you into a crash, even for a day or two, that is enough that this category applies to you.

For carers the statement to tick would be:

4) I am an elector who is unable to attend a polling place because I am caring for a seriously ill or infirm person who is not in a hospital.

Having filled in the form all you have to do is post it back (an envelope with stamp is helpfully provided) and in about 10 days you’ll get a statement that says you’re on the list. Then the only tricky bit is remembering to update your address with the AEC every time you move house or your postal vote will go sadly astray. The form to update your address you can get from any post office or by ringing the same number – you use the same form as everybody else does to update your address, there’s no special form needed for general postal voters to change their addresses.

Happy Postal Voting!

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My ‘Surviving CFS’ series of articles pointed out resources specifically helpful for those in the local area:

• Chronic Financial Stress – about some of the “money tricks” that can help you keep the wolf from the door.
• Getting Help – Practical – Things not included in the above articles, like where to go to get a disabled parking permit, or to get a person from the local council to help you with the vacuuming.

Other articles on slightly more specialised topics have included:

• The Voice Amplifier Story – my experience of discovering, learning about and finally obtaining a voice amplifier to help my weak voice.
• Ambulance Transfers – Another Option Travel to and from a doctor can be very stressful when you have severe CFS. If your doctor cooperates, travelling by non-urgent ambulance, on a stretcher, may be an option. Here are some of my experiences with it.
• General Postal Voter Registration – How to register yourself and your carer(s) to vote from home in State and Federal elections, and why it’s a good idea.
• Talking Books – A Useful Resource – Talks about what talking books are, and where Victorians can get them from.
• The Victorian Aids And Equipment Program – Need a wheelchair but can’t afford it? What the VA&EP is for, and how to access it.

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This article was originally published at Victorian Resources and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

Government help

If you’ve been sick less that two years you are probably eligible for Sickness Benefits from Centrelink (what used to be called the DSS). These pay about the same rate as the Jobsearch allowance, and you’ll need your doctor to sign forms every 3 months stating you’re still sick.

After you’ve been sick for two years you become eligible for a Disability Support Pension (DSP). This pays a little more—the same rate as the aged pension—and as an added bonus you are only reviewed every 12 months or more so there’s less paperwork and hassle. It’s tricky to get approved for this but after you have drawn sickness benefits for 2 years in a row they are pretty much obliged to give it to you so it’s worth persevering.

If you’re married and your partner supports you then, depending on your combined income, you may still be eligible for a full or partial pension or sickness allowance. If your income is too high for either of these you may still be able to get a health-care card which doesn’t pay an allowance directly but still entitles you to the same concessions.

If you’re on one of these benefits there are a bunch of other subsidies you’re probably also eligible for and, being a government organization at heart, Centrelink are extremely unlikely to tell you this. I only found out through repeated questioning and searching the Centrelink website. These extra things can include:

• Rent Assistance if you pay rent
• Phone Subsidy if there is a phone in your name
• Mobility Allowance if you can’t use public transport much
• Pensioner Education Supplement if you are studying part-time
• Carer pension for a spouse who has to look after you

If you suspect you may qualify I suggest phoning Centrelink and asking them directly.

Health-care/Pension Concessions

If you are in receipt of one of those government benefits you will receive a health-care card or pension card. Many organizations provide discounts to card holders. These include:

• Phone companies
• Electricity companies (especially in winter)
• Water and Gas Authorities
• VicRoads (for car registration)
• NHS (for cheaper prescriptions at the chemist)

Generally all providers of basic utilities like these will allow some discount – it’s worth calling up and making sure you are registered as a card-holder.

You are also allowed to travel on public transport using concession tickets.

Many other places have concession rates if you ask but may not advertise the fact. It’s always worth waving your health-care or pension card around when you are about to pay, and asking if there’s a discount. This may help with:

• Doctors and specialists’ fees
• Pathology charges
• Tickets to movies
• Tickets to concerts and theatres
• Tradesmen’s fees

Other Concessions

If you happen to be well enough to travel but not well enough to go by yourself, both Ansett and Qantas offer discounts to disabled people travelling with a carer. You’ll need some sort of documentation, probably a doctor’s letter, and you should speak to the airline well in advance of booking your flight.

If you are feeling assertive and see cheaper rates advertised for the elderly, make it a point to say, “I assume this applies to disability pensioners too?” Most places I find haven’t ever thought of it but are willing to give me the cheaper rate once I ask. My supermarket did this so I now get free home-delivery instead of paying $4!

In general when I have asked if I’m eligible for a discount, I’ve found people to be courteous and helpful. And remember: It’s always worth asking, the worst they can do is say “no”.

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Your local council probably provides home help and meals on wheels. These services are usually provided to the elderly but they are also available for the disabled and chronically ill. You will probably have to pay a token fee, usually less than $10 per hour, for the services.

Home help will come regularly during the week and can help with household chores such as washing and cooking. Many councils will also provide a handyman on a one-off basis to do small household repairs. You don’t need to be completely unable to do a task to be eligible either, depending on how difficult it is for you. Many councils have a waiting list in this day and age of cutbacks, but as always things are worth trying.

Call your local council to find out how to apply for these services. They’ll probably send somebody out to your home to assess you. In my experience the council people have been great – I think they actually find it a nice change to see somebody who isn’t old!

Entertainment

People with CFS usually spend a lot of time at home which means that books can be a good source of entertainment. If you can read regular books but find it hard to get to the library, call your local library and ask about their mobile library service. Many libraries have a book van which goes around the neighbourhood every few weeks and can bring books to you.

If you have trouble reading—which includes trouble holding the book up or trouble with the fumes, as well as eye or comprehension problems—you will be eligible to get books on tape from the Vision Australia Library. This is the organization that used to be called the Braille and Talking Book Library and they send out tapes to blind and disabled people in lurid orange mailers. You’ll need to get your doctor to sign a form saying it’s hard for you to read regular books, but there’s no waiting period and the postage is free. You can either call up the library and request specific books or you can just tell them your interests and let them send out random books that they think you will like. I find the books on tape or CD are great company, and if I’m having trouble concentrating then I can just listen to a side a few times. If you’re interested in this, I have a specific article about it.

Getting Out And About

Disabled Parking Permits are another little help that people with CFS are often eligible for. Again, you need to apply through the local council and there’s a form for your doctor to sign. There are strict rules about who does and doesn’t get the permits, but I know many PWCs who have them. These will allow you to park in disabled parking spots and to park for longer in a regular parking spot.

For those who can’t use public transport at all, there is a program— the Multipurpose Taxi Program—which lets disabled people use taxis for half price.

And of course you can do lots of things on the phone. Most bills have a number on the back that lets you pay by credit card if you call up their number. Most banks offer phone banking. And shops are often happy to send out catalogues for free if you explain you’re disabled and find it hard to get to the shop yourself. It’s always worth trying as the worst that can happen is they say ‘no’.

Conclusions

As people with CFS, we’re often used to ridicule and people trivialising our conditions. This can make us forget that most people out there are understanding and helpful. And of course, on the phone you only need say you’re disabled, or you’re chronically ill, or whatever makes you feel comfortable—they don’t have to know you look perfectly normal! So give people a chance to be helpful by politely asking for what you need. The results might surprise you.

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Have you ever heard of the Victorian Aids and Equipment Program (VA&EP)? If you need any of these things, or anything like it, this is probably the program you need. The VA&EP provides free equipment for people with disabilities, the only proviso is that you give the equipment back when you no longer need it. As I joyfully informed them – if I didn’t need my wheelchair any more, a party of great proportions would be had!

My powerchair was purchased by the VA&EP scheme for me.

There are limits to the amount of money that VA&EP will pay out, with different limits according to the type of equipment. You won’t be able to get that ultra-light racing wheelchair you’ve been lusting after, but a basic wheelchair will be under their limits. And if what your occupational therapist recommends is more expensive than the limit, they will let you pay only the extra amount rather than buying cheaper equipment if that’s what you prefer.

To access the VA&EP, you’ll need an occupational therapist who, as well as knowing how to assess you, can write up requests for the equipment you need. Call a local occupational therapist (OT) (check the Yellow Pages or call up Occupational Therapy Australia (Victorian Division) on (03) 9481 6866 and ask for an OT in your area. That’s how I found mine, and she’s wonderful. You can also find more information online at the Victorian Aids and Equipment section of the DHS website.

Then, after the applications and assessments are done, all you have to do is wait for your disability equipment.

Good luck!

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There are three main sources for talking books:

1. Your local library, and even your local bookshop, probably has a limited range of talking books on CD and audio tape. These will be free from the library, but at the bookshop tend to cost more than the book on paper. Your local library is free to join and will be in the phone book, or contact them via your local council. Usually you’ll need to be mobile enough to go there to get your books, but some branches have a home-library service for the elderly and disabled.
2. Vision Australia Library – the library of audio and braille books for the print handicapped. Vision Australia Library has mostly blind users, but caters for people with CFS who suffer brainfog which makes reading hard, and weakness/low stamina which makes holding the books hard. This service mails books on cassette tape to you – no charge for postage either way, and its even free to join! Their range of fiction is pretty good but they are short on non-fiction. Vision Australia Library can be contacted on 1300 654 656 during normal business hours, Monday to Friday.
3. The commercial website Audible has a bigger range than either of the above services, but you’ll have to pay for the privilege, as well as be connected to the Internet to access the site. Usually a recording from Audible costs about the same as the book itself would cost in paperback form, so the cost is not too outrageous. Once you have downloaded your book, you can listen directly at the computer, load the book onto an MP3 player such as an iPod, or turn it into a CD-ROM to listen to in the car, or in bed. They also have a neat login service which ‘remembers’ which books you’ve paid for and lets you download them over and over in case you loose them.

Talking books can be good for people with all degrees of CFS – whether you listen on the train on your way to your part-time job, or while you’re bedridden and listen to them softly because its all your ears can tolerate.

Talking books – talk about one today!

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