And I already know that I’m a highly hypnotisable person, from past events.

Another huge advantage was that I could learn it myself, at home, by buying a pre-made self-hypnosis-for-pain recording and using that every day and I would “automatically” learn as I had more practice at it. Being both broke and bedridden, there is no way I could attend a psychologist’s office each week for several months, like a method such as CBT would require.

So, all in all, it seemed like a good thing to try.

Thus began my self-hypnosis quest. The first thing I needed was a recording, and since the Internet was the best resource I had easily available I first did a bunch of web searches for terms like “pain control by self hypnosis” and similar, refining the searches. It took a lot of searching but in the end I found a site that had a recording for pain control available for download. The site (one by somebody called Kenneth Grossman, in case others want to look) was fairly tacky looking but I really wanted to start with something and at least it wasn’t as expensive as most of the others (the recording I purchased cost about US$40, at the time).

That night, about the time I usually started – and failed – to go to sleep, I put on the self-hypnosis recording. At first it took a lot of wriggling around before I was as comfortable as I could be and I ended up stopping the recording and starting it again before I could settle down. Later I set the computer up so a slow and calm song which I liked plays immediately before the recording, leading into it. This gives me time for wriggling around and getting comfy before the self-hypnosis recording commences.

That first night, after having spent up to 12 hours getting to sleep for the last several months, the recording magically sent me right to sleep before it had even ended! The second day I was still awake when the recording ended, but was asleep 5 minutes later! When I analysed how I felt after the recording, it wasn’t exactly that the pain itself was less, it was that somehow it wasn’t being labelled “important” by my brain and was easy to ignore.

After a lot of experimenting with these tapes and recording the results along with my pain level (on a scale of 0 = no pain, to 10 = worst pain imaginable) before and after the recording, I have found interesting things I’ve never known before. These are the things I’ve found:

When my pain is at or less than around 4-5 when I start, then the recordings do indeed help with the pain, and help to relax me a lot as well. When the pain is at this level, I find it very easy to go to sleep during or soon after the recording.

However, if the pain is above around 5, then the pain is so strong that it seems to prevent my from concentrating on the recording properly. If I try to relax physically when the tape says to, then the pain appears to increase even more and I can’t stand it. When the pain is above 5 the recordings don’t relax me emotionally or physically, and the recording doesn’t help to reduce the level of the pain either.

So if the pain is really out of control then the self-hypnosis is utterly useless!

The claims of the recording – that they will permanantly lower or even eliminate the pain – have from my experience got nothing to do with reality, but that’s not so surprising when we are talking about advertising! Even when the pain level is low to begin with and the recording helps me, the help is only temporary.

I have found the best way for me to use the self-hypnosis recordings is to play them soon after I take my pain medications have been taken and right before bed. Then – instead of my usual several hours of pain-caused insomnia – I am able drop right off to sleep quite easily during or very soon after the recording plays.

In conclusion: Well worth the price because of the effect on my insomnia, but the recordings don’t come even close to living up to their claims of “permanently lowered pain”.

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This article was originally published at Self-Hypnosis For Pain Control and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

CFS fatigue differs from healthy fatigue not only in the severity, but in the quality.

Normal fatigue is tiredness. CFS fatigue is painful.

Normal fatigue occurs when you’ve put in a full day’s work, or extensive exercise, and you can recover quickly. I am now healthy – when I’ve ridden my bike fast for an hour, I feel similar to how I used to feel if I’d walked the length of my hallway. If I rest for a few minutes after the bike ride, I can do other things. When I had CFS, walking the length of the hallway would wipe me out for an hour.

Normal, exercise-induced fatigue is usually combined with exhilaration or satisfaction, and often by endorphins. A CFS patient’s body is usually too sick to manufacture endorphins, and walking down a hallway would rarely trigger them anyway. You get the pain and the exhaustion without the achievement or the pleasure.

Rest and sleep cure normal fatigue. You usually wake up feeling rested and ready to go – if not, you know there’s something wrong. Sleep often seemed pointless when I had CFS. You go to sleep, you wake up feeling just as cruddy, why bother? Sleep was just succumbing to the body’s limits. Again. Sheesh.

The closest analogy I know if is a bad flu. The one where you’re lying in bed, and you know that despite the pain if you just got up you could get yourself a drink. And while you’re up, you may as well do the dishes, put on a load of washing, and feed the cats. So you start to get up .. and discover you can’t even manage to sit up. And the effort of trying to sit up has made the pain worse.

Now imagine that for ten years.

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1. Thou shalt not be perfect or even try to be. Realistic expectations only!

2. Thou shalt not try to be all things to all people. Save some time for yourself.

3. Thou shalt leave things un-done sometimes.

4. Thou shalt not spread thyself too thin.

5. Thou shalt learn to say, “No”. You can say, “No”, gently and with respect.

6. Thou shalt make time for thine own self and thy support network. Supported people live longer and happier lives.

7. Thou shalt switch off and do nothing – yes, nothing – regularly.

8. Thou shalt be boring, untidy, inelegant and unattractive sometimes – it’s OK.

9. Thou shalt not feel guilty.

10. Thou shalt not be thine own worst enemy. Be kind, gentle and loving towards thyself.

Original source unknown. Adapted by Ricky Buchanan, 2002. If you know the original author, please contact me as I would like to give obtain formal permission and to give proper credit.

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Dear?

You are allergic to stress. Let’s see if I can explain.

Everyone has a certain capacity for stress – a point at which they get irritable (or some other reaction), then a greater point at which their body demands that they leave the stressors, then a point at which they actually start to be physically damaged by it.

Imagine that a person’s capacity for stress is like a barrel with an open top, and a hole at the bottom. The capacity for things to enter the barrel is huge – the capacity for things to leave is reduced. The inflow is much, much greater than the outflow, so the barrel could easily fill, even with a perfectly open hole. Most people don’t get into that situation for long – they have brief periods of high stress, but never enough for the barrel to fill up.

Now look at a CFS patient. The barrel is the same size, the top is just as open. But the hole at the bottom is clogged up – only a trickle gets to go out. And there’s ALWAYS some stuff entering – the pain from the CFS, the brainfogs, the irritations, the fact that half the world doesn’t believe in it, the fact that the other half is sure ‘they’ can ‘help’.. And there’s the kicker: We get physical damage from the stress at the same point as Joe Average just gets irritated!

All of these things mean that a situation which adds a mild amount of stress, added to the CFS situation, may mean that your barrel is filling faster than your condition allows it to empty. Depending on your condition, your barrel may be filling faster then it empties even if you’re lying in bed asleep – my early ‘treatment’ was an attempt to remove me from inhalants and eaten allergies, to reduce the amount of stressors in my environment! (The good news is: it worked. And I now have a ‘resting’ state where my barrel can pretty much empty itself out. This lets me heal…)

Your capacity for stress is just the same as your family’s capacity – it’s just that your barrel is already partly full, there’s always some stuff entering it and you can’t clear it as fast.

And note that good things are also stressful. Never forget to allow for that when you’re making up your stress budget for the week…

And DO budget your stresses! If you set your stress budget up right, staying within it will allow your body a capacity for healing. If it’s set up to allow too much, or if you exceed it, your body will let you know – you’ll be suffering. Me, I wind up asleep for a week.

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The words nearly jumped off the screen as I read them:

The voice amplifier is a small portable aid that is worn on the body. It is useful for people who have quiet speech … Only outgoing breath, such as a whisper, is necessary to enable the voice amplifier to provide amplification.

And then, a little further down the page:

Anyone who has a very quiet or weak voice may be an appropriate user.

At the time, I was reading the web page of ‘Technical Solutions Australia‘, a company that provided aids for people with different types of disabilities. They had everything from toys for kids who were paralysed, to little tiny keyboards that spoke what you typed into them – for those without the use of their voice. I had just been looking because I found the different gadgets interesting to look at though. I’d never expected to find something that I might be able to use.

My CFS had been full-blown for … umm … it was 1993 so that made nine years now. It had been getting worse the entire time too, and I was bedridden 99% of the time now. More to the point, for the last year my voice had been getting softer and softer and softer and softer, the sicker I got the softer it got – and it was worst on days I was crashed so I imagined as I kept getting sicker it would keep getting softer too. It scared me, not to be able to be easily heard.

That web page set my imagination off and running though … could one of these voice amplifier mean that I could make myself heard without feeling like I was yelling? Could it mean I could use a hands-free telephone, so I didn’t have to crick my neck turning to squeeze the handset of my voice-amplifying telephone between the pillow and my ear to have a phone conversation? This sounded exciting! I turned back to the screen to read the rest of the entry carefully, and study the pictures of the little gadget.

13th of February, 2004

Let me flash forward a few months … it’s the 13th of February. Friday the 13th of February. The luckiest Friday the 13th I had ever had, actually. There were two men beside my bed, an occupational therapist and a speech pathologist. They were from ComTec – the computers-and-electronic-gadgets section of Yooralla – and they were assessing my voice to see if a voice amplifier would help me, and about if I would be able to use my holy grail of the hands-free telephone.

I don’t remember what they did that day, but I remember them deciding that a voice amplifier would help me and then explaining that I could get one on a free loan for as long as I needed it from the Victorian Aids & Equipment program! The only catch was it would take 3 months or more to get to me. But I wasn’t too worried about this, over a hundred dollars worth of voice amplifier for the price of a 3 month waiting list seems like a tremendous bargain when you’re on a pension.

8th of April, 2004

I got my voice amplifier today and it’s working perfectly. I’m totally thrilled with it and I can’t wait to get my hands free telephone now so I can have lots of non-stressful and much-less-painful phone conversations too! No more neck strain yay!

The little microphone connects to my glasses and sits neatly at the corner of my mouth. The occupational therapist who came to deliver the voice amplifier to me wrapped a wire around the microphone cord to give it some strength and so it’d stay put instead of flopping around. It’s much neater than a headset would be, and won’t give me the headaches that the pressure of a headset does.

It’s so cool! Yay for me!

15th of April, 2004

Making friends with my voice amplifier is being a very interesting journey emotionally – getting used to such a “personal” piece of equipment, in terms of being inside my personal space. Having a microphone trailing from my glasses frame down to the corner of my mouth, occasionally bumping a lip on it, being tethered to the little amp/speaker box … it’s all very new and has been at times very strange.

When I first got it, and discovered I could actually TALK LOUDLY or YELL for (or at!) somebody I was thrilled. It was something that gave me back something I’d lost.

But in the first few days after that, when the initial thrill wore off, it felt bad for a while. The wire on my glasses kept coming adrift, making the microphone unsteady. It kept getting in the way of things. I don’t yet have the hands-free phone which is going to be so useful with it (should be here in a month or so). It seemed for a while like it was a lot of trouble for no gain.

No gain? Unfortunately I got myself into a full-blown case of denial. I kept telling myself that there wasn’t any point to having the voice amplifier, that I didn’t need it, that I could talk perfectly well to people without it. And I can talk to people perfectly well without it … as long as they’re within 2 metres of my bed and not over the other side of the room, or in the kitchen, or further away.

I had even convinced myself that I should give the whole thing back so it could be distributed to “somebody more deserving”. The only thing that stopped me was that I remembered getting used to other disability equipment had been hard too, so I pledged that I’d keep it until at least a month after I got my phone, to give it a chance. But privately, I was convinced it was totally unnecessary and useless and horrible and I would be giving it back when that time was up.

But then I got brave and completely rearranged how the wire on the microphone cord attached to my glasses. I also figured out a way to get the microphone to sit rock-steady at the corner of my mouth and suddenly the microphone stopped being a problem and started being an asset. I began to appreciate that this microphone is lots less nasty and intrusive than wearing a headset would be and I’m lucky I thought of this method of attachment. I am getting used to used to taking my glasses off if I was moving away from the amp box, or picking the box up and bringing it with me. It’s not that hard, really, it’s only a little dinky thing.

Then, all of a sudden, it hit me that something had changed a lot … previously if I wanted something from a carer, I would gather my energy/effort and call their name as loud as I can, then wait until they came over to me before I told them what I wanted.

Now, so naturally that I wasn’t even faintly aware of it beginning, I had started talking to people who were further away. I had started to say, “Hey, would you get me a coke in that green mug and toss a few ice-blocks in and bring it over, please?” instead of just yelling out, “Curly!” and waiting for her to come over, which saved her an extra journey to my bedside as well as being more fun. And I had started having conversations with carers when they were over the other side of the room, or in the kitchen. I had actually even started to chat to them while they were doing stuff!

After I realized that my voice amplifier really, honestly, did give me more communication options – more times I could talk to people – suddenly it was my best friend! Suddenly I noticed all the times it made things easier. Apart from talking to carers, and the anticipated telephone, there were other things too … When there was somebody at the door and they didn’t read the instructions there to enter immediately, I could call, “Come in!” When a carer was vacuuming in another room and I needed them urgently, I could yell loud enough for them to hear me and come to the rescue. This device was neat!

So I’ve made friends with my voice amplifier. I still notice the microphone in my peripheral vision a bit, sitting along my cheek – but then I noticed my glasses rims acutely too when I first got my glasses, and I never see those now. I still need a longer bit of wire to fix the microphone even better, but that just needs a carer to take a trip to a good hardware store with a few dollars. I still occasionally forget and pull my glasses abruptly off myself by moving to the end of the range of the cord without picking up the box, but that’ll become an automatic thing too.

It’s good for yelling at Thomas when he’s bad, too. He’s bad a lot.

*grin*

16th of April, 2004

I am going to get some longer and slightly stiffer wire to attach the microphone to my glasses so it doesn’t bend quite so much. I think having a whole roll of wire so I could re-do it as often as I needed would be very helpful. I keep figuring out better ways to wind it but I can’t re-wind it with the same wire because it’s getting all weirdly bent.

It’s amazing how important it is to have the microphone wired exactly how I want it wired and to get it perfectly rock-solid. If I had known that at the start I would adapted faster to the microphone instead of spending time with it waving all over the place.

At the moment, it looks like this:

Wearing the voice amplifier microphone attached to my glasses

21 April, 2004

Ack! I lost the little bit of black foam that goes over the end of the microphone. Now it’s picking up all sorts of bits of my breath every time I try to say anything and although it’s still usaable it’s harder for people to understand. Silly me, the little bit of black foam had fallen off about a million times since I got it and every time I put the damm thing back onto the microphone I thought, “I should glue this on,” but I never got around to it. That’ll teach me.

I wonder if you can get a replacement for it. I have emailed my OT from ComTec to see if I can indeed replace it, as I have had my carers look positively everywhere for the scrap of foam and it seems uncannily elusive.

2 May, 2004

After a very smart suggestion from a friend, a small piece of sponge is now doing double-duty on the end of the microphone to cut down on the breath noises you get without any foam on the end. Works like a treat although I probably look a bit silly with a bit of blue and white striped “Chux super-wipe” on the end of my microphone.

Actually, I totally don’t care! It works and I love it. Being able to talk to people who aren’t right by my is much more important to me than how silly my bit of blue and white Chux might look! Voice Amplifiers forever!

Conclusions

I’m currently analysing the results from the CFS Severe Symptoms Questionnaire. One of these questions was about voice volume, luckily. My research shows that over half of the CFS population have some type of trouble with the volume of their voice – and this includes people with all different severities of CFS from mild to very severe!

This means that spreading the word that funded voice amplifiers are available to people in the CFS community is a vital thing – it’s something that will help many people with CFS. To be helped by voice amplifiers, people have to know they are available and that they can be extremely helpful and useful. I hope this article is a good first step to disseminating that information

Postscript – December, 2004

I have had the voice amplifier for more than six months now and I still use it nearly every day. Some days I am so sick that I don’t even put my glasses on because they hurt my ears/nose too much, so those days I don’t use the voice amplifier, obviously. I alternate as to whether I use it to make handsfree phonecalls – it depends how much my arms and neck are hurting (handfree is better if they are) and whether there’s any background noise (handsfree is worse if there is).

The voice amplifier is most useful when I want to have a conversation with somebody who’s further away than beside my bed. I don’t need it for beside the bed, but if the carer is moving around the house, cooking, etc., then it’s wonderful. For yelling to somebody at the front door to "come in", it’s absolutely vital!

I’m very glad that I got the voice amp. If it broke, I wouldn’t hesitate to get it replaced.

Appendix – Contacts for Melbourne, Australia

These are the places who have helped me most in my voice amplifier quest. Technical Solutions sells voice amplifiers “off the shelf” in several different models, and provided the one that I got through the funding scheme. ComTec assessed me and applied for the funding for my voice amplifier sos I didn’t have to pay anything.

Technical Solutions Australia

Phone: (03) 9737 9000
Fax: (03) 9737 9111
Email: inquire@tecsol.com.au
Website: http://www.tecsol.com.au

ComTec

Phone: (03) 9362 6111
Fax: (03) 9314 9759
Email: comtec@yooralla.com.au
Website: http://www.yooralla.com.au/comtec/

People not in Melbourne, Australia will have to find their own contacts, although I suggest that Technical Solutions may well know where to point you.

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This article was originally published at Diary Of A Voice Amplifier and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

Please note that I am NOT a biochemist or a doctor or anybody else who’s qualified about this stuff! What’s written below is my understanding from what doctors and biochemists have told me. If there are any mistakes in it, please let me know via email and I’ll fix it up.

Just for clarification, this is what’s supposed to happen:

> When you exercise any muscle it needs energy.  Energy comes from
> carbohydrates which are broken down and stored as glycogen in the
> muscle cells.  For the muscle to get energy from the glycogen it
> must be combined with oxygen (from the red blood cells) and enzymes
> (from the muscle cell itself).  This whole process is known as
> aerobic metabolism.

This is what seems to happen in (some?) CFS patients:

> However, when there is a lack of oxygen, the result is anaerobic
> metabolism, in which an excess amount of lactic acid is produced.
> This is similar to what happens in a marathon runner.  In a healthy
> person this lactic acid would be burnt off after a day or two, but
> in someone with M.E./CFS/CFIDS, the build up is much quicker (after
> relatively little exercise), the muscles accumulate this excess
> lactic acid and it takes a lot longer to get rid of it.  This is
> what leads to pain, tenderness, fatigue (and sometimes twitching) in
> the muscles being almost permanent even after very little
> exercise.

This anerobic metabolism is also called ‘catabolism’. It’s basically what happens when your muscles start breaking themselves down to get the amino acids back to use them for energy. It’s generally a Bad Thing, health wise, and only generally found in three classes of people:

1. Endurance athletes, like marathon runner or long-distance swimmers, after they have just run a marathon or something. In this case it happens because all the usual available energy sources have been used up, but energy is still required.
2. People with severe cases of anorexia or extreme malnutrition like you’d see in some third-world countries. Here, it happens because no new energy (ie food) is being put into the system and so the energy has to come from somewhere else, and the only place left is muscle tissue. If this is happening, then the person is probably sick enough to be put in hospital ASAP.
3. People with CFS. Nobody really knows why – for some reason our muscles think there is no available energy when really there is, or there’s some other problem that means they can’t use the available energy.

This is NOT just a theory. One of the major things that the Newcastle urine tests find is evidence of chemicals in the urine that can only be put there if catabolism is happening.

So basically, even mild exercise (slow walking, getting up to go to the bathroom, whatever) in somebody with CFS makes the body react as if it’s been running a marathon!

Extra Note: This doesn’t mean that you should do no exercise. The catabolism is (this is my understanding, anyway) is part of what makes us crash after exercise – so if you can find exercise that doesn’t make you crash, then it’s a Very Good Thing and stick to it. But don’t be surprised if that amount is a lot less than you expect.

And don’t fall into the physiotherapist’s common trap of “if you start small you’ll be able to increase it”. This works for healthy people because when they start doing exercise their fitness increases and their body gets more efficient and transporting energy (glycogen?) to the muscles. But our problem is NOT lack of that energy, the problem is that isn’t not being used properly, so if your CFS isn’t getting better, then that place where the catabolism starts to kick in probably won’t move, so you probably won’t be able to increase how much you’re doing past a certain point. And that’s okay – it’s just CFS.

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But like it or not, you may need to give it some thought. My doctor sent me off for a bone-density scan last year. Back came the results: “You have the bones of a healthy 76 year old woman.”

That’s just great … except that at the time I was just 23. If I had the bones of a 76 year old at 23, what will me situation be like when I am 76? In short, not good.

When I quizzed the doctor on why I got such an odd result, he explained that being immobile was a huge risk factor from osteoporosis. And having had severe CFS for 5 years, spending at least 3 of those years substantially bedridden, immobility is something I’m rather familiar with.

Also, like many other people with CFS, I have trouble tolerating dairy products, so my calcium intake was lower than average.

Since I certainly don’t need broken bones to deal with too, here are the things my doctor told me will help build bone density:

• Eat dairy products. I found that even though I couldn’t tolerate milk, I could cope fine with yogurt. If you really can’t tolerate any dairy products then you might want to take a calcium supplement, but getting calcium from real foods works better.
• Spend at least 10 minutes a day in the sun so your body can manufacture enough vitamin D. This is also required for bone density, and people with CFS are likely to be inside enough that their levels are low.
• Try a little weight-bearing exercise. My doctor informs me that walking down hills is actually better than walking up hills, for building bone density – finally, some news I like to hear! And even walking a few house-lengths down the street and back is enough to make a difference, every little bit helps.
• Eat avocados and nuts and other foods containing Boron. Apparently the boron works with the calcium to strengthen the bones.

If your CFS has been bad enough to substantially limit your movement for a number of years, then talk to your doctor about getting a bone-density scan. It’s rebatable on Medicare if there are known risk factors (and being bedridden from CFS counts), so it won’t cost you much.

And even if your results come back normal, consider doing some of the things listed here to help it to stay normal.

Look after your bones – with CFS, they may be the only thing holding you up!

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If you are interested in saving energy with bigger jobs like house-cleaning, cooking, or showering, then you may like to check out the ‘Tips’ articles instead.

Paying Bills

If I am having trouble finding energy to pay bills, I will wait until the red copies start coming in to put it off as long as I can, but I always make a big effort to pay them before any late fees kick in.

As far as possible, I set up my bills to automatically be paid on the day after my pension comes in. This minimizes the risk they will bounce and I’ll get late fees and bank charges. With automatic payment, it’s extra work while you’re setting it up, but in the long run I don’t have to do any work after that unless things change. In many cases you can pay automatically even if the option isn’t advertised – just phone up and ask to be put through to the accounts department and ask if there is an auto-pay facility. Some companies only let you pay automatically if you pay further in advance, or pay a little and often instead of all at once when the bill comes in (electricity companies do this a lot). You’ll have to weigh up for yourself if this is worth it for you. For me, it definitely is!

Buying Medication And Supplements

I always order as much as possible my prescription medications, supplements (vitamins, minerals, herbs), and other pharmacy-based stuff from the same companies each time. For supplements, I choose a company which uses online ordering so I can order when I choose even if its 2am Sunday, and because I’m broke and it saves the phone call and/or stamp money – this may seem insignificant but it adds up!

With prescription medications, if you order over the phone or online you will need to snail-mail your scripts to the pharmacy before they’ll send out your order. I’m never organized enough to do this, so I use the local pharmacy instead. If you have the energy, phone around (or get a friend to) to find a local pharmacy which will pick up scripts, deliver medications, fill your dosette each week, and give you an account which you pay at the end of the month. This saves endless hassle, I find, because if I need something I just get them to pick up the script and next day the meds appear for me, and all I have to do is phone up once a month to put the account on my credit card!

With non-prescription meds ordered online, I try to order enough for exact multiples of 100 days of supplements at a time – that way the bottles (which usually have 100, 200 or 500 pills in them) all run out at the same time and I don’t have to order very often, or waste postage for the packages. If I have extra money, depending if they’re on sale and how much I can afford, I will order 200 or 300 days of a certain tablet.

For example, just say I am taking B Complex 1 tablet per day and Acidophilus 2 tablets per day (small part of my regime, but example only!) and they both come in bottles with 100 tablets in them. I will buy 1 bottle of B complex and 2 bottles of Acidophilus at the same time and they’ll both run out at the same time. Doing it this way means that I order lots at once, but only very infrequently. I usually do a big order online every 3 months, depending on when the sales happen with the company. It can be hard on the credit card, but I’d rather pay an extra dollar in interest and use up less energy! Another bonus about doing big orders at once is that if you have the energy for it, you have more power to negotiate to get extra free gifts or a discount on postage or whatever – although to do this you must order over the phone rather than online.

AUSSIE TIP: There are several companies in Australia which are useful for online ordering of pharmacy, OTC and supplement produts. These are some of those that I have used, or friends have personally recommended to me:

• thexton.com.au – Supplements, low-allergy foods, low-chemical household products, and much, much more. Very low prices, compared with my local health food shop. They even offer free postage if you are a member of the RACV in Victoria!
• Golden Glow – Supplements and low-chemical cleaning products, etc. This is my personal choice for buying supplements online. Good quality, fairly low prices, have frequent sales and it’s only $3 postage within Australia no matter how much you order! They also have naturopaths on stuff who can be email or phone-consulted for free via telephone or email if you need advice.
• E Pharmacy – A general pharmaceutical and OTC products shop. Their prices are fairly cheap compared with other pharmacies, and they offer free delivery if you have a healthcare card (this includes everybody on sickness benefits or a disability pension)

Food Shopping

Food shopping is really not something most severe ME/CFS sufferers will be forced to do, but if you have not enough support from carers (paid or family or otherwise) to have somebody do it for you, it is possible. It’s difficult, yes, but it’s definitely possible because I did it for months. There are two options that I know of for shopping for major food items without leaving home – phone orders which are delivered, and shopping online.

Phone orders/home delivery is something mostly done by smaller neighbourhood shops who need the business. My healthfood shop does this, for example, and offers free delivery for any order over $25. To get the free delivery, I try to put off ordering until I have a whole bunch of stuff to get … and let’s face it, putting off hard work is something all severe sufferers have had to become experts at!

You may even find that your local supermarket offers the phone order/home delivery service for people with disabilities who have a pension card! My local Coles does, but the Safeway next door doesn’t, strangely enough. They charge $6.50 for picking and delivery, plus the regular cost of the food. Because the online supermarkets mark up each item about 10-20% (and no, they’ll never admit this, but it’s true), this actually ends up a lot cheaper than the online supermarkets whose delivery charge is only around $5.

If you’re interested in having your food delivered, then try phoning around to all the local stores. At each one, explain that you are housebound by a serious neurological illness (avoid those awful words “chronic fatigue syndrome” unless pressed!) and cannot go shopping and that there’s nobody to shop for you. Tell them you are on the disability pension, too, as you may qualify for a reduced or waived delivery fee which is handy on the wallet. If the shops don’t offer anything, ask them if they are aware of other shops that do – this sounds odd but it often works. If you aren’t having any luck, you might also ask to speak to the manager and ask him to make an exception, or suggest he begin a scheme for home delivering phone orders … you never know your luck!

Once you have your “yes” list, put it somewhere so the phone numbers are all together and easy to find!

However, if you can’t get home delivery or can’t get enough shops to home deliver, you might want to look at ordering food online. This is more expensive because as well as the delivery fee, every item wil cost between 5% and 25% more than in the physical store! Also, I am not aware of any online food places which waive or lower their fees for disability pensioners, although its always worth asking.

AUSSIE TIP: Here’s a list of online food shops I have collected through recommendations from friends and from what I use personally:

• thexton.com.au – A great range of low-allergy foods, supplements, low-chemical household products, and much, much more. Very low prices, compared with my local health food shop. They even offer free postage if you are a member of the RACV in Victoria!
• Coles Online – Just the same as the regular Coles supermarket, except for deerer prices and different sale items. Their delivery fees are fairly reasonable and they deliver next-day usually.

Buying Other Things Online

I order as much stuff as I can on the net. I try to save things up and wait as long as possible so I can bigger orders which saves on postage, but if I can’t do this then I still probably order stuff online because it’s so much easier than using phone or mail order. Also I often email companies with queries if I have trouble figuring stuff out, and I email companies with questions like where to send something that’s broken down under warrantee, etc etc. Saves on lots and lots of tiring phone calls and can be done when I have energy even if (like now) it’s at 5am.

AUSSIE TIP: These are some of the Australian companies which I use to do online ordering. I have found that they are all good value, provide good and prompt service, and generally treat me well:

• Tandy – for small electronics and big, as well as stuff like rechargeable batteries and those other little bits and pieces.
• Dick Smith Electronics – For computers and technology such as printers, digital cameras, etc.
• Officeworks Business Direct – This new company was a merge between Officeworks and Viking Paper Products and they offer all the stationary you can imagine, plus computers and printers and mobile phones and software and all the accessories for those … they even offer bits of furniture and other “small business”-related stuff. Huge huge range and good prices overall, especially on the stationary side of stuff.
• Bodywise – Lingerie, including plus-sizes. Most of their inventory is fairly practical (and extra-comfy) stuff rather than the “sexy lingerie” type of shop. Lots of stuff that’s great for in bed including what they call a “sleep bra”! They refer amusingly to their sizes as: ‘small’, ‘medium’, ‘gorgeous’, ‘extra-gorgeous’, and ‘goddess’!
• ABC Shop – Books, DVDs and Videos, CDs including classical and current music, and talking books. Also a range of kids’ toys. Mostly sell things that have been shown on the ABC network or published by ABC publishing, but still a wide range. Excellent for finding gifts.

These are some other Australian companies that others have recommended, which they have used for online ordering and believe are good value and have given them good and prompt service. If you’d like to add to this list, just email me with the name and web address of the shop, and a broad list of what they sell. Here’s the list:

• EziBuy – Clothing and home wear. (Thanks Raven)
• Wishlist – What they call “giftware” – as far as I can tell this means a bit of everything and fairly high quality stuff only. (Thanks Raven)
• Chaos Music – DVDs, CDs, computer games, plus some merchandise (I think this means music-related T-shirts), and more “giftware”. (Thanks Raven)
• Chaos Books – Books on all topics, with a focus on music- and movie-related books. (Thanks Raven)
• D Store – An online department store much like ‘Target’. (Thanks Ravene)
• Minotaur – Science fiction and fantasy books, and lots of stuff linked to movies and TV shows like posters, tie-in books, etc. (Thanks Lisa)
• Streetwise – All things Apple Macintosh including iPods, iMac computers, and Mac software and peripherals. (Thanks Lisa, and I use this one too – I’d forgotten!)
• Lisa’s Lacies – Plus-sized lingerie.
• Milsims – Computer games, board games, RPG games, etc. Always have specials available (Thanks Leadgend).

Some of the companies have frequent buyer clubs or reward points. I research these online as much as I can before deciding to join, as some of them are useful and get you cool stuff and discounts and others are just crap to get you to use the company.

Buying Larger Items

If I am going to buy a big item like a radio, electric blanket, etc., I will do research for best prices and brands online also. But for big items I usually will order by phone when possible because then I can get companies to do price-matching to get a better price, and dicker/bargain for extra free gifts or discounts or free delivery. I always play the “pity card” and explain I’m handicapped and bedridden and can’t even use a wheelchair (all perfectly true – I don’t mention ME/CFS because it’s so misunderstood) – I don’t find it demeaning to ask for free delivery because I can’t get to the shop, for example.

I also point out if it is even mildly relevant that I have a pension card and ask if this entitles me to any discounts or freestuff.

ONLINE RESEARCH TIP: When researching online, if you can’t find the info you want online, use an email address or “comments box” for the company off their web pages and ask them to send you brochures and any other information they have about whatever you are researching (a product, their frequent buyer club, etc.) and give them your mailing address and also your phone number if you are OK at phone calls and they don’t tire you out more than you can stand. If you give them your phone number, feel free to suggest your best time to receive phone calls too – I always write “only afternoon calls” because I sleep in the morning.

Got Any More Suggestions?

If you have suggestions which you think could usefully be added to the list, or a company to add to the ‘good online ordering companies’ list, please contact me or leave a comment at the bottom of this page. I may take a while to add your entries to the list (I have severe ME/CFS too, remember!) but I will do it eventually, promise!

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General Phrases To Use

These words may fit into many different situations, and help to explain how serious and immediate your need is:

• “I am relying on you”
• “Yes, I do need an assessment, immediately.”
• “Is there was anyone in your department who could better deal with my enquiries and provide me with the help I needed?”
• “How CAN you assist me?”
• “Do you know of another agency that may be able to help me?”

Countering Negatives

If you hear, “no” or, “I can not help you” or, “you do not fit the criteria” or similar knock-backs, these phrases may be helpful:

• “Who else could help me?”
• “Who is it that I need to talk to, above you, that has the authority to to help me?”

Aids & Equipment Applications

When you are appying for aids and equipment, the following may be helpful even if it’s not totally true. It lets the aids and equipment people know that you are sure that a certain thing will help you:

• “I have been hiring [whatever the item is] at [whatever the cost is] per week. I find it helpful, but I am on a disability support pension and can’t affort to continue to hire it.”

Also, if specific people in authority, such as your occupational therapist, have recommended you use an item of equipment, make sure that this is known. These people’s opinions carry significant weight with aids and equipment funding bodies.

If Told That Friends Should Help

When you live with a non-family member, (eg, a housemate) and you’re told that they should help you with whatever you are applying for, these words can be helpful:

• “The person I share with is not my relative and is not my carer and doesn’t want to be.”

This situation is most likely when you are approaching the local council for home-help services, incidentally.

General Guidelines

These are some more general rules that can often be helpful:

• As much as possible, ask people to send any information to you in the mail so you have a hard copy.
• Keep an exercise book, or a computer file, of all your contacts for various services and medical people, even if they aren’t useful at the time. Things could change in the future and thesoe people might be helpful then.
• If somebody was particularly helpful, send a note to their manager (or talk to them on the phone, which takes less energy but has less impact) saying how helpful the peson was. That person is then much more likely to remember you, which could be helpful.
• Always say, "Thank you". What goes around comes around!

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I was talking to my grandmother the other day about how fantastic the upcoming paralympics would be, “Yes,” she commented, “and I’m looking forward to seeing you up there in four years time!”

I’m disabled, but I’ll never be at the paralympics.

I have Chronic Fatigue Syndrome.

Most disabilities, I think, are “like” (metaphorically) having some part of your body or some sense or faculty tied up with rope. If the disability is partial then the ‘rope’ is loosely tied – there’s still a bit of give in it. Being paralysed is like having your lower body tied up. Being blind is like having your visual sense tied up.

Having part of you tied up with rope like this is, of course, bloody awful. But to a great extent you can learn to get used to it. Work around your areas of disability, find out what parts of you do still work. But what if the ropes moved and changed and were never the same? How would you adapt? How can you get used to something that’s never the same one day to the next?

Chronic Fatigue Syndrome is like that. Having CFS is like having every part of your body, and every sense and faculty – every single part of you – tied up with extra strong rubber bands. Nothing is quite like it used to be, and you can move a little but you never know when the rubber bands are going to PING right back and that hurts a lot.

You can never know where you stand with CFS, except that that you’re going to lose in the end. The harder you push against the rubber bands the harder they ping back at you and the more the pay-back hurts. On different days, and for different people, the rubber bands ping back at different times.

All you can do is try to guess when the rubber bands will ping and not push quite that far. You have to push some against the rubber bands or you’ll get sicker through things like muscle wastage – total bed rest isn’t a good idea if you can possibly avoid it. But finding that area where you are pushing but not pushing too much is almost impossible. Especially when the definition of ‘too much’ changes from day to day and even hour to hour.

But don’t rubber bands get looser the more you stretch them? The CFS variety don’t. The more times a CFS rubber band PINGs back at you, the tighter and stronger it will get. With many disabilities you can train and push your way through limitations. Once you accomplish something it’ll be easier next time. Not so with CFS. If a CFS patient tries to push through their limitations, the rubber bands PING right back stronger than ever and next time even less can be accomplished.

All a person with CFS can do is do their best and accept that the rubber bands are there. You can’t ignore them, you have to take them into account in everything you do. You have to try to avoid pushing too far and getting the ping-back of a crash, but also accept that sometimes it will happen.

Just do your best.

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