Heat.

Over the last few years I have noticed my body temperature has risen a little. This was compounded one Christmas when my GP sister-in-law produced a new-fangled thermometer to check the temperature of one of her children, and we had to pass it round the breakfast table and all have a go. Out of the 16 present, everyone measured within the 37-37.5C range. Except for me. I had a temperature of 38.5C. This is still within the normal range, but might indicate that I'm sickening for something. Actually, I felt about as good as I ever do that day.

One of the things that baffles a lot of my clients is how much I start to sweat when I do energy work such as reiki or reflexology, but this is quite simply explained. I'm hot. Anyone who has ever had a treatment with me is likely to have noticed that my energy is very hot, and can raise the room temperature by a couple of degrees over the course of an hour. Imagine what that is doing to my body! That is the reason that I will turn up in a short-sleeved shirt for treatments in the middle of winter.

I've learnt recently that this is really common amongst chronic fatigue sufferers, and is known as ME Fever. It's not a literal fever, but more an increased temperature as the body tries to fight off an infection that isn't there. If you imagine that is what is going on inside the body of someone with ME, the tiredness, the aching and the compromised immune system all make perfect sense too. And it also explains why so many people are first diagnosed with post-viral fatigue before being 'upgraded' to ME or CFS.

All of this does, of course, make summer quite hard work. The moment the ambient temperature increases at all I get hot and sticky, and don't want to do anything other than take cool showers and lie on the sofa in front of a fan. Knowing how bad that is for my Boom and Bust tendencies, I continue to plod on through the summer months, stopping for baby wipes and fresh clothes whenever I can. But even amidst the mediocre summer we're experiencing at the moment, I do find myself looking forward to autumn.

Tentacles.

The problem with being self-employed is the difficulty with getting your name known. I've done a couple of health/beauty/psychic fairs, which I think is helping. I love doing them though, so it's not the end of the world if they don't help. The thing is I know I'm good at what I do. I just don't know how to let the everyone else know.

I've tried advertising through the Kings Hill Directory and the Yellow Pages. KHD was quite good, but it was too expensive to keep up without getting enough people coming back to me from it. I needed one treatment a month simply to pay for the advert, and another to cover the overheads of the first treatment. Yellow Pages was a nightmare. It cost a fortune, and I was plagued with phone calls from other companies trying to sell me more advertising. Not a single person so much as looked at my website with an interest in what I do.

The problem with holistic therapy is that people don't look in the usual places for it. If you want to try reflexology, say, you don't turn to the Yellow Pages straight away. You ask your friends whether they can recommend someone. They give you a business card, and you find your therapist that way. Hands down, the best way to do it. This means that the way I need to get myself known in the area is... to be known in the area. Pants.

My new way of thinking is that I want to get people through the door. I don't mind not making money at first, as long as I'm not losing any.* After all, I'm not making any money now. I'm thinking about offering discounts to local businesses who want to send their employees along in their lunch hours, and having offers on particular therapies to get people to try something new. And I've got a couple of beauty/health/psychic fairs lined up, which are always good opportunities for mingling. Basically, it's time to get my tentacles out as far into the community as I can.

*Successful advertising doesn't count as losing money; that is investing. Unsuccessful advertising on the other hand...

Wake me up before you go-go.

Is it just me, or is it ridiculously difficult to get out of bed some mornings? This morning I was given a helping hand getting out of bed when I woke up to an enormous crashing sound. Worried about Robin, I leapt into action before I'd quite finished opening my eyes to check he was okay. He was. Which is more than can be said for the kitchen, as the shelf holding all of my cookbooks had taken a spectacular dive towards the floor, taking the contents of the kitchen table with it. While Robin gathered up all of the books and drill bits (which I had left on the table after my bathroom DIY escapades yesterday), I swayed dangerously on the spot before turning around and heading for the sofa to regain my sense of balance. Even on days when I manage to spring like an ungainly gazelle from my bed, I have trouble staying in action for more than a few minutes.

Usually it takes me a bit longer to manage that first step. When we need to be out of the door for a certain time, we have to set the alarm at least half an hour earlier than we should need to get up to make sure that I will actually be able to stand up in time to leave. What we always forget is that when I wake up of my own volition it takes me half an hour to come to. It takes considerably longer if I have to be roused by the infuriating buzzing of my alarm clock.

I have developed a little trick to bring me to a little faster. Basically, I lie on my back, kick my legs into the air and waggle for a couple of minutes. This gets the blood flowing, and will usually allow me to get straight up from there. The real problem comes on mornings when I don't have either the strength to kick my legs up in the first place or the wherewithal to remember that this trick can help to speed up the process. Luckily these days are becoming fewer and further between, but they do still seem to be annoyingly existent.

Even when I've managed to get out of bed without faceplanting into the carpet (or anything else, for that matter), I don't function correctly until I've sat upright for a while and poured at least 2 pints of water into my system. That's half of the government's RDI, for anyone who's keeping track. I've managed to get enough of a routine to do the important things in the morning, but beyond that I'm useless for a couple of hours. If you don't want me to feed the rabbit, feed myself, take my medicine or check my email, I don't know what you're asking. That's why my appointments tend to start from about 11am.

Twice this year I have woken up feeling less tired than when I went to bed. Given that this is August, that would be a shocking statistic for anyone not affected with ME. I wouldn't go so far as to say I felt refreshed, but after 9 years of illness those two mornings are ingrained on my memory as being some of the best mornings in memory. As my memory is also failing, that's perhaps not the complement it could be, but I'm still proud. If I could make it to the hat-trick by the end of 2011 I would be a very happy girl.

Boating.

I've just got back from a week's holiday. I feel all refreshed, after spending some time on the canals in a narrowboat. It's something we do about once a year, because it's so relaxing.

For anyone who hasn't been boating before, the premise is very simple. You board your boat, head off at up to 4mph (walking speed), and then when you reach a convenient spot you stop, moor up and spend your evening relaxing however you choose. For us, that is to cook a meal in the small galley, watch a DVD and then get an early night. For many other boaters, it is a great way to visit every pub within walking distance of a canal over the course of a week. Basically, it's a plusher form of camping with the tent carrying you between pitches rather than the other way around.

At the start of every holiday on the boat, I look down at the ladders to get in and out of the living area, and can't imagine how I'm going to manage the whole week. I wobble, I groan, I heave, and I manage to get back up onto the deck. I spend a couple of hours at the tiller, and then I start to feel relaxed, refreshed, and even a little bit more human than usual. I don't know what it is about the boat, but something manages to really ease my condition. It might be the slower pace of life that you experience when nothing happens faster than 4mph, it might be the extra sunlight I get as I sit outside all day, or it might be the fresh air. All I know is that by the end of the week, I'm leaping up and down the steps like a seasoned seadog.

As you can imagine, it is a very peaceful experience. If you take enough food with you and choose to stay on board and moor up in the middle of nowhere, you can pass a whole week without really colliding with non-canal civilisation once. You might pass roads and pubs, but they are gone just as quickly as they arrived.

I know that boating isn't for everyone, and that there are plenty of people physically worse off than me who aren't able to give it a try. I think the point I am trying to make, though, is that there are activities out there that look horrendously painful at first, yet seem to actually provide a sense of enormous relief if you persevere a little. For me, the benefits of a week on the boat each year definitely outweigh the initial pain of trying to manage the steps on the first couple of days. I have a special stool to allow me to sit at the tiller rather than try to stand, and I have a very helpful man who bends down to fix the ropes to the moorings in exchange for me tying the knots (I am a Girl Guide, after all!). My boating experience isn't entirely disability-free, but it does feel like a very 'normal' activity, harking back to my pre-accident days.

That said, narrowboats can be adapted for wheelchair users, so there's no reason why the physical limitations should be the be all and end all...

Boom and Bust.

Wow. What a busy weekend. On Saturday Robin and I went down to Eastbourne to eat chips and doughnuts on the pier and then see Anything Goes. Yesterday I went running round a cave dressed as a rabbit (don't ask). All in all, today I am exhausted.

I've reached the stage in my illness where I no longer seem to be crashing after partaking in even the slightest hint of activity, so although I'm very tired and aching today I actually don't feel too bad. All my instincts say that today is a day to sit on the sofa and rest in front of the TV, but I've decided I'm going to overrule them this time.

I have a good friend who is also an ME sufferer and she found that she began to feel much better once she learnt how to pace herself, which involves 5 minutes of rest, 5 minutes of mental stimulation (even watching TV or reading is enough), 5 minutes of rest and then 5 minutes of physical activity (such as doing the laundry and all those things that make me wince). Rinse and repeat.

I hadn't tried this method of pacing until very recently, and I am finding that it seems to keep me more level in the long run. I still have days where I don't do it, such as when I'm at the theatre or running about in fancy dress, but on all of my regular, sofa-bound days I am now making sure that I routinely add a little mental and a little physical activity into my day. Rather than chilling all day and then going for a nice long walk, I'm chilling while I watch TV and springing into action when the adverts come on. It's not quite as structured as my friend's method, but it seems to be working for me.

It is really hard work on some of my rougher days, trying to find the energy to get up and move about every 15-20 minutes or so, but it does seem to be bringing my energy into alignment so that I'm not really experiencing boom and bust any more. It's more good day/bad day, and at the moment that's the best I can hope for.

Something for nothing.

So by now we all know that I am a Brownie leader, and very enthusiastic about it.

My Brownies, together with the local Guides, are holding a pamper afternoon for Mums, girls and assorted hangers-on (well, it's not exactly an invitation-only event) to raise money for new heating in the Church who very kindly let us use their hall for a pittance each week. I've been trying to find local therapists who are willing to come along for an afternoon to help out. They don't pay anything to be there, but all they make on their mini-treatments will be going towards helping out the Church heating fund. They can sell vouchers, take bookings, and get some free advertising in exchange for 3 hours of their time for a good cause. Sounds like a good deal to me.

But sadly very few therapists are coming forward to help out. It seems that people are not willing to do something to help a local charity unless they get something in exchange. It doesn't matter that they have an audience to whom they can sell their vouchers and make future bookings - they just don't seem to want to perform their mini-treatments for the monetary benefit of anyone other than themselves.

This makes me very sad.

I got into holistic therapy because I wanted to help other people, and the money side of it followed on behind. I offer free consultations and am always happy to take part in charity fundraising ventures, especially if I get to advertise too! Based on the experiences I had as a therapist down in East Sussex, I assumed that this was the normal attitude of holistic therapists, but I am finding more and more that I seem to be alone in my altruistic motives in this part of the world.

I've started approaching people directly, rather than asking groups generally, and I am hoping that some of these people will step forward and renew my faith in therapists. Surely there has to be a desire to give and help underneath the desire to become a therapist? Or perhaps we don't see advertising through Pamper Fairs as tangible because we don't receive a printed copy or see it on our computer screen? I can see no better way of advertising than by associating yourself with a good cause and talking to people face-to-face. But maybe that's just me.

Maybe we're just taking some simple principles too far. Reiki actually requires some form of payment, either in terms of money or by offering something in fair exchange. It is known as the Reiki Exchange. When Usui, the father of Reiki, first discovered that he could heal other people with this amazing energy tool, he rushed straight out into the streets, and started healing beggars of whatever caused them to be homeless. The beggars were leaping up, and rushing back into the world, completely renewed. After a week, however, Usui found that they were returning to their old ways. Without offering something in fair exchange, they felt like they were not receiving anything of value and were unable to maintain the healthful, positive way that their bodies were now functioning. Usui realised that because Reiki is intangible, people find it hard to accept unless they feel like they are offering something in fair exchange. After all, nobody will ever give something for nothing, right?

Massage.

I recently went for a massage. It was lovely. But I completely unnerved the masseuse when I tried to explain fibromyalgia to her.

"So," she said. "You have pain... all over your body?"

I explained that yes I do, and I'll let her know if she finds a spot that needs to be avoided, or tell her if the pressure is too deep for my liking. Being quite well versed in different types of pain and the way that massage works, I don't find it a particularly scary prospect. Unfortunately, that's not usually the case for the poor girl on the giving side.

This got me thinking about chronic pain sufferers and massage. If you're not really familiar with different types of massage, it must be quite worrying presenting your back to someone who doesn't know your condition inside and out, and inviting them to apply pressure and potentially cause some severe pain. That's why I've made a list of some of my top tips for choosing a good massage if you suffer from chronic pain.

1. Choose your 'type' of massage carefully.
Do not opt for a sports massage unless you know what is coming. They hurt.
A Swedish massage is the safest bet - any massage that simply calls itself 'a massage' will almost definitely be Swedish. They use long strokes and are designed to relax rather than work out every last knot and kink.

2. Tell your therapist exactly what you need from you massage.
Be completely open about your pain, and remember to warn your therapist about any spots that are particularly tender. They might use particularly light strokes over that area to avoid aggravating the pain, or they might even have some gentle techniques that can help that area to relax slightly.

3. Feel free to communicate what you want during your treatment.
If you find that the massage is too rough for you, ask for a lighter pressure, or slower movements. If you feel like it's good but one area needs more work, say so. The more feedback you can give your therapist throughout the treatment, the more they can tailor their touch to create better results for you.

4. If you are worried, start with something different.
If you really fancy going for a massage but dislike being touched or are concerned about whether the experience might cause a flare, try starting with something like reflexology. Reflexology involves massaging the feet, so feels wonderfully relaxing without approaching the more common tender spots. This gives you an opportunity to experience the level of touch involved without having to remove more than your shoes and socks, and without having to risk the pain of a full body massage.

5. If you're still unsure, try something more specific.
You can get a very nice, comfortable, thorough massage from a physiotherapist or osteopath, who will be more familiar with chronic pain conditions, and may even be able to help relieve some of the deeper knots that massage simply can't reach. You can also look for massage therapists who specialise in chronic pain, as they will be able to give you the gentle and relaxing experience without the fear of irritating the condition.