A tough week

This week has been quite tough. After writing my blog on Monday, I went into college in the afternoon. I didn't have to get up a sparrow's fart this week, so thought it would be a breeze. I arrived at my workshop and within 30 minutes, my symptoms started up. My shoulders got tense, I started to get a headache and my eyes got sore. My head felt really tight and the mental fatigue kicked in. I stayed for another 30 minutes and left as soon as the workshop ended. I went into the canteen, did my RT and all I got from it was 'I really don't want to be in there' and 'eat'. So I ate and then left.

The headache was a really horrible migrainey headache. I came home, relaxed for a few hours, took some paracetemol and then went over to my boyfriends for dinner. Driving was fine, strangely enough. Don't understand that at all.

The next day, I got up early, went into college and managed to stay for 3 hours without a problem. Don't understand that either. In the evening I had friends round for a clothes swap party. I still had this horrible headache in the background though. I had done some RT on it, but was just getting a 'stop going on the computer' message which I had taken notice of and had only briefly checked emails and surfed for 15 minutes.

On Wednesday, I had a lie in and felt ok at first. When I turned the computer on, I felt the headache still there, so decided to keep off the computer again. I had a chilled day and did RT on the headache. I wasn't getting a very strong message, but I did feel like I wanted to have a relaxing bath. I did that and whilst I was in the bath, I connected with bodymind and was reminded that I really benefit from having hands-on relaxation stuff, like shiatsu and massages. After my bath I immediately contacted the college beauty salon and booked a massage for this morning and a facial for next week. I'm going to do this regularly, probably every fortnight, which is part of my RT.

On Wednesday evening I wanted to go to belly dancing, but was worried about the symptoms I was having. Headmind was going, "what if your symptoms have changed and this is a sign that if you over-do it, you'll relapse?!" I phoned my friend who is also doing RT and she helped me get over the fear and go with what bodymind wanted to do. I went to the class and I really enjoyed it. Once I was there, the fear had completely gone and I didn't feel the need to hold back.

The next day, I felt great. Much better than I have felt for about 7-10 days. I feel really relieved, I have my energy back and feel back on track with the RT too.

I do feel as if my symptoms are changing, which is quite unnerving. I am so used to my particular symptoms, how they occur and how they feel - it is not a nice place to be, but it is a safe place to be. This is a challenge because I feel as if I am no longer anchored and anything can happen.

Also, I think focusing on symptoms so much can have a 'can't see the wood for the trees' effect. I have become so aware of my symptoms that I have forgot to notice how drastic the improvements have been. In a week where I am experiencing my symptoms at an intense level, I am still able to go to college, see my friends and my boyfriend, go swimming and drive. Having the symptoms does hold me back. They affect my emotional energy and they affect my vibrancy, but they are not limiting my life in the way that they were before RT.

I am curious to see what happens in the next 2 weeks, now my symproms have subsided...

lost the faith...for a minute

The last few days have been a bit odd. Not difficult exactly, but my mental energy has been flagging a bit. I had expected it to pop back up again over the weekend, but it didn't.

I went to Tesco yesterday and found it really difficult. I could feel that panic that you get when you think that you're not going to be able to manage whatever it is you are doing. I just kept telling myself, it's fine, I don't need to rush, just do it in my own time. I got back to my car and did my RT and sat quietly before driving back home.

When I got home it kind of came to me about the whole chemical memory thing. When I first got ill, I can remember being in Tesco, pushing a trolley round, thinking that I was going to collapse. I remember feeling panicky then. I wonder if it was because I was pusing a trolley (a small one)? I usually take a basket and only get one or 2 items and do my big shop on the internet.

Anyway, I got home and instead of resting (pacing), I changed my activity (RT) to something that I like doing, then went over to my boyfriends house. I was still a bit mentally fatigued, but it wasn't intense like it was in the shop and the panicky feeling had gone.

Lat night I was questioning the RT and whether it was working or not. I don't seem to be getting the massive increase that I had when I first started it, but like I mentioned before, this hasn't been the best month. I've also added 2 new things to my weekly programme recently (college and belly dancing), so maybe I'm misjudging my energy and have more than I think.

Anyway, this is all headmind stuff. When I sit quietly, allow my attention to go to my body, feel the sensation of weight in my body and the sensation of my body against the sofa and my feet on the floor, bodymind is quiet. That is the most important thing for me to remember, if bodymind is happy, then the rest is just the chatterbox, headmind. I still think this is the way forward for me.

Correspondence with John Eaton about the high price of RT

Hi John Eaton

I have been having RT with Georgiana Nye in Bristol since July of this year. My health has improved significantly over the past 3 months as a direct result of RT. For me, a big part of it's success has been Georgiana's approach as she is a fantastic therapist and a lovely warm, encouraging person. I'm really impressed with her and RT.

I do however, have one complaint to make on behalf of lots of people that I know with ME. You probably know what I am going to say already, but it is to do with the price. I understand that there are cost implications in delivering the training, supervising the therapists etc, but I really do believe that you are shooting yourself in the foot with pricing so high. I know from the community of PWME of which I am part, that many of them are put off by the price for 2 particular reasons.

The first is that they simply cannot afford to see a therapist twice a month at £80 a go, even if it does then extend to 3 weeks, 4 weeks etc. Most of the people I know with ME are unable to work, so where can they get the money from? I decided to get an overdraft, which is not ideal.

The second reason is that the price, which is much higher than pretty much any other type of therapy, feeds people's uncertainties about the genuineness of your organisation. Lots of people think that it is a 'rip off' or that you are simply exploiting vulnerable people. I belong to a local forum with about 50 members and I would say the majority of them don't trust you and I know from discussions that the price has a lot to do with that. I really feel that you are doing
yourself a disservice.

From my personal experience, I rate RT and I rate the therapist that I saw. I have kept a blog of my RT experiences so that others can benefit from my experience and I know that many people are watching to see what happens to me. What would be really great now, is if you could acknowledge that the price is prohibitive and lower it so that people don't fret about being conned out of money that they do not have. I'm not writing this to try and get my sessions cheaper as I don't plan to have any more. I am almost at the point of being discharged after 3 sessions, so would consider RT to have been successful for me.

I would appreciate a personal reply from you. I can let people on my forum know if you are willing to shift on price, which may mean that others take it up, where they may not have before.

I look forward to your response.

Miss B

-----------------------------

Dear Miss B

First of all - congratulations on your recovery. I am always touched when I hear of yet another person getting their health and their life back with the help of RT.

Please also allow me to come to the point:

I do not actually agree that our fees are expensive given that we are not government-funded. Private Doctors and Psychiatrists - who have nothing to offer people with CFS - will charge upwards of £150 per hour. Cognitive-Behavioural Therapists (who claim to have a remedy for CFS but don't) will charge £80 per hour or more - and the minimum length of
treatment is usually One year!

The fact that a therapist charges £80 per hour does not mean that she earns that amount. She will also need to pay rentals, insurance, registration fees, travel and other expenses. For each session she can also expect to do a further 30-45 minutes in Administration and Supervision.

For me, the real argument here is about government funding. So far the NHS has not yet recognised RT as treatment of choice for CFS. When it does many patients will be able to receive RT free of charge. While we are working extremely hard (unpaid of course!) to set up clinical trials and set up a dialogue with NHS decision-makers, they remain a slow-moving,
conservative and medically-biased institution. It may take years before we can acquire funding. Perhaps members of your Forum should write to their MP and demand that steps are taken to speed up this process?

In the meantime we are aware that many sufferers are on benefits or on low-incomes. Mindful of that fact, we ask all our therapists to reserve two places on their list for low-fee patients. Provided that the client is able to prove that they are on benefits the therapist will reduce the fee to £50 per hour if they have places. Please do be advised, however, that there is
usually a waiting list for these places.

I hope this answers your question fairly and that you can see that our fees are not unreasonable. Please feel free to quote this email to your colleagues.


With Best wishes

Dr John Eaton PhD
Director
Reverse Therapy UK Ltd
www.reversetherapy.com
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Hi John

Thanks for your reply. I would say that it terms of my recovery, I don't consider myself to have my life back yet, but I'm on the way.

In response the rest of your reply, I'm aware that the £80 goes to cover lots of administrative costs, but I think we will have to agree to disagree on this because despite your reasonings, I still think the price is too high. I understand that there is a gap between what us people on the ground floor need and what people offering services can supply in terms of funding.

I agree that RT should be provided on the NHS, particularly as when I personally visited our local CFS/ME clinic in Bristol, there wasn't anything on offer for me as CBT and graded exercise where not deemed appropriate. I do not however, wish to get involved in campaigning or the political aspects of all this, because I know from previous experience that it frustrates me and drains the energy that I have. I also use a lot of my energy being involved in the local group. Maybe when I have energy to spare, I might be more willing, but I need everything I have for my recovery right now.

I will let people on the Bristol forum know that there are low-fee places available on a waiting list basis, which is at least a step in right direction from a pwme's perspective.

Thanks for responding and good luck with all the work. I really hope that the gatekeepers of the NHS can eventually judge RT on its outcomes rather than looking for research to prove that it works. If my story will contribute to that in any way, you are more than welcome to use it (littlemissreverse.blogspot.com).

Miss B
-----------------------------------

Thanks Miss B

Well, I do hope you get your life back as well, very soon.

Kind regards JOHN

Best wishes

Dr John Eaton PhD
Director
Reverse Therapy UK Ltd

Mental fatigue

I've been waiting to see if I had a backlash from going swimming last friday. I was a bit tired on Saturday, emotional on Sunday and tired and emotional on Monday but that's linked to my new found PMS and getting up early.

I've been waiting for the crash and I don't think it's going to come now. Don't get me wrong, I've had some ME symptoms over the last 6 days, but it seems to have been mostly mental fatigue and the things that go with that such as tension in my neck, headaches and tired, puffy eyes. I have still been able to be active and have done quite a lot, I just haven't had the mental stamina to enable me to keep going. This is a new thing for me. Physical activity and mental activity used to trigger flare ups and bad days, but it seems to have switched since doing RT to mostly mental activity.

I have been driving a fair bit and using the computer a lot too and these are the things that I've been having trouble with whilst I've had my period.

I was talking to my boyfriend last night and he said that he didn't think I'd had a good month and had been tired quite a lot. I have been tired quite a lot and I have been fatigued too. From the outside I don't think there appears to be much difference between seeming tired and seeming fatigued, but to me, its a major difference. I don't mind feeling tired, its' quite nice and I just feel relaxed and sleepy. Being physically and mentally fatigued is a tense state, it interferes with my sleep, stops me from doing things and is not pleasant. I'm obviously going to feel tired as I increase my activity because my stamina and tolerance need to be built up.

Even though it hasn't been the best month so far, I have still increased my activity on last month. I'm hoping this next month will prove to be a bit easier.

John Eaton's RT web link and low fees

Just discovered that the link to the John Eaton Reverse Therapy site was not working. Have corrected that now, so it works.

Also just discovered from emails with John Eaton that they do offer a restricted number of "low-fee" places to people who are on benefits. There may be a waiting list for these places. They cost £50 per session.

jobsworth rant!

This is just a rant, not particularly relevant to RT, but I'm pissed off and want other people to understand how difficult having this illness is, even when you are getting well.

After my tutorial today, I realised that if I went and rested somewhere quiet for half an hour, I might be able to manage the workshop in the afternoon for an hour. I went to the library and found the 'quiet' area, tucked away in a corner where hardly anybody could see me and sat at a table with my head on my arms for a rest.

About 10 to 15 minutes later, a librarian came round and told me in a very abrupt manner, 'You can't sleep there! You'll have to go somewhere else'. I said, ' well can you find out from disability where I can rest, because I am disabled and I need to rest inbetween lectures'. She said, 'I'll get someone down to see you'. She went to get someone down and then came back and told me that the rules apply to all students and that if I was disabled I should go to disabilty and tell them what I need.

I just get so frustrated sometimes. I didn't plan this. I didn't even realise until 12 that I had enough energy to stay. I didn't know that I wasn't allowed to rest my head on my arms in the library and if I had known that it would cause such a stink, I would have gone straight to disability support anyway.

So someone came down and it was the lovely Beks who always looks after me. She took me up in the lift to a quiet room and on the way I just got really upset about the whole thing, which ended up using up more energy.

I was just trying to meet my immediate needs but because you don't fit the norm, you face barriers all the way. I know it's not a major injustice, but sometimes you don't have the energy to challenge and having a rather abrupt jobsworth being quite unsympathetic just makes it harder. If she had spoken to me as if I mattered it may have made all the difference.

Anyway, I blame the headache on her!

ooh my head hurts

In my last post I mentioned that I went belly dancing. By the Friday, I felt fine and my aches had reduced a lot, so I went swimming and went to bed at about 11pm.

On Saturday I woke up at 12.30pm (13 and a half hrs sleep!) feeling a bit tired but OK. I know that my sleep going right up like this is a warning not to do to much more physical activity. I still decided to do part of my college assignment though, which involved going out and taking photographs. That went fine and I felt good until about 6pm, when my energy really dropped. I felt tired though, not fatigued and just decided to have a very chilled night at home.

Now, it is that time of the month again and wouldn't you just believe it, the same old pattern. I woke up on Sunday, suddenly having doubts about my relationship and getting paranoid (this is becoming a regular, bi-monthly feature - ooh what shall I get anxious about next month?), so spoke to my man and we sorted it all out very quickly, like bodymind wanted me to. I also did some RT in the evening after going on the computer.

This morning I woke up at 6.30am. This is an ME flare up thing for me. I lay in bed until 8am then got up, got myself sorted and went into college. I was tired before I started, but managed the 2 hour tutorial. I realised at that point that although I felt absolutely shattered, my eyes were really puffy and my brain felt tired, that I could feel all these things on some more surface level but underneath I felt OK. It's really difficult to explain.

I know that these 'symptoms' are brought on by my period and this month is the first time I have felt them as symptoms of PMS separately from the ME. I didn't feel fatigued in my body and I didn't have the tension that runs across my shoulders, up my neck and across my scalp. The sleep thing is the ME, the rest of today I can put down to PMS. It's not been the best day (see my next post). it's not exactly what I wanted, as I don't want to have ME or PMS, but I think it is a step forward.

Actually, maybe I should mention that after the last one, I decided to start taking Agnus Castus, which is recommended for PMS. Also about a week ago, I decided to go belt and braces and bought some Milk Thistle too.

I still have some days to go, but if this is the severity of the flare up this month, then its not nearly as bad as before, even though I had a migraine style headache earlier and had to go to bed until the paracetemol kicked in. Can't be too bad if I'm able to write this, but maybe I shouldn't push my luck!

Confusing

I've had a bit of a confusing week. I had to get up at 7.30am on Monday to go to college (urgh!), which my body didn't like very much, so by about 12 I was quite tired. Thing is I stayed up til 2am on Saturday night aswell. I wasn't really sure if my tiredness felt like M.E. or normal tired, so I didn't do any RT. I was tired on Tuesday aswell, but again, wasn't sure.

I also had a mix up with my meds. I went to take my 20mg of Amitriptyline on Tuesday evening and discovered that they had reordered Temazepam by mistake. I only took Temazies in a very difficult patch last year and definitely should not get it on repeat prescription. Anyway, the thing is I had run out of Amitriptyline and tried to sleep without it, but no luck, so ended up having to take half of a Temazie. End result, woke up feeling groggy and a bit tired yesterday. Again, I didn't do any RT on this.

I'm not so certain of what is a symptom that requires RT action and what isn't at the moment. Maybe that is because my symptoms are becoming more subtle, maybe its because I'm not actually having symptoms or maybe its because I'm using my head and not bodymind to work it out. Not sure, bit confused.

Anyway, on a positive note, I tried something really adventurous last night. I went to a Belly Dancing class. I've been wanting to do this for a long time, but have been scared of over doing it as it can be quite energetic. The class was a beginners one so wasn't particularly strenuous (for a healthy person!). We just learned how to hold our arms, move our hips and shake our bums, but I worked up a sweat. Although my arms and legs ached and I got stitch it my side, I managed the class. My sleep last night was a bit disturbed, but I don't feel too bad today. My muscles ache just about everywhere, but its not unbearable, feels like a healthy ache and I am tired but not fatigued. fingers crossed that I don't get a backlash in a day or two.

Why I think it is the RT and not just good luck

I thought I'd try and explain why I think it is the RT that is responsible for my improvements and not just the way things would have gone anyway.

I started my RT on July 18th.

Between January and July, I improved a lot. There have however been fundamental differences between the improvements I have made pre and post RT. That is what I will try to explain.

Before RT, I was gradually increasing my activity. I would do something for example, go for a walk and I would possibly get away with it the first time. I would increase this and at some point I would get a flare up. By that I mean the floppy fatigue, brain fog, disturbed sleep that comes on the next day or a couple of days later and takes days or weeks to shift. Now we all know that is one of the trade marks of M.E.

It happened with gardening too. I did gentle gardening, for 15 minutes, got away with it, went up to 20, that was OK, then 30, that was OK, then fogot to watch the time and did about 40 minutes. That time, I crashed and it took me 2 weeks to get back to normal. I have found it difficult to get the balance right when increasing and regularly go over my limit, just a bit and pay for it in days or weeks. That was before RT though.

Since doing RT, I have been increasing my activity, particularly the physical stuff. I have not had an M.E. flare up as a direct result of what I have done. I have had a couple of flare ups, one because of my period and one because of a bug, but not because I have walked too far, or swam too much.

I can still feel the remnanats of these symptoms, particularly at night. For example, yesterday I went for a swim after not swimming for a couple of weeks. I swam the same distance that I did last time. During the night I woke up and my head was saying, 'oh no, you overdid it!'. Flippin headmind! I thought I wasn't going to get back to sleep, which is what would have happened before. Anyway, the next thing I know its 9.30am. I can feel tension in my neck, but it doesn't feel like the tension I get in my neck which is a symptom. This just feels like I used the muscles across my shoulders, which I did because I swim breast stroke.

I think the key to this is constantly checking in with Bodymind. I regularly stop and do a quick scan and if I can't feel any symptoms, I continue. I also think that the reason why there has been a shift pre and post RT is because of the symptom message. I really feel that it is reprogramming my brain. Finally, if my bodymind says, 'I want to lie down and rest' that is what I do - I try not to push myself against bodymind, but I do push my body gently. I don't know if that makes sense, but I think you have to work out what are M.E. symptoms and what is just normal body reactions to increasing activity. Normal aches are OK to push gently, but symptoms are not.

Anyway, I just want to say that all this is just my personal experience and personal opinions. RT may not work or may work differently for others - I think you have to find a route that speaks to you. I'm just hoping to add to the available information that is out there on RT, because I couldn't find much.

Feedback from my therapist

I contacted my therapist last week as I was having a rough ride and needed a bit of clarification. That was before I'd worked out the bug thing. Anyway, my therapist gave me some tips, so this is what she said in relation to my flare up:

*Have you, looked at it more long-term? ie what turn generally has your life taken in the past few days?

*Have you been able to keep balance, variety and enjoyment going, or has there been a shift away?

*Are there concerns, that have been creeping up on you?

*Is there an element of conflict looming in the future, or around now that you have not dealt with?

*Are there any worries (long-term or short-term) that are lurking around?

A general scan around might give you some clues that would indicate a response from you. Does your symptom message seem relevant in these present circumstances?


I did the RT, looking at it using these ideas and came up with some very loose ideas, but I don't think they came from bodymind as I didn't get the physical sensation that I get with strong bodymind communications.

The things I came up with were:

I'm starting back to college next week (possible subconscious anxiety, but I'm not consciously aware of it).
Things have been out of balance because of my symptoms, not the other way round, as they were completely out of the blue.
The little niggle I mentioned in a previous post has been dealt with, so probably not that.
Can't feel any long term worries at the moment.
Not aware of any conflict at the moment.

I did a general scan, by sitting very quietly, focusing on my body and asking it if there was anything that I needed to look at and I didn't get anything.

I have 3 symptom messages and I have found one of them to fit each time I need to use the card, so I think my symptom messages are OK. Actually, whilst I was just writing that, I just got a flicker from bodymind, so maybe I need to look at my symptom messages after all. Strange old business this!

OK, that is useful, I think I need to find a symptom message to fit the hangover/groggy/feeling rough symptoms. The ones that are just there when you wake up.

Detective Miss Bristol, signing off.

bug

Just spoke to my friend Sarah, who has been ill over the weekend with a stomach bug. I saw her on Wednesday last week, before I had my flare up. My flare up began with diarrhoea and then I felt wobbly, fatigued and had a craggy headache for few days, just like Sarah!

I kind of wondered if it was a bug but it didn't develop so thought it must be the M.E. Now I think my body was fighting it off and that's why I felt so horrible. It's a bit wierd when your body starts to react normally to things - think it's a good sign.

That also explains why the RT didn't seem to fit and why, when I actually remembered to do it, bodymind was very quiet. It's really hard not to get into analysing it all and that is obviously what I do. Must remember to go with the feelings - the gut feelings (hee hee!).