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I was planning on writing a thorough review of the book How To Be Sick by Toni Bernhard, but I am taking advice and guidance from Michael Nobbs in his new ebook Sustainable Creativity and I am keeping my tasks simple and manageable. If I write a short review I can get it done today and have a sense of achievement, rather than not finding the energy for days/weeks and having the task hanging over me. He also encourages us to not care if something is not perfect, allowing us to get on with our day. This review will not be well honed but I hope it will be good enough. I am not even going upstairs to find the book to refresh my memory before I start!

In How To Be Sick, Toni combines the experiences and challenges that chronically ill people face day-to-day with Buddhist teachings in a very effective and seemingly effortless way. It does not feel like the chronic life is being forced to fit into a paradigm, it is as if these two things were meant to be thought about together.

I found that I did resist buying this book, despite the good reviews. As someone with very longstanding ME/CFS  I have become wary of self-help advice. Often it is forced onto us, inappropriate, claiming to cure, patronising, making assumptions about us and so on. Or we seek it out ourselves and get “self-help fatigue” on top of the illness itself as we work so hard to challenge ourselves, examine ourselves and change ourselves and just end up twisted in knots feeling no better, calmer, stronger or healthier. We then feel a failure and I for one no longer take part in these activities. I suspect I am not alone. Who, when chronically ill, has the energy to keep constantly looking at themselves in such an intense manner?

So against this backdrop, Toni has bravely approached the problem in a new way. It really does feel so refreshing and when I actually picked up the book and started reading I felt no resistance. It is written in an easy to understand, absorbing, humourous way (I laughed out loud at a bit about Sarah Palin!). Most importantly she takes us on her personal journey and explains how difficult she still finds some of the practices, rather than saying she has reached some level of perfection (enlightenment!) and therefore effortlessly copes with all day-to-day stresses and restrictions on her freedom. Of course she doesn’t, she is only human, and that approach allows us all to have a go, Buddhist or not.

It is really refreshing to read the examples she gives as I had also found myself in these exact same situations. Perhaps it is because Toni has ME/CFS and POTS as I do, that our experiences are so similar, but I expect that actually the experiences of chronically ill people are more universal, regardless of our specific conditions, than we realise. Which begs the question: Why is our experience so marginalised and misunderstood, even by people whose job it is so see us regularly, ie medical professionals? (See previous posts for where this issue is coming from for me!)

I have occasionally done Mindfulness of Breathing meditations over the years, in phases. I first started before I became ill when a monk came onto campus once a week when I was at university to do a guided meditation. I found very powerful and energising at the time. While it is harder to do in a body which is constantly uncomfortable and without your own monk to guide you (!), I have found that being guided by a recording is also good. The book made me see this practice in a new way and I feel encouraged to keep doing it and getting more and more from it.

Lastly I would like to say that even if you know nothing about Buddhism, this book is very accessible. It has sparked an interest in me to look at it further, especially the specific concepts that Toni works with in the book. (Michael Nobbs actually posted a link on his website to Audio Dharma and a talk about Embracing Imperfection, which echoed some ideas from Toni’s book. I just went to find the link to post here and see that Toni has done her own recording on the site! Small world.) 

What really felt encouraging for me was that although I had not heard of many of the Buddhist ideas in the book, I found that I could relate to the practices. I realised I have been doing some of them by myself. For example, I do enjoy the joy of others more than I perhaps did at the start of my illness, even when I cannot participate in the source of that joy (although there are some people with which this is easier to do, than with others who make no acknowledgement of your own situation! I still have work to be done.). It is nice to feel that you have made some progress yourself inadvertently just by living with illness so long.

Just been to visit my GP. (A primary care doctor, for those not in the UK – basically the “family doctor”). He is the one I have (had) settled for from the three available at my local doctor’s surgery to be “The One”. So I went in and tried to talk to him about what to expect from a GP and ask him if he is willing to be “The One”. He turned it around and asked what I want from a GP, and I said I wanted someone to have a broad overview of my situation and I wanted to be able to discuss symptoms even if there was no obvious treatment, and that I wanted to understand my symptoms as well as possible. Also that I was not looking for a drug for each thing, more the understanding. This may not have come out very clearly, or actually be the coherent description of what I do want/expect, but I was not prepared for the question, or feeling very articulate. I still don’t know what he feels he can offer, but I am getting an inkling.

He basically responded by saying that he cannot help me with the understanding and needs to refer me to the specialists for that. He says my muscle issues sound like ME so I need to see the ME/CFS specialist for that. That is fine, but I voiced my concern that he would only want me to go back to the CFS Lifestyle Management Group and that I do not want to go back, as I felt I had taken what I could from it and going to appointments is hard. He gave me a long lecture  on being open-minded (including an analogy to driving a car and building up bad habits). I tried to clarify my experiences (as surely I know more about them than he does!) but to no avial. He just wants me passed on to someone else, it seems.

He also said that this CFS specialist can refer me to the Pain Management Clinic (PMC), as if he (GP) does it and I just turn up they will not know what to do with me as general approaches won’t be specific to my condition, but if the CFS specialist refers me it will be different (I am not sure about this logic – it’s just a  referral letter). Seeing as the suggestion came from the POTS specialist, that means I am now seeing three people before getting to see that PMC. Wierd.

He did not really respond to me wanting someone to have a broad overview of my condition. When I was trying to answer his question about expectations, I gave him the example of my nerve pain and he cut me off saying he wanted general, not specific expectations. Hello? Let me finish my sentence. Try to understand what I am saying. Understand that I have cognitive issues. Stop trying to rush me into conforming to your model of what the conversation should be.

This was not helped I think by the fact that we had booked a double appointment but the receptionist had obviously not registered this so we had the impression we had longer than he thought. He started talking about booking a double and we said we had and then he said we needed to repeat our request to make sure (another lecture given) as if it was our fault, when my partner says she was very clear about it.

I also got the lecture I have had before from GPs as I mentioned I had seen nerve pain talked about in relation to POTS on a forum. Instead of trying to understand why I might use the internet, or giving me credit for being an intelligent person and being able to distinguish opinion from fact etc etc, I got the patronising talk about the dangers of finding information on the internet. If he is so uninformed (says he does not know that much about ME) when where am I supposed to go? Eh doc? I think GPs should know more about such a common condition and frankly, they should go online and read some recent research, as they are obviously not getting very good info from the BMJ/NICE.

He did say he was happy for me to give him supporting info when he had to write reports for benefits etc so that he has an idea of my situation, and instead of saying he would like to know more about it in person, he started on about the double appointments, how many hours he works, how he is not always available! Ok then.

So I have a referral to the CFS specialist and I am to go back for a double (repeat DOUBLE!) appointment in a month. While I think he is happy to see me more often, he certainly has his own communication style which is not supportive or condusive to building the kind of relationship I would like, you know, where I am listened to!?!

Well it’s been a rollercoaster of a week, but I have emerged fairly unscathed. I have surprised myself actually!

On Sunday, we went out to a concert (yes, again! Second of the year – get me! I know!). It was Frazey Ford and her band. The venue was wheelchair accessible, although it was not that easy as space was tight to get around as it was an old building. The good thing was how small the venue was in terms of audience, it was nice and cozy. I was really unsure if I would make it and the run-up was not good. I did make it, though I was in quite a lot of pain during the concert despite the painkillers and was constantly writhing about. I am sure the percussive sounds my joints were making added something to the music. I really enjoyed it and I actually love her album “Obadiah” even more than I already did as I heard lyrics I had not previously noticed (she does not always sing so clearly, not a criticism, just a fact) and also I am remembering her singing it in person now when I listen to the CD. Her voice is just amazing and we were front row (wheelchair is good for that).

 I am left in particular with some lyrics from Gospel Song going through my mind, which I find very calming and take me out of my body quite nicely: “Oh, beautiful clouds, I’ve been sailing through. Oh golden clouds, I’ve been sailing through you.” Check it out for yourself!

On a musical note, I just got Antony and the Johnsons new album “Swanlights” and I love that too though I have not listened to it many times yet. I am enjoying music more these days, though I can only tolerate certain things. It is so good, as for a while I really could not bear music at all due to my neurological problems. I am even listening to it really quietly now as I type. This is a big deal for me as I find it hard to think straight when there is music on, or tv, or any noise. It is nice to challenge myself occasionally!

Another good thing that has happened this week is that despite the difficult appointment on Monday (the day after the concert) and the fairly drastic emotional response I had to it (plus the usual payback from doing two things in a row) I managed to go for a walk with my partner in the woods along the road from our house on Wednesday. I was in the wheelchair and it felt good and did not make me feel any worse. In fact it was a great stress-buster and we were both smiling despite the greyness of the day. Well, my partner says she was smiling, but I cannot see her when we are walking. I took a few pictures along the way. They are taken with my phone, so not brilliant pictures and it was a cloudy day but I just wanted to remember it and maybe you will enjoy getting a flavour of it.

This one is of me with the apples we scrumped!

Another good thing, somehow among all the stuff I have been doing, my more erratic than usual sleep pattern and feeling quite bad at times I have managed to read How To Be Sick by Toni Bernhard. I have really enjoyed it. It is the first book I have read on my Kindle, which I think made it easier. I might write a bit more of a review soon.

The last couple of week I have changed some medications:

I have upped my dose of Gabapentin, which I am taking for nerve pains. These are mostly occurring on my lower legs, but also affect thighs, arms and other places on occasion.

I have recently (re) developed Trigeminal Neuralgia despite being on this drug, which is listed as one which helps. I had it about four years ago, in conjunction with forehead paralysis which meant one eyebrow did not rise (!) though it felt like it was doing so… a bit odd. This time my eyebrow is thankfully mobile but the nerve pains, while not severe, are quite persistent and annoying. I cannot lie on one side of my face much which limits the already limited positions I can lie in in bed due to other pain.

I have stopped taking Eszopiclone, a sleeping tablet. I am stopping for a month on doctor’s advice to evaluate how I am without it as I have been taking it for several weeks with mixed results. I have had two stern warnings from GPs about the risks of addiction and they say it is usually only prescribed for a two-week period. Well, I have not experienced any issues with stopping it which is a relief and good to know. I think I will just take it when I am having stressful times or when I have things planned that I need to be functional for, like holidays/Christmas or visitors.

It has helped me to sleep in some ways. I was getting to sleep earlier on it, getting up for the toilet only about 2-3 times as opposed to many more previously. I was still waking in the early hours and sometimes having trouble getting back to sleep, though it was perhaps easier than it is without sleep medication which was less stressful. The real issue for me was that I did not feel much better in myself in the daytime for supposedly getting more sleep. Why pollute my body and risk addiction/withdrawal in that case? I will see how things go. It is useful to have something to fall back on if things get really difficult for short periods.

I have also started Diltiazem for my POTS symptoms. It is a calcium channel blocker, though I do not know much about it. It is listed as a drug that can make Orthostatic Intolerance worse (!) but I am only on day two and it’s too early to say either way if it will help me.

I also asked the specialist at the hospital about my increasing pain levels and painkillers, as I am taking more and more these days, though still being fairly restrained. She says to focus on paracetamol and she suggested going to a Pain Management Clinic. I don’t know what they will be able to help me with, but I am willing to give it a chance.

The most exciting thing for me today is that I have just made an appointment with an Acupuncture practitioner. I saw him when I previously had Trigeminal Neuralgia and he sorted that and made my frozen eyebrow move again as normal in just 5 sessions. It moved a tiny bit more each time!

After my disappointing appointment with the specialist earlier in the week I am looking forward to his calming, attentive and holistic approach to my health. He is very well-regarded and very skilled as well as quite a character! I really enjoyed seeing him before and hope he will have a healing and de-stressing effect on me. I primarily would like him to focus on my trigeminal neuralgia and headaches/tension in neck & shoulders as I think they are all connected. I hope he will be able to help with neuropathy and other pains too. He also used to try to help me with temperature fluctuations and I think there is plenty for him to tackle in the long run but that perhaps it may be worth taking a set of symptoms at a time as it is easier to track progress that way. I will see what he thinks.

I have had a few massages recently as the pain and tension in my head, neck and back has been getting really bad. I have avoided them due to my nerve pain for a long time – just lying on my front was impossible even in soft clothes but better now that I am taking Gabapentin. I still would not be able to have a full-body massage (do NOT touch my legs!) but my back is possible. I have tolerated the massages pretty well and they have helped, but only in a very temporary way. I hope the acupuncture will be a little more long-lasting in effect.

No, not that kind of relationship!

I am talking about getting on well, building trust, understanding what they can and can’t do for you, finding supportive doctors.

This is something I have struggled with a lot in the past, in fact the last good relationship with a GP I had was when I lived in a different city, ten years ago. I have tried since then to “invest” in a GP. I saw the same one for several years, every 6 weeks and she let me down badly when I needed her on two occasions. Since then I have just seen whoever was available to try to get a feel for who was good. As I don’t go often this has taken a while. I have now settled on someone but how to proceed?

Today I went to see my POTS specialist and she was clear that she cannot deal with my other issues (that appointments are only supposed to be five minutes long!) and that I must use my GP and CFS support team (CBT-esque stuff) more for things like nerve pain, muscular pain management, sleep… basically all non-POTS things. I thought that these things could be considered POTS-related (certainly related to Autonomic Nervous System Dysfuntion) but apparently not. I am a little disappointed as I am concerned that my pain issues have become worse recently and I want to understand why. I do not expect a miracle cure but understanding and having peace of mind that it is not necessarily neurological deterioration or some such; which really only she has the expertise to talk about as she knows about ME/CFS and POTS and the nervous system issues associated with them. But I did not get to ask that today. She says I need to go to the Pain Management Clinic instead for help managing my pain. She did say it was for pain that was not caused my wear on joints etc therefore indicating that she thinks my pain is not part of some specific cause/condition. Not that sheactually knows this based on any examinations or tests.

She says she is not a generalist and cannot deal with all those health issues I have, only deal with the treatable (POTS) bits. So it is to the GP (the generalist) I am to go, but does he have enough knowledge about my specific conditions I wonder? I did explain to her that the reason I thought she was the person to talk to was that I was told I no longer needed to see the ME/CFS specialist any more because I was seeing her and that she could deal with the ME stuff too. I am not sure she registered that. I got the feeling she was annoyed that I was bothering her with so many symptoms. I think the fact that I dared to write to her between appointments to ask some questions about a current drug and the prescription that there was a problem with annoyed her possibly too. I am sorry, but how am I to know what the protocol is?

I have been thinking for a while I should make an appointment with him (the GP) just to go over our relationship, what he can and can’t do and to allow him to get to know my situation as a whole. I think he should have suggested this but that probably would be asking too much. Whenever I go in to the doctors I often have a few things to ask about as it is not easy for me to go to appointments I don’t go unnecessarily. It is less physically difficult to go now that I have my wheelchair, as I used to get a POTS episode every time just from sitting on their awful chairs, but it does mean i cannot go alone and need my partner to take time off work, so that is another barrier. So basically there is little time for general chat in these appointments as there is no time left once the essentials are done. This does leave me with the feeling that they do not remember me between appointements, nor do they follow up on things from one meeting to the next. I get the feeling I should not expect this, but if i am not getting that kind of care from the Specialist then frankly the GP is going to have to step up! Am I asking too much to have this kind of relationship and be able to talk to a GP about my symptoms, even if there is no apparent treatment? Certainly with regard to benefits claims I would think they need to know me better as what can they really tell about my functional abilities day-to-day from my medical records if we never talk about it?

Unfortunately there seems to be some antagonism built up between the GP and the Specialist, who seem to have offended each other regarding a prescribing issue for a drug the Specialist wanted to try me on and I am now stuck in the middle with both sides telling me the other is rude or unprofessional. I cannot help but think that this recent appointment with the Specialist was coloured by this issue as she was not quite so understanding or focussed as usual. It was useful to discuss how she saw her role towards me though and she has certainly set the boundaries. I feel a bit lost as to who to now go to who I feel understands my broader issues. I hope that the GP can fill some gap and provide some support to me. I think as someone with chronic illness it is hard to have a good relationship with a GP – time is always a pressure and it often feels as if they really have no idea what life is like for me. I find I am trying to convince them of my severity in the face of looking not too bad. If I need to rely on the GP I would like him and the specialist to have a good relationship too. That seems unlikely at the moment!

I have left the appointment today feeling that if the Specialist is only interested in the bits she can try to treat, then there is no-one looking at the bigger picture – the holistic picture and this must lead to both things potentially being missed medically and to a feeling that no-one gives a damn about me, how I coping, and that I really should not bother anyone about it as nothing can be done… However I know that I have symptoms that people regularly would go to a doctor about and they would get a prescription or an investigation, but because i am chronic it is all just part of the existing illness and stop thinking about your symptoms and just accept your lot.

To me, resignation to what i am experiencing and not caring to understand it, is depression. Who is caring about that? I am supposed to go to the CFS managment team for help me cope, but unless they have dramatically changed they cannot help me. Should I invest more energy into doing the rounds yet again with lots more appointments to only come out the other side in much the same situation or just try to find some nice things to focus my energies on and hope it helps me cope? Except I have been trying to do that and my illness just gets in the way.

ME/CFS Awareness

ME/CFS Awareness


October 2010