Mindfulness

I said a while back I was going to do something on mindfulness, and it’s taken this long because I hit a few hold-ups along the way. First computer issues, then health issues, and then there’s just so much stuff out there about mindfulness, and some of it is. . . not contradictory exactly, but it seems to have become a bit like yoga: some of it has become ‘popularised’, and then there are a lot of different methods. This being the case, I fell back on a few go-to sites.

The NHS has a page on mindfulness (here) which gives a basic description as well as links to find out more. It describes mindfulness as “knowing directly what is going on inside and outside ourselves, moment by moment.” In other words it means being aware of yourself and the world around you, and taking time to notice both. The idea is that mindfulness encourages an appreciation and enjoyment the world. It can also help with stress and depression both through the fostered connection between person and environment, and by helping people to notice the signs of stress or depression and deal with them.

In addition to the general introduction – which is one of the clearest and most reasonable I’ve seen for mindfulness – I really liked that toward the end there was this comment:

“Mindfulness isn’t the answer to everything, and it’s important that our enthusiasm doesn’t run ahead of the evidence,”

My next visit was to Wikipedia, which had the same basic definition: mindfulness is a process by which people focus their awareness on internal and external experiences taking place in the present moment. It had a lot more on the psychological aspects, its origins and links to Buddhism, and how it can be used in different settings. It added that clinical studies have come up with results suggesting there are both physical and mental health benefits to practising mindfulness, and it be of benefit to healthy people as well as those with various medical conditions.

The final site I visited was Be Mindful, which had something of the same definition but presented in a way that instantly put me off. (Don’t ask me why because I don’t know, but a lot of the mindfulness stuff just makes me want to cringe/laugh, then run away while wishing desperately never to hear anyone talk about it ever again) Be Mindful advocates the use of mindfulness techniques as tools to manage your wellbeing and mental health. This includes its use to alleviate stress, anxiety, and depression by helping people manage difficult experiences and situations. There is information on evidence and research, finding a teacher, learning online, and FAQ’s. They also do an online stress test.

The two most common link-ins with mindfulness are meditation and yoga, I guess because both of these skills promote taking a bit of time out of a hectic day to slow down and breathe. And there’s the whole self-awareness and breathing techniques aspect.

I’m not going to go into any of this any further right now because a) I don’t want to bore anyone not interested even if those people stopped reading after the title, b) I’m sure most people reading this blog are more than capable of typing in a search term and finding these things for themselves, and c) I don’t see much point in merely repeating information that’s already out there.

As always, let me know if I’m wrong!

ME/CFS Clinic – I got there!

Yesterday was my appointment at the ME/CFS Clinic. The news is. . .

  1. I really do have ME/CFS. I have been diagnosed twice, so there’s no arguing with it.
  2. There’s no miracle treatment but they think there are things I could try that might help.
  3. I have to wait for a phone call to make an appointment to go back.
  4. I am to start thinking about my future

So I have fallen from one wait to another, and likely there will be another wait after that, and another after that. . .!

Immediate advice I was given was to try using something called ‘First Defence’, which is a thing meant to help prevent you getting colds, and the other thing was to get zinc lozenges, which does the same thing. Anyone heard of those, or tried them?

I’m also to start thinking about what I want to do with my life (I think I might be slightly insulted) which feels like the ‘what do you want to be when you grow up’ question all over again. Being a bit before themselves aren’t they? I mean, there’s positive thinking and then there’s arrogance: just because I’ve been dealing with this without medical supervision doesn’t mean as soon as they get involved I’m going to improve. Maybe I will, but I’m not going to go sky-high with plans just yet.

Think I should tell them something outrageous just to see what they say?!

The other things that I have to go back to learn are ‘tools to help me manage my condition’. From my previous phone call I would guess it’s going to be Graded Exercise Therapy and mindfulness.

  • Graded Exercise Therapy (GET) is when you gradually increases the amount of exercise you can do over a period time. The NHS supports the use of GET as a treatment for ME/CFS. The ME Association does not.
  • Mindfulness is a technique used to reduce stress, anxiety and depression by increasing awareness and ‘living in the moment’.

I’ll probably do a post on of these in the near future – there seems to be a bit of controversy over both methods and it’ll be research for what I might be in for!

I guess this first consultation was mostly just to confirm I have ME/CFS, because I wasn’t really asked anything much about how I cope or the emotional side of things. Which makes sense. The consultant/doctor diagnoses then the occupational therapist takes it from there. I’ll probably have to do another round of questions when I go again. . .

That’s where I’m at at the moment then. Which is pretty much where I was before as far as I can see, except I have appointments and talking and whatnot to (ahem) look forward to. Oh, and when my Gran found out I’d been to see someone she asked, “did they say when you’d be over it?”

By the way, if you haven’t been inundated with the mindfulness craze please let me know. I want to know where you’ve been living so I can go there – it will reduce my stress levels! (No insult intended to those who practice mindfulness, I understand it is a legitimate technique that has had a positive influence on many people.)

Pacing

This won’t necessarily fit in with the official version of what pacing is, but it’s how I’ve come to see and understand the idea/technique.

Quick-Notes:

  1. Pacing is a technique that helps people manage their ME/CFS
  2. It’s about finding balance, and doing what you can when you can
  3. Most of the work has to be done by the sufferer, although there are ways other people can help, and there are professionals who can offer advice and assistance
  4. It’s an ongoing process to manage the condition, not a quick fix, not a cure

How to describe pacing? Pacing is (in theory) like becoming an adult: you have to accept things are different than before and that you’re not finished learning, become responsible for your own actions and decisions, be aware of yourself and what you’re doing, understand that actions have consequences, and on occasion be prepared to bargain & compromise. It’s also alike in that while guidelines and advice can be given, it’s up to the individual to work out how best to apply the concept to their own life.

Acceptance. This is sort of the first step, because if you don’t accept you have this condition – that you can’t carry on like you used to and that there will be unexpected ups and downs – then you’re not going to be able to get on with adapting and learning how to manage it. Unfortunately that’s where the advice ends: you have to work out how to come to terms with having ME/CFS for yourself.

Learning. As with any condition, there are many new things you’re going to have to learn. There are general practicalities: what the condition is, how it affects you, what potential treatments are, what your triggers, warning signs and limits are, how to deal with physical symptoms and what lifestyle changes these may necessitate. There are more personal considerations: how your character will help/hinder you, dealing with related emotional issues, telling family and friends and coping with their reactions, ditto for strangers. It doesn’t end there either, because if you have the condition for a long time your symptoms may alter, either in severity or type.

Responsibility. Although there will be people offering advice and support, you have to take responsibility for finding out what works for you, because there’s no checklist or or set of rules for ME/CFS. What works for one person may not work for another. It’s up to you to try things or not, to find out information, to implement suggestions, to keep going. It’s also only right (and means you’re a nice person) if you accept responsibility in another way – don’t blame other people when you suffer a set-back. If you went in to work, went out with friends, stayed up a bit later, that was your decision. Because everyone knows. . .

Actions have consequences.

Bargain & compromise. This can be a dicey business, but if you have a line-up of things you really want to do, you may decide (or may have to) implement these options. For example, you have a part-time job Monday, Tuesday, Friday. It’s your friend’s birthday and they want you to come out at the weekend. You always go out with your mum on Thursday. You know you’ve already been overdoing it a bit recently and there’s that bug going round the office. What do you do? Ignore your warning signs and do it all? You end up near-enough housebound for two weeks at least. Your other options? A) choose one or two activities which are the most important and excuse yourself from the rest. B) take it one day at a time, doing whatever is planned but taking it as easy as possible and being ready to call a halt if you get worse. C) decide you’ll do x even though you know you’ll probably suffer for it, leave y early, and rearrange z for another time.

Awareness. You have to become aware of how you’re feeling because no-one else can do that for you. Only you can know if you’re feeling run-down, and you have to be strong enough to follow through on that knowledge – if you think you’ve had enough say so, do something about it, stick to your decision. (Unless you really start feeling better or decide it’s worth the risk)

Honesty is also an important element of pacing. You need to be honest with yourself and others about how you’re feeling: don’t pretend nothing’s wrong if it is, because you’ll suffer in the end; but when you can do things – even little things – then do so because it will probably make you and the people around you feel better, more positive.

Google’s definition of ‘pace’ is to: walk at a steady speed, especially without a particular destination and as an expression of anxiety or annoyance. Well what you want with ME/CFS is to keep on at a steady maintainable speed, and setting goals might not be the best idea to achieve that. (Although that also depends on your personality and what the goals are I guess) The anxiety and annoyance you get for free, and will make themselves known without any say-so from you!

In the end pacing is about balance – you can’t do everything you used to, but if you take care you can shave off the major lows you have probably been suffering and establish a new ‘normal’. For the technique to be most effective it should become a way of life, almost instinctive. You sense your warning signs and heed them, and you don’t deliberately do more than you know you can handle unless you’re willing to accept the consequences. . . In other words, you do what you can when you can.

Questions for a Doctor

In the interests of rediscovering all I can about ME/CFS, I made an appointment to see my GP. Although there’s tons of information online, I wanted to get a medical professional’s take on my personal syndrome and how I’ve been coping, current treatments, alternative therapies, and the possibility of starting a family. In ten minutes. It’s possible right?

Here’s something you might not know: just because doctors believe/accept this condition, it doesn’t mean they’re any more sympathetic or know more about it than you do. But I’ll let you decide for yourself.

Highlights of the consultation:

  • I was informed that attitudes towards ME/CFS have progressed since I was diagnosed, and there are therapies to help.
  • I was told I’m lucky not to suffer extreme pain.
  • I was referred to a clinic that specialises in ME/CFS, which means a new round of blood tests to be done first. (The two separate appointments will have their own waiting times of course, ones for the clinic looked to be over a month, so nothing unusual there!)

Bad/worrying points:

  • There was no record of my diagnosis in the system, no mention in my notes of me having ME/CFS. When the GP realised how long it had been since I’d seen a medical professional she was shocked and looked at me like I was crazy. Explaining I was told there was no need for me to see someone unless something changed significantly for the worse (and her admitting they probably couldn’t have done anything anyway) didn’t seem to help.
  • I had it pointed out (several times) that I’ve changed a lot since I was twelve.
  • I was never asked how severe my symptoms were or which ones I had specifically.
  • The advice she gave was to pace myself. Good advice if I hadn’t received it when I was diagnosed and acted on it then.
  • When she heard I lived at home with my parents and had no job she looked more shocked than before and recommended I get a part time job. It would be easy because I have a degree.
  • When I mentioned I’d put off starting a family because I thought it would be too much for me and make my condition worse, she (again) looked at me like I was crazy. There’s no need for that, she said, that’s what a partner’s for, and finding one of those is what a job’s for. (?????)

The result? I have a referral, learnt that ‘acceptance’ doesn’t necessarily make things better, that I was incredibly lucky when I first went to see doctors about my illness, and I’ve had the value of the understanding, curious, ordinary people I’ve met during my life reinforced.

Today there were questions I didn’t ask because I felt my GP hadn’t troubled to understand my condition and my situation, instead making assumptions and judgements. Maybe she’s right and these blood tests will show I have some other condition that can be treated with a pill or an injection or whatever – it has been many years with many changes since I was twelve after all. Maybe I should do what she says: get a job and start living my life because I’m so young and missing out on so much by isolating myself. . .

Uh, wait a minute. What was that about the progression of attitudes toward ME/CFS?

Web-View: ME Association

The ME Association website was the second stop on my research trail after checking out the NHS offering, and there’s a whole lot going on here. Below are the items on the top menu:

  • Home – gives a few sentences about each section of the site
  • About ME – what is ME/CFS, symptoms and diagnosis, causes, explaining ME/CFS to other people, treatment of ME/CFS.
  • About the MEA – what they do, who’s involved, how to get involved
  • Support – how to contact their helpline, search for your local support group, and information on councelling services
  • Research – current, published, volunteering for, and how the MEA supports reseach (and chooses to which to support)
  • Helpful Services – adverts for products and services that may interest ME/CFS sufferers
  • Contact us
  • How you can help – how to make donations, fundraising events, sponsored activities, fundraising support, ideas, and more
  • MEA shop – books, leaflets, merchandise and gifts, join the MEA

Down the right-hand side are additional links to join the MEA, visit the shop, see the latest news, contact and donation information, quick links to the latest posts, and a searchable archive.

I thought this whole site gave an impression of competence, understanding, and support, which is what they say they’re about.

ME Association: “Informing and supporting those affected by ME/CFS.”

The information is presented clearly in organised, easy-to-assimilate chunks with more details available if you’re willing to pay a small amount to get one of the many leaflets on offer.

The leaflets themselves come in two formats: you can buy online, paying slightly less to get a downloadable version, or send off an order to get a physical leaflet posted out to you (costing a few pence more). The leaflets are approximately four sides of A4, and are available on a variety of topics from general information to medical management to benefits and social care.

I actually first visited this site several years ago but didn’t look at it in detail for two reasons. One, since I was using the computer I know I must have been feeling reasonable and two, when I’m feeling better I try not to think about anything to do with ME/CFS. Sort of like pretending it’s not there. Until it is. I wish I had taken a closer look because there is so much good information here. As well as getting a few of their leaflets to look through, I found my local ME/CFS support group, I’m still reading through some of the information on the website, and I plan to check back now and again to see what research is going on.

Definitel