Category Archives: mindfulness

A quieter time

I stopped taking methotrexate back in December, so I thought I’d report back on how things have been since then. First of all, I noticed the difference in my energy, mood and anxiety almost immediately after stopping. The rheumatology nurse said it would take two weeks to  completely be out of my system, but I started to feel more ‘me’ before that. It was a real relief to get some energy back, and lose some of the dark moods and anxiety that had plagued me for about four months. I hadn’t really expressed to many people the severity of the anxiety that I’d been living with whilst on the methotrexate. The fearful thoughts weren’t taking over and thanks to my mindfulness training, I was able to basically live with them without believing them, but it was hard work, constantly living with a level of mental anxiety that just is not me.

Having the energy to enjoy life – especially around Christmas – meant that I was certain coming off methotrexate was the right decision, even though I did have a few painful flares around the Christmas period. And then, amazingly, I had over a month of being free of flares, fatigue and pain. Towards the end of my time taking methotrexate, I’d been overdoing the sugar, and also cheese – two food groups that I can very easily overeat. So in the New Year, I decided to massively cut down on sugar, and to totally give up dairy. At the same time, I went days without pain, flares or fatigue.

The longer I went without a flare, the more I wondered whether cutting out cheese was a factor. After the first week or so, I thought that it could just be a co-incidence. After two weeks, I was a little hopeful, though I still conceded that it could be a coincidence. After three weeks, I marvelled that this was the longest pain-free period in at least 3 1/2 years. After a month, I wondered if I’d finally cracked it – perhaps dairy is one of my PR triggers and if I just stayed off it, I’d be ‘normal’ again?

Five weeks of no pain is enough to let the hope really slide in. The hope that you’ve maybe entered remission. The hope that perhaps you can live a normal life again. The hope that you’ve found your trigger and that if you just avoided that trigger, you’d be free of flares. That wasn’t to last. Last week I had one night of pain and stiffness that reminded me that with PR, it’s never as straightforward as you’d like it to be. Then yesterday, I had night flares and woke not being able to move the fingers in my left hand, and a sharp and persistent pain in my right wrist.

The pain wasn’t as bad as the disappointment. I managed not to give in to a spiral of thoughts saying things like “you should have known it wouldn’t be as easy as that” and “serve you right for getting hopeful”, but they were there nonetheless. So I had a bit of a cry, and reminded myself that I’d had a long period without pain and that, in and of itself was still worth celebrating. And so I got up, massaged my hands and dragged myself to yoga, which I know helps both mind and body, even though I had to spend a lot of the class in child’s pose resting and feeling sad.

Today I’m pain free again. I’m still going to stay off cheese for another month or so. Just to see. And I’ve been keeping a food diary since the new year, so perhaps that might shed some more light on things in a couple of months when it’s had time to build up some decent data.

In the meantime, the most recent flare has reminded me (once again!) that hopes about a pain free future are all very well, but living a day at a time is the only way to live with PR, because you just never know what’s around the corner. And five weeks without pain, really IS still something worth celebrating.  I won’t totally let go of the hope that one day that might extend to longer, but I’m not going to cling onto it either. I’ve lived with this for long enough to know that spending all my energy just putting hopes or fears into a future that may never  happen just stops you from really living here and now. And here and now really is all there is.



2014 – a Summary

It’s the penultimate day of 2014, which seems as good a day as any to look back over 2014.

I’ve been using the Rheumatrack App on my phone since October 2013, which means that, for the first time ever, I can look back on the year and have a realistic idea of how much PR has affected me.

The good thing about using an app like this is that you can export all the data – within a specified time frame – as a file, so it means I can get a good overview and even do a little bit of analysis.

On the app, I record my pain on a scale of 0 – 100. I also record where in the body I’m in pain and sometimes I add notes too. Most days, I enter the data in the early evening, but sometimes, if the pain changes (dramatically increases or decreases) there will be multiple entries on the same day.  I record something even if there is so flaring at all.

The year in Numbers

So, time for some geekery as I look at 2014 in numbers. There were 355 entries in total.

  • 173 records out of 355 were COMPLETELY PAIN FREE! That’s almost half!  (48%). I’m pretty sure that is higher than it would have been in previous years.
  • 89 of the records were values of 30 or less. That means that for a quarter of the time, I am not in much pain at all.

Adding them both up, this means, that ¾ of the time, I’ve been in no or neglible pain. I’d say that was a pretty good result.

  • I had NO flare ups where the pain was higher than 85 (it’s at about 80 and above that I am crying in pain and can’t really function well at all) and only 24 days where the pain was higher than 65/100. this is only 6% of the time.
  • Which leaves 21% of the time – (1/5th) I was in some sort of uncomfortable pain, but could still function.

I had the longest run of pain in the early part of the year while there was a lot of stress going on in the house due to building work: 42 entries over February 14th til the 25th March. I had a long run again in the summer – 27 entries 19th July – 14th August. I wasn’t particularly stressed and can’t pinpoint anything to that particular run.

I had quite a few nice spells with no pain at all, with the longest being 17 completely pain free days in a row in May (4th til 22nd). This was also during and straight after my detox retreat in Spain. This may or may not be a coincidence.

Where do you flare?

Most of the flares in the early part of the year were persistent in my elbow and shoulder. Most common areas for flares continue to be somewhere on the hand – wrist, base of the thumb, or any of the finger joints. My toes are rarely afflicted, but they have flared once or twice. I had a jaw flare twice. My knees have been troubling me off and on, but it seems that this may be down to tendonitis. I’m waiting for a physio appointment to assess this further

What I have not recorded in the app much is my fatigue or energy levels. I have three days of note where I was completely incapacited with fatigue.

Diet stuff

Overall, I do feel healthier at the moment, despite flaring from time to time. My energy seems more manageable, my mood more stable and my ability to cope with my PR much higher than it has ever been. I’ve been gluten-free since April and have been sticking to a fairly ‘clean’ alkaline type diet about 80% of the time. I notice that when I eat more sugary things, my mood and energy levels are both affected. I’m pretty committed to this new way of eating – which is just a stricter and healthier version of the mostly vegetarian diet I had already been following. But now, I eat less dairy, no gluten, and cook a lot more from scratch than ever before.

What about exercise?

I have done very very well when it comes to exercise this past year. I have definitely found that a daily morning yoga practice with my energy levels, as well as alleviating the morning muscular aches and pains I have, possibly from the fibromyalgia. I did an amazing fitness bootcamp in March and completely surprised myself with what my body could handle. And I have continued to fit in various exercise classes into my working week. In May, I got a new job working for Manchester Mind, and I enjoy it a lot. What’s also great is that I am able to fit in my lifestyle around it – continuing with my twice weekly zumba classes and working my hours over 3 days instead of 2 1/2. As part of the job, I had to visit a lot of people around Manchester and so over the summer, cycled about 70 miles a month JUST FOR WORK!  I also did a 26- mile sponsored cycle ride and raised over £400 for Refugee Action.

Since I decided to prioritise my yoga practice first thing, my meditation practice has taken a bit of a back seat. There isn’t enough time to fit in both yoga and meditation every day in the morning, so in the days when I’ve not been able to do both, I tend to meditate right before sleeping.

Looking after my Mind is important too

During 2014, I also learned to lead others in meditation on the Breathworks course learning to teach Mindfulness for Health. I felt hugely self-conscious the first time I led a meditation. Previously I’d just read it off a script or played something on the Ipad when I’d led meditations before. I still feel a little self-conscious, but I’m getting more confident simultaneously meditating and leading. I also got such great feedback on the last course I ran (I run 6-week long stress management and emotional wellbeing courses for people with diabetes and heart disease) that my confidence has really been boosted in that area. My meditation practice has really been life changing and it really does help me cope when things are tough.

Looking ahead

I’ve got a bunch of goals and hopes for 2015, but my main one is to continue with everything I’ve been doing that helps my health – so that means sticking with the alkaline diet, keeping exercising and doing yoga as well as meditating too. I have two yoga retreats booked – a weekend one in March, and a week-long retreat in Morocco in May, which I’m very much looking forward to.

Of course, one of my hopes is that there will be many pain-free days ahead, and fewer ones full of pain, but at the end of the day, that is something that I’m not completely in control of. I really hope that sticking with my healthy lifestyle over a long period of time might mean fewer and fewer flares. I can live in hope. But I also know that my healthy lifestyle helps me cope better with pain and fatigue so even if it doesn’t ‘cure’ me, it certainly helps me live better and be happier.

Happy 2015! Thank you for reading.


Positive news

I can’t believe how long it’s been since I’ve written a blog post. In fact, my plan to blog regularly around once a month does seem to have fallen by the wayside a little. Mainly, this is for good (and by good, I mean positive) reasons:

Firstly, I’ve had quite a busy time of it with work and with completing a course, “preparing to teach in the lifelong learning sector” which has kept me pretty busy. The course I was running for people with long-term health conditions has produced its own booklet, and I spent lots of time and energy getting it ready for it to be printed. It was great fun to do – it’s been a while since I’ve done some design and layout and I’d missed it. If you’d like to see what we’ve produced, there’s a link to a page where you can download the PDF version here. The booklet includes lots of the collective wisdom of our group including tips on dealing with energy and fatigue, learning how to say no and, for people in Manchester, a list of resources. You can view it online or download a copy.

Secondly, although I have flared up (and down again), the arthritis seems to have settled into a bit of a rhythm. Albeit it a Palindromic Rheumatism random rhythm (of course)! This means, I’ve had some wonderful completely pain-free and normal energy days (and even weeks!), interspersed with mild and not-so-mild flare ups and fatigue. However, nothing has been completely unbearable. The hardest thing about this type of pattern is that every time I have a prolonged period of no symptoms, I get lulled into the idea that I might be ‘cured’. This means that I have to go through yet another period of acceptance about still having PR when my symptoms rare their ugly head again.

Since my post on Remembering to Be Mindful, I have managed to meditate every day! Yes, Every Day! I’m immensely proud of this. I’ve definitely noticed the benefits of integrating it into my daily routine and it has had a noticeable impact on my ability to cope with life –not just my PR. I’ve also been keeping a regular ‘grateful’ diary which helps me focus on different positive things every day.  Even when my mind insists on being busy during the meditation, I still find some peace in taking the time to just sit and be.

So, on that positive note, I’ll sign off now, and hopefully be back again sometime in the not too distant future.

Remembering to be mindful

The tendinitis that I’ve been suffering since the New Year had really set me back emotionally and physically. As well as being in pain pretty much constantly, it was also affecting the quality of my sleep. This meant that I spent daytimes feeling really low on energy and consequently low emotionally as well. Last week, I was away with my partner and noticed that a great deal of my conversation with him was dominated by me simply saying “I’m really tired”, and also “I’m so fed up of feeling tired all the time”. He reminded me that I had not meditated regularly for quite a while and that this probably meant that I was coping less well than usual.

When I thought about things, I realised that I am mostly pretty good at dealing with sporadic pain and the unpredictable aspect of my pain and fatigue. I rarely spend too much mental energy worrying about where it’s going to turn up next, or how long flares will last for. I never spend any time worrying that I’ll get worse. This is a big change from how I was when I was first diagnosed with palindromic rheumatism.

Yet the pretty much constant pain of the tendinitis and fatigue was somehow harder to deal with. It had started to grind me down physically, and that was feeding into how I was feeling and thinking. So, I decided to kickstart my mindfulness and meditation practice by reading a book that had been on my shelf for a while: Mindfulness, A Practical Guide to Finding Peace in a Frantic World by Mark Williams and Danny Penman. I also decided to try and follow the program in the book.

My first introduction to mindfulness and mindfulness based cognitive therapy was on a wonderful course for people living with a long-term condition led by Breathworks.  It really helped me accept the realities of my condition, and gave me some really useful tools for coping, not just with my arthritis but with life in general. So my own experience of mindfulness has already been a positive one. However, my meditation practice – the foundation of mindfulness – has been somewhat sporadic. Sometimes I meditate daily, sometimes even twice a day. Other times I can go days or even weeks without prioritising meditation. Even though I’m getting practised at mindfulness itself, it’s not enough on its own if you don’t meditate.

So I read the first few chapters of the book to try and inspire me to prioritise my meditation again. One of the premises of MBCT (mindfulness based cognitive therapy) is that not only can our thoughts drive our emotions, but it can work the other way as well. In my case, my low energy and tiredness was feeding into my thoughts and instead of just accepting those feelings, my mind fed off these negative and low emotions, exacerbating things and making me feel even lower.  My mind was stuck, focusing only on the pain and tiredness and not on anything else that was going on externally or internally. It was like a broken record.

Most key for me to remember, was that my mind was becoming really focused on wishing things were different. My internal narrative was basically on a loop constantly saying “I wish I had more energy”, I wish I wasn’t so tired”. It wasn’t even the pain that was the main issue. It was the fatigue and tiredness. Instead of accepting the pain and fatigue for what they were, my mind was occupied with wishing it was different. In the book, it says that focusing on the gap between “how you feel and how you want to feel” highlights that gap, and this doesn’t help things, it only makes it worse. The trouble was, just wishing my pain and tiredness away wasn’t going make them go away. And it wasn’t as if I wasn’t doing things to help myself. I was. The only thing I wasn’t doing was accepting or meditating.

Once I realised how much energy I had been spending on wishing I had more energy, and wishing it was different, the clouds lifted. Since I’ve stopped wishing things were different and accepting them as they were I actually started to feel better. I’m still tired, but I’m saving energy by not focusing on wishing I had more energy – if that makes any sense!  I’ve managed to meditate almost daily since starting the program.

The funny thing is, I know I feel better after a yoga nidra meditation – a deep relaxing meditation. And I know that regular meditation does help. And it’s not just me that thinks that. Research studies all over the world are showing how beneficial mindfulness meditation can be. Yet, I don’t always do the things that are good for me or that will help me feel better. Thanks to mindfulness, I’m not going to beat myself up over it or spend too much time on dwelling on why this is. After all, I’m human, and I’m not the only one who forgets to do the things that are good for her!  I’m just going to keep on keeping on with my practice, and to really try and meditate as often as I can (which means timetabling it in and prioritising it).

I’m also going to remember that the key to this recent shift is that spending time on wishing things are different to how they are, especially when it’s about something that you cannot change, is a waste of mental and physical energy.

thankfully, I can also report that the tendonitis is healing – slowly.  The pain is much less, and I am sleeping better.

Some meditation resources that I’ve found useful include:

  • Headspace offers a great introduction to mindfulness meditation in its free “Take 10” programme which includes ten, ten minute meditations. I paid for the full year’s programme on an app and have progressed through quite a few of the daily programmes and found them really excellent.
  • Meditation apps from Oasis: There are a few different free and paid-for apps.
  • Insight Timer app: Basically just a meditation timer for people who don’t need much leading with their meditations.
  • Breathworks: Offers CDs, books and courses (online and throughout the country) on mindfulness. Especially relevant for people with chronic illness.
  • Everyday Mindfulness: Blog and forum for people using mindfuless