Tag Archives: Palindromic Rheumatism

10 things you may not know about living with arthritis

It’s National Arthritis Week from 12th – 18th October and I’ve been asked by Arthritis Research UK  to ‘donate’ a blog post to raise awareness about the week. One of the suggestions was to do a Q&A – 10 things you might not know. The thing about arthritis is it isn’t really a universal condition, and affects us all differently, even though there will be things that we share (pain mainly!), so I thought the Q&A was a really good way to highlight this and how it impacts on my own life.

The condition I live with is called: Palindromic Rheumatism. Most people have never heard of it. Some medical professionals haven’t even heard of it. Palindromic means a word that is the same when you read it backwards and forwards. In the case of this type of arthritis, it means that the joint flares come and go. They can be in one joint at a time or many. They can be there for hours, days or even weeks. They can flit from joint to joint with no warning, and sometimes I can wake up with a pain in one joint, and go to bed with a pain in a completely different joint. There is no rhyme or reason to my particular PR. I can’t predict when I’ll flare or when the flare will go.

I was diagnosed aged: 34

How my arthritis most affects my day to day life: Because PR causes pain and fatigue, I have to be careful that when I don’t have any pain or fatigue that I don’t overdo it. Its unpredictability means that I sometimes have to cancel things at the last minute. It’s hard to plan when I don’t know how I’m going to feel. I can have loads of energy and do lots of physical things and brain taxing things. I can also have days when I can’t get out of bed and even formulating a sentence is too taxing on my brain. The one predictable thing about my PR is that it is not predictable. Even when I am not flaring or fatigued, I don’t forget that I have PR because I have to plan and manage my energy carefully. I also have quite a strict regime to help me live better with PR. I eat healthily (no meat, minimum dairy, no gluten at all, not much refined sugar), exercise often (most days of the week I will do SOMETHING), and meditate most days. I probably spend a lot of energy and time looking after my mental and physical health. I was already prone to depression before developing PR. Since developing PR, I am even more likely to sink into depression so the exercise and meditation is as important in keeping me mentally healthy, as physically healthy.

A new hobby / interest I’ve taken up since my diagnosis: The most significant thing I’ve learned or taken up since my diagnosis is learning about mindfulness and meditation. It has helped my mental and physical health enormously, and I use it in my work (teaching it to others), as well as in my daily life. I may not have decided to attend a course about meditation if I had not been trying to learn ways of managing my pain.

What living with arthritis has taught me: Living with arthritis has taught me many things. One of the lessons I’ve learned is to be grateful for the things that I have, and the parts of me that work, and not to spend too much energy on the things I don’t have and the parts of me that don’t work. I’ve also learned to live more in the present, than to spend too much time worrying about the future.

My advice for other people living with arthritis: Arthritis is one word to describe lots of different illnesses and everyone’s experience of it will be different. So my advice would be to spend time finding YOUR best way of living with it, rather than to think there is a ‘one size fits all’ way of staying healthy. Don’t give up trying new things – even if you’ve had it for years – and instead of fighting your arthritis (you probably aren’t going to beat it!), learn to accept and live with it. This isn’t the same as giving up. It’s simply recognising what your limitations are at the time, and making the best of it.

My biggest challenge/triumph has been: I was always so frightened of pain when I was younger. So my biggest challenge has been to learn to live with pain. There are lots of triumphs over the years, but my most recent biggest challenge has been to do a ‘crow’ pose in yoga. I can’t do it every time, and mostly I can only stay there for a few seconds, but this is a huge triumph for me, given that my wrists have been very weak due to the PR and flare a lot. Interestingly, they have flared less often since my yoga practice has intensified.

What gets me through a tough day: Some days are just tough! Recognising that some days are tougher than others and sometimes you just have to be EVEN KINDER to yourself and do whatever it takes to make that day bearable – even if that’s going to bed and crying!

How my friends and family help me: My friends and family help me  ENORMOUSLY by trying to understand, by offering to help when I need it, but not smothering me with help when I don’t.

This National Arthritis Week I’d like to say thank you to: everyone who’s been with me on this journey! That’s too long a list to type up now, but it includes all my friends, my family, my consultant, and my employer! Also, my yoga, zumba and pilates teachers for keeping my mind and body as healthy as they can be.

Advertisements

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.

 

National Arthritis Week

It’s National Arthritis Week.

Who do you imagine when you think about someone with arthritis?  I think the stereotype of aged grandmother, white hair and deformed fingers still persists when it comes to this disease. Yet, when I think of all the people I know with one kind of arthritis or another, none of them fit this stereotype.

There’s my great gig- going friend. He’s 50 now, but he has had Psoriatic Arthritis for as long as I’ve known him – which is around 9 years now. He loves music festivals and spends his summers going from festival to festival, stewarding, or litter picking, sleeping in his van. We’ve been going to gigs together now for nearly a decade and when it comes to a ven diagram of our music taste, there is probably a bigger crossover with him than with anyone else I know.  He takes methotrexate, which seems to suit him as he says he has few side effects and it seems to keep his arthritis under control. We rarely talk about the fact that both have some kind of arthritis.

There’s my wonderful campaigner friend down south. She’s about the same age as me and has had her rheumatoid arthritis since she was in her teens I think. She’s active in a range of campaigns, from Reclaim the Night to anti-arms and anti war campaigns, while also working part-time for a charity. I met her through social media and was attracted to her spirited and funny tweets, before meeting her in person and discovering we had many mutual friends.

There’s my best friend, recently diagnosed with osteoarthritis in one (or maybe more?) of her joints. She’s a mum to young twins and works part-time. We met through singing and have spent many an hour chewing the fat, and talking about our lives.  She’s warm and caring and will always listen to me when I need to complain about my lot.

There are other people in my extended social circle – people I don’t know that well personally, but who are friends of friends. The mother at Zumba, who no longer comes, who was diagnosed with an unknown type of inflammatory arthritis, possibly reactive arthritis. She was always at the front of the class, dancing as if no one was watching her. The last time I saw her she told me she was still getting occasional flares but trying her best to keep up with her yoga practice which she felt was really helping her.

There’s editor and writer, who I recently discovered also has palindromic rheumatism. She keeps hers under control with diet, yoga and meditation.

There’s the 40 year old friend of a friend, whose recent flares sound remarkably similar to the onset of my PR and who has yet to have a firm diagnosis. She’s finding it all quite weird and frightening and can’t quite get her head round the fact that she can be in absolute agony for 36 hours as if she’s severely injured herself, and then it can disappear completely as if it had never been there. 9 years after the onset of my PR, I tell her that I can barely get my head round that too!

Then there’s all the different people on the social media sites that also have some kind of arthritis. They range in age, personality type, country of origin and attitude towards their illness. Some are determined to ‘fight’ this disease and carry on as if it did not exist at all. Some are determined to find a dietary route to keep it under control. Some prefer to control it using prescription drugs of one kind or another. Others are determined not to let any chemicals enter their body.

And then there’s me. 43 year old writer of blogs (and other things). I’ve now had PR so long that it has become a part of my identity – for better or for worse. I’ve given up fighting it and accept that it will do what it will do. Mostly, it doesn’t do too much damage. I don’t get as angry at it any more, though it can still frustrate me. I don’t think I control it in any way, but I live with it as best I can, eating as healthily as I can, meditating daily (still!) and trying to balance my life and my energies.

Arthritis deserves a new image. One that acknowledges the fact that it is actually a broad umbrella term for a range of different joint conditions and one that acknowledges that the people who are afflicted with it may only have two things in common: the fact that they are human beings, and the fact that they have a diagnosis of arthritis. You can’t always tell by looking, that’s for sure.

In my opinion there still needs to be more education, MUCH more research and, given the most recent comments on my blog about unsympathetic medical professionals, much more compassion towards people with arthritis. We live amongst you!

Links:

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

Moving around

One of the weirdest thing about PR is that it can hit any part of the body, at any time. When I tell people that I suffer from arthritis flare ups, they tend to assume that it’s in the fingers.  While it might hit my hands, fingers, or wrists more than other joints in my body, it certainly doesn’t confine itself to there.

This weekend I’m having something of a neck flare up. The last time it flared there was last December, so it’s certainly not that common for me to have, but it’s pretty unpleasant. It hurts to move my neck in any direction, and so sleeping is particularly difficult because it’s agony in my neck every time I shift position in my sleep.  It isn’t hurting too much just so long as I don’t try and move my head position but then when I do, it’s incredibly painful. As with all my other flare ups, taking painkillers is pointless because they don’t work for my PR pain.

Continue reading

Daunted by new drug regime

I saw my consultant two weeks ago and he decided to follow the pain management clinic’s advice, which is to recommend that I try taking a drug called Gabapentin instead of moving onto Methotrexate. Gabapentin is not a ‘disease modifier’ drug, but one which is supposed to specifically target the pain and flare ups (rather than the causes of them). Right after seeing the consultant, I came down with a virus so I wanted to wait til I was completely over it before starting on a new drug regime.

So, today is day 1 of taking Gabapentin. As always, when I am taking new drugs, I’m pretty nervous about the potential side effects. As ever, I’ve made the mistake of reading the list on the leaflet. Feeling drowsy and tired are the most common – as if I need drugs to make me feel any more tired! Other side effects include anger towards others, confusion, mood changes, depression, anxiety, nervousness and difficulty with thinking.  Hmmmm. Not particularly appealing given my history of depression. Joint pains are another ‘common’ side effect to look for!

What if I’m one of the unlucky few who get these side effects? Does that’ll mean I have those symptoms TWICE as much as before?!

I have to gradually build up the dose of this drug, so I think it’ll take about a week to know if I’m getting any side effects, perhaps a little longer. I’ve have had a few flare ups in the last couple of weeks, so I guess if I’m pain free for a while, then it might be working – but we still have the usual “is it working or is it just a mild period” question.  I am also enlisting the help of my boyfriend so that he can judge whether I’m any more dopey and fatigued than usual!

On another tack, I discovered that the NHS is now no longer approving prescriptions of three months at a time. Which means that I have to get a new prescription for my hydroxychloraquine every two months instead of three (and this drug too, if it works). Which therefore means that having Palindromic Rheumatism just got more expensive.