Category Archives: Exercise & arthritis

Trying something new

After 12 years of living with palindromic rheumatism and experimenting with various lifestyle and dietary changes I’ve made the decision to start taking new medication in addition to the hydroxychloraquine that I already take.

Doing yoga and avoiding gluten and eating healthily has served me pretty well. But it has not cured me. I am still flaring. I am still fatigued. And I am still none the wiser as to what triggers a flare, or what will make it go away once it’s there.

I’ve resisted taking methotrexate for a long time. The side effects looked too scary, and I kept reasoning that as I was generally coping with my arthritis, there was little point in putting these scary drugs into my body.

But sometime over the last twelve months, my perspective has shifted a little. I experienced a three month wrist flare in the winter which led to a lot of stress and worry that permanent damage was likely. I’ve had scans and x-rays and luckily, that’s not the case. But even so, living with that constant flare for three months really did interfere with my quality of life and ability to do some of the simplest tasks. My yoga practise suffered too.

On top of that, the unpredictability of flares, and an extremely severe shoulder flare a couple of months ago made me think “You know what – you don’t have to live like this” and decide that it was time to try something new. I felt like a failure at first and had to work through a few feelings around that, and the fear that comes with starting something new and potentially as damaging to my health as the arthritis itself. But I reasoned – if there’s a problem, I come off it. If the side effects are horrible, I come off it. If there’s no change. I come off it. I’ll be no worse off than I am now.

As well as the fear, there’s positive emotions as well. The fact that methotrexate DOES work for a lot of people gives me some hope. I know people taking it with no side effects at all. And the idea of being pain and flare free, even if it only works for twelve months, is extremely appealing.

I started my first dose on Sunday, and will be taking folic acid four days later. I will be closely monitored at first (blood tests every two weeks) and will be careful to stay away from people with horrible infectious diseases as I will be more likely to catch infections and illnesses as a result of the drug.

I’ve been told that it will take around three months to know if it’s working, so for now, it’s a waiting game. I wait to see if there’ll be side effects and I wait to see if it’s going to work. In the meantime, I continue with the lifestyle changes that I know help me, even if they don’t cure me.

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.

 

Body confidence

Like most women, I’ve had a pretty love/hate relationship with my body for as long as I can remember. Teenage years were full of mild amounts of self-hatred towards my breasts and belly, and general apathy towards physical exercise due to being rubbish at pretty much all sports.

While not a classic yo yo dieter – I’ve never got particularly fat, nor particularly thin – my weight has fluctuated over the years, as has my body confidence. Despite having read classic feminist texts around body image (“Fat is a Feminist Issue” and Naomi Wolf’s “Beauty Myth”) it’s really hard to completely and utterly fully shake off pervasive societal influences.

I only started to exercise properly when I was 30, and when I did, I developed a new attitude to my body. One which was around seeing my strength and stamina improve, and reaping the rewards of being properly fit when I trekked for three weeks in the mountains of Nepal – one of the greatest achievements of my life so far.

When the arthritis struck ten years ago, a whole bunch of different emotions towards my body emerged. There were negative emotions about my body letting me down, causing me pain and preventing me from fully functioning in the world. Despite years of mindfulness and meditation practice, it’s hard, even now, when a flare rears up to not feel disappointed in my body. When fatigue forces me to cancel something I wanted to do, it takes a conscious effort not to feel angry and upset with my body for letting me down.

This is why continuing to exercise has been crucial to my body and my self-image, as it’s enabled me to focus on what I could still do, rather than what I can’t. And yet… and yet, I’ve often wondered – what could my body still really do, how hard can I push it before the arthritis rebels? I haven’t done a physical challenge for a while (apart from living with arthritis, which is challenge enough), so when the opportunity came to review the Apples & Pears fitness bootcamp for Queen of Retreats, I jumped at the chance.

Lots of people pointed out that I didn’t need to lose weight, but that wasn’t the point for me. I wanted to see what I could do in a week. What I could put my body through and what I was still capable of. I was clear to myself from the outset – if I was too fatigued, or my joints were hurting too much, I’d rest, or not do the activity or exercise. The trainers were understanding and supportive, and reiterated to everyone the importance of listening to your body, and respecting its limits.

I arrived at the bootcamp, both nervous and excited. I am generally pretty fit at the moment. Despite the arthritis (or maybe because of it), I exercise most days – cycle on my bike, go to zumba classes, plus some pilates or yoga too. But would I be able to cope with six full days of exercising ALL DAY? I was also arriving in the middle of a flare – my elbow (in the tendon and joint), and in my shoulder, plus fingers flaring up and down. This meant I was extra cautious in all the weight bearing and resistance activities. The shoulder was particularly troubling as it had been constant for over a month, had been really painful and was impacting on my mobility.

On less sleep than I get at home, I found that I had enough energy to do pretty much all of the activities during the week, missing out on only a few. I swam, I boxed, I did silly relay races and team games. I played basketball (badly!), and hiked for 13 miles. I cycled, did circuits, kettle bells and used medicine balls. And at the end of each day, instead of being fatigued, out of spoons and incapable of functioning, I was only as tired as everyone else. Given that the week before, I’d had evenings where the pain had been so bad that I was too exhausted to have a conversation, this was a complete surprise.

As the week progressed, my flares even began to dissipate, and my shoulder, which had been so bad the previous week that I could not lift it above my head, actually made a full recovery. By the end of the week, I was even able to do shoulder presses and other weight bearing exercises with no apparent ill effects at all. To say I was proud, pleased and shocked was an understatement. I was blown away.

By the end of the week, I had cultivated a completely new relationship with my body, and one that had been absent for a while. I actually started to respect it. At 43, it was still pretty fit, still pretty mobile and it was able to exercise for at least six hours a day without paying me back with arthritis flares or fatigue. Yes, I was hurting – but the muscle pain caused by exercise felt like an achievement rather than a punishment.

On the last day, legs heavy from having done about a million squats, and muscles tired from six days of exercise, we walked up a hill for forty minutes, and then did a timed run of just over a mile (1.6 miles I was told). I started at a jog and I continued on from start to finish. I didn’t stop. I pushed myself as much as I could and kept going despite screaming lungs and petulant legs. Finishing (first!) at the end of the test without having stopped once was one of my biggest achievements of the week.

I’ve returned from bootcamp completely in awe of my body and what it can achieve and overcome. I love it for all of its aches, pains, faults and anomalies, for what it can do and what it can’t. I’ve learned that it can do even more than it does already in terms of exercise, and not to be scared of using weights. I’ve learned that inactivity is more likely to use up limited spoons, than activity (which is something I sort of knew anyway), and that I can be as fit and active as the next person. Most importantly I learned that I can still love who I am, (and including my limitations and my arthritis in that), from head to toe, from inside and out.

Big thanks to all the staff at Apples & Pears: Woody and Gary, Katie, Heather, Annie and Harriet.

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Exercise and depression – my experience

I was quite interested to read in the papers last week about some research into exercise and depression which appeared to have found that exercise does not help depression. Reading into it a bit further, it appears that this is NOT necessarily what the research found at all. Instead, it found that interventions to encourage people to exercise did not have much long-term impact, which isn’t quite the same thing.

It led me to think about my own experience of exercise and depression last year. When I’d heard the snippet on the radio news about the report, the first thing I quipped was that the researchers obviously hadn’t ‘prescribed’ Zumba as the exercise to try out! Obviously, this was a joke, but it was also a reflection of how useful Zumba had been to me last autumn.

Around the time I started this blog – and a little bit before – I hit a really bad patch. I was burned out, tired, had had a bad experience with a consultant and altogether, pretty down. I was struggling to function with everyday things, crying a lot and it was a massive effort just to get out of bed. I really didn’t want to see or be with people and I couldn’t stop obsessing about the horrible consultant, or about my palindromic rheumatism.

About the same time I’d found a local Zumba class and had started going as I’d previously really enjoyed it as a form of exercise. I found that it really lifted my spirits and that I really enjoyed myself during the class. When I realised how depressed I’d become, I sat down and wrote myself an action plan. I decided to stop pressuring myself to do any work and cleared the decks for at least a month to concentrate on my recovery. Exercise and going to Zumba was an important part of that recovery. I also decided to see the Dr and to ask for anti-depressants. Although I’ve been depressed a number of times before, and for substantially longer, I had never taken antidepressants, but this time, I felt that I needed them.

The GP asked me the standard questions about depression – about my eating and sleeping habits, about my energy levels, difficulty concentrating and about my mood. She also asked me about enjoyment and pleasure – whether I was getting any. “Yes” I said, “but only during Zumba class”. “And is there anything you look forward to?” she asked. I struggled to think of anything I was looking forward to before answering “Yes! My Zumba class!” The Dr decided (perhaps on the strength of these two answers) not to prescribe anti-depressants, to recommend counselling and advised me to keep continue going to Zumba.

While I wouldn’t be as flippant as to say that Zumba ‘cured’ my depression, it was an important element in my recovery. There were some days where I spent the whole day in bed crying, but for a whole hour during Zumba, I stopped. Sometimes I even felt happy. Even if it was only fleeting, those moments of pleasure and happiness were a light during a dark time. I prioritised going to the classes, saw an excellent counsellor, started the blog, took St John’s Wort and started meditating again. I also told everyone I knew and was very open about being depressed. I felt that it meant that I did not have to put on an act, which was an additional pressure I did not want.

Gradually, probably because of ALL of those things, the darkness lifted and I realised that I was no longer depressed. Would I have recovered as quickly without my exercise fix? We’ll never know. I do know that I didn’t go to Zumba because the Dr had told me to. I went because I enjoyed it.  I went because the morning classes gave me a reason to get out of bed, to get dressed and to leave the house. I knew that if I did not do those things, then I would not get my ‘happy fix’.

I believe that people’s relation to exercise is very individual – lots of people on the Guardian blog quote exercising outdoors or running as their saviour. Although I cycled throughout my depression, and it did make me feel good, it didn’t have the same emotional or physical impact on me as the Zumba. It wasn’t just ‘exercise’ that helped me, it was the type of exercise I’d chosen. My class is a dance class with a friendly atmosphere and a great teacher with a sense of fun. Not someone shouting at us to move our bodies or feel the burn, but someone who encouraged us to laugh along and to enjoy ourselves. It was also an exercise which gave me positive feelings about my body when part of the root of my depression was negative feelings about my body and my PR. Would the gym have given me an equivalent ‘high’. I very much doubt it? In fact, I suspect it may have made me feel worse!

I don’t see the counsellor any more – in fact, just a few sessions with her were enough. But I am still meditating and needless to say, still Zumba-ing. Even though I’m a lot happier in myself, my Zumba fix is still crucial for both my physical AND emotional well being. It’ll take more than a bunch of scientists to convince me otherwise.

Drawing conclusions is never easy

My experiment with antibiotic therapy will soon come to a close. I’m due to see my consultant at the end of next week, and the new GP the following Monday. Things had improved quite a lot in March and April with fewer flare-ups than I would otherwise expect. Energy levels were still pants, but I don’t know that the antibiotics would have improved that aspect of the condition or not.

Things took a turn for the worse in May. I had some kind of pain or flare up for half of the month. Most flare ups weren’t particularly BAD or debilitating, but it did lead me to wonder that perhaps my arthritis was just mild in March and April rather than it being due of the antibiotics working any magic. So far in June, I’ve had pain almost every day. Again, nothing too debilitating, although annoyingly it’s been in my knees more times than I would like. Nothing’s been so bad in the past week that I’d need to take any time off work, but it is still pain and I’d rather not have it!

So, I’m forced to wonder that if it is working, is it working enough? Should I take it for another three months to see if it’s stopping all the really BAD attacks, or should I just give up? Should I see if I get worse if I stop taking it? Or should I move straight onto methotrexate?

I’m not that disappointed – after all, at least I haven’t had any really debilitating flare ups in the past three or four months. But I’m just weary of all the questions and decision-making. Not for the first time, I wish that the medical profession understood my condition better. I wish there weren’t so many uncertain choices to make. And I wish that the drugs on offer didn’t have so many scary-sounding side effects.

On the positive side, my energy levels have also been inconsistent – which is a positive thing, because it’s meant that some days, I’ve had lots of energy reserves! On some days, I’m still waking up feeling as if I’ve had no sleep at all. On others, meanwhile, I’ve had an excess of energy! I even managed to find enough energy at the end of a working day to dance on stage with Angelique Kidjo when she played Manchester, (along with around 15 other people). It was a totally exhilarating experience and I was so proud of feeling brave enough to do it! I’ve managed to be relatively consistent with going to zumba and am still cycling most of the time. Some days, I’ve even had enough energy to cook a proper meal at the end of the day. It happens so sporadically during the working week that it seems like a major achievement whenever I do manage it!

I’ve also been assessed for Access to Work benefit, which is something that I only recently found that I was eligible for. I was surprised to find that the in-work assessment was actually useful than I expected with a number of suggestions and recommendations that I might follow up, whether or not I get funding for them. I’ll write in more detail about it in another blog – probably when I get the assessment back in writing.  I’ve actually got quite a lot of work on at the moment – hence the scarcity of blog posts – but I haven’t forgotten that the blog exists and will do my best to update on both the assessment and in the consultant appointment as soon as I can.

A doozy of a flare-up

So, it seems that I spoke too soon last week, as pretty much, the afternoon after writing that blog, a nice old flare up started to creep up on me. It wasn’t too bad at that point – creeping into my hands for most of the weekend, making them stiff and sore. However, on Sunday my knee got pretty bad. I wondered if I’d done something during a home pilates workout the day before – perhaps I’d pulled something when I was doing a stretch? By Sunday night, going up and down stairs was getting too difficult  and so once I’d gone up to bed early evening, I stayed there.

By Monday morning the knee pain was all gone. So not an injury then but part of the flare up. No pain for the rest of that day until…. until I got home late that night. I’d gone over to Leeds to see one of my favourite bands of the moment with a few friends. We’d got back into Manchester at 11.30 and by 12, I was already in bed, having shelled out for a taxi home from the station. The knee pain was creeping back on, but I stupidly thought that it would be fine as I’d sleep it off as I had done on Sunday.

It was not to be. The pain creeped up and up on me in the knee, my hip and in my hands and fingers until it was louder than my urge to sleep. I lay in bed, dozing off and on and listening to my audio book of the moment (Bill Bryson’s Notes from a Small Island) and praying for sleep. By 5am, I realised that I was no longer half awake but properly awake and I made myself hobble out of bed and get a heat patch to put onto my pyjama bottoms to try and bring some relief to the poor knee. By the morning, the pain was still pretty severe. Walking was pretty difficult and some of my fingers were swollen too. There was no way I was going to get downstairs, so I was particularly thankful that my partner (recovering from a heavy cold) was well enough to bring my breakfast up for me.

I was supposed to go back to my expert patient programme but there was no way I was physically or emotionally up to it. I’m always a little emotionally fragile during a bad attack, even more so when I’m also hormonal AND haven’t slept. So when I realised that I was not mobile enough to go to zumba, I just burst into tears!

I spent the morning in bed, feeling a little sorry for myself, but mainly being pissed off at missing my dose of happy through Zumba. The attack started to ease off at around lunchtime and by the afternoon I was able to cycle (it was easier on my knees than walking) and visit a friend, bringing along copious amounts of cake with me. By the evening, the pain was all gone, and all I was left with was exhaustion from not having slept the night before.

As I write, it’s now Thursday and I’m pain free again. Seven years into this condition and I still get surprised at how rapidly a flare can come on, and how rapidly (relatively) it can completely disappear again. The other thing this flare highlighted is how useless most of the painkillers are. I have been prescribed Naproxen, but you’re supposed to take it with food. Pretty useless if an attack starts in the middle of the night. Mind you, when I have tried taking them with food, they didn’t do much anyway.

I’m not too disheartened by this week’s flare. It only really left me incapacitated for one day, which on the scale of things isn’t too bad. I just wish it hadn’t been my zumba day! Next time it strikes, I hope that its timing will be better!