Going gluten free

On the palindromic rheumatism facebook group, there are often posts from people wondering whether there is any link between diet and their symptoms. I’ve written about this before, and have never really been convinced that my flare ups relate to any particular food or food groups. I tried keeping a food diary, but there was no conclusive results in two months and so I just stopped doing it as it got really tedious! Eighteen months ago I drastically cut down on sugar, in the hope that it could be a culprit. It sort of helped my energy levels a little, but I didn’t think that it was a cause of any flares.

Yet on the facebook group, a number of people DO seem to feel that some foods do trigger their symptoms, though the foods themselves are not the same for everyone. Variously, they single out gluten, sugar, MSG, artificial sweeteners, tomatoes, and processed foods. Meanwhile, plenty of well-meaning people continue to advise me to give up various different foods, convinced that they are the cause of arthritic symptoms.  There also seem to be lots of people online talking about following an alkaline diet or the ‘paleo’ diet. I’m not so sure myself. The paleo diet seems to be very meat-based and as I haven’t eaten meat since 1990, it’s not something that appeals!

One of the things that comes up a LOT when people talk about diet and arthritis is avoiding gluten. But I’ve been quite resistant to giving it up. After all, gluten is in lots of foods, and I do really love bread and toast and so I’ve never really given it a go. I already avoid sugar, meat, various dairy products and follow a low-GI diet as much as I can. Do I really want to cut out another food group?

And yet…

When I was at the Apples & Pears fitness bootcamp, my symptoms completely disappeared. Even the flares that had been ‘stuck’ in joints for weeks and months went away. Part of me is convinced that this is down to the exercise getting rid of all the stress that had built up in my body after a bereavement and having builders in the house. But another part of me also wonders – could it be down to the fact that my gluten intake during that week was very low? Or could it be a combination of the two?

Even more confusingly, when I got home, I flared up within 24 hours of getting back. It could have be the stress of being back in a builder-infested house. Or, it could have been the slices of toast that I had the evening I arrived home.  So, I decided to cut out gluten and see what happens.

It’s been ten days now since those slices of toast. The returning home flare-up disappeared soon afterwards, and I have had quite a few more pain-free days with only very mild flare ups in my fingers after a very long day at work. It’s too early to draw any real conclusions. I’m going to have to stick with it for a couple of months and monitor symptoms during that time. If I haven’t flared by then, I’ll try reintroducing gluten and see whether it triggers anything.

Justin, my partner, reflected that this whole process was a win/win situation. Either gluten triggers my symptoms – in which case, I can control (to some extent) my condition by avoiding it. OR it doesn’t. In which case I can have toast and bread again! :) Either way I win.

I am using rheumatrack, an app, to monitor my symptoms, so I will have something concrete to refer to at the end of the experiment.

So far, I haven’t found it too tricky, but I imagine it will get harder as time goes on. I know I’m going to have to be more prepared with my lunches and bringing food to events with me. Any suggestions, advice or good gluten free recipes welcome!

I promise to report back.

 

 

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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How far I’ve come

I’m flaring at the moment quite badly. In fact, it’s probably the worst overall flare I’ve had for quite a considerable length of time. Years I think. I’m in some sort of pain constantly. The elbow flare which has been in my elbow since September, is limiting my arm mobility a little (I suspect it’s now in the tendons), and the shoulder of the same arm is restricting other movements (pulling up my trousers being the most painful action). They’ve been pretty bad for a couple of weeks now, but in the past week, my wrists, all my fingers, and the rest of my hands all decided to join the party. This has meant that restful sleep is becoming harder and harder as the cramping in the hands during the night wakes me or causes painful pins and needles. My knees occasionally give me twinges too, just to let me know that things could still get worse!

It’s a pain – quite literally – and yet, I’ve also felt quite happy too. It’s strange, but this flare has been a good opportunity to assess how far I’ve come since I was diagnosed and how different I am at dealing with this illness, the pain, as well as the restrictions and unpredictability.

I now meditate daily. I have been doing this for nearly a year. Among other things, it is giving me an opportunity to listen to my thoughts and to tackle some of the unhelpful ones. I realise that talking about ‘fighting’ this flare is not helpful. It’s combative and aggressive, and the arthritis is aggressive enough without getting into a fight! Instead, I’ve reframed this to thinking about ‘riding it out’ instead. Bearing with it, and accepting it. Going with the flow or surfing it even.

My meditation practice and work around compassion and self-compassion that I’ve been doing has meant that I’ve been kinder to myself. I used to get frustrated by what I couldn’t do, and angry and maybe even try and do too much or overdo it. Now, I am able to recognise the signs of overdoing it, and I’ve been ‘indulging’ in plenty of different pleasant activities to help me feel better psychologically. I am suffering enough, why make myself suffer more by feeling angry at myself, frustrated or punishing myself by trying to do things that will cause me more pain? I have nothing to prove to myself.

I’ve been much more objective about my pain and my flares. My partner says that I am less emotional about it. Which I suppose is the same thing. I’m not identifying with it too much. It has an identity, my disease, but it’s almost as if it is a separate entity to me. It has its own timetable, it will do what it does, I can only live alongside it. Again, my meditation practice has been essential for helping me to develop this way of thinking and to put it into practice.

I’ve not only been able to accept help from friends, (and ask for it), but I’ve actually felt pleased about saying yes. In times past, I would have resented the fact that I needed help, and either refused it, or accepted it and felt very guilty and like a failure. Now I realise that if someone offers to help it’s because they want to, and therefore by accepting it, I’m allowing them to do something positive – which is good for us both!

I am still exercising. Doing what I can, and staying within my limits. If I’m going to be in pain ANYWAY, then why not be in pain doing something that I love! Just so long as it isn’t going to make me worse. So I have been going to zumba (but just not using my arms!), cycling (I’m still safe to do this), and doing yoga or pilates almost daily. The low impact exercises are great because there is a lot of muscle tension around the joints and the flares, so these practices allow me to relax and stretch out. When there are things I can’t do because I’m restricted or they hurt too much, I just don’t do it. But the rest of my body is definitely benefiting from being allowed to do some sort of activity. And these activities continue to give me spoons, rather than using up spoons I don’t have.

I don’t know how long I’ll be flaring for. I assume it’ll be a while. I have builders in my house. They’re not going any time soon. I assume the flares will leave sometime after they do. But I do not worry or feel anxious about the timetable of it. I have been relatively pain-free before. I will be again. That’s enough for me.

But I want to make one thing clear. Accepting my flares and my pain is not the same as giving up! I’m throwing everything I can to try and help ease the pain and shorten the flare. I’ve bought some castor oil to try, some Epsom salts to bathe in, some devil’s claw gel to rub in. I’m upping my daily medication dose. I’m using hot water bottles and icepacks. Sometimes simultaneously on different parts of the body! I don’t have expectations about whether anything will work. But some things give me at least a little relief and I think it’s worth a try anyway. I’m vaguely considering having my friend who has got a cold sneeze on me, because if my immune system has to start fighting that, then perhaps it’ll stop attacking itself! Vaguely considering it. Not seriously! But when you’re in pain and have restricted mobility, sometimes you’ll try almost anything!!!!

So yes, this flare is a pain. But it’s a world away from my experiences before my meditation practice. And a good reminder to keep it up, no matter what life decides to throw at me.

A Day Without Spoons

A day without spoons

When I asked my rheumatologist a few years ago about the fatigue I’d experienced since developing my arthritis, he told me that it wasn’t related. In the new Arthritis Research UK leaflet on PR, it says that fatigue can accompany a flare, but that you are symptom free in between. My own experience, and that of others with PR, does not echo either my rheumatologist’s statement or the Arthritis PR leaflet. Here’s my description of what a day without spoons (energy) is like:

A day without spoons can come without warning. Sometimes it seems understandable — I’d done too much the day before – whatever too much means. But it’s not always as simple as that. If it was as simple as exerting myself too much, not sleeping enough or working too long and too hard, I’d have a day without spoons every two or three days. My morning Zumba classes would be off the menu for good and I’d have to cut down the time spent sat at the computer. But it’s not as simple as that. The spoonless day is as mysterious as the flares that typify my palindromic rheumatism and as variable and unpredictable. It comes out of the blue, often without warning, and then just disappears, just as mysteriously and often as quickly too.

It’s not always clear when I wake up how many spoons I’m going to have. Sometimes I know immediately. My head feels heavy and both mind and body feel as though they’re stuck in the deepest part of sleep even though I know I’m awake. Those are the kinds of days where it can take me two hours to muster up the mental or physical energy to leave my bed. Those are the days when I’m thankful for J who will bring me breakfast without complaint and a coffee to try and chase off the remnants of sleep. By that point, however, I know that it’s pretty much too late for me. There’s no point trying to get out of bed or to plan to do anything. There are no spoons and that’s how it is.

Other days, I don’t realise the scarcity of the spoon situation til I’ve been up a while. It’s sort of like my mind and body are on automatic. I get up and breakfast and have a coffee, and meditate (my general morning routine) and sometimes I even get as far as doing something or leaving the house before I realise I’m not quite right. In fact, I’m far from right. My legs, the ones with the power, muscle and energy to get me from home to town on my bicycle, the legs that are happy to dance for an hour to Zumba with enthusiasm and verve suddenly feel as weak as someone who hasn’t got out of bed for a month. Walking isn’t as easy as putting one foot in front of the other but is a supreme effort, like walking through treacle or heavy mud up to my knees or even my waist (though I’ve no actual first-hand experience of either). It’s like walking at altitude (and that IS something that I have experience of), when it just feels that the oxygen is not getting to the muscles to give them the fuel to work properly.

And then there’s what happens to my brain. Usually pretty quick and alert, I’m suddenly rendered pretty much incapable of forming a sentence or making a decision. I can spend ages searching for the right word, trying to pull it out of the fog clouding my memory and eventually give up as the searching is using spoons I do not have. Justin will ask me a simple question – such as whether I want a drink or what might I want to eat. I understand the question but I cannot seem to access an answer. Deciding or working out what I might want, again, uses spoons I simply do not have. I honestly do not know. Coffee is nice. I enjoy the taste, but it doesn’t give me spoons I don’t have. Often these symptoms are accompanied by a sore throat, though it isn’t always the case.

Having no spoons is like having flu. Getting out of bed to go to the toilet is an effort. I feel light headed and weak and it takes me a while to recover from the short walk from room to room. The fatigue is so overwhelming that it, in itself, is almost painful. Thinking takes spoons. Sometimes, sitting up takes spoons. I just want to close my eyes and sleep, but I know that sleep won’t restore spoons when there are none to be had that day.

On a spoonless day I know that there is nothing for it than to give in and be ‘ill’. There’s no point forcing anything or wishing it was any different. Some days are just like that. Then I’ll go to sleep at the end of the day, sleep a full night and wake up the morning. “Are they back!?” I will wonder to myself. Standing up, I realise that I have not come down with a flu or got a virus. The sore throat is gone and I feel completely normal.

My spoons are back to ‘normal’ levels again. It’s not even a partial return of spoons, but I’ve got the full complement again . My muscles have enough oxygen to work properly and my brain knows how to find the words it needs to form a sentence. The difference for me between a no spoons day and another day is pretty dramatic. And, unlike a flu or an actual virus, there is no recovery period. It’s as if the day before had never happened, and I’m back to normal again.

Thankfully the days without any spoons AT ALL aren’t that common. And they don’t always tie in with a flare– in fact, they very rarely do. There is often no flare, pain or inflammation at all. But they are part of my PR, and part of the experience of lots of others with this weird and mysterious illness. They need to be taken seriously by the medical profession as one of the symptoms of PR and need to be understood by others that it’s not just like feeling a bit tired or worn out. It’s more than that. Much more.

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.

Research into Palindromic Rheumatism

One of the problems of having a relatively rare condition is that there is very little known about it. This means that it can take months or even years to get a proper diagnosis because not all rheumatologists have heard of it, and certainly most doctors haven’t. PR is particularly hard because symptoms aren’t always visible but even when they are, by the time you get to see the Dr, they may have disappeared completely. This means that not only are people having to deal with flare ups of pain and fatigue, but without a diagnosis they can’t get proper treatment. There’s also quite a big psychological impact of having a bunch of, frankly, weird symptoms and not having a diagnosis.

Of course, the problems don’t just stop once you know what condition you have. What treatment you get is very dependent on the quality of your specialist and on how much knowledge they have. But even the ‘best’ clinician is still limited because the body of research into PR is so small.  This means that, even though there’s been a bunch of research into other types of arthritic diseases, there’s very little known about this specific one. Treatment – as you’ll have gathered from reading my blog – is very much trial and error, and usually based on the treatment for rheumatoid arthritis.  I had symptoms for over two years before I actually received any disease modifying drugs because my original clinicians didn’t take my condition seriously. Yet, because there is the potential for PR to develop into rheumatoid arthritis, it could be crucial for treatment with disease modifying drugs to start early to minimise the chance of this happening.

The other difficult thing about having a rare condition is that, as a patient, it’s really hard to get information about it, to discover whether what you’re experiencing is ‘normal’ and to hear about different ways of coping or dealing with the flare ups or pain. When I was first diagnosed, Arthritis Care had a leaflet which was completely inaccurate. It said that PR did not attack multiple joints at once, which is definitely not my experience at all. Thankfully, this leaflet has now been updated.

There is some good news. Arthritis Research UK are starting to do some research into PR. During the first stage, they will be asking anyone diagnosed with PR to complete a survey and to share their experiences. So if you’ve come across this blog and have PR (or think you have?) and haven’t filled out the survey yet, then please do go and fill it out. Hopefully the project will also raise awareness of PR and make it easier for new people experiencing symptoms to get a diagnosis and treatment.

http://www.arthritisresearchuk.org/palindromic