Research into PR finally!

I have just returned from Chapel Allerton Hospital in Leeds where I was able to sit in on a presentation to the Patient and Public Involvement group about Palindromic Rheumatism and the research there into PR (funded by Arthritis Research UK) and also early arthritis.

There were three presentations in total, two specifically on PR. I think I need a little time to digest it all as there was a LOT of information given in a very short space of time (half an hour for each presentation). However, I thought I’d blog now about some of my initial impressions.

Firstly, it’s great to know that there is finally some research specifically into Palindromic Rheumatism. As anyone who has read my blog for a while will know, there is precious little research into PR itself. So, I was really pleased to hear Prof Emery say that PR was particularly interesting to study, NOT just for getting a better understanding of PR, but also for possibly improving our understanding of rheumatoid arthritis too – after all, some of us with PR will go on to develop RA. But not all.

Another thing he said –though not in his presentation – is something that I think is pretty important, but not something I have considered before. We were talking afterwards, and he said that there was something going RIGHT about my auto immune response in that it was able to switch itself OFF. I hadn’t thought about it in that way before. I mean, yes, I’ve often felt grateful that in ten years, I’ve got no obvious joint damage and have not apparently progressed to RA (though this does not mean I won’t in the future), but I’ve always thought about my inflammation and flares as something going wrong in my immune system, rather than thinking about the fact that I have days and sometimes weeks of no inflammation and pain as something going RIGHT! As Prof Emery said – there is something going right in that the inflammatory response switches itself off and I go back to ‘normal’, whereas for someone with RA, the switch is almost permanently set to ON (as I understand it)….

It leads me to think that it’s probably equally important to look at what’s going RIGHT with people with PR as well as what’s going WRONG in order to understand it better and possibly help prevent progression to RA – and maybe even prevent flare ups altogether? I had truly never thought of it like this before.

The second presentation was about the results of research into people who had a diagnosis of PR. The numbers were small – only 58, but the results were still interesting. Of the 58 people, 48% did not (during the time of the study) progress to RA, and 52% of them did. One of the most interesting thing about the findings was that there seemed to be three things that seemed to make it more likely for someone to develop RA (any one of them increases the risk of developing RA, but if someone has all three, that will increase the risks even more).

  • Smoking. I find this particularly interesting. I had never known about a link between RA and smoking, and I can’t give up something I don’t currently do but it could be useful information to PR patients who do smoke as an extra incentive to give up.
  • The intervals between flare ups were smaller in those who progressed than those who did not. Sadly (for me), the intervals between my flare ups can be really short – though they seem to be getting longer since I’ve been following my new regime.
  • Anti-CCP (ti-cyclic citrullinated peptide antibody) – was a big indicator and seemed to be very significant. I can’t remember the figures here, but high levels of Anti-CCP seemed to indicate that people were more likely to progress to RA than those who did not have any or had lower levels.

As Prof Emery said – if we can understand better who is more likely to develop RA, then we can intervene early with treatment in order to perhaps prevent RA developing and joint damage happening in those people.

As soon as I got home, I went to look at my last lot of blood tests to see what mine showed. I couldn’t see whether or not they had tested for Anti-CCP, but on the letter to my GP after my appointment, it said under diagnosis that my CCP antibodies were negative, so they must have tested me for it at some point. I’m not sure how recently that was.

All the presentations were very interesting, but it is a passing comment that Prof Emery made that also piqued my interest from a personal perspective. Just towards the end of the session, one woman in the audience told us how starting to exercise – first by doing swimming and then tai chi – had made a huge difference to her life. Prof Emery responded to this by saying that the immunology of exercise was very interesting and that exercise could make a difference to your immune system, and that further research was needed, but that he believed that it could be an important therapy for RA, possibly improving the immune response.

It made me remember my own experience earlier this year at the bootcamp – how six days of intensive exercise did not exacerbate any pain or flares, but actually made my flare disappear altogether (after a six month almost permanent flare). And it also reinforces my belief that my regular yoga practice and exercise regime (almost daily cycling, plus zumba classes twice a week, sporadic pilates classes and daily home yoga practice) is probably as crucial to my current and future health as any drugs I might be taking.

So, what conclusions can I draw from what I heard today? Well, I’m definitely incredibly happy to know that at least someone finds PR interesting enough to study. However, it’s not likely to make an immediate impact on me or other PR sufferers.

I truly do believe, however, that taking care of my health holistically could be the key (in my case) to managing my symptoms and helping my immune response right itself. In me, this means following my current diet regime, doing lots of stress management (yoga, meditation, exercise), continuing to exercise (not just for the happy and stress-busting impact, but also for the immune system too, as well as helping keep me mobile, supple and build up strength), and managing my energy – resting BEFORE I need to and not overdoing it. Since I have been stricter about this holistic approach to my health, I have had more energy (I am even able to work a full 7 hour day, which would have been unheard of this time last year), fewer severe flares, and more pain-free days. Long may it continue.

Thanks for reading and thanks to the Leeds Musculoskeletal Biomedical Research Unit for having me along today. I apologise if there are any inaccuracies in the blog – I was writing as quickly as I could during the presentations, and so it’s highly possibly that I misunderstood or misinterpreted something!

November News

It’s been a while since I last wrote, and happily, the summer flares that plagued me throughout July and August have subsided, and I’ve had a pretty calm Autumn.

Just after I wrote my last post, I saw a rheumatologist who ordered a whole raft of blood tests – five vials full! I got the results through my GP surgery, but they couldn’t make head nor tail of them as they hadn’t ordered them (!). My vitamin D levels seem pretty low – which given I take supplements AND I had been outdoors a lot in the summer, seems worrying to me. Neither the GP nor the rheumatologist thought it was worth taking any action on. Other levels are mostly normal, except for one marker that the rheumatologist said was consistent with inflammatory arthritis. Clearly, if he isn’t worried, then I shouldn’t be.

The main thing that came out of that appointment was a diagnosis of something new. Fibromyalgia. It was quite upsetting at first – getting a label of another chronic condition on top of the one I already have. Particularly as Fibromyalgia appears to be little understood and some medical professionals don’t even believe in it. But as my mum said, I’m already living with the symptoms, so getting the diagnosis shouldn’t really make much difference, particularly as there aren’t really any decent treatment options that seem to be appropriate for me.

The diagnosis has helped in some ways. It explains why my neck and back can be incredibly painful, despite the amount of physio I’ve had, and regular pilates and yoga that I do. It also explains why, when I don’t do any exercise, I feel like I have fewer spoons (and less energy) than when I do. My funny symptoms – the ones like my skin feeling sunburned or super sensitive, could also be down to fibro. So it’s good to finally get an explanation for that.

Since my last blog, I’ve had gluten twice. Both were small amounts and on both occasions, I was convinced that it would be fine, and it was too little to make a difference. After the first time, I had a three day flare that was pretty bad and painful – more so than anything I’d had for a long while. The day after the second occasion, I felt totally out of spoons and full of brain fog.

Coincidence or caused by the gluten? It’s difficult to know, but both incidences are enough to persuade me that it’s worth staying off gluten. I do feel as if I have more energy without it and I’m still eating healthier.

Since September, I’ve also been doing a daily morning yoga practice (just 15 minutes if I’m short of time, 30 if I’m not) on top of my meditation. The yoga is helping with general stiffness and pain, and is good for my energy levels too. It’s the first thing I do when I wake up, and it’s a great way to start the day. I’ve got a bunch of asanas that I like, but before I felt confident in self-practice, I used some online videos, including some from a website called Do Yoga With Me and the  30-day yoga challenge by Erin Motz

As far as my diet goes, I’ve got even stricter with what I eat and don’t eat. So, as well as totally avoiding gluten, I’m mostly avoiding dairy (mainly having goat’s or sheep’s dairy if I’m going to have any), still largely avoiding refined sugar, – (refined anything actually), avoiding additives and processed food and making as much food from scratch as I can. I don’t eat meat – but that’s not a new thing.

I’ve mainly been following recipes from Honestly Healthy  which recommends an ‘alkaline’ diet (which I guess is what I’m following). I have two Honestly Healthy cookbooks, which are great. I’ve also got a few nice recipes from Deliciously Ella.  Both are good sources of vegetarian, dairy free, gluten and sugar free recipes.

I also went back on a detox retreat, run by Olive in Spain. It was the second time I’d been and was as wonderful as the first time, which I reviewed for Queen of Retreats. I came back bouncing with energy (as I had done the time before).

The retreat reinforced the path I’m currently taking, and so I want to be as disciplined as possible, as far as I can. Hence the ‘mostly’ and the ‘largely’ when it comes to dairy and sugar. It goes without saying that I’m not drinking a lot of alcohol, and I’ve even cut down on coffee. So far, I’m pretty positive. I still get flares but they seem to be shorter lived, and I’m still having long periods of no pain (two weeks and counting currently).  My energy remains pretty good overall too.

The biggest challenge to the whole diet thing remains (as it was in August), eating out. That, and occasions where everyone brings in cake that I can’t eat.  This means that I imagine that the upcoming festive season is going to pose the biggest challenge yet. But I plan on making lots of lovely GF/Vegan/sugar free treats so that I don’t feel too left out.

If you want to know more about the types of food I’m cooking and eating, you can follow me on Instagram where I’ll post occasional photos.

Thanks for reading. : )

Some of the delicious meals served at Olive Retreat

Some of the delicious meals served at Olive Retreat

desserts at Olive Retreat - all sugar, gluten and dairy free.

Desserts at Olive Retreat: Sugar, gluten, dairy free.

Reporting back on my gluten free experiment

Reporting Back

The last time I blogged back in April, I was about to give up gluten, cautiously optimistic that it might improve the severity or duration of my flares. For about two months, I was practically pain free. I had continuous runs of days with no pain or flares or fatigue at all. I even had a full 18 day pain free run – the longest that I can remember for quite a while. I had good energy and when I did flare, it was short lived and generally mild.

I was strict with the no-gluten thing, and gleefully filled out my pain record app with 0 pain and 0 joints flaring more times than I had done since I’d started keeping records in September last year. I thought I had it cracked. Finally, after 10 years of not knowing what causes my flare ups, I thought I might have worked out a cause. And so that’s what I cautiously told people, that I may have cracked it. It felt like a major achievement. A eureka moment. A miracle. If only I’d known this years ago, I said.

And then… the flares resumed. Sometime, around mid June, my joints started complaining again. As before, there appeared to be no pattern. It felt as though my body was playing games with me. Flaring in a toe one day, my elbow the next, hopping from joint to joint, varying in its severity and length of time in each joint. I woke up every day, trying to guess where it would land today, and wondering how bad it was going to be. It felt like the arthritis was taunting me. “You thought I’d gone away” it seemed to say “but really, I was just sleeping for a while. Taking a rest. Now, where shall I hang out today? Shoulder? Maybe. Little Finger. No. Too insignificant. Wrist? Yes, why not? Not been there in a few days.” 

Still, there were pain-free days – sometimes as many as three in a row. But over the last month, there have only been four of those, and again the balance is tipped again, with pain and flares being the norm, rather than no-pain. 

Yet, I’ve continued to the no gluten diet. And it’s been a pretty healthy way to live overall. I’ve eaten way more fresh fruit and vegetables than I ever did when I did eat gluten, and avoided lots of sugary treats. I’ve got pretty inventive and imaginative in the kitchen, and have enjoyed making sugar-free, gluten free and vegan treats such as courgette and apple muffins, or brazil nut cookies from my Honestly Healthy cookbook.

So, here’s what I’ve concluded of my gluten free experiment.

  • My energy and fatigue has certainly still been better OFF the gluten than on it, even once the flares returned.
  • Eating out as a non-meat eating, dairy avoiding gluten free person is a nightmare and minefield.
  • I am using a lot of almond flour and dates in home-made treats
  • I’m eating WAY more salads, vegetables and fruit than I ever used to, and this is probably a Good Thing
  • I’m eating a much more varied diet too – eating lots of different salads for lunch instead of resorting to cheese on toast, or a cheese sandwich
  • Store-bought gluten free bread is rubbish and not really a real replacement for a decent healthy wholemeal, granary loaf.
  • Eating on the go is almost impossible. I’ve had to be prepared and bring lunches with me whenever I can, and things to snack on.
  • I’ve enjoyed being prepared – making gluten free pancakes on a Sunday to last the week, or sugar-free snacks to take to work (I have a new job).
  • I have NO idea whether my two pain free months which coincided with giving up gluten were a complete co-incidence or directly related to the giving up of gluten

So, I’ve decided to keep up the gluten free diet for a while longer. I think it’s better for me, I think it’s good for my energy, and if it isn’t the only cause of my flare ups, it could well still be a contributory factor. As long as I can eat a healthy, varied and balanced diet without gluten, I think I’ll continue.

I am going back to the rheumatologist at the end of the week. The last blood tests were clear, indicating that I’ve not yet progressed to rheumatoid arthritis. Not sure whether to try a different lot of ‘disease-modifying drugs’ (I’m still on hydroxychloraquine) in the hope that they will silence the flare ups more permanently. The trouble is, these drugs come with so many side effects (plus regular blood tests) that I am scared to try them. I spend so much time and energy not putting chemicals and horrible stuff into my body by eating healthily, do I really want to take a rather toxic drug? If it ‘cures’ the flare ups, will it be worth it? I can’t even be sure it’ll definitely work. So, I’ll probably put it off for yet another year, or until I can’t bear the flares any longer.

And the truth is, while the pain is a pain, I’m still functioning. I’m still working. I’m still pretty happy. I feel mostly good. I’ve faced the disappointment of the returning flares, and grieved for the pain-free days. I’ve had to re-realise that I can’t control my flares or my arthritis – no matter how hard I might try or how much I want to. And so if I have to live with it, I’d rather do all I can to stay well and healthy with it. 

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.