Category Archives: Palindromic Rheumatism

A quieter time

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

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

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

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

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

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

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

 

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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.

10 things you may not know about living with arthritis

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

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

I was diagnosed aged: 34

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

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

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

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

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

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

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

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

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. 

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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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.

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.