Advice I wish I’d received

I’ve been contacted by a few people over the years about how helpful my blog has been, and how good it is to connect with others with the same condition. I have been thinking about how frightening it was when I was first diagnosed, and how much I would like to have had some advice about how to get taken seriously, and how to handle appointments with health professionals – whether it’s the GP or rheumatologist. So I thought I’d put a page together with some hints and tips for people which will sit on the site permanently. Please feel free to add comments and your advice to the page.

three months in

According to the literature, methotrexate is supposed to kick in after about three months after your first dose. I’ve now been on the medication for 13 weeks, so I should be starting to see an improvement in frequency or/and severity of flare ups sometime soon – if it is going to work, that is.

People keep asking me if it’s working and seem to find it difficult when my reply is “it’s still too early to tell”. I guess, three months is a long time to people, and there is an expectation in our culture of wanting things to happen immediately. After all, when you take a pill for a headache, you would expect your headache to go pretty soon afterwards. Unfortunately, the drugs for arthritis don’t work that way. Three to six months is what I’ve been told, so I’ve still got a way to go before I know for sure what difference it’s going to make.

One thing I know for sure is it definitely hasn’t started working yet – or if it is, it’s not doing a good enough job. I’ve been in pain most days for the last two or three weeks. It’s mainly been in fingers, wrists, hands and shoulders – though thankfully not all at the same time. It’s been flitting from joint to joint in its mysterious way and it hasn’t been much fun.

I’ve also noticed some unwanted side effects from the medication. My mood has been quite erratic (more so than usual), with me feeling quite down and tearful some days, and fine the next. My fatigue has also definitely been a lot worse than it was before I was taking the drug, with more frequent very fatiguey and foggy days, and feeling pretty tired more days than not. I’ve also noticed it has affected my ability to exercise  – I am getting out of breath a LOT quicker than I would expect – and my legs feel heavy and tired when I cycle or do zumba, in a way that they didn’t used to do quite so quickly.

I’ve been tested for folate, iron and B12 deficiency, but that’s all fine, and so it’s likely just to be a side effect of the methotrexate. A pharmacist explained that the drug could be impacting on the body’s uptake of oxygen, so things are fine when I’m at rest, but when my body needs oxygen – when it’s cycling, walking upstairs or zumba-ing – it’s just not getting it quickly enough, hence getting out of breath. He didn’t say whether my body would get used to it. It’s quite demoralising.

It’s also quite demoralising having these side effects but no improvement yet. I’ve decided to give it to Christmas before making a firm decision – but I’ve been a little low about the choice that I might be faced with if it DOES work: Do I plump for a) no pain but fatigue,  tiredness and really depressed/low days, or b) having flare ups as before, but increased energy levels. It’s not really a great choice is it?

I guess I’ve also been a little low because there was always this slim hope at the back of my mind that methotrexate would somehow be the ‘fix-it’ cure that I was looking for. So if this doesn’t work, then I have to accept (once again!) that I’m probably stuck with this disease, with the pain, fatigue and all the other things that go alongside it. Of course, there might be other drugs to try, but as PR doesn’t cause joint damage, I’m unsure whether I will be prescribed them.

On the plus side (because there is always a bright side), I’ve had a fantastic yoga holiday in Iceland where, despite flare ups nearly daily, I managed to get through some amazing yoga classes with my body doing things I honestly thought it would never be able to do. The experience of doing daily intensive yoga classes has left me feeling much more IN my body than it was before, and also feeling quite positive about my body, despite its limitations. I know that yoga and meditation is good for my mood and my physical body and it’s made me want to try and prioritise these practices even more.

handstand

Yes, that’s me! Despite frequent wrist flares (and with a lot of help getting up there) I managed to do a handstand. It did not cause any pain or flaring and it felt amazing knowing I have the strength to hold myself upside-down

Methotrexate update

Just a quick post update on the methotrexate. Obviously it’s way too early to know if it’s doing anything at all for the underlying illness. I’m only three weeks in after all. But so far, it does not seem to be disagreeing with me – in that the most common symptom that people have reported (nausea and sickness) isn’t something that I’ve had too badly at all. I’m surprised by this as I’d almost expected it to be terrible, as lots of people I know have said it was for them, but in fact, it has been quite mild, and definitely bearable. The rheumatology nurse said that if I hadn’t experienced it by now (that I’m on the full dose), then I would be unlikely to. So hoorah!

I also learned from the rheumatology nurse that echinacea is not recommended for people with auto-immune disorders, and she advised against taking it. It’s a herbal remedy used to strengthen the immune system and I usually take it at the first sign of a cold or virus, particularly during the winter. I guess that the reason is that if it works, it may provoke a flare up or something. I hadn’t particularly noticed whether it did or not, as actually when I am ill, I often am flare free (body’s too busy fighting virus to fight itself?). It’s worth knowing though, so I will see how I go this winter without taking it.

If that’s the advice, then it must mean that someone somewhere believes that echinacea DOES work to strengthen the immune system, so perhaps that’s good to know for everyone without an auto-immune condition!

 

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.

Arthritis is not just a physical condition

I haven’t blogged since December 2014! How did that happen?!

Mostly, it’s because I’ve been too busy, rather than too ill. I’ve been loving my work at Manchester Mind, though it does keep me pretty occupied and sometimes a bit stressed too. However, the fatigue and flares have been manageable, and I’ve not had to take any time off because of my arthritis so far. I’ve continued to stick to the gluten free diet, though I’m finding staying off the sugar slightly harder to stick to these days. Overall, however, I think I’m doing okay.

I’ve even managed to start trying vigorous and athletic styles of yoga and been shocked and amazed by what my body is actually able to do. I’m building up my upper body strength and even managed a headstand unaided at last week’s class.

So overall, life with PR is pretty positive at the moment.

But what I did want to write a bit about is a new development in my work which I’m pretty excited about.

Living with palindromic rheumatism – or any type of chronic condition – isn’t just as simple as living with the physical symptoms. The flares, the pain, the restrictions and the fatigue also have a psychological and emotional impact and this isn’t often taken as seriously by medical professionals. When the consultant asks how I am, he is interested in how bad my flares are, and whether there’s any joint damage. He’s not generally asking how I am coping with my PR. Coping with the unpredictability, with the chronic pain, the lack of sleep, and the fatigue isn’t always that easy. I think that sometimes the psychological and emotional impact of the condition can be even harder to deal with than just the physical symptoms. A friend with rheumatoid arthritis told me that she wished she was told when she was diagnosed that it wasn’t just a physical illness she had, but a mental illness too, its psychological impact has been so profound at times.

More than once, I’ve phoned the rheumatology nurse, or Arthritis Care Helpline  in tears. It might have been after a disastrous appointment with a consultant who hasn’t taken my symptoms seriously or just during a long flare when I’m at the end of my tether from lack of sleep and constant pain. The early days were particularly stressful and upsetting – when I didn’t know what I had, what to do about it, or what was going to happen to me. I didn’t have any coping skills, and it felt as though no one really ‘got’ what I was going through. It took 8 years before I was even referred to a pain management clinic – by which point I’d already learned the most useful tool I was ever going to learn – meditation and mindfulness.

Life can be stressful enough without a chronic condition, but throw in an unpredictable and little understood invisible illness which causes chronic pain, disability and fatigue, and stress increases massively. I can point to plenty of different stressors. There’s the frustration of not having any effective pain relief when I’m flaring. The stress of the pain and lack of sleep. The disappointment and frustration of having to cancel on friends, or having to take to bed from fatigue. Even people trying to help by offering ‘helpful’ suggestions or commenting “but you don’t look ill” can be a frustration and a stress. There’s also the stress of the financial cost of living with a long-term illness, and in the current economic climate with a whole raft of disability benefits being cut, this is a huge stress for a lot of people.

In the early days, I was often very low, worrying about the future or giving up on certain dreams. Sometimes I still spend a lot of time just wishing I didn’t have this stupid darn condition. Of course, wishing things were different uses up and wastes a lot of energy, and it’s something that happens much less since I discovered mindfulness. But it’s still something that I have to revisit time and time again and work on – the transition from resistance to acceptance. After all, why wouldn’t you wish you didn’t have a lifelong condition that probably wasn’t going to be cured?

One thing that’s been really rewarding for me over the past year is my job for Manchester Mind, which is running a ‘resilience’ course for people with diabetes or heart disease. The course teaches people cognitive behavioural and positive psychology techniques and introduces meditation and relaxation and stress management techniques too. It has really helped some people and I’m really excited because now we’re going to be offering the course to people with arthritis too.

I think this is hugely important. We don’t get taught these skills at school, and unless we are referred to a therapist or counsellor by our GPs, or gone of our own accord (not always affordable for many people), we don’t learn them as adults either. We don’t get taught the importance of relaxing and of deep breathing, and we don’t learn that we don’t have to believe the negative self-talk that can often drag us down into a pit of depression. We don’t learn that accepting pain and illness can be more beneficial to our mental health than trying to resist it. (This doesn’t mean giving up – a longer post is needed to explain this more fully!)

Teaching people these techniques and seeing them learn from each other, and integrate relaxation and meditation into their lives hasn’t just helped them cope with their conditions – it’s helped me with mine. And it’s not a case of such courses or techniques only appealing to a certain, narrow age range. The youngest person I’ve had on the course so far, is 20, the oldest 89. They’ve pretty much all said that they’ve learned something and it’s helped them in one way or another.logo

Thanks to some additional support from Arthritis Research UK, from July Birmingham Mind, and Manchester Mind will be extending the Building a Healthy Future course to anyone with arthritis. It’s completely free. It won’t make your pain or your fatigue disappear, but it will help you cope with all the extra mind stuff that comes along with a diagnosis of arthritis.I’m so happy to be involved and know that my work can help people with diabetes, heart disease and now arthritis too.

2014 – a Summary

It’s the penultimate day of 2014, which seems as good a day as any to look back over 2014.

I’ve been using the Rheumatrack App on my phone since October 2013, which means that, for the first time ever, I can look back on the year and have a realistic idea of how much PR has affected me.

The good thing about using an app like this is that you can export all the data – within a specified time frame – as a file, so it means I can get a good overview and even do a little bit of analysis.

On the app, I record my pain on a scale of 0 – 100. I also record where in the body I’m in pain and sometimes I add notes too. Most days, I enter the data in the early evening, but sometimes, if the pain changes (dramatically increases or decreases) there will be multiple entries on the same day.  I record something even if there is so flaring at all.

The year in Numbers

So, time for some geekery as I look at 2014 in numbers. There were 355 entries in total.

  • 173 records out of 355 were COMPLETELY PAIN FREE! That’s almost half!  (48%). I’m pretty sure that is higher than it would have been in previous years.
  • 89 of the records were values of 30 or less. That means that for a quarter of the time, I am not in much pain at all.

Adding them both up, this means, that ¾ of the time, I’ve been in no or neglible pain. I’d say that was a pretty good result.

  • I had NO flare ups where the pain was higher than 85 (it’s at about 80 and above that I am crying in pain and can’t really function well at all) and only 24 days where the pain was higher than 65/100. this is only 6% of the time.
  • Which leaves 21% of the time – (1/5th) I was in some sort of uncomfortable pain, but could still function.

I had the longest run of pain in the early part of the year while there was a lot of stress going on in the house due to building work: 42 entries over February 14th til the 25th March. I had a long run again in the summer – 27 entries 19th July – 14th August. I wasn’t particularly stressed and can’t pinpoint anything to that particular run.

I had quite a few nice spells with no pain at all, with the longest being 17 completely pain free days in a row in May (4th til 22nd). This was also during and straight after my detox retreat in Spain. This may or may not be a coincidence.

Where do you flare?

Most of the flares in the early part of the year were persistent in my elbow and shoulder. Most common areas for flares continue to be somewhere on the hand – wrist, base of the thumb, or any of the finger joints. My toes are rarely afflicted, but they have flared once or twice. I had a jaw flare twice. My knees have been troubling me off and on, but it seems that this may be down to tendonitis. I’m waiting for a physio appointment to assess this further

What I have not recorded in the app much is my fatigue or energy levels. I have three days of note where I was completely incapacited with fatigue.

Diet stuff

Overall, I do feel healthier at the moment, despite flaring from time to time. My energy seems more manageable, my mood more stable and my ability to cope with my PR much higher than it has ever been. I’ve been gluten-free since April and have been sticking to a fairly ‘clean’ alkaline type diet about 80% of the time. I notice that when I eat more sugary things, my mood and energy levels are both affected. I’m pretty committed to this new way of eating – which is just a stricter and healthier version of the mostly vegetarian diet I had already been following. But now, I eat less dairy, no gluten, and cook a lot more from scratch than ever before.

What about exercise?

I have done very very well when it comes to exercise this past year. I have definitely found that a daily morning yoga practice with my energy levels, as well as alleviating the morning muscular aches and pains I have, possibly from the fibromyalgia. I did an amazing fitness bootcamp in March and completely surprised myself with what my body could handle. And I have continued to fit in various exercise classes into my working week. In May, I got a new job working for Manchester Mind, and I enjoy it a lot. What’s also great is that I am able to fit in my lifestyle around it – continuing with my twice weekly zumba classes and working my hours over 3 days instead of 2 1/2. As part of the job, I had to visit a lot of people around Manchester and so over the summer, cycled about 70 miles a month JUST FOR WORK!  I also did a 26- mile sponsored cycle ride and raised over £400 for Refugee Action.

Since I decided to prioritise my yoga practice first thing, my meditation practice has taken a bit of a back seat. There isn’t enough time to fit in both yoga and meditation every day in the morning, so in the days when I’ve not been able to do both, I tend to meditate right before sleeping.

Looking after my Mind is important too

During 2014, I also learned to lead others in meditation on the Breathworks course learning to teach Mindfulness for Health. I felt hugely self-conscious the first time I led a meditation. Previously I’d just read it off a script or played something on the Ipad when I’d led meditations before. I still feel a little self-conscious, but I’m getting more confident simultaneously meditating and leading. I also got such great feedback on the last course I ran (I run 6-week long stress management and emotional wellbeing courses for people with diabetes and heart disease) that my confidence has really been boosted in that area. My meditation practice has really been life changing and it really does help me cope when things are tough.

Looking ahead

I’ve got a bunch of goals and hopes for 2015, but my main one is to continue with everything I’ve been doing that helps my health – so that means sticking with the alkaline diet, keeping exercising and doing yoga as well as meditating too. I have two yoga retreats booked – a weekend one in March, and a week-long retreat in Morocco in May, which I’m very much looking forward to.

Of course, one of my hopes is that there will be many pain-free days ahead, and fewer ones full of pain, but at the end of the day, that is something that I’m not completely in control of. I really hope that sticking with my healthy lifestyle over a long period of time might mean fewer and fewer flares. I can live in hope. But I also know that my healthy lifestyle helps me cope better with pain and fatigue so even if it doesn’t ‘cure’ me, it certainly helps me live better and be happier.

Happy 2015! Thank you for reading.