Category Archives: Living with Arthritis

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.

 

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.