Tag Archives: fatigue

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.

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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.

 

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.

Remembering to be mindful

The tendinitis that I’ve been suffering since the New Year had really set me back emotionally and physically. As well as being in pain pretty much constantly, it was also affecting the quality of my sleep. This meant that I spent daytimes feeling really low on energy and consequently low emotionally as well. Last week, I was away with my partner and noticed that a great deal of my conversation with him was dominated by me simply saying “I’m really tired”, and also “I’m so fed up of feeling tired all the time”. He reminded me that I had not meditated regularly for quite a while and that this probably meant that I was coping less well than usual.

When I thought about things, I realised that I am mostly pretty good at dealing with sporadic pain and the unpredictable aspect of my pain and fatigue. I rarely spend too much mental energy worrying about where it’s going to turn up next, or how long flares will last for. I never spend any time worrying that I’ll get worse. This is a big change from how I was when I was first diagnosed with palindromic rheumatism.

Yet the pretty much constant pain of the tendinitis and fatigue was somehow harder to deal with. It had started to grind me down physically, and that was feeding into how I was feeling and thinking. So, I decided to kickstart my mindfulness and meditation practice by reading a book that had been on my shelf for a while: Mindfulness, A Practical Guide to Finding Peace in a Frantic World by Mark Williams and Danny Penman. I also decided to try and follow the program in the book.

My first introduction to mindfulness and mindfulness based cognitive therapy was on a wonderful course for people living with a long-term condition led by Breathworks.  It really helped me accept the realities of my condition, and gave me some really useful tools for coping, not just with my arthritis but with life in general. So my own experience of mindfulness has already been a positive one. However, my meditation practice – the foundation of mindfulness – has been somewhat sporadic. Sometimes I meditate daily, sometimes even twice a day. Other times I can go days or even weeks without prioritising meditation. Even though I’m getting practised at mindfulness itself, it’s not enough on its own if you don’t meditate.

So I read the first few chapters of the book to try and inspire me to prioritise my meditation again. One of the premises of MBCT (mindfulness based cognitive therapy) is that not only can our thoughts drive our emotions, but it can work the other way as well. In my case, my low energy and tiredness was feeding into my thoughts and instead of just accepting those feelings, my mind fed off these negative and low emotions, exacerbating things and making me feel even lower.  My mind was stuck, focusing only on the pain and tiredness and not on anything else that was going on externally or internally. It was like a broken record.

Most key for me to remember, was that my mind was becoming really focused on wishing things were different. My internal narrative was basically on a loop constantly saying “I wish I had more energy”, I wish I wasn’t so tired”. It wasn’t even the pain that was the main issue. It was the fatigue and tiredness. Instead of accepting the pain and fatigue for what they were, my mind was occupied with wishing it was different. In the book, it says that focusing on the gap between “how you feel and how you want to feel” highlights that gap, and this doesn’t help things, it only makes it worse. The trouble was, just wishing my pain and tiredness away wasn’t going make them go away. And it wasn’t as if I wasn’t doing things to help myself. I was. The only thing I wasn’t doing was accepting or meditating.

Once I realised how much energy I had been spending on wishing I had more energy, and wishing it was different, the clouds lifted. Since I’ve stopped wishing things were different and accepting them as they were I actually started to feel better. I’m still tired, but I’m saving energy by not focusing on wishing I had more energy – if that makes any sense!  I’ve managed to meditate almost daily since starting the program.

The funny thing is, I know I feel better after a yoga nidra meditation – a deep relaxing meditation. And I know that regular meditation does help. And it’s not just me that thinks that. Research studies all over the world are showing how beneficial mindfulness meditation can be. Yet, I don’t always do the things that are good for me or that will help me feel better. Thanks to mindfulness, I’m not going to beat myself up over it or spend too much time on dwelling on why this is. After all, I’m human, and I’m not the only one who forgets to do the things that are good for her!  I’m just going to keep on keeping on with my practice, and to really try and meditate as often as I can (which means timetabling it in and prioritising it).

I’m also going to remember that the key to this recent shift is that spending time on wishing things are different to how they are, especially when it’s about something that you cannot change, is a waste of mental and physical energy.

thankfully, I can also report that the tendonitis is healing – slowly.  The pain is much less, and I am sleeping better.

Some meditation resources that I’ve found useful include:

  • Headspace offers a great introduction to mindfulness meditation in its free “Take 10” programme which includes ten, ten minute meditations. I paid for the full year’s programme on an app and have progressed through quite a few of the daily programmes and found them really excellent.
  • Meditation apps from Oasis: There are a few different free and paid-for apps.
  • Insight Timer app: Basically just a meditation timer for people who don’t need much leading with their meditations.
  • Breathworks: Offers CDs, books and courses (online and throughout the country) on mindfulness. Especially relevant for people with chronic illness.
  • Everyday Mindfulness: Blog and forum for people using mindfuless

Daunted by new drug regime

I saw my consultant two weeks ago and he decided to follow the pain management clinic’s advice, which is to recommend that I try taking a drug called Gabapentin instead of moving onto Methotrexate. Gabapentin is not a ‘disease modifier’ drug, but one which is supposed to specifically target the pain and flare ups (rather than the causes of them). Right after seeing the consultant, I came down with a virus so I wanted to wait til I was completely over it before starting on a new drug regime.

So, today is day 1 of taking Gabapentin. As always, when I am taking new drugs, I’m pretty nervous about the potential side effects. As ever, I’ve made the mistake of reading the list on the leaflet. Feeling drowsy and tired are the most common – as if I need drugs to make me feel any more tired! Other side effects include anger towards others, confusion, mood changes, depression, anxiety, nervousness and difficulty with thinking.  Hmmmm. Not particularly appealing given my history of depression. Joint pains are another ‘common’ side effect to look for!

What if I’m one of the unlucky few who get these side effects? Does that’ll mean I have those symptoms TWICE as much as before?!

I have to gradually build up the dose of this drug, so I think it’ll take about a week to know if I’m getting any side effects, perhaps a little longer. I’ve have had a few flare ups in the last couple of weeks, so I guess if I’m pain free for a while, then it might be working – but we still have the usual “is it working or is it just a mild period” question.  I am also enlisting the help of my boyfriend so that he can judge whether I’m any more dopey and fatigued than usual!

On another tack, I discovered that the NHS is now no longer approving prescriptions of three months at a time. Which means that I have to get a new prescription for my hydroxychloraquine every two months instead of three (and this drug too, if it works). Which therefore means that having Palindromic Rheumatism just got more expensive.