Superhero Walk

Regent’s Park yesterday was filled with over a thousand people running and walking 5km to fundraise for loads of different charities. I took part to raise money for Arthritis Research UK. Quite simply, without clinical research, I wouldn’t be on a biologic drug (Enbrel) that is starting to make a difference to my joints. From the start I knew that I’d walk, rather than run, the five kilometres. It was a baking hot day (25 degrees Celsius) but more importantly, my body isn’t up to running as I’m not in remission (yet).

Everyone taking part was entitled to a free Superhero costume such as Superman or Wonderwoman. You could either turn up and collect a costume on the day or make your own. I dressed as an old-fashioned Superhero – namely a Suffragette, complete with a white, green and purple sash, a hat adorned with ribbon, and a double-sided placard proclaiming ‘Votes for Women’ on one side and ‘Arthritis Research UK’ on the other.

As I’ve been doing regular training walks for the past three months (and the Enbrel is kicking in now), I managed the route in about 45 minutes. I deliberately walked quickly (despite having very painful hips and knees), partly due to the heat, but also because I wanted to complete the course in less than an hour. Along the route, I chatted to several typical ‘Superheroes’ who recognised my outfit. One excitable 10 year old boy shouted out, ‘You’re a Suffragette!’ Don’t get run over by a carriage’, which made me smile. Lots of people beamed in my direction and wanted photos, but there was nothing unusual about that as lots of us had snaps taken. Even though it was an exhausting walk and tough on my hips and knees it was an exhilarating feeling to cross the finish line. Apart from fundraising for Arthritis Research UK and raising awareness of rheumatoid arthritis/disease, the walk was about setting a challenge for myself and achieving it. Now it’s time to think of a new challenge!

Advertisements

Extreme fatigue

Fatigue can creep up on me when I’m least expecting it. When I feel I have enough energy to do a certain number of activities in one day (lots of planning involved so I don’t do too much), it can come along and just wipe me out. There’s no way of knowing how long it will stick around for either. Physical exhaustion is only half of it – the kind of tiredness where your whole body feels heavy and every step is a mammoth, painful effort. The emotional and mental side is equally tough. ‘Brain fog’ descends and it can be hard to concentrate, with simple tasks demanding more effort than usual.

Doing gentle exercise (walking) to reduce fatigue might seem counter-productive, but it has helped to strengthen my muscles and to improve my energy levels. Muscle wastage on my arms and legs has contributed to my fatigue so I’m tackling that through a combination of physiotherapy and walking. Pacing myself is easier said than done, but I am getting better at judging how much I can do each day. If it means resting during the day so that I can go out in the evening, that’s what I do. Better than going all-out one day, leading to sheer exhaustion and inability to get things done the next day. Although chronic fatigue is ever-present due to rheumatoid arthritis and Ehlers-Danlos Syndrome, rather than waiting for it to envelop me I am trying to minimise its impact as much as possible. Here’s how: gentle exercise, a healthier diet, plenty of sleep, planned (and fewer) activities, pain relief when it gets really bad, mindfulness to deal with stress, and saying no to things rather than overdoing it. Saying ‘no’ to things is the hardest part. It means I still go out with friends but maybe for a shorter time, allowing me to do more the next day rather than feel totally zonked out and not up to doing anything. Fatigue won’t stop me from achieving things: it may take me longer to get there but often the journey is just as important as the destination.

Self-injecting success

Featured

Not long ago, self-injecting Enbrel was out of the question. I was traumatised by previous bad experiences on four other drugs, including hallucinations and broncho-spasms. 18 months after that night, I finally self-injected today! I’ve been building up to this for some time, as this was the 12th dose, and I started the medication at the end of January. To begin with, my specialist nurse administered the drug. Then, over several weeks, I learnt to remove the grey lid (a tricky manoeuvre with swollen fingers!), push out the air bubble, and inject my thigh at a 45 degree angle. Today was the first time that I’d managed to do the whole procedure – even pushing the plunger and removing the syringe. It wasn’t as bad as I thought it would be! It stung a bit, but not massively. I’ve celebrated by having a bar of chocolate (as I don’t drink anymore since being on anti-TNF drugs). I feel an amazing sense of achievement as well as relief. I’ll probably self-inject in front of the nurse for a bit longer before I do it at home. This feels like a real milestone and I look forward to it getting easier with practice.

I’ve also signed up for the Super Hero 5km Run on Sunday 18th Mary at Regent’s Park London (except in my case it will be a walk, raising funds for Arthritis Research UK. Why AR UK? Because they do vital work to find new treatments to tackle rheumatoid (and osteo) arthritis. Without their research, I wouldn’t be on a biologic drug (Enbrel) that will (hopefully) a) give me a better quality of life, with less fatigue, joint stiffness and swelling and b) lead to drug-induced remission. Without them, I wouldn’t have access to valuable information about RA (both the condition and full range of treatments available), helping to demystify everything.

Why the Super Hero Run? (or as I’ll do, walk). I originally wanted to do the Santa 5km Run/Walk in December, but didn’t go ahead for various reasons (the cold, dark weather combined with a flare). Having (temporarily) given up the ukulele, I was looking for a new challenge. I realise that in some ways it’s not a great idea to subject my joints to this kind of physical endurance test but I wanted to give something back. I couldn’t have asked for a better rheumatology nurse and consultant and would be lost without them. Apart from raising money for arthritis research, I’d like to highlight that people of all ages have RA. And wearing the Super Hero costume should bring an element of fun to the whole event. I’ve invested in a pedometer that tells me the distance I’ve walked each day. So far today (bearing in mind it’s only 15.20pm) I’ve only walked 3600 steps or 0.57 miles. That’s a long way from the target. Still, there are 8 and a half weeks to go so plenty of time to reach 5km in one day. If I seem relaxed about this, it’s because it’s not a competition, it’s about seeing what I can achieve, despite having erosive RA that isn’t under control yet. No matter how long it takes, I’m determined to reach that finish line!

I’m possible, not impossible

‘Realistic goals’ is an expression you hear a lot when you have rheumatoid arthritis. If you are used to being super active every day it takes a bit of readjusting to the idea that you can keep active, but not as much as before. Articles on walking for fitness often cite the figure of 10,000 steps a day as the ideal for an average adult. But let’s face it, how many people actually a) wear a pedometer to keep track of their activity or b) even manage to reach this figure? It’s more helpful to think about time and quality of movement rather than the number of exercises you perform.

Yesterday I attended a session on ‘Exercise and Rheumatoid Arthritis’ which was fascinating. Even though I knew the reasons why it was such a good thing, it was valuable to be reminded that it’s not just about easing joint stiffness and improving the range of motion in a joint, but also about keeping your heart healthy and maintaining bone density.

Another useful reminder was thinking about the different exercise types: stretching, strengthening, fitness and balancing. Out of all of these, apparently there is less evidence around balancing as being beneficial for people with RA, but it’s still worth doing. With stretching, the key is to stretch ‘to the point of muscle fatigue’, starting slowly with a 5 second stretch and gradually building up to a 30 second stretch 3 times a week. Easier said than done, as I have definitely over-stretched in the past and regretted it later on! The physio suggested Nordic walking, which sounds intriguing, where you walk with special poles (a bit like ski poles). Definitely something I’m considering.

Strengthening can be as simple as bending the arm and lifting it up, starting without a weight initially, then moving on to do the exercise with a small weight (such as a filled water bottle). Or lifting the legs one at a time while sitting down.

When it comes to balancing, writing your name in the air with your hand or leg seems a fun activity to do – I haven’t tried it yet but planning to do so this evening! Fitness is an interesting one because I used to run every day for an hour but at the moment that just isn’t possible (swollen knees, painful hips etc). The key is to make yourself a little breathless so that you can still talk to someone for 5 minutes. I think walking up stairs or walking fast is a good way to do this as it’s a low-impact activity on the joints. Doing 30 minutes of physical activity 5 times a week may not seem achievable at first, but when you break it down into 5 minutes climbing the stairs, swimming, or walking 5 minutes down the road, it soon adds up.

Although it’s obvious, it was useful to be reminded to cut down the level of exercise if I’ve overdone it, and to take a day off if my joints are swollen or painful. Not forgetting non-slip, shock absorbent footwear – often stylish these days as well as practical.

I left the hospital feeling motivated to stick with the current exercise plan and to consider trying other options (Nordic walking is at the top of the list). A few days ago, I came across an apt description for the way I’m feeling now, which ties in brilliantly with what I learnt in this session – the slogan ‘I’m possible, not impossible’.

Free running

At an event tonight I watched guys from the Airborn Academy of Parkour doing free running tricks, flips and twists. It was absolutely mesmerising to watch. I’ve no idea how many hours of practice they put into it but they are real experts at what they do. I also learnt the difference between the two: apparently parkour is about getting from A to B as efficiently as possible, jumping over railings, swinging from one part of a a building to another etc; whereas free running involves still getting from A to B but taking more time, incorporating your own tricks, flips and twists. A backwards flip from a standing position?  No problem. Forget the one-handed cartwheel, what about the no-handed cartwheel? Easy. It was a seriously impressive display and got me thinking again about what people are capable of and how much the mind comes into it. When you have rheumatoid arthritis, it’s easy to start thinking about what you can’t do physically. But what about banning the phrase ‘I can’t’ and thinking what you can actually do. I’d definitely like to do more – not trying to be superhuman like these guys – but their stunts have motivated me to get more active and start aiming towards a tangible goal. I may not ever be physically up to running a marathon or leaping across town doing parkour, but I could certainly aim for a 5k walk.