Shopping with a foot fracture

A shop assistant opened the curtain while I was trying on some trousers, without saying “Excuse me” or ‘Is anyone in there?”. I had left a shopping basket outside the curtain so it was a bit surprising she ignored it. When leaving the changing room, she said: “Sorry, but I didn’t see a wheelchair.” This was a strange thing to say because her colleague had indicated I could use the accessible changing room due to wearing an AirCast boot and being on crutches.

If I didn’t have a foot fracture I wouldn’t use the accessible changing room but I felt I needed to explain why I accepted her colleague’s offer to use it. I tried explaining that there are many kinds of disability, that I fractured my foot and have rheumatoid arthritis and osteoporosis, but didn’t elaborate. It would have been better if she had just apologised rather than referring to the lack of a wheelchair outside the changing room curtain.

Happily, most of my other experiences shopping on crutches have been good ones. People have offered to carry shopping for me around different stores, open doors, help pack bags etc. However, lots of shops still don’t have an accessible entrance, which is actually illegal under the Equality Act 2010, and public transport has a long way to go to get it right. Apart from the one incident, people have been really attentive and helpful, treating me like any other customer. For example, visiting a stately house with a huge garden recently I was able to borrow a wheelchair, and staff pointed out the accessible routes. As 1 in 5 people in the UK have a disability, I think shops and tourist attractions should make more of an effort to be accessible and the behaviour of their staff is just as important – i.e. everyone receives the same standard of service – otherwise people will just take their custom elsewhere.

Advertisements

Stopping Enbrel again

Since early December, I’ve hardly injected Enbrel. First I had a chest injection, followed by two weeks of antibiotics. Then my neutrophils stayed consistently low, so I’m in a state of limbo, unable to inject. I’m having weekly blood tests until they return to normal. It’s been particularly frustrating as I was full of optimism about restarting injections after treating the chest infection. Enbrel is the only rheumatoid arthritis drug I’ve tried that’s had any kind of beneficial effect. Plus it’s stabilised my bone erosions, reduced inflammation and swellling, and given me more energy. Essentially, it was starting to give me my life back. I had exciting plans for the start of 2015 that I’ve had to put on hold for a while.

To try and exercise some control over the situation – although I don’t know how likely it is to make a difference – I’ve tried to make some dietary changes such as introducing meat into my diet again and eating even more vegetables than before. Crucially, I’m trying to get 8 hours’ sleep a night as I’ve been sleep deprived over the past two months. Being off Enbrel has reminded me how effective it is because without it my joints are swollen and stiff, it’s hard to get out of a chair and walk, and I’m the most exhausted I’ve been for weeks. I’m distracting myself from the weekly blood results by reading, listening to music and seeing friends. Hopefully waiting for my neutrophils to return to ‘normal’ will be over soon so I can get back to injecting Enbrel.

Advice for health professionals

No-one wants to feel as if they’re on a conveyer belt of patients. A number rather than an individual. Over the years, since my first operation aged 5, 99% of the health professionals I’ve met have been caring and focused on the highest standards of patient care. In several situations, this hasn’t been the case.

Attending appointments can be nerve-wracking. Lying on a bed, either in Accident & Emergency or as an in-patient, is stressful. Here are 6 ways health professionals can improve the patient experience.

1. Always introduce yourself by name and job title if it’s the first time you’re meeting the patient. This is especially important in A & E. If your patient is having an allergic reaction or severe side effects to medication, they’ll feel disorientated and scared. Simply introducing yourself makes a big difference to calm nerves and inspires confidence in your ability to deliver the right treatment.

2. Don’t stand at the end of your patient’s bed and discuss their health as if they’re not there. Unfortunately I’ve come across this practice on more than one occasion. It’s rude and upsetting, whether the patient understands what you’re saying or not.

3. Examine your patient. This sounds obvious but in rare cases I’ve met doctors who’ve taken a medical history but not bothered to perform an actual examination or any tests. I know that health professionals are under enormous time-pressure, particularly in the NHS. However, doing this would a) give a fuller picture of symptoms and b) help monitor progress of the patient’s condition.

4. Remember your patient knows their own body better than you do. If they are coming back time and again regarding the same issue, there’s a good chance that there’s an underlying medical problem. For example, I made five visits to my doctor before being referred for a chest CT and having bronchiectasis diagnosed. Another time, I was convinced something was up with my ribs. Sure enough, several visits to the GP and an ultrasound later, it turned out that I had two tears in a rib on the left-hand side.

5. Always explain what’s happening, why, and how long drugs should be taken (even those that need to be taken ‘for life’). This is crucial and applies whether in an A & E, in-patient or appointment context. Two years ago, while having a severe allergic reaction to rheumatoid disease medication (broncho-spasms and hallucinations), I was left alone in an A & E cubicle, terrified. I thought I was dying. Looking back, if someone had explained that I was having a reaction to the drugs, and that they just had to work their way out of my system, things would have been much better.

6. Use plain English rather than complicated medical terms. So instead of ‘intra-articular injection’, say ‘steroid injection into the joint’. It sounds obvious, but not enough health professionals do it. This makes it much easier for the patient to understand the options available to them, and enables them to make an informed choice. How can patients agree to a procedure or course of treatment when they don’t fully understand what’s involved?

Luckily, most of the time I feel like an individual, rather than a number, when in hospital or visiting the doctor. I’m aware that as a patient I can make the experience easier too – by listening carefully and asking lots of questions to get informed about my treatment. It should be a partnership between patient and consultant. At the same time, is it too much to ask that one day I, and all other patients, will experience brilliant patient care 100% of the time?

Rheumatoid Arthritis Awareness Week #LookDeeper #RAAW14

Featured

I was one of 1,954 people with Rheumatoid Arthritis who completed National Rheumatoid Arthritis Society’s survey on the impact of chronic fatigue for those living with RA. Although I mainly use the term ‘Rheumatoid Disease’ now rather than ‘Rheumatoid Arthritis’, in this context I’ll use RA. It’s no surprise that 83% of survey respondents ‘felt that the public is not at all aware of the impact that chronic fatigue has on people’s lives’. I think the general public get confused between RA and Osteoarthritis (OA) and find it hard to understand the full implications of living with an invisible illness. I think this is partly due to how the media covers rheumatoid arthritis and because fewer people have RA than OA. (According to Arthritis Research UK, 8.75 million people (in the UK) have sought treatment for osteoarthritis). In contrast, according to NRAS, around 690,000 people in the UK have RA. Although it can strike at any time, it most commonly affects those in the 40-60 age bracket, and nearly 3 times as many women as men.

Four out of five people with RA answering the NRAS survey said that their healthcare professional has never tried to measure their level of fatigue, and 50% of people stopped working within six years. Things have to change. I think healthcare professionals and employers should treat fatigue as seriously as other symptoms like pain. All healthcare professionals should integrate measuring fatigue amongst RA patients into their overall approach to managing the disease, and employers should make reasonable adjustments in line with the Equality Act to ensure that employees with RA have flexible working conditions and are not discriminated against.

This is why Rheumatoid Arthritis Awareness Week is so important: awareness leads to understanding and action that will make things easier for everyone who has RA. Friends will understand that chronic fatigue means people with RA might go out for a short time rather than staying out late. Employers will be quicker to offer more flexible working arrangements to accommodate employees’ need for treatments and pacing their work day (rather than the person with RA having to broach the topic first).

degenerative joint disease or wear and tear.According to NRAS, around 690,000 people in the UK have RA. Although it can strike at any time, it most commonly affects those in the 40-60 age bracket, and nearly 3 times as many women as men.

For anyone new to RA, it is a chronic, systemic autoimmune disease that attacks the joints and can cause irreversible damage which can lead to disability. Symptoms include joint stiffness, swelling, extreme pain and chronic fatigue. Simple tasks that people without RA take for granted such as boiling the kettle and opening a jar can become painful and difficult. In some cases (but not all), RA can affect organs such as the heart, lungs and eyes. Here are some facts about my invisible illness, although I now self-inject twice weekly as well as take pills.

Although there’s currently no cure for RA, a number of drugs help to slow the progression of the disease and reduce pain, swelling and stiffness. Drug-induced remission is a real possibility. Treatment includes conventional disease-modifying anti-rheumatic drugs (DMARDs) including Methotrexate and the newer biological therapies (biologics) which are given to people for whom conventional DMARDs are ineffective or who have had side-effects from them. Like many people, I tried quite a few drugs before starting the biologic Enbrel which is starting to work, reducing inflammation and stabilising my bone erosions. My chronic fatigue remains though, which is why it’s crucial that people without RA look deeper to understand this hidden aspect of the condition which can be just as disabling (or even more so) than joint pain, stiffness and swelling.

Being teetotal

Ordering fruit juice at a bar always elicits curiosity. If I’m with a new group of people, one of their first questions is: ‘What are you drinking?’. There’s often an assumption that everyone drinks alcohol. If you’re not drinking, people want to know why. Friends know I don’t drink as it doesn’t mix well with my medication (Enbrel injections for rheumatoid disease and Actonel tablets for osteoporosis). But should I tell people I haven’t known long the reason why I’m alcohol-free? It shouldn’t be an issue. Lots of people (without chronic illness) abstain from drink for health reasons or because they’re into sport. Others might have addictive personalities and stay off booze. That’s their decision. I don’t judge others for drinking alcohol or not but I’ve noticed that some drinkers (not my friends) find it hard to have a ‘teetotaller’ in their presence. They crack jokes about ‘Needing to watch their intake’ and so on. I’ve explained that I don’t miss it and if I want a great substitute, I know an amazing alcohol-free wine that tastes and looks like the real thing.

Taking my reason for staying sober out of the equation, I feel much better without it. RA/RD and Ehlers-Danlos Syndrome make me feel tired enough already without adding hangovers into the mix! Being teetotal doesn’t mean you have to stop socialising. However, not drinking means more time to explore other activities that don’t revolve around a pub!

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!

Good news

My rheumatologist did an ultrasound scan on my hands and wrists today. I was really worried about this procedure, as it’s been a whole year since the last scan and it feels (physically, at least) as if my body has gone downhill because of rheumatoid disease. Unexpectedly, inflammation levels have decreased markedly and the bone erosions seem to have stabilised. She’s going to prepare a detailed report but objectively, from what flashed up on the monitor, there has been an improvement in my joints.

So why did I get teary when I saw this? Because the results on the screen don’t match how I feel. Don’t get me wrong, I’m over the moon that Enbrel seems to have slowed down the disease. It’s just that it doesn’t make sense that the results show an improvement on last year, and yet I feel worse. My shoulders, elbows, knees and hips all ache continuously whereas last year it was confined to my knees and hips. Energy levels are still zero and my limbs feel heavy, almost as if they’re being held down by weights when I try to get up or move around. An added complication is that I already had Ehlers-Danlos Syndrome (Hypermobility) when I was diagnosed with RD/RA four years ago. My rheumatologist said that it looked like EDS could be affecting me more than RD/RA at the moment. I’m not totally convinced but nowadays it is virtually impossible for me to separate EDS symptoms from those of RD/RA.

The next step is an MRI on my hips which will give a fuller picture. I’m going to continue with the Enbrel (twice weekly injections), Vitamin D (1,000 International Units daily) and Risedronate Sodium/Actonel for osteoporosis (once weekly) for now, and will have another ultrasound scan in 6 months’ time. I’m feeling cautiously optimistic about the future. I recognise that I’m impatient to reach drug-induced remission. I need to be realistic and acknowledge that managing my RD/RA effectively may be the best I’ll get, but that won’t stop me being optimistic about getting to remission. I’m happy that I seem to be getting better and would like the chronic pain, fatigue and brain fog to lift magically. That’s what I thought would happen with the Enbrel, as I know it has with other people. Having said that, comparing myself to myself (rather than others) is essential, because RD/RA affects individuals so differently. Enbrel is making a difference slowly, so it’s time to celebrate this good news and keep moving forward.