Her mouth gaped open. “But you’re too young to have osteoporosis, aren’t you?” We were sitting at the bus stop and a fellow passenger had asked what happened to my leg. Just nine months after my last foot fracture, I have broken the same toe (but luckily in a different place).
Since people are naturally curious, I don’t mind explaining that I’ve fractured a toe. They normally look incredulous that a broken toe joint means wearing a huge AirCast boot all the way up the knee. That’s when, depending on my energy levels, I explain that I have osteoporosis. If they ask more questions, I’ll tell them about the rheumatoid arthritis and Ehlers-Danlos Syndrome too. But sometimes, as I found before, it’s exhausting running through the same story time and again, so I’ll say “It’s a long story.” There are two reasons people look amazed – firstly, the notion that osteoporosis only affects older people, and secondly, that it’s possible to sustain a fracture without having an accident.
A few days ago I went to a support group for people with osteoporosis. We had a very good session on mindfulness. I found the practical guided exercise useful – being in the present moment, becoming more alert to things and stepping out of negative thoughts (about my body, pain levels etc). I liked the idea that ‘thoughts are like clouds; you are the blue sky and the clouds are going past’ – it is a great way to cultivate more positive feelings about a situation. Most of all, mindfulness is about experiencing the current time, not reminiscing about the past or planning the future. I’ve used these techniques before but it is much easier with a group. The challenge is to incorporate the practice into each day and to start to feel more in control of the situation (i.e. the foot fracture) than I did before.
What a month! Number of medical appointments: 13, not including blood tests. Seeing specialists covering osteoporosis, rheumatology, dentistry, urology, podiatry, chest physiotherapy. Not forgetting fracture clinic and the GP. No wonder some people have asked if I work at the hospital! Now I have another specialist to add to the mix: the haematologist. It turns out that my neutrophils (a type of white blood cell) are consistently lower than they should be. I’m trying not to think about it too much but it is a bit worrying. This may well be linked to taking a biologic drug (Enbrel) for rheumatoid arthritis, as when I’ve had to come off this medication (e.g. during a chest infection) my neutrophil level has gone back up. It’s a matter of waiting and seeing at the moment. Sometimes it feels like I’m on a continuous loop of investigations and tests. It would be good to step off that conveyer belt for one week!
On a positive note, a recent MRI showed that the fracture in my right foot is healing gradually. After two months in an aircast boot and on crutches, I’m getting around a bit more easily. As I said before, it’s amazing how talkative people are when you’re wearing an aircast boot. It does look rather dramatic – as if I’ve broken my leg rather than one bone. Every day people regale me with their story of breaking a bone or without asking how I sustained the injury. Most of the time I don’t mind – but sometimes it can be exhausting – so then I just smile and say ‘long story’. In the early days, around three people a day thought I’d been skiing! The healing process does take longer – thanks to osteoporosis and Ehlers-Danlos syndrome. I can’t wait for the boot to be off in a few weeks’ time and celebrating afterwards!
Enbrel is definitely working. I can’t believe it. My rheumatologist performed another ultrasound on my hands two days ago and said it was the best so far. The rheumatoid arthritis was the least active she had ever seen it. Inflammation and synovitis in my hands have reduced and the erosions have not worsened. Last time she saw me, she asked me to consider Rituximab because the RA was so active, but I insisted on continuing with Enbrel. Although I started on Enbrel in January 2014, treatment has been interrupted by regular chest infections and low neutrophils, which both led to short intervals without the drug.
When I’ve had to come off Enbrel for just one or two weeks I really notice the difference. My joints stiffen up, I need a hand getting out of a chair or the bath, and my fatigue is all-encompassing. Not being on treatment makes me feel low and every simple task (e.g. opening jars) becomes harder.
Even though the scans show my RA is less active while taking Enbrel, I still have stiff and swollen fingers, extreme fatigue and painful joints. Some of these symptoms (fatigue and painful joints) overlap with Ehlers-Danlos Syndrome, so it is hard to know how much is RA and how much is EDS. Another reason I have pain in my hands and shoulders is from using crutches while I have a fractured foot (probably caused by my osteoporosis). We agreed that I need to stay on Enbrel for as much as possible to give it a chance to have maximum effect (i.e. only take antibiotics and stop taking it when the bronchiectasis is at its worst). The good news is remission feels within reach, more than ever before.
The podiatrist knew there was something wrong with my right foot immediately. It was hot to the touch, skin reddish, and swollen both on top and on the sole of the foot. My foot had been painful for some weeks but I attributed it to normal EDS and RA joint pain. Some days were worse than others. I started limping and regularly felt a stabbing, burning pain searing into my foot when walking.
So I was relieved to have an appointment with the podiatrist. They were going to fit my shoes with new, custom-made insoles. In the end, that didn’t happen. The podiatrist insisted on the rheumatologist assessing my foot straightaway. An x-ray followed which showed a fracture on my 3rd toe of the right foot. Looking at the x-ray was upsetting. Even though I had the evidence in front of me, I still couldn’t quite believe it. Nothing dramatic had happened. I had not been walking more than usual.
Now my foot is strapped up inside an AirBoot for 6-12 weeks and I have to use crutches. The rheumatologist said that I could be ‘partially weight bearing’ which makes a bit less daunting to get around, but it is still hard work on my arms and shoulders with the muscle wastage from RA. One cause for the foot fracture could be osteoporosis. Despite taking weekly osteoporosis medication and vitamin D daily, I have also torn two ribs. Balancing keeping active with minimising the risk of future fractures is going to be hard. It would be useful to know what more I could do to prevent more broken bones. Who wants to feel (or be treated) like a china doll? On the positive side, it’s amazing how many people offer me a seat now that my invisible conditions are seen as a visible disability. People chat to me everywhere – on public transport, at bus stops, in shops, in the road trying to get from A to B (slowly). A foot fracture is a minor setback for a few months but I don’t intend to let the fracture stop me living life to the full.
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.
I recently got back from a week in Italy. Nothing unusual about that, except this was my first week abroad for three years and the first time I’d travelled with medication that needs to be kept between 2˚C and 8˚C. Going by train seemed an easier option than by plane. Although I carried a letter explaining that Enbrel shouldn’t go through the x-ray scanner, my medical case still had to be scanned separately with a special hand-held gadget. Keeping Enbrel cool didn’t worry me too much as it was packed securely with a special freezer pack and spacer so the syringes didn’t touch the pack directly. Following a rather long train journey to Paris and then through France and north Italy to Milan, we checked in to a hotel. The staff were fabulous and offered to put the freezer pack in their freezer and the Enbrel syringes in their fridge, as the room fridges weren’t cool enough. The next day we took another train to Como, then hired a car, which my sister drove up to a village on the west side of Lake Como. I’d repacked the Enbrel and as soon as we got to the villa I put it in the fridge. The only slightly stressful thing was that the fridge didn’t have a stable temperature so we kept having to adjust it. Luckily we’d brought two fridge thermometers so we used those to check and modify the temperature on a daily basis to keep it within the 2˚C and 8˚C range. At the end of the trip, I handed in my travel sharps bin to a pharmacy at Milan station. Not much point in bringing it back to the UK when it could be incinerated there!
Although the logistics of carrying and storing Enbrel across Europe were a bit difficult, having done it once I know I can do it again. Importantly, it will be easier next time. Going on holiday while continuing treatment is possible, rather than missing a couple of weeks’ Enbrel to the detriment of my joints and overall health. Best of all, once I’d injected each time, I was able to get on with going on scenic boat rides, relaxing by the stunning lake, and eating delicious ice-cream in flavours like fig, peach and hazelnut. Most of the time I wasn’t thinking about rheumatoid disease or other health problems because I was so busy enjoying the beautiful scenery of Lake Como.
It’s Invisible Illness Awareness Week 2014 from 8-14 September. This time last year, I wrote about keeping positive. Lots has changed in a year. Anti-TNF treatment (Enbrel) has started to make a difference to my joints by stabilising my existing bone erosions and reducing swelling, stiffness and pain in my joints. But the rollercoaster nature of rheumatoid disease / arthritis means that missing most of my injections over the past month due to illness and antibiotics has reversed this progress. Once again, I’m having a nasty flare, with incredibly swollen and painful wrists. I can’t wait to restart the drug later this week and hopefully see those positive results again. I’m staying positive as much as possible but it is harder to maintain an optimistic outlook when even simple tasks like getting out of bed or the bath are a struggle. Getting back on the medication should improve my quality of life again.
The need for Invisible Illness Awareness Week remains as important as ever. Just yesterday, in a shop, I asked a member of staff about the ‘accessible’ facilities. She said casually, not even noticing my hand splints, ‘Oh, those are for disabled people’. I replied ‘I am disabled, I have rheumatoid arthritis and Ehlers-Danlos Syndrome’. She looked down at my hands, and didn’t seem either apologetic or embarrassed but reluctantly proceeded to show me to a room away from the main shop floor, only reachable by staff with a security pass. What upset me was that she had such a narrow view of disability that she hadn’t stopped to think why I was specifically asking for the ‘accessible’ facilities. Wearing splints sometimes makes people more sympathetic, but mostly elicits stares, although she didn’t even notice! Plus I shouldn’t even have to wear an obvious aid such as splints to make my invisible illnesses visible. What people with invisible illness need is greater awareness and understanding so that when we ask for specific help to make life easier, it is available and offered instinctively, no questions asked.