My Story - A real wake up call to re-evaluate my lifestyle
I was diagnosed with rheumatoid arthritis (RA) at 38 after a viral infection caused joint inflammation that didn’t go away. As a single parent juggling freelance journalism work with a part time job in a natural health centre it was a real wake up call to re-evaluate my lifestyle.
I was diagnosed with sero-positive RA, which came as a big shock, as there is no history of it in my family. I was offered Methotrexate and steroid injections by a rather old school GP and felt cornered so asked for a second opinion and referral to Brighton hospital which had a rheumatology research department. I spent six months on a gluten-free diet to reduce inflammation and tried various therapies: colonics, biofeedback, reflexology and massage. They helped to a point in terms of relaxation but the pain and swelling persisted and I was feeling exhausted from not sleeping well and finding it difficult to get out of bed with morning stiffness.
The second opinion was that if I didn’t take medication I risked permanent joint damage, which may require surgery so I started on Methotrexate. My dosage has changed and I’ve seen several locums since (after bursting into tears about being unable to cope, a lovely Greek consultant offered me Biologics – a combination of entanercept (Enbrel) and methotrexate). I have been doing weekly injections for a few months now and feel pretty normal again, which is a revelation and something I don’t take for granted (like childbirth it’s easy to forget how bad joint pain is once it’s over…) but when I have a flare up it is an instant reminder.
I still see medication as a temporary solution and my goal is to find out more about what causes RA and to get it into remission.
Exercise has been key in staying on top of my RA. My approach is to work from the ‘inside out’ – if I feel strong in my body and in a positive mindset (which endorphins create) I want to be out in the world and am more productive. Daily walks are non-negotiable and I have created a self-management routine, which includes massage, my eco Pranamat (an amazing acupressure mat), journaling, blogging, visualisation when I inject meds and regular orgasms – yes! Orgasms are natural painkillers; make you feel happy and relaxed and I have made them part of my working day as a sex toy reviewer.
RA has been a valuable lesson in terms of self-care, priorities and looking after myself. It has forced me to consider how I spend my time, what nurtures and energises me and to set realistic goals for my work. Health is everything and our bodies are in a constant state of repair – their goal is homeostasis and it’s helpful to keep this in mind when you have a long-term health condition like RA. I have lived in London for years, backpacked all over the world, carried shopping and a child with no car to lighten the load, juggled various jobs and been in debt throughout my 30s – all of which have no doubt contributed to my ‘dis-ease’.
A positive way to think about pain is as a form of healing with your body shedding what needs to be expressed so that you can move on. In the early days of RA I did a creativity course called The Mastery of Self-expression, which was a safe space to cry, laugh and something for myself – a spa weekend for the soul – and this helped me with self-acceptance and loving myself a little bit more.
Ailsa has done an amazing job setting up NRAS and the society is doing wonderful work – it is fantastic to have access to research, courses, opportunities to get involved and support on the other end of the phone. I will do some charity events, join the NRAS Lottery (£25K would help towards moving somewhere warmer… which is one goal), use the Health Unlocked Forum and make use of initiatives like the Save at Sainsbury’s Card which donates funds to NRAS from your weekly shop. It is well worth the annual fee as a gift to yourself.