I have so many people contact me to tell me thier RA stories. My heary hurts for all of them because I know what it feels like to feel lonely and alone with this awful illness. Below is an interview I recently did for an RA magazine. I thought I'd share it here too, it might help shed some light in the dark.
How was your condition diagnosed?
It took a while to diagnose me correctly. I was a keen runner so initially the swelling in my feet seemed most likely to be fractures from exercise. I went to and from the hospital. Finally, I bumped into my doctor on the school run who made an appointment for me at the rheumatology department. I had an MRI and lit up like a Christmas tree.
What were some of the biggest problems with getting your diagnosis?
My condition came on overnight, literally. I woke up at 4am on a Sunday morning and thought a spider had bitten me, the pain was like nothing I’d ever known. Because it was so sudden, it took a long time to get away from X-rays and sprain diagnoses to the rheumatology department.
Do you think the time of your diagnosis impacted how far your arthritis had progressed along with how well you responded to treatment?
Yes, it took three months to get my initial diagnosis, and my feet have damage due to the time I was not controlling the disease.
Has your condition been linked to anything specific such as lifestyle factors (e.g. smoking) or a family history of rheumatoid arthritis?
There is a history of RA in the family. My mother was hospitalized with it in her early twenties. Mine came on shortly after the birth of my third daughter. I had three children in three and a half years. I think the stress triggered the onset.
What forms of treatment were/are you given to help with your arthritis?
I inject methotrexate and an anti-TNF drug called tocilizumab (trade name: RoActemra). I have steroid jabs as and when I need them. In my opinion, it’s about as effective as any drug can be for this illness.
Unfortunately, I do experience some side effects. The methotrexate gives me mouth ulcers, makes my hair fall out and makes me feel sick. The injections themselves also lead to bruising and I often feel run down.
Has your rheumatoid arthritis affected your health in any other way (i.e. related conditions)?
RA has affected me mentally. Depression, anxiety and chronic fatigue are common factors, and can impact relationships. It has led to my husband and I separating for 18 months – something I believe was caused by the stress of my illness. It is hard for people living with an RA sufferer to remember the pain and trauma being experienced. People become ‘immune’ to your lack of immune system. They become used to seeing you limp, or walk with a stick for example. “Hurry up” can replace “Do you need a hand”. RA certainly puts the vow ‘sickness and health’ to the test.
What is it like, living with RA?
It varies a lot. I like to compare it to surfing – sometimes I ride a wave of good health where I run 10Ks all week, do obstacle course races at the weekend and weight lifting with my personal trainer, and sometimes I feel like am drowning in a fog. Pain, fatigue and confusion washes over me and all I can do is lay in bed and sleep.
Even on good days I need to sleep in the afternoon. This is hard as I have three kids, a dog who barks at the cat, who jumps on the bird cage and makes them squawk and a messy house to manage, as well as my work as a writer.
What concerns you most about having rheumatoid arthritis?
My biggest concern is the fact that RA is a life-shortening disease. The fact that the drugs I take for my condition can affect long-term health and increase the chance of strokes and heart attacks. The fact that I can never be sure I will be well enough to race, travel or help out at school. The impact it has on my children is another concern. The possibility they will one day develop it too.
What advice would you give anyone who thought they might have rheumatoid arthritis?
Get to the doctor and nag them for a blood test to check your markers. Nag for an MRI. Keep a diary of pain, food and activity.
Be kind to yourself – hot baths, sleep and cake is sometimes the only thing that will make you feel better. Make sure you take a stomach protector before taking too many ibuprofen, or you may get an ulcer, which hurts. Much as I am loathe to admit it, the cake should probably be vegan…
Has rheumatoid arthritis led to any changes in your lifestyle?
Diet can have a huge impact on auto-immune conditions, especially energy levels. I have learned to reach for a banana instead of a chocolate bar, avoid bread and dairy and eat greens for protein. It’s not the most fun in the world but it does improve energy and lower inflammation.
My food blender changed my life. I can whizz a load of foul tasting supplements (turmeric, chia, maca, spirulina, etc.) up with some apple, kale, ginger and coconut water and it tastes good. RA drugs are strong, and can strip the body of bad, and good. Probiotics, vegetables and lots of water can go a long way in helping.
Accepting RA means making life changes. It can’t all be done at once. I was not ready to change my diet until about 18 months into my illness. I still have days where I eat what I like, but in general, I do the research and eat accordingly.
I also exercise as much as I can. Heart health is vital for RA sufferers. Our bodies are attacking themselves, which puts great strain on the heart. People cannot understand how I can run with RA but when I am remission it is no more dangerous for me, than for anyone else. In fact it helps stop my joints locking and getting worse. Cardio exercise (power walking running, biking, swimming) also helps with energy levels, as well as being the best at beating depression and anxiety.
Which resources did you/do you use to get information about your condition?
Arthritis Research UK,NRAS and Arthritis Action are particularly good sources of information. In terms of social media, I am a member of some forums on Facebook and I subscribe to newsletters. I also blog about my life with rheumatoid arthritis to try and educate and support other people in the same position. I use the #rheumatoidarthritis and #ra in all my social media tags
Do you think more could be done to help people with Rheumatoid Arthritis?
I think more and more is being done. There are lots of wonderful support groups. The RA nurses are very knowledgeable and very kind. RA is still confused with osteoarthritis which is very annoying. If I hear one more person tell me they have what I have ‘in their knee in the winter’ I will scream!
By the same token, when we are well, it is hard not to feel like a fraud. I often hear ‘I thought you were supposed to be ill’ a lot. It’s really important to make RA friends who understand what living with the condition is like.