Having the right support network is everything - Argus Friday 6th November 2015

Posted Monday 9th November 2015   By Ericka Waller

I have Rheumatoid Arthritis (RA). When people hear the words they often think I mean a sore knee or a dicky hip, like your nanna has in cold weather. RA is a chronic auto-immune disease that affects the whole body. There is no cure. When the Specialist diagnosed me, I thought she had made a mistake. I was 30, had just had my third child and exercised five times a week. When she went on to list all the medications I would need to take and their possible side effects my head swam. My whole life changed in fifteen minutes. I went from someone who you could never pin down to someone who you could never get up. The drugs took a long time to work, and the recovery was slow. Joints, stiff from lack of use, could not do much and I slept three to four hours of the day away, waking no less tired, tangled in sweaty bedsheets. Depression hit hard, life slipped away. My joie de vivre, my marriage, my friends, my hobbies. All I wanted to do was sleep. It took me two years to stabilise and learn to live with my disease.

I do all I can to stay well. I eat a vegan-based diet. I drink those nasty green juices made in Nutribullets, I take foul tasting supplements, as well as injecting my drugs each week.

About a year ago, I even managed to start running again. People were shocked "I thought you were supposed to have RA" they commented on facebook photos of me holding a medal, covered in mud from a Warrior Run.

I do have RA and I always will. It will reduce my life-span by up to 12 years, according to the Rheumatoid Arthritis Society (NRAS). I have a doubled risk of heart-disease. The drugs I am on attack my immune system, which is already attacking itself. This puts great strain on my heart, and I catch everything going.

I will be on these drugs for the rest of my life.

This week I came out of remission. People have been shocked to see crutches in place of my running gear on the school run. “But you were dancing at a kid's party two days ago? I can't believe it”, then after a pause, "probably all that running you've been doing."

I've learned a couple of things during my illness. I will dance at another kid's party again soon, I will run another race, and I don't need people to believe I am sick.

Odd as it may sound, I'm grateful for my disease. It has made me appreciate my health on good days, and find strength in pain on the bad ones.

I have seen the milk of human kindness, and heard the ignorant opinions of misinformed nay-sayers and those wanting to make money out of me with 'hocus-pocus' remedies.

If one more person tells me Reiki cured them, I'll take them out with my walking stick.

I don't have a disabled badge because most of the time I don't need one, and I could not bear the scorn of people who saw me in park in disabled bays on days when I am in remission. I swear people want to see disabled drivers fall our of their cars, minus arms and legs, otherwise there won't believe there is  'anything wrong with them'.

RA affects 700,000 people in the UK. The cost to the NHS for treatment is 700 million pounds per year. However, a report by NRAS estimates that RA costs the economy almost 8 billion pounds a year, with sufferers taking an average of 40 sick-days, compared with the national average of six days.

I'm pretty sure if drinking Molasses and cider vinegar really worked, the NHS would not be spending such eye-watering sums on drugs.

While, I am on the subject the treatment I have received from the NHS over the last four years has been nothing short of outstanding.

I visited various departments before finally landing in Rheumatology. Each one showed me compassion, respect and followed up on everything they promised. I've had my bag carried, my taxi booked for me and my walking aids padded out to make life easier. 

I have been referred to support nurses, support groups and clinical trials all in the hope of improving my quality of life.

The constant exposure to my illness has made the teams who look after me no less sympathetic to my pain.

I don't even mind the blood tests, because the staff are so cheery, nor do I mind the waiting rooms with their giant fish tanks and out of date People's Friends. I often feel more at home there than I do anywhere else. The people I see in hospital understand me better than anyone else.

We are incredibly lucky to have such a fantastic NHS service and we must do all we can to support them. I speak from experience when I say that if you do not have your health, you do not have much.

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