When I say we are warriors, I mean it.

June 7, 2017

 

 

My name is Johanne, I am 34 years old. I was diagnosed with Rheumatoid Arthritis in 2007 - almost ten years ago now! Although it has been relatively well controlled since then, I have suffered a few issues here and there such as the occasional flare-up and often, immense fatigue. I have also had to pay closer attention to my diet, and to adapt my work and social schedules, to allow for rest when needed and be honest about activities I can and can’t do - or rather, that my body will or will not allow me to do!

 

In October last year, having successfully managed to stop my regular intake of steroids, and to gradually reduce my weekly dose of Methotrexate, I was feeling like I was in a great place. I was starting a new and exciting job in backstage theatre, living in a lovely flat, enjoying a small but supportive bunch of friends. I was feeling healthy and balanced - alive! I forgot, one week, to take my MTX, and when I realized, I decided to stop taking it altogether. I have always been keen to reduce my intake of “traditional” medicine and especially MTX, because it is such a hassle, particularly on a heavy work schedule, to find the time and space to have a blood test done every month, and suffer its side effects such as “brain fog”, intense lethargy, and a weakened immune system, susceptible to pick up most “bugs” going around. I have, a few times, tried to find natural alternatives to treat my RA - but I have either been limited by time, money, or dedication. So finally, after stopping MTX, my GP told me off, kindly, warning me that my symptoms would come back, like a boomerang, in about 3 to 6 months - but I decided to stick it through nonetheless.

 

In the first few months after coming off MTX, I felt fine mostly, although a lot more tired and hungry than usual. I attributed this to my job mainly, which would often see me through 12 hour days, 60 hour weeks, and was quite physically challenging. At times, I would find it harder to get up in the morning, feeling sore or “heavy” - but, again, I would attribute this to the nature of my work. In February, I was offered work in a different department - one I had always hoped to join, since my first days in uni... back in 2007 actually, right around the time I was diagnosed! Once again, I stuck it through the first few weeks. But after being offered more work, and the department became busier, this equally physical job started to take its toll on my body.

 

I started to try different remedies, recommended by friends, and to consult a herbal doctor who had been recommended by my massage therapist. He asked me to start on the GAPS diet, and prescribed different herbal supplements, including a potent herbal tincture. All the while, I was having more and more trouble getting through the day at work. Not only was I feeling more and more fatigued, I was starting to feel immense pain in my left wrist, and every time I would use my left hand and wrist, I could feel flashes of pain shooting right up to my elbow and shoulder, as well as pain and inflammation in the middle of my back, and the top of my neck. I would grin and bear it, although every so often I couldn’t help but escape to the bathroom to sigh and cry. I had wanted this job so bad, why was I was I in so much pain? I felt somehow that I was being punished. To make matters worse, personal events contributed to increase my plight - my father had been suddenly taken in to hospital, was diagnosed with dementia, and I had to move house.

 

Today, it has been almost one month now since I have had to stop working. I had been reducing my days from three, to two per week, and eventually just the thought of going in was killing me. I was also feeling guilty about coming up with different excuses to explain my need to take time off, and feeling like I was massively letting my boss and colleagues down. So eventually, I had to come clean!

 

Since then, I feel like I have been going through hell... My symptoms, just like my GP had said, have come back to attack me, and once again, I can feel the head-banging, tearjerking pain I had first experienced before I was diagnosed ten years ago. The difference now, though, is that I am seeking proper (better?) help, am more aware of my body, and have a higher threshold for pain, so I know what to expect and am psychologically equipped to soldier through!

 

And believe me, as many of you know, I am sure, from suffering an “invisible illness”, soldiering through is not an option, it is indispensable - a way of life, a state of mind... A daily struggle. I am lucky and blessed to have friends and colleagues who are supportive and tolerant. But there are many others who don’t truly believe or understand what is going on inside this body, even when I try to explain, just because there are no external signs of my condition - unless I wear a brace, or carry around a cane!

I am determined, now more than ever, to go back into remission and stay there, and to be healthier than ever before. I have read many successful remission stories, so I can definitely do it too. I managed to come off the emergency course of steroids I had been on, and am hoping to soon remove the high dose ibuprofen and co-codamol tablets I heavily rely on to alleviate the pain... I have recently found a friendly local multibed acupuncture clinic, who have so kindly agreed to give me treatment for free, in exchange for me spreading the word about them. They have also recommended a polyclinic in town, and I have an appointment next week to set up a Chinese herbal medicine treatment. I am also going through the phases of the GAPS diet one by one, and although it was tough at first to get set up, I am starting to enjoy it! If you had told me, ten years ago, when I so loved smoking weed and satisfying my munchies with junk food binges, that one day I would be eating coconut oil by the spoonful, making my own yogurt, kvass, bone broth and kefir, I would have laughed in disbelief...

 

Before I go, here are two of my favourite comments from unknowing or ignorant people I have shared my experience with, because they just highlight the prevalent misunderstanding and prejudice linked to “invisible illnesses”... “But, aren’t you too young to have arthritis?” - hmm, if only I had been asked for I.D. before I was diagnosed! “But you look absolutely fine!” or, even better - “You’re lucky that it doesn’t show” - Well, you have no idea how much courage and determination it takes for me to be able to get around despite this crippling pain, and pretending like I’m fine when I’m absolutely not. And when I decline an invitation, please don’t take it personal - it’s not that I don’t want to go, it’s that I literally CAN’T go.

 

When I say we are warriors, I mean it. Sometimes, my body hurts from actually doing nothing all day... and other times, from overdoing it! And sometimes, I am so close to giving up and to stop being optimistic, when I go to bed one night almost pain free, and wake up the next morning feeling like I have been beaten up with a baseball bat in a dark alley. The struggle is real, every single day : often, in the morning, I feel like I am 85 years old, and finish the day practically reborn! And at times, it is truly soul-crushing when I think that some days, the best moment is when I manage to bring a mug of tea to my lips with only one hand, or I can get in or out of bed without actually lifting my legs with my hands. But, despite all this, I am grateful, every single day, to still be alive, and remind myself that there are others out there suffering more than I am.

 

RESOURCES:

http://www.nras.org.uk/

http://www.arthritisresearchuk.org/

https://www.rheumatoidarthritis.org/ 

 

 

 

 

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