The holiday season has been fantastic. I love it. I love Christmas. I love New year. I love celebrating. I love looking forward to all of it, anticipating, preparing, and then wringing out the experience for all its worth. The family, the friends, the food, the presents, the fun. It’s all good.
Except for those bits that aren’t.
The pain. The fatigue. It’s hard.
Things that I used to get done in an afternoon (like prepping Christmas Eve dinner – the main family celebration in my family) now take a good three days to plan, shop for, prep and finally cook. The exhaustion is hard to deal with. The knowing I need to sit down now, or lie down now, take those pain meds and STOP RIGHT NOW is difficult. My personality is such that I want to push through and then rest only when the work is done.
My RA doesn’t agree with that. Or it might be my lupus. Or my Sjogren’s. It doesn’t matter. My autoimmune dictator says STOP. NOW. Or fall down in five minutes and not get it done at all.
This has been a very hard lesson for me to learn. This year I think I nailed it. I paused. I rested. And when I was running about an hour late, and everyone had arrived, and were waiting for their meal, I just chilled. I served champagne. I served snacks. Everyone was happy. The atmosphere in the kitchen was fun and festive and it was not the end of the world that I didn’t have everything done perfectly, and on time. Previously I would have stressed. No more!
Points to me :). I have made progress! And my family were relaxed and understanding.
But then there are the other people. The ones that just don’t understand, and probably never will. The more extended family, or friends, who really don’t see me that often but are not afraid to share their health knowledge with me. Which sometimes comes out sounding a whole lot like judgement.
Some of my favorites this year:
‘Should you be eating that? You would be a lot healthier if you followed diet xxx’
From a Paleo nut who thinks that the Paleo lifestyle will cure EVERY ILLNESS KNOWN TO MAN.
What I would love to say: Yes I should be eating that. Because I want to! As I eat mostly fresh fruits and vegetables, some protein and some treats here and there, I’m going to eat whatever I want today. And if I want a glass of wine I’ll have that too! Because what I eat and drink has absolutely nothing to do with my symptoms. I have tried every elimination diet known to man. So how about YOU put down that piece of plum pudding (which is not very Paleo at all) and ask yourself if YOU should be eating that. Or why don’t you just worry about your own plate?
What I really say: I’ll think about it. Thanks.
‘Wow, are you taking ALL of those drugs? And they don’t help much? You know they have really dangerous side effects, right? Maybe you should just throw them away.’
What I’d love to say: Well, if I didn’t take them, I would most certainly be feeling much worse. Most likely my disease would be attacking my internal organs even more than is already happening. I’d probably be going blind and I’d definitely be bedridden or in a wheel chair. And if I stopped my prednisone cold turkey, as you suggest, it could kill me. So I think I’ll just keep taking them, as per my doctor’s advice, but thanks.
What I really say: I’ll think about it. Thanks.
‘I feel your pain!’
This is said to me a lot. Usually it’s just a throw-away line. Light hearted. A joke. It’s usually not offensive. But a few people say it and actually mean it. They actually think they do ‘feel my pain’. They are comparing their injured knee, or their mild case of ‘arthritis’ to mine. Or sometimes they are comparing their terrible bout of food poisoning…or even working on convincing me that their diabetes is a much more serious disease than ‘just arthritis’.
What I’d love to say: Actually, no. No you don’t. You do NOT feel my pain. Because your shoulder is sore or your knee was sore the other day, you most certainly do NOT feel my pain. When you have had daily, severe pain for seven years straight. When you’ve had cortisone injected into most of your joints, including your jaw (ouch!). When you’ve taken several kinds of (low dose) chemotherapy, and biologicals that you have to self-inject, not to mention NSAIDS and oral corticosteroids with all the side effects that those bring along to the party. When you’ve had a few surgeries to clean out your joints. When you’ve had nerve ablations. When you’ve had every body part poked, prodded, injected, x-rayed, MRI-ed, nuclear bone scanned, bone density scanned. When you have to have blood drawn monthly and you spent half your life in doctors waiting rooms. When you’ve lost your marriage, your career and most of your friends. When you can’t get out of bed without morphine and oxycodone, and a bunch of other stuff that I have forgotten. THEN maybe you might ‘feel my pain’. So in the meantime, shut up. Thank you.
What I really say: Haha.
‘Oh you look so GOOD! You’re up and you made all this food, and you did all the decorations. I didn’t think you’d be able to do all that with your illness.’
The subtext of this one is ‘if you can do all that, how come you can’t hold down a nine-to-five job?’.
What I’d love to say: Yes, it takes a lot of planning, and preparation and pacing. Gone are the days when I could throw this together with ease! (laugh, chuckle). And I had a lot of help, and I’ll need several days to recover. I will be paying for this little celebration for at least a week, and I don’t mean financially. I have put all my energy into this celebration, taken extra pain killers and anti-inflammatories and believe me, there will be a price. I will feel extra pain and need extra rest for several days. So be grateful! Bon apetit!
What I say: Thank you.
I saw you at the gym last week. You looked great! So fit.’
This is a variation of the one above. It also means, ‘if you can go to the gym, why can’t you hold down a job?’
What I’d like to say: Exercise is highly recommended for inflammatory arthritis, and reduces inflammation, keeps muscles, tendons and ligaments strong, and keeps your heart healthy, particularly as heart disease is the biggest killer of people with RA. You don’t see the prep that goes into that 30 minutes at the gym. You don’t see the pain killers and other drugs I take so that I can work out. That I take those drugs on a schedule that I time for best effect. Usually one hour after taking my oxycodone, I feel at my best, and so can go exercise. And even then, only sometimes. You also don’t see the two hours AFTER my exercise session, where I collapse on the couch to recover. Nor do you feel the increased pain I feel, but I endure, for all of the reasons I listed above. I exercise because it’s important for my health. It’s not easy. It hurts. It hurts a lot. But I do it because I want to hang around on this planet as long as possible. You seeing me looking ‘fit’ for 30 minutes is not an accurate indication of how I am for the other 23 and a half hours of my day!
What I really say: Thanks.
‘My cousin’s best friend had what you have. She went to this naturopath in Melbourne (8 hour drive away) and was totally cured. You should go.’
What I’d love to say: If you’d like to pay for my flights and accommodation and consult fees, and any completely unproven natural supplements that she will no doubt ‘prescribe’, I’ll happily go see your naturopath. I doubt she’s ever heard of half my diseases though, but will tell me I need to ‘cleanse my liver’ and follow whatever diet she favours. It could be vegan, or paleo or maybe the blood group diet. She’ll definitely tell me to quit sugar, because that’s the latest fad in the the pseudo-health world, based on real facts but distorted well beyond the realms of evidence based science. Naturopaths are great at clearing out ‘toxins’ from the body, but they can’t often tell you WHAT toxins, or why they are toxic. And by the way, are you aware that in as little as 18 months, studying an online course, I could become a naturopath too? So I might just stick with my rheumatologist and her 12 years plus of rigorous scientific education. If you don’t mind!
What I say: I’ll think about it. Thanks.
‘I have this great homeopath, you should go see her.’
What I’d love to say: ‘You do know homeopathic remedies are just water, right???’
What I say: ‘Thanks, I’ll keep that in mind.’
‘Oh I know! I had a migraine the other day. But I just push through the pain, and get it done.’
What I’d love to say: ‘Wow, I’m privileged to be in the company of such a hero. You are truly awesome. Pushing through that incredible pain. You really are amazing. So strong. So inspiring. I wish I was as tough as you.’
What I really say: … (change the subject)
‘So I hear you’re better now.’
What I’d like to say: Yes, better than I was this time last year, when I almost died. Better than that. All better? No. I will never be all better. Never. That’s the thing about an incurable illness. It can’t be cured. I will NEVER be all better!
What I say: … (aaaand change the subject)
Note: While there is a huge element of truth in this, and this stuff was actually said to me, I am writing it tongue in cheek. Most times when faced with these kinds of statements I will try to politely inform and educate. But at Christmas celebrations, or similar social functions, I just don’t want to get into it. I want to relax, and enjoy myself. But my brain does conjure some excellent responses I’d to love to have the nerve to say!
I also I believe complementary therapies can be very helpful, and they are exactly that – complementary. As long as you check with your doctor and consider that natural remedies can interact with prescription medication, supplements and diet can help inflammatory arthritis symptoms incredibly for some people. Particularly people with more mild disease. And exercise, whatever you are capable of, is always good. Even light stretches will help you retain function.