“No one wants to hear all of the time that I’m always in pain…least of all myself.”
I was somewhat surprised when this thought passed through my mind this morning, as I was stepping out of the shower.
You see, yesterday–as well as the past days and past weeks–there is one conversation that has been repeated over and over, as I visit with family members and friends who I haven’t seen in years. It goes somewhat like this:
Them: How are you doing with your rheumatoid arthritis?
Me: I’m doing really well. What I mean to say is that I am coping really well. My disease continues to progress, but I’ve finally figured out how to live with it, and I think that I’m doing really well.
Them: That’s good. From the outside, you seem to be doing much better than the last time I saw you.
Me: Thank you. On the inside I’m actually doing a little worse…but like I said, I’ve learned how to live with it. I’ve had to make a lot of changes, but many of them have been for the better. I still live with a lot of pain all the time, but at least I’ve figured out how to once again be happy.
And as I’ve repeatedly gone through this conversation over the past couple of months, I’ve always told myself that it’s important to focus on the good while still mentioning the bad, when I talk about my rheumatoid arthritis. I used to think that I was doing this because it might be what “others” wanted to hear…but as I realized this morning, I’ve been responding as such because these are in fact the words that I want to hear.
Don’t get me wrong, I’m all about open and honest communication of the pain and disability with which I live, and I certainly don’t advocate for the denial of one’s feelings and emotions related to these issues (something which I experienced myself for all too long). But when it comes down to day-to-day thoughts and spoken words, I know the pain is always there. I know that it’s not going away, that it will only continue to fluctuate around the high end the pain scale, no matter what pain scale is being used.
But I also know that no matter how bad the pain might be, and no matter how permanent this pain might be, life is still good. Focusing on the good doesn’t take my pain away…but it does seem to make it a tad bit more bearable…and in the world of chronic pain, this counts for a lot.
So yes, I am in a lot of pain. All the time. But this is not what I want to tell myself on a continual basis, this is not what I want to hear like a broken record playing in my head. So I choose to tell myself that life is beautiful..and the trials and tribulations that it constantly presents makes life even more beautiful.
If you find yourself being overwhelmed by the pain, stop for a moment, and ask yourself: What is beautiful about my life? And when you come up with your answer, focus on it as much as possible. And while you’re focusing, don’t forget to smile!
And this, in a nutshell, is how I’ve learned to cope with the pain of rheumatoid arthritis.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy.
I’ve emailed you a couple of times before as a long time reader of your blog, (and now a follower on twitter which I’ve just joined, and love!) and I hope you’ll forgive my presumptuousness but I wanted to share some thoughts and images from my wedding day with you.
Why? Well, my wedding was put off by a year when the RA hit, and I do mean HIT. I’m not going to dwell on how bad it was, suffice to say unless you could have wheeled my bed down the aisle it wasn’t happening, a ring would never have fit, and I don’t think it’s legal to get married whilst high on morphine. Things improved and I learnt to manage, and the wedding was back on! When I started planning though, as I’m sure a lot of RA brides-to-be have found, it was initially very frustrating to try to work out a day that would be wonderful and also accessible. If you’d like to share my story in case there are others out there worrying, please feel free, I can only hope that it helps!
At first I thought of everything I couldn’t have. No long dress that I could trip on, or run over in my wheelchair if I was using it. No short dress that would reveal my often football-sized knees and strapping. No high heels. No steps at the venue. No venue that I wasn’t 100% confident moving around in. No staircase photos. No doing my hair or make up myself. No wedding cake thanks to the gluten intolerance. The list seemed endless….
But then, after remembering that this should be a happy day (!) , I turned it on its head and started thinking about what I COULD have. How about a 50s style mid-length dress? A bright blue pair of new Converse that I could fit my orthopaedic insoles into and be comfortable in? How about getting the legal stuff out of the way before hand and then getting hitched somewhere I felt totally comfortable, my own home? (England’s laws on where you can legally get married are archaic!) What about hiring the best make up person I could find, and asking my lovely hairdresser who’s been dealing with my hair all the way through the methotrexate hair loss to come over and style me? I love baking and am pretty good at it, although fiddly sugarcraft escapes me, so why not make a load of treats myself and forget about a traditional wedding cake? Once I started thinking like this, and threw the usual rule book about what you should do at weddings out of the window, it became so much fun.
I tried to keep it all as stress free as possible before the wedding day, as we all know what effect stress has on RA! Easier said than done, but some awesome friends and family helped with that, as did my wonderful husband (then fiancé), who’s been my most constant support, cheerleader, and peaceful refuge for the last five years. Knowing that I had planned events carefully to take account of my needs whilst still looking natural helped. For instance, my dad walked me down the aisle. Not because of any old-fashioned “giving me away” ideas, but because it was a lovely thing to do and meant that I knew I had a strong arm to lean on should one of my ankles or knees give way. I bought a totally gorgeous pair of high heels to wear for the aisle walk and photos, but one of my ushers had my Cons ready to change into immediately after. We had planned two breaks into the day where my husband and I could slip away and I could rest quietly before rejoining our celebrating guests.
On the day itself I managed to wear the heels for the aisle walk and about half the photos. My dress, designed just for me by the superbly talented and very understanding Jo at The Couture Company felt and looked wonderful. Having the ceremony at home and the meal at our local cafe (the quirky Kitchen Garden Cafe that did a delicious gluten free meal for us) ensured I was totally at ease with all the under-foot conditions. I even had the chance to look confident on my feet when we gave our guests a surprise lindy hop dance class! I started lindy hop in an attempt to relearn my balance when I started walking again, and now love it, going every week that I am able to. It made a pleasant change to be the sure-footed one in a crown of people attempting to move with varying levels of success!
Anyway, I just wanted to share; as I tweeted a few weeks back it feels as though you’ve been with me on my RA journey over the last two years, and you and the online RA community have really helped through this time. If there are any brides-to-be out there who are worried about a wedding with RA, please reassure them, it is possible to still have the most fantastic day with what you can do, rather than what you can’t. And as our photos hopefully prove, you can still look good whilst doing it!
Arthritis is the leading cause of disability in the United States. But with a few simple adjustments, life can be easier and less painful for the millions of people who now permit this common condition to limit what they are able to do and enjoy.
The changes can be as simple as playing with grandchildren on the couch or at a table, instead of on the floor, said one knowledgeable grandfather, Dr. Kenneth Brandt, who is also an orthopedic surgeon and clinical professor of medicine at the University of Kansas Medical Center in Kansas City.
The trick is to decide what activities are important to you and then modify them in ways that ease symptoms like pain, stiffness and fatigue. Arthritis may be a mechanical disability, but it need not turn people into couch potatoes.
I have lived with RA for probably 10 years, but was diagnosed 2 years ago.
What advice would you give to someone who has just been diagnosed with RA?
The advice I would give someone who just found out they have RA is, read up on the disease, join support groups and ask your rheumatologists tons of questions.
Do you use any mobility aids?
I do not have mobility aids.
How has living with RA helped to improve your life?
I think living with RA has slowed me down considerably. I appreciate the small things in life.
Do you have any visible signs of RA?
I do not have visible signs of RA, but the words fatigue are written all over my face.
Can you please describe some of your favorite coping strategies for living with RA?
My favorite coping ability with RA is a soaking hot tub or shower. Take life slowly. I try to stay positive, everyday.
Can you please describe your current medical (traditional and alternative) treatments?
20 Mg of Methotrexate once a week. Folic Acid daily.
Is there anything else about yourself that you would like to share?
I think a small part of me is still in denial. I used to be so active, so full of energy. Now, just making it through a 8 hour work day, is a huge accomplishment. I try to learn as much as I can of this disease, as well as, the others I have.
I’m reaching a point where I’ve come to realize how small a role my rheumatoid arthritis plays in my life, which is quite a change from where I was a few years ago, when absolutely everything I viewed was seen through the lens of RA.
Now don’t get me wrong…the pain and disability are still present, each and every day and each and every minute. Beyond these constant reminders, there are the daily medications, the cracking joints, the morning limp, the crutches, and all the other items that accompany my journey with inflammatory arthritis.
And while I’m certainly not trying to downplay the severity of this disease with which I live…I guess that’s exactly what I’m trying to do, in a way, when it comes to my day-to-day living.
I may not be able to choose whether or not I have rheumatoid arthritis…but I can choose whether I want this chronic illness to be just one part of my life, or if I want my RA to consume my entire life.
I choose to let it be just one part of my life.
I once let it consume my life, those days that turned into months which turned into years, where every waking second was focused on the pain and on what I could no longer do. I remember those endless nights following discussion boards and blogs and medical information websites trying to learn more about every possible fact and figure, every potential complication and side effect, as I wondered (more like feared) what the future had in store for me. I remember the fear, the misery, the sadness, and the depression which filled my days.
Last night as I looked back on this aspect of my life with rheumatoid arthritis, I couldn’t help from noticing a drastic change in the way I think: soon after I received my diagnosis, I thought my life was over. I’ve since learned, however, that in a weird sort of way, it was only just beginning. Many of my current biggest strengths (patience, ability to stay calm during challenging times, appreciation, dropping many consumerist habits, etc.) I attribute directly to changes that I decided to make after chronic illness entered my life.
Some nights as I lay in bed, reflecting on the day I just had, I can’t help but chuckle at the omnipresent “RA” that is always floating around in my mind. Just as you might expect an RA-Guy-like bat signal to appear, there are those two letters which are seemingly simple, but which stand for so much. Like I said, it’s always there…and just like I not longer expect the pain and inflammation to leave, I also no longer expect that the corresponding thoughts and emotions will just magically disappear. These thoughts need not be abandoned and ignored and made the victim of denial, but they also need not be front and center, always demanding my full attention…if they’re just off to the side, where I can continually observe them and respond accordingly, I know I’ll be just fine.
In the months and years following my diagnosis, I used to assume that depression and misery were a foregone conclusion; after all, how could I possibly be happy while living with a condition that takes me from full mobility to complete paralysis in a matter of minutes, and which often presents pain that is so intense, that life can sometimes seem to come to a complete standstill?
I’ve since learned that even in those moments when it appears like I cannot do anything, I can still always do something…and when I realize that something could be designing in my head while I don’t have use of my body, or thinking about good memories from the past of hopes for the future, or if I just challenge myself to be in the moment and familiarize myself even more with the overwhelming pain, then I am reminded that I can indeed always do something that keeps my mind and body both alive and soaring.
I may not be able to choose whether or not I have rheumatoid arthritis…but I can choose whether I want a life full of happiness, or a life full of sadness.
I choose a life full of happiness.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!