Keeping Me Me

By ASWarrior

2 min read

I was diagnosed with AS about a year ago. Two months ago, I switched from injections to infusions and have been in a horrible flare waiting for the new medication to bring relief. My rheumatologist says my AS is “aggressive,”… and it sure feels like it.

When I first got diagnosed, it was bittersweet. Waves of relief for being heard by a doctor after years of misdiagnosis and dismissal, with waves of dread and despair with the weight of what a progressive disease diagnosis means.

I've tried to take each medication change and treatment with hope and positivity. And was proud of myself for a while on my ability to cope. But sometimes, it’s hard, and I struggle to see myself in the mirror.

Unable to do the things I love

I stopped working out back in late 2021 due to pain. Naturally, I gained weight. I’m the heaviest I’ve ever been. I tell myself it’s ok and all bodies are beautiful, but I still don’t recognize the person in photos. I really miss moving my body, from playing tennis to lifting to walking more than 30 minutes without pain.

As my AS progresses, I find myself losing other hobbies. I have been unable to paint as much as I used to. Holding onto and using paint brushes is difficult, and bending or sitting for long periods of time causes stiffness. Likewise, I love my job, but the fatigue and brain fog make it difficult to be my best. I started dreading social outings because I’m so tired.

It feels like a lot of the pieces that made me me, aren’t accessible. Some days I do better; I sing along to songs on my drive to work despite whatever symptoms are there. Some days are really hard; I won’t look in the mirror and debate going on disability.

Support on hard days

On hard days, I try to remember that my body is working really hard. There’s so much going on I can’t see and trust the process. My appearance is only part of who I am, and this might be temporary until the medication works. I lean on my husband for support and love.

I call up a friend or spend time with my cats. I practice gratitude while also making room for the sadness, which helps me get through the rough patches when my resilience is lacking.

Ive learned that having an assortment of coping skills and support is essential with chronic disease. We’re all humans, and even warriors need rest. And that’s how I keep me me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Cher D Member
<inline-mention username="Anne-Marie Raymond" user-id="4169238"/> <inline-mention username="Anne-Marie Raymond" user-id="4169238"/> Your words of kindness touched my soul. Empathy is a rare gift that you graciously share with us. Before my diagnosis, I wrote two books, one of which is my autobiography entitled GANDY DANCING ON THE SECOND FLOOR. The second was about an Investigator on a difficult case. As I neared the final chapters, I was in great pain, not yet having my full diagnosis. I finished it but it lacks the quality of the first. AS sneaks up on us until we get that Ah Ha moment in the doctor's office. Writing was the first thing I gave up. Painting came later and recently. I did get my new glasses but like that name of an old rock group, I am "One Eye Blind." I see my eye doctor tomorrow, so we'll see what he says. I love reading a good mystery in which the ending makes you gasp with surprise. I am hoping for a good novel with large print and hope that accomodations exists. In the meantime, I listen to my YT playlist in my She Shed and may try charcoal sketches. You can't keep an AS person down, just tilted a bit! 😊 Thank you for all you do here. Your work is a gift to us. I send you a virtual hug with enormous gratitude. May we all continue to dance as best we can. 
1. Anne-Marie Raymond Contributor
 <inline-mention username="CommunityMember230" user-id="4720322"/> Thank you for that wonderful reply, it's so great to hear back from you and to learn a bit more about you! I had to pause for a moment and look up your books. I'm really keen to read them both as they sound intriguing. Especially your life story, which sounds like you've managed to cram several full lifetimes into already! I have come across so many truly creative people in the AS community over the years. It's lovely to come across a new one in you. I really enjoy a good mystery too, especially when there's a twist in the tail. I have an idea for a novel that I play with from time to time, but getting that clever ending is challenging indeed! Maybe one day I'll have it figured out. Wishing you all the best at the eye appointment. And thank you so very much for the hug and your inspiring attitude, you've really made my day. Anne-Marie (Patient Leader)
2. Cher D Member
 <inline-mention username="Anne-Marie Raymond" user-id="4190459"/> thank you so much for your kindness and interest. Perhaps many can relate to parts of my autobiography. That is my hope and I'm so gratified by your interest. I was an Investigator for a government agency for the last half of my career. The story in Coal Hollow closely resembles one of my investigations and I humbly received an award for that but still, it lives in my mind. I began severe throes of AS toward the end of that novel and have not been able to write since. I just thank God for putting me in the right place at the right time. I am so humbled by your gracious words. May your day be as pain-free as possible. 🌹
Cher D Member
<inline-mention username="ASWarrior33" user-id="6794121"/> you had my attention as soon as you mentioned your painting, and I sighed with sadness. Recently I asked my husband to dismantle my art studio. I was diagnosed AS and RA about six years ago. I painted through the pain until several weeks ago. I realized I no longer has the physical stamina for it. Depression set in for both of us, actually. My husband had been my cheering section with each completed canvas. Now what? I had always loved to read but have glaucoma in one eye and Macular Degeneration in the other. As fate would have it, I recently started getting shots in my MD eye and they're working! Off we went to get a prescription for glasses. The optometrist was amazed by the progress in my MD eye and said the shots are really helping. I was able to read the very smallest sentence on the exam! So now we await the glasses I ordered, and I am anxious to buy my first book to read in years! Hearing this, my beloved husband turned my studio into a beautiful room with good lighting and soon I will sit in the special chair he bought to support my back so I can read in comfort. The depression about not painting has mostly abated. What's the old saying, "When one door closes, another opens." AS does not always win. I wish you the best and hope you, too, find another door. @
1. ASWarrior Member
 <inline-mention username="CommunityMember230" user-id="4720322"/> I totally understand!! Sending you good vibes as well! 
2. Anne-Marie Raymond Contributor
 <inline-mention username="CommunityMember230" user-id="4720322"/> I am so pleased to know your eyesight is improving again! That really must have felt like a terrible blow on top of everything else, and then such a relief when the injections began to work. I must say my own eyes welled up when I read your post, mainly because of your wonderful, undefeated attitude and also your very supportive husband! How lovely that he shares in this with you and cares so much about your happiness. Those of us with caring partners who navigate this journey with us are fortunate indeed. I'll be thinking of you in that beautiful reading room and hope it brings you a lot of joy. I wonder if some of your paintings are featured on the walls, and because I'm an avid reader myself I'd really love to know...what do you like to read most? Wishing you all the very best. Anne-Marie (Patient Leader)
Motherprednisone Member
Boy do I feel you ASWarrior! Even before I had to retire I started gaining weight. I feel a lot of this was due to Prednisone from injections, flares, constant stress. I read an article that said it takes 6 months to lose all the weight from Prednisone after you’re off it. I don’t even have an appetite increase anymore on it, just the emotional rollercoaster. SI injections keep me mobile and although I try to push through, it’s what gets me out of the worst flares. Also, especially for older people with AS, it’s really hard to exercise or eat basically nothing enough to lose wt. I try not to care but I’ve gone up a size in clothing and it’s really hard to look in the mirror now. Let’s keep our light shining though.
James Hollens Moderator & Contributor
Hey there, I have so much respect for how brave you were to open up this honestly - thank you for sharing this story with the community! I'm sure a lot of us with AS can relate to a lot of what you have been through here. When I was first diagnosed I was unable to walk for almost a year and the pain made working out impossible for me too. I don't think I realised just how much my body changed during that time until I looked back on photos after but thankfully after getting my treatment and self care right I was able to exercise again. Although I do things a bit differently than my pre diagnosed self, using resistance bands more and taking greater care to stretch and prevent injuries. Fingers crossed you will be able to comfortably do some more movement soon. Have you been referred to a physiotherapist at all? Life with a chronic illness sure is as much of a mental battle as it is a physical one and I think that having an array of coping strategies is such a great idea and I am glad to hear that you have so many of them! I really hope that you are able to see some relief and improvements from your treatment soon. Sending love and positive vibes, James (Community Member)
1. ASWarrior Member
 <inline-mention username="James Hollens" user-id="2386640"/> Thank you for the good vibes! It’s definitely a mental and physical journey for sure. My relationship with movement has definitely changed.

Community Poll

Have you taken our In America Survey yet?