“Alas, physical energy must be conserved, but the engine inside the soul revs up just the same. Every day, I hear people with RA talk about the frustration of these restrictions and limitations. If physical energy remains limited, maybe we can become limitless at something else – like compassion or patience or joy.” Quote from RA Warrior blog. http://rawarrior.com/severe-rheumatoid-arthritis-can-leave-you-stuck/
We RA’ers have very limited energy reserves. This keeps us from doing many of the things that tend to define us. In my case, it has prevented me from attending Church. Now, those who “knew me when” know that my favorite place to be was and is in Church. The Ol’ Curmudgeon and I were there for most of the services. Because of our distance from the Church, we usually did not attend Vigil, but were there for everything else.
As we got older, we had to do more “picking and choosing” of the services during Great Lent and Holy Week, and that was most disappointing. After the Ol’ Curmudgeon’s first angioplasty, he was unable to direct choir anymore, and was unable to attend the Liturgy every week – we managed about every other week. Meanwhile, my energy reserves disappeared, and I was diagnosed with fibromyalgia – but we now know what I had was really early RA. I had to leave services earlier and earlier.
As a person who has always been very adaptive – I could adapt to nearly anything – I looked around for ways to retain and grow my Orthodox Christian faith while recognizing my limitations. I found them in books, on CDs and the internet. It has been disappointing to not find help on TV or DVDs, but clips on YouTube are helpful.
What has been most helpful? In addition to the Jordanville Orthodox Prayerbook, the Old (Orthodox) Believer’s Prayerbook has been wonderful. The translations are very beautiful and not awkward. There are many additional prayers not found in other prayerbooks. Another book is Prayers by the Lake by St. Nikolai Velamirovic. This book is also available on-line. The books by Johanna Manley (The Bible and the Holy Fathers for Orthodox, Grace for Grace: The Psalter and the Holy Fathers, Wisdom, Let Us Attend: Job, the Fathers, and the Old Testament, and Isaiah Through the Ages have been of inestimable help. The “Book of Akathists, Vol I and Vol II, from Holy Trinity Monastery in Jordanville is wonderful. I also have the Lenten Triodion and the Festal Menaion by Archbishop Kallistos and Mother Maria. The translations are delicate and euphonious. They evoke the sense of deep joy inspired by actually being in Church. For daily devotions, The Prologue from Ochrid (mine is the early, first edition, in 4 volumes that could be purchased individually – made it easier to purchase) is essential to me. The Menologion-3, A Troparion and Kontakion reader for Windows, with Lives of Saints and daily Bible readings, is extremely helpful when time is short, as is Horos (St. Anthony’s Hours of Prayer), a computer program that pops up on the Liturgical Hours with a Psalm from that service.
I have downloaded many videos from the internet and converted them into MP3s so I can listen to them on my SansaClip (a very small MP3 player) as well as watch them on my computer. I also have converted some of my particularly treasured Orthodox music from my CDs to MP3s to listen to when I’m away, or want to listen when my Ol’ Curmudgeon doesn’t want to listen.
What do I wish for? I want St. Nicholas to bring me (and thousands of other Orthodox shut-ins) live, streaming videos of the Slavic-style Divine Liturgy on a weekly basis. I often watch the GOA live, streaming video of the Divine Liturgy, but my spirit longs for the Slavic music and English. None of the CDs really suffice for this.
Of course, I pray for healing – both for my Ol’ Curmudgeon (who isn’t doing real well energy-wise following his third angioplasty 2 years ago) and for me. Until God does that, we continue to adapt. But we are aware that, like many other people, our “golden” years are much less than “golden.”
After I was trapped in the bathroom (couldn’t turn the dratted handle because my hands were flared, couldn’t use my forearms because of the angles involved), my husband had lever handles installed house-wide. It was well worth the cost. On really “difficult” days, I put a “pull” on the handle and Emmy opens it for me!
Himself and I also planned out and had a new kitchen installed that lets me sit to do most of the things I need to do, and is big enough for him to do what he needs to do – finally! (My friend, Denise, in Savannah, would LOVE this kitchen!) The renovation was trying, but we survived. Energy-wise, we are still recovering – 2 months after completion.
We are gradually re-defining ourselves, taking our physical limitations into consideration and adapting as much as we can in a positive manner. RA continues to eat into my joints, and makes various tasks and activities more difficult.
We accommodate to our handicaps and make each day as good as we can make it, thanking God for His grace in giving us the ability to adjust, improvise, adapt, and accommodate (if not overcome) our handicaps.