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Archive for the ‘Fatigue’ Category

A member of our local RA Support Group, and friend to all of us in the group, died last week – of complications of Rheumatoid Disease. Just like Glenn Frey did a few months ago.

She repeatedly had bronchitis through the winter, then, just as spring was in full bloom, she developed bronchitis again, but this time antibiotics didn’t help. She was hospitalized, then developed pneumonia. Two weeks later, she died.

Some would say it was complications of her medications – all those immune suppressants she was on – that were the cause of her death. But those of us who fight the same fight know: it was Rheumatoid Disease that was the cause.

Our immune systems are broken. Our immune systems have gone bezerk and are attacking our own tissues. Although the joint tissues are the most noticeable, Rheumatoid Disease affects the heart, lungs, eyes, ears, and kidneys, not to mention arteries and veins. It gives the patient overwhelming fatigue and brain fog. In fact, Airways Abnormalities May Represent Preclinical Rheumatoid Arthritis! This was an astounding piece of information to me when I first read it. Rheumatoid Disease may very well start in the lungs! [RAWarrior.com: Preclinical Rheumatoid Disease – There Are No Joints In The Lungs]

According to a recent study at Harvard’s Brigham and Women’s Hospital, “RA is associated with a 40 percent increased risk of death.” [RAWarrior.com: Rheumatoid Arthritis Mortality] My own mother died of complications of Rheumatoid Disease (Arthritis) after fighting the illness for 15 years. She was only 59 when she died. Her grandchildren hardly got to know her at all. She was 15 years post diagnosis.

My friend had had RD for many years, and had the deep love of her only child – a daughter, who is totally devastated. I, too, was my mother’s only child, and was devastated by her death. Due to modern treatments, I have lived longer than I expected to. But the complications of the medications and treatments are taking a serious toll. Even though they are slowing the course of the disease, they are quite capable of killing me. So I see my Rheumatologist regularly, and inbetween times I see my Primary Care doctor. Then as joints give out, I have orthopedic surgeries – two so far and a third looms on the horizon.

We MUST find a cure for this disease! It robs us of function, family, friends. It ravages children, adolescents, mothers and fathers and grandparents. It is a leading cause of disability and loss of employment – not just in the USA, but across the world.

Rest in peace, my friend. You are no longer in pain. You are no longer crippled. You are free of this VILE disease that robbed us of you. God bless you and make your Memory Eternal.

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{RA Warrior is having a Blog Carnival to promote awareness of Rheumatoid Disease – and Rheumatoid Awareness Day [February 2 each year]! This is my entry.}

I think one of the things I was unprepared for when I developed Rheumatoid Disease (Rheumatoid Arthritis) was the fact that so many of the people I encountered in life and online had totally different experiences with the disease. It took me a long time to learn and even longer to internalize and REALIZE – Rheumatoid Disease manifests itself differently in each person!

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“Some people experience constant pain; some have a series of “flares” and periods of lower disease activity. Symptoms can vary greatly from day-to-day.

“Rheumatoid Disease is different in each person — and even in the same person over time.” [Kelly Young, http://rawarrior.com/ ]

A “mild” case of rheumatoid disease is just as valid as a “moderate” or “severe” case. It was interesting to me to look at ads and see people with related autoimmune conditions who were on Biologic “X” or Biologic “G” and were doing well. I thought I was being held back because we couldn’t afford the co-pays. But there was another factor I learned about: RD-FACTS-2-300x223

Even if we could have afforded for me to be on one of the then-available Biologics, there was LESS than a 35% chance that it would have worked!

My RD is different. I am seronegative and do not have a lot of the so-called “typical” manifestations (gnarly hands) of RD. Because I am seronegative, I don’t qualify for Clinical Studies.

My over-riding symptom is massive fatigue and lack of “spoons.” I have a good bit of pain, but my pain doesn’t “stay” in place – it moves about. There are things I can no longer do because of “pain,” but I try to ignore the pain. It does work part of the time. The pain differs daily – even hourly – as do my disabilities. I see people who are totally worn down and not able to do so many things that I can do. I try to remain thankful and to pray for them.

“My” Rheumatoid Disease frequently looks like this:

I am Tired

This is my life – but with pain superimposed. Hands, wrists, feet, ankles, knees, hips, elbows, shoulders. neck, back. But many people have more pain than I; and many have more fatigue than I.

We are all different. We each experience Rheumatoid Disease in different ways. I can no longer cut my meat; at times (like today) I can’t even cut my fried eggs into bite-sized pieces! I had to ask Himself to do that for me. He said, “Certainly!” After 38 years of marriage, 37 of them with my gradually declining abilities, he still is cheerful about helping me – dress, undress (he likes that part! 🙂 ), brush my hair (now nearly waist length), cut my steak, and so on. He still says, “Certainly!” And I get to bask in the fact of his devotion and love!

I do at least try to cut my steak (and fried eggs), I do try to get dressed and undressed by myself, and I do try to take Warrior (great name! Appropriate!) out for his “constitutionals” 2 or 3 times a day. If I cannot, Himself does it for me.

My RD may be different from others, and it may change from day-to-day or hour to hour, but it’s still RD. Yes, like the rest of those of us with Rheumatoid Disease, I AM a Warrior!

{Dear Readers – please remember to Help Kelly and Roo!}

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“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.

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Those of us with physical disabilities find we are deeply fatigued more frequently than others do. For several types of disability, fatigue is the first thing you will notice. Some of those are fibromyalgia, chronic fatigue syndrome (CFS), rheumatoid arthritis (RA), lupus erythematosis (LE), and other autoimmune-related diseases.

Some of the things people do to Improvise, Adapt and Overcome fatigue:

The first thing the professionals tell us is to “reduce stress.” That’s easy to say, but many people have told me being told that doesn’t help. HOW do we reduce stress, when there are bills to pay (that are ‘way beyond our means), the spouse isn’t supportive at all, the family thinks we are goofing off, and our friends think we are hypochondriacs – not to mention our boss doesn’t understand and doesn’t want to understand our limitations. Most of these stressors are beyond our control, so just being “patted on the back” and told to “reduce stress” doesn’t cut it.

We can reduce the effects of external stressors, however, by using any number of coping mechanisms: giving ourselves permission to take 30 minutes to rest and to use the relaxation technique(s) that work the best for us. For me, it is progressive relaxation and light meditation. There are the times we have to “suck it up” and force ourselves to go onward, to accomplish tasks, to deal with the stressors head on. Once we have done these things, however, it is important to take the time to rest and regroup.

Getting enough sleep is of particular difficulty for those with pain. Fibromyalgia involves a sleep disorder – the less sleep, the more pain; the more pain, the less sleep. RA, other immune-arthritis, LE and other conditions involve pain. Back or neck injuries, regional sympathetic syndrome, and other effects of injuries involve pain, also. Medication(s) may be needed to assist – with getting to sleep, with controlling pain. Letting ourselves accept that may take struggle and time, but it is an acceptance you may have to come to. In my own life, there are days when I take pain pills and the rest of the time when I don’t. Sometimes I allow myself to experience the pain, other times I don’t. It depends on what is going on. Each individual must make his or her own decision about pain meds.

Sleep hygiene is something else. Before using sleep meds, most of us try a number of things in order to avoid medications. And there are many things that do help.

A bedtime routine that increases relaxation will help. Any routine that is calming to you is helpful. Things other people find relaxing include aromatherapy (you have to experiment to find the aromas that will work for you), a warm bath, particular music, a sleepmask, something to muffle extraneous sounds, pillows to support aching limbs and joints, a cuddly stuffed toy, cool packs or warm packs, Biofreeze or other rub, and/or a massage from a significant other.

Use of herbal remedies such as Valerian Root

Use of over-the-counter sleep aids such as Benedryl (25-50mg).

Exercise during the day – both aerobic and stretching, perhaps some strength exercises 2-3 times a week.

Another medical recommendation is exercise, and swimming is at the top of the list for those with joint and muscle disorders. That’s all well and good if you have your own pool that you can heat to your need! But swimming at most neighborhood or park pools will only “seize” up muscles and let them become even more painful. Some with arthritis will find the coolness to be bad for their joints. Finding a therapeutic pool is problematic. It may be impossible. For those with fatigue on top of their muscle and/or joint problems, there are the difficuties of getting up the energy to get dressed, pack the swimming stuff, get in the car, drive to the pool, bring the swimming stuff in, change into swim suit, do the swimming exercises, get out of pool, shower, change clothes, pack up swimming stuff, get in car, drive home, unpack swimming stuff and put into the washer, start washer, collapse. For us chickadees, did I mention doing “things” to our hair?

I have no answers to the swimming conundrum because I haven’t found the answer myself. Any suggestions out there?

Another thing the docs tell us is that we have to learn to “pace” ourselves. We do need to do this, but life has a habit of crashing in on us from time to time. How can we “pace” ourselves when we get into a crunch? Well, to my knowledge, we can’t. Once again, we have to “suck it up” and force ourselves to go onward, to accomplish tasks, to deal with the stressors head on. Once we have done these things, however, it is important to take the time to rest and regroup. THEN we can begin to pace ourselves again. Pacing yourself means striking a balance between rest and activities. Look at the activities before you. Determine which should be done in the morning and which should be done in the afternoon, and which in the evening. Rest after each activity as long as you need to. If you need to take a full day after a series activities, then do so. Don’t let anyone make you feel guilty about it. Simply point out that your body needs more rest than their’s do.

The other thing we hear from our docs is really good advice for everyone: have a healthy lifestyle. that means eating well, drinking plenty of fluids, not smoking, not drinking more than 2 oz of alcohol a day (1 beer, or 1 glass of wine, or 1 mixed drink). Regular exercise of some sort is recommended, and a hobby or career that you enjoy and find fulfilling is important.

Comment back with your hobbies. Mine used to be woodworking, but now it is surfing the internet for funny or weird things that will make me laugh. I know someone with RA who makes jeautiful, individualistic jewelry and donates part of the price she charges to an RA awareness group.

For chronic fatigue, there is little that science has found to help. An expensive drug called Provigil has been used with some success in some people, but does not make us feel “normal” all the time. As fatigue is a component of depression, antidepressants may help with that, although it won’t cure the overlying chronic fatigue problem. For pain, your doc may prescribe Acetominophen and NSAIDS. If you have sleep problems, your doc may prescribe sleep medications (or, you might try over-the-counter sleep aids such as benadryl, Valerian Root, chamomile, tryptophan, Kava Kava, Hops, passion flower, California poppy, Skull cap, catnip, St. John’s Wort, and melatonin. SAMe has been used to treat chronic fatigue, and is said to promote healthy sleep cycles.

Some herbal blends for sleep are AmbeSleep, Lunexor, and RestAid. Some people like one better than another. Alteril is a mixture of valerian, melatonin and tryptophan. Many people have had good results from this. Each person will have to do their own research as owha woks best for them. Just a note of caution – be sure you let your doctor know what you are taking. There may be some interactions with medications you are prescribed.

If you have other remedies, please let me know! Fatigue is such a common problem among the auto-immune and pain-related disabilities – we need to find ways to fight it!

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