Friday, October 31, 2008
Afterwards, I was approached by some very nice group members, and we struck up a conversation. There's something about being amongst fellow FM patients that just makes you feel safe and let your guard down. I guess it's because so many of us spend most of our lives trying to pass as normal, healthy people, especially those of us in our 20's & 30s. This is what I've been struggling with, especially since I moved to Orange County. It can be hard work, and very confusing at times, especially if you're the type of person to whom lying, even telling white lies, doesn't come naturally. And even if you are the type of person who isn't that scrupulous, Fibro Fog can really get in the way of keeping your story straight anytime you DO fib.even a little!
So I was talking with someone, and this subject actually came up. They mentioned that they were terrified of letting people in their line of work know about their condition, and I totally understood. At my last full-time job, I didn't even mention it. Even when the owner of my company noticed the unusual slowness and stiffness with which I got up off the floor after helping him hunt down some paperwork, I was vague and played it down. (It turned out his daughter had a similar condition, so I might have done myself a favor by admitting what was wrong. Hindsight...)
And my boss, who I ended up sharing an office with, and was quite close with, didn't know, until the very end, by which time everyone was more than a little confused and concerned by my memory problems, lack of energy, and plummeting work performance, and I had no choice left but to explain.
Social life is another place where things get complicated. If you can pull of working, it's not so hard. But what does one say when Fibromyalgia and/or CFS keeps them from working? The inevitable question in social situations always seems to be
"So what do YOU do?"
Most people I know did not grow up with FM or CFS. For me, it hit in my early 20s, and by then I had a very set image of my future. I wanted to be a career woman, be fabulously successful. I believed that if you just tried hard enough, were smart, worked hard, and had goals, it was all there for the taking, and that was the plan. And as for my ideal mate? I wanted someone who fit that description as well. A relationship of equals filled with mutual admiration. At least, that was how the fantasy was supposed to go...
Therefore, trying to figure out who I was without a job was one of my hardest obstacles to tackle. So I kept going back to work, making myself sicker again, and having to quit,take time off until I couldn't stand not being in control of that aspect of my life, and found myself another job I was destined to fail at once it took its toll on my health. Then I finally came to the conclusion that I was banging my head against a brick wall, and that I had to create a life were there was more to its quality and my happiness than working. It was hard work, but I managed. Slowly but surely, I started to feel like a normal person again, part of the world.
And then I had to move, and leave everything behind.
So here I am again.
Laurie Edwards, in her book Getting Real About Chronic Illness in Your Twenties and Thirties tells of how one of her friends had a similar problem finding her identity after having to quit working, and her therapist told her something very interesting:
"Your life will now become about your relationships with others."
So here I am, having to start all over from scratch, it seems. And when you meet normal (i.e., healthy) people, it's really hard, first of all, to decide what to tell them, without totally lying. It can be very stressful just trying to decide what to do, and this on top of making the effort to put yourself out there. Also, if you don't tell them about your situation, then you have to work even harder to keep up the appearance of being a normal, healthy, young adult. (Making the painful decision of whether or not to use your handicapped placard if parking is too far, or risking being seen and found out, for example. Or having new friends think you're a flake for canceling at the last minute. Trying to hide the fact that you're utterly broke...) You have to ask yourself, at a certain point, if it's all worth it. After all, do you really want people in your life who aren't able to accept you as you are?
Is it worth the trouble, with everything else being as challenging as it is?
Of course, if you come clean, that takes some finesse as well. You risk rejection, which could lead to discouragemnt and further isolation. Plus, you have to decide how much information is too much.
In another book I read recently, Living with Fibromyalgia, the author suggests that if you are afraid to let people see that you're ill (which I personally have issues with, I totally panic if I'm in a situation where my illness interferes with my functioning, and I'm around anyone but immediate family or close friends, or not in control of the situation)then you haven't yet really accepted your illness. How's that for something to ponder? I thought it was very interesting indeed. It's funny, I've had near melt-downs over having to be around even extended family members when I was having a flare...yet I have no problem telling them about it! So maybe they were right...I do sometimes feel like I've been busy crusading, trying to get everyone to understand FM, yet on some level, I hadn't fully accepted it myself... not fully...
So, the waters can get pretty murky at this point.
Me, I'm still trying to figure out where the balance is for me.
But for now, it's nice to have those special people in my life, who understand exactly where I'm coming from, and accept me for who I am. Here's to you, my Fibro-Friends!
You are my heroes. Thanks for being there.
Thursday, October 30, 2008
Anyhow, I can't do regular yoga. Even so-called Gentle Yoga leaves me sore and aching the next day. The only classes I've been able to manage are Relaxation Yoga or Yoga for Chronic Health Problems, specifically customized for me.
Still, Chair Yoga sounded a bit silly...But believe me, it's not! You're not seated the whole time, but you do use the chair for support and to modify postures. (Downward dog is one that causes me to pull/strain my hamstrings EVERY time. But the version on this DVD is PERFECT. Stretches, feels good, releases your lower back, and no injury/pain later.
If you listen & follow their instructions, you can literally let go of pain by releasing the tension in muscles. It's really pretty amazing. Not to mention, at the end I'm so relaxed that the modified Child's Pose sends me right into a state of meditation.
I'm thinking of doing this twice a day now!
Off I go!
Check it out:
P.S.~ I've got codes for free Online Rentals, so if you're on a budget but want to check this out, ask me! (I know what it's like to be broke and looking for some relief!)
"...the Partnership to Fight Chronic Disease and two leading political pollsters, Brenda Wigger of Voter/Consumer Research and Celinda Lake of Lake Research Partners, released these and other results of a large poll exploring the attitudes of female and male votes regarding health care and the presidential election.
The survey of 1500 likely voters found that while the economy was the number one major issue men and women care about, health care was the second issue in line, especially for women. As the discussion moved from macro global issues to personal and family issues, health care was the top personal concern, beating out terrorism, energy, Iraq, and so many other issues."
I am lucky enough to have insurance right now, though it could be better. (I have to pay a $2,000 deductible to get any physical therapy, which I'm needing more and more lately.) But I will never forget how two years ago, when I lost my last "real" job, I was sick in bed at my parents house for weeks, fighting bizzare symptoms, mostly bed-bound because even standing up from a sitting position made me almost pass out, and fighting a deep depression at the idea of losing yet another job to my illness, and I forgot to pay my health insurance premium.
It was a COBRA plan, and they were more than happy to be rid of me, so they wouldn't take the payment, even a couple of days late.
So here I was, in a major crisis, having very frightening symptoms (like a pounding heart that actually kept me awake all night, not to mention the other of what I know to be POTS symptoms, but I couldn't go to the doctor. My only choice was the County ER, and that is hell in itself, feeling like that, I couldn't fathom sitting around for 12-16 hours waiting to be seen. Plus, at places like that, when they can't understand what your symptoms are right away, as long as you aren't obviously about to have a heart attack or turning blue, or actually passing out, they send you right back out to the waiting area.
When I saw the documentary Sicko, by Michael Moore, I was astonished at the types of healthcare available in other countries. Canada, Cuba, England, France... I so wanted to move to France after seeing that!
I will never forget watching the part where the British Doctor tells Michael Moore how he actually gets paid incentives for getting people into preventative care programs, getting them to stop smoking or lose weight, lower their blood pressure. Imagine!
And France...imagine living in a place where if your doctor determines you can't work, the government takes their word for it. Here, the Social Security Disability Judges are out to PROVE you can work, no matter what your doctors say. You think, Judges, okay, impartial, right? But umm...they're getting paid by the government to basically deny all but the most cut and dry cases. And Fibro and CFS, are far from cut and dry...so while health insurance companies recognize their validity if using it to deny insurance to someone, they won't always cover treatments because it's easy to debate a new treatment for something for which the cause is not known, and can be brushed off as not serious. And the government readily works the same angle.
Here, the Social Security Disability administration will deny you for not having enough evidence, despite the fact that you can't afford to see a doctor steadily. But isn't that why you're applying for Social Security Disability? Because you can't work, and need MediCare, to get your case better documented and maybe, if you're lucky, under control enough to get healthy enough to get back to work? (And even though I'm lucky enough to have insurance, I haven't always been able to afford my co-pays, or pay the things it doesn't cover. I was lucky enough to get credit from a great chiropractor, the only doctor that made me better a couple years back when I was having those crazy issues with my heart and all that...I saw him 2-3 times a week for months...but the SSA doesn't give any weight to that, because he's not a MEDICAL doctor. Although they legally tell you they will take it into consideration.)
Sicko does a great job of illustrating how all these travesties are going on here in our beloved U.S.A., where most people believe a sick person couldn't possibly become homeless because all their options run out. I was lucky. I had family to turn to at the last minute, when all hope was gone and I'd exhausted all my resources, recourses, and much of the little bit of health I had. I shudder to think how many people out there aren't...
So go rent Sicko if you want to learn more, and here's the link to Laurie Edward's blog for more on the importance of the issue of healthcare.
Laurie Edwards, A Chronic Dose
Her book is awesome, too by the way! Just finishing it up. Very helpful and real, great tips on relationships w/chronic illness, getting through school, and trying to find a career that will work for you. There's a link to the book on the sidebar to your right. She is one wise chicky!
Wednesday, October 29, 2008
by Lisa Lorden, M.S.
"The hardest thing is not to be able to work magic for a friend." - Maya Patel
Chronic illness presents a variety of challenges to relationships at a time when they are needed the most. Some people with Fibromyalgia (FM) feel an ongoing need to talk about their illness and its impact on their lives. At the same time, many people become more distant or reclusive; this is especially true during periods of severe symptoms, because being around others requires energy that is in such short supply. The mere act of having to pay attention, think and respond to someone causes major stress, headaches and other involuntary reactions for them. It might seem as though this person is pushing you away, when in fact, they really are not able to even carry on a conversation during those times. These alternating needs for distance and closeness can be difficult and confusing.
In addition, a person with FM has experienced enormous losses due to illness. Fibromyalgia often affects every aspect of a person's life, causing a decrease in self-esteem. Once strong and self-confident people may feel inadequate and unlovable due to lack of productivity, inability to work or engage in other activities, discouragement about recovery, financial difficulties caused by the illness, coping with debilitating pain and fatigue on a long-term basis, and so much more. Yet the FM patient is not the only one who is suffering. Watching a friend or loved one struggle with an incurable and poorly understood illness often makes people feel powerless and discouraged. But your friendship does matter, now more than ever; and there are many things you can do:
Educate yourself about Fibromyalgia. Read articles about personal experiences and coping. But don't point out how well someone else may be doing with the illness, and don't try to diagnose or even advise them about treatment.
Be patient and caring.
Understand their need for ongoing rest, and solitude at times.
Acknowledge the seriousness of the illness. Validate feelings of loss, sadness, anger, and hope.
Don't expect them to be able to work or even do basic household chores on a daily basis.
Give them privacy and as much independence as they need.
Offer to help in practical and specific ways; such as grocery shopping, running errands, or household chores.
Understand that looking good or trying to be positive doesn't necessarily mean your loved one feels good!
Make plans flexible to accommodate unpredictable symptoms and fluctuating energy levels. Be understanding when they must be changed or canceled at the last minute.
Realize that your loved one may seem "okay" while you're together but then pay an enormous price later for the over-exertion.
Ask questions about things you don't understand.
Enjoy low-energy activities together.
Express gratitude for what the person with FM still gives to you, even though they may not be able to do some of the things they could before.
Reassure them about how important they are in your life.
When you are not sure about how to be helpful, just ask. But don't pressure them.
Be aware of unpredictable mood swings. Try not to take reactions personally that might seem illogical or over-emotional.
Listen while your friend expresses needs, emotions, and thoughts. But don't try to "fix" them, or control their lives for them.
Express your admiration for your loved one's strength in coping with illness so far.
Learn to be perceptive. You don't have to be a mind-reader, but you can watch for signs of how your loved one is feeling, or when they may need extra help and support, or when they may just need to be alone.
Most important to remember is that just showing that you care means more than you could imagine.
"For Those Who Care," CFIDS Association brochure.
"Running On Empty," by Katrina Berne, Ph.D.
"Sick and Tired of Feeling Sick and Tired," by Paul Donoghue & Mary Siegel.
My self-esteem and confidence have suffered greatly, especially because I cannot keep meaningful employment, both because of the unpredictability of my health, and because of cognitive dysfunction challenges. Of course, the government is making me fight tooth and nail for any Social Security benefits.
At 30 years of age, instead of buying my first house, I had to make the choice to move in with my Dad; in a new town, away from my friends and all the vestiges of normalcy I had mustered the last couple of years. And this was a lucky thing, because otherwise, I may well be homeless right now.
I was starting get really down a few weeks ago, and started looking for some books on the PRACTICAL aspects of living with chronic illness. That's when I found this great book:
Living with Fibromyalgia addresses the practical reality of social and psychological aspects of getting on with your life with Fibro, from how to deal with friends and family, to taking care of yourself, energy planning, and work (if you can manage it).
Everyone should read it! Patients, AND families/loved ones. Check it out, hope it helps one of you as much as it has me!
You would really think doctors would recommend something practical like this...I can't help but think of the time I've wasted struggling to figure stuff out that I could have understood and dealt with so much better using tools like this book, and others I have read recently!
Though I've slowed down in my incessant research for a cause and cure of FM/CFS (it's hard to live in the present when you're always looking to the future) this is one I've been wanting to explore for awhile, so finally, after a 4 month wait, after confirmation that I met the criteria and a referral from my rheumatologist, I got in to see a well-known specialist in CFS and Infectious Disease.
(Much of this is a repost from my MySpace Blog.)
Anyhow, instead of just wiping the virus/infection out w/the big guns once & for all, for some reason the infantry got sent in, and they keep dying cuz the infection's got the big guns/tanks, lol.
So he's got me trying a new treatment, which I am taking with a grain of salt, after all the past disappointments, and which I promised not to elaborate about.
If this works as expected theoretically, my allergies will go away too, cuz they're part of the TH2 response...Got activated for no good reason. (I devoloped some bizzare allergies last year, including to the cat I've had for 13 years, and outdoor allergies as well, causing me some serious sinus pain/headaches, the usual, itchy, watery eyes, and really scary asthma attacks. At one point I was so sensitive I was walking down an aisle at the supermarket and my eyes got so watery I couldn't see and looked like I was crying!)
Oh, incidentally, my viruses are in the group called Enteroviruses. Fascinatingly enough I had an awful case of food poisoning a month before I got too sick to work the first time...And that case of the stomach flu I had earlier this week? Fits exactly with the description of one of the viruses I tested positive for, to a T.
Here is a good article about viruses and CFS:
I got this from the NFA recently:
Spas for a Cause
The National Fibromyalgia Association is partnering with The Eleanor Group to raise money to promote fibromyalgia research and awareness by offering a special indulgence at a greatly discounted price.
Day Spa Cards, valued at $300-$600, are being offered for only $65. Each spa card entitles the recipient to four visits at a participating spa in their area. For every card sold, $15-$20 will be donated to the NFA.
Your visits will include:
- Body Scrub or Body Wrap
- Revitalizing Foot Massage
- Full Body Massage
- Spa Facial
To take advantage of this offer, simply click on this link www.spasforacause.com Select the National Fibromyalgia Association from the pull-down menu on the left side of the screen, then look for a day spa that is in your area. (Be sure to read the spa's eligible areas.)
Day Spa Cards also make for a great gift for the holiday season!
I consider myself lucky here. The main symptom of FM is pain. Thankfully, mine is not constant or as severe as some. Mine seems to come in flares. Sometimes it's my whole body. But usually it's a certain body part that acts up for a period of time, sometimes a day, sometimes months.
Comes and Goes
Knees (prone to tendonitis)
Bottoms of Thighs
Whole Body Aches
Waxes and Wanes
Wake up dying for more sleep or feeling groggy/weak/dizzy
Low Stamina (Get tired easily, within hours of awaking)
Exhausted but can't relax
Complete lack of energy - Holding myself up in a sitting position takes effort
See above, plus:
Fluish body aches and malaise (Feeling like I'm getting the flu)
Swollen Lymph nodes
Low Blood Pressure
Pounding or racing heart
Inability to hold electrolytes
Feeling of forgetting to breathe, or breathing takes great effort
Inability to stay upright for long periods of time (standing/sitting) (POTS)
Neurally Mediated Hypotension
Problems regulating body temperature - Overheating/Hot Flashes
Moderate to Severe Cognitive Dysfunction, including:
Inability to recognize people's faces I don't know well
Forgetting what I was saying, or going to do
Trouble following verbal directions
Problems focusing and blocking out distractions
Inability to multi-task effectively
How does this affect my life?
In many ways, as you can imagine. I can't hold a regular, even part-time job. Even school, at this point, has become very difficult. (Though I'm learning that if you are up-front and honest, and keep the lines of communication open, anything is possible. Easier said than done...I don't like feeling like I'm using my illness to get special consideration, but if it well help me finally get that degree...For now I think maybe I just need to rest for a bit.)
My symptoms are unpredictable and can change quickly. One day, I might feel pretty close to normal, the next I might have to lie down most of the day. One week, I might be just fine in the mornings, then for the next month, I may be slower, stiffer, more tired...and if I try and push myself to hard too early, I trigger more symptoms. Then, sitting up for a couple of hours, doing nothing, is about the only chance I have at being able to accomplish something in the afternoon. It's like my body has to adjust to being upright or something...
It's hard to make plans, social, or otherwise. I usually have to rest and save up my energy when I have a social engagement.
Many times I don't feel like talking on the phone, because I'm tired, and that aggravates the cognitive dysfunction (dubbed "brain fog" or just "fog" by many of us with FM/CFS) and I might have trouble putting together a sentence, finding words, space out in the middle of a thought, or end up just being plain tactless, which I'm trying to learn not to be mortified about. Again, something I'm trying to work through and overcome. Part of it is self-consciousness, I guess.
Sometimes, I may get very overwhelmed, and end up blocking out everything but the bare necessities of getting by. I'm working on this though. (I think all the stress I've been under the last couple of years, on top of being sick, has pretty much made pieces out of my ability to deal with stress well; I've been told I have slight adrenal problems too, and supplements I've taken definitely help, so that might be part of the reason.)
When I list it all out like this, it really puts things into perspective, and makes me think maybe I should be a little kinder to myself. I've really spent so much time feeling guilty and feeling like I'm not handling things well enough, like if I just tried harder I could "pull off normal", that somehow it's my fault that I ended up I this mess...
I think about all the movies, shows, and books I've read, even before I got ill, about people being so brave and graceful, even successful, despite their disabilities...and that doesn't help. But I have to remind myself. That's not real life. It's either fiction, or just a narrow glimpse into their lives. Also, I think if you grow up with a disability or illness, I think it's different. You learn your limitations and how to deal with them, you don't expect things that are impossible for you. To reach the age of 23, believing that anything is yours for the taking if you just work hard enough and are smart about things, and then have that all taken away, to have to change your whole outlook on life, who you are, learn that you have limitations, and force yourself to learn to ask for help, well, that's a pretty huge task.
Tuesday, October 28, 2008
Anyhow, I think I have something to share, not just in what I am learning now, but because I have been blogging about FM and CFS for years now on MySpace, and have had positive responses from people in the FM community. I just wanted to move it here, where I can reach a broader audience of people with FM or who want to see what I have to share, both with Fibro or CFS, anyone who wants to understand what life is really like for someone with chronic illness.
Stay tuned for more!