Have I been judgmental of disabled people? I never thought so… but I’ve never been one either. Until the past few years. But I’ve been judging myself for my lack of ability to do anything. I’ve berated myself for my laziness and motivation, kicking myself… trying to make my body do what it used to… and it just doesn’t listen!
I have gone from an independent person, to an invalid. Basically that is the deal. And I’ve fought it…. to no avail. My body has not cooperated.
Whether this ends up being chronic fatigue or something else, I have not been able to do much of anything for nearly 2 years now. It has been longer, but the worst of it hit right after my father’s death the end of June, 2008. I am just beginning to be able to do some things if I rest up for it.
I’ve never been skinny… far from it… but I have enjoyed a very independent life. I’ve been able to do what I’ve wanted. I’ve never been in perfect health or shape… but I’ve always enjoyed exercise and weight training when I could fit it into my life. Right now, the old ladies in the arthritis swim class can kick my butt… I can’t keep up with them. Aaargh! And they go 3 times a week… I can barely handle once, because it takes me a week (no joke) to recover for the next class.
I was even too wiped out to keep up on here for most of it. It has taken everything I have to take care of my 4 kids… and even then, only the basics! I miss you all…
I’m seeing a new doctor, a neurologist, who is doing a slew of tests… so we’ll see what it comes down to. But I finally have to accept the fact that for the time being, this body has stopped working the way it is meant to work. I hope it starts again soon, because I am feeling just enough better now to be BORED SILLY!!!! And really depressed.
“Let the rain kiss you. Let the rain beat upon your head with silver liquid drops. Let the rain sing you a lullaby.”
~ Langston Hughes
It is pouring with rain in the city tonight and to hear that drenching sound is to have my spirit refreshed. After the humidity of the past few weeks, it is so good to have cooler nights.
I’ve loved nights like this since I was a little girl, when I would sit with my father on the front stoop, licking an ice block and thinking there was no one cooler than my Dad. I sat out on the balcony tonight thinking about him. His 71st birthday would have been last Tuesday. I miss him on when it rains, but I’m glad of it because it means I won’t forget him.
Rain is such a refreshing thing: the ground gets a good water, the dams hopefully get their fill, and the smell that rises up from grass is a potent summer memory.
It’s also an opportunity to rest. The past few weeks have been incredibly busy and on nights (and days) like this I want to snuggle up with a book and exert no more energy than I have to, maybe spend some time fixing stuff around house neglected during my working week.
Lately my home has looked somewhat dingy, just because I’ve not had the energy to clean it often. Often when I finish up work for the day, the choices are make dinner or clean up. Dinner comes first, and I tackle the clean up in the morning when my hands have eased off.
It’s been five years since the RA was diagnosed, 2 since the fibro. I realised the other day that I don’t remember what it’s like to live without pain. I was talking to a girlfriend about it (she has lupus) and we were discussing how different life is when you live with chronic pain.
She has had to give up work to ensure she can care for her young son, and she said, ‘I don’t envy people who have to work and run a household when they have chronic health problems. My choices are simple ones because I have a wonderful, supportive husband who knows what I need even when I don’t. And my family are brilliant at being there when I need them. Not everyone has that – I’m grateful for it.’
Sitting out here in the rain is meditative, which clears a calm space in my head. The visit with my friend had initially made me a little envious that she had such a great man in her life who supported her and such a close family. It got me to thinking about how fragmented my own support system is here, and the downside of independence being that often my relationships have been rooted in the knowledge that I will move on at some point.
So the question begs, when you can’t move on from chronic illness (even though you can manage it well), how do you develop an accepting, compassionate relationship with it?
Well we collaborate more or less devaluation I hear a few of you believe that family that are sick but always thinking negatively. If we would have in support of a while more apprehension attitude towards family that suffer from depression, there should already suffering ago.
A neurotransmitter test is the best way to identify and correct neurotransmitter imbalances before they become authoritarian enough to cause symptoms such as Depression, Fibromyalgia.
Increased risk in support of depression and suicide is much publicized but probably bloody.
For several patients it is mildly annoying, in support of others it can be very distressing, withdrawal and depression and suicidal ideation.
There are a number of reported suicides and suicide attempts in people taking isotretinoin; however, the connection between isotretinoin and suicide or depression is not known.
Removing buffalo hide layers to halt wrinkles or alternating depressions is an high-spirited way to regain smoother, more youthful looking buffalo skin.
This approach is even more useful in treating depression caused by thyroid dysfunction.
If depression is accompanied by EDS, antidepressants with activating merits (eg.
In Reference to
Depression, Elaine Fantle Shimberg, 1996
Children of the Great Depression, Russell Freedman, 2005
How to Heal Depression, Harold H. Bloomfield, Peter McWilliams, 1996
If your adolescent has depression or bipolar disorder, Dwight L. Evans, Linda Wasmer Andrews, 2005
Depression, Steven Richards, Michael G. Perri, 2002
Depression, Edzard Ernst, 1998
Depression, Markus Gastpar, 2002
Approved Links Depression Living with chronic depression Indianapolis Weight Dr Counseling and Psychological Services Depression Atypical Depression Chronic Depression
Depression Problem what people can accomplish with it is filed under Depression.
Parenthood is enough of a challenge when you’re healthy, and with an illness like fibromyalgia or chronic fatigue syndrome, it’s especially difficult. I know it’s something I struggle with every day, and a recent comment left by a reader put our common struggle into words really well:
“I still feel like I’m letting my kids down because I’m not able to do/be/have enough energy to give them everything they need. But at least, I guess, they’re learning that when Mom says in answer to, ‘Can we go/do…….?’ ‘It depends on how I’m feeling’ really means just what it says. I try to say ‘yes’ some of the time for little things and make sure I’m able to follow through, but I feel like I’m saying ‘No’ constantly.
I’ve lost many so-called ‘friends’ because of my inability to make plans, but it’s with my children that I *really* feel guilty.” -A.
Like her, I try to say “yes” and give my children fun times, but unfortunately they have to settle for “I’ll try” far too often.
I’ve said before that we have to learn to accept certain things, and this is another one of those things. It may well be the hardest one to accept, though, because we all want to give our children so much, and it’s hard to think about them missing out on meaningful experiences because mommy or daddy is sick.
While I can’t always choose fun activities for the kids over things like laundry and housework, I do put off the mundane now and then so that I have the energy. I also look for things that they can enjoy that are also low-key for me — a play area at a park or inside the mall, a children’s museum we have in town, places where I can sit and watch them. My kids are also lucky enough to have a dad who’s great about taking them to do stuff while I stay home, or who involves them in household projects and makes it fun.
I don’t know that any of us can ever truly get past feeling like we’re short-changing our children, but I think kids with chronically ill parents probably do learn some valuable skills. My kids have had to be especially self-sufficient and learn to entertain themselves. Having seen kids whose parents do every little thing for them, I’m proud that mine are able to do so much for themselves — and you know what? They’re proud of themselves, as well.
My kids have also learned early that illness is just part of life. They’re very compassionate, and they aren’t uncomfortable around sick or injured people. They’re at the doctor’s office with me enough that it’s not a strange or scary place for them. They’ve even seen acupuncture and cupping performed. I do think it’s possible, however, for kids who are around chronic illness to worry too much about their own minor illnesses and bumps and bruises — that’s something we’re working on with my son.
In some ways, I think it’s been easier on my kids that my fibromyalgia developed when they were little — my son was 4 and my daughter was 1.5. They don’t remember the year I spent laying on the couch in excruciating pain, and they don’t remember when I was healthy. This is just how mom is to them. In my forum, we’ve talked about the differences in how kids react based on age, and it seems like teenagers have the hardest time. That makes sense; they’re going through major changes already, and then all of a sudden a parent can no longer fill the accustomed role. That can create a lot of insecurity. No matter the children’s ages, though, family counseling might be something to consider, so that everyone can work toward acceptance of the situation.
I think we need to remember 2 things when raising children while living with a chronic illness:
1. We cannot judge our parenting skills based on other people’s expectations, and 2. We need to be honest with our children.
I know, number 1 is easier said than done, but it’s crucial. It doesn’t do us any good to beat ourselves up over what we can’t do. I’ve had to ignore my mother, who tells me I “just can’t be on the couch all day” when I’m home with my daughter. It’s easy for her to say that from 670 miles away, when she’s still has the energy at 64 to babysit my niece and nephew, but what can I do about it? Some days, it’s all I can do to provide basic meals for my family, and if I don’t rest in between I won’t even be able to do that. I have to focus on the basics, and anything beyond that is a bonus. Martha Beck, who’s now a life coach (you may have seen her on Oprah) and fibromyalgia advocate says she raised her children from a king-sized bed. Do what you can, and make sure they know they’re loved. That’s all any parent can do.
As for number 2, I think it’s important not to underestimate our children. Now 5 and almost 8, my kids can tell you a lot about anatomy because we’ve always explained as much to them as they could understand. They know I have limitations, they’ve seen what happens when I do too much, and they rarely seem upset when I say, “I can’t.” While just saying that makes me a little sad, I have to wonder if it’s not a good lesson, in a society where instant gratification is the norm.
How has your illness impacted your parenting? How has it effected your children? What has helped? Do other people give you guilt trips over what you can’t do? Leave your comments below!
Article source: Being a Parent With Fibromyalgia & Chronic Fatigue Syndrome
Further Reading
Living with Fibromyalgia (Overcoming Common Problems) by Christine Craggs-Hinton
The Fibromyalgia Handbook: A 7-Step Program to Halt and Even Reverse Fibromyalgia by Harris H. McIlwain and Debra Fulghum Bruce
Fibromyalgia for Dummies by Roland Staud MD and Christine Adamec
Foods That Help Win the Battle Against Fibromyalgia: Ease Everyday Pain and Fight Fatigue by Deidre Rawlings
Fibromyalgia: Simple Relief Through Movement by Stacie L. Bigelow
Chronic Fatigue Syndrome (The Facts) by Frankie Campling and Michael Sharpe
Chronic Fatigue Syndrome for Dummies by Susan R. Lisman M.D. and Karla Dougherty
Joyful Recovery from Chronic Fatigue Syndrome / ME by Sasha Allenby
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Not too long ago I made a comment, in passing, that I have yet to earn any awards for my blogging efforts. Truth be told, I don’t really think I deserve any awards for my blogging. My posts are pretty splotchy as far as consistency goes as I am kind of scattered about with my time and commitments. My family, my passions, and my part-time job keep me away from indulging in my writing as much as I would like. But, as I visit other blogs, all very good ones, I can’t help but admire the badges and awards posted proudly on their pretty spaces. It feels good to be recognized, doesn’t it?
Well, today I received an unexpected and most delightful gift, that certainly put a smile on my face. A fellow blogger and individual who also happens to live with chronic pain surprised me with the gift of The Fabulous Sugar Doll Blogger Award!
This is such an act of kindness on behalf of the giver, more so than I think they could even know! I am just joyful about it, it is such a warm fuzzy kind of feeling. So, it is with receiving this gift that I am also given the opportunity to share it with others. The rule goes that I must share 10 things about myself in this post and then spread the love with a handful of other bloggers, so here goes…
1. I am a hopeless romantic. You’d never guess it, because I frown upon most kinds of romance movies and the incurable disease of romanticism that they promote. I refuse to go see most… I think it is mean, to give our fragile minds the thought that movie romance actually exists, hmmpf! I don’t like sappy stuff so much, in regular life, but when it comes to poetry, art, or music… (oh wait, maybe flowers and jewelry, too) I am all sap. Romance has been infused, somewhere along the way, into my blood.
2. I can get along without (well, without name brands, etc)…I don’t need fancy stuff to be happy, but I secretly would LOVE to live extravagantly. I know, I know, it goes beyond all reason, it doesn’t even fit in well with my desire to be more aware of our environment and to live “green”, but it’s horribly true.
3. I can’t believe I am admitting this, but … I love the Jonas Brothers! Ha, I said it. I have followed the band with my 10 year old daughter, since they were just getting their start, and I just can’t help myself now. I think they are adorable and I truly do like a lot of their music. They get me pumped up and I have a great time listening to their music with my daughter.
4. I love my children with all of my heart, all of it. (This should be number one on the list!) They are so amazing and beautiful and just the most miraculous things to have come into my life. Because of them, I can find purpose when I feel that I have none. But, I often wonder if I am a good enough mom. It comes with the territory I guess…but I do sometimes wonder…
5. I am terrified of Statistics, as in the college course. I am approximately one semester shy of completing my Bachelor’s degree, but I have hesitated, in large part, to complete it because of this one coarse…”Psych 300: Psychological Statistics”. There have been other obstacles as well, but the biggest one between me and my degree is that one single course. It has held me at bay for 10 years now. I think it is getting close to time for me to face my fear, don’t you?
6. I am pretty introverted at this point in my life. Once I open up and get to know you…no longer an introvert. But I don’t like big groups, I much prefer one on one conversations and small gatherings. Large groups are very uncomfortable for me. I’m working on that.
7. If I could listen to live music (good music, of coarse) every single night of the week I would. That would really be the best thing ever!!!
8. I don’t like the cold. I want warmth. I want scenery. I want SUNSHINE.
9. I am afraid of never feeling “normal” again. I am afraid of failing at my goals to become more physically fit and to be well, to be free from fibromyalgia and mental health issues. I am afraid of my “flaws” haunting me forever… and I am afraid that I am my biggest obstacle.
10. I am a dreamer, I have some big (and some little) dreams inside my tender head, many of which I truly hope to realize. Dreams are good, so I will hold onto them.
And now the time to award the Fabulous Sugar Doll Blogger Award to other wonderful bloggers:
Marie @SpreadingJoy “Spreading Joy Corporation“
Jamie @fightingdepression “Fighting the Darkness”
Teia @vinamist “Just Breathe“
Kelvin @kelvinringold “Ramblings Lite” ( I hope he doesn’t mind being called a Sugar Doll, ‘cuz he sure is one, albeit a masculine one)
These are just a couple that I could come up with tonight, all special and unique. Every blog I seem to come across has something magnificent to offer and I am blessed abundantly by those who share through their writing. Please forgive me if I did not mention yours, because You deserve an award, too! =)
How many articles can you find if you google sitting increase heart disease??? WOW too many. Egoscue Portland listed just a few: All the sitting you do is killing you, new research says
Bits from the blog: The studies found for every hour spent watching TV (sitting still) was associated with an 18% increase in heart disease deaths and an 11% increase in deaths overall. People who watched TV at least 4 hours a day were 80% more likely to die of heart disease than those who watched less than 2 hours a day. By the way, Americans watch an average of 5 hours of TV a day.
This is what Pete Egoscue has been saying for years: humans are build to move and move constantly. In The Egoscue Method of Health Through Motion Pete says…
Take a moment to read this whole blog : All the sitting you do is killing you, new research says
Pacific Laser Therapy Center’s smoking cessation therapy consists of three sessions. From my experience most clients require only one session (I have treated many clients successfully with a 92% success rate however since brain chemistry and initial response is idiosyncratic the protocol is three 60-90 minute sessions to quell any lingering physical withdrawal.
The first session consists of extensive intake (addiction inventory) where I investigate the “who,” “what,” “when,” “where,” and “how” per their smoking behavior. I literally walk through an average day with a client and craft a “new daily life schedule.” This schedule empowers the client to create a new life routine which is very powerful in quelling the self-destructive addictive tendencies of the nicotine addict. I also teach my client powerful and practical CBT techniques which assist the client in “releasing” the cigarette (or negative or troubling thoughts or feelings such as doubt, etc) thought. The laser therapy session in itself only takes 25 minutes to complete.
All three sessions consist of: cold laser session, CBT-like “releasing therapy,” beta wave relaxation. Every client takes home a very informative and easy to follow-up aftercare kit as well as a positive affirmation CD in a cool tote bag.
I haven’t been seriously depressed for about a month now. The Pristiq made me very-very-happy at first which lead to a minor burnout, but now everything seems to have stabilised and I haven’t had any strange thoughts or hallucinations or compulsions. Admittedly, I have been breaking down into hysterical tears & contemplating overdosing or stopping all my medication completely, but this isn’t depression–this is me being overwhelmed by everything and completely at the end of my tether with all things medical.
I have a swelling at the base of my spine.The swelling has gone down a bit now, but it’s been very painful and hot to the touch. I can’t bend properly. Sometimes I can’t walk properly because the stiffness radiates out to my hips. I’ve had stiffness and pain and spasms in that area for seven months, but this swelling isn’t likely to be fibromyalgia as that doesn’t cause inflammation. However, I’m not actually sure what it is and none of the options appear to be nice ones. When the first words out of your GP’s mouth are ‘Any history of ankylosing spondylitis in the family?’ you kind of want to just stab yourself and have done with it. (Incidentally, I almost died of shock when my mum said ‘oh, your granddad has that!’ yesterday. Turns out he has spondylitis in the neck, not ankylosing spondylitis–but omfg, almost had a heart attack.)
I’ve had an X-ray and an ultrasound done. They were both incredibly painful experiences, but the results were completely normal. So yay, I don’t have a tumour? And yay, my bones haven’t fused together? That’s something at least. But I’m still waiting for the results of my blood tests to see if my rheumatoid factor has gone up or if my white count is elevated as I could have a spine infection. My rheumatoid factor was normal last time I had the test done, in June, but apparently you can be symptomatic for a while before things show up in the bloodwork. Also, there is a family history of rheumatoid arthritis. That being said, the x-ray didn’t indicate any bone deterioration so maybe this is just a soft tissue problem.
So tired with all of this. I can’t face the thought of seeing any of my doctors. I burst into tears last time I saw the endocrinologist because she was talking about radioactive iodine therapy again as my thyroid just WON’T give up, and I can’t deal with that. I just can’t. I just can’t be bothered any more. I’m sick of things going wrong. I’m sick of being disappointed when tests come back normal–it’s not that I WANT a horrible disease because I don’t. I just want to know what’s wrong with me so I can fix it and move on.
Today, I received a call from my doctor, telling me I have a deviated septum and thats why I have been on the receiving end of a barrage of sinus infections. Due to having fibromyalgia (short definition Im in pain everyday; long definition click here lazy ass), I have to get MRIs regularly so my doctors can check out my joints, muscles and other stuff that I dont really understand or care about because bottom line, I still hurt every damn day.
Anyway, a combination of poor bone structure and breaking my nose 22 times while I was in high school (yes, even as a thin teen I was kluzty and accident prone), caused my septum to veer off course. It began smoking and abusing over the counter cough syrup, told its parents to shove MIT he was joining a motorcycle gang and would backpack across Europe.
My doctor suggested putting it in some kind of Christian reprogramming camp, I believe the medical term is “septoplasty”. Being a big ol wuss I am avoiding surgery like the plague or those little demon girls selling thin mints outside of Randalls.
before and my nightmare after
My doctor assures me that I wont look as plastic as Ashlee Simpson after the surgery, but Im not sure I can trust a man who always matches his tie with his socks.
And in before you assholes tell me “ASHLEE IS GORGE-OUS!!!!” I never said she was ugly, I said she looked plastic and frankly unnatural. Call me crazy but I find the beauty in the flaws.
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