CFS Warrior: Article on How to Help

CFS Warrior: Article on How to Help

Facebook | My Photos - 1950s

Facebook My Photos - 1950s

My family when I was three years old:)

Happy Anniversary to Jason & Catrina!!

Here's the link to a video in the Waco Tribune:

http://www.wacotrib.com/news/mplayer/m/60689

CFIDS/ME ...a painful and tiring topic...

This isn't a recent picture. It's me and my favorite little boy (my nephew, Kyle... joy & sunshine of my life the last 5 years:) at Jason and Catrina's wedding on June 29, 2007...yay for an anniversary coming up:)

My illness (CFIDS/ME): Life has been very hard for me since I experienced a reprisal of debilitating symptoms 2 l/2 years ago. In addition to thousands of daily, common things that are now a challenge, I don't really feel like taking pics or posing for pics. Probably, others can't see it, but I usually see pain in my eyes, the ravages of my illness in my smile, a sickly pallor instead of that layin'-in-the-sun glow I loved to "work" hard at by basking in the sun, and the general effects the protracted battle with CFS (shorter than the above abbreviation) has wreaked on my posture and body.

I know I might ought to try and give my friends info. about CFS, but a quick google will pull up the CDC, CFIDS organization, etc. etc. Short story is: revolving debilitating symptoms of pain, flu-like symptoms, stomach problems, headaches, etc. etc. There is no proven cure for CFS, and no treatments that work for most patients; CFS patients are usually constantly using a variety of symptom-treating meds to be as comfortable as possible. It's not degenerative, and only one death has been officially attributed to CFS. There are theories that average lifespan may be shortened, but years of research will be needed before we know.

Everyone's CFS story is different because that's just the kind of confusing illness that it is. Here's my story briefly, and I hope I'll be able to blog about my fight with CFS more. I've found some blogs that helped me feel less alone in this, so I'm hoping to encourage other sufferers as well as give my friends and family more information about what we're dealing with...

June 1995: I caught a really bad virus. I know now that I'd also been experiencing slight CFS symptoms before then. I was incredibly sick. Light hurt my eyes, I couldn't sit up, drive myself to the doctor, or even go to the grocery store. For three weeks, I got worse and worse. The doctor increased the strength of the antibiotics, even though it was a virus. A friend recommended a really good diagnostician, and he diagnosed me with CFS even though the definition for CFS involves being so ill for at least six months that you are unable to perform at least 50% of your normal activities. My early diagnosis was a big blessing that most don't have.

I got even worse. The more meds I tried, the more allergic reactions I had which in turn worsened my condition. By the end of July, Mike was trying to figure out who could stay with me full-time so he could work because the fainting spells had become dangerous.

Important fact I discovered at this time: CFS REALLY frustrates doctors because there is little one can do & each individual's condition is so different, that it's very hard and time consuming to work with a CFS patient. So, here's a prayer request: Mike is searching for a doctor to help me manage the symptoms. See how long I've been writing! Argggh...very annoying illness:)

My church had a prayer time for the sick in our church at this time. I was too ill to attend, but I know God intervened because I went from being unable to walk at all without support to being able to get out a little more & resume a few activities. I found a great Dr. (Hi Selena) who helped me get off the myriad of meds I was on that were actually making me worse. Sadly, she's in Texas now, and a gynecologist, so I need another Dr.

Then, in September, I was prayed for (I'd been prayed for many times before, of course)...but anyway, by God's Grace, I was healed and able to be very active again.

For 11 years, I knew I still had CFS, but was so grateful to God to be able to live a "normal" life again...that the symptoms that remained were a welcome relief from being so disabled. I got sick a lot (poor immune system), had pain (but I could pace myself, take BC, rest, etc.) and function through it, had allergies to many meds, and passed out occasionally. Sometimes, people would ask me why I was always so happy and smiling. I'd tell them about my illness & that I knew getting out of bed each day was God's Grace.

Then, on Nov. 1, 2006, I had a HUGE Crash (crash is CFS talk for symptoms that hit you like a truck & make standing, etc. seem like climbing Mt. Everest). I took Kyle trick-or-treating Halloween night, and the next day, I fell into this long-lasting "crash" that I just can't seem to pull out of. It's been 2 l/2 years.

My wonderful husband cooks, cleans, ...everything, never complains, and tells me he loves me and I'm beautiful and his best friend and cheers me if I'm sad and brings me books and movies. Many with this illness are deserted by their spouses and family. I'm so blessed. My children are amazing, supportive, understanding, and wonderful reminders of how beautiful life is.

I miss going to stores, hanging with friends, going to church, ...I miss everything.

CFS is a mysterious illness, and I could get better as quickly as I declined. There are some with CFS who are in worse shape than me...bedridden and unable to speak. I have to be very careful to listen to my body and not overdo in the hopes that I will get better rather than worse.

I miss friends. I've always been so social, but some days, I can hardly talk. I know it's hard & frustrating to visit with CFS peeps because sometimes we're not up to it. I can have visitors, but it's just kind of a hit & miss thing because I might have to cancel or be asleep...I do appreciate the effort though when friends call & come over:)

Here's the big question everyone asks me: "Are you depressed?" (Most CFS patients are depressed either as a symptom or a normal reaction to the above-mentioned horrible symptoms.) There is a high rate of suicide, but numbers are not available.

I feel sad sometimes. I always wish that this illness would go away so that I can resume my full life. I feel bad that I'm missing out on things like visiting my kids, going to the store & buying them a card, taking Kyle to the Zoo, etc. etc. I sometimes feel guilty about that even though I know rationally that I can't help it....it still stinks and I don't like it:)

I just don't feel depressed (without hope) because I have the wonderful aforementioned family, I'm not dying, I'm alive, I can laugh at a good movie, read books, play games on facebook, sometimes do a scrapbook page on a very good day, Jesus is very real and near me, I've had so many amazing experiences in my life and I'll probably get better some day, and my faith is "any life (including my life) is valuable". I've walked through a lot of stuff with God through the years, and I know that my value to Him doesn't depend on what I can do. I even have Mike who lovingly and willingly lives that out every minute of every day taking care of me and putting up with my cat, Zoozi:). My inability to work and earn income puts a burden on Mike, but we're surviving. I know that I'm wealthy compared to most of the world, so I really try to not worry about those things I can't control. Many CFS patients deal with much worse circumstances than me because they were the sole earner before the illness.

I know that many struggle with clinical depression, but I'm just grateful that I don't have to deal with that in addition to all my physical problems. I guess that I felt the need to explain a little in this (maybe my first blog on CFS or maybe my first/last...idk)....because I know friends worry that I'm depressed. I think sometimes people think I'm crazy for being positive. They say, "I'd be so depressed if I were you." I have no response to that:) Do I apologize for my lack of depression? Do they think I'm lying? So sometimes, I try to explain why I'm not depressed, but boy, that's tiring when talking makes me tired & sick:) It's kind of a downer, though, to feel apologetic for my optimism. I "work" hard at being emotionally & spritually content, so I would rather others rejoice with me instead of trying to remind me of why I should be depressed:) I guess I'm hoping that this ramble will help someone and also be cathartic for me. If you made it to the end, thanks for listening:)

So...I'm back at the beach:)

We moved back to Florida Thanksgiving weekend! I'm too ill to go to the beach much, but at least I'm close enough that it's possible to stick my feet in the sand occassionally:)