Wednesday, November 30, 2011

My life with Fibromyalgia

As many of my friends and family know, I have been diagnosed with fibromyalgia and chronic fatigue syndrome. I've been pondering posting about all of this for quite some time and since I just had my worst attack to date over the Thanksgiving holiday, I figured now was as good a time as any. I don't post my family blog on Facebook, but I didn't want to repeat myself, so that's why I'm letting my FB friends in on this post. I'll think I'll do this FAQ style and have a conversation with myself using many of the questions that have been posed to me by family and friends.

Q: When did you discover you had fibro?
A: Just this past summer, but Rob and I have known for quite some time that something is wrong with me. I tire more easily than a healthy person, have had spells of "lazy" for years, sometimes get muddled in the brain, have memory loss, can be excessively cranky, and a host of other issue have cropped up as well. When I read over the immense list of fibro symptoms people deal with, I realized that I've been putting up with some of them since my high school years.

Q: What does fibro feel like?
A: Well, it depends on the person. All fibro patients have a pain or ache all over their body, primarily in the joints, and the intensity of that pain depends on the day or activity. Beyond that, everyone is different. That's why diagnosing and treating it is so difficult. The only test a doctor can perform is a 19 point pressure test (I had pain in 18 of the 19 areas). I have pain in varying degrees, constantly feel tired but can't ever get a good night's sleep, my brain is foggy (called fibro fog), I get cranky, I have problems processing noises in groups, vibrations hurt (which is why I sit where I do in church AND why I no longer attend more than one service on Sundays.) In a nutshell, I feel like a cranky old lady most of the time.

Q: What is your doctor doing for you?
A: Pfft...my traditional medical doctor wanted to put me on a low-dose anti-depressant to help me sleep. I said no drugs. Fibro can be treated w/o meds...it just takes more discipline and a willingness to break outside of the "take-a-pill" mentality of the medical profession today. I have chosen to see my chiropractor instead, who will be doing a whole host of treatments that do not involve drugs. I will have to change my eating habits and I'm sure many other things, but I'd much rather change my lifestyle and be healthier than deal with the consequences of long-term prescription drug use.

Q: How do you know what you have chosen will work?
A: Well, I did a trial run of an anti-inflammation diet and felt better w/i a week. That tells me I'm on the right track.

Q: How has your life been effected by fibro?
A: Right now, I am pretty reclusive. I have a hard time concentrating on conversations so I don't hold long talks with anyone but Rob, who doesn't mind if I fade out. I have to try very hard to pay attention to anyone, so don't take offense if I appear to "check out" when I'm talking to you :) I have had to remove myself from every church ministry I am involved in. I am still an SU demo, as I am hoping that as treatment progresses, I'll be able to handle more business things. God has removed a number of large events I had planned and I'm grateful that He's in control of my business plans. Not what I wanted, but it's so much wiser for me to just do my two classes right now and the occasional workshop. Homeschooling is fine so far and I just shudder to think how hard it would be to try to be a good room parent if the boys were in school along with shuttling them to and from school and helping them with any homework at night. It's much easier to just do their work at home.

Q: How is your family handling it?
A: Matthew and Anna seem to be doing just fine. Ben is having a rougher time of it. He's testing me daily to see how I will handle him, yet at the same time willing to help. My kids are rather independent and probably do far more things at their young ages than their peers, but it's out of necessity. And it's good for them--someday when they are on their own, they will know how to clean and keep house and cook and fix stuff :) Rob is okay and eager to have me back to my normal self. He's working longer hours to help pay for the treatments and is pretty exhausted, but he wants to keep me. The stat that scared both of us is that fibro patients age nine times faster than the average person. Nothing else I heard convinces me more than that to seek treatment.

Q: Do you need any help?
A: I get asked that question constantly, and quite frankly I never know how to respond. I never know from day to day how I will feel, so it's hard to predict when I'll need help. I guess prayer would be the best way to help me right now.

I hope this helps answer the questions that many of you have had about my condition. I know so many people have said, "I have that!" or "I have an aunt/sister/hairdresser with that problem!" And then I usually get advice on how to deal with it. While I appreciate the care behind the advice, again, every case of this is different and everyone responds differently to treatment, so there is no one answer to the problem. And no, there is no cure. I can get about 95% better than I am now, but I will still have problems for the rest of my life. I'm okay with that...I'd just like to keep the bad time to 5% instead of the 80-85% I'm going through right now.

Tuesday, November 22, 2011

First room done!

I am please to report that after 17 days of living in our new place, we have one room completely unpacked! Not sorted and put together to my satisfaction, but there are no more boxes in the boys bedroom...or Anna's, now that I think about it! But her room is still in the sorting process, so it doesn't count :) I took a picture of their room and I will post pictures in a private album on Facebook soon.

My stamp area was actually the first "room" put together, but there is still half a box of office supplies sitting in it, so it is not the winner. I'm very happy with my new stamping area, as almost everything is in arm's reach. All I need is an office chair on wheels and I'd have it all :)

The downstairs is progressing nicely. We have a small pile of boxes left in the living room, a larger pile in the dining room, and boxes waiting to come inside on the back porch. Our hope is that we can get most of it put away while Rob is off for Thanksgiving. We've decided to stay home this year and just work on the house. It's been very slow going due to my physical condition, trying to run our normal lives amidst the chaos, and Rob's crazy work schedule, but we are making progress.

The kitchen, while unpacked, is still a challenge. We have no utensil drawers, so we're trying to figure out the best way to keep all of our normal "drawer" stuff from taking over the counter. My long-range plan is to put a buffet piece in the dining room, but for now it's all in decorative tins :)

Rob and I's room is the least put-together. Our box springs broke, so the bed cannot be put together properly. We also have multiple boxes that remain packed--and quite frankly WILL remain unpacked b/c the room is only used for sleeping :)

So we're getting there, even if it's moving slowly. I can't wait to get out the Christmas decorations and see how great this place looks all dolled up for the holidays!

Friday, November 11, 2011

A Moving Story

We're here and mostly settled into our new home. It's been quite the interesting three weeks as we have worked on this move. My dining room still looks like a box factory and the old house has one day of cleaning left on it, but we're beginning to see the light at the end of a very long tunnel.

We started our move by thinking that we would do things slowly, as our landlord gave us until Thanksgiving to get moved over. (Yes, both places have the same landlord.) We thought our big moving day would be the 12th. The first week we moved nothing but storage items over from our old basement to our new attic. That one week alone showed us two things: This was going to take more effort than we thought AND it was sending our lives into a tailspin. We decided to halt all schooling until we were settled and moved up the big date to the 5th. So as the second week started, we were furiously packing whatever we could and making trips to the new house once or twice a day with the van as full as it could be. We even took our babysitting kids over and they helped our kids get their toys settled into the new rooms. (Their mom gave us permission to put them to work.)

Monday of that week was so awful and stressful for me (partly b/c I scheduled a 31 party for my birthday) that on Tuesday we didn't know what to do. Rob's mom called and he jokingly asked her to take the kids for the week...and she agreed to take the boys from Thursday-Sunday. That was such a huge blessing. While they can be very good workers, we could see the strain on them and the stress for me. Anna was such a good girl while we worked in both places and did get to spend the big moving day with a friend.

This past week, Rob has been working on the remaining things in the old place as well as cleaning it. It has been a bigger chore than expected, partly due to his lack of time during the day and the fact that he keeps finding more things to clean! We're trying to leave it immaculate since the previous tenants of our new place trashed it and it took our landlord two months to clean it up. We just plain feel sorry for him.

I have been trying to get things unpacked here as well as keep up with normal household tasks, but it has been very trying. I have had fibro flare-ups on a daily basis, kids that are wired to deal with, and a dryer that no longer heats. I told Rob not to bother with the dryer until he has the other house cleaned up...I can deal with drying racks and drying some loads multiple times. I have finally caught up with the laundry, thankfully, but it has been trying. I'm looking
forward to next week when Rob and I can work alongside each other to put the house together.

We are enjoying our new home in spite of the stress. The kids have such spacious rooms, I have a wonderful stamp area, and even my bizarre kitchen is working out okay. I will have to take a picture of it and post it here...it is a funky set-up for sure! The house was built in 1875 and our kitchen was created in the 1930's when the place became a duplex. We do have a gorgeous curving staircase and chandeliers in three rooms. I can't wait to get the place completed and decorated!