Thursday, January 15, 2015

"Fibromyalgia Brain"

Had a delightful breakthrough moment this morning and felt like I needed to share. I've suffered from fibromyalgia for many many years now, but the aspects of it that have peaked my anxiety I have rarely discussed. Something happens to your brain and your ability to communicate quickly when you have fibromyalgia. I've never really been able to describe this to anyone, hence the problem. But I had a moment of clarity this morning and I felt it was worth copying and sharing here..

I shy away from live conversation as often as possible because I tend to get confused and sound really stupid when I talk. But as long as Theo is there to talk for me as I'm listening I'm good. I hope that makes sense? I often feel like it destroys my credibility when I start to stutter and mumble and not remember words.

It's the hardest thing to have studied persuasion and credibility and then lose the ability to grasp words and concepts quickly. I'm so hyper aware of credibility so the minute I feel myself start to sound stupid I think it makes it worse because I'm so aware of it.

Especially when folks don't understand fibromyalgia. Or even know I have it. Sometimes when these confused moments happen I will actually say, "I'm sorry, I have fibromyalgia and I get confused." But by that point they have already looked at me and judged me to be less than of prime intelligence. It's a natural thing to gauge the capabilities of a person that you're speaking to. It's a perfectly natural part of communication. So it's nobody's fault, its just natural.

Obviously parties and gathering makes me nervous too. I can only hope I can keep quiet and only speak up when I'm confident on a topic.

I'm usually good with the stories, recanting fun events or telling people how I feel about things. I don't know if this is because its more socially acceptable to take a moment to come up with the words to describe this feeling then it is a fact. When it comes to remembering anything even slightly technical I tend to blank. I struggle to remember numbers, definitions, complicated words.  So if I'm talking about my essential oils, for example, I can talk about the ones that have made me feel something but when it comes to remembering how many drops of this how many hours of this, or any of the sciencie part, I tend to slip... In my head I understand it because I've read it but I can't flip it around to recite it again.

My communication becomes really sloppy and the sentence ends up with multiple pauses for me to say something like, "I don't remember the technical term," and by the end of the day I'm not sure I have conveyed anything.

Phew! That is the very best explanation of fibromyalgia brain that I have ever given. 👏

Tuesday, October 7, 2014

Arm Knitting Fun

Having a blast knitting with arms lately. I'm love mixing yarns together. Here are a few cowls I made and a link to one of the scarves in the shop, too.

Check out this item in my Etsy shop

Thursday, September 4, 2014

Blessings in disguise.

I have had fibromialgia for nearly a decade now, and thankfully some really brilliant physical therapists taught me how to handle my fibromyalgia- changing the way the disease affects me a great deal.

The concept of activity mapping has saved my life so many times. The general idea is that you *never* overdo it. When they feel well, people with fibromyalgia tend to try to jam everything that needs to get done into that feeling well time.

The result, nearly every time, is a few days of utter uselessness. Our bodies take longer to recover from strenuous activity. I can remember this exact pattern, I would have a day where I was feeling normal and I would bust my butt to get everything done, and then lay around for 3 days in pain. By the time I was feeling normal again I had so much to do it was very overwhelming. I felt a lot of despair as though I would never catch up with anything.

Activity mapping is controlling the amount of physically challenging stuff you do no matter how you feel. Everyday you decide the few physically demanding things that you need to get done and you accomplish them and stop. No matter how good you feel. For a lot of months this felt extremely unnatural. After all when you're feeling good sitting down and resting doesn't feel right, but the result meant that the next day I could get up and do a half a day of physically strenuous stuff again! And then sit, and do it again the next day. The result was a lot more productive time versus time in pain.

It didn't take long for me to realize that stopping myself from overdoing it meant I could actually get most of my responsibilities done. It also meant better time management. And a lot less horrific down time where pain limited me from being at all useful.

You know what else? That time that I was forcing myself to sit down I wasn't sitting in total pain- I was sitting and I was pretty comfortable. I was working on my hobby of knitting or reading or researching patterns, or recipes on the computer. I was relaxing. And it was very healing.

You know what else was healing? Knowing that I was able to get stuff done for myself and my family.

Of course, fibromyalgia it isn't all about overdoing it and being in pain. There are many other things that affect and trigger fibromyalgia. For example if you eat certain foods, etc. You can still feel awful. But overall, the activity mapping was a winning way to live with this disease.

Today I'm finding what I learned by activity mapping is helping me get through the flu. My house is such a disaster area right now but I am determined to stay planted on my couch sweating out my fever and shutting my eyes to the mess around me. Lol.

A few years ago I probably would have pushed myself to try to clean the house despite having the flu... and I probably would have ended up with something much worse like pneumonia. See how these blessings in disguise sneak up when you aren't even noticing?

Friday, August 1, 2014

Frugality, our style lately.

Its amazing, when you think about it, the things that you can do without. My husband has been retired from the Army since February and has yet to receive a single dime from the VA. He has worked several jobs that meet the needs of his disability,  but nothing has come close to the money he made while in the service. That's what the VA money IS for... to supplement a man who is disabled from serving his country to keep him at a level of normal income despite his limitations. If the VA money had been coming right away like it should have been, (my husband settled his disability rating before he was even discharged, and the paperwork has been sitting there ready ever since), we wouldn't gave fallen behind. It would have been enough.

This week, while checking on the financial hardship claim we submitted 20 days ago- that was supposed to take 10 days- (when we actually got a live person the phone!!), I heard the guy on the phone tell my husband most vets lie about financial hardship. Yes, you read me right: the guy from the VA called my husband a liar. How my husband, my rock, held his stuff together long enough to end the phone call by telling the guy to have a nice night- I'll never know.

My husband has a diasbled foot and shoulder, a bad back,.adjustment disorder, PTSD... more.

We submitted paperwork for govt assistance for food... We got the card and it was ALL sorts of screwed up. First wrong birthday, then wrong social. I guess those are part of your pin or something.  Still have yet to see the replacement. And do you know what we qualify for? $100 a month to feed a family of 4.

We borrowed money from my mom to pay for one car and thanks for the generous donations of friends and family and even strangers we've been able to pay for the other; we still owe my mom A LOT of money back. It had to come to being served papers to go to court to have our car taken for me to ask for help. I've also had the gas company come to the door and threatened to turn my gas off. When we were really stretched to the limits we were buying food instead of paying bills. Paying for a tank of gas so my husband can get to work... One day in particular I can remember that we had nothing left that we had a bunch of metal that we needed to scrap and we literally used our last $10 to get gas to get the metal to the scrap metal place. I kept hoping and praying that the tire wouldn't go flat or something on the way there or worse.

We had friends from church and the boys' school helping us weekly with groceries, which has been amazing. On our current budget generic walmart food and whatever is on sale is it. A long way from the organic choices we were starting to afford before all this happened.

Prior to our current financial situation we were pretty frugal people. Most of our furniture comes from second hand stores and some of it even from the side of the road. I will gladly buy a chair from Goodwill, and three quarters of my sons' wardrobe comes from there as well. They go though the boys section at goodwill with me to find things they like. I've taught them it's always better so save money than spend more when you can get something for less.  When I can, I find what I need at second hand stores- be it clothes or shoes, pots and pans, bowls. We eliminated our cable TV over year ago, we don't spend a drop of money on alcohol. My husband's been sober for 4 years and I have an occasional glass of wine, now I just have to get it from someone else. Ha!

I can't tell you how many times this summer I wanted a glass of wine.

More about me: I've not had my nails done, hair done, hair cut at even a cheap place. I did these things literally once a year when I HAD money. Now. Not all all. When we had money I got most of my clothes at Walmart or the target clearance rack. Thats right, Target's regular prices are too high for me to afford.  I don't buy or wear makeup. I don't even know most brand names of anything. My purses cost me $12 or less and currently ALL have holes in them. I don't soend money on hair products. I use cheap shampoo.

Usually in a spring season a spend money on plants. In the fall, yarn. Not this year. Even then, I spend a fraction of what most of the women I know spend on normal "upkeep"... on my plants.

Let me tell you: not having money to provide basic things for your family causes a level of stress that you can not imagine until you're in it. I suffer from anxiety and depression.  I've spent a lot of this summer asleep. In too much fibromyalgia pain, and such deep depression that I can't bear to be awake. My thoughts consume me with worry and despair and when all the housework I can do (with my physical limitations and back pain) is done, and I've run out of pretty flowers to look outside, sleep feels like the only way to make it through the day.

The nightmares have been awful. I dreamt of every disparity you can concoct. Woken up needing to be held and consoled because I dreamt I lost my kids to illness or kidnapping. Just horrific.

Take a family who lives at frugal and cut their income by more than a third and you have family who really has to make magic happen. We've had yard sales, sold things on craigslist. We haven't eaten at a restaurant in months, and outside of the cherry berry gift card my mom gave us, and a delicious breakfast Theo's mom bought us in early July. Last night we used a gift card and I felt guilty for even that. And of course had nightmares. You can count out summer trips for ice cream.

We've never been a family who takes vacations. Our kids think Super 8 is a fantastic hotel! We road trip to sleep at friends houses or camp. Like in tents. For cheap. 

We don't buy our pets toys, or have money for lawn fertilizer. Can't afford the soda at the gas station, or the snack stand at church league softball.

And you know dental insurance is over rated anyway.

In fact,  I rarely leave the house. My son marveled one day, "Wow, I haven't gone anywhere in like 5 days!" We have no where to go. My weekly outting is church. Maybe walmart once. We can't afford the gas to even free places like the woods or parks. Yesterday we splurged and went to a free zoo and conservatory- an hour away.

Trying to hide all of this from our kids has been exhausting.  We don't dare discuss it in front of them. Our kids are worriers. Ben would chew his nails and panic and Hunter might honestly just cry. But all summer they've heard "no," over and over... can we order pizza?  Can we get ice cream? Can we go to valley fair (we've never been)? When can we go camping again? No. No. No. I don't know.

It's all I can take to fight back tears most days. I think I am to the point where I do cry once a day atleast. I keep reminding myself that worry is a sign of lack of faith, and one thing I know for sure is that I believe in our Lord.  I know he's putting us through this for a greater reason than we can understand,  and someday we'll be in his kingdom forever.

Please keep praying for us. Thank you for listening.  I needed to get this off my chest.