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Monday, July 24, 2017

The Daily Struggle

I'm working on housework today. I follow a daily routine that makes it possible to keep the housework done by doing routines, scheduled breaks, and uses timers so that I don't have to try to do everything at once and burn myself out.

When I have bad days, I only do as much as I am able. When I feel better, I just pick up where I left off and don't try to catch up what I missed while I was feeling bad.

No stress!

Monday, November 14, 2016

My Cats are Making Me Crazy

While I'm typing this my cats are causing havoc in the living room. I really need to knit and calm myself down.Haha
I know I haven't blogged in quite a while. Life has been just a bit hectic lately. I started a clothing closet in my garage at the start of the summer and got it going pretty good by the end of the summer. Things were actually pretty regular and fun and Michelle (my adult daughter) and I had just started going to the gym a couple times a week to swim when our lives were tipped upside down. Michelle ended up in ICU with a severe infection and we almost lost her.

What started as a small abscess turned, in just 4 days, into necrotizing faciitis (the flesh eating infection you always hear about in the news). After 55 days in the hospital and 13 surgical procedures she was discharged and sent home. With me on disability and her part time job put on hold, things got really frightening.

We found out who in our family we could count on and how much we can handle when we put our minds into it. I found out that my pain disability can be put on a back burner when it comes to being supportive of someone else (something I knew previously from my experience of taking care of Randy while he fought cancer, but I forgot). I did have to close the clothing closet temporarily. I managed to keep up the house and still spent at least 50 days at the hospital with Michelle.

She is home now and slowly we are getting our lives together. The finances are still in a disaster, but the routines are getting up and going and I'm actually starting to make some plans for the future. I registered for classes at the local community college and am making decisions on how to make it possible to bring in an income.

While Michelle was in the hospital and I was sitting in her room, I managed to soothe myself with some knitting and crocheting. I made her some bedsocks first, then started some doilies and made some things to donate to the hospital NICU while I was at it. Here is one of the doilies I got done.
I find that in the long run, the most relaxing and mind numbing thing for me to do is doilies. They are challenging enough to keep my thoughts on my work and off of the crisis I'm dealing with, and yet are relaxing because after you figure out the current round, you can go around the doily, repeating the same thing over and over and can let your mind wander a little. Good for meditation.

All in all, we came out of our situation with our  heads held high and our sanity intact.

Friday, May 27, 2016

Friday is here!

Yay! The weekend is here! This weekend is a three day affair. Just John and I will be home, Michelle has a camping trip with her friends from her ecology club at school.

I finished a baby set this week. It includes a baby afghan and three bibs. I made a similar one a couple weeks ago for the same Aunt, who ordered them through my Gnomish Gnits business.

Saturday, May 21, 2016

Catching Up

I know I'm a terrible blog mommy, but I tend to get caught up in my life and forget to update things.
So to update, let me start with my health. First, brace yourselves, but I've done some serious rethinking about my fibromyalgia.
Through some recent situations and friendships, it occurred to me that my past decisions and attempts to get healthier have been unsuccessful at doing just that, making me healthy. I tried to take a different stance.

First, the prevailing thought path for those of us with this disease is that we should hook up with some support groups. Well, I've found over time that no one really knows any more than I already read in medical research sites about what causes fibro or any consensus on how to address it. Even the little medical advice we get is usually dismissed by anyone who doesn't find immediate relief.

The big thing that caught my eye is the argument I hear that fibro sufferers consider their malady as progressive in nature and doctors don't. At first, I was right there with the others. I felt that I was getting worse as I aged. But, then I realized, I felt worse because I was inactive and my other problems were getting worse because of that. I was gaining weight and losing muscle tone so my diabetes was getting out of control and I was having more muscle pain and neuropathy in my legs. My digestion was worse and I was suffering from boughts of nausea and bowel issues. My blood sugar was all over the place and I was dealing with dizzy spells. But when I tried to find information on how to get active, I kept hearing about how I need to take it extremely slow and careful. Most advice was to only do a couple minutes a day, maybe two days a week. Well, I already know that I don't show any improvement moving that slow. I start, feel gunky because I haven't done any exercise for a long time, get discouraged and stop. Not only nothing better, but it usually is worse along with a huge serving of self loathing. It's then followed up with increases in diabetes medications, the doctor reacting to my exercise flare with more pain meds, then the whole medication side affects and more meds for those, and on and on.

So I got mad, not just frustrated. I was beginning to feel like the whole thing was a set up to get me hooked on more pills. Not only that, but the support groups were starting to feel like pity parties and less like support. So I dropped the support groups and decided to get active.

I began by just getting out more and doing things in our neighborhood and town. Trips to the museums and parks, even though I would get short of breath and have sore legs. I concentrated on my surroundings and less on my discomfort.

As I got out more and with having meetings for emergency preparedness, I realized that I seriously needed to drop weight and get stronger to keep up. I started taking walks. First, I walked 1 1/2 miles to the library and found I could make it, but it was exhausting. I forgot my cane on one of the trips and realized that I really didn't need it. I was using it as moral support, not because it was actually helping me. I stopped using it permanently.

I soon came to realize that I needed to walk more often than an occasional walk to the library, so I bit back my embarrassment at using the exercise room in our apartment complex and started getting on the treadmill there. I started going 4 days a week and walking at 2 miles an hour for a half hour, then increased the speed and time gradually. Yes, I was sore. Yes, I had a fibro flare. Yes, I was often short of breath and thought I was dying.

But, with the help of a good book each day, I was able to distract myself enough to continue. I found that it helped to pick up books about positive energy, how to motivate yourself, and how to increase your happiness.

Then it happened! I started feeling better during the day. Not only was my breathing better and my pain in my lungs gone, but I felt more management over my flares and leg pain as well. I had a flare with my hip when I increased my speed up to 3 mph, but I took an extra day off and started slower when I went back and increased slower. My next doctor appointment went better. My blood pressure was better, I hadn't lost weight and my blood sugar hadn't changed for the better, but my cholesterol was lowered into the normal range.

The next week after that, I increased to 5 days a week. A week after that, the manager put a bathroom scale in the exercise room and I discovered that I had lost 5 pounds. A week later, it increased to a 10 lb loss.

It's been a couple months (I started walking to the library at the end of February and it's mid May now). I'm down 20 lbs now, my blood sugar readings are in the normal range for the first time in a couple years, and I have good management of my fibro pain. I sleep through the night now and I'm finally not dozing off or needing a nap during the day. I can finally keep up with house work and I've been much more successful at getting my knitting business going.

I believe that when we act sick, we actually get sick. You have to stop fighting so hard for the right to be able to be sick and start fighting for the right to wellness. It won't always come to you through the doctor or through medication. Sometimes you have to knock down the walls that are holding you still. I realize that every person with fibro has their own unique set of ailments and diagnoses, but it's up to you to take the reigns of your condition and take control. The doctor's interest is not your interest. I plan to keep digging my way out and I hope you can make a plan to get out also.

Friday, December 4, 2015

Public Shaming Disabled People and Other Thoughts

I have a friend, who like myself, is suffering the effects of having fibromyalgia in a society that doesn't like to face the fact that there are disabled people around them who might need a helping hand. She has applied and been denied disability through Social Security multiple times and has to work in order to support her children and herself and she is getting grief from her co-workers about taking time off when she is ill.

Why is it so difficult for people to understand that when a person feels bad while at work, they are not able to function as well as the other workers. Why is it so difficult for our government agency that is supposed to be helping in these situations to step up to the plate and give these people a little help or let them collect the disability that is there for them? Are we so sure that a majority of people trying to get aid are really able to work and don't need aid, that we are willing to let people who need aid "fall through the cracks" and suffer?

When I talk to this friend, I'm reminded of my own struggle to get help. I had to reapply several times before I finally was able to get disability and then, it was the lowest amount they could award and not enough to support me. I only got awarded, my worker told me, because I had several chronic conditions that aggravated each other, or I would have never been able to get help. Even now, I am scrutinized by the agency continually to make sure I "deserve" to get disability. Every where I go, everything I do, I have to worry if someone is going to decide that I'm not "worthy" or that I'm faking my disability. Even though I know that I need to be parked close to the doors at the supermarket, I have to worry that someone will see me park and get out and walk into the store without a wheelchair or cane and will decide that I'm not disabled (they need to remain around to see me drag myself out, exhausted, after a mere grocery shopping trip to get a load of what I look like when I've used all my reserves on something so mundane). I have people who innocently ask me why I can't work at a business to support my family if I can work from home to do so. I have to patiently explain that most bosses won't allow workers to drop what they are doing and nap mid way through their shift, or spend an hour staring off into space when they should be attending to work. I get asked how I can get laundry done, do dishes, volunteer at something,etc. They feel I need to explain my movements to them. 

To the "nay sayers" I say, "Are you a medical profession that knows my history and case? Because if you aren't then why are you second guessing my doctor's advice to use a parking placard, get in a walk every day, try to stay as active as possible, and be on disability?" What do you know about me and my story that you feel I should be ashamed about what I do during my day? What gives you the right to judge someone else? Do you really think that I want this life? That I looked forward to and worked towards having an aching, sore body? That I want to be trying to live my life while sleep deprived and exhausted? Do you think people chose that? I always hear people say, " and so is really just trying to get attention". REALLY?! I have plenty of talents and abilities that can get me positive attention, why would I seek negative attention?

My advice to you, pay attention to the areas of your own life that could use a little work and stop worrying about what I do. When you are around someone with a disability, attempt to use kindness to deal with that person. They can stand to hear something positive and uplifting and not be shamed about something that they often have no control over. Treat them like you, yourself, would care to be treated. Our world can use a little more positive kindness and a little less negative meanness.

That is all, go about your day...

Thursday, December 3, 2015

More Studies Done on the Good Effects from Knitting

I found another article about studies done on how knitting and other textile hand crafts can improve mood. Not only that, but what really caught my eye on this one is that they say they have found that knitting also helps with inflammation. Since I'm trying to lower inflammation right now through exercise and diet, that is particularly interesting to me.

I've been working on reviving my energy towards my knitting lately. I'm working on knitting up some things to sell on ebay and for members of my little group of family and friends. I started off yesterday by working up some fingerless gloves for myself. I'm having joint pain issues in my thumb again so I decided that I need to have gloves to keep the joint at the base of my thumb warm while I knit. They worked up so quickly that I plan to make a couple pairs to sell as well.

fingerless gloves/mitts in acrylic yarn

I'm also doing some research on how my fibro affects my spirituality or my spirituality affects my fibro. I know that when I'm not fogging out and sleep deprived, I tend to delve more deeply into everything spirtual.
Well, back to knitting and meditating.

Tuesday, March 3, 2015

Invisible Disabilities

I'm reading an ongoing discussion on one of the facebook groups I'm on for knitters and I just have to say, I think that people who deal with invisible disabilities have to be some of the most resilient and strong people around. They not only deal with pain and suffering from their illness and how to cope with that, but they also have to cope with other people who are judgmental and cruel, who make unsolicited comments and have attitudes that bully and hurt. I know that people will all kinds of disabilities have to deal with that some, but it just seems more prevalent with people dealing with something that isn't immediately obvious to the observer.

Unfortunately,  it isn't usually a stranger, but someone they know well, who lives with them or comes to their home that makes the comments, gives the exasperated expression, etc. As a person who has had fibromyalgia for a few years, I know that I am on the sensitive side and tend to pick up on it way too easily. I have to resist the urge to immediately defend my actions, when I really shouldn't ever have to.

I have to say that I'm really lucky to have the family that I have. They support without judgement and understand that pain isn't something that a person "chooses" to have in order to get attention. They know that I would give anything to be able to work and support myself instead of depending on the Government to support me. They know how important it is to me to be able to do all that I physically can before I ask for help for something and when I do ask, they know that it's my last resort and I don't do it for attention.

Its my prayer that everyone else can have the same support and love from the people that are important to them.

Gentle Hugs