My Health Trumps Fashion

I have never been interested in the latest fashions, and never bought into the 'look younger' hype. That has made it fairly easy for me to adapt my style based on needs of my body, rather than current trends. I never felt comfortable in high heels, the highest I ever wore was probably 1 inch, and it had to be more of a wedge than a spike. Now my shoes are all flats, with plenty of toe room, and if there isn't enough arch support, I put more in.

I used to wear a little makeup, but not consistently, and I never got into a routine with it. These days I have enough things that I have to do to keep all my orifices and surfaces clean, moist and healthy. I can't imagine having to put on makeup in the morning and then cleaning it off in the evening, as well as making sure it doesn't get smudged when I put in eye drops. My mom used to tell me that men would be more interested in me if I dressed nicer and wore makeup. I told her that if that is what they were looking at, then they weren't looking at me. I did find a wonderful man who likes me just the way I am. I didn't even wear makeup for my own wedding 14 ½ years ago.
This past year I have had problems with skin pain, It started with hypersensitivity on the left side of my torso, and has since expanded to include both arms and both thighs. I don't have it all the time, and not predictably, though I am paying attention to it to try to figure out what triggers it. I have seldom worn a regular bra for the past 7 months. I wear a sports bra sometimes, but most often I wear one of those workout tops with a built in bra shelf, or just a tank top under my shirt.
The most recent in my fashion bucking trend is that I have decided not to shave my legs. I usually go through the winter without shaving, because no one sees my legs then anyway. Then I start to shave again in the late spring, when I start to wear capris, shorts or skirts. This year I have had severe pain in my left hip and down my thigh. The worst pain comes from standing or staying in any static position. It hurts just to think about shaving my legs. I kept putting it off later and later into the season, wearing shorts and skirts that exposed my fur, and not really caring who noticed. The ultimate challenge came a few weeks ago when I went to a wedding in a nice dress, with hairy legs (and flats). Guess what happened? NOTHING. No one commented, or made ugly faces at me, I was not kicked out or chastised or ridiculed.
Now that everyone is thoroughly disgusted and sickened by what I must look like, let me tell you why I am writing this. It is to show you that you don't have to conform to what other people expect. Whether it be because you want to make your own fashion statement, or because you are like me and your health is a higher priority than your vanity, make your own rules (or lack thereof). You are beautiful just the way you are.

It's Not My Fault

This post is sort of a companion post to 'Permission Not To', which I wrote 3 weeks ago.  That post was about giving myself permission to take care of my own needs rather than take care of other tasks.  The title of this post, 'It's Not My Fault' sounds like I am trying to shirk my responsibility.  I'm not, because it really isn't my fault, and it isn't yours, either, so quit blaming yourself.  I am talking about our illnesses.
All too often I read blogs or emails, or hear comments such as "I was too tired to do anything after work yesterday, I went right to bed. I am worthless to my family."  Or "I wasted the whole day in bed yesterday because the pain was so bad. I didn't get any housecleaning done.  It is a wonder my husband puts up with me."  Statements like these are blaming the victim (aarrggghhhh!  I hate that word!)  Both these examples could be made by people with chronic illness or pain, and both blame themselves for the results of having that illness or pain. 
I know for a fact that I did not raise my hand and ask to be given Sjogren's Syndrome, Fibromyalgia, etc, and I am going to guess you did not ask for whatever you have, either.  It is unclear for many illnesses why some of us are so blessed, but it is often not anything we did.  Likewise, the symptoms are not something we asked for, or caused by anything we did.  Extending that to the next step, the results of those symptoms are not something we asked for or anything we did.  If you can't do something because or pain, fatigue, or other symptoms of your illness, you are not to blame.  It is true that maybe you could manage your time or energy differently, but frequently, it would not have made a difference. 
Take yesterday, for example.  I woke up tired.  I spent the whole day in a fog.  I had alot of things that I needed and wanted to get done, but accomplished very little.  I could beat myself up over that.  After all, that puts more of a burden on me to get things done today.  But I won't beat myself up, because I didn't ask to wake up in a fatigue fog.  I got enough sleep, it just happened.  It's part of the package of who I am.  Getting upset about days like that won't make them go away, it would just make them more miserable.  I would rather go with the flow, and just accept them, and remind myself that I did the best I could.

Goals

My most recent Chronic Illness/Chronic Pain Support group meeting was on 'Goals.'  Here is an excerpt of the handout. What is a goal?
A goal is a specific outcome to aim for. Having goals can help with motivating yourself, planning how you spend your time, and with decision making.
Why goals are important for people with chronic pain and illness
Our lives have been disrupted, we may no longer be able to pursue the plans we had made for our lives.
We may be limited in the activities we can do, it is very easy to feel discouraged and useless.
Setting goals can help us redefine ourselves and what is important to us.
Having goals can help in deciding how to use our limited energy.
(I have seen several versions of this S.M.A.R.T. method of writing goals.  Here is one:)
Setting S.M.A.R.T. Goals (From Mark Stibich, Ph.D., former About.com Guide)
S - Specific:
You must state your goal as specifically as possible.
Have your goal be like an instruction telling you what to do.
M - Measurable:
You need to have a way to measure progress.
A - Attainable:
Your goal should be meaningful to you. It should be set by you, not someone else.
The goal should be inspiring enough that it motivates you to success.
R - Realistic:
Goals should be ambitious, but not impossible. Do not set yourself up for failure.
Break large goals into smaller goals.
Create a plan to do all the steps you need.
T – Time Based :
When will you finish your goal? You need to choose a time, the sooner the better.
(We thought that the word 'Attainable' meant almost the same as the next word, 'Realistic'.  We decided to replace it with 'Aspiring', ie, something you would aspire to.)
Write your goal:
Finish the following sentence, write it down and put it somewhere you can see it:

I will [your goal here] by [how you will do the goal]. I will know I am making progress because [how you will measure the goal] [time goes here].
For example: I will lose 20 pounds by increasing my exercise to 4 times a week and cutting back on sugar and portion size. I will know I am making progress because I will lose 2 pounds a week for ten weeks.
Now really think about your goal.
I will [________________________________________________________________________] by [__________________________________________]. I will know I am making progress because [________________________________________________] [_______________________________].
(Not all goals fit this format, but it is a good place to start.)  Now evaluate your goal – is it Specific, Measurable, Aspiring, Realistic, and Time-Based? Good. Now go do it! 
Tips for achieving your goals
Don't try to work on more than three goals at a time.
Review your goals daily.
Put your goals in writing.
Use 'I will...' instead of 'I want to...'.
List benefits of reaching your goal.
List possible obstacles and how you will overcome them.
Break large goals into smaller more easily achieved goals.
Reward yourself for progress and accomplishment.
Make your goals public or have a goal buddy.
Make working on your goal a priority.
Visualize achieving your goal and what that would be like.

It can be hard to make and to pursue goals when you do not know how you will feel from day to day, or when and how bad your next flare will be.  Goals are still important.  Just recognize that disruptions are a part of life.  If you have a setback, cut yourself some slack, and pick up your goal where you left off.  You may even need to back up a bit, if you have lost strength, endurance, or whatever.  That is okay, its not your fault. As long as you don't give up, you are still on track.  

Small Changes, Big Payoff

I'd like to wake up one morning (the sooner the better) with no pain, no fatigue and no dryness. I am realistic enough to know that that is not likely to happen, no matter what I do. There are things I can do to make the life I have more comfortable, and some of those things are very small changes.

My husband and I like to lie in bed and snuggle for a few minutes before getting up in the morning. He has a beard that feels like sharp sandpaper when he lays his head on my shoulder. It leaves a red irritated area on my skin that lasts for a few hours. I had a brilliant idea yesterday morning, after 14 ½ years of marriage. I folded a piece of Kleenex and put it between his beard and my shoulder. Voila! Small change, big payout- my skin did not get irritated.

Too often, when we don't like our circumstances, we complain and argue, cry or sulk, or suffer in silence. Instead, we can step back and look at the situation, and try to find a small change or two that would make things better.

Here is another example. One of the tasks I do when we are at our cabin is maintain a trail I built on our property. In the past I used to try to keep it clear of growth. I would spend several hours a day out there, then be sore for days after. I worked on the trail about 1 ½ hours Sunday, for the first time this season. Rather than trying to clear the trail, I just pulled up the taller plants. Monday was in the low 90's and humid. I did not work on the trail at all that day. I don't tolerate heat well these days, and a cleared trail was not worth the soreness. The change? I am less obsessive about the trail. The downside? The trail is not as clear. The payoff? My body is much happier than it would be, but the trail is still passable. Definitely worth it. (This example also fits with my recent post on giving yourself permission.)

Jars have been getting more and more difficult for me to open. I no longer try to open them with my bare hands. First, I went to using a rubbery square thingy that gives me better grip. Now I use a jar opener that is shaped sort of like a nut cracker, that has 4 semicircular rubber lined sections in graduated sizes. You fit the jar lid in the size opening it best fits, and the opener gives not only traction with the rubber, but also leverage. Jars open easily with the help of this device.  There are other styles of jar openers available.  I still use the rubber square to hold the jar itself sometimes, but usually don't need it. The change? The right tool for the job. The payoff? For a few dollars, I can do a common task much easier, with less strain on my body.

Now its your turn. Pay attention as you go through your day. Is there something that annoys you? Frustrates you? Is difficult for you? Hurts you? What can you change about it? Remember that asking for help and saying 'no' are legitimate ways to change a situation. So is learning to accept that there may not be anything you can change, other than how you let the situation affect you. (With the trail, a big part of my change was accepting that: a. I could physically no longer maintain it as I used to, and b. That was okay.)  

Pandora Internet Radio

I have recently discovered Pandora internet radio.  I will try to describe it.  You can bring it up on any internet connected device. The opening screen asks for the name of a musical artist/group or a song.  Then it creates a 'radio station' with that artist/song, and others that it thinks are similar. For instance, I just put in 'Den', and clicked on 'John Denver' in the suggestion list.  (With each letter you put in, it gives a list of suggestions, as you add more letters of the name, the suggestions get closer and closer until the name you are looking for appears.)  Right now I am listening to Jim Croce's 'I Got a Name', one of the songs Pandora picked as similar to John Denver.  I agree with almost all the songs Pandora has chosen for me.  I am rediscovering songs I had forgotten, and also discovering new songs and artists that I like that I never knew about.  
With each song that Pandora chooses for you, you can pause, skip, bookmark, or designate if you liked it or didn't like it.  That way, if it chooses something you especially like, it will use that song to find others, and if you didn't like a song or artist, it will steer away from them. We just listen to the free version of Pandora, which interrupts the music every 10 songs or so with a commercial for upgrading to the paid interruption free version for $36/year.  Pandora saves each 'radio station' you create, so when you return, you can either have it create a new station, or you can listen to the same one.
A couple of days ago, I had alot of Fibro skin pain, and I wanted to meditate to calm it down.  I wanted classical guitar to listen to, but did not know any artists or songs to start the process.  I went to Pandora, and put in 'guitar'.  I tried out a couple of their suggestions, and found 'Dueling Guitars", which was the kind of music I wanted.  At their website, I just found a page that allows you to designate a genre.

I went to Pandora.com, and found some info about it:

Since we started back in 2000, we have been hard at work on the Music Genome Project. It's the most comprehensive analysis of music ever undertaken.

Together our team of musician-analysts has been listening to music, one song at a time, studying and collecting literally hundreds of musical details on every track - melody, harmony, instrumentation, rhythm, vocals, lyrics ... and more! We continue this work every day to keep up with the incredible flow of great new music coming from studios, stadiums and garages around the country.

Music has been shown to be very therapeutic.  It can change your mood, and make you feel better emotionally and physically.  Check out Pandora.  Find music that will both suit you and soothe you.  Just one recommendation:  If you need to get any work done, either listen to instrumental music, or don't listen to Pandora.  This was not going to be my topic today, but I kept getting drawn into the songs, and could not focus to write coherently on my other topic.   

Permission not to

Good intentions don't always make it to the finish line.  I was going to write a post over the weekend, but was busy with my oldest son and his girlfriend in town visiting, and with the wedding and related festivities of a good friend of his, all while trying to cope with a bad flare of fibro skin pain.  I was going to write a post yesterday, but ran out of time and energy.  I was going to write a post today, but fatigue had taken hold of me by the time I got home from the grocery store after seeing my rheumatologist after working half a day.  So here I am, not writing a post.  Wait a minute.  Isn't this a post?  Am I not writing it?  Apparently, I am writing a post about not writing a post.
Long story short, I have been working alot at the hospital, and had a very busy and intense weekend, and I am beat.  I don't have the brain capacity to write anything intelligent.  So why am I writing this?  Because I try to write at least twice a week, though it doesn't always happen.  I don't want my readers to stop by and go away empty handed.  If that happens too often, they won't stop by anymore.
The main reason I am writing this is that I know how hard it is to give yourself permission to drop other obligations in order to take care of your own needs. If you are reading this, there is a good likelihood that you have some kind of chronic something or other that requires you to be extra attentive to your needs. If you don't look out for your own needs, who will?  And if you don't give yourself permission, who will?  I am going to follow my own advice, and give myself permission to take care of my own needs.  They say that imitation is the sincerest form of flattery.  Please flatter me sincerely, and give yourself permission to take care of your own needs.

Sometimes its Worth the Pain

I get monthly e-mail updates and quarterly journals from the Fibromyalgia Network.  They have a very informative website, as well as good articles in the journal and updates.  One of the articles in the update I just got was about a survey that was done with people with fibromyalgia.It was performed by Lillemor Hallberg, Ph.D., at Halmstad University in Sweden.   It was synthesized into 6 strategies for living a balanced life with fibro. The 6 strategies are:
1. Distract yourself from pain. 
2. Participate in activities that alleviate your pain.
3. Avoid unnecessary stress.
4. Use good days wisely.
5. Plan activities in advance.
6. Too much activity is sometimes worth it.
I want to comment on this last one.  Most strategies we hear about are strategies for decreasing the symptoms we don't like.  This last strategy is different.  This one tells us that while decreasing symptoms is good, you have to live your life, even if it means increasing symptoms sometimes. If you always err on the side of caution and avoid anything that causes pain or fatigue, you are missing out on life.  
Sometimes a family gathering or a social event are worth the price of a few days pain afterward.  The trick is knowing how much and how often. Each of us is different, there is no magic formula. It takes thought, and perhaps some trial and error.  What is important to you?  How much is this event/activity worth to you?  Project into the future to the day after the event.  You are lying in bed, groaning.  Are you thinking, "Where was my brain?  I should not have done that."  Or are you thinking, "Man, do I hurt.  But it sure was great seeing everybody."  If you skipped the event, would you be regretting it the next day?  
Asking yourself these kinds of questions will help you identify when it is worth it to push yourself past your usual limits, and when it is not worth it. You be the judge.  It is your life, live it.  (Yeah, I know.  Easier said than done.  ; )
The article ends with this:  
The only common strategy the researchers did not endorse was to ignore pain. “By ignoring pain, the women’s fast pace and hyperactivity is maintained,” says Hallberg. “This will probably result in increased pain and fatigue and increase the imbalance.” While the researchers felt the distraction and activities strategies were key and could be learned, patients felt that reducing stress might have the best impact.