Uplifts and Downdrafts

I have worked in the person-centered field of mental health care.  Due to this experience and my own personal life, I have often found taking care of ourselves falls by the side of the road.  Life is so very demanding - and when we care for others it can seem almost selfish to take care of ourselves... to say - No, this is time I must have for myself.

However, there is truth in the statement "you cannot take care of others until and unless you first take care of yourself".  If you have nothing left, then you have nothing left to give.

There is also truth in the statements I often hear, "I have to work to pay bills.  Just how am I supposed to 'take time' to take care of me?" or "Taking care of Jane Doe/John Doe is 24/7 - there is just no time left".

How then, do we reconcile these statements?

I suggest we change the playing field.  This is how:  Stop trying to find big blocks of time.  Instead look for and rejoice in the small minutes that you can use to replenish yourself.

Allow me to provide a few examples:

I may not be able to change the fact that I must work.  I cannot change that I have often worked a 50 hour work-week in order to accomplish all necessary tasks.

• But I CAN make the environment pleasant through full-spectrum lighting, arranging my office to my personal comfort, and ergonomics with my desk, computer and chair.
• I CAN set playlists to which I listen as I work through the day.  
• I DID order glasses with blue-coat on them to reduce glare from computer screens (I spend a lot of time looking at computers as I read through documents about services provided).  
• I CAN make sure that at least twice per week, I am home early enough to cook dinner, eat leisurely, and spend time with my son.  
• I DO leave paperwork and concerns at the office.
• I TURN OFF my phone in the evening when I am ready to start settling down for bed (Do not disturb functions on smartphone are absolutely wonderful!).  
• I DO practice 1 or 3 or 5 minute moments of closing my eyes and simply breathing.
• I DO use desk and office stretches to keep my body from stiffening if I am sitting for a long period of time. 
• I TAKE BREAKS every 45 minutes to change what I am doing - perhaps I will move to file paperwork instead of spending 2 hours straight at the computer.  Perhaps I will contact clients or clinicians and use the phone time to pace a bit around the office.

For many, work may be one aspect of our lives.  For others, it may not be.  However, everyone has a home life of some sort.  We can each increase our wellness by ensuring we make things as pleasant and beneficial as possible.  How?  For me: 

Media

• I turn off the computer in the evenings.  It does not benefit me to stay up late chatting with friends or playing Farmville or other games.
• I turn of the TV (mine only has a DVD player attached to it - I do not have TV channels.)
• I got rid of TV channels.  I do not stream shows online, either.  I am much happier not spending hours of my life watching television shows.  I am less negative not watching the nightly news.
• I DO listen to NPR in the morning on the way to work - this makes my world a larger place.  I listen to NPR sometimes in the afternoons at home or on the way home.

Pets

• I play with Inky and Chai (our dogs).  There is something soothing in interacting with furbabies.  For me, having a dog settles me and gives me an anchor in this busy world.  Cuddles with a dog makes so many things less overwhelming.

Sleep

• I make sure I get enough sleep.  If I do not have 8 hours of sleep, I come to the end of myself before the end of the day.  This is not good for anyone.
• I meditate 15 minutes each morning and each evening. 
• Meditation does not have to be the "clear your mind and go "ohmmmm" type thing so many people think it must be.  
• For me, I spent 15 minutes noticing and naming all that I sense.  There is no judgement.  My mind never stops; but in allowing myself to be still and through channeling my mind to notice what I am experiencing, I can step outside of the rush and so can rest.  
• I have noticed over the last 18 months of doing this that my anxiety levels have decreased over 45% based on mood trackers.  
• I have also noticed I fall asleep faster and my sleep quality has increased dramatically.  I used to need 12 hours of sleep.  Now, I am rested and well with 8 hours (although I do sleep in on weekends and get 9-10 hours).
• I use my CPAP machine.  Sleep disorders result in chronic sleep deprivation.  This has multiple impacts on mood, physical health, ability to function, mental health, etc.  Simply put - if you have a sleep disorder you do not address you are shortening your life and reducing the quality of your life.  
• I sleep in the dark.  Lights can interfere with the production of melatonin.  

Organization

• I attend to household tasks each day so my home is a haven, a refuge, where I can rest and replenish.
• When I come home, I try to ensure that I put things into their place.  This reduces the amount of time it takes me to clean my house.
• I try to keep dishes done each day, which increases the hygiene of my home, reduces chances of having bugs, and makes living here pleasant.  
• There is something anxiety provoking to me to walk into a kitchen with dirty dishes in the morning.  
• Conversely there is something calming about being able to make breakfast and lunch in a kitchen that is both clean and organized.
• I plan ahead.  I do the majority of my cooking on the weekend.  That way, during the week, I can make quick and nutritious meals without much time or cleaning.

Introverts and Extroverts.

• I am an introvert.  There is often confusion about what an introvert is and is not.  Robbie Gongaware, one of the most impactful mentors in my life, explained introverts and extroverts like this:  An introvert is someone who builds up energy in solitude.  An extrovert is someone who builds energy in the companionship of others.  Neither introverts or extroverts should always be solitary or in company.  For each type of person, balance is essential.  However, for each type of person, what makes balance is different. 
• I have found that I am happiest when I have some dedicated solitude built into my day as well as some dedicated time to interact with others.  When I spend too much time in solitude, my world becomes a smaller place.  When I spend too much time with others, I have no energy and become very frazzled. 
• Once a month or so, I deliberately take an entire day to be alone.  This is the time I set my mind free and simply surf the flow of thoughts.  This is when I am most creative and when I generate the ideas I work on bringing into reality over the rest of the month.  I create new recipes and then have the pleasure over the month of trying them out.  I seek new experiences I might want to try.  And, I review the previous month to determine what I want to change over the next month.  I find this time invaluable and a great source of strength. 

Friends

• I have many friends.  A good proportion of these are online friends from various interest and support groups.  Some of the online friends are ones who became friends in "face-to-face life" and then have moved beyond visiting range.  
• I have local face-to-face friends.  I do not interact with these friends as often as I should based on society's standards... but that is part of the introvert balance I have spoken of above.  I touch base with them regularly.  And, I get together with people a couple times per month.
• I understand the difference between friend and acquaintance.  Often I have found that people get their feelings hurt when expectations of an acquaintance exceed the bounds of the acquaintanceship.  
• For caregivers, the tendency is to do "too much" for others.  When this tendency intrudes upon friendships, it creates imbalance and slowly destroys the friendship.  I have found it important to be willing to ask friends for assistance - EVEN WHEN I CAN DO IT MYSELF.  When I was trying to do everything, the unspoken message was that I was "more capable" than my friends.  Now, that I ensure I honor my friends' ability to be capable, I find I am much less stressed and my friendships are stronger.  It was never necessary that I do everything myself.  By doing so, I denied my friends the chance to provide caring and to demonstrate strength and ability.  I have learned to be less arrogant, which has reduced my stress.
• It is okay to say "no".  People who are caregivers often have a difficult time saying no.  After all, if someone asks then he or she must "need help".  This is not the case.  Sometimes people do need help.  Sometimes, the request is instead an offer to spend time with the person.  On occasion, the request is manipulation.  It is important to be able to parse the difference between these, to determine WHY the request is being made, and then to honestly evaluate if this is something you can do and that you are willing to do.  It is essential to not become the martyr who accedes to all requests and resents the time filling those requests take.

Uplifts and Downdrafts

• I have found it helpful to create lists of the short things I can do to renew myself ... as well as a list of things to limit as those items "drain my batteries".  For example, I love a cup of hot tea, looking at flowers, or cuddling my dogs.  These are some uplifts.  On the other hand, dealing with inaccurate bills, interacting with a few select people, or doing dishes are things I find unpleasant and prefer to avoid.  Therefore, when these tasks need doing (and dishes are a daily thing), I ensure to pack uplifts around the unpleasant to buffer out the stress of unpleasantness.  I change the environment to reduce impact of unpleasantness - an example would be listening to favored music while washing dishes.  Another would be steeping aromatic tea while doing dishes to have a cup of hot tea afterwards.
• A previous entry on this blog, April 23, 2103, Box of Joy, discusses how to create a system for uplifts using index cards.  If you are not used to taking time to experience uplifts, this may be something helpful to you.

Exercise

• For me, this is perhaps the most difficult part of wellness.  I have chronic illnesses which sometimes limit my ability to be very active.  However, when you realize that exercise is simply another word for movement, then the whole frame of thinking changes. 
• How many ways can you move your body?  Some days, I find myself doing stretches while soaking in a tub of hot water with Epsom salts.  Other days, I may be hiking.  There are days when I walk with my dogs out in the back yard.  And there are days I dance around my house while taking care of cleaning and dusting.  Instead of thinking "ugh, I have to get some exercise", try thinking "how am I going to move around a bit today...  What will be joyful?"
• If you have chronic structural or systemic issues (osteoarthritis, fibromyalgia, lupus, etc.), try for just a COUPLE MORE MINUTES of moving than the day before.  The biggest problem with "starting exercise" for people with these type of challenges is the doing-too-much-and-so-cause-too-much-pain-to-continue.  And, often it is because on the "good days" there is such need to "get things done" that overdoing becomes a cycle.  Insanity is doing the same thing and expecting different results.  So, maybe changing things up a bit would create a different result.  Pacing works!!

Vitamins and Nutrition

• If you have allergies or dietary restrictions it is very important to make sure you are getting adequate nutrients and vitamins.  For example, due to my allergy to corn, I do not eat any iodized salt (corn-based substance used to attach iodine to salt).  My hair started falling out.  I did some research and talked with others who are allergic to corn.  Figured maybe it was an iodine issue.  I purchased kelp supplements and started taking them.  My hair stopped falling out and is starting to grow back in.
• YOU KNOW YOUR BODY.  Please do not assume that someone with a degree or a license knows more about you than you do.  You are the expert on you.  Many diseases and disorders have YEARS of typical search for answers before diagnosis.  Some conditions are misunderstood or mislabeled due to multiple factors - including societal bias. Homosexuality was once consider a mental illness.  African Americans die of heart disease more often than Caucasians due to treatment disparity.  Socioeconomic status is often tied to outcome for medical and mental health treatment. 
• So, please, develop confidence in your ability to determine what is normal for your body and what is not... and be willing to persist until your providers listen, do your own research, talk with others - but with the awareness that what works for them may not work for you, take charge of your own health  and wellness.  The joke goes that the chicken is involved in breakfast, the pig is committed.  It is very true that no one is more committed in your health and wellness than you are.  Your providers are involved.  You are committed.
• Eat as well as you can.  I will not go into the arguments about GMO, organic, or other food issues.  Instead, I will simply suggest that the healthiest way to eat is to balance your meals between types of foods (dairy, meat, veggies, fruits, grains, other), pay attention to portions (you eat less if you use a smaller plate), get enough liquids (water is best), and reduce as much as possible the more processed foods.  My personal opinion is the closer it is to something grown (whole food - which means the less processed the item is) the healthier it is for you.
• Learn to cook.  Pretty much any item you cook is healthier than that same item bought in a package.  Often, it tastes better as well!
• Avoid, as much as possible, things (notice I did not call those items "foods") high in preservatives, trans fat, and sugar or sugar substitutes.
• Fad diets are fads because they do not have enough foundation in science, nutrition, or common sense to remain in use over time.  DIFFERENT DIETS (eating plans) WORK FOR DIFFERENT PEOPLE.  I do well when I eat a diet low in carbohydrates.  I feel sick when I eat too many carbohydrates.  However, the same eating plan that works for me, sends my sister into serial episodes of hypoglycemia.  So, if a diet does not "work" for you, modify it until it does or try a different eating plan.
• Dietitians - For some people, they can be invaluable.  For me, with the allergies I have and the extensive prevalence of corn derivatives in America, several dietitians provided advice which was dangerous to me.  "This item is safe for you."  Uhm, no, it was not.  So, as with all experts, please make sure that you blend the information provided with the truths your body experiences.  Consultation with experts, did however, provide me with new ideas to trial to new avenues of information to research.

Wellness has so many components more than what were discussed here.  Spirituality, purpose of life, continuing education, etc.  I hope that each person reading this explores the different aspects of wellness and then spends the time required to develop a plan of uplifts and wellness to keep his or her batteries filled.  :)

Tips to open jars when your hands may not work the way you want:

Tips to open jars when your hands may not work the way you want:

to open sealed jars - IF YOU DON'T HAVE TO USE THEM AGAIN COMPLETELY SEALED - use a bottle opener to pop the seal, then the lid will open easily.

To open one you have to have sealed again, run REALLY hot water over the lid for a minute or so. USING A (Silicone is best) POT HOLDER SO YOU DON'T BURN YOUR HAND, twist the lid. Metal expands faster than glass so the heat loosens the lid.

If you don't have a bottle opener, pound a nail into the top of the lid to break the seal. Be careful to use a clean nail, and not to hit the lid so you don't break the glass.

Resource for Disability Hearings - Help with knowing what to log and tips on how to talk about it all

http://www.bothwellhamill.com/index.php/site/hearing_prep_video/



Resource for Disability Hearings - Help with knowing what to log and tips on how to talk about it all.

What is Advocacy?

Advocacy –

Speaking for those who cannot or will not speak for themselves. 

Using your talents and abilities to help others have opportunities to grow, learn, heal. 

Not tolerating injustice, but also actively seeking to increase access to resources for people who do not have access.

Understanding that offering assistance, addressing institutional bias, and working within systems for change DOES NOT confer control over a person’s actions.  One is advocacy, the other is imprisonment – regardless of how benign and comfortable the cell.

Understanding that it not us versus them.  It is instead we.  It is essential that instead of being the Lone Ranger of advocacy, we gather groups of people (including people who would use that which we are seeking) to work together in advocating for change.

Accepting differences and celebrating those differences, while also understanding that opportunities and knowledge are not evenly distributed.  Further, it is understanding that not all people WANT the same opportunities.  It is important to listen to the preferences and needs of the people for whom we are advocating.

How do I advocate?  

I start with the client.  

We challenge and work through internalized messages of lack and damage hidden within “the stigma” of mental illness.  I encourage growth and client-led therapy choices.  I have lists upon lists of community resources which I use to provide access for my clients so that they can obtain needed resources (food, shelter, income).  I encourage my clients to consider self-actualization through education, volunteering, or spiritual development. 

I start with the gatekeepers.

I advocate though developing a network of gatekeepers in the community.  And, when I contact them to see what services they offer, I make sure they have my information and provide them with any information which might enhance or further their mission.  I have done this for long enough that people will call me asking for specific resources. 

I start with my community.

I talk about mental health in my community, spreading information among all that I know.  In this way, correct information gets out into the population and stigma can be decreased.  I have Facebook support groups I co-admin or I host.  I share information sources with people there and on my personal wall.  I create a blog that is open to the public. 

I start with my life.

Advocacy is not only what my future career suggests (ACA Code of Ethics), it is part of who I am.  I am open and honest about my own mental health issues (OCD, depression (or cyclothymia, which is more likely), SAD).  I am open and honest about physical health issues (fibromyalgia, arthritis, nerve damage, allergies).  I use my life as an example of thriving around, coping with, and living through chronic conditions and illnesses.  And, I am very much aware that my experience, as blessed as it has been, is full of resources and opportunities that other people may not have.

Laura Collins

Fibro Colors: What is Fibromyalgia Awareness to you? -- something that is important for everyone to read!!

• This was posted by Fibro Colors on Facebook.  It is worth reading and certainly something essential for all people who have chronic illness or care for someone who has chronic illnesses - regardless of type of illness.

  
  

  https://www.facebook.com/FibroColors/posts/617816111596541

  What is Fibromyalgia Awareness to you?
  
  I believe Awareness is anything that is put out for others to see.
  Whether it be a poster, questions, pictures, articles or stories. I find all information useful.
  
  I am not one to complain, I get up and do what I can each and every day of my life. I have some days I can do a lot, some days I can do a little, and some days I can't do anything.
  I do not get to decide my days.
  I find there are days when I think I can do something and my body changes everything for me. Living with Fibromyalgia is not a easy thing to do for anybody. One thing I will never understand is the judgement we deal with from others who live with Fibromyalgia.
  
  Every single one of us that live with Fibromyalgia have had to learn to endure and do the best we can with every moment we have. Some of us are able to do more and some of us are not able to. I do not understand the judgement if somebody says they can't do something that is their choice. We have people who have lived with Fibromyalgia nearly their whole life and they have learned through time what they can and can't do. We also have newbies that are just learning what Fibromyalgia is and they are overwhelmed and scared beyond belief. I think if we were all honest each and every one of us has been through these emotions and some of us still are going through them. Living with Fibromyalgia is not a choice.
  
  I made FibroColors to spread awareness plus to also get to all those people out there who think they are alone and show them they are not. I also made FibroColors for others to share their experiences and how it is for them living with Fibromyalgia.
  
  There is no need for judgement!
  There is no need for rudeness!
  
  There is a need from each and every one of us to take a moment and pause when we think others are just complainers. Not one of us is in the others shoes. We are in our own. Each day we have our own battle to endure. If you see somebody and they are down and not doing good please remember one day that was you. Some of our members do not have family or friends for support. Some of our members are losing losing their homes due to not being able to work. I do not believe for one minute they made the choice to sit at home and lose everything.
  
  If you take time to read this and this page is not for you I understand. This page is LIKED by choice. We all get choices each and every single day of our lives. We get choices from the minute we wake up to the minute we go to sleep. Fibromyalgia is not a choice and we can't wish it away. If somebody is to say they can't do something it does not make them any less than who you are.
  Maybe you are able to do more and you find the strength to push yourself hard. Only you know how much you pay for this decision. Others who push themselves because there is no other choices are suffering just as much as those who can't do anything due to health issues. NOBODY owns the entitlement of greatest sufferer to Fibromyalgia to have ever lived. Our days are hard and each and every one of us does the best we can. Some days we accomplish something and other days we do not.
  
  We get enough judgement from others we surely do not need to give judgement to others who suffer Fibromyalgia.
  
  I live each and every day of my life to the best I can. I do not complain. I push myself as hard as I choose to do. Some days I push myself too hard and I pay dearly for quite a period of time.
  Other days I try to remember if I do this the outcome might not be good. Every day is a challenge for me. I wake up each day to be surprised of how I get to feel and then my greatest challenge is to do my best with what I can. I am beyond thankful for each and every day I get to be here. I am grateful for anything I can do to make another persons life easier. Some days I can give information that helps other days I can only listen.
  
  I believe each and every one of us has something to offer another person who is dealing with Fibromyalgia, chronic pain or any other health issue. We all suffer just in different ways at different moments each and every single day of our lives.
  
  If you see somebody saying their "life sucks" maybe right now it does and they need support for strength and this is where the others in the group can shine. We each have been in that spot.
  It takes time to learn to adapt to Fibromyalgia.
  
  I do not see this page as anything but awareness!
  Truth is truth no matter how pretty of a picture I can put on this page. There are days that are hard and it takes strength to push onward. My inner strength is GOD, my family and me! I push myself because I need to push myself because if I don't I am giving up on me.
  
  I post questions by others not for a venting session.
  I post questions by others so newbies and oldbies can see all kinds of responses to what the question is about. Some of us are right there beside the person with the issue and some of us have found ways to deal with that issue. Again, it takes time to learn. There is no book to acceptance. We all have to do our time.
  
  If you are new and need information please understand life is not over. This is hard and each and every single person living with Fibromyalgia can attest to this no matter what stage they are in now. You will learn things by reading what others do and you will find things to try that might just help you out. There is no right or wrong way about anything you try to do. I could tell you to do what I do and it might not help you or it might just be the answer. If one thing doesn't work move on to the next thing.
  You will have times of great disappointment and it will take all your strength to push forward. I want you to remember you have the strength! Remember these are moments and moments do pass. I just don't have the answer for when and how the moments will be or when they will be good. Do your best to learn anything you can do. Do not let others discourage you!
  Every single one of us has been there.
  
  If you have lived with Fibromyalgia a long time you are more aware of how hard this is for newbies. Please take a moment and pause and remember they are scared.
  
  At the end of the day each and every one of us has to be accountable for who we are. We do not need more judgement.
  Fibromyalgia is not a choice!
  
  If you feel you have positive information that could help others please message me the information. If you have found ways to make life easier please message me the information. If you do not like this page please don't take time to message me just unlike the page and move on. Every one of these pages on Facebook is full of information in many different ways.
  
  Again, I made FibroColors to get Fibromyalgia awareness out there. I also made this page to let others know they are not alone.
  I believe each and every single one of us can offer something to somebody else to help them. This of course comes with a choice to do it. I want to thank all of you that are here with me and helping make this page grow by LIKING, SHARING or COMMENTING.
  
  Alone we are small but together we are MIGHTY!
  Blessings!
  
   Cindy
  Fibro Colors

Question was asked on one of the support groups to which I belong: What motivates you to keep on with your goals?

• MY response:

  
  

  Laura A Collins Sheer unadulterated stubbornness. I will be damned if I do not live my life... "They" (people who have done damage to me and mine) and "it" (fibro) WILL NOT WIN.

  
  
• 

  Laura A Collins The second part of that is determination to believe (most days - cause I do have sulking and pity party days too!) that I will do what I can and IT WILL BE ENOUGH!

  
  
• 
  
• 

  Laura A Collins I had a professor once in college who carried a pack of index cards in his pocket. He would write things down on the cards and then use those as reminders. When I asked about it, he told me he only had so much room in his brain - so only the most important things went into his memory. All non-important things went onto the index cards. Therefore, he was certain that if he did not remember something it WAS NOT important.
  
  For my life, I try to use the same philosophy. I do the important things - come Hell or high water. If it does not get done, then obviously it is NOT important.

how to make mashed potatoes for when your hands are numb or achy:

Dump a bag of taters into the sink.  run cool (or slightly warm) water into the sink.  Soak the taters for a couple of minutes (this is a good time to drink a cup of hot tea or coffee).  Put two socks over your hands, rub the taters a little to get rid of dirt.  Drain the water.  Let the taters sit a minute or two to dry some.

Put a big cookie sheet into the oven shelf.  put the taters on the cookie sheet - big taters on the edge, little taters on the inside.  Bake at 400 for an hour or so.

When taters are soft to a push, turn off the oven.  Take the taters out (if you need to not pick up the sheet, just take them out one at a time).  Put on a towel and roll them a little with another towel on top.  Slice the taters and squeeze the insides out into a large bowl (If you cannot squeeze them, put them in a bowl, use another bowl and squish them.  Then, use a big spoon to separate the potato from the skin.  Save the skins (more about that later).

With a stand mixer, start mixing the taters on low.  Add butter (chunk up the stick if you are using real butter).  Add water (hot) so things start to smooth down.  Add some milk, sour cream, and/or some cheese.  keep mixing until at a consistency you like.  Add salt to taste.

Now - those skins - On the cookie sheet you baked the taters, layer out the skins.  Sprinkle with spices of your choice and then sprinkle on shredded cheese.  Put them back into the oven at 450 until crispy looking.

So, now you have mashed potatoes (without having to peel, cut, boil, drain, etc.).  You have potato skins.  And, there are very few dishes to do.  YAY!

My Personal Adaptations for Chronic Illness - Some of my Facebook Posts

• Laura A Collins Hiking poles - when out walking on uneven ground. 20 bucks for 2 of them at wal-mart. 
  
  face mask - stops the asthma. (side benefit... for the warped sense of humor people - can make toddlers scream! and worries the heck out of walmart managers) 
  
  VERY little in purse - or a purse that is a back pack. For trips, a waist bag - so maybe I look like I am pregnant (overweight with a bag hanging off my belly/side)... but it does NOT hurt my shoulders, arms or back AND can carry 2 waterbottles. 
  
  Little step stool for shower days when standing is difficult. Sit on it and since it is plastic, dries easily. Also -TMI warning - use it for a foot prop to prop up feet when on toilet (reduces incidence of hemorrhoids)
  
  Re-arrange cabinets - often used stuff in standing height - no reaching required. Re-arrange closets, drawers, etc... Either you can WORK to fit your environment or you can make your environment WORK TO FIT YOU!
  
  Slip on shoes (Birkenstocks) - drop and slide in feet, no stooping needed. Bras that can be fastened before putting on and then pulled over head. Pants that are stretchy so can just pull them up (even when they are zipped so no need to struggle with fingers in the morning).

  10 minutes ago · Like
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  Laura A Collins Necklaces with toggle clasps - so no need to struggle with little fasteners when hands are stiff. 
  
  Pens with extra large barrels - reduces stress on the wrist. 
  
  Split keyboard - reduces stress on wrists when typing.
  
  Place to prop up feet when at desk, better ergonomics for body. Chair that fits body - prob sat in 40 or so before I found "the right one".

  8 minutes ago · Like
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  Laura A Collins Lots of tote bags that have shoulder straps. I RARELY carry things in my arms. Instead, I put them in the tote bags and make a couple trips. No large packing of ANY type. Heavy hurts.
  
  Memory foam topper for my very firm mattress - the best of support and no poking places - soft enough for sensitive joints.
  
  Shampoo (I make my own) in easy to use flip top container - no messing with tiny lids when still half asleep.
  
  Meds in week long keepers - set up a month in advance. (4 keepers). Last one a different color - so when get to that one, call in the refill. Pick up before the end of the week.

  4 minutes ago · Like
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  Laura A Collins One set of migraine meds in a container that FEELS different - so I can get my meds even if I cannot see properly.
  
  Extra epipens and meds in multiple locations (work, travel bag, bedroom, bathroom). Never know when anaphylaxis will hit. Got to be prepared.
  
  Portable nebulizer (battery operated). Take care of asthma where-ever I may be - including hiking or on the road.
  
  List of all meds and medical info in car, at work, in medic alert account, and medic alert bracelet. ESPECIALLY ALLERGIES.
  
  wrist strap on cell phone, recorder I use at internship, and camera. Tendency to drop things is fixed when they are ATTACHED to the body.
  
  Keys on a carabiner. Attaches to purse strap WHERE I can see them - so do not lose them as often.
  
  Calendar on Door of bedroom - so I always see my appointments - every morning before I get dressed, every night before bed. No forgetting. Color code the calendar so it is OBVIOUS even when my brain is half gone from fatigue what is happening the next day.

RZ Face Mask - a review for how it did when I was out and about

• RZ Mask - 

  
  

  Got it the other day (LOTS OF NEOPRENE SMELL). let it air out (stuck it over a fan and turned on the fan). No more plastic smell. 

  
  

  Wore it out today - filtered "air freshener" from sister's car and airborne contaminants from the store. Usually, I can be in Staples for about 10 minutes before having an asthma attack - If I prepare to go by taking Benedryl and doing a nebulizer treatment of Xopenex and Pulmicort.

  
  

  The mask filtered SOME of the fumes from a car in front of us which blew a head gasket and produced some toxic black smoke. This would have typically set off an immediate asthma attack and an immediate severe migraine.
  
  However, I kept feeling like I had to adjust the mask - it sits a tiny bit low on my face. AND, the strap does not stay at the right place on the back of my head. Not sure about that.
  
  BUT - I did not take benedryl before going out. I did not do a breathing treatment before going out. AND I HAVE NO ASTHMA RIGHT NOW! YAY! I do have a bit of a twinge in the back of my head (pre-migraine) from the car fumes exposure, but that should respond to Advil.

  
  

  CONCLUSION

  So, a tentative ok for normal exposure stuff. NOT good enough for major exposure (car fumes from the other car). But, for me - might be enough to let me go shopping on a weekly basis instead of having to wait for the "really good days" or having someone go shopping for me.

  
  

  LINK

  This is the one I have:http://rzmask.com/protective/dust/atv/offroad/splat-steel
• 
  

  Splat Steel‬ | Pop Mask Designs | Best Winter masks | Blue Mask Designs | Splat blue Masks

  rzmask.com
  

  DURABLE NEOPRENE: Abrasion-Resistant Fabric with Comfortable Stretch Fit. ACTIVE...See More

Are you going to get a shower today?

Family - are you going to take a shower today and get dressed?

Me - Don't know yet.  If snoozing all day and only getting up to snack helps kick this migraine, then prob not.  So, going to depend on what I feel like doing.

Family - that works.

Today's reality:
The migraine is better, but still lurking...  I have no intention of doing ANYTHING that causes it to come back.  My chest feels like an elephant is sitting on it - asthma is flared up.  I have a couple swollen joints fingers - for some reason tapping on a kindle is bad for me - and I forgot to use the stylus pen... so I am paying for that.  So, I hurt and that hurt is because I have pushed more than my body likes.  It is also likely I have eaten something to which I am reacting some - slow build, cummulative reaction... Unfortunately, I am suspecting chocolate.  :(

Moral of the story:
Sometimes it is enough just to follow the needs of your body.  I have a paper to write this weekend and a quarter to finish up.  I worked the whole week through a hell of a migraine and I made it through.  Today I slept until 11:00, got up, ate breakfast, and went back to sleep.  I woke back up at 2:00, ate lunch, and have been puttering around.


I am blessed because most of the time my family is willing to let me go at my own pace, to tend to my health needs, and to abstain from casting guilt.  More often than my family causing me problems is that I cause my own.  It is hard to abandon "should, could, and must".  However, as I find myself leaving those behind, I find myself moving into calm and healthier life.  I am finding wellness.

My hope for each of you today is that what you do is "enough" and that calmness and wellness surround you, hold you, and sustain you.

A letter by Jenna Alexander - Regarding Fibromyalgia, but could apply to ANY CHRONIC ILLNESS!

Hi All, this is a letter by Jenna Alexander, who is a member of one of the support groups to which I belong.  She wrote it about her experiences with Fibromyalgia - one of the invisible chronic illnesses which can change the course of a person's life.  I asked her if I might share this, as it is both eloquent and accessible.  She kindly granted permission.  I hope if you see yourself in this letter, you feel not quite alone and I hope if you see loved ones and friends in this letter, you give yourself permission to be ok with NOT understanding even while you accept that your loved ones and friends have limits that are moving targets from day to day.  It is ok to not know the answers and changes of the illness, but to love and to accept the PERSON for WHO HE OR SHE IS!

Laura

Jenna Alexander's Letter

I just wanted to share this with all of you, my fellow fibro warriors. I have finally started to feel better after the long months of constant flaring this year and I have decided I am not letting go of that positive attitude. This is a letter I wrote to my family and friends on FB since my writer's mind is FINALLY clear enough to actually write something I think makes sense (lol!) and is possibly maybe somewhat profound? I don't know. Tell me what you all think if you can please ^_^

Love you all, Gentle hugs! Hope everyone is enjoying good weather and a pain free day!

Jenna

A Letter to My Friends and Family: My New Positive Outlook as a Fibro Warrior

Dear friends and family: I would love it if you could all read this and tell me your thoughts ^_^ (I know it's long, but I am at a turning point and had alot to say)

This week, I have been working very hard to change my attitude about the life I have been granted.

With all of the health issues, new diet restrictions, new doctors, new meds, new living situations, new money issues, the previous 2 TOUGH semesters and the upcoming new experience of student teaching, I have lost sight of a positive outlook. I have been dwelling in the negative, wondering "Why Me?!?!", raging against the things I can't control, and allowing myself to give up simply because anyone else in this amount of pain and mental fog would socially be allowed that option.

But I know I can't keep doing this. I have pushed so many people away in my life because their needs that I can't fulfill make me feel worthless or their constant positivity and comments about how "everyone feels that way sometimes" make me feel belittled and crazy. Constantly feeling like no one understands the pain I am in or the horrendous struggles I have gone through to fix it has made me angry with people I love. I have also sabotaged my own health at times by trying SO hard to be the fun person everyone wants me to be that I make myself sicker, and then I am even angrier with those people who I feel just can't accept my limitations and still want to be around me.

So today I am making myself a promise. I am not going to push people away anymore and I am not going to look at this life as a punishment, asking God everyday what I did to deserve this. I didn't do anything wrong and this struggle God has put in my path is meant to make me stronger not hateful. I am finally starting to feel better after months of wanting to cry and scream everyday and I am not going to let that good feeling go.

I am promising myself today that I will love and show patience to even those who don't understand instead of envying them and being angry with them. However, I also promise myself that I will no longer feel bad about my limitations. I won't make myself sick for someone who only wants to spend time with me when I am in a FANTASTIC mood. It's just not realistic. A TRUE friend will want to be there for you through all the good AND all the bad. I will work as hard as I can to overcome all my limitations in a HEALTHY way and to stay positive about it so I don't bring anyone else down, but until I can overcome my limitations, I can't keep fighting against them- especially not for people who don't truly care about me as a friend.

So, to all my friends and family I want to tell you this- If you can't love me and want to spend time with me in both my best AND my worst times, than I can't have you in my life. Your complete refusal to understand is your choice and shows me that you are not worth my time and I am not worth yours. I understand that for some people, having a friend with a chronic illness is just more than they can handle. That their own lives are to full of struggles for them to help me take on mine. It is ok, I get it, but please don't pretend to be my friend if you are one of these people. It just hurts both of us in the end.

HOWEVER, for those that love me and want to understand, but just haven't been able to yet, I want to apologize for being angry with you. There are many times when I don't understand my own disease, so it is unfair to expect you to just figure it out right away.

So, what I ask of you now is that if you truly want to be my friend, that you simply accept the fact that I know my body, I know my limitations, and just because I am not up for something doesn't mean I don't love you or want to spend time with you. If you can accept that and you can accept that my illness means the way I feel physically and mentally constantly changes (IE. 1 day or 1 hour I am cleaning like a madwoman full of energy, joy and completely clear headed and the next I am crying on the couch, sounding crazy, getting overwhelmed or falling asleep in my chair and forgetting what I said or did five seconds ago), then our friendship will make it.

Also, please don't be offended by my posts about Fibromyalgia. When I post articles, it isn't to make you feel like I am angry with you for not getting it. I am posting the articles 1. For myself so I don't lose them (lol) and 2. For you IF you want to get to know more. I want so desperately for all of you to understand and these articles help me share with you when I just don't have the words to explain (which happens more often than I imagined possible ;) ), I don't want you read these so you can pity me or baby me, but so you can truly see who I am right now and decide whether or not you can accept me for it, accept me for the fact that I sometimes can't function and I sometimes need help even though other times I act like superwoman.

So, I love you all and I hope our friendships will weather this crazy storm.

Sincerely,

Jenna Kaye Alexander
Fibro Warrior

Adapt to your environment or adapt your environment to you... In other words - how to do what you want regardless of physical challenges

Regarding Cooking...

When you have a chronic illness or a physical challenge, sometimes little things ... oh like, say, cooking... become impossible.

Wait - let's look at that sentence again.  

Cooking becomes impossible...         ... the way you used to do it.

However, humans are endlessly inventive.  And, we have created ways around everything - including gravity.  We have transcended the boundaries of our world and walked on the surface of the moon. 

So - what can we do about these basic, essential parts of life?

First - break it down.  

What are the component parts of the task?  What is causing problems? For example - sometimes (often) my hands are too numb to hold a knife.  Why would I need to hold a knife - I peel veggies, I cut veggies/meat into smaller pieces.  

Second evaluate the tasks:

peeling - does the item HAVE to be peeled? - 
    No... ok, scrub it and leave the peel.  Better nutrition anyway.
    Yes - Ok options?
              1.  What about those scratchy gloves that you just rub the peel off?
              2.  What about a peeler - can put a cloth around the handle to make it easier to hold
              3.  Got someone else to ask?  Sounds like a good day for some help!
              4.  Had a good day a couple days ago, took advantage of that day, and peels some of the veggie.  Got it in the fridge/freezer.  So, going to use those. (This would be advance prep).

Chopping/cutting - does the item have to be neatly cut? 
   No - drop it into the food processor and hit pulse.  If it is meat, maybe use kitchen shears.
   Yes - this seems like a job for another day. (Pick your battles).

Third - SATISFICE:

To satisfice is to look at all the requirements and to pick the best solution that fills the majority of the requirements.  While the choice may not be the best for ANY SINGLE requirement, it is the best of ALL the selected requirements.  This is not settling for second best.  It is expanding the idea of WHAT IS BEST.

If you cannot stand while you are cooking:

So don't STAND to cook. Get a stool to perch on.  Sit at a table, in a recliner, lay in bed. A bucket with a little water to drop the veggies in. A trashpail for leavings. And then put it all into a crock pot. The goal is to have a meal - does not matter how it gets done.

A little crock pot with some noodles, some water, frozen diced veggies, and a can of canned chicken makes a nice soup in a couple hours and literally takes 3 minutes to drop into the pot. Better yet, you can take out the little crock, put the lid back on it, and put it in the fridge after you have cooked the meal - so no extra work, no extra dishes.

Also, can use an electric skillet or griddle at the table or even sitting on the floor. Anything with peels can be scrubbed (bucket and the floor) and then dropped through a food processor or into a blender and pulsed if you do not have the energy to chop it. Then into the crock pot. 

Meat - the grocery stores will chunk it if you ask them. does not cost you more and then you don't have to chunk it. Also, I find kitchen shears easier to use than a knife on not-so-good hand days.

Finally, on good days - chop and store extra stuff. Freeze pre-cut onions, chopped carrots with a damp paper towel will last for several weeks in the fridge, you can pre-cut and pre-cook meat and freeze them. Soups can be frozen in ziploc bags. Casseroles can be portioned and frozen in ziploc bags. 

There are lots of ways to make food prep easier on yourself - but eating is essential.

So - when you have challenges

Break it down.  Evaluate.  Satisfice.  

Prep when you have the energy.  Store what you can.  Use gadgets if you can.

And remember - you are smarter than your challenges...  

You may not be able to remove your challenges, but you CAN work around them!

Adapt your actions so that you can live your life in a way that is valuable to you!