Stroller Ban at an Aquarium??!!

http://www.mom365.com/Preschool/Posts/2012/Feb/Will-Stroller-Bans-Hurt-Aquarium-Business.aspx

Yesterday I read the above post on the Our365 website about the Cleveland Aquarium banning strollers in their facility.  This struck me as pretty outrageous considering aquariums are such a popular place to take small children.  I would never be able to take my daughter anywhere without her stroller, especially a place that would require so much walking and standing like an aquarium.  After reading the post, I looked down at the comments and the first one I read (Teresa) really got my blood boiling. I just had to put my two cents in and I did (that's me - Kristy).

I don't mean to come down on Teresa, after all, there was probably a time in my life that I would have made a similarly insensitive remark without even knowing I had.  I realize it's very hard to appreciate your health until you don't have it anymore.  I used to hike to the top of one of my favorite trails here on Catalina and admire the beautiful view and fresh air at 1500' but I never thought to feel thankful for being able to get there.  I took for granted that I could walk or hike almost anywhere I wanted.  (here's the comment and mine if you didn't read the original post)

Teresa February 18, 2012
We have a membership to our local aquarium and they have a similar policy during peak hrs. I think it makes sense, stollers are ***bersome and some ppl use then like battering rams in busy places! Those "umbrella" stollers are one thing, but to parade your SUV of a stoller through busy places is just inconsiderate. Though I am bias, devote fans of slinging our child. It works well for us!

 Kristy February 19, 2012
This is terrible! We recently took our daughter to the Aquarium of the Pacific in Long Beach, CA where they DO NOT have a stroller ban. Great aquarium btw. Sure strollers can get in the way but so do kids not in strollers, people in wheelchairs, elderly or disabled people who move slowly, etc. This is clearly discrimination! And to the first commentor who wrote that people are inconsiderate who bring "SUV strollers" and carries her baby in a sling, I just hope you realize how lucky you are that you are well enough to carry your child. I have Fibromyalgia and Chronic Fatigue and can barely lift my two year old, never mind carry her. My trip to the aquarium was exhausting and very painful but as a chronically ill person these are sacrifices I always have to make. I would never have been able to bring my daughter to the aquarium without my "SUV stroller" (which doubles as a walker for me to lean on since I don't walk very well).

Here's the link to the Cleveland Aquarium contact page if anyone feels like voicing their mind.  I know I will.
http://greaterclevelandaquarium.com/plan-your-visit/contact/

ME/CFS, Fibromyalgia & Marriage - It All Comes Down to Trust

The damage ME/CFS and/or Fibromyalgia does to a marriage can be profound.  Its invisible nature makes it seem phantom-like, drifting in and out of reality (except to the sufferer, of course, to whom the disease is never, even for one moment, forgotten).  Since there are no blood tests to prove its existence, there can be a veil of distrust and resentment that hangs over the relationship.  No matter how supportive your spouse is, there is always that nagging question in your mind  "Is he supporting me out of a sense of duty or does he really believe I'm suffering?". 

I often wonder how long my husband will be patient with my ME/CFS & Fibromyalgia. Will there become a time when he finally says "That's it!.   I've been putting up with her claims of this debilitating illness for years and there's no proof that it actually exists. It never gets better and no doctor seems to be able to help her. Have I just been a victim of her delusional hypochondria all this time?"

Then of course there's the self-doubt. Maybe I really am crazy. Maybe this really is all in my head or I just have too many negative thoughts and emotions. These crazy ideas don't last long, however, when the pain or fatigue reminds you - this is definitely NOT "all in my head."

Most people don't like to complain about their pain because they know it can be trying on their friends and families and also they don't want to appear weak.  Unfortunately, with ME/CFS & Fibromyalgia, the moment you stop complaining, your suffering is forgotten by many around you.  You look fine, so why shouldn't you feel fine.  When I first became ill, I complained all the time, trying to get sympathy from my husband who, I thought, didn't at all comprehend what I was going through.  I'm sure my complaints were interpreted in a different way from his point of view however.  Now I try not to complain as much or moan and groan when my pain is particularly bad and my husband is more likely to ask me how I'm feeling. I can definitely say our relationship is much better for it.

With no way for your spouse to directly experience what you are feeling, it all comes down to trust.  If a marriage is built on trust it has a good chance, I think, of surviving ME/CFS and/or Fibromyalgia.  It definitely takes patience and understanding from everyone involved.  Spouses have to learn to be patient with their ill counterpart and just as importantly, the sufferer has to be understanding and realize how difficult it must be for her spouse to see her hurting and not be able to do anything about it.  In a marriage where one of the two is afflicted with ME/CFS and/or Fibromyalgia, both definitely suffer, just in very different ways.

Being a Mom with ME/CFS & Fibromyalgia

My almost two year old daughter goes to a really great pre-school for toddlers.  Every once in a while I get asked to bake a plate of cookies or, yesterday, fill out Valentine's for the 22 total children in the program (including the regular pre-school).  These are tasks I can usually handle without too much effort but last week, one of the teachers asked if I would attend a parent's meeting later that week.  I agreed thinking it had to do with the financial problems the center was having and the talks of closing it down.  It turned out it was just a regular monthly meeting that I hadn't known existed until then.  I sat and listened to a recap of last months meeting which included plans for upcoming fund-raisers and holidays.  I started to feel uncomfortable as parents began raising their hands to volunteer for different jobs associated with the latest fund-raiser, a St. Patrick's Day Dinner at one of the local restaurants.  Another parent, who was a teacher at the local public school, talked about ways she could publicize the event to her students and other teachers.  I began to quickly realize that they were expecting a level of parent participation I simply could not offer.  I started feeling sad and weak.  I really wanted to be a parent that got involved with my daughter's activities.  After all, this was just the beginning.

I left the meeting thinking I would never attend another one.  Then I began imagining what I would do when one of the teachers asked me if I could help serve the St. Patrick's Day dinner or help with clean up.  Would I tell them I had Fibromyalgia and Chronic Fatigue Syndrome and as a result was unable to help much physically or even sit and collect entry fees or sell raffle tickets.  What would they think?  I have an idea it would be something to the effect of - "Fibromyalgia?  What is that - some diagnosis created to sell more drugs?" Or "Chronic Fatigue?  We're all tired lady, suck it up and give us a hand here.".  I quickly dismissed using those as explanations for my lack of participation.  My doctor had told me he thought I may have Mixed Connective Tissue Disease.  I could tell them this was my ailment because maybe it sounded more "real".  Maybe I could tell them I had Lupus.

My heart quickly sunk when I realized that doing this would only perpetuate the total lack of understanding that exists about Fibromyalgia and Chronic Fatigue.  I felt trapped.  My heart told me I had to spread awareness about the seriousness and "realness" of these diseases and not hide behind some more serious "sounding" disease so people would more easily understand my suffering.  At the same time I feel I don't have the energy for this fight.

I don't know yet what I'll say when I'm actually presented with a request for my help at the fund-raiser.  I'll only know when the words leave my mouth.

My Messy Apartment is Driving Me INSANE!

Are any other Fibros out there sick and friggin' tired of their homes looking like pig sties?  Unless you are fortunate enough to have a husband/wife/roommate who cleans, you probably have an abode that looks something like mine.  Laundry piles up, dishes pile up, dust piles up, etc, etc.  Sometimes when I roll out of bed and walk into my living room I want to cry.  The floor hasn't been vacuumed in weeks, there are toys scattered all over the floor and overdue bills and other neglected paperwork piled on practically every surface.  I can't lift the full laundry basket so I have to wait till my husband is around or make several trips to the washing machine with small arm-fulls.  By the time I've done that, I'm spent.  On a good day I can recuperate for an hour or so and continue with chores.  On a bad day, that may be all I get done.  I may not even get the clothes from the washer to the dryer.

I know other ME/CFS/Fibromyalgia sufferers can understand how incredibly frustrating this is.  I was never a neat freak by any means, but a messy home gives me so much stress and I don't think the excess dust does me any good either.  If I had the money, I'd certainly hire a cleaning person once a week or so but since I can no longer work, that's out of the question.  I just have to do what I can and put blinders on for the rest, although that's a whole lot easier said than done.

Graded Exercise - How NOT to Do It

I try to get out and walk every day, even if it's not very far.  I had just started trying "graded exercise" which I've read is recommend for Fibromyalgia sufferers.  Basically, the concept is, to increase your exertion levels in very small increments over a long period of time.  The theory is, that this type of slowly increased, low-impact exercise, will not cause ME/CFS & Fibromyalgia symptoms to intensify as regular exercise usually does.

I bought an app for my iPhone that measures distances walked, average pace, altitude, where you walked and more, using GPS.  Just as a side note, I really like the app and recommend it highly.  It's called MotionX-GPS.

Anyway, the app can be set to give an auditory update every five minutes with average speed, distance traveled and time passed.  I wanted to keep track of how fast I was walking, since it's often hard for me to judge, and increase my speed slowly over time. 

I began walking, with the new app on my iPhone last week.  I was having a pretty good day, so I decided to do a 1.5 mile walk.  My average speed was 2.4 mph.  The next day I walked the same route and had a similar average speed.  The day after that I decided to try to kick my speed up a bit.  It seems I got a bit over-confident.  I pushed myself and tried to maintain 2.7 mph.  Of course, people as old as my parents were flying by me like I was standing still, but I had to really push my leg muscles to keep up that pace.  I was really proud of myself and managed to repeat my performance the next day but that was the end of that. 

I guess the two 2.7 mph days, pathetically, knocked me out.  I was extremely fatigued and weak for days after.  That was six days ago and finally, just today, I was able to go for a walk.  It was a little under a mile and my speed was more like 2.0 mph and that was as fast as I possibly could have walked.  My muscles felt weak and shaky and I kept loosing my balance.  If I'd tried to walk any faster I probably would have fallen down.  I wonder how long it'll take before I'm able to walk normally again.

The lesson here is, in graded exercise, when they say very small increments, they mean VERY small.

Oh....My Beautiful Garden

When I returned to Catalina after being gone for so long, I knew one of the things I would have to confront was the state of my beloved gardens.  The only people here while I was gone would never have  noticed (or cared) that a plant was withering away and dying from lack of water.  Actually, it wasn't as bad as I had envisioned.  It had rained several times while I was gone, so it was more a matter of overgrowth than anything else.  I did loose one Thyme plant that I'd grown from seeds because it just wasn't mature enough to handle the long dry periods, but I couldn't really complain.

Every time I walk out my door I am reminded that I am unable to kneel down or bend over my beautiful plants to care for them.  The weeds have grown in all the spaces between the bricks.  Only I haven't forgotten that the bricks are there I think.  One plant has grown across more than half of the walkway I use to get to my washer and dryer.  Every time I step around it I cringe and think "one day I'll feel well enough to get my shears out and cut it back".  I've been home for fourteen days and it hasn't happened yet.

Before I got sick, the garden was one of my favorite, most peaceful places to be.  When I went through a very difficult time, at the end of an eight year relationship, the garden saved me.  I spent so much time there and felt so at peace touching the plants and dirt.  The two cats that have lived in the garden for the last three or four years sat near me while I pulled weeds and trimmed plants. 

I so miss being with the plants and the dirt.  I hardly see the cats anymore and the garden is overgrown and messy looking.  It feels like a symbol for all the dimensions of my life that have withered away or have been overgrown like the bricks in the garden.  Meanwhile, I watch helplessly, as it becomes wilder and wilder, returning much to the state it was in when I first moved here five years ago.

Alpha Nutrition Diet.....No More

Well, I didn't make it through the ten days of the diet again.  Seven was as far as I got.  Yesterday I was so discouraged and worn out I just gave up and ate almost an entire box of cookies.  Boy, did it taste good after seven days of rice, water & ENF. 

I'm not really sure if the diet was helping me or not.  It seemed like it was during the first couple days but after that I'm just not sure.  It certainly didn't make anything worse.  I do recommend though, for anyone trying the diet, to mix the ENF with water not juice.  It tastes much better with juice but gave me horrible heart burn.  I wish I could report something more conclusive. 

The idea of delayed pattern food allergies still seems to make sense to me.  I do believe that all the chemicals in our food supply must be having repercussions of some kind.  The idea that the constant ingestion of these chemicals into our bodies is screwing up our immune systems makes perfect sense.  Let's face it, during millions of years of evolution, our immune systems have never encountered such a bombardment of chemicals (pesticides, preservatives, hormones) and they don't know how to process them.  They attack them, but these are not like the viruses and bacteria the immune system evolved to destroy.  It's no wonder the immune system goes crazy and starts attacking things it's not supposed to.  It's no wonder that we become allergic to foods that, in the past, we weren't really allergic to much.  I think it also accounts for why so many more people are reportedly getting autoimmune diseases.

My mom is a retired grammar school teacher, now substitute teacher.  She tells me that there are classrooms that are classified as "NO PEANUT ZONES".  This indicates that a child in the class is so allergic to peanuts that they will go into anaphylactic shock if they're even around peanuts.  This means that no child in that class can bring peanut butter and jelly sandwiches to school, and their parents receive a notice at the beginning of the year indicating this.  I remember kids being allergic to bee stings and poison ivy but nothing like what my mom tells me about.  Does anyone else find this strange?  Why are so many children so deathly allergic to foods? 

Maybe one of these days I'll get up the will-power to try the Alpha Nutrition Diet again.  We'll see.