Pacing when life won’t stop.

When you have ME/CFS life is all about pacing yourself. Stopping when you start feeling exhaustion setting in and using any energy you may have wisely and in small increments in hopes to reserve some and build more. But when you overdo things you pay for it. You crash. Not to mention it is so easy to overdo it because it is so easy to misjudge how much you have left in the tank and how your body will react.

My current problem though is life is forcing me to overdo it. We have a ton going on and I am already spent, exahusted, but I can’t not do the things we have coming up. Well I guess I could if it were an emergency, but I guess it is a combo of feeling like these are things I need to do and simply want to do. But I know I am going to pay for it next week, big time. My fear always is, what will push me into further, long-term, worse than I have been sickness. And there is no knowing what will cause that.

So I hope and pray and still have anxiety over it. I wish my body would just cooperate with life. I guess all I can do is try to pace and take small breaks during the insanity and hope the impending crash isn’t as bad as I expect it will be.

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Pet Peeve Day

I feel I need to vent my internet pet peeves today. Maybe I am in a grumpy mood. Or maybe my gripes are legit and the people of the internet need to just stop!

Pet Peeve # 1
Can we please stop saying a recipe has “only three ingredients” when one of the ingredients is a box of a bunch of mixed ingredients?

Pet Peeve # 2
Stop with the lists already. The 10 things you must do. Or 15 things never to say to your kids/spouse/employer/etc. We’ve had enough. Life can not be boiled down to bullet points so stop trying please.

Pet Peeve # 3
I admit, I have found some of those silly internet quizzes to be fun but I think we can all agree their time has come and gone.

Pet Peeve #4
Can we stop with the hacks please? Life hacks, camping hacks, Ikea hacks, kitchen hacks. It’s just obnoxious. Tips, tricks, great ideas; there are so many descriptive words in our language. Use them.

Pet Peeve #5
I think we have all been chevroned to death at this point. Zig-zag stripes can go away now.

Pet Peeve #6
Your “Keep calm and . . .” is making me angry. Enough!

All of these things are about as obnoxious as forwarded emails, people who don ‘t understand how to BCC people in a group email and people who don’t know how to use Snopes before they spread stupid things around the internet.

If you like these things or do these things please don’t be offended by my rantings. Heck, who am I kidding, be offended if you want. Maybe we shouldn’t be friends. You needed to hear it so you’re welcome. Anyone who knows me, knows I am (mostly) joking anyway.

Seed Starting – Followup

Winter Sow vs. Starting Indoors

Back in March I posted about starting my seeds for this years garden. I have always started my seeds indoors in a sunny spot. But I had read about Winter Sowing and decided to give that a try as well.

I was very skeptical about the success of this endeavor because our spring has been so wonky. I think the results are mixed but overall I am impressed.

My winter sown peas did not come up. And my spinach didn’t do well at all. A few sprouted and died quickly (I was using old spinach seeds though so that could be the problem. And I have always had trouble growing spinach. The lettuce is doing very well though.

Winter Sown Lettuce

Winter Sown Lettuce

As are the marigolds.

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Winter Sown Marigolds

Indoor Sown Marigolds

Indoor Sown Marigolds

A few weeks after I started these I put out tomatoes and peppers. I have had a hard time with peppers in the past but both my indoor and winter sown seeds are doing great this year.

Winter Sown Peppers

Winter Sown Peppers

Indoor Sown Peppers

Indoor Sown Peppers

I think most impressive to me are the tomatoes though. My indoor seeds always struggle with growing strong and upright and tend to succumb to dampening off (although cinnamon helps with that). The winter sown ones are looking great though.

Winter Sown Tomatoes

Winter Sown Tomatoes

Indoor Sown Tomatoes

Indoor Sown Tomatoes

I really like this method of seed sowing. I am not sure I will give up sowing indoors all together though.
 

This Is M.E.

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May 12th is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia awareness day.

Today I am joining the #ThisIsME and #May12BlogBomb campaigns, and bloggers around the world, by blogging about my illness. The following quote and questions were composed by Louise at TheGetUpAndGoGuru. What she said applies to me as well so I have included it here.

This Is M.E.

Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Deficiency Syndrome (CFIDS). This illness doesn’t even have one name that everyone can agree on, which is one of the many frustrating aspects of living with this multi-faceted illness.

As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I have made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.

Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME in my own personal network of friends and family. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you!

What is your name and how long have you had ME / CFS?

My name is Cheryl and I have had ME for about 9 years total. I got sick shortly after having our first son, almost eleven years ago. When he was four I started to feel better and had about a year of being healthy, but after having our second son, almost six years ago, I became sick again and have not recovered.

Age

34

Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):

I’m not sure there are five things left about me that aren’t illness related. Certainly not five the people in my life don’t know. And certainly not things that don’t being with “I used to”. And I am pretty much an open book, but here goes . . .

1. I blog here.

2. I am an introvert.

3. I really do not enjoy cooking but like to bake.

4. I like cheese. I do not like movies or TV that are disturbing, crass or make me think. I want silly, funny and cheesy. I do enjoy mysteries and documentaries though. And I do like cheese the food as well.

5. I generally only read nonfiction. I also like biographies. I very rarely read fiction.

Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:

1. I have a lot of pain. I try not to complain though.

2. I am afraid of how bad this illness can get. Will I end up bedridden?

3. There are weeks at a time where I can not do anything. If I leave the house it saps all of my energy and nothing gets done at home.

4. I feel guilty, about pretty much everything, but especially if I use the little energy I have to do something I would like to do instead of something for my family or something that needs to be done.

5. If it seems like I am distracted or not listening, give me a minute. It is probably just that I am having trouble processing, thinking, and responding.

What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?

This is a very serious illness that can cause one to become bedridden and can even cause death.

What is the most frustrating aspect for you of living with ME / CFS?

Feeling like I am being forced to watch life go on without me. Having to watch as my family experiences life while I sit on the couch.

Anything else you’d like to say before finishing?

I feel like the point of awareness is to promote action. So here are a few of my suggestions on what you can do to help.

1. Come clean my house. No, seriously though, if you want to that would be amazing. Ha, but really, if you know someone who is chronically ill, please help. Go clean their house, do laundry, make meals, etc.

2. Write, email or call your elected representatives requesting more research funding for ME/CFS. The only way we are going to solve the mysteries of what causes this illness and how to help treat and/or cure it is through research funding.

“The problem is that you need a champion in Congress who’s going to go ahead and say, I want money allocated for chronic fatigue syndrome research. That’s the way it gets done. That’s the way HIV got done, that’s the way breast cancer got done, and so on. It has to be somebody who has some ability to influence the purse. And if that happens, the NIH would only be too happy to take the money and to allocate it and get the best science done. That’s all the NIH cares about.. . . But they don’t listen to scientists. Congress doesn’t listen to scientists. They listen to people who vote for them. . . . The problem is with chronic fatigue syndrome, and I feel bad about this, these are the most vulnerable people. They don’t have the energy or the resources that are needed to go and lobby.”
Dr. Ian Lipkin
from a interview posted on CFS Central

3. Spread the word. Encourage the people you know to learn about this illness and to take action.

4. Donate to one of the many wonderful organizations that are trying to raise awareness or do research. Here are a few of my suggestions.

Bent But But Broken

The Microbe Discovery Project

The CFIDS Association of America

Step Up For M.E.

DIY Liquid Hand Soap from Bar Soap

If you were to imagine a process by which to turn a bar of soap into liquid hand soap you would probably think of taking a bar of soap, grating it and mixing it with water. And you would essentially be right. It is nearly that simple.

A few years back I was disturbed by the fact that I couldn’t find any liquid hand soap without triclosan in it. Then the internet provided me with a wonderful, simple, cheap, diy alternative. Those are the best kind.

I started using this recipe from Savy Housekeeping and have since adapted it.

Here is how I do it.

IMG_1619

Start with a bar of soap. I have a bunch of Ivory soap that I have had in the cabinet for years so that is what I used. Once that is gone I will switch to a castile soap for even safer, better ingredients.

First I used my food processor to grate the bar of soap. This can be done by hand but what a pain. My food processor pretty much turns the bar of soap to a dust.

Next I measure the amount of grated soap. It usually equals 1 to 1 1/2 cups.

Now a cup of soap goes in my pot with 1 tablespoon glycerin and 8-10 cups of hot tap water. It doesn’t have to be hot but the soap melts faster if it is.

I set it on medium to high heat until the soap is disolved. It can be stirred but gently. If it is stirred too vigorously it bubbles up. The soap dissolves pretty quickly when it is dust-like.

Now I turn the heat off and leave it to cool. I go back every half hour or so and give it a quick stir. This is important because it keeps the mixture from separating as it cools. I didn’t do this the first few times and had weird separated soap. I am forgetful though so some times I have to use my immersion blender to recombine it all.

Once it is cool I put it in some bottles I have and use a funnel to refill the soap pump whenever it is empty. This makes a little over a half of a gallon of liquid soap so lasts for a long time.

Bonus: nothing is really dirty. The only cleanup is wiping/rinsing the soap off of everything.

Cost breakdown:

Cheapest store bought liquid soap $3.50 for 32oz.

Bar of soap $0.45
Water $Free
Glycerin $3 for 4oz. (on Amazon) = $0.38 per Tablespoon
Total for approximately 80oz. of homemade liquid hand soap = $0.83

Even when I switch to a higher quality bar soap my total cost will still be around $2.08 total for almost three times the amount of the store bought stuff. Not too shabby.

5K

They ran a 5K.
I couldn’t get up.
They got home.
I was just getting up.
They are sore.
I am sore.
Their muscles hurt.
My muscles hurt.
They ran a 5K.
I sat on the floor and played for ten minutes and could barely stand back up.
They will recover.
Will I? Probably not.

I am tired and sad and so sick of having to miss out on life. I wanted to be there. I wanted to cheer. I want to live life instead of having it pass me by. It keeps going, they keep going, they keep growing. I keep sitting, resting, sleeping, hurting, not being able.

They ran a 5K.
I am proud. I am happy for them. I am sad I couldn’t be there.