A geriatric nurse practitioner disabled with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) living as well as I can with a chronic illness. Always a bit introverted, tendency to geek out about medicine, health, nutrition, gardening/permaculture. Hoping to make someone's path easier by sharing information on diet, medical research and what I've found works for me ~~ Ellie Strand, MSN, RN, APRN (Ret.)
This is the eighth in a series of posts inspired by photos that make me and hopefully you, more relaxed by looking at them, imagining myself in them and feeling the environment of the shot. If you don’t know what a spoonie is, here’s a short article that explains it.
Our fifth installment of photos that make me relax just by looking at them. I’m posting in the hope that they will also be relaxing to other spoonies. If you don’t know what a spoonie is, here’s a short article that explains it.
Want to see something in particular? Let me know below.
Equations were never my strength. Even before ME/CFS I couldn’t remember the common ones, like how to find an area of something. If someone looked at me funny because of it, I reminded them that Albert Einstein never memorized his phone number. He didn’t want to crowd his brain with information that could easily be found. That usually shut them up. 😉
Anyhow, here’s an equation that even I can remember.
Saving Money=Sustainable Nutrition=Healthier Body
It’s not news that we are living in a nation of quick and easy meals from a box, freezer or the bag handed through a drive-up.
It isn’t easy to eat healthily and sustainably, especially on a budget. Here’s how I manage it.
Starting with produce, I check organic prices and if there is a good conventional produce sale. Most of the time the loss-leaders are on the Dirty Dozen list, so I don’t buy them. Once in while I can snap up a great bargain–like a couple of months ago when organic avocados were selling 2/$1 because they were all ripening too fast.
You don’t know about the Dirty Dozen list (not the Steve McQueen movie)? Each year the Environmental Working Group looks at all the pesticides applied to all the crops grown for sale in the US and assigns each fruit or vegetable a rank in comparison to each other. The top 12 “winners” are called the Dirty Dozen.
Summer fruit and veggies I don’t grow myself are bought at one or more of the local Farmers Markets. Here I can talk directly with the grower and be certain no pesticides were used–especially glyphosate (RoundUp®).
While I’m at the Market, I also buy pastured pork products from a family farm where the pigs roam about and don’t receive antibiotics to grow faster. My beef is grass-fed and raised on a friend’s farm where the cattle receive excellent care.
I used to do public relations for the top crop seed breeder in the US. As part of this, we spent time in Colorado, Kansas, and Nebraska where a whole lot of feedlots hold a whole lot of cattle. These steers spend the final months of their lives, sometimes up to their knees in manure, in a crowded feedlot with cattle they never met before. No wonder grass-fed tastes better. Just think of the stress those feedlot animals are under!
If you want to eat better for less, these are good ways to cut your food budget:
EAT LESS MEAT
Even when bought in bulk, meat from animals that have the freedom to wander pastures is expensive. Organic is not as necessary to purchase as beef that is 100% grass fed. Why is this important? First, grass-fed cattle are on pastures all spring, summer, and fall here in Wisconsin. They can remain outdoors even during winter in many other areas of the country so you know they are as close to having a good life as it’s possible for cattle to have.
Second, grass-fed beef has a very good nutritional profile compared to conventionally raised steers. This meat has less total fat, more omega-3 fatty acids, more conjugated linoleic acid and more antioxidant vitamins, such as vitamin E (Source).
Although my freezer is still full of freezer paper wrapped roasts, steaks, hamburger, we don’t have meat at every meal. You could try observing a Meatless Monday for a few weeks. Then look at the difference in your grocery budget. There are lots of vegetarian main dishes you can find online
If you are interested in some of my recipes, let me know in the comments. I was a good cook when I was working. However, I didn’t really have time for something that couldn’t go in the crockpot or on the table in less than an hour.
When I started getting better I began to change my eating habits. This inevitably leads to learning how to cook all over again. I love that I now know the most nutritious ways to prepare meals and snacks, but I know I would find it more difficult if I were still working. Soaking beans and grains, making sourdough bread, and accounting for the time my Instant Pot needs to naturally release before opening all take more planning than I was up to when working.
The obvious solution is a multi-generational home. Grandparents would be the traditional cooks and childcare providers for their children’s families. Sadly, I don’t see that happening much around me or with me. Sometimes I dream about what it would be like living with my daughter and her family (husband, 2 girls, dog) and it’s all good. Until I remember they live in the Washington DC/Baltimore Metroplex.
Now, where was I?
Ah, yes. Here it is.
BUY IN BULK
Grocery stores are offering more and more healthy choices. Frequently, they will have a bulk foods department that may or may not contain organics. Conventional granola, trail mix and sesame sticks bought in bulk are an environmentally responsible choice even if they aren’t all that healthy. If you want to be super PC, buy from the local health food cooperative, natural foods store or buyers club.
I buy in bulk whenever possible because of things like steel cut oats at half the price of the imported can. For example, splitting a quarter of a cow. I have a small chest freezer, but my friend who split the purchase with me got everything from her half of a quarter into her side-by-side freezer.
Out-of-season fruits and vegetables are more expensive, not to mention less sustainable, because of the fuel and other resources used in transport from other areas with different growing seasons. Buying local is, by definition, buying seasonally. It’s good for you in several areas. Traditional medicine, like Ayurveda from India and Chinese Medicine, stresses eating seasonally because of the way our bodies have evolved. When we are in tune with the environment, we can heal and then maintain our wellbeing. Most importantly, eating locally grown food in season is much less expensive at both ends of the marketplace transaction.
For example, my friend, Mary, who milks cows and raises grass-fed beef and pork, has few to no marketing expenses. I see her at the Farmers Market where I and many others buy individual cuts and put in orders for bulk beef. Before selling directly to the consumer, Mary had to settle for what cattle futures were the day she shipped steers to the feedlot. Now she can sell at a price that keeps her profitable. Would you believe Mary sold bulk beef for the same per pound price this fall as in the autumn of 2015? (No special favors. The price was the same for everyone buying her beef.) What other food has remained the same price over the same period?
Fruits and vegetables reach their nutritional peak at the same time they are harvested. This, conveniently, is also when they taste best. According to the University of California-Davis, as a bell pepper progresses from green to red it gains 11 times more beta-carotene and one and a half times more vitamin C.
Once a fruit or vegetable is harvested it begins to lose nutrients and taste within the first hour. The USDA’s Table of Nutrient Retention Factors shows frozen fruit, in most cases, is more nutritious than fresh fruit that was picked before ripening and transported from who knows how far away.
If you’re not familiar with Farmers Markets, call the local reference librarian and ask. If your community has 211 phone service you can use them, too. Most often, you’ll find something if you ask around. Local Harvest is a clearinghouse for small farms raising healthy plants and animals. You pop in your zip code and nearby farmers who register with them pop back at you.
With all the new things in the produce department these days it can be hard to tell if a certain fruit or vegetable is in season. You can find a produce person at the store and ask them. And don’t forget to make room in your budget to purchase organic produce on the Dirty Dozen list. I’ve read you can break down some pesticide residue with a brief (10 min) soaking in a sink full of cold water and about a quarter cup of white vinegar.
Questions? Comments? Concerns? Recipe requests? Let me know below.
Doesn’t matter if you are a back sleeper, a side sleeper or a toss and turner, something from this pillow roundup will fit your needs.
#1 Shoulder Pad Pillow from Shujian
$$$$ Very Expensive ~~http://amzn.to/2mDtAgi
This carefully crafted pillow protectively fits cervical vertebra to resolve pressure and significantly eliminate head, neck, shoulder, and back pain. It is made with hydrophilic cotton, a new molecular structure combining the advantages of latex and memory cotton that disperses weight and automatically adjusts for the best support.
Remains a Constant Temperature
Breathable Heat Dissipation
11 x 11 x 3.9 inches
#2 Siberian Goose Down from Between The Sheets
$$$ Expensive ~~http://amzn.to/2DfL10H
Manufactured by the same Danish company producing down comforters in a 90% white Siberian goose down & 10% feather blend. A unique feature of these pillows and comforters is a no-mite protective fabric which keeps dust mites from penetrating the pillow. This provides a hypo-allergenic environment. Each pillow comes in a variety of sizes and fills to give gentle, medium, or firm support.
Standard Gentle 20″ x 26″ 16 oz
Standard Medium 20″ x 26″ 20.5 oz
Standard Full 20″ x 26″ 26 oz
Queen Gentle 20″ x 30″ 18.5 oz
Queen Medium 20″ x 30″ 23.6 oz
Queen Full 20″ x 30″ 30 oz
King Gentle 20″ x 36″ 21.5 oz
King Medium 20″ x 36″ 28.2 oz
King Full 20″ x 36″ 37 oz
#3 ZEEQ Smart Pillow from REM-Fit
$$ Expensive ~~ http://amzn.to/2B4lKRV
This tech-heavy memory foam pillow has an adjustable foam fill and a high-quality pillow cover made with moisture-wicking Tencel botanic fiber. It will gently vibrate to alert you to change position if it detects snoring. Multiple sensors send sleep data, such as movement and snoring, to the ZEEQ app so you can catalog sleep cycles and analyze sleeping habits. Built-in motors centralize a vibrating alarm to the user’s head and neck when the analysis determines it is the optimal time in your sleep cycle to awaken.
The onboard personal sound system, evenly dispersed between 8 internal speakers encased in the memory foam core, ensures that only the user can hear. A music sleep timer automatically shuts the system off after a predetermined time. Naturally, there is a remote allowing you to power on, change volume and more if your phone is out of reach. And, finally, this smart pillow connects with Amazon Echo and has a two-week battery life.
What more could you possibly want in a pillow? 😉
#4 Pillow of Health from Pillow of Health
MizEllie’s Best Buy ~~ http://amzn.to/2B45v7p
The PILLOW of HEALTH is easily customizable to adjust to your comfort level…even if it is different each night. Medical-grade cluster fiber fill and foam do not to contain harmful chemicals and are approved by an independent laboratory.
The high-resilience foam is antimicrobial, hypoallergenic and free of harmful chemicals. Due to its high-density cell structure, it is naturally resistant to mildew, fungi, and dust mites. It can be washed and dried at high heat.
The outer layer is constructed from a moisture-wicking fabric that is 40X more breathable than other pillow fabrics. Users report they never have to wake up and flip the pillow over to get to the cool side.
#5 Bamboo Covered Memory Foam Pillow from Hotel Comfort
Affordable ~~ http://amzn.to/2D66ypk
This pillow is filled with 100% polyurethane shredded memory foam. The combination of this shredded memory foam and the bamboo cover allow the pillow to breathe and stay cool. It conforms and adjusts perfectly to your head and neck and is great for back, stomach or side sleepers.
I own two of these pillows. They are quite full but compress easily. They also remain cool, but as yet I haven’t had them for a summer. It is a good buy, but if I were in the market again, I’d get #4.
Vikki blogs on The Mighty, a wonderful site where people with chronic conditions can share their experiences. Here is her story about staying well in the holiday season.
I love Christmas. I’m not religious at all and rather prefer the term “Yule” to Christmas, but I do love the festive season. I love the tradition of bringing the outside in; during autumn, we string up autumnal garlands and fairy lights and bring out little wooden animal ornaments. Our house transitions from summer to winter in stages, until we finally put up the tree. I love the food and the warmth, making plans and spending time with people. However, this time of year is also incredibly busy, which can be difficult when you live with a chronic illness.
Fibromyalgia is, in a nutshell, categorized by chronic pain and fatigue. It has been almost 18 months since I was diagnosed, and the treatment plan has been going well, but hectic periods like this remind me that I have to listen to my body, and make compromises.
From now until the new year, every weekend is booked up with something. Lunch with family, dinner with friends. Even getting my nails or lashes done requires consideration about my schedule, and what I feel I can cope with.
My birthday is a week before Christmas. I don’t usually do much for it since it’s hard to get people together during this period, but this year, some friends are coming up from Cornwall to spend the weekend with us.
I’m not saying I don’t enjoy all of these things, but it can be draining. When I’ve had a full week at work, I collapse on Friday evenings, usually in bed by 8 o’clock. Most weekdays I’m in bed by 9 or 10 at the latest, determined to get a full eight hours sleep, ready for the next day at work.
My medication makes me drowsy. In fact, it can exacerbate some symptoms of fibromyalgia, leaving me with no option but to go to bed. This is another thing I have to consider when planning events – can I take my medication at my usual time, or should I wait until later, to ensure I can still function during the event?
I think a lot of people who don’t live with a chronic illness can find all of this difficult to understand. Everyone gets tired, but chronic fatigue is a whole different story. Some people don’t always give me the benefit of the doubt, preferring to get annoyed and take it personally when I cancel plans. This can put a strain on relationships, and leave me even less inclined to expend my limited energy on spending time with them.
Living with a chronic illness can feel like a vicious circle, and although I can understand why people might get irritated when I cancel plans, what they have to understand is that it isn’t always my choice. My immunity is low, so I get ill easily, and this time of year is the perfect bug-catching season. And if I’m in too much pain or too tired from a full week, I cannot – and will not – force myself to make a lunch date to spare your feelings. My health will always come first.
For this reason, Christmas day is a quiet affair in our house. Nobody comes around, and we don’t go out. It’s just us and our cats, no pressure, just relaxation. We always make an effort to see other people during the festive season, but we spend Christmas day alone, recharging, enjoying our little family and our peaceful home. I learned a long time ago that I have to be firm when it comes to my health, whether that’s physical or mental, and sometimes you have to put yourself first.
For many, holidays like this are full of stress and drama. We force ourselves to be pleasant to family members we don’t like, we get ourselves into debt trying to buy everyone a present, and we try so hard to live up to the expectations of others. We forget about ourselves, what we need, and what makes us happy. I decided a few years ago that my favorite holiday would be spent the way I want to spend it. I love seeing distant friends, getting together around a table and catching up. I enjoy spending time with family, and going out for walks, enjoying the lights and decorations.
This year, we’ve decided that we don’t want presents. We’re saving to buy a house, so close friends and family are welcome to contribute to that, but we’d rather people saved their money and joined us for a drink or a meal, and spend time rather than money. It’s easy for me to buy a bunch of rubbish on Amazon, get them to gift wrap it and ship it straight to them. It takes money, but not effort, and I’m more interested in the latter. “It’s the thought that counts,” is our motto this year. So I think we should all take a moment, whether we live with a chronic illness or not, and appreciate the time people give us during this holiday season because sometimes, it can be the greatest gift they can give.
Paige is a staff member of The Mighty, a wonderful, caring digital health community created to empower and connect people facing health challenges, chronic illness and disabilities. This article was originally published on www.themighty.com last August and reprinted here with permission. So here’s Paige and the Mighty community. I hope you enjoy reading and identifying with it as much as I did.
Unless you’ve experienced it yourself, it can be nearly impossible to understand what someone with a chronic, invisible illness goes through on a daily basis. Not only can the physical symptoms be painful and exhausting, but they can take a toll on your mental and emotional health as well. Guilt, anger, depression and isolation all too often accompany fighting a daily battle not many others can “see.”
In response to the physical and emotional aspects of living with an invisible illness, many people tend to develop certain “habits” or behaviors that help them manage their condition and its effects. We asked our Mighty community to share the “habits” they’ve developed – good or bad – from living with invisible illness. Maybe some of the following will sound familiar to you, too. Let us know how you cope with illness in the comments below.
Here’s what the community shared with us:
1. “I over-explain when asked about my health, and consequently my weight. I also avoid social situations, out of sheer exhaustion, preferring online socializing instead.”
2. “I always look for a chair when I’m out, as standing up for too long exhausts me. I carry water with me everywhere, as I get dehydrated easily.”
3. “Saying ‘no’ to almost everything. It’s much easier to change to a ‘yes’ later than having to backpedal to a ‘no’ later. This was a hard thing to learn because I want to do all sorts of things, but I recognize I am limited by my illnesses.”
4. “Not exercising – ever. Even though I know it would help me, I’m too busy ‘saving up my spoons‘ to consider throwing them away at the gym or even on a walk around the block.”
5. “I have a terrible habit of not finishing tasks. I get halfway done and I stop to take a break with the intention of going back and I just never do. It really annoys my husband.”
6. “I live with music constantly playing through an earphone. By keeping the music playing it helps me filter other sounds and feelings. It stops over-stimulation. It lets me feel calmer in situations that cause me stress above my pain level.”
7. “Each morning before I get out of bed, I lay there taking stock of my physical aches and pains. Reach for my topical pain relief and rub it in. A few stretches and then I get up (usually limping) and start my day.”
8. “I constantly apologize even if I haven’t done anything. I guess part of me hopes if I apologize enough, it will make up for my not being able to do as much as someone else my age.”
9. “I journal everything from what I ate at what time to when I started getting a headache then when it got unbearable and if I left the house and for how long so I can look back and see if there are patterns that caused flare-ups and keep track of what treatments have caused side effects and which ones have helped.”
10. “I avoid scheduling and going to regular self-maintenance appointments such as the dentist and the eye doctor because I’m so overwhelmed with all of my other health and medical stuff going on.”
11. “I smile a lot. I once got hit in the face with a soccer ball during practice, and I kept smiling with tears running down my face to let everyone know I was OK. I would rather [struggle] in silence than for someone to worry about me so I developed a great smile to distract and deceive them. My eyes give it away though. I can’t always hide the exhaustion in my eyes.”
12. “Stashing medicine (and usually snacks) everywhere I might need it. There’s even a bottle of ibuprofen stuffed between the cushions of my couch.”
13. “Multitasking – my chronic illness drains my energy, so when I have a flare-up or a bad day, I’ve learned to do as many things as I can to make my bad days a little easier.”
14. “I don’t eat dinner. If I eat too late in the day, then I don’t sleep well with the pain. I have battled severe Crohn’s disease most of my life. Every meal is carefully considered and every meal is a potential pain bomb.”
15. “I pop my neck, back, knees, elbows, fingers constantly, because it helps ease the pain.”
16. “I make excuses as to why I can’t stick with plans or go to functions when I’m not feeling well instead of just telling them the truth, that I’m having a bad day, because I don’t want to become ‘that’ conversation.”
17. “There are little things, like carrying my phone and water bottle literally everywhere with me. There are bigger things, like habitually secluding myself when my anxiety and self-disdain start to take over my mind, and often it will spiral and worsen because I feel too scared and ashamed of myself to reach out for help.”
18. “My first reaction to a vacation or upcoming trip is to think of every possible way my chronic illness could ruin it (sometimes it does), but I know the self-fulfilling prophecy doesn’t help.”
19. “Allowing my independence to become vulnerable and letting my husband care for me, like helping bathe me in the shower because my skin hurts just with the water, my body hurts to stand in the shower and I am so very fatigued, I do not have the energy to stand up. It is quite humbling, but he shows me every day he is there for me whatever the struggle may be.”
20. “I seclude myself. I keep a lot of my emotions to myself and don’t really partake in much [out of] the fear of causing a flare.”
21. “Due to brain fog or fatigue, I second-guess myself often. Was that right? Did I say that right? Did I say the right things? I used to be so quick on my feet when it came to a conversation and now I feel like I’m always two steps behind. Because of this, I try to be more aware and listen more before I speak. I try harder to be more thoughtful and less quick to judge something.”
22. “Having to overshare about my condition to have it taken seriously. I have endometriosis which causes debilitating abdominal pain and cysts, but unless I go in depth about my condition most people will just assume I have period cramps.”
23. “I apologize constantly, often for things I know aren’t my fault and I know I can’t control.”
24. “It’s becoming easier to say ‘no’ when I simply don’t have the energy to attend a dinner, do a task, etc. When I was first diagnosed with fibromyalgia, I thought I could just push through the pain and fatigue and not let anyone know how poorly I felt. This was dishonest not only to others but to myself. I’ve discovered how crucial self-care is, whether that means a nap if I need one, taking daily supplements and vitamins or politely declining an invitation to dinner. On the flip side, I take advantage of those days when I feel better but keep in mind not to overdo it or I will pay for it later.”
25. “Not cooking at the end of the day because I just hurt too bad, even though we can’t afford to eat out. I eat so much pizza it is ridiculous because that’s all that delivers.”
26. “When I’m out at a social gathering, I flit from person to person and group to group. This has given me a social butterfly persona. In truth, if I stop moving or sit, I may be unable to get back up or even have to go home. My muscles tighten up and I can’t move properly. Once I sit down, I’m finished.”
27. “Attitude checks. I will allow myself a pity party when it’s deserved, but only for a short time, then it’s time to check my attitude because it is only by way of ‘one step in front of the other’ will I get to where I want and need to be. I have to be as positive as I can not only for myself but also my family. A good outlook is how I make it through each day.”
28. “Defending everything I do. It’s a terrible thing to do. If I’m walking with my cane, I defend it. If I park in [disability] parking, I defend it. If I sleep during the day and stay up at night, I defend it. It’s a habit I want to break, but I’m too afraid to.”
29. “Seeing the value in every single day. Cherishing every opportunity that comes my way. Being motivated to do so much because I know I could lose more function anytime. Not seeing people as they appear… respecting that anybody could be going through a challenge, so showing respect and kindness to everyone, even if they aren’t kind to me. Recognizing it may just be a bad day or something unknown they are battling.”