Worth it

There are times in everyone’s life where they have to stretch themselves, be it financially, emotionally, time wise, or even taking on extra stress. Sometimes it’s for something we have deemed “worth it”. Other times it’s an unexpected life event. After a while something gives and we go back to the amount we can deal with- this new state of being isn’t sustainable. We just can’t live without emotional support or respect, physically exhausting ourselves everyday, or feeling stuck in a downward spiral.  Not indefinitely. (I mean “can’t” in more than just a physical, breathing and blood pumping, sense, but in an emotional and/or mental sense- a “whole being” sense).

Life with CFS means my stretching moments are of a smaller scale than others’. When I stretch, it’s to do something most people do day after day, month after month. I relish the self-induced stretching, because it’s usually to do something that makes me feel normal and part of the world. And when life throws a curve ball, it usually takes a bigger toll on me than it would on someone without CFS. Like getting an infection, or a constantly changing end goal (or doctors appointment).

Over the last few months, I have purposely stretched for a few events that I deemed “worth it”. My 10 year uni reunion. My brothers wedding. I am currently taking a staggered, six-weekend permaculture course (where each weekend is as full and stressful as the reunion and wedding) where I will get certified to design permaculture gardens. And I am hoping to attending a friends wedding this month.  I have learned a good deal from these times of stretch, and have suffered from them too. For weeks afterwards I deal with symptom flare ups, and need outside help (such as acupuncture) just to help my body find it’s way back to my new-normal again.

But learning doesn’t equal acceptance. I get frustrated. Angry even. I keep hoping the next event won’t have the same devastating effects to my body and health. A limp pool of flesh is hardly an existence. And I find myself torn. Do I avoid all events and feel the full, crushing weight of giving up (different from letting go), or do I continue to pay the physical admission price for the emotional joys of being able to take part?

I have (carefully) chosen to pay the price. Obviously I have to prioritize. Though explaining that my health comes first is not always easy. Making sure I make it back to new-normal after every event is the way I justify my excursions. If I can’t, my fear is that a second blow would have devastating, long lasting (possibly irrevocable) implications. Never knowing what’s around the corner health wise is terrifying. I could wake up tomorrow bed bound. Or maybe in a few months I’ll be able to do more than I can today, and perhaps a few years from now I’ll be able to take part in so much more of life. Living with hope and fear is not always easy- weighing risk against possible gains- especially with so much at stake. But when choosing when to stretch- make sure it’s for hope’s sake, not fear’s.

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Salt pickles

The first time I tried making salt pickles (or fridge pickles) they came out way too salty. Likely because I used the wrong cucumbers; pickling cucumbers are not common in the UK (in fact I never found any).

Back in the US, pickling cucumbers are all over the place this time of year! And good thing too because I love pickles.

Here is the recipe I’ve adapted. It’s my go-to recipe for pickles and I’ve already enjoyed a few jars this year. They’re GF- they even don’t have any vinegar (vinegar is usually made from rye and corn), and they are low FODMAP because I’ve taken out the garlic.  Enjoy!

Salt Pickles (aka quick pickles or fridge pickles)

4 quarts water

6 Tablespoons coarse kosher salt

18-20 Kirby cucumbers, or any pickling cucumbers, well washed

2 Tablespoons of whole spices (I use a mixture of coriander, fennel, mustard seeds- in descending order)

1 large bunch of dill, including any flower heads and even seeds, washed (preferably home grown!)

In a large pot, boil the water with the salt, stirring until the salt is dissolved. Remove from heat and leave to cool for 10-20 minutes.

Prepare wide-mouthed jars by running them through the dishwasher or boiling them and their lids.

Cut the tops and bottoms off of the cucumbers (to fit the jars you have) and slice into 8, length-wise slices. Pack the cucumbers vertically into the jars along with the dill and spices, tightly-pack each jar.

Fill the jars with the salted water (brine) until the cucumber spears are completely covered. Put them in the fridge and wait 1-3 weeks until they are pickled to your liking. These are a very mild flavored pickle, and will still have a little “cucumber” taste. They will also stay pretty crisp.

If you can’t wait you can also try the following: “Cover the jars with cheesecloth, secured with rubber bands, or loosely with the lids. Store in a cool, dark place for 3 days. After 3 days, taste one. The pickles can ferment from 3 to 6 days. The longer the fermentation, the more sour they’ll become. Once the pickles are to your liking, refrigerate them.”

Adapted from Arthur Schwartz’s Jewish Home Cooking’s “Kosher Dill Pickles”

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Currant coulis and meyer lemon sorbet

Working in a community garden has given me access to fruits and veggies I don’t have room to grow in my containers. Though plenty of sources state you can grow squashes like courgette/zucchini in a container- personally, I have never had any success. Those are in full harvest mode at the community garden and I have already enjoyed a few.

Recently the currant bush was ready to pick, and we got a good amount out of that one, shaded bush (about a cup of berries). If we split that up between us though, we would each get little more than a garnish. So I volunteered to take them home and make something delicious. No pressure then.

A few days later, some classmates were working on a pergola in 90F heat in the dead of the day. I knew I would be no help with the manual labor (more than likely you’d find me lying, passed out on the ground after 5 minutes in that sun), but I realised I could help in another way- refreshments. I whipped up a half batch of this raspberry and red currant coulis (a strained, fruit “sauce” for desserts). I initially purchased some lemon sorbet to go with it as I was out of energy. But later that week I whipped up a double batch of this meyer lemon sorbet, and the combo was fabulous. Both promised to be sweet and tart. Despite all the tartness of currants, the sweet fruitiness of the coulis really calmed the tart of the sorbet- so don’t be stingy!

Both recipes are pretty easy. And if you leave the dishes to soak to clean later (or have someone else do the dishes!), they aren’t too energy intensive. In fact you can do them in stages- heat, leave to cool, transfer to the fridge, and finish it off (ice cream maker or strain) when you have had a rest. And once in the freezer, ice creams and sorbets last quite a while- so can be made well in advance. So make a double batch like I did! (in fact right now in the freezer I have raspberry sorbet, coconut cherry ice “cream”, and the meyer lemon sorbet. Sadly we already finished off the blueberry mint, and I gave my brother all of the mango coconut. I think the ice cream maker attachment has paid for itself by now!)
What cold treat have you made this summer to keep cool?

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DIY plant markers

There are so many different DIY herb marker ideas on the internet today, it’s hard to choose just one. In my own garden, I have happily gone without. Except those times when it was my husbands turn to go out and pick some herbs and I had to describe the herb, or which pot it was in. But clearly it did not bother me enough to warrant making some signs.

These days I am taking a sustainability class at a local college and working in the attached community garden. There are so many of us, that information doesn’t always seem to trickle through. Turns out I know a good amount when it comes to herbs. But even I didn’t know what winter savory looked like (or rather didn’t know the name for winter savory when faced with the plant). And today I found myself pulling out an awfully large weed, only to remark after pulling it- doesn’t that smell just like horseradish? Oops.

I have finally succumb to signage. It’s not that I didn’t want labels, it’s that I knew it would take a lot of thinking to come up with something just right (and did I mention it need to be pretty much free). The markers have to be tall (to be seen from the path and to work with tall, bushy plants)- so that rules out cute painted rocks, or short herb markers. And it has to be made from things we already have or free things (like things that would otherwise have gone in the trash). We have lots of bamboo stakes, and those can be cut to varying lengths to accommodate all sorts of plant heights, so that was a great starting point. In fact, I really liked this idea I came across on pinterest:

But where to find all the wood for the label part? Hmm. I thought about stealing lots of paint stirrers- but stores have their logos all over them these days, and don’t usually leave them out anymore (too many crafty people maybe?). The last box to check for the plant markers – they needed to be able to withstand some weather. They would be outside all summer, maybe even year round in the perennials. And/or reparable or replaceable. So if not wood, then what?

It took me a long while to come up with my answer, but when I saw the water jug in the recycling bin, it came to me. I tested out some waterproof, oil based pens, and a sharpie on the plastic. The both passed the water proof test in the sink, but I liked the look of the sharpie best.

Putting them together, in comparison to designing them, was relatively easy.  Here’s how I did it:

Materials-

-empty plastic jug(s), preferably the slightly cloudy kind

-bamboo stakes (not old dried out ones)

-twine

Tools-

-small wood saw

-small chisel

-hammer

-oil-based water proof pen or sharpie (depending on the plastic you use)

-heavy duty scissors

-glue

How to:

Cut the bamboo to the length you want, remember a few inches or more will go into the ground. At the top start sawing straight down the center until you have enough bite for the chisel. Place the chisel in the grove left by the saw and hammer until you start to split the pole (about 3″ down from the top). Repeat with all the bamboo (make one for each marker).

Using the heavy duty scissors, cut the water jug. You want strips large enough to write out the herb names (practice on a piece of paper), and leave enough room to place the end into the bamboo slot. Next write the names on the plastic strips with the pen or sharpie and let dry (don’t forget to test a patch for waterproof-ness).

With the help of the chisel (if needed), open up the bamboo slit and slide in the plastic strip (with the plant name right side up!). Repeat with all the bamboo and labels. Use the twine to keep the bamboo and label together. Finish off the ends with glue if needed.

Viola! Enjoy your finished herb and plant markers.

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The gardener in me

Oh how my garden does grow. Everywhere I go I leave a trail of plants. It started as house plants in my dorm room (spider plants mostly), but it soon as I had even an ounce of outdoor space to call my own, my garden expanded (exploded really) into a container garden of herbs, flowers, and veg (all grown from seed too). I love experimenting, tinkering, and sitting idle amongst my plants. So really it should come as no surprise that I consider myself a gardener (least of whom myself).

Seedlings growing

But it was a surprise. “Me? oh no, but my mother is a gardener”. I lived by comparison, I was not the gardener my mother is, so I assumed that made me no gardener at all. I figured I’d never know as much as she did, and I liked different things; she likes landscaping and flowers. Turns out I’m more of an herbs and veg kinda gal, with at least one foot in the eco-friendly/sustainability side of things.

Silly as it seems, defining ourselves through comparisons is something we all do. I have come to realise- in realising how important gardening is to me- that comparisons don’t mean jack. How much something means to you, even if you only do that thing occasionally, is all that matters. Discovering what matters has been an important step in my journey. It has helped make priorities, goals, and start building a life that is right for me.

More than that, working in the garden; watching things grow, tending for living things, getting my hands dirty; I feel important, connected, useful. It has allowed me to care for something else when at times my life seems consumed by being cared for. I think gardening, growing things, can be incredibly healing.

Go ahead, try it.

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Labels and compassion

My mother had red itchy spots on her back that made her miserable. How could she be this much of a wimp over stupid mosquito bites? Flash forward a few days, and the diagnosis of shingles had completely changed her attitude. She was happy to have shingles. But why? Because she had now allowed herself the right to be in pain. To take breaks, rests, but most importantly she thought about her condition in a whole new light. She probably even changed her self-talk.

It’s funny (or sad really) how we put so much of our own power and self worth into labels. The pain didn’t change, but the label did. She was experiencing more pain than she deemed appropriate for mosquito bites, and that made her miserable. She experienced less pain than she deemed appropriate for shingles, and that made her happy(?).

But it is more than that, surely. Because society as a whole puts a lot of faith in labels. We give very little sympathy for mosquito bites- just suck it up, but are very sympathetic towards shingles. My mom’s pain was the same despite the label- but sympathy from others is not based on the pain but the label.

It made me think about my own journey- how when first faced with an ME/CFS diagnosis I dismissed the idea entirely. My pain was not from some “made up syndrome”, my pain must have been from something “really serious”. It wasn’t until my concept of ME/CFS changed, that I came to accept the diagnosis. And in a strange turn- my new doctor was less willing to grant me that diagnosis and I ended up having to fight for it. What was now so important about the label? I knew I had CFS, but why is it so important for an official diagnosis? Because of two things- we care what other people think, and society puts so much faith in western medicine- what someone tells us they are experiencing needs to be verified by a professional to be believed.

These days the CFS diagnosis is a rare type of diagnosis- in that is based on what the patient tells the doctor, not a test result.  It can be very difficult for a doctor to feel comfortable making a diagnosis not based on something as black and white as a test. As medicine progressed over the last 100 years, our dependence on tests has led to a lessening in doctor’s abilities to diagnose on symptoms alone. We have lost faith in self-described symptoms- not just in the doctor’s office, outside of it to. It seems we have lost the ability to even believe our own symptoms as either real or worthy of even self sympathy. Perhaps if we gave ourselves more credit, we could reverse the trend, giving more sympathy towards others too. Maybe the world would be a more compassionate place. Couldn’t hurt to try.

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Celebrating the little things

I am so acutely aware now just how important it is to celebrate the small wins. In fact I have been thinking that one should think about how much time and energy is put into negative thoughts, worries, talking bad about yourself or others, etc, and put equal amount of good thoughts, self-congratulations, building up others’, etc in any (and every) given day. The way that the BBC news is supposed to give equal air time when covering the different political parties in upcoming elections. The premise is that if you only ever hear yourself saying bad things about yourself, eventually you’ll believe them. If you can go above and beyond the one-to-one ratio, and think three good things for every bad- then you’ll be in the top of the class ;)

Anyways, here is my celebration of the week. This week I made (myself or with help): kung pow chicken, BBQ teriyaki (and a killer, homemade teriyaki sauce it was if I may say so), raspberry lime sorbet, asian noodle broth with fish, pad thai with multiple fixings, chocolate chipotle cake with a chocolate drizzle, and a carrot cake with coconut glaze topped with toasted coconut. Most of the recipes (bar two) were brand new (and required adapting to my diet), and most were amazing successes (a couple were good, not great). It feels like the old me, the one that loved food, making food, and trying new recipes, is back. Whether or not she is here to stay- I am so happy to see her.

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Learning to love “as is”

I watch my mom from the porch as she hastily plants yet more hostas in her shade garden. And I realize, she has no idea how to relax. Each break she takes- to drink water, recover strength, get out of the sun- each break is just a time to review her to do list.

She sees her garden not for it’s beauty, but for what it is lacking. What needs fixing. For what can be done. Moving plants here to there, buying new, filling in gaps, and replacing those that didn’t make it through the harsh winter are thoughts racing through the tracks in her mind. Some find solace in the garden, find weeding meditative, enjoy sitting and admiring the beauty. After all these years, my mother still replies to compliments with “yeah, but I have plans to move that there and then…”, never “thank you, I love the way it looks now too”.

An inheritance I once eagerly took on as a teenager. Today it is a way of thinking I struggle against on a daily basis. I find enjoying things as they are at this very moment a difficult task. I feel more comfortable fixing what is wrong, than enjoying the rewards when it is fixed. A cycle emerges as I plunge into yet another to-do without reaping the reward of a job well done on the previous task. I find fault with things- just to find something to fix, something to do. After a while nothing was immune to that kind of scrutiny. Learning to relax, go with the flow, enjoy life, people, and situations as they are have been some of the most difficult tasks I have ever under taken. And they are a daily to-do. As I slip back into the could-dos, should-dos, and nit picking, I have to consciously remind myself to breathe. To let it go. Doing less is much harder than ‘try harder’ ever was.

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Not knowing

I am feeling annoyed. This is not a new thing. It comes and goes. I wrestle with it, and then there are days and weeks where I don’t even remember it exists. Sometimes I get tricked into thinking I’m over it. Past it. Worked through it. Then in pops up. Sometimes just randomly, sometimes as a side effect of pain. Sometimes when reality sets in. All those feelings of doubt, uncertainty, frustration, annoyance, impatience. Feeling trapped in the ‘not-knowing’.

I have no idea what my future holds. Will I find a way to remission? Or is this the best it will ever get? Or maybe it will actually get worse, much worse? Each option holds a different life I would put in place. I can boil it down to this: do I concentrate on the small joys, or work hard towards a larger goal? I feel like I would not be able to deal with the disappointment if I had to give up half way through my long term goals if the improved health these goals depend on did not materialize.

Sometimes the stress of thinking so far ahead hurts. Yet at other times, sitting around feeling like nothing is happening; nothing moving forward- goals or health wise- aches even worse.

I am frustrated that things are moving too slow and too fast at the same time. But mostly I am annoyed at not knowing. I envision at least two different lives, yet only have the energy to work on one. If I set my sights too low, I might get bored, depressed. If I set them too high I may wear myself out, I may have to live with the disappointment in myself- knowing I was unable to reach my (perhaps unrealistic) dreams.

I would like to put all of myself, all of my energy into one goal, one “option”. I want as much knowledge as possible to be able to make that choice an informed one. I feel frustrated sitting here; it feels like I am waiting for answers that never come. I don’t know where to look. Who to ask. Do I search for acceptance and live a small but happy life, or do I cling to hope and risk everything to go big? I feel like I’m running out of patience with myself and others; I feel like I am waiting around. At some point, while waiting for enough information to make the choice will I just make a rash decision out of frustration? At what point is enough enough?

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14 Tips for making life with a chronic condition a little bit easier

In some ways living with a chronic condition is like getting a degree- you do research, read studies and papers, and experiment with what works and what doesn’t. After a while you feel pretty qualified; proficient in “living with chronic”. Here are some tips I have picked up during my “studies”. Please put any tip that works for you in the comments- because if I am studying, then you are my classmates and professors :)

1. Stay hydrated- drink only water, and filtered at that.
2. Get warm- my feet and hands are always cold. Thankfully there are lots of heat options- microwave heat pads, hot water bottles, electric… I have all of them. I love my microwave one for the day, and electric one for the night. Put a microwave or hot water bottle in the bottom of your sheets before you go to bed to keep your feet warm.
3. Stay warm with layers. Wear warm socks- layer those bad boys. I love my alpaca socks (because wool makes me itch), and layer them over other socks.

Alpaca Annie's socks £15-23 on amazon.co.uk

4. Ease your load. Get a robe for in the house- with large pockets to carry things around in- freeing up your hands. Added bonus- you won’t forget what you are carrying and put it down somewhere.
5. Keep on top of your schedule with technology. Get a device with an alarm- your cell/mobile, tablet, etc. Set it for anything you need to remember to do (ex. it’s time to make dinner), and set 30 minute timer for keeping you on task on forgetful/distracted days.

Mini ipad from $299

6. Stay comfortable. Pillows- big, small, tonnes of them. I am a huge fan of pillows to prop me up, keep me comfortable, and man do they help prevent bruises I used to get. Who cares if the men in my life make fun.
7. Get good shut-eye. Find a fabulous eye mask, wear it every night, and naps. If you get migraines, pop an extra one in your purse just in case.
8. Be prepared. Learn to use your freezer- double your recipes and freeze extras in individual sized portions for days you are too tired to cook.
9. Organize. I use charts… for everything. I write down what I ate, what pills I took, if I napped, etc. Without them I forget what I have already done that day, and yesterday? forget it.
10. Share your plan. An electronic calendar is super helpful- that way you can easily share it with those who need to be in the know, and can make appointments you need a ride for at convenient times to others. Bonus- They also tell you what day it currently is. I check it constantly.
11. Protection. Big sunglasses. Need I say more?
12. Again with the warmth. Scarves- I love the non-wool pashminas that you can fashionably wear indoors. Staying warm and looking good- check.
13. Be prepared. Make a few little to go cases of travel toiletries- tissues, pads, hand cream, anti itch cream, hand sanitizer/wipes, extra hair elastics, etc. If you might need it on the go, have it with you.
14. Refuel. Don’t forget about snacks- figure out what snacks are easy on the go, and make a plan. Buy extra, buy a tupperware container just the right size, make up portions the night before, whatever works. I need to eat at regular intervals and an appointment that goes longer than it is supposed to can put me out of whack- so I’m always prepared (In fact I always pack water, hand wipes, and a snack any time I leave the house- I use a special bag for them, and am now in the habit of taking that bag with me everywhere so I never forget)

Small Tellfresh containers $2.50-6.99 at container store

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