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

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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Why can’t I relax? I have tried meditation. I have tried naps. I have tried herbal tea, massage, acupuncture, setting a strict sleep schedule, yoga, visualization, ‘letting go’, changing my diet, being more honest, breathing techniques.

The more I try the more stressed I get. I feel tight and tense in my muscles. I feel anxious and trapped in a cycle of stress.

Is there something about CFS that makes relaxation difficult or even impossible? Are my wires crossed? When I try to relax does my body becomes stressed? Does one trigger the other? Do the hormones released from relaxing in the most people cause stress in people with CFS? Or maybe I’m just more in tune with my body and it’s reactions because of having CFS.

Whatever the reason, the stress is starting to become it’s own stress. I’m becoming stressed about being stressed.  It feels like I’m carrying a heavy load. And I just want to put it down.

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The spoon theory

I’m having a bad day. But explaining what that means isn’t always easy. I could try to list some symptoms, list off what I can’t do, or what little I can. But lists just don’t seem to convey the whole picture. How can I express how it feels? a long boring list lacks meaningfulness.

Yesterday I came across this great blog entry. Christine Miserandino has lupus. She shares a story of how she described what it felt to live with a chronic condition (that also requires patience, planning, and pacing) with spoons. It’s a touching story. And a fabulous analogy.

With that beautiful new tool, I can express myself more clearly with far fewer words: Today I woke up with less spoons.

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Trying to accept

Learning acceptance: it comes with no textbook, no standard path.
When I think I’ve reached acceptance, I realise I have not. Round and round I go. When I read statistics showing that there is only 6% chance I can recover, something inside me weeps. I realise I have not accepted. I still want a cure.
I have CFS. I will always have CFS. I hope I have a long re-mission period; I am still aiming for a life with less daily symptoms that I have now. But the possibility that a bad spell is just around the corner will always loom overhead. That is a hard pill to swallow. Acceptance feels like an admission of failure. Like a giving up of hope. I guess I’m just not ready.

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The little joys

It’s been 10 years since I graduated uni. I followed that path as long as it could take me. And now it’s time for a new one. What better time than recovery to change paths completely? While attempting to do the near impossible (beat CFS all together or at least live a more manageable life), I am taking a single class at my local community college.

This is so much more than a change of careers. It’s a test. To see how much of my brain works; how much information and ability still exists? Brain fog, confusion, and short term memory problems with CFS can leave one feeling pretty dumb. A difficult thing for a Mount Holyoke grad to come to terms with. (Me? Dumb??) But I did have doubts.

A lot was riding on the first exam. Would I panic? Freeze? Would my mind go blank? I worked harder than I ever did in uni. Even saw a tutor to help with the math- something that used to be my forte- that goes along with chemistry equations.

We got the exam back on Friday. I got an A. I more than passed my exam. I got every math problem right. My brain worked. A week later I’m still recovering. But I also am still rejoicing. What a relief, what a weight lifted off to know my brain still works. I am so proud so happy so relieved. If I could, I’d jump for joy. Inside I think I have.

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Anger and resentment

Some days my carers feel like captors.
My anger and resentment boils up. I stew and fester.
The world is against me. No body understands. No body cares. No body truly loves me. I am all alone.
My pain drags me down to this deep, dark pit. I am beaten and bruised. Raw. Abused. Tortured. My soul wails. And I reach the end of my strength. Defeated. Deflated. Depressed- emotionally pressed down into the mud.
My body echos the chaos in my head with aches, pain, bruises, nausea, and heaviness of it’s own. My battle with anger manifested in physical form. Or perhaps my physical battle with this unseen, pervasive condition plays out another, parallel battle in my mind. Strike that. For my mind. A war over a mind so beaten down. Like fighting over a city so ravaged by war not a single building still stands- what’s the point? What is the point?  I’m wallowing in self pity, wallowing in all the “cant dos”, the “I’ll never be normal”s, the “what’s the point of living like this”.

But it takes strength to hold onto anger and resentment. And my strength is all too easily depleted. A small solace. I watch the anger as it rises and falls. I watch the self pity come and go. They wash over me. The tide recedes once more. I am no longer a novice. I know not to waste my energy fighting with myself, to hold onto self pity. There is a teeny tiny voice in the darkness, “this too shall pass”.

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