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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Relaxation

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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Patience and Empathy

I have lost some of my patience. I am more easily frustrated. Especially when trying to do something like take my boots off. I can empathise with a three year old throwing a temper tantrum.

Empathize. Not sympathise, not understand, not ‘comprehend the reasons’. Full-out empathize. I know just how frustrating it is. I know how it feels when your only recourse feels like crying out. That primal urge when words either fail, or just won’t do.

I always thought patience was really just seeing the world through a wider lens. But when I’m frustrated and loose patience, and see the world through a three year olds eyes, I feel more aware of the world. Of the struggles others face. Maybe not in the moment. Those moments are anything but eloquent. But having those feeling, thoughts, experiences has widened my world view, not closed it.

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Hope

Do I still have hope? Of course I do. But I don’t always like to admit it. I think most of us don’t. Admitting to hope can sometimes feel like exposing your deepest secret, one which, in this day and age, is so easily used by others to try to sell you something- be it an idea or a thing. But we all have hope. Deep down we all do. Even those who are adamant that this condition is irreversible, deep down must have hopes to the contrary. Living life, for the rest of my life, like this, with no hope of any improvement? Nope. I don’t believe a human could.

Even in the most extreme places, hidden, deep down, there is hope. That is what gets you through. And if hope for yourself has faded, hope for a better future for your children can get people through. But without a single shred of hope? I don’t believe it is even possible.

I think it is hope that can shield us from the worst truths. A friend asked on facebook why nothing was being done about climate change – despite so much evidence, people, esp. lawmakers, pointed to a lack of evidence. Perhaps it’s not being able to see the forest through the trees. But I think that doing something about climate change would be admitting to climate change. And admitting that climate change is at least likely, is to loose hope that it isn’t going to happen. It seems that here in America, where hope seems so important, that Americans loosing hope is a fate more feared than that of not being prepared for apocalyptic catastrophes. While I don’t hold out hope that climate change isn’t real (sadly I know too much), I do hold out hope for my condition. In some ways, not knowing- how long, how bad my CFS symptoms will last, if it is possible to be cured- keeps me hoping. Of course I hope. Wherever there are gaps in knowledge, there will always be hope. And, at least for now, I embrace it.

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Dogged questions in my brain

I have been doing more research on CFS/CFIDS/ME, and the more I learn, the less I feel I know. So many questions banging around in my head like something metal in the dryer- clang clang clang.

is CFS catchable? Can I give it to those helping me?
is it curable?
is there any point in trying out CBT?
are there other treatment options with better outcomes?
what kind of support is available?
will I have to live like this forever?
i am reading about permanent damage caused on various systems in the body, can I afford to sit around doing nothing?
can doing the wrong thing lead to more or greater damage?
how do we know the damage is permanent?
do different causes or “types” of CFIDs have different outcomes, respond better to different treatments?
who is doing research, what is the most recent understanding we have?
what kinds of and how rigorous were tests/trials of different treatments?
with a mildly low immune system should I worry about the flu?
is there anything special I should be doing, avoiding, taking?
what should those who want to help me be doing?
is it better to ask for help, or do it yourself?
what happens to your soul when you let everyone take care of you? I feel like I might just die.
what do others do to combat the helplessness?
what about finances- is there any help? what do others do?
how do i figure out a new “life purpose”?
I am afraid to try some new ideas/plans for the future I have because if I fail, I am afraid there are no other options left. How do I conquer this fear when I cant remember resolves day to day? or even hour to hour.
how to you learn to forgive yourself for the silly mistakes- leaving wet washing in the machine for days, going to the kitchen 6 times and coming back with anything and everything but what you really needed, spilling water all over myself when I “forget” how to drink? Modern day ‘super moms’ can be excused through their busy, hectic lives. Mine life is beyond placid in comparison.
How do you learn to get over feeling upset by your body, your mind- one that made it through college but now cant remember the word for dishwasher, water, or cup. Gets a workout from doing up laces. Or your bodys failings, like dropping your 6th glass, shakes so bad you can barely eat, or when all it wants to do is lie on the floor in a doctors office, mall, or grocery store. seriously how?
how do i keep myself from going crazy with all the should haves, should dos, guilt, and comparisons?
how come CFIDS is still so unknown?
why are chronic conditions treated with such distain?
how can so many suffer with so little help, compassion, validation, or understanding?
why do so many of us feel ashamed, embarrassed to share our story, diagnosis, experiences very readily?
why is it ok for doctors to treat me so rudely? (I wish I was talking about a single experience- but in my first hand experience, rudeness from trained doctors appears to be greater epidemic than CFS).

And who can answer my questions? I don’t even know where to start.

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