Chronic Illness and Anxiety

When you’ve been diagnosed with a chronic illness, you may feel as if you’ve lost control over your future. The stress of learning to deal with doctors and specialists, coping with physical changes, and managing daily life can often lead to excessive worry or stress. Researchers have found that experiencing a chronic illness puts a person at increased risk for developing anxiety or an anxiety disorder. Roughly 40% of people with cancer report experiencing psychological distress that often takes the shape of excessive worry or panic attacks.* People with ongoing, or chronic pain are three times more likely to develop symptoms of anxiety.**

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The daily demands of living with a chronic illness continues to present challenges and generate anxiety long after the diagnosis has been given. Loss of mobility or other abilities can lead to worry about employment or financial concerns. Depending on others, worrying about becoming a burden or even intimacy with your partner may also be concerns. Some people are more easily able to adapt to the changes in their lives. Others may feel overwhelmed with anxiety and struggle to cope. Still others may be in limbo, unable to make decisions about their future.

The Most Common Anxiety Disorders are:

1. Generalized Anxiety Disorder (GAD) involves excessive and uncontrollable worry about everyday things, such as health, money or work. It is accompanied by physical symptoms such as restlessness, irritability, muscle tension, fatigue and difficulty sleeping or concentrating.
2. Obsessive-Compulsive Disorder (OCD) entails persistent, recurring thoughts (obsessions) that reflect exaggerated anxiety or fears. Someone with OCD often will practice repetitive behaviors or rituals (compulsions). For instance, obsessing about germs may lead someone with OCD to compulsively washing hands—perhaps 50 times or more per day.
3. Panic Disorder includes severe attacks of terror or sudden rushes of intense anxiety and discomfort. Symptoms can mimic those found in heart disease, respiratory problems or thyroid problems, and individuals often fear they are dying, having a heart attack or about to faint. The symptoms experienced during a panic attack are real and overwhelming, but not life threatening.
4. Posttraumatic Stress Disorder (PTSD) can follow exposure to a traumatic event, such as a car accident, rape, a terrorist attack or other violence. Symptoms include reliving the traumatic event, avoidance, detachment or difficulty sleeping and concentrating. Though it is commonly associated with veterans, any traumatic event can trigger PTSD.
5. Social Anxiety Disorder (SAD) is characterized by extreme anxiety about being judged by others or behaving in a way that might cause embarrassment or ridicule. People who have SAD have what feels like exaggerated stage fright all the time. SAD is also called social phobia.

Specific phobias are intense fear reactions that lead a person to avoid specific objects, places or situations, such as flying, heights or highway driving. The level of fear is excessive and unreasonable. Although the person with a phobia recognizes the fear as being irrational, even simply thinking about it can cause extreme anxiety. I personally am terrified of the Dentist, even though they treat me gently and with compassion. I have to take medication to help relax me in order to go for a simple cleaning.

Fortunately, anxiety is treatable with therapy, medication and complementary and alternative treatments (i.e. acupuncture, massage therapy, ). But when the focus is on the chronic illness, anxiety is often overlooked. That’s why it’s important to talk to your doctor about your emotional and cognitive health, and to speak up when you experience signs of anxiety.

Emotional symptoms of anxiety include:

  • Becoming easily agitated, frustrated, and moody
  • Feeling overwhelmed, like you are losing control or need to take control
  • Having difficulty relaxing and quieting your mind
  • Feeling bad about yourself (low self-esteem), lonely, worthless, and depressed
  • Avoiding others

Physical symptoms of anxiety include:

  • Low energy
  • Headaches
  • Upset stomach, including diarrhea, constipation, and nausea
  • Aches, pains, and tense muscles
  • Chest pain and rapid heartbeat
  • Insomnia
  • Frequent colds and infections
  • Loss of sexual desire and/or ability
  • Nervousness and shaking, ringing in the ear, cold or sweaty hands and feet
  • Dry mouth and difficulty swallowing
  • Clenched jaw and grinding teeth

Cognitive symptoms of stress include:

  • Constant worrying
  • Racing thoughts
  • Forgetfulness and disorganization
  • Inability to focus
  • Poor judgment
  • Being pessimistic or seeing only the negative side

 

What You Can Do

Challenge negative thinking. When you’re anxious, your brain may jump to conclusions, assume the worst, or exaggerate. Catastrophizing and ignoring the positives in your life may occur when you live with the challenges of a chronic illness. One way to manage anxiety is by being aware of the negative thinking, examining it and challenge the irrational thoughts. Counselors/therapists can play an important role in teaching you this important coping skill.

Calm your mind. Relaxation techniques can be an effective way to calm anxious thinking and direct your mind to a more positive place. Consider whether mindfulness meditation, yoga, or other breathing and focusing practices can still your body. Taking  time to relax, increases your ability to think objectively and positively when it comes to making choices about your health and life.

Find a good Doctor. If you take medication for both mental and for physical health, it’s important to that your doctors are aware of all your medications. Some medications may actually escalate anxiety, so it’s essential to work with a prescriber who can make informed choices that address both conditions without worsening either.

Find a support group. Managing a chronic illness can be a lonely job as it may be difficult for loved ones to understand the unique challenges. Support groups, whether online or in person are wonderful for creating community but also for providing information that can help reduce worry. They can also connect you to valuable resources for treating your illness.

Acknowledge successes. Anxious thinking about chronic illness can keep you from feeling that you have control over anything in life. It’s important to acknowledge all successes, both big and small. Keep track of the healthy things you do for your mind and body. Exercising, going to counseling, spending time with a friend–these can all help. Keeping these successes at the front of your mind can help you combat worry. They can remind you that you do have the power to affect your present and future.

If you think that you might have anxiety in addition to chronic illness, be honest with your doctor. Ask for help. Anxiety is highly treatable, so remember…

There Is Always Hope

*https://adaa.org/serious-chronic-or-terminal-illnesses
**http://www.health.harvard.edu/mind-and-mood/depression_and_pain

Chronic Pain & Post Holiday Blues

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Do you find yourself feeling more pain after the holidays are over? More physical pain seems natural because of all the running around that we do with Christmas and New Years and the extra work that happens to make the holidays special. What about the post holiday blues? Do you find yourself feeling more mental pain when the holidays are over? More depression, or more Seasonal Sadness? How do you manage that and where is it coming from?

Some of it comes from the Holidays themselves. Often, we project what we want them to look like instead of accepting the reality of what they actually are for us. We want the perfect family around the perfect tree with perfect presents and everyone getting along in perfect harmony. What happens instead is the stress of buying, decorating, cooking and cleaning all while appeasing children, spouse and family members who may or may not be speaking to each other on the big day. No wonder you’re left with a huge let down after the New Year rolls in.

Financial stress plays a huge role as well, once those credit card bills start showing up in January. Even if you swore you wouldn’t have a credit card Christmas or Hanukkah, chances are you’re still looking at some expenses that you weren’t expecting, and now you need to do some budget adjusting. That’s enough to make anyone feel blue. And if you’re one of the many people who put your entire holiday shopping on your credit card, you’ll be feeling the hit even harder.

The weather also plays a huge part in how we feel in the New Year. Depending on where you live, you could be seeing sunshine and cold temperatures, mild temperatures and rain, or bitterly cold and snow, or any combination in between. The days are short and darkness prevails. Seasonal Affectiveness Disorder is a real condition that deeply alters the lives of more people than we realize. Getting out into the natural sunlight is the best remedy, but the alternate is to use a special lamp to get the light you need to function properly during the winter months.

How else can you combat these Post Holiday Blues? Here is a list of suggestions that might help:

Limit alcohol – Now that the holidays are over, start to limit your alcohol intake, and try not to keep it readily available around your house. Drink lots of water to flush your system and get back to good nutrition.

Get plenty of sleep – Try to go to bed at a specific time each night. Being well-rested can improve your mood and help you feel ready to take on the day.

Exercise regularly – Plug in your headphones and pop out for a walk around the block a couple of times a day. A quick 10-minute walk will get your heart rate up and release mood-boosting endorphins.

Learn to say “no” – Overscheduling and not making time for yourself can lead to emotional breakdowns. Learn how to say “no,” and stay firm on your decision.

Reflect on the Special Moments – 

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Grab a hot tea or hot chocolate, sit by the fireplace, and reflect on what you loved about this holiday season.

  • What was the best conversation you had?
  • What was the most thoughtful gift you received?
  • What was the funniest thing that happened?
  • What was one disaster that turned into a blessing or a great memory?

Try Something New – New Year, new hobbies! Make up your mind to try something new this year. Take a class, return to an old hobby, or pick up a new one.

Make a Budget – No one likes to dwell on financial stuff, but vow to make a budget this year and then stick to it. You’ll be amazed at how much stress relief this can offer you when you see exactly where you money is going and how much you can actually save every single month. Buy software for your computer to help you, download an app or get a book to make it easier.

Volunteer –  If you can spare a bit of time each week or each month, consider doing some volunteer work in an area that interests you the most. From working with kids, seniors, or animals to helping with community arts and theatre, health organizations or your local Downtown Business Association, there are so many places that can use your help. Even just a couple of hours a month makes a difference when we all pitch in together.

Give Blood – Another way to help others, if you are physically able to donate blood, please consider giving. There’s nothing like being a Lifesaver to make you feel good!

Keep a Gratitude Journal – Each day, write down three things you are grateful for.

Can you come up with your own suggestions for this list to make it your own? If and when you do, share your ideas with your friends and in the comment section below. One thing I do want to remind you of is that if the Post Holiday Blues tend to linger on for longer than a month, you may want to speak to your doctor. You could be experiencing something more than just “Post Holiday Blues” and require proper medical care. Don’t ever be afraid to ask for help if you feel dark thoughts or deep depression. There is help available and absolutely NO shame in asking for it. I live with Bipolar Disorder and have to be very careful during and after the holidays that my mania isn’t triggered because I would go on shopping binges.

Remember…

There is always hope

 

Fifty Christmas Quotes

In the Spirit of the Season, here are 50 Christmas quotes to help bring good cheer to your heart during the holidays. Thanks to the website Daring To Live Fully for the list.

1. “I sometimes think we expect too much of Christmas Day. We try to crowd into it the long arrears of kindliness and humanity of the whole year. As for me, I like to take my Christmas a little at a time, all through the year. And thus I drift along into the holidays – let them overtake me unexpectedly – waking up some fine morning and suddenly saying to myself: ‘Why, this is Christmas Day!’”

~ David Grayson

2. “It’s beginning to look a lot like Christmas;
Soon the bells will start,
And the thing that will make them ring
Is the carol that you sing
Right within your heart.”

~ Meredith Willson, “It’s Beginning To Look A Lot Like Christmas”

3. “Christmas gift suggestions: to your enemy, forgiveness. To an opponent, tolerance. To a friend, your heart. To a customer, service. To all, charity. To every child, a good example. To yourself, respect.”

~ Oren Arnold

4.Christmas quotes

5. “Gifts of time and love are surely the basic ingredients of a truly merry Christmas.”

~ Peg Bracken

6. “Instead of being a time of unusual behavior, Christmas is perhaps the only time in the year when people can obey their natural impulses and express their true sentiments without feeling self-conscious and, perhaps, foolish. Christmas, in short, is about the only chance a man has to be himself.”

~ Francis C. Farley

7. “It is Christmas in the heart that puts Christmas in the air.”

~ W.T. Ellis

8. “Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful.”

~ Norman Vincent Peale

9. “Christmas now surrounds us,
Happiness is everywhere
Our hands are busy with many tasks
As carols fill the air.”

~ Shirley Sallay

10. “Each sight, each sound of Christmas
And fragrances sublime
Make hearts and faces happy
This glorious Christmastime.”

~ Carice Williams

11. “Blessed is the season which engages the whole world in a conspiracy of love!”

~ Hamilton Wright Mabie

12. “Christmas is not as much about opening our presents as opening our hearts.”

~ Janice Maeditere

13. “Love is what’s in the room with you at Christmas if you stop opening presents and listen.”

~ Author unknown, attributed to a 7-year-old named Bobby

14. “I wish we could put up some of the Christmas spirit in jars and open a jar of it every month.”

~ Harlan Miller

15. “Christmas is the season of joy, of holiday greetings exchanged, of gift-giving, and of families united.”

~ Norman Vincent Peale

16. “Christmas is most truly Christmas when we celebrate it by giving the light of love to those who need it most.”

~ Ruth Carter Stapleton

17. “Good news from heaven the angels bring,
Glad tidings to the earth they sing:
To us this day a child is given,
To crown us with the joy of heaven.”

~ Martin Luther

18. “The best of all gifts around any Christmas tree: the presence of a happy family all wrapped up in each other.”

~ Burton Hillis

19. “Probably the reason we all go so haywire at Christmas time with the endless unrestrained and often silly buying of gifts is that we don’t quite know how to put our love into words.”

~ Harlan Miller

20. “For centuries men have kept an appointment with Christmas. Christmas means fellowship, feasting, giving and receiving, a time of good cheer, home.”

~ W. J. Tucker

21. “Christmas is not just a time for festivity and merry making. It is more than that. It is a time for the contemplation of eternal things. The Christmas spirit is a spirit of giving and forgiving.”

~ J. C. Penney

22. “I heard the bells on Christmas Day
Their old, familiar carols play,
And wild and sweet
The words repeat
Of peace on earth, good-will to men!”

~ Henry Wadsworth Longfellow

23. “I love the Christmas-tide, and yet,
I notice this, each year I live;
I always like the gifts I get,
But how I love the gifts I give!”

~ Carolyn Wells

24. “Mankind is a great, an immense family. This is proved by what we feel in our hearts at Christmas.”

~ Pope John XXIII

25. “Let us have music for Christmas…
Sound the trumpet of joy and rebirth;
Let each of us try, with a song in our hearts,
To bring peace to men on earth.”

~ Mildred L. Jarrell

26. “Christmas is not a time or a season but a state of mind. To cherish peace and good will, to be plenteous in mercy, is to have the real spirit of Christmas.”

~ Calvin Coolidge

27. “I don’t think Christmas is necessarily about things. It’s about being good to one another, it’s about the Christian ethic, it’s about kindness.”

~ Carrie Fisher

28. “What is Christmas? It is tenderness for the past, courage for the present, hope for the future. It is a fervent wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace.”

~ Agnes M. Pharo

29. “May Christmas lend a special charm
To all you chance to do.
And may the season light your way
To hopes and dreams anew.”

~ Garnett Ann Schultz, “My Christmas Wish”

30. “I’m dreaming of a white Christmas,
Just like the ones I used to know,
Where the tree tops glisten
And children listen
To hear sleigh bells in the snow.”

~ Irving Berlin

31. “I will honor Christmas in my heart, and try to keep it all the year.”

~ Charles Dickens, Ebeneezer Scrooge, A Christmas Carol

32. “And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled ’till his puzzler was sore. Then the Grinch thought of something he hadn’t before. What if Christmas, he thought, doesn’t come from a store. What if Christmas, perhaps, means a little bit more.”

~ Dr Seuss

33. “The merry family gatherings–
The old, the very young;
The strangely lovely way they
Harmonize in carols sung.

For Christmas is tradition time–
Traditions that recall
The precious memories down the years,
The sameness of them all.”

~ Helen Lowrie Marshall

34. “Christmas is forever, not for just one day,
for loving, sharing, giving, are not to put away
like bells and lights and tinsel, in some box upon a shelf.
The good you do for others is good you do yourself.”

~ Norman Wesley Brooks, “Let Every Day Be Christmas”

35. “This time of year means being kind
to everyone we meet,
To share a smile with strangers
we may pass along the street.”

~ Betty Black

36. “Until one feels the spirit of Christmas, there is no Christmas. All else is outward display–so much tinsel and decorations. For it isn’t the holly, it isn’t the snow. It isn’t the tree not the firelight’s glow. It’s the warmth that comes to the hearts of men when the Christmas spirit returns again.”

~ Unknown

37. “There is a Christmas song upon the air,
There is a joy innate within the heart;
An inner sense of peace, a holy light
Illumines life and sets these days apart.”

~ Edna Greene Hines

38. “I am not alone at all, I thought. I was never alone at all. And that, of course, is the message of Christmas. We are never alone. Not when the night is darkest, the wind coldest, the world seemingly most indifferent. For this is still the time God chooses.”

~ Taylor Caldwell

39. “Christmas in Bethlehem. The ancient dream: a cold, clear night made brilliant by a glorious star, the smell of incense, shepherds and wise men falling to their knees in adoration of the sweet baby, the incarnation of perfect love.”

~ Lucinda Franks

40. “Are you willing to believe that love is the strongest thing in the world – stronger than hate, stronger than evil, stronger than death – and that the blessed life which began in Bethlehem nineteen hundred years ago is the image and brightness of the Eternal Love? Then you can keep Christmas.”

~ Henry Van Dyke

41. “Ask your children two questions this Christmas. First: What do you want to give to others for Christmas? Second: What do you want for Christmas? The first fosters generosity of heart and an outward focus. The second can breed selfishness if not tempered by the first.”

~ Author Unknown

42. “Bless us Lord, this Christmas, with quietness of mind; Teach us to be patient and always to be kind.”

~ Helen Steiner Rice

43. “Christmas! The very word brings joy to our hearts. No matter how we may dread the rush, the long Christmas lists for gifts and cards to be bought and given–when Christmas Day comes there is still the same warm feeling we had as children, the same warmth that enfolds our hearts and our homes.”

~ Joan Winmill Brown

44. “Christmas – that magic blanket that wraps itself about us, that something so intangible that it is like a fragrance. It may weave a spell of nostalgia. Christmas may be a day of feasting, or of prayer, but always it will be a day of remembrance – a day in which we think of everything we have ever loved.”

~ Augusta E. Rundel

45. “Christmas day is a day of joy and charity. May God make you very rich in both.”

~ Phillips Brooks

46.

Christmas quotes

47. “Christmas is doing a little something extra for someone.”

~ Charles Schulz

48. “Christmas, my child, is love in action.”

~ Dale Evans

49. “Off to one side sits a group of shepherds. They sit silently on the floor, perhaps perplexed, perhaps in awe, no doubt in amazement. Their night watch had been interrupted by an explosion of light from heaven and a symphony of angels. God goes to those who have time to hear him–and so on this cloudless night he went to simple shepherds.”

~ Max Lucado

50. “Want to keep Christ in Christmas? Feed the hungry, clothe the naked, forgive the guilty, welcome the unwanted, care for the ill, love your enemies, and do unto others as you would have done unto you.”

~ Steve Maraboli

 

There is always hope

The Gifts From Chronic Pain

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Living with Chronic Pain is no picnic. Intractable pain day after day wears down the body, the mind and the spirit and it can be extremely difficult finding anything good in the experience, but I have found a few things I wanted to share with you. Remember, these are my own personal thoughts.

  1. If you’re a spiritual person, it can deepen your faith. Now, in all honesty, Chronic Pain with no resolution can have the opposite effect and have you turning away from your Higher Power because you haven’t been healed, but I tend to think in the positives anyway. I believe that having Chronic Pain helps you to draw closer to your Higher Power as you find something…anything… to cling to when times are bad. God is an excellent listener and doesn’t mind if you yell at Him – He already knows you’re doing it, so what’s the point of pretending. Go ahead and be angry at Him. Yell, rant, rave, swear…do whatever makes you feel better. He can handle it. And then when you’re done, take a moment to thank Him for listening to you without judgement.
  2. You develop inner strength. Nobody develops inner strength like a person who lives with Chronic Pain. As the hours and days and years go by and nothing about your physical situation changes, there is resilience. It’s the necessary component that allows you to pick yourself back up after setbacks and keep going. To say to the world “I’m not done yet”. It’s the part of you that refuses to give up when others might say “it’s too hard”. Only you can determine your own resilience and whether or not you can keep going, but so far, you’ve had a pretty excellent track record to keep going. You are brave.
  3. Patience really is a virtue. In a world where everything needs to be had RIGHTNOW!! patience seems to be an old-fashioned quality. A person with Chronic Pain learns about patience very quickly – an oxymoron if ever there was one. You wait for appointments, you wait for doctors, you wait for your pain to subside, you wait for tests, you wait for results, you wait to feel better, you wait for answers, you wait, you wait, you wait. Depending on how complex your situation is, there may be several doctors involved in your care, so you wait for all of them to coordinate their schedules to see you and treat you. You wait endless hours for flare-ups to subside. For sleep to come. For pain to stop. For nausea to disappear. For bones to heal. And in all of this, you learn patience because you have no other choice.
  4. You finally have time to… When you’re feeling up to it, you finally have time to do those small things that you never had time for earlier: watch a favourite show on TV, read a favourite book, phone a friend for a chat, go for a massage, get your hair cut, organize the junk drawer, clean up the hobby room, work on a craft, write a letter to send via snail mail, look up a simple recipe to try that isn’t exhausting, order some flowers, send a love note to your spouse, go through your kid’s baby books or old photos, play a computer game, take an online course, go to an exercise class…the list is as endless as your imagination.
  5. You’re forced to slow down your pace. If you’re anything like me, most people with Chronic Pain or an Invisible Illness probably were Type A Personalities at some point in their lives – always on the go, go, go. If you were a doer who was always busy before, you’ve been given a gift to slow down and appreciate life around you. I became fully disabled in October 2009 but probably should have gone on disability about 2 years sooner. I had to really push through those last 2 years, to the point that I often lost the thread of a conversation right in the middle – I wouldn’t have a clue what we were talking about. I couldn’t manage more than one task at a time when I was famous for my multi-tasking abilities and I would jeopardize safety in firefighting drills by not remembering the steps to take to get out safely. By taking Disability and being forced to slow down, I was able to regain those skills again, in a more family oriented situation.

What gifts would you add to this list that you’ve received since experiencing Chronic Pain or Invisible Illness? Does this list ring true for you? Leave a comment below and share your thoughts.

There Is Always Hope

Seasonal Poetry

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A Holiday Treat

The scent of Christmas fills the air
Shoppers rushing everywhere
Santa’s bells ring on the street
Everything is a Holiday Treat
Snow is falling, fluffy white
Children playing, what a sight
Cookies baking, a spicy feat
Everything is a Holiday Treat
And when the day is done, we sit and smile
Cocktail parties really are our style!
We make new friends and catch up with the old
Then bundle up and head home in the cold
Kiss the kids and tuck them in
Pull the blankets to their chin
Think of how they look so sweet
Everything is a Holiday Treat
Slip the gifts under the tree
What a pretty sight to see
The entire house looks perfectly neat
Everything is a Holiday Treat
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

All That Matters

It’s the Little Things that matter
They’re the things that mean a lot
They’re the things that I can count on
When I’m giving things a thought

Oh there’s lots of big grand gestures
That are meant to mean big things
But in the end, they aren’t the ones
That tug at my heartstrings

I prefer the smaller hidden ones
The things that seem quite shy
The little acts that are given out
Not meant to catch your eye

It’s the little things that matter
That make a quiet sound
I love them best from all the rest
They make the world go round

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

T’was The Night Before New Year’s

T’was The Night Before New Year’s
And all through the house
Every creature was stirring
Including the Mouse

The Mouse was preparing
To stay up quite late
To see what the big deal was
And why it was GREAT

So he picked out a snack
Of some sharp cheddar cheese
From the trap in the kitchen
Meant to trap him, oh please!

Then into the Living Room
Round the Humans he passed
And the mangy old cat
He scurried quite fast

The Humans were laughing
And drinking their drinks
All Fuzzy and Bubbly
And their glasses made clinks

Their attention was focused
On the big screen TV
So the Mouse sat and watched it
And what did he see?

A huge crowd was gathered
Some place called “Times Square”
To watch a big ball
That was going to drop there

The Humans kept checking
Their clocks for the time
And soon were all chanting
First 10, and then 9

They went through the numbers
And ended at 1
Then yelled Happy New Years!!!
And then came the fun!

Everyone cheered
And they hugged and they kissed
Then they went back again
To the ones they had missed

The Mouse looked around
To the mangy old cat
Who layed there quite still
On it’s mangy old mat

Then without even thinking
The Mouse ran to the cat
(he couldn’t believe the
old thing was so fat!)

He said Happy New Year
And kissed the cat’s face
then said “here’s to a New Year
of hiding and chase”

The cat looked him over
And kissed him back too
“Thanks Mouse, Happy New Year
and the same back to you!”

Then the Mouse took his cheese
And went back to his house
Climbed into his bed
He was one tired Mouse

He’d had a great evening
He’d stayed up real late
And he learned why that night
Really was truly GREAT

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

There is always hope

Holiday Recipes

I’d like to share some favourite holiday recipes with you here. These are ones that my family adores the most and that are my true favourites.

Whipped Shortbread

WhippedShortbread

  • 1lb butter, softened (REAL butter, no substitutions on this!!)
  • 1cup cornstarch
  • cups flour
  • 1cup icing sugar 
  1. In a large bowl, cream the butter.
  2. Add dry ingredients.
  3. Whip for 10-12 minutes; batter will be shiny, and form peaks.
  4. Optional- Chill dough overnight (you can keep for a few days in the fridge). Before baking, take out and leave at room temperature for 1 hour, whip it up again in the mixer for about 5 minutes. This option allows you to roll and shape the cookies. Still melt in your mouth!
  5. Drop from a 1 tsp measure OR roll dough on to a cookie sheet based on the option you chose. (I level the tsp to make uniform, tiny cookies. A very small cookie scoop or tiny melon scoop is handy for uniform cookies. Due to how soft and delicate this cookie is making it bigger is not recommended).
  6. Bake at 325 degrees for 8-10 minutes, OR until bottom edges begin to brown. If they are smaller then watch the first batch to monitor the time required per batch.
  7. Watch them carefully they can burn quickly.
  8. When removed from the oven allow them to cool for about two minutes on the cookie sheet, carefully move them onto a cooling rack with a spatula.
  9. Allow them to cool on the rack for 15 minutes. If they are NOT cool they will crumble more easily and won’t set properly.
  10. ***Avoid letting them cool longer than necessary on the cookie sheet or they might stick and break apart when you try to move them.

Fudge Crinkles

fudge

  • 1(18 1/4 ounce) box devil’s food cake mix (Betty Crocker Super Moist suggested)
  • 1cup vegetable oil
  • large eggs
  • confectioners’ sugar or granulated sugar, for rolling
  1. Preheat oven to 350°.
  2. Stir (by hand) dry cake mix, oil and eggs in a large bowl until dough forms.
  3. Dust hands with confectioners’ sugar and shape dough into 1.5″ balls.
  4. Let sit for 2 minutes
  5. Roll balls in confectioners’ sugar and place 2 inches apart on ungreased cookie sheets.
  6. Bake for 8-10 minutes or until center is JUST SET.
  7. Remove from pans after a minute or so and cool on wire racks.

Coconut Macaroons

Coconut Macaroons Recipe 2

  • 14ounces sweetened flaked coconut
  • 14ounces sweetened condensed milk
  • 1teaspoon pure vanilla extract
  • 2extra large egg whites, at room temperature
  • 1teaspoon kosher salt
  1. Preheat the oven to 325 degrees F.
  2. Combine the coconut, condensed milk, and vanilla in a large bowl.
  3. Whip the egg whites and salt on high speed in the bowl of an electric mixer fitted with the whisk attachment until they make medium-firm peaks.
  4. Carefully fold the egg whites into the coconut mixture.
  5. Drop the batter onto sheet pans lined with parchment paper using either a 1 3/4-inch diameter ice cream scoop, or 2 teaspoons.
  6. Bake for 25 to 30 minutes, until golden brown.
  7. Cool on wire racks.

White Chocolate Chip Cranberry Oatmeal Cookies

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  • 3cup sugar
  • 1cup packed brown sugar
  • 1cup butter, softened
  • large egg
  • 1teaspoon vanilla extract
  • 1teaspoon cinnamon
  • 1teaspoon baking soda
  • 1teaspoon salt
  • cup all-purpose flour
  • 1cups quick-cooking oats (not instant)
  • 3cup dried cranberries
  • ounces white chocolate chips
  1. Preheat oven to 375°F.
  2. In a large bowl using an electric mixer combine the sugar, brown sugar and butter; mix well to cream together.
  3. Add in egg and vanilla extract and mix until combined.
  4. Add the cinnamon, baking soda, salt and flour and mix well.
  5. Fold in the oatmeal, dried cranberries and white chocolate chips- making sure that all ingredients are uniformly distributed.
  6. Roll dough into 1-inch balls and place 3 inches apart onto a greased cookie sheet and bake at 375° for 10-12 minutes, just until the edges are lightly golden.
  7. Remove from oven and let cool for 2-3 minutes on the cookie sheet, then transfer cookies to cooling rack.

 

Remember…There is always hope

Chronic Illness and the Holidays

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As we move into December and the start of the Festive season, it can be a time of great stress for those of us who live with Chronic Illness. I wanted to share some strategies for getting through this time of year without increasing your pain or stress levels.

Here are some of my top suggestions:

Plan In Advance

As Christmas, Hannukah and New Years get closer, it’s a good idea to start thinking about what you’ll do and where you’ll go. Are there family traditions that can be changed in regards to who hosts events? If it’s been you in the past that hosted a large group, perhaps someone else could do it this year and you could be the guest. Start to prioritize the things you most want to do (attend a Santa Claus parade, a Festival of Lights, Religious Services, visiting certain friends, etc.) and then build your schedule around that.

Keep Managing Your Chronic Illness

Once you have a schedule in place, you can start building in rest days before and after events. Don’t forget about the day of the events themselves and how you need to ration your energy to have the greatest chance of being able to participate.

Go to your scheduled doctor’s appointments and take care of yourself. It’s so tempting to cancel these things at this time of the year, but don’t. Make sure you are taking your medications as prescribed. If you have special dietary needs, keep them in mind when eating out and preparing meals. Now is not the time to go off a medically necessary diet.

Make Lists

Make lists of things you need or want to do. Prioritize those lists. Delegate and let some things go. Take advantage of online shopping to save your energy.  And don’t be a perfectionist. There’s no room for perfectionism in a chronically ill person’s life.

Pace Yourself

If you know you have a party to go to in the evening, that morning is not the time to scrub out your tub. This is another area in which I struggle. Pace yourself throughout the day and over a period of several days. If you are planning on going shopping with friends on Saturday, plan on Friday and even Thursday being light activity days.

Be Honest

If you’re going somewhere else to celebrate and you have energy limitations, let your host know that you may not be able to participate fully in the activities. If you aren’t able to host at your house like usual, ask others to chip in and host instead. Being honest with people in your life about your limitations can be helpful for avoiding hurt feelings later. Think through what you need to explain to others ahead of time to allow the events to go smoothly.

Enlist The Help Of Your Spouse Or A Friend

Enlist the help of your spouse or a good friend to be part of your team during the holiday festivities. This should be someone who knows you well and will be able to read your responses to situations. This person will help you feel safe in the situations you’re entering and will watch for any indication that you aren’t feeling well.

My husband Ray, serves in this role for me. Another friend or family member could also do this. Basically, Ray notices when I’m getting worn down and my health is going downhill. He’s particularly aware of my flagging energy, and will often ask me how I’m doing to gauge whether it’s time to leave. I also know I can tell him I’m ready to go and he’ll take me home immediately if I need to leave.

Be Okay With Your Plans Changing

This one is a big part of normal life with chronic illness. Flexibility is important because things can change on a moments notice when health issues are a concern.  Even if you have everything planned and scheduled, do yourself a favor and release expectations. If you are religious, prayerfully plan your schedule but then hold those plans loosely. Ask God to cover you with perfect peace in whatever situations you may encounter with your health over the holidays.

Ask For Help

Ask for specific things. I don’t like to depend on anyone for help, but if it means making the holidays more manageable, I think it’s worth it. Sometimes, people will offer to help, but they don’t say what they are willing to do. Having a list ready with ideas of what others can do for you will come in handy when people make those kinds of offers. Do you need help with laundry? Running errands? Housework? How about help with wrapping gifts? Think about all of your regular and holiday tasks and delegate some of them to family members and willing friends.

Connect With Others

Try to make time with friends you might not otherwise get to see, even if it’s just for a short while. Have a quick get together at a coffee shop, chat with a girlfriend about a sappy Christmas movie you’ve both watched. Make an effort each day to reach out to someone. Text, Facebook, instant message, make a phone call. You don’t have to carry on an hour-long conversation, just a brief connection can be enough.

Find “Me” Time

Build in some time just for yourself during the holidays to read, craft, rest or do whatever else will help to give you some “me” time. It’s important to recharge your batteries. If being surrounded by people is what energizes you, then do that…it’s all about what makes you feel good.

Make Time For Your Spouse Or Significant Other

It’s so important to carve out time for the two of you. With all the busyness going on around you,  communicating can sometimes take a backseat, especially if you aren’t feeling so well. Be honest about how you are feeling and ask for help when you need it. Try to sneak in a few inexpensive “dates.” Drive around and look at the Christmas lights, stop for some hot chocolate, attend a Christmas program together. Just enjoy each others company.

Laugh As Much As You Can

This one is one of my favourite pieces of advice. Laugh. Just do it. I’ve found that no matter how horrible I feel, laughter can be a source of medicine for me. Laughing helps lift my spirit and makes me feel more alive. Try to enjoy yourself while you celebrate the holidays, and be sure to include laughter in your days!

Remember The Reason For The Season

It’s so easy to get caught up in the baking, partying, shopping, decorating, etc., but that’s not really what it’s all about. If you are a religious person, keep attending church services and go to the special holiday programs. Listen to religious Christmas songs along with the pop tunes. If you aren’t particularly religious or are a nonbeliever, meditate, attend holiday community events, and enjoy finding ways to nurture your own spiritual side.

Remember….There Is Always Hope

Turning Shame to Victory

I should on myself today.

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As a person living with Chronic Pain from Fibromyalgia and a host of other conditions, I tend to live with a lot of shame. I blame myself for not being able to keep up with the chores around the house that I should be able to do. I blame myself for not being able to work as an Administrative Specialist, a job I adored. I had a pity party about a lot of things as I stared at the dust on the TV stand. That’s right…I should upon myself today. I do it often. Too often.

Most people with Chronic Pain do the same thing. When we lose the ability to stay on top of the chores we used to do easily before, we start to feel guilty and ashamed. Dishes pile up, laundry goes unwashed, showering and personal grooming falls by the wayside and moving from bed to couch often becomes our biggest accomplishment. It’s not that we want to feel this way, but pain and the side effects of medication often make us this way. Most of the medications we are given include fatigue as one of the side effects. Others include weight gain, which can slow us down tremendously, nausea, constipation and/or diarrhea, dizziness, and other unpleasant things.

And that brings up another issue. All of these side effects do little to help us feel pretty. In addition to feeling pain and fatigue, we’re often left carrying extra weight so now we feel even less attractive than before. It’s a “damned if you do, damned if you don’t” situation.

So how do we get over “shoulding” on ourselves. We feel like we should be able to keep up with the chores around the house, while we’re still taking care of making dinner and watching the kids and staying on top of their activities and doing everything else expected of us, plus making sure our spouse’s needs are met.

What happens when you live with a spouse who expects you to manage everything exactly like you did before you became sick? A spouse who doesn’t believe that you’re really ill and who thinks it’s all in your head? What if you live without a spouse – if you’re a single parent with no support? Who takes care of you?

In order to find victory in the midst of this shame, try answering some of these questions*, being as honest as you can.

  • What three words/phrases best describe you in a POSITIVE way? Don’t settle for neutral or slightly positive words to describe yourself. Be bold.
  • What do you do best? Everyone has unique talents and abilities — find yours by taking an accurate inventory of your life.
  • What is your biggest accomplishment in the last year? If fibro and depression have been a longstanding part of your life, you likely feel that the last year has been void of any accomplishments. Look deeper — achievements come in all shapes and sizes. Depression works to minimize your triumphs, but shedding light on them magnifies their impact.
  • What are three successes in your life? When you look at your lifetime successes, you begin to see how effective and valuable you can be. You understand your value and build your self-esteem.
  • What are you working on? Having goals and direction in life limits depression. Completing those goals adds another accomplishment to your list and boosts esteem.

Fibromyalgia may change many things in our lives, so it’s important that we remember to find the positives and celebrate them. No more shoulding on ourselves!

So, I’ve decided to give up the guilt about what I’m NOT able to do around the house. I’ve even found new hobbies and activities that I’m passionate about and that I’m actually good at! I’ve become a volunteer for an organization in BC, my home province in Canada, that uses Patient Partners to work with Health Care organizations to help make real change in how health care is delivered. The Patient Voices Network has given me opportunties to speak in front of large crowds, attend educational events and become part of several committees. I’m careful to choose to become engaged according to how I’m feeling and I don’t take on engagements that require weekly participation. Most of what I do involves 3-4 hours of my time per month which is manageable. Twice I’ve had to regretfully pull out of engagements that became too involved for me to manage. Even at the last conference I attended which lasted for 3 days, I was able to build rest time into the daily schedules. I wouldn’t have been able to manage otherwise.

That being said, I don’t want anyone to think that I’m underestimating how awfully painful it is to be forced to change yourself or how hard it is to find new passions to give you a sense of purpose. These are not simple to apply or instant fixes. Please don’t think I’m minimizing the pain of the loss. I want you to know that I think you’re incredible because of the fact that you’ve survived those things and have continued moving forward, no matter how slow. That is victory!

Even when you’re sick and you haven’t found new activities or even if you can’t get out of bed, what I just said about you being incredible is still true. You’ve survived so much and you’re still here fighting! I mention finding new things to do as a way to better self-esteem because I know it’s something helpful when possible, but there are so many things I feel are more important and that have been more fulfilling for me.

Being sick has forced me to learn a lot of lessons that other people might not ever learn – lessons about patience, how to deal with pain and difficulties with grace, good humour and empathy. I’ve learned that the little things are often the big things in life.

All That Matters

It’s the Little Things That Matter
They’re the things that mean a lot
They’re the things that I can count on
When I’m giving things a thought

Oh there’s lots of big grand gestures
That are meant to mean big things
But in the end, they aren’t the ones
That tug at my heartstrings

I prefer the smaller hidden ones
The things that seem quite shy
The little acts that are given out
Not meant to catch your eye

It’s the little things that matter
That make a quiet sound
I love them best from all the rest
They make the world go round

Also, I think I understand more about pain and can truly empathize with others who are hurting. I feel like I can truly help people because of the pain I’ve experienced. I don’t know about you, but I think that’s pretty darn cool. And I feel like it takes immense strength to not only survive chronic illness, but to continue appreciating life and showing love to others when in constant pain. It’s also taken strength to rebuild myself and my self-esteem. I have to give myself credit for that. And finally, as much as I wish I was healthy, I fight for my life every day and I’ve won every single time. If that’s not victory then I don’t know what is! And the last thing I know is that if I’m capable of all this…you are too.

There is always hope

 

 

 

* https://fibromyalgia.newlifeoutlook.com/self-esteem-fibromyalgia/

Interview October – Frank

Today on our very last Interview October, we’re meeting Frank Rivera. Here is his story:

Frank’s Bio…  

Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis. Frank strives to raise awareness for Sarcoidosis nationally, but specifically in the government sector. He has represented the Rare and Sarcoidosis community as a speaker at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Research, was a Global Genes RARE Foundation Alliance Member and was an Advocate, an ambassador for The EveryLife Foundation and a Working Group Member. Named RUGD Ambassador for Illumina October 2017 Frank organized RareNY in 2016, to raise awareness for Rare Diseases in the state of New York. He organized “A Day for Rare Diseases” on October 15th, 2016 in Long Island NY, in partnership with Global Genes, to raise awareness for all 7000+ rare diseases. In recognition of Frank’s efforts, Suffolk County and the town of Brookhaven officially declared October 15th “A Day for Rare Diseases”. In 2017 Frank was named Brookhaven advocate of the year. Frank also is an advocate for “Right to Try” even being interviewed by NBC Nightly News this year.

Chronic illness(es)/disabilities I have… 

Sarcoidosis, Sjogren’s Syndrome, and Parkinson’s and IBS

My symptoms/condition began… 

I was misdiagnosed in 2004, with Lung Cancer. I went through 4 years of chemotherapy and radiation while living in Florida. After the 4 years, I was told I was in remission. In 2011 after moving back to New York, I had problems with my IBS. While in the ER room they took a CT scan of my stomach and part of my lungs were shown in the CT Scan. They found more masses in my lungs. They took a biopsy and said I had Sarcoidosis. I ended going to Mt. Sinai Hospital to their Sarcoidosis clinic in Manhattan. They got my past tests from the hospital in Florida and found out that I had Sarcoidosis the whole time.

The hardest part of living with my illness/disabilities is… 

The pain and that they all are invisible illnesses. People look at me and they say well you look fine. But they don’t know what my insides feel and look like. Sarcoidosis has taken over 90% of my body. The only place I don’t have it is in my liver and kidneys.

A typical day for me involves… 

Everyday I never know how I am going to feel. So there is no real routine. I am on permanent disability. The only thing I do every day I wake up unless I can’t get out of bed is make sure both my wife and daughter have what they need for work and school respectively. I make them their lunch as well as breakfast. After that, I am too tired so I take a nap. Then since I run a non-profit organization I check my emails to see if anyone needs help. If not most of the days I rest. This disease has taken the energy out of me. In April I was downgraded from chronically ill to terminally ill. I used to travel to raise awareness for Sarcoidosis and Rare Diseases. I no longer travel far due to my body not being able to handle the travel and the long days in meetings

The one thing I cannot live without is… 

It may sound funny, but the one thing I need every day is my one cup of coffee every morning.

Being ill/disabled has taught me… 

To value life. It has told me to not sweat the small stuff. I have learned that living each day as the best you can. I also have learned you can’t please everyone so you need to please yourself first or you won’t be able to please others.

What advice would I give someone recently diagnosed… 

Be your own best advocate! Be involved. Learn about the disease

My support system is…

I would not be anywhere without my wife Diana and my daughter Savannah who is 15 going on 30. They have been there for me physically, emotionally and most important mentally. 3 years ago I thought about committing suicide due to the pain. I would have done it if it wasn’t for my wife and daughter. I ended up putting myself in a 72-hour hospital watch for suicide prevention.

If I had one day symptom/disability-free I would… 

I would go away with my family to the beach. That is my favourite place but now since I have Sarcoidosis I haven’t been able to go that much at all.

One positive of having a chronic illness/disability is…

There are actually two positive things that have come from having these diseases. The first is the friends I have met that have the same diseases as I do. They understand what I am going through and I can talk to them about it. The most important positive for me is I knew I was strong, but I never knew how strong I was until I have been with this disease. I have fought through things I never would have thought I could. My motto is ” I have Sarcoidosis and Parkinson’s but THEY don’t have me!”

My links are:

www.sarcoidosisofli.org

https://wordpress.com/view/lifeasararepatient.blog

 

Interview October – Maya

Today on Interview October, we’re meeting Maya Northen Augelli . Let’s get to know her better:

MayaNorthenAugelli

Introduce yourself and tell us a bit about you…  

My name is Maya and I’m from Philadelphia, where I live with my husband and our dog. I run a travel planning company, and also work with a local consulting company. I became a mental health and chronic illness advocate in 2009, after being diagnosed with a relatively rare mood cycling disorder. When I’m not working or advocating, you can often find me traveling, hiking or otherwise enjoying nature, reading, writing, or doing yoga – in fact, I’m just starting Yoga Teacher Training this fall!

Chronic illness(es)/disabilities I have… 

I have Rapid Cycling Cyclothymia, a rare mood cycling disorder that’s similar to, but technically “less mild” (in quotes because it definitely doesn’t feel mild at times) to Bipolar Disorder. I also struggle with anxiety as part of this disorder, though not technically diagnosed with a separate anxiety disorder. In addition to my mental health condition, I  battle IBS and Migraines

My symptoms/condition began… 

I am told I was most likely born with cyclothymia. I started exhibiting symptoms of hypomania as early as two years old, though of course they didn’t know what it was at the time. Symptoms progressively increased in frequency and intensity through my teen and early adult years. I was finally diagnosed just shy of my 30th birthday. The migraines I have been getting since I was a teenager – tough to really say when they started, but I can definitively say I can’t really recall a time when I wasn’t prone to migraines. They’re not continual, but I have consistently gotten them at least a few times a month since I was a teen. The IBS symptoms began around the age of 23, and I was diagnosed shortly thereafter.

My diagnosis process was… 

I’ll speak mainly about my cyclothymia diagnosis process here, as they others were pretty straight forward – went to the Dr, was referred to a specialist, had a couple of tests (colonoscopy/upper & lower GI tests for the IBS) and was diagnosed.

The cyclothymia diagnosis was trickier. I’d been seeing therapists on and off since college. I had only found one I’d really trusted, but long story short, at the time my symptoms weren’t as prominent, and I was more seeing her post-divorce than for my specific mental health symptoms. In the summer of 2009, my GP put me on a low dose of antidepressants, which at first helped, but soon made me feel worse. In August 2009, I was hospitalized for two days with what I thought were non-stop anxiety attacks. The hospital increased my depression medication, and I felt worse. When I got out of the hospital, I went to the one therapist I’d trusted from past years, and we began working through things – including the fact that the medication was making me worse. I even brought my mom to a session, in which she described the symptoms I’d exhibited as a very young child (since I couldn’t quite as accurately describe them, having been a toddler when they started). It was during these visits that I was finally diagnosed with rapid cycling cyclothymia. My therapist explained that the antidepressants made me worse because I cycle so rapidly that basically, by the time the medication that’s supposed to “lift” my mood (for lack of a better phrase) hits my system, I’ve already cycled up, and the effect is compounded. So in essence, the antidepressants were putting me in almost continual hypomania (what I had thought were anxiety attacks). She subsequently brought me down off the antidepressants and we began mood stabilizers.

The hardest part of living with my illness/disabilities is… 

It’s two fold for me. One is the feeling of lack of control over my brain. I feel like I often can’t trust my own mind – because I cycle so quickly, literally every day is a complete surprise. I never know how I’ll wake up feeling (depressed, hypomanic, anxious, none of the above), and how often it’ll change each day. Not being able to trust my own brain, or feeling like I can’t, massively affects my self-esteem and often makes me feel hopeless and worthless.

The second is the stigma. The fact that people think you can just smile, change your attitude, be more grateful, look on the bright side, or choose to not feel this way is awful. When this happens, not only do I feel hopeless and worthless, I’m being told it’s my own fault, and shamed for how I’m feeling.

A typical day for me involves… 

I have a full time job, so on weekdays, my day of course involves that. But in terms of illness and coping strategies, I get up early to exercise most weekdays before work – it helps my mood, and it helps me to keep a consistent schedule. I spend time writing each morning – mostly journaling. This helps me brain dump, more or less, so that I can try to sort through the mish-mosh of feelings, emotions, thoughts all going through my brain. Without this outlet, it feels like non-stop stimulation inside of my brain, before even getting much input from the “outside” world, and it makes concentration and focus extremely difficult. Most evenings after dinner, I try to meditate, and/or do some yoga. It’s a wind down for my day, and helps settle my brain, so that I can hopefully get some sleep. If it’s not a work day, I try to spend as much time in the sunshine and fresh air as I can – especially in nature. I’ve been slacking in that lately, and really need to get back into it.

The one thing I cannot live without is… 

My loved ones. They’re my rocks. But if I had to choose an actual thing… I’d be tempted to say my medication, but I’ve had to go temporarily off of it for personal reasons, so technically, I’m living without it for the moment.  So, I’d probably have to say my journal. Writing is my solace. My journal will “listen” to my thoughts and emotions and feelings with no judgement, and it lets me get it “out of my head” without having to actually direct it at anyone, which is huge in helping my relationships with loved ones and friends (note: I’m far from perfect in this regard, but it helps). I work through so much in the pages of my journal, and I can’t imagine not having that outlet on a daily basis.

Being ill/disabled has taught me… 

That I am not alone, and that so many people struggle with their mental health. You hear the statistics, that one in five Americans have a mental health condition, but when you begin talking about your illness and advocating, and you have people you would never have thought coming to you and saying, “Thank you so much for speaking out, I struggle too,” it really hits home. That “one in five” goes from being a statistic to something tangible that you can feel in daily life.  My illness has also given me a purpose. In my adult life, I feel I’ve floundered a bit in really finding where I feel I belong. But utilizing my illness to help others has, from the very start, always felt 100 percent like it’s my purpose and a path that I have to follow. It feels such a natural part of my life, almost an extension of myself, when so little else does sometimes.

What advice would I give someone recently diagnosed… 

I have so much to say here, but I’ll try to condense it!  First, I would tell them to learn everything they can about their illness (from credible sources of course), and that when they’re ready, finding support with others who have the same/similar illness  – whether they find this in an official group or among friends or on social media/online – can make a world of difference. I’d also remind them how often depression and anxiety lie, and that there may be days that their illness wants them to believe every terrible thing about themselves, but that these aren’t true, no matter how convincing the lies sound.  I’d want them to know that there’s hope, there are others who “get it” and are here to help, and that they are not alone. Finally, I’d tell them to make sure that they have a healthcare team that they trust, and just as importantly, that trusts them. We know our bodies and our brains better than anyone else because we have lived with them our entire lives, and it’s important that our health professionals understand this – we deserve that respect as patients, to have our voices heard and not to be discounted.

My support system is…

My husband, my family, my friends, my therapist, my social media/online spoonie family.

If I had one day symptom/disability-free I would… 

Live as fully as I could – do activities I love to do, with people I care about, and try my hardest not to, as so often happens, let the anxiety of “Ok, I feel good now, but when is the proverbial other shoe going to drop”  creep in. Afterall, if I let it creep in, I’d cease to be symptom free!

One positive of having a chronic illness/disability is…

For myself, I’d say that it’s helped me to be more understanding and empathetic. Because I know I’m often struggling with a lot that others can’t see, I try to also remember this when the situation is reversed, and I try to put myself in their shoes before passing judgement. For instance, if someone’s speaking to me badly, I try to ask myself “what might they be going through that I can’t see that’s causing them to act this way?”.

In addition, as mentioned above, it’s given me a purpose and direction. Without my illnesses, I wouldn’t be an advocate, I wouldn’t be involved in so many various organizations and causes, and I wouldn’t have met so many amazing people through these.

My links are:

https://spreadhopeproject.com
www.liliesandelephants.blogspot.com
Twitter: @mayanorthen
Instagram: @myohmy23