Bully, Bully
It seems adolescent bullying is under a microscope, but I haven’t heard anyone speaking about adult bullying… Continue Reading…
Wobbling Along
Undergoing new chemical treatments for intractable pain isn’t an easy process. As my neurologist says, “You can’t make omelets without breaking some eggs.”
Though I am receiving relief from the constant body-wide pain of Fibromyalgia, I am unable to move very well. I feel as though my body is a bag of wet cement. It shifts slowly as I try to move, but weighs me down and negates the ability to move quickly or accurately. It is dangerous when walking past the top of the steep staircase when you have a wobble in your step.
I haven’t felt confident enough to drive while on these meds, and when I do get out I am quickly exhausted and grateful to get back home. Being home hasn’t hindered my skin care project until now.
At the point where I have product to sell my body needs down time, and I am lost just before Christmas with no way to sell my products or even to catalog my products in a price list and information list form with photographs.
My hope is that those who have shown interest in my skin care project will still be interested in learning about better skin care after the holidays.
This batch of first recipes will be significantly cut down to a hand full of products, and my glass jars will change when The Kitchen Witch Creations skin care line hits shelves in January.
Top Five Best Spoonie Gifts For The Holidays
Spoonies, or chronically ill people, are all about comfort. Helping a loved one in pain to stay comfortable and stress free is a great way to show your support and concern. These are my top Five suggestions for this holiday season. The prices range from $20 to close to $200. Most items can be found online at Amazon.com.
Chronically ill people can have difficulty keeping their neck warm to avoid tight muscles, tension and migraine headaches. A soft squishy scarf that does not irritate the skin and can be wrapped around the neck twice is a blessing, especially when you wear a scarf to bed to avoid stiff neck muscles. Personally, I’ve learned to wear a scarf all the time. A colorful chic scarf can add a glow to otherwise pale and wan cheeks.
2) Coconut Water.
A case of Coconut Water – I prefer with Pineapple – is a perfect gift for spoonies who need to stay hydrated and need to keep foodstuffs close at hand when bedridden and perhaps alone for many hours. A bit pricey for an individual Tetra box, but by the case – don’t make the spoonie carry it! – it is an affordable and valuable gift. A better choice for natural hydration. Great for IBS sufferers.
3) Kindle.
Books are heavy and cumbersome for people with chronic health issues. A Kindle is a great way for a spoonie to keep up with the world without having to leave the house to get a book or magazine. When you are awake at three am and are looking for a particular style of writing to help you through the pain, the lack of sleep, the loneliness of a sleeping house when you are trying to keep The Birds calm…curling up with the perfect good read is possible with a Kindle. Update: What a difference a year makes. Now the Kindle Fire is available. Regrets…I’ve had a few…
4) Gift cards for Amazon.com, iTunes, etc.
These are a great way to provide hours of distraction from the pain and isolation of chronic illness. The gift of choice is a help to a chronically ill person. To choose movies, books, music or perhaps a therapeutic device or comfort item is a wonderful way to show you care.
5) Soup
Soup is the universal gastric hug. Check with your spoonie for ingredients that should be avoided, but making a batch of soup and freezing it in individual portions in disposable containers will have your spoonie hearing the voices of angels. Not a cook? A box of ready to make vegan soup will be appreciated by any spoonie who needs quick and easy meals.
Don’t forget the caregiver(s): Recognition for a difficult lifestyle can give a boost to a frayed husband/wife/lifepartner/buddy/parents. They didn’t sign on for this. A night out with friends or family for a few hours can invigorate the soul of a caregiver. Laugh. Play games. Take their mind off of the weight of caring for a chronically ill loved one.
The Birds for Spoonies
Trying to explain to a close friend what it is like to be chronically ill, predominantly with Fibromyalgia and related conditions, brought me to a road block. How do you explain to people who get out of bed in the morning with a full day planned that I can’t even plan when I’ll be able to get my feet on the floor and get up out of bed each day.
I haven’t had the words, and as I try to wrap my brain around the question, another question comes at me. Then the questions are repeated with more intensity closer to my face and all I can do is stammer and cover my face; protect my brain; try to stop the overwhelming feeling flashing through my brain cells. The longer it takes to respond the more it looks like any response is dubious, at best. I’ve had to turn away from these situations before it flairs through my spine resulting in cramping of muscles, pulling on my skull, burning pain through my brain that fights relief. As long as I can keep meds and a bit of food down, I’m okay. Being an hour from home..not okay.
This most recent encounter with my friend took place in 32 degree F weather with a brisk wind off the Maine water. Between the questions and the weather I was stopped cold in my tracks, so to speak, and I refused to walk further. I’m not used to standing up for myself. I tend to be a people pleaser, at my detriment, but this lesson has been hard learned – listen to my body and respond to it’s needs.
I’ve been accused of running away from people. I haven’t been running away from you. I am running towards relief. Running towards a chance of catching the pain before it settles in and takes over. I am running towards relief. I am in plain site – in my bed – awaiting visitors. Where have you been?
This episode brought about my chance to learn about Spoons as they relate to chronic illness. The Spoon Theory was a great way to visualize my day and I left the theory out for others to read. Asked them to read it. I put out a jar with the used Spoons for the day with the remainder beside the jar. Near the door. You’ll know as soon as you walk in how I’m doing for spoons today.
As great as The Spoon Theory was for me and thinking about my activities in a different way, it didn’t cover the mental toll that pain and other symptoms takes from us. When confronted on the windy street all I could do was wave my arms around in front of my face, trying to clear my brain, trying to communicate when systems were failing, trying to keep the birds from pecking my eyes out.
That was it. My metaphor. My visual tool for my chronic illness control.
Alfred Hitchcock’s movie The Birds with Tippy Hedren.
I googled for a picture of the birds in the face scene, and I also found a beautiful photo of Tippy Hedren in a classic little black dress with a Raven sitting quietly on her arm.
She looks so elegant in this shot. So in control of the moment. Unafraid. Poised. Calm.
She may be gorgeous in this photo, but you can’t forget she has this huge bird on her arm.
That’s how Fibromyalgia feels. I clean up well and I know how to wear 3 inch heels and put on Mascara, but no matter how good I look ( but you don’t look sick?!) Fibromyalgia and other chronic demands are holding onto my arm with claws. Always.
Now add other stressors. Other symptoms. Take your pick. About anything will do it. Before long you are fighting off the crazed birds. They want you taken down and all you can do is hope to reach the safety of your meds, your TENS unit, and anything else you count on to get through a spell.
I’ve printed out 8 x 10′s of each picture and I’ve hung them beside the bed. Anything that helps you is worth putting near the bed.
Now I have a way to convey my struggle. How many birds are after you today?
Fibromyalgia
I’ve always been considered ‘sickly’. Now in my mid forties I find the issues of my youth are slamming up against the issues of aging. Feeling a bit battered between the two I haven’t been contributing much beyond photographs to my blog since August.
Brain fog seems to reign these days and my body limps along without ease. I should have bounced back from my bout with Bronchitis in January but most days are still sedentary with knitting in my lap.
Finally, a Fibromyalgia diagnosis fits all the pieces of forty-plus years of pain and illness into one picture that I now see complete . I could only see the edges of a pile of intricate pieces before reading about Fibromyalgia.
Physical therapy, specifically Aquatic Therapy is my saving grace. Twice a week, when I am able, I work out in 92 degree F water. Being released from gravity for an hour in warm water is so beneficial for emotional as well as physical well being.
Well being is the bottom line.
Must Be The Reasons Of A Witch
I’ve been absent in so many ways for far too long this winter.
A confirmed Fibromyalgia diagnosis has me questioning so many aspects of my life.
Aside from the syndrome that has been with me my whole life I now am crashing into the aging process.
I believe this list would benefit any person:
Positive Thoughts
Stress Reduction
Exercise
Nutrition
Sleep
Water
This list is not meant to be considered in order of importance as all aspects are related and are equally crucial to well being.
Wouldn’t you think that taking care of ourselves would be the easiest part of living? Why is it so difficult for us to acknowledge the importance of sustaining and nurturing ourselves?
Why is it easier to down a soda instead of a glass of water?
Why do we accept treating ourselves badly in so many ways?
I don’t have answers, just a day by day thought-filled awareness of walking the proper path one step after another. It is a lifestyle change that encompasses every choice.
Aquatic Physical Therapy
I’ve been attending aquatic physical therapy at the local hospital rehab unit.
It is wonderful to be in 92 degree F water while exercising. Gravity becomes apparent as soon as I start up the stairs out of the pool, and I want to turn around and drop back into the warm and comforting water. What a difference this has made on my ability to exercise without pain and exacerbation of Fibromyalgia and Arthritis while strengthening my back.
Endometriosis
I had a complete hysterectomy when I was 28 years old. I began having pelvic pain and related issues by the time I was 14 years old, and after many years of medications, surgeries, herbalists, meditation…anything…including six months on a Prostate Cancer treatment…before reaching the conclusion that a hysterectomy was the only remaining answer for me.
I do not have children. I chose not to have children. Having a condition with no cure and minimal relief, plus the enormous fact that Endometriosis is hereditary…I was not willing to pass this chronic, quality of life altering condition on to another woman.
I know the ache in your uterus to have a child, a baby in your belly, a living connection to a lover, but I also am intelligent enough to know the facts. Facts about how deleterious Endo can be to a relationship, a career, responsibilities, joy. I know the pain of Endo that can make you question your ability to remain sane through a bad day.
