chronic fatigue syndrome Archives

March 27, 2020March 29, 2020

Hyperhidrosis and The Realities of Living with Excessive Sweating

Living with hyperhidrosis can be challenging. The contents of this article may seem like too much personal information about bodily functions for some people, however, I feel that hyperhidrosis is something that is not talked about a lot in the chronic illness community. We need to delve into the TMI (too much information) realm to discuss it.

I used to think that I was a gross freak of nature for sweating so much, but after connecting with other people who experience a similar thing I realized that it is more common than I thought.

What is hyperhidrosis?

Hyperhidrosis is abnormally excessive sweating that is not always related to heat or exercise. Someone with hyperhidrosis may sweat so much that it soaks their clothes and drips down their face and hands. People normally sweat when they exercise, are hot, are anxious or under stress. The sweat that accompanies hyperhidrosis far exceeds this normal level of sweating. Hyperhidrosis can also be made worse by factors such as heat, exercise, sweat, stress or anxiety.

Primary Focal (Essential) Hyperhidrosis

The most common form of hyperhidrosis is primary focal (essential) hyperhidrosis. This occurs when the nerves responsible for signalling your sweat glands malfunction and become overactive. This type of hyperhidrosis usually affects the palms of your hands, the soles of your feet, and in some cases your face. There is no determined cause for this type of hyperhidrosis, however, it may be hereditary as it runs in families.

Secondary Hyperhidrosis

Secondary hyperhidrosis occurs when it is a symptom of another medical issue. It is more likely to cause widespread excessive sweating than primary hyperhidrosis. Conditions that may result in excessive sweating can include:

Thyroid issues
Diabetes
Infections
Some types of cancer
Heart issues
Nervous system disorders

Some medications can also cause excessive sweating.

Experiencing Fibromyalgia with Hyperhidrosis

My secondary hyperhidrosis is caused by my severe fibromyalgia, which is a central nervous system disorder. While some of the medications can cause secondary hyperhidrosis, my experiences with excessive sweating began in childhood, long before I started taking these specific medications, but after I started suffering from chronic pain.

Of course, weight can impact how much you sweat, and I am overweight. However, as said above, I have been experiencing this excessive sweating since before I was even a teenager, and I weighed nothing close then to what I weigh now.

How Hyperhidrosis Impacts Social Situations

Work: If your job is in any way stressful and you deal with hyperhidrosis, you may find you sweat a lot at work. If you work around others, such as in a customer relations role or in the office, the excess sweating may make you anxious about how others may perceive you. This anxiety may impact your productivity if it becomes severe. Hyperhidrosis may also impact your opportunity of gaining new employment if it becomes problematic during job interviews. Since sweating is usually a sign of anxiety, even the calmest person with hyperhidrosis may look extremely anxious to the interviewer. This could have a severe impact as to whether you are chosen for the job. Shaking hands can also be a source of anxiety particularly if you have primary focal hyperhidrosis which causes sweaty palms.

Night clubs: As a young adult, every once in awhile I like to go to a night club and dance with my friends. Even though I find this extremely draining, I like to experience just a few hours of normality. Many nightclubs are crowded and warm. Hello Extreme Flare! It can be difficult to enjoy myself knowing that I have sweat visibly dripping down my face. This can also impact my chances of meeting new people and starting new relationships. , The excessive sweating may cause people to judge me before they get to know me. This is definitely a disadvantage for the single girl like me.

Any social occasion: Hyperhidrosis can impact any situation. Going to a café, a theme park, the beach, the movies and attending school are all different for a person that has to consider excessive sweat. Hyperhidrosis and extra sweating can become a source of anxiety at any time, but when it’s flaring especially when it’s flaring.

Tips and Tricks for Coping With Hyperhidrosis and Excessive Sweating

Now that I’ve listed the ways hyperhidrosis may negatively impact social situations, I will now tell you my tips and tricks for coping with hyperhidrosis and living with excessive sweating that I have developed throughout my own experience.

Waterproof Makeup

The facial sweating that is the result if hyperhidrosis can ruin any makeup you may be wearing. I personally love wearing makeup every once in a while for nights out or on a day I feel like dressing up. Unfortunately, if I’m not careful with what products I use my makeup can end up dripping down my face. Utilizing a good primer and a waterproof foundation and concealer are a good start. Make sure your mascara and eyeliner is waterproof if you enjoy using those products. You can even find inexpensive brands at your local retailer and online. Many brands meet these suggestions.

Dressing in Light Layers

Very many people live in a place where the weather can go from cold to hot within a few hours. Dressing in light layers is the way to go. If you also suffer from temperature control issues spring layering is good strategy for you, too. Utilize cardigans because not only are they light but they also don’t take up too much room in a bag while out and about. If it is chilly in the morning wear a t-shirt and a cardigan over top. It is easy to take take it off later on in the day.

Portable Fans

This may seem a bit extreme, but if you’re prone to over-heating on a regular basis like I am, a portable fan can be invaluable. I got one for $8 from The Warehouse, and I love it. It’s rechargeable by USB and has multiple levels of intensity. This would be perfect for days at university during summer, long days of traveling, or days when you’re spending a lot of time outside in the heat.

Apply Multiple Layers of Antiperspirant

With secondary hyperhidrosis the sweat under your arms can become excessive and can be very hard to manage. Recently I have started using multiple layers of antiperspirant using two different types and I find this helps well for summer. I use a cream antiperspirant under my arms first and then a spray antiperspirant on top. While this does not completely stop underarm hyperhidrosis it does make it more manageable. There are some more aggressive options you may discuss with your health provider in some places.

Body Wipes and Shower-less Body Wash

If you have hyperhidrosis and live with excessive sweating in addition to chronic illness then managing your hygiene can be very difficult. Bathing, for example, can be very difficult for those who experience symptoms such as chronic pain and fatigue. Some days many Chargie’s do not have the energy to shower. Other days I may end up perspiring a lot requiring multiple showers. In these cases it is convenient to use deodorant body wipes or shower-less body wash. Deodorant wipes are targeted especially at lessening odor. Shower-less body wash can be used without washing it off and do the same thing.

Many people like to use baby wipes in the place of deodorant body wipes. I find that baby wipes don’t work very well in comparison. Products specifically targeted at killing sweat caused germs and odor do a much better job, and I find that body wipes are more moist with product, therefore you end up using less wipes.

When you experience hyperhidrosis and living with excessive sweating it can feel very isolating. However, there are things you can do that make coping with it a bit easier. It was also helpful for me to learn that isn’t something that I go through alone. Surrounding yourself will people who understand your condition can also make a huge difference. Having a non-judgmental environment can become your social safe space. I know that when I start sweating excessively my close friends won’t judge me for it. Therefore I never become anxious about it around them.

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

May 18, 2019June 21, 2019

Depression: In The Depths Of The Nothingness

Writing may be one of my biggest loves in this life, but it’s also one of my biggest struggles thanks to my health. As a person with chronic illnesses and major mental health struggles, I don’t write as much as I would like to or as much as I used to.

I still find the same release in writing that I always have found but, more often than not, I just can’t bring myself to write. Post-exertional malaise from my ME, and cognitive difficulty from my fibromyalgia makes the activity of writing difficult in itself, but there’s more to it than that for me; a different kind of blockage that can be hard to pin down.

The Blockage

This piece has been doubly difficult for me to write. Not just because of the writing process itself, but because of the subject matter. I chose to write an article for Mental Health Week about depression. And depression makes me lose interest in the things I love. There’s definitely an irony in struggling to write about depression because of depression, isn’t there?

I want my writing to make others feel less alone, but how on earth was I going to approach this topic? When it comes to something as multifaceted as mental health, it can be difficult to know where to even start. My brain quickly got to work on bullying me.

Why would anyone want to read something you wrote anyway?

You have nothing interesting to say. All your work is bland and rubbish, just like you.

I don’t know why you even bother.

There are too many better writers out there. You’ll never be taken seriously.

Your thoughts aren’t valuable enough to be paid attention to.

So here I am, scrambling around inside my foggy brain trying to ignore the bullying thoughts in my head and to figure out whether anything I have to say about depression will even make sense enough to shape into an article.

Describing The Indescribable?

Up until a few years ago, I thought of depression as an intruder. It would fully catch me off guard, kind of like a huge predator stalking in the shadows and then jumping out in front of me when I least expected it. Some people describe depression as a black dog which won’t leave you alone. As my life has gone on, I’ve come to see it more as some kind of dangerous plant, thriving in the darkness and slowly growing; creeping its way into my life until I’m swamped.

Its roots are deep, and its vines reach further and further into my present consciousness until I can feel them grasping me by the limbs and the throat, pulling me backwards into the dark. Sometimes the vines loosen their grip and retreat, and I can breathe again but, even then, I still know they’re only biding their time. They’re still there, lurking…ready to creep out of the shadow again at some point. And as the years have gone on, each trauma or stress that life has thrown my way has only strengthened the roots in those murky depths of my psyche.

As well as the stigma, there’s a lot of misconceptions out there about depression. People often think that feeling down for a few days or a couple of weeks is being depressed. It’s not. That’s just feeling blue, which is something that most people experience at some point in their lives. Feeling down occasionally is part of our normal range of human emotion, just like feeling sad is. Feeling sad when something bad happens is not depression. That’s a normal reaction to something bad happening, and will usually dissipate with time. When the low mood persists long-term, that’s when it becomes a problem.

Doctors and psychologists usually look out for common symptoms when diagnosing depression, such as a loss of interest in things that you normally enjoy, feelings of worthlessness or of despair, feelings of unrealness and even urges to harm yourself in some way. Check out this guide from the charity Mind to find out more about symptoms, causes and potential treatment options. Their website is also full of resources about other mental health disorders and information about where to find help.

The Numbness

Perhaps my least favourite symptom that comes from being in a depressive episode is what I now call the nothingness. This is something that I have experienced since I was a teenager and still frightens me to this day when it happens. It’s not that I feel sad, or upset or even down, I just feel…nothing. In these times my emotional range seems to just shut down. I can’t feel anything or recall how emotions normally feel. It is the complete absence of feeling, and I wouldn’t wish it on anybody. It is the most isolating thing I have ever experienced, and every time I feel my mental health slipping I become fearful of that emotional numbing.

When I’m numb, I would kill to feel sad or angry because then at least I would feel something. Many people I’ve tried to express this to simply can’t wrap their heads around it. I discovered a few months ago that this kind of emotional shutdown can be a response to past psychological trauma.

Going back to writing, it’s really no surprise that I struggle to do it a lot of the time. It’s sometimes like the parts of my brain that feed into creativity have been boarded up like an old abandoned house. It’s like somebody cauterized by ability to even think clearly, let alone comprehend those thoughts and translate them into words.

Depression

Depression makes it feel as though my brain just won’t work in the way it’s supposed to; the way I know it can work. It feels like there is a thick cloud of fog filling up the spaces in my head. Things don’t seem right; things don’t make sense. I can’t even make decisions. The smallest of decisions feels disproportionately impossible. Do I want a glass of water or a glass of juice? Do I prefer red or blue? Am I a good person or a bad person for the answers I picked? I can’t decide what I want to watch, what I want to read, what music I want to listen to.

I know that I’m passionate about things, somewhere beneath all the fog, but those things seem shapeless; far away from me. I feel completely disconnected from myself, as though the body and mind I inhabit do not belong to me. I interact with my surroundings, but it’s all robotic. I’m not sure what is real.

It’s a cruel state of mind to be in. Perhaps it’s even crueller that all of this is invisible to the world around you and can be masked by a simple “I’m fine!” when somebody asks you how you’re feeling.

We have to be brave enough to answer “I’m not fine.”

About the Author:

Charlotte is a 26 year old writer from West Yorkshire in England. After a spinal cord tumour left her disabled at 19, she started writing about her experiences alongside her university studies. Her blog is called Of Books and Stardust. She also has ME and fibromyalgia, and has experienced mental health problems for most of her life. She writes to raise visibility and to help others feel less alone. Charlotte adores literature, has always loved caring for pet bunnies (or do they care for her?) and is passionate about spirituality, paganism and witchcraft.

August 26, 2016November 1, 2017

What are My Awareness Ribbon colors?

You see them everywhere, awareness ribbon charms, pins, magnets. Do you ever wonder what the colors mean or wonder which color represents your chronic illness? We have gathered the most common Spoonie and Chronic Illness ribbon colors here to help you out.

BLUE

Ankylosing Spondylitis

Arthritis

Chronic Fatigue Syndrome

Dysautonomia

Hydraencephaly

Restless legs Syndrome

TWO TONE BLUE

Hydrocephalus

LIGHT BLUE

Addisons Disease

Behcets Disease

Chronic Illness

Graves Disease

Thyroid Disease

DARK BLUE

Arthritis

Chronic Fatigue Syndrome

Crohn’s Disease

BURGUNDY

Migraines

GREEN

Gastroparesis

Spinal Cord Injury

LIME GREEN

Lyme’s Disease

LIGHT GREEN

Celiac Disease

TURQUOISE

Dysautonomia

TEAL

Polycystic Ovarian Syndrome (PCOS)

ORANGE

Lupus

Multiple Sclerosis

WHITE

Invisible Illness

PURPLE

Chiari Malformatio

Chronic Pain

Crohn’s Disease

Colitis

Epilepsy

Fibromyalgia

Hidradentis Suppurativa

Lupus

LAVENDER (PERIWINKLE)

Eosinophilic Disorders

Irritable Bowel Syndrome (IBS)

RED

Congenital Heart Disease/Defect

Haemophilia

SILVER

Brain Disorders

Encephalitis

Sciatic Disorders

YELLOW

Endometriiosis

Hydrocephalus

ZEBRA PRINT

Ehlers Danlos Syndrome

May 17, 2016

Dysautonomia

Dysautonomia (“Dys” from the Greek word for bad or malformed and “Autonomia” referring to the body’s autonomic nervous system (ANS)) is an umbrella term referring to a failure of the sympathetic or parasympathetic parts of the autonomic nervous system (ANS). It may also refer to an overactive ANS. The ANS is what controls the involuntary functions of the body. It affects the nerves, which carry information from the brain to the rest of the automatic nervous system, including the heart, blood vessels, bladder and sweat glands.

Dysautonomia can cause problems within the heart, affecting heart rate, body temperature and blood pressure. It is often a secondary symptom of other chronic illnesses. Some dysautonomia conditions are reversible however, many conditions, such as co-morbidity with Parkinson’s disease are not. It may affect a local area of the body, or be more generalized throughout the body.

Dysautonomia affects over one million Americans and close to 70 million people worldwide. It affects both men and women. Despite its prevalence, dysautonomia may take a long time to be diagnosed due to the lack of awareness among patients and physicians. It is an “invisible” disease, as symptoms occur within the body. Often symptoms are more observable after the patient is exposed to heat, anxiety, or physical activity.

The most common forms are POTS (Postural Orthostatic Tachycardia Syndrome), NCS (Neurocardiogenic Syncope), MSA (Multiple Systems Atrophy) and PNF (Pure Autonomic Failure).

Causes

Dysautonomia can occur due to injury of the ANS from another disorder, and may be genetic. It may also be caused by exposure to toxic chemicals, trauma or a viral illness. Some of the diseases that may cause dysautonomia are:

Diabetes Multiple Sclerosis
Alcoholism Guillian Barre Syndrome
Parkinson Disease POTS
Ehlers-Danlos Syndrome Lyme disease
Injury to the spinal cord or nerves HIV
Celiac Disease Lupus

Symptoms and Diagnosis

To diagnose dysautonomia, the physician will test the functionality of the ANS, especially on the organs that are affected. Tests will likely include measuring blood pressure and heart rate in several positions, using a tilt table, sweat testing, and deep breathing.
Common symptoms of dysautonomia are fatigue, impotence in men, faintness upon standing, rapid pulse rate with exertion, weakness, dry mouth, cognitive impairment, orthostatic hypotension, urinary incontinence, and constipation.

Treatment and Management

While there is generally no cure for dysautonomia, treatment of the co-morbid illnesses may be beneficial in reduction of the symptoms. Medications may be used to treat the individual symptoms of dysautonomia, such as controlling blood glucose and using medication to treat acid-reflux, or giving injections of botulinum toxin type A to manage hyperhidrosis (excessive sweating). Other management measures can include elevating the head of the bed, and adding a high-salt diet and other lifestyle changes. Taking cooler showers, standing slowly from a sitting position and other postural changes may help.

Prognosis

Depending on the cause of dysautonomia in the individual, prognosis can vary.

A few great places to find reference materials about dysautonomia are the National Dysautonomia Research Foundation, and the National Institute of Neurological Disorders and Stroke. At Dysautonomia International, there are excellent materials for patients, physicians and educators, including brochures and slideshows to spread awareness of dysautonomia.

May 6, 2016May 5, 2016

Battling Fatigue in Chronic Illness

By Vanessa Blevins

Chronic Illness can take many forms and will have varying impact on each patient, but one symptom that is commonly reported as severely debilitating is fatigue. You could have a condition that specifies fatigue such as Chronic Fatigue Syndrome or Fibromyalgia, or it could be a side effect of one of numerous medications; if you’re faced with chronic illness you’re probably facing crippling fatigue on a daily basis. So what can you do to help yourself stay active? For this article we’ve scoured the internet for every idea we could find to help you battle your fatigue.

Sleep.

We’ll start with the obvious. Your doctor has said it, your mother has said it, the random person in the checkout line at the grocery store has said it. You need to sleep. Well I know it’s not that easy and you know it’s not that easy but the kind-hearted well-meaning souls who say these things don’t always know it’s not that easy. Getting to sleep isn’t easy, staying asleep isn’t easy, and if you’re like me even when you do sleep you don’t get the restorative sleep you need to counteract fatigue. Where was I going with this? Ah yes, we were trying to get to sleep.

When a parent brings a new baby home from the hospital, (work with me here, I’m going somewhere) they read a lot of books about bedtimes. One of the most important universal tips across the board in all of the books is, they all tell you if you want to get your kid to go to bed without any trouble it is important to have a bedtime routine. Have a bath with some lavender scent, snuggle up with a quiet book, say goodnight prayers, everything in the same order, every night, so it teaches them that this is what they do when it is time to sleep. Once they’ve done all of the steps, the next obvious step is sleep.

You see where I’m going with this? Set yourself a bedtime routine. It doesn’t have to be a complete bubble bath with a novel and aromatherapy candles, but if you give yourself your own quiet time it might help you wind down a bit before bed. No matter how fatigued you feel, we both know your brain isn’t going to hush anytime soon, so steep yourself a mug of caffeine-free tea, turn off all the electronics, dim the lights, and snuggle up with your own relaxation tool. Listen to a song or two of your favorite musician or read a chapter of a good book. Take a few minutes to practice some meditation or breathing exercises. I know it sounds really silly, but I have a mobile in my room. It’s not a baby one for a nursery, it is actually a modern art piece, but I use it the same way that an infant would. When I just can’t for the life of me make my brain turn off, I’ll watch it’s slow rotation until I’m finally able to drift off into oblivion.

Golly I could write forever about trying to get to sleep. Herbal sleep aids, prescription medications, custom bedding, fancy mattresses, endless arrays of pillows, white noise machines, air purifiers, hypnosis, meditation, even overnight sleep studies and brain wave research. I could keep going, but that’s not my focus today so let’s move along now, shall we?

Conservation of Energy.

Also much easier said than done, I know. But there are sometimes options available, although a lot of these involve seriously coming to terms with your status as a disabled person. Every person who suffers from chronic illness is at a different stage in their journey, so this is a tough section to write. There is a very wide range of ages in our community, as well as significant diversity in the age of onset/diagnosis. I can only speak from personal experience but I know it took quite a bit for me to go out in public using a mobility assistance device at my age. I was in my early 30’s, very pregnant, and very self-conscious the first time I used my walker. Now I’m about to turn 35 and use my cane regularly. I’ve become much more confident about it in the past five years (if I do say so myself), but I have to admit that the looming prospect of a wheelchair still leaves me feeling pale and somewhat dizzy. But then again, so does the fatigue.

I use myself as an example, mostly because I know me and I have permission to share my story, but also because I know that others feel the same trepidations that I felt in the past and that I’m feeling now, and I want you to know it’s OK to feel that way. I also want you to know that it is 100% completely and totally OK for you to use whatever mobility assistance device(s) you and your doctor deem necessary for your well-being! If using a walker or a wheelchair helps alleviate your fatigue so that you can keep living how you want to and keep doing the things you love, that is a blessing! Don’t let negative thoughts tell you that you’re failing. Use the tools at your disposal with pride, it means you’re taking charge of your chronic illness and fatigue!

If your fatigue is so bad that even a mobility device won’t help you get out and about, don’t feel guilty if you have to cancel plans. Even people who don’t have chronic illness have to take a rain check now and then, it’s alright if you do, too. It’s often hard not to feel guilty when our health gets in the way of something we wanted to do, but we have to remember that this illness isn’t a choice. And while we are remembering things, I’ll take this opportunity to bring up the last thing you went to, do you remember? You told someone, “Next time I decide I’m going to push myself when I shouldn’t, remind me how I feel right now.” Well this is me, reminding you!

Vitamins, Supplements, & Energy Drinks.

Just as with sleep aids, there are any number of over-the-counter and prescription options available that could provide some relief from the constant strain of fatigue in a life already plagued with chronic illness. Some patients find relief from fatigue in the form of herbal supplements and other products. There are too many to even begin to list them here, from energy drinks and pills that are readily available at the corner store, to custom vitamin blends and powders designed by boutique nutritionist shoppes for a hefty commission, to pharmaceuticals available by prescription only. There is a multi-billion dollar market aimed at consumers who are desperate for a little pep in their step. Now, I do partake of the occasional energy drink, but I get nervous about adding vitamins and whatnot due to my unfortunate experiences with drug interactions, so I usually talk to my doctor if I think about anything stronger than a Red Bull. I’ve read great things about managing fatigue with prescription medications, but I’m not at a point where I’m considering that step for myself. The point here is, your doctor or pharmacist is a good place to start if you’re looking for advice about adding a supplement.

Exercise.

(I almost heard you groan, but I couldn’t because mine was louder.) I’ve read quite a few great things about regular exercise helping with fatigue. My personal experience has been less than stellar, but I’ve never been all that athletic in the first place so I may not be the best case study. For more information on whether or not exercise can help you with your fatigue, consult your doctor or a physical therapist for an evaluation. Don’t go to a normal gym! Most of them do not have staff who are trained in working with people who have physical limitations, and they are trained to push their clients well beyond their limits. That is not a safe environment for those of us with fatigue and other ailments. Please, I beg of you, if you do choose to go the route of exercise induced endorphin highs, do so in a safe environment, in a responsible manner, with properly trained professionals ready and able to help. And may the spoons be ever in your favor! (That’s a little “Spoonie”/Hunger Games joke from our support group.)

Keep Hoping. Keep Dreaming. Keep Innovating.

Whether you are new to your diagnosis and the fatigue that comes with it, or you’ve been around the dance floor a few times together, there are medical and scientific advancements being made every day. Technology is progressing at a pace that I can honestly say is starting to make me dizzy. We never know what could be around the corner, and with the way social networking is these days, you never know if a solution you think up could be turned into a reality! Much love and hugs and spoons!

April 28, 2016June 21, 2019

A Spoonie Story: Kathy Marie

I just decided to leave yet another “support” group for chronic pain… because all too often there is a subtle, and sometimes not so subtle- tendency to try to one-up another in terms of pain. “Oh I have EDS- you don’t know pain until you know EDS pain” “Well, I have CRPS, you don’t know pain until you know CRPS pain” “I have Fibro- and that trumps EDS and CRPS- I’m in pain 24/7” “Well I’m in pain 25/8- beat that” and on and on. Gawrsh it’s so tiring and annoying!

Experiencing Pain

Pain is pain. All of us with CP conditions know pain. We know it intimately. We experience pain levels that would have “normal” people dropping to the ground in agony. And does that make us better than anyone else? Uh no- it doesn’t! I’m so tired of the constant battle to compare and be the #1 Pain Warrior. Just battling the pain alone makes me exhausted. Why should I have to “prove” my pain is “more” than anyone else’s? Frankly- I hate that ANYONE suffers from chronic pain, at any level.

I hurt. I hurt a lot. All the time. In fact, after being awake for more than 72 hours dealing with a flare, I crashed yesterday and slept 17 hours. And I’m awake now- still feeling tired. Still hurting. And that doesn’t make me better than anyone else. It’s just my reality. And I am positive that other CP sufferer’s realities are just as painful, just as tiring, just as depressing. I pray for all who hurt. And I pray that we can be more aware of one another’s battles, and just wish each other comfort. Recognize, validate, support. There’s no possible need to be “the best” at it.

Pain is Life-Changing

I’m sad that it seems that one of the constants of dealing with CP is negativity and competition. I really hope to change the stigma that is attached to CP through my writing- maybe I can’t change the worldview, but if just one person says, “Wow, I never knew pain could be so life-changing” then I have done my job.

Yes, pain IS life changing. And a good amount of that change is scary, and dark, and horrible, and maddening and lonesome. But some of that change- some of it is good. And precious. And miraculous. And life affirming. And when you think of it in those terms, it doesn’t seem quite so competitive, does it? Instead, it becomes a very personal and meaningful way to own your pain and apply what you have learned about it to other areas of your life.

How I Cope

I journal daily- sometimes poetry, but it’s mainly free-form journaling- just whatever comes to mind and let it all out; and lately I’ve been journaling ALOT about this Chronic Pain journey I have found myself on. Just the other day I leafed back to the beginning of one of my journals and I read something kind of similar to today’s frustration. That journal was 6 years old.

I have taken a huge leap of faith and begun my own blog, “Blessed- My Chronic Pain Journey” on Facebook, inspired by the Spoonies For Life Support Group that I am a part of. I’ve been writing forever, but I always poo-pooed the idea that it was ever “good enough” to publish. I posted in the Spoonies support group a shorter version of what you are reading now, about my decision to leave another Facebook support group due to the sense of one-uppery (is that even a word lol? :-p ) and competition among its members.

A fellow CP Warrior and writer, Tina Barzano, encouraged me to write an article for the SFL website… and then it was like a cosmic explosion happened and I realized that I could use all this life-changing pain for the greater good. I hope that this article and my blog inspires others as wonderfully as Spoonies For Life has inspired me. I find it amazing that at age 43 and at the most challenging time of my life, I am experiencing the joy of rebirth.

I firmly believe this all happened for a reason- my post, all the wonderful supportive comments, Tina’s gentle persuasion; I’ve been searching for some meaning to my CP journey, a reason as to why I’ve been cursed with such a life. After this experience, and the wonderful responses I received, not only do I think I found that reason- but I’ve also changed the word cursed… into blessed.

Namaste, dear ones. Thank you for inspiring my daily and hourly- and I wish you all pleasant days and peaceful nights.

Bio:
Kathy Marie is a happily married 43 yr. old mom of 4- 3 girls and a boy- ages 16 to 26. Her hobbies include writing, reading, adult coloring pages, cooking and when health permits, hiking.

Kathy has been diagnosed with Fibro, RA, Hypothyroidism, Endometriosis, GPD (generalized panic disorder) Chronic Fatigue Syndrome and Depression.

On a typical pain day, you can find KM doin’ the housewife thing and taking frequent breaks to madly type down the thoughts that fly around her head regardless if they make sense or not. And often, they don’t. On a typical flare day, you can find KM curled in a miserable ball and repeating the phrase “This too shall pass” while she battles the twin demons of pain and panic.

All of what she deals with and experiences on those typical days becomes fodder for her blog “Blessed- My Chronic Pain Journey.”

April 7, 2016April 10, 2016

Fighting Fatigue in Chronic Illness

Chronic Illness can take many forms and will have varying impact on each person, but one symptom that is commonly reported as severely debilitating is fatigue. You could have a condition that specifies fatigue such as Chronic Fatigue Syndrome or Fibromyalgia, or it could be a side effect of one of numerous medications; if you’re dealing with chronic illness you’re probably facing crippling fatigue on a daily basis. So what can you do to help yourself stay active? For this article I’ve tried to come up with every idea I could figure out to help you battle your fatigue.

Fatigue takes it's toll. — Fatigue takes it’s toll.

Sleep. I’ll start with the obvious. Your doctor has said it, your mother has said it, the random person in the checkout line at the grocery store has said it. You need to sleep. Well I know it’s not that easy and you know it’s not that easy but the kind -hearted well-meaning souls who say these things don’t always know it’s not that easy. Getting to sleep isn’t easy, staying asleep isn’t easy, and if you’re like me even when you do sleep you don’t get the restorative sleep you need to counteract fatigue. Where was I going with this? Ah yes, we were trying to get to sleep.

There’s always tomorrow!

Conservation of Energy. Also much easier said than done, I know. But there are sometimes options available, although a lot of these involve seriously coming to terms with your status as a disabled person. Every person who suffers from chronic illness is at a different stage in their journey, so this is a tough section to write. There is a very wide range of ages in our community, as well as significant diversity in the age of onset/diagnosis. I can only speak from personal experience but I know it took quite a bit for me to go out in public using a mobility assistance device at my age. I was in my early 30’s, very pregnant, and very self-conscious the first time I used my walker. Now I’m about to turn 35 and use my cane regularly. I’ve become much more confident about it in the past five years (if I do say so myself), but I have to admit that the looming prospect of a wheelchair still leaves me feeling pale and somewhat dizzy. But then again, so does the fatigue.

I use myself as an example, mostly because I know me and I have permission to share my story, but also because I know that others feel the same trepidation that I felt in the past and that I’m feeling now, and I want you to know it’s OK to feel that way. I also want you to know that it is 100% completely and totally OK for you to use whatever mobility assistance device(s) you and your doctor deem necessary for your well-being! If using a walker or a wheelchair helps alleviate your fatigue so that you can keep living how you want to and keep doing the things you love, that is a blessing! Don’t let negative thoughts tell you that you’re failing. Use the tools at your disposal with pride, it means you’re taking charge of your chronic illness and fatigue!

It's OK to take a rain check now & then. — It’s OK to take a rain check now & then.

And while we are remembering things, I’ll take this opportunity to bring up the last thing you went to, do you remember? You told someone, “Next time I decide I’m going to push myself when I shouldn’t, remind me how I feel right now.” Well this is me, reminding you!

Vitamins, Supplements, & Energy Drinks.

fibromyalgia medicine — Vitamins & Supplements

and other products. There are too many to even begin to list them here, from energy drinks and pills that are readily available at the corner store, to custom vitamin blends and powders designed by boutique nutritionist shoppes for a hefty commission, to pharmaceuticals available by prescription only. There is a multi-billion dollar market aimed at consumers who are desperate for a little pep in their step. Now, I do partake of the occasional energy drink, but I get nervous about adding vitamins and whatnot due to my unfortunate experiences with drug interactions, so I usually talk to my doctor if I think about anything stronger than a Red Bull. I’ve read great things about managing fatigue with prescription medications, but I’m not at a point where I’m considering that step for myself. The point here is, your doctor or pharmacist is a good place to start if you’re looking for advice about adding a supplement.

Diet & Exercise. (I almost heard you groan, but I couldn’t because mine was louder.) I’ve read quite a few great things about how diet changes and regular exercise can “cure” fatigue! (Man I wish we’d decide on that sarcasm font.) Those of us who aren’t already eating a well balanced diet could probably do with a few more salads and a few less burgers, but if you’re already watching your food pyramid and caloric intake choosing a wacky diet isn’t going to do anything but make you difficult to go out to eat with.

My personal experience with exercise has been less than stellar, but I’ve never been all that athletic in the first place so I may not be the best case study. For more information on whether or not diet changes or exercise can help you with your fatigue, consult your doctor, nutritionist, or a physical therapist for an evaluation. Don’t go to a normal gym! Most of them do not have staff who are trained in working with people who have physical limitations, and they are trained to push their clients well beyond their limits. That is not a safe environment for those of us with fatigue and other ailments. Please, I beg of you, if you do choose to go the route of exercise induced endorphin highs, do so in a safe environment, in a responsible manner, with properly trained professionals ready and able to help. And may the spoons be ever in your favor! (That’s a little “Spoonie”/Hunger Games joke from our support group.)

Celiac Disease. According to the Celiac Disease Foundation, Celiac disease is an autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide, with 2.5 million Americans undiagnosed and at risk for long-term health complications. (https://celiac.org/celiac-disease/what-is-celiac-disease/) I mention Celiac because one major symptom that occurs during a gluten reaction is fatigue, and in extreme cases a severe reaction called gluten ataxia can occur. If you think your fatigue could be caused by or partly caused by Celiac Disease, please consult your doctor, and visit the Celiac Foundation website for more information.

Keep Hoping. Keep Dreaming. Keep Innovating. Whether you are new to your diagnosis and the fatigue that comes with it, or you’ve been around the dance floor a few times together, there are medical and scientific advancements being made every day. Technology is progressing at a pace that I can honestly say is starting to make me dizzy. We never know what could be around the corner, and with the way social networking is these days, you never know if a solution you think up could be turned into a reality! Much love and hugs and spoons!

March 13, 2016June 21, 2019

Spoonie Story: Sarah

I was a fairly happy child. I laughed, danced and sung. I played with my brothers. I was in a choir and I loved it. I was confident and bright. This was when I was about 6 years old. Things are hazy from then on. I was stressed out.. severely. I was in a rough home situation.. and I experienced a lot of psychological abuse from a young age up until my teen years. Most of my childhood was spent stressed out.

I also started putting on weight when I was about 7 and it kept creeping up even though I ate normal foods and played sport. When I was 14 my mum noticed I was sleeping a lot and keeping to myself a lot. She took me to a psych and I was diagnosed with depression.

Teenage years

Anyway.. skip a head a few years. I was 16 and in year 11 in high school. That’s when the fatigue really hit. I would skip school just to sleep. People thought I was just depressed, and I was, but none of us knew that was the beginning of me being seriously ill. I was still able to go out and be somewhat normal at that time but things just gradually got worse and worse.

The insomnia would keep me up all night and then I would sleep all day. Or if I did get up in the day I was horribly fatigued. I started to withdraw and go out less and less because I was so tired. Usually any mentions to doctors about fatigued were passed off so no one ever explored any other options.. I wish they had.

The first big breakdown

I remember when I was around 21 or 22 I started experiencing severe dizziness and weakness. I would get up and have major headspins to the point of not being able to lift my head up. If I went out I would have to hold on to a friends arm or something because things would spin. As even more time went on more things popped up along with the anxiety, depression and fatigue which was gradually worsening.. brain fog.. sinus issues and other symptoms.

There was one time.. probably about 2 or 3 years ago.. my mum was in hospital.. I’d been binge eating party finger foods and I was stressed and anxious being alone in the house and worrying about mum. This was the first time I remember getting numbness in my body. It was my full left arm and some of my left leg. As you can imagine.. I was terrified. And alone.

Some friends came over one evening to celebrate a friends birthday and I felt weaker and weaker as the day went on.. and the numbness. I broke down crying on the phone to mum and I was like.. what do I do? I ended up calling an ambulance. I was shaking from fear and my dad met me there. They did all the standard tests. Monitored me for awhile and basically said.. “It’s just anxiety. Lose some weight. And don’t sleep on your left side.” They gave me an attitude like I had wasted their time completely and I was heartbroken but also kind of relieved.. if it was life threatening.. they wouldn’t be letting me leave. Still scared though. I went home and my dad ended up staying at my house with me for about a month because I was so sick (and scared) I could barely do a thing. Even feeding myself was a task because my mouth was shaking.. literally. I eventually calmed down. Still had symptoms but not as severe.

Still No Diagnosis

Since then.. the numbness comes and goes. I’ve also developed body aches and pains.. the brain fog is worse and I’m pretty much housebound and bedridden (although I can still walk around) from it all.

I moved from that old house in with my dad for a year and that was hard because even though he’s seen me unwell he still doesn’t fully understand that I am chronically ill and its very hard for me to do things.

Then recently I moved again into a new place with my mum.

Fibromyalgia and CFS

Last year in November I finally got diagnosed with fibromyalgia and chronic fatigue syndrome. That is only AFTER my doctor saw me with a walking cane and decided to take me seriously. I had already complained of the numbness, fatigue and all of that before. I’d lost faith in all doctors by that point. Anyway it was a neurologist who diagnosed me.

Fibro Flare

Since then I’ve had some god awful flare ups. I’m experiencing one now (yes, I’ve only just started to educate myself about flare ups) nobody told me they were a thing and whenever they happened severe anxiety would ensue.

Right now I’m just trying to remain calm and accept what I am dealing with and redirect negative thoughts. I honestly believe this will help calm down my symptoms. I’ve become a “master googler” over time and that hasn’t helped anxiety.. but I’ve been trying to figure this all out. I’m not getting any help but I don’t believe I’m stuck with this.. some days I need to keep that mindset in order to get myself through the rough moments and some days I honestly and truthfully believe it.

What I’ve learnt so far is that stress can mess you up in ways we don’t even think about. I believe the constant stress did that to my body. I’ve learnt that what I’m dealing with is most likely auto immune so I’ve cut out foods that trigger autoimmune reactions like dairy, grains, gluten and so on.

I ate butter and rice recently for a few weeks thinking I’d be okay and I think that’s what triggered my recent flare up. I believe that I have a large candida overgrowth and leaky gut but when I mentioned it to my doctor she shut me down.
I read a woman bedridden with fibromyalgia and found out she had adrenal fatigue and a massive candida overgrowth. She went on the candida diet and within a year she healed. I’d like to eventually do that.. I’m trusting my intuition on this one.. seeing as that’s all I’ve got.

Stay positive and try not to stress

But I’m not at that point just yet to take that 100 percent seriously. Right now im just focusing on stress relief. That… is a huge part of this. You’d think I’d have nothing to stress about seeing as I’m home all day. I don’t work and I’m not capable of doing much around the house due to being too tired. I used to wake up stressed and anxious and go to bed stressed and anxious.. its only been in the past week that I decided.. no. I need to get this under control.

All I could think about was.. I’m sick.. I’m scared.. what do I do.. I need a plan.. when will I get better *googles all day and night*. That.. was not helpful. This is just my personal belief.. but I do believe I have angels around me.. with me.. and guiding me.. and I feel like they were telling me that I needed to not fight against this and accept it. Not accept it in the sense that I’ve given up.. accept it by just.. keeping calm.. saying to myself.. this is what I am experiencing and I’m just going to remain calm and experience it.. it has helped.

I still have bad moments but its definitely helped. I feel like they were also telling me that when I am calm.. everything I need to know to start getting better.. will come to me.. that I know the answers and I know that to do and that I need to trust my intuition. So that’s what I am doing and seeing as I don’t get help on any other way.. I may as well listen to my intuition and use that as guidance.

Loneliness

I’ve lost a lot of friends being ill. I don’t have friends, family (apart from mum) or doctors support. I don’t see anyone apart from mum and my cat.. accepting that has been hard too.. I’m 26 years old and when I’m feeling good.. I am happy and full of life and want to share that with people and I can’t.

As I said…. all I can do is take small steps to get better.. and listen to my intuition. I hope someday I can get up and think to myself.. wow I feel so refreshed and full of energy.. I’m going to go for a walk or go shopping. I’d like to travel overseas one day. I’d love to get married and have kids eventually. I want to write a book and I want to use my wisdom and experiences to help others one day as well. I’d like to think that these hard times are simply shaping me into a person that can do good/great things in this world. Keeping that mindset also helps me keep the faith and stay strong.