The moment the words ‘get active’ escape their lips my focus shifts 100% to holding back the incredible urge to roll my eyes. For the most part, unsuccessfully.
It’s like constantly replaying the perfect vine loop of watching Groundhog Day over and over. We keep hearing how we need to get active in order to feel better. But, what people don’t understand is, we need to feel better in order to get active in the first place.
Press play and repeat day after day after day the exhausting loop plays.
For five years I spent a lot of days, months actually, beating myself up for not being active. It’s exhausting silently screaming at yourself constantly to get up and get active.
Then about a year ago I started listening to music again. Not only did the right playlist cheer me up, but often I’d catch myself bee bopping to the music.
Don’t get me wrong, I wasn’t pulling off DWTS or anything. Sometimes I was simply swaying to the music or shuffling around like Tim Conway. But, I was standing and I was moving.
Which when you are battling fibromyalgia’s chronic pain, counts as getting active as far as I’m concerned. Music doesn’t always get me moving. But, it does some days and in my opinion, that’s better than no days at all.
Anyway, I remembered how much I loved going out dancing and how good it made me feel and so for a while now I’ve been working at wiggling my butt daily.
The right playlist lifts my spirits and gets me moving
I created a bunch of personal mood–lifting playlists. Each one is 6 songs and about 20 minutes long. While prepping for my shower, I press play, and more days than not the music gets me swaying. I always try to get boogieing before hopping into the shower, because I’m usually physically zapped after.
Turns out, well for me anyway, that music is good medicine. Hmmm, who knew?
What I had to learn was, to set the bar at a realistic level for me. And, to give me credit for any and all physical activity. To encourage me to get up and just get moving instead of putting myself down because I expected my version of “getting active” to be on par with die-hard gym-goers or the people I see out jogging.
It’s time Fellow Fibro Warriors to pat yourself on the back each and every time you wiggle that butt, even if it’s ever so slightly.
Why my own of course. Rationally I’m aware that there is no magic bar that’s been set for me by others. There is no invisible line of measurement being monitored for results. Nobody is judging my achievements let alone defining what those are.
Well, that’s not entirely true. There is me, and I’m quite adept at setting the bar way too high for my current physical state. I’m living a life with Fibromyalgia and I won’t cut myself any slack, nor give myself proper credit for the incredible effort I put into moving around each and every single day of my life.
Rationally, I know this. But, unfortunately, that doesn’t make it any easier to accept. Nor does it keep me from constantly nagging myself in my head. It’s exhausting, and so…
Not only will I be taking it one task at a time, but I’m also going to pat myself on the back whenever I finish one. I’m switching into positive reinforcement mode, stepping away from negative mode, and becoming a cheerleader in my mind.
Today is a fibromyalgia day. Not a flare, but rather a not-so-subtle WARNING. If I push too hard there will be consequences.
Here goes, I’m giving encouragement a whirl. Congrats self! You made your bed, swept, took a shower, and tidied the kitchen.
Oh, right, and I also cleaned a toilet!
Take care, my chronic friends,BTW — you’re doing a great job today
Looking back to the beginning of my fibro tale. I don’t believe pharmacy was necessarily the wrong choice for me at the time.
If there’s one thing I’ve learned in the last two years it’s that no two single Fibro–tales are exactly the same. No two sets of triggers are exactly the same.
I had tumbled a little too far into the abyss and was dangling by a thread above the danger zone. So, I decided on the shortcut, quicker results to bring me back from the brink, both physically and mentally.
For this reason, I filled the first prescription. Which turned out to be the first of many more to come. As one might expect given the circumstances, I needed to get “a little bit well” to tackle life head-on again. So, I decided I would deal with the consequences later.
I don’t regret my choice otherwise, I believe without medicine and the support of my amazing Doctor I might not be here today sharing my Fibro–Tale with you.
After overcoming some uhhhhh shall we call them setbacks? A few months ago I finally decided it was time to start putting some of what I’ve learned about the many faces of my fibromyalgia to use. Now that the urgent stuff had been taken care of, time to try some new things.
I have decided to test the waters at decreasing the number of medications I am taking and to introduce some non-pharmaceutical healing “practices” into my life.
Why? I have finally reached acceptance. Two years into the fibro tale that is now my life, I am at last ready to meet the new me.
Chronic fatigue syndrome is a debilitating illness that takes many forms, has numerous symptoms, and no known cure is available from the standard medical community.
You might have some skeptical friends who doubt you are actually ill, perhaps they think you are simply malingering. However, chronic fatigue syndrome is a very real disorder affecting millions of people worldwide. Yet often patients can be told ‘it’s all in your head’, or suffer comments from family and friends like ‘oh yes I get really tired too’, both of which show a complete lack of understanding that the illness is in fact very real.
Unfortunately, its common name, ‘chronic fatigue syndrome doesn’t help people’s perception that it’s not a real illness and it’s simply tiredness. The illness has two other names, Myalgic Encephalitis (ME) and Systemic Exertion Intolerance Disease (SEID). Perhaps SEID helps describe the illness best as it does state a key feature of the illness i.e., the inability to tolerate exertion either mental or physical.
Fatigue is not the only symptom, although it is the one that most often typifies the disorder. And, this fatigue isn’t simply a feeling of being a bit tired or sluggish. A good night’s sleepdoesn’t help the fatigue which gets worse after mental exhaustion or physical activity and can take several days of bed rest to recover from.
There is no available test or biomarker for the illness. And, what makes this disorder baffling is the severity, type, and a number of symptoms individuals suffer from.
No single cause of chronicfatigue syndrome is known, and in fact, it can be caused by multiple things, but it is likely that trauma or several traumas of some description triggered it.
Because there is no test available, a diagnosis from your doctor is generally only arrived at by ruling out other illnesses such as hypothyroid, sleep disorders, kidney problems, etc. Additionally, a diagnosis can only be given after you have had the symptoms for at least 6 months.
Unfortunately from a naturopathic point of view, this is 6 months during which time you could have already started testing to find out what lies at the root cause(s) of your chronicfatiguesyndrome. It’s also 6 months during which time your symptoms and illness may be getting worse.
Some people mistakenly believe that they cannot recover from chronic fatigue syndrome because standard allopathic medicine has no ‘cure’, there’s no ‘pill’ they can be given to make chronic fatigue syndrome go away.
At the other end of the spectrum, others think if they just wait it out, chronic fatigue syndrome will disappear of its own accord. While this might happen, if you are lucky, it’s pretty unlikely. Without getting proper treatment, which gets to the root cause(s) of your particular form of chronic fatigue syndrome it can not only last for many years but during that time, gradually get worse.
Time can pass without your symptoms worsening, or new symptoms making an appearance. There can even be periods of time when you start to feel a little better. But there will be times too when you relapse and get worse. This is the point when your health declines even further.
You may be the type of person who is willing to wait it out to see if you can recover by yourself. However, I know from my experience that had I found the right naturopathic help and treatment sooner, my health would not have declined to the extent it did.
Chronic fatigue syndrome rarely develops overnight, but there is usually an event or series of events that lead up to it. The tricky thing is that it’s often not until you start getting treatment do you realize what those triggering events were.
During your journey with the illness, you’ll get many signs chronic fatigue syndrome isn’t going away. Most of the signs sneak up on you slowly. You adapt your life around your illness which can mask the reality of your worsening health condition.
The signs show themselves in various forms, some are physical, some mental, some behavioral, and some environmental. Many you may think do not relate to your illness at all. However, even the signs that show up in your home and work environment are rooted in your illness.
Additionally, there are a multitude of signs you should take careful note of to gauge if your chronic fatigue syndrome is not only hanging around but actually becoming worse.
It is foolish to ignore any of these signs as they are signals your illness is progressing and you need to seek out the right form of treatment if you want to have any chance of recovery.
Each individual has their own unique journey with chronic fatigue syndrome. Some have a particularly debilitating form of the illness leaving them completely bedridden. Others have a less severe form that gradually deteriorates as the illness progresses. Whatever form your chronic fatigue syndrome takes, there will be signs that it’s not going away…
1.You Don’t Feel Like Socializing – You may have been a bit of a social butterfly in the past. Always one of the first to eagerly accept invitations to enjoy lunches, family BBQs, nights out with the girls, gallery openings, shopping trips, dinner out with some fine dining, invitations to parties, etc. But now you realize you haven’t had an outing in months, you just declined an invitation to a close friend’s wedding too.
In fact when was the last time you enjoyed a social occasion. Come to think of it, the last time you went out you left early and couldn’t wait to get home, crawl under the covers, and sleep. And now, it just all seems like way too much effort to take part in any socializing at all.
It’s going to take too much energy to work out what to wear for starters. Then you need to get in the car and drive half an hour to get there. Don’t even mention how exhausting it is to have to make polite chitchat to people who, if you’re honest, just drain your energy. Nope…..all too hard, you just stay home.
2. You Can’t Cope With Even The Slightest Stress – Known for your calm demeanor and your ability to just get on with things now you find you’re flying off the handle with the least provocation.
You arrive at work feeling pretty exhausted, get settled at your desk with the first coffee of the day, and proceed to open your email. Scrolling through your emails, you ask yourself when did you start getting so many emails, how are you expected to reply to all these emails in a day?
Your stress level is already rising when your colleague walks up to you and asks a simple question about a project you are both working on and you not only don’t have the answer but you want to scream at him/her to just go away.
It’s only 9 am and already you feel completely overwhelmed and terrified that you’re going to drop the ball. Your workload hasn’t increased, in fact, it’s currently the quietest time of the year in the business but it’s all too much to deal with, you just don’t have the mental energy to deal with a normal workday in your normal efficient way.
3. You Can’t Stand Noise And Bright Lights – Summoning all of your energy, you pull an outfit together from the back of the wardrobe, slap on some makeup, and get in the car determined to enjoy a night out. The friends you are meeting up with are fun, you enjoy their company and you’re looking forward to a few laughs.
It’ll be great to enjoy a couple of hours of lighthearted chat and catch up with everyone. Something to take your mind off how lacking in energy you are is just what you need.
As you walk into the venue you’re hit with a wall of flashing lights above the band in the corner who is playing way too loudly. OMG, you didn’t realize there would be music and definitely didn’t expect the flashing lights. Your friends are there already, getting stuck into a few drinks, yelling to each other to be heard above the music.
They wave to you and you realize this was a BIG mistake, you just can’t do this. The music is pounding in your head and the bright lights flashing on and off are make you feel like you’re about to throw up.
Waving to your friends and shaking your head, you start backing towards the door. All you can see is the startled looks on their faces as they see you turn on your heel and get out of there as fast as you possibly can. And now you have another problem, how on earth are you going to explain you’re weird behavior to your friends who you just ran out on?
4. You Don’t Sleep Well At Night– You used to be such a great sleeper. Getting between 8 or 9 hours of sleep was easy for you. Now, however, getting a solid 8-hour sleep seems to be a thing of the past. In fact, you can’t remember when you slept soundly through one entire night.
Not only that but something seems to have happened to your body clock because you can’t fall asleep easily either. Sometimes you fall asleep, only to wake up again an hour later and you’re wide awake with no hope of dropping off to sleep again.
Lately, you’ve also developed a pattern of waking up at around 3.15 each morning and at that time you’re wide awake and there is absolutely no hope of getting back to sleep before the alarm goes off. And when you do wake up, you feel just as exhausted as you did before you finally got to sleep.
5. You Develop Feelings Of Isolation– You seem to have lost touch with family and friends. And, it seems as if nobody understands what you are going through with this illness.
It doesn’t help that you’ve been on the receiving end of comments that suggest ‘you’re just being lazy or that ‘everyone gets tired from time to time, after all, we all have such busy lives. Nobody seems to understand what you’re going through.
Your doctor can’t help you and you don’t know where to turn for help. It feels as if you are truly alone and nobody understands that you are actually ill.
6. You Are No Longer Able To Work Full Time– It hurts, you were at the top of your game, climbing the corporate ladder, doing great and the future was looking very bright indeed. Thinking you could recover you kept on pushing through, ignoring the signs your body was giving that it was all too much for you.
Now you’ve arrived at the heartbreaking realization that you no longer have the capability to continue on your present career path because you simply cannot work a full day. You are seriously considering giving up your full-time position and looking for a job that is less taxing. It seems that working a few hours a week is all you can manage with your current state of fatigue.
7. You Dread Being Asked To A Function – Once the life and soul of the party, you now cringe if someone asks you to a function as you simply don’t have enough energy to work AND socialize. Your well-meaning friend doesn’t understand you are ill, after all, you look OK on the outside, you definitely don’t look sick and you work full time in your career. So what could possibly be wrong with you?
Not only that, but you declined the last couple of invitations they gave you. It’s beginning to look as though you just don’t want to spend time with them and you know that pretty soon the invitations will stop arriving if you don’t attend something soon.
8. You Develop Intolerance For An Increasing Number Of Food Types – Lately, you’ve noticed everything you eat seems to set off a reaction and you start sneezing, your eyes water, and your nose runs uncontrollably. Only by taking an antihistamine can you get it to let up. And what’s with that strange blotchy rash on your chest?
But yesterday the glass of wine, latte, and cheese sandwich you had were all OK, today….. not so much. Now you need to work out which one of those items is causing you to react, or is it all of them, yikes? Eliminating several foods from your diet has already been carried out, but it seems the list of your food sensitivities just keeps getting longer. Soon it will be very difficult to choose food that you won’t react to.
9. You Feel Depressed– You feel utterly helpless, and don’t know where to turn for help with your illness. Everyone around you seems to be enjoying a happy and healthy fun-filled life.
But you are trapped and unable to move. Lately, you’ve started feeling angry that people seem oblivious to your condition. All you want to do is stay curled up in bed all day while your thoughts just keep dragging you down further and further. You are considering a visit to the doctor for some medication. Perhaps he can give you something to lift your mood, some ‘happy pills’. But you are not sure if you want to start medicating your feelings away, doesn’t seem right somehow.
10. You Suffer An Increasing Number Of Crashes– Lately it seems like the amount of activity you are able to carry out is becoming less and less before you crash. You used to be able to work part-time, carry out normal domestic chores and shop each day.
However, lately, you can’t do all the cleaning and shopping you used to do before you have to take to your bed to recover. Experiencing a crash used to happen maybe once a month when you overdid it with the cleaning and you’d spend the next two days in bed. Lately, you seem to spend more time in bed during the week and less time on chores and activities.
11. You Take Longer To Recover From A Crash– During the last month, you’ve spent more days in bed than out of bed. Recovering from a crash normally takes a couple of days, then you can get up and resume your semi-normal life.
Lately, though it seems each crash takes four or more days in bed before you recover sufficient energy to just get up and sit on the sofa. You feel scared that soon you will become completely bedridden if things keep on going this way. Your life is becoming increasingly abnormal with more of it spent in bed as you have no energy to do anything else.
12. Your Home Environment Is A Cluttered Mess – As you look around your home you realize it looks like a horrible mess. It hasn’t been cleaned properly for ages but, more than that there is clutter everywhere. The kitchen is full of dirty dishes and half-empty food containers and there’s a coating of dust over all the furniture. Dirty laundry has piled up, you’re running out of clean clothes to wear and the laundry basket is overflowing.
There are old newspapers, magazines, and garbage everywhere, and every surface is cluttered with ‘stuff’ everywhere. Your home used to be so orderly, you took pride in your organizational and housekeeping skills.
But now that you take a good look around, your home is in disorganized chaos reflecting the chores you haven’t managed to do due to your lack of mental and physical energy. Gazing around, you realize it’s pretty disgusting. You knew you were letting things slip as your energy disappeared. But how did it get this bad?
13. Your Brain Fog Is Getting Worse – This morning you can’t find your purse. Rushing to get breakfast ready, your mind is racing. How can you have lost your purse? Trying to frantically retrace yesterday’s steps you think about where you could have left it. Maybe it’s still in the car? You turn to get the milk from the fridge, open the door, and Bingo! There’s your purse, on the top shelf of the fridge. It’s been there all night so at least you didn’t lose it.
The only harm done seems to be that your lipstick is now a bit frozen and too solid to put on. But why on earth would you have put your purse in the fridge?
Oh well, all’s well that ends well, you go upstairs to get some documents you need for work and at the top of the stairs can’t remember what you came up for. Down you go again, then you remember…… the documents!
People at work are starting to notice you seem to be a bit forgetful and a couple of comments have been made about your lateness getting reports in on time. Actually, it’s starting to become a bit embarrassing, you used to be the one everyone could rely on.
14. You Are Unable To Exercise– Your weekly routine for years was always to exercise about 3 or 4 times each week. You didn’t go mad, just some cardio or weights and the odd class to break up the monotony, it’s always been a great way to keep your weight under control.
You’ve kept your exercise routine pretty steady for years and enjoy a good fitness level. So you know that motivation isn’t a problem for you.
But last time you did 20 minutes on the treadmill you spent 4 days in bed recovering. Always a regular exerciser, now it seems that even a gentle 10-minute walk in the park is too much for you. But you know if you push it beyond 10 minutes, you’ll end up in bed for days recovering.
15. You Seem To Be Suffering From Anxiety – Never normally an anxious type of person, you’ve noticed strange feelings surface that you realize could be symptoms of anxiety. That weird churning feeling in your stomach that you know is not indigestion.
Often you feel dizzy and light-headed, but sort of restless at the same time. The other day you couldn’t find a space to park the car and your heart started beating out of control and you felt as if you were going to pass out or vomit, or all three at the same time.
In situations, you can normally handle you now feel completely out of control. The slightest upset seems to trigger many of these weird symptoms and feelings.
16. Your Eating Habits Are Out Of Control – Having always been conscious of maintaining a healthy diet, why on earth are you craving french fries and sweets every single day? Come mid-afternoon the lure of all that fat and sugary wrapped goodness luring you from the vending machine becomes too hard to ignore.
Watching TV in the evening you’ve just eaten an entire container of ice cream on your own. Healthy salads, fresh lightly steamed vegetables, salmon, and free-range chicken have lost their appeal. All you want now is fatty oily pastries, deep-fried food, and chocolate.
17. Your Hair Starts Falling Out– People have always commented on your crowning glory, you’re gloriously shiny healthy looking lustrous hair. During your shower this morning the water stops draining away and on closer inspection, you find the reason.
No need to call the plumber, it’s just your fallen hair clogging the drain. As you start to dry your hair you notice lots of hair in the brush. Your once thick hair is thinning and the texture is wiry and it’s kind of frizzy too. Unfortunately, it can no longer be described as a crowning glory so thin and straggly has it become.
18. You Develop An Irritated Bladder– It seems you can no longer get a full night’s sleep as you are constantly awake with the need to pee. Not only that but when you pee it burns badly.
After checking with the doctor you find there is no infection, however, it seems you have developed an irritated bladder. Your stomach feels a little tender and you have the annoying need to go to the toilet several times a day. It’s not only annoying but makes many activities impossible. For example, going to see a movie is now completely out of the question as you’ll miss half the movie while you spend so much time in the toilet.
19. You Experience Balance Issues And Muscle Weakness – Realizing your normal exercise routine is out of the question you try some simple yoga. However, it seems that even the relatively simple tree pose is too much for you.
Normally your balance is pretty good, but doing tree pose you find it impossible to balance on one leg. When you try cobra pose you find your arm strength has deserted you too. You simply cannot push yourself up on your arms, they are too weak. All of the simple poses you normally do are also out of the question. Looks like you’ll need to start practicing restorative yogainstead.
20. You Try To Sit Down As Much As Possible – The thought of standing in the shower for even five minutes is too much for you. You’ve started taking a bath each morning instead.
You use a rolling stool to sit on while doing chores as much as possible. Cooking, ironing, and laundry tasks are all carried out whilst sitting. Shopping expeditions are now a thing of the past, it’s too difficult to stand in queues and walk around stores. Instead, you’ve started ordering your groceries online so that you no longer have to make a trip to the mall.
By taking note of new or worsening symptoms, and changes in your work and living environment you can recognize the signs your illness is giving you that it’s here to stay. It’s not going to disappear of its own accord. Now is the time to find a naturopath/ functional medicine practitioner experienced in treating chronic fatigue syndrome who can help you recover.
Fibromyalgia and Chronic Fatigue are often associated with toxic overload and therefore, finding ways to reduce the toxins in our bodies are crucial to good health. Dry Body Brushing is a great addition to your daily routine.
Many of us opt for a massage as this helps with our aches and pains. However, what the massage is actually doing is moving and draining lymphatic fluid, getting it to freely circulate around the body. Exercise also has the same effect. However, unless we are very lucky, daily massages are just not an option for most people and we may not be up for exercise every day. Dry Body Brushing is free, quick, and easy, taking just a few minutes every day.
Not only is the skin the largest organ of the body but it is really important for elimination and detoxification. The lymph is responsible for helping to remove toxins from the body and the skin accounts for the removal of about one-third of your body’s toxins.
Often when our body is toxic, this in most cases is reflected on our skin in varying degrees ranging from dry and lackluster to oily and acne. Whilst nutrients are delivered to other areas of the body first before the skin, it is the skin that is the first organ to show signs of dis-ease. Toxic overload can also leave us lacking in energy and suffering from digestive issues.
• Increasing circulation which in some cases has improved cellulite. • Sheds dry skin cells which encourage new cell renewal which ultimately results in brighter skin. • Releases toxins through the improvement of lymphatic drainage. • Stimulates the nerve endings which just feels great. • Helps to eliminate clogged pores and therefore assists absorption of nutrients. • Helps digestion. • Tone the muscles.
• For best results, use a natural bristle brush. • Always brush on dry skin before a shower. • Work in circular, brisk, upward motions always towards the heart and in the direction of the lymphatic flow. • Start at the ankles and work up. • On the back work from the neck, down towards the lower back. • Use circular counter clock-wise strokes on the stomach • Lightly brush over the breasts • Ensure that you never brush over inflamed, sunburnt skin or skin cancer. • Always shower after body brushing to wash away the sloughed-off skin cells. Follow up with a moisturizer.
Annet King, Director of Global Education for The International Dermal Institute says that “body brushing helps to remove stagnant toxins that break down connective tissue leading to the cellulite, however, ultimately there is no conclusive evidence but as a quick fix to plumping the skin, this may be one of the short-lived results of body brushing”.
As with adopting any new regime, it will take time to see results and it is recommended daily brushing for a minimum of 30 days to experience some changes. For a more thorough lymphatic cleansing, you should brush daily for 3 months to see the benefits.
I have never been a huge visitor to Fibromyalgia support forums. However, it has been “eye-opening to say the least to see how opinions have been divided.
In one camp you have those, like me who think that this is great for raising awareness.
People are finally starting to ask questions about this relatively unknown and misunderstood condition. Facebook went into overdrive. Instagram was buzzing and Twitter, well just tweeted. Daytime TV interviewed doctors who gave the low down on Fibromyalgia. One of our regular presenters got a crash course in pronouncing the word as well as learning what the symptoms are. In some respects, it felt better late than never. All of sudden, we are validated. Just sad that it has taken so long and a celebrity suffering to bring Fibromyalgia out in the open. Good on Gaga!!
Sadly, on the other side of the fence, there are those sufferers who are playing the “my Fibromyalgia is worse than yours” game. They have declared open season on Lady Gaga.
They are questioning her motives for going public. Doubting that she could even have the condition given her long and energetic live performances. There have been those that have suggested that she would be better using her wealth by contributing to research. They deem this preferable as opposed to sharing her story. And believe it or not, there are some who are “whining” about her being in hospital. If she can “rest in the hospital, why can’t I?” Really???
I am sure that she can think of better places to rest and recuperate without being admitted to hospital.
The reality of this condition is that nobody is immune, the pain has no regard for celebrity status. Because Fibromyalgia is so different and unique to each individual it is difficult to judge one set of symptoms against another. Fibromyalgia can prove to be more debilitating for some than others. We know that it tends to go hand in hand with so many other conditions such as Chronic Fatigue or Irritable Bowel Syndrome.
For those of us with Fibromyalgia and chronic pain, it is important that we extend compassion not just to fellow sufferers but also towards ourselves.
It is imperative that we don’t turn our pain into some sort of competition by judging one another as to who can do what. We should be celebrating our successes and commiserating when the going gets tough. Not putting each other down because somebody had a good day!
I have, in some small part, been on the receiving of those who have doubted the severity of my condition. I have been slated for holding down a full-time job and for not taking medication. All good reasons apparently to question my diagnosis by other Fibromyalgia sufferers.
Therefore, I have to say that I do feel for Lady Gaga. Although never a fan, I admire her honesty and her admission that shows she isn’t the superhuman everybody thought she was. By coming out and talking of her struggle with pain, she has made herself vulnerable to the doubters and naysayers. I am hoping that she also becomes an ambassador and a voice for those who genuinely suffer in silence.
She has the same frailties and struggles as the rest of us who suffer with this condition.
And, yes truth be told, she has more money than most. Without a doubt, she will have access to some of the best doctors and healthcare. However, at the end of the day, her pain and fatigue will be as soul-destroying and debilitating as it is for the rest of us.
As we all do, she will have good and bad days. Sadly, she will have flares and periods of stability. She is now after all a Fibromyalgia Warrior battling with the rest of us. Therefore, she is as deserving of our support as any other brave soul battling chronic pain.
Whatever your thoughts are on the performer, she has brought the word Fibromyalgia into the public domain and that can only be a good thing. I for one, wish her all the love and luck in the world.
This is a great opportunity now to capitalize on her story and build momentum by telling ourstories. If you are feeling brave, why not get in touch with your local press and tell them about your Fibro journey. Post on your Facebook page, start up your own community or share your Fibro days on Instagram.
It is certainly a topical subject at the moment and ultimately, this can only be a good thing in educating people about our condition. It is up to us to get our message out there and highlight how many people are actually battling this condition day in day out, out of the headlines, and away from the cameras.
Be brave, be bold and tell your story – no meaty outfits required!!
Since I began Fibro Warrior, I have often been asked how do I manage to focus on the positives whilst battling Fibromyalgia? The answer to that is what are the alternatives? I guess I have two choices but only one is worth pursuing.
The truth is that there is certainly nothing positive about having a chronic condition. But given that there is currently no cure for Fibromyalgia, then I feel that I must change and adapt. So read on to see how I do just that….
When I was diagnosed in 2000, I had already been struggling with Fibromyalgia for 11 years. I didn’t know what was wrong with me and I think in reality those years were the darkest. They were scary in the sense that I feared for my sanity. I knew all was not well but the doctors could find nothing wrong.
It was in the early years that this condition robbed me of so much.
It took my energy, my health, my confidence, and my self-esteem. More tragically, it robbed me of the early years with my baby son, and later in 1997 it put paid to my first marriage. Whatever this was, it was beating me and winning!
Getting my diagnosis was a massive relief and once I got my head around the fact that it was incurable, I was ready to fight. I made the decision there and then, that I was not going to rely on medication and from then on, things started to change.
I had two choices, roll over and let Fibromyalgia throw all that it had at me. Become its victim and allow it to keep robbing me until I had nothing left or I couldn’t fight anymore!!
I didn’t have an army or stash of secret weapons…yet! But, I did have a renewed will to get better. I didn’t know how I was going to do it but I thought I knew what I was up against. It was a start, the battle lines were drawn and I could start and fightback.
Over the years, I read everything I could get my hands on about the condition. I saw a nutritionist, spent a fortune on alternative therapies and acupuncture. Joined a gym and quit, joined another, and quit again. I took supplements, drank Aloe Vera. I used crystals and aromatherapy oils looking for one that one miracle cure. You have been there, right? You know what I am talking about.
Well, I am sure you discovered the same as me. There is no miracle cure. One Nil to Fibromyalgia
As I neared my 50th birthday, there came the realization that with this anniversary there would be another “milestone.” I would have officially battled Fibromyalgia for over half of my life. In all likelihood, I would have to carry on the fight for another 25 years. I knew that there had to be a way of making sure that the Fibro didn’t swallow me up completely. I finally knew that the answer wasn’t going to come in some wonder drug or therapy. It was going to come from within me!!
Yep, Fibromyalgia, I won this one!! I got the answer you tried to keep from me for 25 years – one all
It was almost a revelation that my “healing” as much as it could be, was going to start and end with me. No doctors, no therapists, no medication – just me. I truly believed that I had all the weapons I needed right here in my body. It was just a matter of deciding what I had and how I was going to use it.
Firstly, I knew I needed exercise. I had tried all the usual gym stuff, swimming and walking. Invariably, these made me feel worse and induced a flare. I knew that I had to find something fairly gentle on my body but it had to be effective. So began my journey to the Yoga mat. It was and still is amazing.
Yoga meets you where you are and no two sessions are the same. Positions are adapted to accommodate my Fibro body depending on what I can manage on any given day. I also read up on rebounding (bouncing on a trampoline) and learned that this was beneficial for Fibromyalgia sufferers. So, I bought my rebounder and gradually increased my bounce time from an initial tough 5 minutes to an invigorating and enjoyable half an hour.
I had, over the years dabbled with meditation. This had been born out of my love of all things Tibetan and His Holiness, The Dalai Lama. Therefore it made sense to make a real effort to include meditation in my yoga practice. In addition, I spend the first 10 minutes of every day meditating outside, no matter the weather. (An outdoor gazebo is a triumph).
Meditation works!! It takes me to a place where my breath dominates and my thoughts, feelings, and pain are relegated for a short time while I focus on ME. My personal mantra is “It is all about me, it’s all about now”.
My early morning meditation and yoga sessions set me up for the day. I believe that this sends a message to my Fibromyalgia that I am up, out of bed, and ready to take on my day – strong and determined.
So, that is my body & mind sorted – what else could I arm myself with?
I have always been a strong believer that given the right conditions, the body can heal itself. Never one to embrace a medication, I always know that a headache will eventually go away. A cold or flu will run its course and then disappear without a trace. A cut or a bruise will in time, heal as if by magic. So, my next quest was to explore what my body needed to fight Fibromyalgia every damn day.
I personally believed that the answer would lie in my diet. So, I decided to go right back to the drawing board and carry out a cleanse. I knew that this would give me the opportunity of cutting out large amounts of food, whilst giving my digestion a break. This would then put me in the position of slowly introducing certain foods again and then judging how they impacted my body.
I opted for a 12-day program that required me to cut out all processed food, meat, caffeine, dairy, and sugar. It was tough for a couple of days but then the magic started. I woke in the mornings with no aches and pains (seriously). My energy increased and the constant fatigue which plagued my days was gone. People started to comment on how well I looked and I was even accused of getting Botox because my skin glowed.
I felt so good that at the end of the 12 days, I did another 12. I made the decision then to permanently cut out all caffeine and processed foods from my diet. Also, I opted to leave out the meat and just eat fish.
As time went on, I wanted to learn more about how I could further support my body in its war with Fibromyalgia but I also wanted to pass on what I had learned already. In order to support other sufferers, I decided to sign up to become and Health & Wellness Coach. I then went on to study raw food nutrition. It was learning about what my body needed to function at its optimal. I was giving it a fighting chance against Fibromyalgia.
Now, I need to be clear here and say that I would not consider myself healed. There are times when the pain is too much to bear, the fatigue overwhelming but compared to how I felt in 1989 there is no comparison. I have learned that with the right foods and being gentle with me when I need it, these flares pass and I live to fight another day!
Fibromyalgia may win many of the battles but I am determined it will never, ever win the war!!
Today, I stepped back into a place I haven’t visited in a long time……One year to the day to be exact since I last ventured anywhere close. It wasn’t intentional or deliberate to visit on this day, it just kind of happened. It felt like taking a trip down memory lane. I was curious and I suppose I wanted to see if everything was still the same. Truth be told, it was and it wasn’t.
The surroundings were familiar enough, nothing much had changed but in a sense, everything had changed. I had changed. That seemed to make all the difference.
My last post here was on 3rd October 2018. 12 whole months since I had reached out to my fellow warriors with love and support. 365 days, that I haven’t had the confidence to write from the heart and reach out. 52 weeks of being in the wilderness and feeling disconnected from everything and everyone.
The truth is that I was struggling so bad myself that I felt that I had nothing to give you. How could I make things fantastic for those who came to get support and guidance? I couldn’t even help myself. So, I retreated. I let life happen to me whilst all the time trying desperately to distance myself from the mental and physical pain I was battling against.
One of my coping strategies, the love of writing fell by the wayside, and once that happened my outlet for expression went too. I bottled everything up inside, giving the appearance all was well in my world, whilst the reality was far from good.
All of my words of wisdom had dried up and I was just another chronic pain warrior, battling through each day with nothing new to share. No advice to give and no words of comfort.
As I logged on today, I read my last blog post and replayed over and over the video clip that I had attached to the post. It was then and still is today an incredibly powerful version of “This Is Me” from the film The Greatest Showman. As I listened, the words
“Another round of bullets hits my skin Well, fire away ’cause today, I won’t let the shame sink in.”
resonated so deep within me that I could have easily sunk to the ground with emotion. I had let shame get the better of me. I was ashamed to really share the struggle…..if I wasn’t Fibro Fantastic then I thought I had nothing anybody would want to hear.
But, recently I have been working so hard on authenticity.
Coming to terms with who I am, who I always was, and who I have become. Acknowledging that if people can’t deal with the real me, then there is no point in having them in my life. I wanted to send the imposter away and take the real Tracey by the hand and bring her out of hiding.
As I played the video clip Keala Settle’s voice wracked with emotion was like a light going on. It felt as though now, this was my anthem. My mantra. My shout out to the world that I make no apologies. – This is me!!
I am brave, I am bruised I am who I’m meant to be, this is me Look out ’cause here I come And I’m marching on to the beat I drum I’m not scared to be seen I make no apologies, this is me
To share my words and feelings from my heart feels like a huge release. I need an outlet for my journey, the one that has both physical and mental pain as passengers. It has been here all along – my blog, my corner of the virtual world. A place where people stand together, as members of an invisible club, where only we understand the rules.
Going forward, I don’t know the direction Fibro Fantastic Wellness Coaching will take, but I do know this will be as much about me as it is about you. I can’t help you if I can’t help me. So, for now, I feel that the blog will take on more of a journey feel. Letting you into my new world of struggle, despair, the battles, the highs, and the lows.
I am still Tracey the Wellness Coach, but I am also Tracey the fighter who is vulnerable and scared of the future, just like the rest of you. But I am home and for now, I will take that!
There is a NEW cure for fibromyalgia plastered on FaceBook! Yep. They have done it! AGAIN! Another cure for us fibro sufferers, for crying out loud! It is about time!!! (Really?) Well, let’s talk about this…
Ok. There is a blood test called the FM/a to diagnose fibromyalgia. This is real. Your insurance, whatever that may be, will cover the cost of this blood test.
What does the FM/a test for? (Researcher-speak) This is a multi-biomarker-based test that analyzes your immune systems’ white blood cells’ chemokine and cytokine patterns. People with fibro have an irregular pattern regarding these proteins.
What does the FM/a test for?(Kim-speak) This test measures the proteins in your body that increase when you are ill. These proteins increase your white blood cell count considerably to fight the likes of the flu, mono, infection, etc… These measurements should prove to be erratic if you have fibromyalgia.
(Kim-speak) Do not rule out being tested for the FM/a test, just don’t be firstin case it’s a deciding factor in the treatment you are allowed to receive! (This is not a one-size-fits-all illness!)
The result in this proposed theory will be a cure for the incurable… AND (drumroll!) they have the ONLY cure!
Just what is this cure? It is the TB vaccine. Period. Will this work? I haven’t researched one case where it has worked. I have not studied one case where it has caused any harm. Go ahead and research the TB vaccine and see if you think it may hold promise for your ‘type’ of fibromyalgia. Go ahead and get the TB vaccine if you think it might work. Just ask your doctor to administer the TB vaccine. The cost is low, the vaccine is available. There is no need for such a cryptic message of a wonderous ‘cure!’I trust YOU to make the best decision for YOU!
Then the pain oozed into my jaw. This is when I learned about temporomandibular joint disorder (TMJ disorder). Persistent headaches became the norm. Thankfully, I have had only one crazy migraine that brought me to the hospital. Migraines are not cool, bro.
Stress shoved its way into depression and then full-blown anxiety.
Pain oozed into my lower back and hips. Cue for the frustrating adventure of going to specialist after specialist–none of whom could find the answer to my invisible aches and pains.
After a few weeks of digestion issues and my gastroenterologist reported that stress is impacting my digestion. Thankfully, my digestion issues did not persist enough for a diagnosis to be stamped on my stomach.
Restless leg syndrome. Aches and pains. Aches and pains. Falling asleep became an arduous undertaking. And it still is! Soreness and exhaustion travel to my wrists and fingers.
It’s not rheumatoid arthritis. It’s not Lupus. No diagnosis was yet discovered. My doctor printed out a detailed sheet of Hypochondria for me from Chronic Illness. And off he went to his next patient. No bedside manner.
Alone, confused, misunderstood, and in constant pain. I took a break from asking questions. And I saved a lot of Metrocard money from traveling to these “specialists.” Praying was different. My body and its pains were yelling for attention. “Heal me!” My mother, my aunts, uncles, my family in the Dominican Republic were all earnestly praying for my healing.
“Tenga fe. Dios te vas a sanar.” (Have faith. God will heal you.)
I didn’t have any faith. Before my aches and pains, I believed that I wasn’t good for anything. I was convinced that the domino effect of my aches and pains was God’s funny way of saying, “Since you don’t think you are good for anything, I will make sure you are no good for anything.”
I am managing with yoga, analgesic creams, TENS, and a few other devices and techniques that I am grateful for, but it’s a daily battle. My body, mind, and soul experience Jesus crucified as I re-offer my prayers, works, joys, and sufferings to his Sacred Heart.
