At Least, it isn’t Cancer.

The following post appeared at reachwhite.com; however (and it’s a BIG however) I have taken some liberties. It was originally about Lyme disease but I empathised completely with the author, from my fibromyalgia-racked perspective. So I am sure that some of you feel the same way (not all of you, I know that!). Basically, this is a re-blog but I have replaced Lyme Disease with Fibromyalgia and ME/CFS.

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Here goes:

I probably won’t make a lot of friends with this post — but I hope I don’t make any enemies either. I hope that what I’m not saying is as clear as what I am saying.

I’m not saying that Fibromyalgia and/or ME/CFS is worse than Cancer. I’m not trying to make any comparison between the two diseases…as diseases. Both Cancer and Fibromyalgia and/or ME/CFS are devastating. Both wreck families. Both make patients unable: unable to stay awake, unable to sleep, unable to work. Both impact on functional status and well-being and reduce quality of life.

But there are some notable differences — and those differences are all in how other people respond to the illness. How other people perceive the sick person, and the sick person’s family.

If you have Cancer, or another sickness from the established disease Canon: the register of approved diseases (Diabetes or AIDS or Parkinson’s or Multiple Sclerosis or Cancer), people will listen.

If you have Cancer, your health insurance will probably cover your treatment, at least partially…whatever you want that treatment to be.

If you have Fibromyalgia and/or ME/CFS, you will get letters from your health insurance company saying that they can’t cover any of your treatment because their guidelines don’t recognize chronic Fibromyalgia and/or ME/CFS.

If you have Cancer, people will establish foundations, and run 5k’s, and pass acts in Congress and wear ribbons and buy bracelets and pink things to raise funds for research — to the tune of billions a year.

If you have Fibromyalgia and/or ME/CFS, no one will raise funds for research, or even believe that you have a disease. But you’ll look around one Saturday and realize your 5-year-old daughter is missing…and you’ll find her down the street, peddling her artwork and her trinkets door-to-door: to raise money for the family.

If you have Fibromyalgia and/or ME/CFS, you will go broke…while you’re going for broke.

If you have Cancer, and you’re a kid, the Make-A-Wish Foundation will arrange for you to meet your favorite celebrity or go to Disney World.  And Hollywood will make movie, after movie, after movie about your story.

If you have Fibromyalgia and/or ME/CFS, and you’re a kid, your gym teacher will tell you that you have to run the mile unless you can get a note from your doctor. Your teachers will fail you for missing too many days of school. And people will tell your parents that you’re just going through a phase.

If your dad or your mom has Cancer, people will organize workshops and therapy groups for you. People will tell you that it’s OK to express your feelings.

If your dad has Fibromyalgia and/or ME/CFS, people will tell you that he doesn’t love you. Let me repeat that and assure you that I do not exaggerate. If you’re a kid, and your dad has Fibromyalgia and/or ME/CFS, well-meaning people will tell you that, if your daddy loved you more, he would try to get better.

If your husband has Cancer, ladies from your church will show up at your door with casseroles.

If your husband has Fibromyalgia and/or ME/CFS, ladies from your church, even people in your own family, will tell you to leave him; or call you an enabler. But you’ll be too busy helping him crawl from his bed to the couch, or steadying him as he stands so that he can use the bathroom, or helping him finish his work so that your kids can eat to wonder what, exactly, you’re enabling him to do.

If people ask you: “Is your dad sick?” And you say: “He has Cancer.” Their eyes will well up. They’ll squeeze your hand and offer to bring you dinner, put you on their prayer list. They’ll say: “If there’s anything we can do…” And they’ll mean it.

If people ask you: “Is your dad sick?” And you say: “He has chronic Fibromyalgia and/or ME/CFS.” They will look confused for a moment. They’ll say: “What?” And then they’ll shake their heads, smile, and say:

“Well…at least it isn’t Cancer.”

Related articles:

Share the (Thunder) Clap!

May12thMay 12th – International ME/CFS & FM Awareness Day is running this year’s Thunder Clap – an initiative in which I would be honoured if you chose to get involved.

Firstly, this is NOT a Facebook page or website specific project – so I am hoping that this will be supported by ALL of us!

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number (and we have so the message will get out there whatever happens!), Thunderclap will share the same message on EVERY supporters’ Twitter, Tumblr and/or Facebook page at the same time! You and others will share the same message together, spreading an idea through Facebook, Tumblr and Twitter that cannot be ignored!

For example:

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What is THIS Thunderclap?

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This is our day to raise awareness around the world. This year marks the 22nd anniversary. We are real people, with a real physical illness and we need to raise awareness. Awareness will ultimately translate to more funding, research and a solution.

The message will be published on every supporters’ Facebook page, Tumblr and/or Twitter feed WHEN we reach the goal number.

What Can I do to Help?

1. To support the THUNDERCLAP personally, click the link then you can:

  • add more social reach with Twitter, Tumblr or Facebook; and/or
  • promote the THUNDERCLAP by sharing or tweeting.

2. You can promote it on your Facebook page

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3. You can write a blog post to let all your followers know about the project.

Our goal: to no longer be ignored! Just think…we could be trending in May!

I really hope you jump on board…and I hope this campaign can bring some major awareness!

It is the dream of our patient community to erase the stigma and finally be taken seriously by friends, family, researchers, government and people in our local communities. May 12th Awareness Day is a chance for the millions of patients worldwide suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) to be seen and heard!

These illnesses are real; the people are real; and they need help NOW!

With awareness, will come action! Our community is desperately in need of treatment facilities and funding is required to support research and our scientists.  A successful May 12th will bring many rewards for years to come. These activities will not only benefit us today, but they will be an investment in our future.

To quote Helen Keller – “Alone we can do so little; together we can do so much.”

 

Please share, tweet, re-blog, etc. Let’s get as much coverage as possible!

The Bitch is Back (literally)

It’s 6.10am and I am amazed by how much pain I am in.

work_625175_7_flat,550x550,075,f_purple-painMainly, I am amazed because I forget, in between flares, about how bad these can actually be; how much we actually put up with. I don’t normally write when I feel like this because I really can’t be bothered…and, then when they’re over, it never feels like it could have been THAT bad…WRONG!

So here goes (from toes upwards): both my little toes feel like they are being squished by my shoes (like they are every time I wear any time I wear any kind of shoes) except I haven’t worn any shoes in 3 days!

Purple-Stiletto-Heels (1)The balls of my feet feel like they have spent at least 10 hours in a pair of stilettos partying – once again, I can’t remember the last time I wore a pair of heels. You know those Dr Scholl sandals with the funny nodules – those nodules are growing on the inside of my soles. And there’s a spot where I had a papilloma which is now growing up the inside of my calf muscle, despite being removed when I was twelve. Sounds so bizarre, right? Welcome to my central nervous system!

Every muscle in my calves has cramped up; and I have used every single technique that the physio at rehab taught me, applied every cream and ointment from my box of tricks…everything!

b27293cc-66ff-4474-89ba-f809cfb092ad-tmpMoving upwards (and you may want to miss this paragraph if you don’t like to share too much information): 10 days ago, I suffered an anal fissure due to constipation – yeah! fabulous! Since then, it has felt like my insides have been cramped up completely. I have been taking turns at both constipation and diarrhoea while having a very sore ass the entire time! Needless to say, I am too scared to leave the house, in case my insides should just decide to drop out! Hey! It could happen!

Now the wonderful ointment that the doctor gives you for this lovely and embarrassing condition has the possible (and very probable for us) side effects of headaches and dizziness. Ta Da! I’ve continued with non-stop headaches and dizziness.

greenhealth_07_pmsLet’s move to another orifice. My period is due tomorrow so during all of this I have been pre-menstrual. Aren’t you guys lucky that you don’t have to be anywhere near me at the moment!

You’ll be happy to know that my chest, shoulders and neck seem to fine right now so we can miss those…otherwise this could be one really long bitching session.

great make upThe pain in my cheek and jaw bones (I’m told it is a continuation of migraine pain) is not reacting to anti-inflammatories, or any other pain medication – bring on the Botox injections (and the possible addition of Botox to the PBS in March). And I have had a giant case of face leakage for the last 3 days – and no wonder when you read all of this crap, really.

One can’t help but feel sorry for oneself in this state.

Maybe a sleeping tablet will help and I’ll wake up feeling better?

How to Understand Someone With Chronic Pain

In hopeful anticipation of informing YOU, a person who wants to understand: these are some things that can help YOU to understand, and help, people who suffer from often debilitating, chronic pain:

Remember: chronic pain sufferers (CPS) have already attempted numerous alternative therapies and know what therapies have worked or not worked for them.

1. Remember that being sick does not mean that the sufferer is no longer a human being.

1A CPS may spend the majority of their day in considerable pain. If YOU visit or live with a CPS, the CPS may be unable to enjoy the things they used to enjoy. The CPS remains aware, and desires to do what they used to perform. The CPS feels as if they are stuck inside a body over which they have little or no control. They still want to enjoy work, family, friends and leisure activities; however, pain keeps that enjoyment out of reach.

2. Learn the code.

2A CPS will often speak differently from people free of constant pain. Do not assume the CPS is not experiencing pain when they say that they are fine. The CPS attempts to hide the pain due to lack of understanding in others. Accept that words may be inadequate to describe how the sufferer is feeling. Recall a time when YOU experienced pain, then multiply the intensity and attempt to imagine that pain present twenty-four hours a day, every day, without relief. It’s hard to find the words for that sort of pain.

3. Recognize the difference between “happiness” and “healthy”.

3Remember the last time YOU had the flu, YOU probably felt miserable. A CPS has experienced pain from 6 months to many years. Pain has caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they feel.

Respect that the person who is in pain is trying their best. When the CPS says they are in pain – they are! They are merely coping; sounding happy and trying to look normal.

3aLook for signs of pain: grimacing, restlessness, irritability, mood swings, wringing of hands, moaning, sleep disturbance, teeth grinding, poor concentration, decreased activity, and perhaps even writing down suicidal thoughts or language.

4. Listen.

4The previous two steps made it clear that a CPS can speak in code or make light of their pain than is the reality. The next best thing that YOU can do is to listen to them properly, and to make it clear that YOU both want to hear what they have to say and that YOU really have heard it. Use YOUr listening skills to decode what they’re hiding or minimizing.

5. Understand and respect the CPS’s physical limitations.

Being able to stand up* for ten minutes doesn’t necessarily mean that the CPS can stand up for twenty minutes, or an hour, or give YOU a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn’t imply that they will be able to do the same today. With a lot of diseases, a person may exhibit obvious signs of immobility, such as paralysis, or total immobilization due to weakness, etc. With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up and each day has to be taken as it comes. In many cases, they don’t know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

* Insert “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, to this step, as the curtailment on a sufferer’s ability to be responsive applies to everything that you’d expect a person in good health to be able to do. That’s what chronic pain does to its sufferers.

6. Leave your “pep talk” mode for your kids and your gym buddies.

6Realizing that chronic pain is variable, keep in mind that a pep talk can be aggravating and demoralizing for the CPS. As already noted, it’s quite possible (and for many, it’s common) that one day they’re able to walk to the park and back, while the next day they’ll have trouble getting to the next room. Therefore, it’s vital that YOU don’t fall into the trap of saying: “But you did it before!” or “Oh, come on, I know you can do this!” If YOU want them to do something, then ask if they can and respect their answer.

Get over the need to give platitudes about the value of exercising and fresh air. For a CPS, “getting out and doing things” does not make the pain vanish and can often exacerbate the problems. Bear in mind that YOU don’t know what they go through or how they suffer in their own private time. Telling them that they need to exercise, or do some things to “get their mind off of it”, may frustrate them to tears, and is not correct advice, especially if YOU’re not medically trained and haven’t got a clue. If they were capable of doing some things any or all of the time, they would.

Remember that CPS are constantly working with doctors and striving to improve and do the right things for their illness. Another statement that hurts is, “you just need to push yourself more, try harder”. Obviously, chronic pain can affect the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain; not to mention the recovery time, which can be intense. YOU can’t always read it on their face or in their body language. Also, chronic pain may cause secondary depression (wouldn’t YOU get depressed and down if YOU were hurting constantly for months or years?), but it is not created by depression.

7. Never use throwaway lines.

7Assuming YOU know best by making such statements as “Ah well, that’s life, you’ll just have to deal with it”, or “you’ll get over it eventually. Until then, you’ll just have to do your best”, or worst of all, “Well, you look well enough”, etc., are lines that might make YOU feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope. Psychologist Mark Grant suggests that YOU should throw lifelines rather than throwaway lines.

8. Check your own patience.

If YOU’re impatient and want them to “just get on with it”, YOU risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.

A CPS may need to cancel a previous commitment at the last-minute. If this happens, please do not take it personally. If YOU are able, please try to always remember how very lucky YOU are, to be physically able to do all of the things that YOU can do.

Be very understanding if the CPS says they have to sit down, lie down, stay in bed, or take these pills right now. It probably means that they have no choice but to do it right now, and it can’t be put off or forgotten just because they happen to be somewhere, or they’re right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

9. Be sensitive when suggesting medicines or alternative treatments.

9Prescription drugs, over-the-counter medicines and alternative therapies can have side effects and unintended consequences. Some may not appreciate suggestions, and it’s not because they don’t want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven’t worked carry the emotional pain of failure, which in and of itself can make the person feel even lower.

On the other hand, never be afraid to ask them about how satisfied they are with their treatment. Mark Grant says that it is important to ask helpful questions about whether the chronic sufferer thinks their treatment is satisfactory or if they think their pain is bearable. He suggests that people rarely ask these open-ended “helpful questions” that would help the CPS to open up and really talk. Of course, if there were something that cured, or even helped people with a particular form of chronic pain, then they should be made aware of it. There is worldwide networking (both on and off the Internet) between people with chronic pain. Those can be good resources. Be sensitive in how YOU bring it up.

10. Don’t be put off if the CPS seems touchy.

If that’s the appearance, it’s probably because they are. It’s not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless YOU have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.

11. Be helpful.

11The CPS depends a great deal on people who are not sick to support them at home or visit them when they’re too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. YOU can be their link to the “normalcy” of life. YOU can help them keep in touch with the parts of life that they miss and desperately want to undertake again.

12. Balance your career responsibilities. If YOU are living with a CPS or supporting such a person on a regular basis, YOU need to maintain balance in your life. If YOU don’t take care of your own needs, health, and work-life balance, being around the CPS can bring YOU down even though YOU’re probably trying hard not to be. Avoid suffering from carer burn-out by getting other people to help, taking time out, and curtailing your guilt trips. Care for this person as much as YOU’re able but also care for YOURSELF.

Somedays by Lisa Fulham

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Somedays it’s easier

To believe the bad stuff

The cruel words

The harsh tones

 

Somedays the darkness is all I see

Light is but a distant memory

Hope only comes

In the form of hopelessness

 

Somedays my loudest screams

Are torn from me in silence

Words loose meaning

So I crawl into myself

 

Somedays my only option is to hide

Hide all the hurt I’m feeling inside

How can I expect others to understand

When I don’t understand myself

 

Somedays my inner turmoil

Brings me to my edge

The gravity of depression

Pulls me into a downward spiral

 

But somedays

The pain feels lessened

The voice of sorrow seems quieter

The darkness isn’t such a void

And my words begin to have meaning once more

 

Somedays I see a glimmer

Of who I used to be

I hear the echo of laughter

From times gone by

My smile tries to curl

The edge of my mouth

 

Somedays I know I need to talk

Find the root

Of where the darkness came from

Find the path

That leads to the light

 

Somedays I hold out my hand

And say the word that fears me most

Help

 

Those days I feel i’m at my weakest

 

These days I feel I’m the strongest I have ever been

The Ten Basic Rules to Dating with #Chronic Illness

Re-blogged from letsfeelbetter.com

The Ten Basic Rules to Dating with Chronic Illness

1. DO: Use Technology to Bypass First Date Anxiety 

23/F/Bleeding From My Eyeballs/ Boca Raton, FL.

23/F/Bleeding From My Eyeballs/ Boca Raton, FL.

My sister uses OkCupid so that men know she’s a 5’2 nudist with a penchant for folk songs. If men who are total assholes about nudism and folk songs see her profile proclaiming this both so boldly and so clearly: they don’t message her. Or they message her things like “PUT ON SOME CLOTHES, YOU HOMELESS HEATHEN” or “CAT STEVENS CAN SUCK IT, YOU HIPPIE.”

You may want to try a similar strategy. Whether you’re a profile on a dating site, or you’re chatting up a guy/girl on Facebook–make sure to drop the bomb before the first date. If they don’t want to go out with you after learning you have Crohn’s, Lupus, whatever–then that’s that. What’s my momma’s favorite word? NEXT!

Why is it good to break the news online or even over the phone? You have to be understanding of people when it comes to your chronic disease. Understand that their first reaction probably will be “what the fuck?” So allow them the courtesy of saying it (to themselves) in the privacy of their own bedroom while staring at their laptop. Give them a minute or two to process. Feel comforted in the fact that you can’t see their hands flittering over the keyboard trying to come up with a supportive/appropriate/charming response. And let them have the ability to untangle this information before you sit down to your first date. Hopefully, by this time they’ll have let it settle in their mind a bit and will be able to ask you some appropriate questions about how your disease affects your life.

2. DON’T: Be a Victim

“And then the doctor said I’d never be able to eat ice cream again!”

“And then the doctor said I’d never be able to eat ice cream again!”

The only thing more awkward than meeting your ex on a blind date-is having someone tell you something on a first date like “I have ass cancer,” and then having them STARE at you while a single, silent tear slips down their cheek.

Don’t be that girl. (or guy.)

People are going to follow your lead when it comes to the state of your disease. You’re frustrated about it. They’re frustrated about it. You’re sad about it–they’re sad about it. You’re cool about it? They’ll be cool about it. People can sense your uneasiness about your disease. If you haven’t come to terms with it yet and are still in a phase of mourning your old life–you probably aren’t ready to date anyway.You’ve got to love yourself–with or without the disease, if you’re going to expect someone new in your life to do the same.

Lead by example, and don’t walk around with a chip on your shoulder that you leave in plain view. I’m not saying you have to hug your fibromyalgia lovingly in your arms every night, but you at least have to be able to get through a flare in public without openly weeping.

3. DO: Highlight Your Best Assets

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Even in your Grand-dad’s clothes.

You’re still going to be just about as self-conscious as any other person is on a first date, so remember to play up your best assets. Maybe you’ve packed on a few prednisone pounds–it’s a great time to pull out the tight skirts to show that you no longer have a white-girl butt. Maybe you’ve got circles under your eyes so black you look like you just came from a football game–time to show your date just how sexy you can look in sunglasses.

4. DON’T: TMI

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K. Thnx.

The details of your sensitive stomach. The current color of your snot. Your barely-healed laparoscopy scars. Save it for the honeymoon, kids.

5. DON’T: Lay Down the Law

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Yes, you need someone who won’t play games. You need someone who is going to be there for you ALL the time. You need someone reliable. You need someone understanding. You need, you need, you need–but slamming your fist down on the table every time you decree a new amendment on how you will be treated as a partner is not going to win you any suitors.

So take a step back. Remember that relationships are a two way street and you’ve got be willing to put out just as much as you need to take in. So why not start off this date making a mental list of how you’re going to improve their life? Partners of those with chronic illnesses are probably the closest things to super heroes. They put up with it all and know they won’t ever get as much PHYSICAL effort in return. But that doesn’t mean you can’t put in effort elsewhere. There are millions of things you can do for your partner–from helping them have better relationships with their family and friends, to teaching them about having career goals or handling money and investing, to being a solid parenting partner or emotional caregiver. You’re not the only one with problems, so start looking for places where you can apply yourself as the solution.

6. DON’T: Be a Hero

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It’s just a little blood…from my eyeballs. I’m good, let’s eat.

Rock climbing? Extreme roller coaster riding? Hot dog eating contests? These might not be the best first date activities for you if you have a chronic illness. You will probably fuck yourself up, big time. You will probably end the night in excruciating pain. You will probably end up puking in the back seat of his car.

Don’t pretend like you’re cool, and then turn around and dry heave into your handbag (I have mastered this by the way.) Don’t agree to go to a rock concert when you have a migraine and don’t agree to eat hibachi when you’re on an all-liquid diet. No good will come of this. Better to out yourself and your condition early and avoid the consequences. You can’t pretend forever–and Jesus, why would you want to???

7. DO: Laugh About It

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Because really–it is kind of funny. I mean whoever heard of someone sneaking in a stash of immodium in their bra to the prom? There are so many instances of hilarity when it comes to chronic illness–and if you don’t believe me, this is clearly the first post on this blog that you’ve read!

Take it from Numero Uno Klutz, Jennifer Laurence–fall on your ass and cry about it, you’ll lose the Oscar. Fall on your ass and laugh about it–you’ll be America’s Sweet Heart.

8. DON’T: Be Afraid of Rejection

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Because if you think you won’t need to be brave after the first date: you’re wrong. Relationships require all kinds of bravery. From braving that first kiss to braving the first argument. So be brave and remember that you (hopefully) don’t live in Antartica where there are only five men and you have to share them with all the other women in the tribe. If someone doesn’t want to be with you, there will be someone else. And better to be happy, searching for the right one–than miserable and feeling worse about yourself with the wrong one.

9. DO: Learn to Adapt and Be Okay With It

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Are you going to bail sometimes? Yes. Will you spend three hours on your hair then realize you need a nap? Probably. Is the world going to end? No. Sometimes you’ll want to do something with your significant other and it just won’t work out because your body is fighting back. Sure, the first few times it’s okay to be frustrated–embarrassed even, to fumble over your apologies and stress out that they’ll be upset.

As R.J always says, “We’ll adapt.” Plans change. And even though on the surface it might mess with your emotions and make for a less-than-great day–it doesn’t have to make for a less-than-great relationships. Life happens. You’re still allowed to love and be loved.

10. DON’T: Forget That You Can Be Loved

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Baby, it’s you–me, the beta blockers, the afternoon naps and ALL OF THE FLARES!

On the forum the other day, someone asked: “Who wants to be with a person that is chronically ill?” I stopped, thought and responded something that I still stand by:

You’re not just a person who is chronically ill. You are a person, and you happen to also be chronically ill. Don’t let your disease define your personality. You are so much more than an illness, and when you stop thinking of yourself in that box–others will too. Your illness will limit a lot of things in your life–but it doesn’t make you any less able to be loved. Not by a long shot.

 

Whatever…Nothing!

Yesterday, I (with my Mommy) was running late for my pain specialist. I hate running late. It stresses me out. I think it is incredibly rude. But, yesterday, when my Mommy was apologising for making us late, I was just ‘whatever.’

Then I thought about it and I’ve been ‘whatever’ for quite a while. It’s not such a bad feeling – it’s stress-less, very laid back and unemotional. But it’s very nothing.

I also noticed that I haven’t been writing anything personal on this blog – it’s been all about research and studies. It’s because there is nothing.

I think I’m on too many drugs…

When I was first diagnosed, (other than a quick dose of steroids) I was immediately put on Lyrica. Anytime I felt more pain, the doctors increased my dosage…my current Lyrica dosage is 225mg both morning and night.

I also take 150mg of Sertraline for depression – it used to 100 mg but during this ‘whatever, nothing’ stage, I felt that I needed something extra. My GP was happy to increase the dose. There’s also 1100ʮg per week of Thyroxine for my under-active thyroid; the Pill (I went off it (because who’s having any sex?) but my periods were unbearable!); and, of course, there’s all the supplements that we’re supposed to take: vitamin D, Red Krill Oil, D-Ribose, Sam-E, CoQ10, and a multi-vitamin.

Anyway, my point is that no-one tried anything except the Lyrica…why not?

So, having visited the pain specialist yesterday, we’re trying something else: I’m running out of all the supplements at the moment, so I’m just going to stop them as the bottles empty; and I’m going to wean off the Lyrica:

doses

Because this ‘whatever, nothing’ just isn’t good enough. I want more. I NEED more!

Fierce and Fabulous (and Depressed!)

Alisha - Invisible FOne of our fabulous FCK bloggers has been presented with Fighterzine‘s  first Fierce Fabulous Fighter Award: Alisha Nurse from The Invisible F. Alisha is a very worthy recipient of this award – you’ll have noticed I re-blog her quite regularly.

In fact, even before I found out Alisha was a Fierce Fabulous Fighter, I was going to let you read this one:

Depression Awareness Week

It’s officially Depression Awareness Week and I want to ask you to take time to either learn a little bit about this illness, or help raise awareness.

Photo by Gloria Williams

Photo by Gloria Williams

For a very common illness which will affect 1 in 5 people at some point in their lives 1) there are still ALOT of misconceptions about depression, and 2) people don’t realise the seriousness of it.

In case you didn’t know and you’re asking me now, what is depression?

It is the feeling of persistently feeling sad for more than a couple weeks accompanied by other symptoms. Read more about it by clicking on the link above.

Who gets depressed?

Depression can affect anyone. It does NOT discriminate. It doesn’t care who you are, what job you have, how qualified you are, or that you’re determined to be happy. You might be at risk of getting it if:

  • It already runs in your family
  • You have low self esteem
  • You live with a long term illness

But you can also get depressed for no reason. Perhaps you’re one of those affected by a chemical imbalance in the brain, (particularly of the neuro-transmitter serotonin which regulates our moods). Even if you don’t naturally have a lower amount of serotonin in your brain, if you get depressed it may lead to lower levels of this neurotransmitter, hence, the need sometimes for anti depressants.

So you see, it is a real illness caused (or causing) physical changes in the body. It is not imagined, it is not feigned and there is no one remedy that works for everyone.

Make a difference

Stigma attached to depression often causes people to hide. And if people are hiding they cannot get the help they need to get better.

Instead, many give up.

More than 70% of recorded suicides are committed by people with depression. In the UK and Ireland alone  more than 2 young people commit suicide every day.

This reality came back to haunt me this week as my friend almost ended a statistic. But thankfully, she belongs to the charity Depression Alliance which provides key volunter led support. We were able to get her medical help, and she remains in hospital recuperating.

I end now how I started. By asking you to do something to further this cause. Share some knowledge, learn about it, start a discussion, volunteer or donate to my fundraiser to raise money for Depression Alliance. It’s imperative to me because it is something I’ve lived since childhood.

I too have hidden, been ashamed, laid in hospital recovering from failed suicide attempts, been criticised and scorned, even by those meant to care for me. It’s taken me a long time to get to this place of talking openly because I realise someone has to, even if it’s not easy. Even one life saved is a difference made. The life saved could be someone you know even.

Thankyou for reading with an opened mind.

Gentle hugs :)

N.B. The Depict Depression fundraiser art competition is still open. Prizes include Estee Lauder gift sets, book vouchers and Vicky Scott artwork. Deadline Wednesday 17th April 2013.

Fenomonal Fibromyalgia Forms

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This is what my lounge room looks like at the moment (and has all week!)

Currently, I am making a claim against my Superannuation insurance and the amount of information they want is phenomenal – hence all the paper all over my lounge room (you can hardly see my laptop!)

They asked for all the basic stuff (which doctors have you seen, when was your first visit, when was your last visit, etc) My GP was fabulous by giving me my whole medical record on a disc, so I was able to give them 13 pages of treatments that I’ve tried and the dates – this had to include medications, supplements, alternative therapies, etc)

Finally, after a week of working on this form (and a lot of brain frazzle), I got to the last question: Please state in your own words how this disability is affecting you and/or make any further comments in relation to this claim.

This is my response:

Although, medically, I also suffer from depression, hyperthyroidism and morbid obesity, these conditions have no functional impact on my ability to obtain and retain employment. My claim is for my loss of functional capacity due to Fibromyalgia and its associated symptoms.

Currently there is no cure for Fibromyalgia, just management.

Despite reasonable treatment, I have been told by my doctors that any further reasonable treatment is unlikely to result in significant functional improvement.

I experience frequent (more than daily) periods of fatigue when performing day-to-day activities around my home and community. Ordinarily, I am able to walk to my local shops however, often I need to organise for some-one to pick me up for my return home. It is unsafe (and painful) for me to drive any considerable distance. I have slowed movements and reaction times, so I am very hesitant to drive my car. Also, my mind tends to wander (often in the middle of a conversation) so I believe I would be a danger to other drivers.

I am able to walk around a supermarket or shopping centre slowly for short periods (and I have recently been issued a Disabled Driver Permit so I can park closer to these places). I am regularly too fatigued to prepare my own meals or vacuum my house (I only have a 2 bedroom unit but I require Home Care services from the Glen Eira City Council). I do not shower regularly as getting in the shower, washing myself, getting dry then getting dressed often means I need to rest afterwards.

I can manage most daily activities requiring the use of my hands and arms, but I have difficulty picking up heavier objects (especially if the shape of the object is awkward), handling very small objects (eg: getting money or cards from my wallet), or doing any activity that requires strength (eg: cutting up watermelon or opening a jar).

My hands and arms ache if I need to drive my own car and I often experience numbness or tingling in my fingers. I describe the feeling as ‘carbonated blood’ – it feels like my insides are fizzy. My hands feel like they’re not attached to my arms – they feel both too heavy and very light at the same time. I regularly have severe throbbing in my wrists and up my arms.

I find it extremely difficult to move after sitting for longer than 15 minutes, although it is exceedingly uncomfortable to sit in one position for any period of time. I need to move and stretch a lot to remain comfortable. Climbing or descending stairs causes shooting pains in my ankles and lower legs. My ankles and feet feel swollen (despite no visible swelling) and numb. The bones in my feet feel like they have moved while I was sitting down; when I stand up, they hurt and feel like they’re moving (painfully) back into place.

I have a heightened sensitivity to light and sound. I cannot attend live theatre or movies due to a sensory overload. Telephone calls must not be too long. Family dinners (and the associated noise and children) regularly result in severe headaches. I am extremely susceptible to outside stimuli (eg: I have to ask my mother to turn off the radio when I travel in her car). Too much surrounding conversation or activity causes my brain to shut down – I find that I can no longer think and I need to find a quiet place. When it is really bad, I hide inside my house with the blinds closed and candles burning for light.

I experience ‘Fibro Fog’[1] in waves. I can physically feel when my mind starts to lose clarity. My long-term memory is fine but I have difficulty recalling events and activities of more recent times (I hate it when my mother tells me that we’ve spoken about something when we haven’t then she says we have and that I can’t remember because my brain’s not working properly). I require lists to remember even one item at the supermarket or activities that I need to do – I have gone to the supermarket before when, in fact, I was supposed to go a doctor’s appointment.

I am easily distracted and have significant difficulty focusing on a task if there are other activities occurring nearby (I look at the remote control – lots of buttons – what did I want to do with that? Why did I pick up the remote control? Oh yeah, delete – which button is that?). My levels of concentration have diminished greatly and I find myself forgetting what I was doing, or what I need to do, to finish a task. When this happens, I have to stop myself from getting anxious and stressed, take a breath and a step backwards and try to talk myself through it.

I often forget to complete regular tasks (eg: putting the bin out on rubbish night, picking up a loaf of bread). I can’t remember if I’ve already done things (eg: send an email or pay bills) earlier in the day. I realise that these are things that people may normally forget sometimes but I do it ALL the time.

I have difficulty in prioritising and need to think carefully about the order I put things on the lists. I find making a decision quite difficult and stressful. To avoid the situation, I tend to keep to regular habits (eg: specific takeaway meals on specific days). I try not to put anything important away as I frequently misplace things.

My head feels too heavy for my neck and shoulders. I have a dull ache permanently in my head and neck – even when I don’t have a ‘headache’.

Most worrying to me is my loss of words. I can’t find the words in my brain anymore. (This is most disturbing to me as I recently completed by Bachelor of Laws with Honours, so normally my brain is extremely organised).

The symptoms of Fibromyalgia are neither constant nor consistent. They can range from very mild to severe; and it can all happen within one day. They may come and go at different times and this is where my fundamental problem with employment lies. I have good days and bad days however I never know when these will occur. There is no consistency, although there appears to be more bad days than good.

As such, despite being able to work on my good days/hours, I am unable to provide an employer with any scheduled work days/times. My current employer has been very considerate and co-operative in regards to my condition. We have tried different combinations (eg: 3 hours x 3 days per week in the afternoons, working on the weekend when there are no distractions or noise, working late at night) however none of these options have worked reliably. I cannot envisage how I can maintain employment alongside this restrictive condition.

I also added some fact sheets from Arthritis Victoria, Dr Yen and Fibromyalgia Network.

So, do you think I covered most of it? 



[1]          Fibro fog is a term given to the variety of cognitive problems that many fibromyalgia sufferers face during their illness. Fibro fog encompasses memory loss, difficulties using language, and difficulties with learning. These symptoms tend to descend in a haze or “fog,” around the sufferer (http://www.fibromyalgia-symptoms.org/fibromyalgia_fibrofog.html as at 23 February 2013).

You are NOT your Illness!

Yesterday, I wrote about Learning to Live With the Loss of YOU and the framework that allows us to live with that loss. I talked about the uncontrollable anger that I am currently experiencing.

Chronic pain has a way of radically changing a person’s life; even those with strong self- esteem and coping skills struggle (yep, even me!). Healthy self-esteem enables us to accept, respect, trust and believe in ourselves. Chronic pain can take that away from us: for some, the most difficult blow comes when you can no longer do things connected to your identity (loss of a job, not being able to participate in sports or hobbies, not being able to spend time with friends); for others, using a cane or walker or having to use a handicapped placard is devastating.

chronic comic 176It’s a vicious cycle. Pain increases negative emotions such as anger and depression (and I’m really NOT looking forward to reaching that stage in the framework!) Anger, supposedly, is a necessary stage of the healing process; and anger has no limits – it can extend to your friends, your doctors, your family, yourself and even to God. Underneath all that anger is pain, YOUR pain…MY pain. It is natural to feel deserted and abandoned; and anger is an anchor, giving you temporary structure to the nothingness of loss. It builds a connection (from you to them). It is something to hold onto…and a connection built from the strength of anger feels better than nothing.

However, an increase in our negative emotions and other added stressors causes an increase in our pain. We’ve all read posts from people who have lost the desire to keep fighting their pain and fear their future. They have trouble asking for help and can even convince themselves that their loved ones would be better off if they were no longer a burden. Pain distorts our overall perception of our life, our contributions and past accomplishments.

But there is good news: a plan of action to help, based on two simple principles.

Care For Yourself

Treat yourself with the same respect you would give others. Get in touch with your needs. What would help and encourage you? Often just being listened to and validated is a powerful first step. Allow time for yourself. Get creative and explore new hobbies and interests that could decrease your pain through distraction.

chronic comic 167Allow yourself to have fun and laugh. Rent a funny movie, walk in the sunshine, take a bubble bath, listen to music, relax and meditate. Find things that are practical, affordable and available to you on a regular basis.

It is normal to get frustrated and to feel like we’ve done something wrong, and we often beat ourselves up because we feel like we should be doing more. That is what Cognitive Behavioral Therapists call this ‘catastrophic thinking.’ We need to challenge our distorted thoughts and learn to be grateful for what we have.

  • Remind yourself that you are worthwhile — you are valuable not because of what you can do but because of who you are
  • Stop comparing yourself to others — don’t let them define you; you control your heart and mind
  • Find new ways to express yourself — you still possess the same qualities; you just need a new way to share them with others
  • Grieve the loss of your “former self;” accept that some things have changed and embrace the ability to create a new vision for your future
  • Make every day meaningful — set S.M.A.R.T. goals that help you move forward

SSpecific: A specific goal has a much greater chance of being accomplished than a general goal. To set a specific goal you must answer the six “W” questions:

  • Who:      Who is involved?
  • What:     What do I want to accomplish?
  • Where:    Identify a location.
  • When:     Establish a time frame.
  • Which:    Identify requirements and constraints.
  • Why:      Specific reasons, purpose or benefits of accomplishing the goal.

EXAMPLE:  A general goal would be, “Get in shape.” But a specific goal would say, “Join a health club and workout 3 days a week.”

mMeasurable – Establish concrete criteria for measuring progress toward the attainment of each goal you set.

When you measure your progress, you stay on track, reach your target dates, and experience the exhilaration of achievement that spurs you on to continued effort required to reach your goal.

To determine if your goal is measurable, ask questions such as: How much? How many? How will I know when it is accomplished?

aAttainable – When you identify goals that are most important to you, you begin to figure out ways you can make them come true. You develop the attitudes, abilities, skills, and financial capacity to reach them. You begin seeing previously overlooked opportunities to bring yourself closer to the achievement of your goals.

You can attain most any goal you set when you plan your steps wisely and establish a time frame that allows you to carry out those steps. Goals that may have seemed far away and out of reach eventually move closer and become attainable, not because your goals shrink, but because you grow and expand to match them.

A goal can be both high and attainable; you are the only one who can decide just how high your goal should be. But be sure that every goal represents substantial progress. A high goal is frequently easier to reach than a low one because a low goal exerts low motivational force. Some of the hardest jobs you ever accomplished actually seem easy simply because they were a labour of love. When you list your goals you build your self-image. You see yourself as worthy of these goals, and develop the traits and personality that allow you to possess them.

rRelevant– To be relevant, your goals must pertinent. A bank manager’s goal to Make 50 peanut butter and jelly sandwiches by 2:00pm may be Specific, Measurable, Attainable, and Timely, but lacks Relevance. A goal that supports or is in alignment with other goals would be considered a relevant goal.

A relevant goal can answer yes to these questions:

  • Does this seem worthwhile?
  • Is this the right time?
  • Does this match our other efforts/needs?
  • Are you the right person?
  • Is this acceptable for correction?

tTimely – A goal should be grounded within a time frame. With no time frame tied to it there’s no sense of urgency. If you want to lose 10 lbs, when do you want to lose it by? ‘Someday’ won’t work. But if you anchor it within a timeframe, ‘by May 1st,’ then you’ve set your unconscious mind into motion to begin working on the goal.

Develop a Support Network

This isn’t always as easy as it sounds. Family, friends and faith are the most common relationships we rely on in times of need. Chronic pain touches every aspect of your life which makes it critical to surround ourselves with others who are supportive and understanding of our pain. chronic comic 174Family and friends may not want to hear about your pain and may become uncomfortable being around you and watching you suffer, but it is important to talk about it. Research has shown that family and friends play a tremendous role in helping patients deal with a chronic illness. But sometimes it is difficult for a) you to let those people in, and b) for those people to know what to do help. (You can find some tips for both them and you at Chronic Counsel)

Some healthcare professionals even have trouble listening to and validating chronic pain patients. Learning to be more assertive and planning goals for doctor visits can help. You need to take an active role in your healthcare.

Many find encouragement and resources through their faith to help them see a bigger picture than their daily pain and suffering. Some people want to make a difference in their community. Research shows that when people volunteer and help others, they seem to do better finding meaning and purpose in their own lives. We need to be connected to others — don’t try to fight your pain alone.

To improve your self-esteem and apply these strategies, you need to make yourself a priority and have people in your life who love you unconditionally. Being in a group or seeing a counsellor can help hold you accountable so you don’t give up before seeing the results of your efforts. Your pain does not define you — take control and believe in yourself. You are worth it!

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