In Exactly 4 Hours…

In exactly 4 hours, I should get to see how/if all the hard work of the last couple of months, promoting (read ‘nagging’) the Make Fibromyalgia VISIBLE Thunderclap, has had any type of effect on Facebook and Twitter.

Hopefully, all of those supporters (as I write, at 757) and at least some of their friends and family (currently at 254,384) will upload this picture to their Facebook cover-photos for the entire month of May.

Right click this picture to save to your computer; then upload to your cover photo.

Click on this picture: Right click on the full-size header to save to your computer; then upload to your cover photo.

Visible army squareHopefully, all 953 members of the VISIBLE Army will upload their VISIBLE Army photo to their profile pictures for the entire month of May.

Hopefully, in exactly 4 hours, more people will be aware the Fibromyalgia exists.

However, in exactly 4 hours, I will be sitting in my dentist’s chair, getting prepped for a crown (Not happy, Jan!)

lrg_Ornamental_Divider__Englische_Linie

niagaraBut one thing I definitely won’t be missing is when Niagara Falls goes PURPLE for Fibromyalgia Awareness. Niagara Falls will be PURPLE from 10:15 to 10:30pm EST on May 12th. No, I won’t be going to Canada! I’ll be watching it live from my lounge room in Melbourne, Australia on http://www.niagarafallslive.com/

If you want to see it, too, and you’re somewhere else in the world, check out the countdown to Live Webcast: Niagara Falls & Fibromyalgia Awareness.

Can you tell? I’m a bit excited by all the happenings for Fibromyalgia Awareness.

Things I Miss Most Because of Fibromyalgia

Inspired by Toni Bernhard, J.D. in Turning Straw Into Gold…What do you miss most because of FM problems?

As Toni said: I’m trying to keep a non-complaining tone as I write.

Complaining does no good, so this is how I see my life in a realistic and factual manner.

1. Spontaneity

chronic comic 175Just like Toni, it is my guess is that this is #1 on most of your lists.  But this works both ways: sometimes you have to painstakingly plan everything so you don’t over-do it (yes, pacing!). And even then, you might be having a bad day and all that planning goes down the drain.

But, if you’re lucky, you may wake up feeling horrible (what? you say) so you ditch all the plans for the day…then, suddenly, in the afternoon, you begin to feel better so you go for a walk and get a chance to slowly window shop and appreciate your local area – something you just haven’t had time to do before.

2. Variety

As you know, I live alone. Most of my days are pretty much the same, all the time; unless some-one I know cares to visit or take me somewhere outside the 10km area zone that I am restricted to because it hurts to drive further. I tend to see the same people every day: there’s the hairdresser who calls me in for a coffee each time I pass her shop, there’s the guy who works in the bottle shop (near the supermarket) who takes a cigarette break with me each time I go shopping, there’s the florist who waves to me as I pass her store and gives me great discounts, there are all the ladies in the post office who always ask if it’s a good or bad day…and care.

Hey! Hold on…those aren’t such bad things; in fact, it makes my city living feel like a little village, and I would never have met these people if I hadn’t have gotten sick.

3. Being actively involved in the life of my family

I'd really like a girl!

I’d really like a girl!

My family now has 5 children under 7 (and another one on the way) and it hurts being in the same room with all of them sometimes.

But, if I was well/cured and working, I wouldn’t get to see them anywhere near as much. I wouldn’t be able to baby-sit or have one of them sleep over during the week, or do creative activities during school holidays.

4. Socialising

When I think about it, I didn’t really do much socialising when I was studying or working – I was too busy. I had some invitations (not too many) and yes, they have dried up now…but, really, not much has changed in that department.

5. The ability to pursue my former interests

I can no longer play squash with my father (but my father and I are no longer on speaking terms anymore, so that may have happened anyway!)

I used to love to read…and I still love to read, except that, by the time I have read 4 pages, I fall asleep.

I used to love spending a whole day shopping with my Mommy…mainly just looking – now I can only last 2 hours at most. Buy Mommy is not so well, either so outrageously long shopping trips would have been out of the question anyway.

6. Health not being the topic of conversation

64. More to meEven when (or maybe especially when) I’m not in the room, the conversation turns to my health. Am I looking good? Am I getting better? Why can’t I go back to work? Isn’t there something I can do?

I don’t want to be the centre of attention – at least, not for this ‘achievement.’

So, really, I don’t miss any of these things – what I really miss is the CHOICE: the choice to be spontaneous, the choice to re-introduce variety into my life, the choice to spend more time with my family, the choice to go to the local pub and meet new people, the choice to find new interests, the choice to stand out for something other than my weird condition; and the choice to be anybody I want.

What do you miss?

Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversBottom of Form
Her new book, How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrowis available for pre-order and will be released in September.

Passed Over!

Tonight was the second night of Passover* so I’ve had a busy couple of days…with way too much over-stimulation.

Recently, millions of grasshopper-like insects swarmed Egypt, damaging crops and wreaking agricultural havoc.

The timing of this massive infestation of locusts, just three weeks before Passover, seems positively biblical!

The story of Passover tells how God hardened Pharaoh’s heart and then punished him for his stubborn refusal to let the Israelites go free. The 10 plagues were a divine demonstration of power and displeasure designed to persuade Pharaoh to allow the people to leave.

10-Plagues

This locust infestation is reminiscent of the eighth plague that struck the Egyptians in the Passover story.

It doesn’t seem fair to have punished Pharaoh – wasn’t his refusal merely a result of God hardening Pharaoh’s heart?

Yet maybe we can learn a valuable lesson from this.

Often we may think that it is impossible to break a bad habit, to kick an addiction, or to introduce a healthy practice into our lives.

We justify our behaviour by saying “it’s been so long since I [fill in the blank]…”

We feel that we are trapped by the fact that we have always done things a certain way. We don’t believe that healthy changes are even possible.

In response to this attitude, we read about the plagues and about Moses’ warnings to Pharaoh.

Yes, it is true that God hardened Pharaoh’s heart. BUT, Pharaoh always had the ability to overcome his hardened heart.

This may have required a herculean effort, but it was still possible to make amends and avoid the punishments.

Pharaoh was guilty of choosing NOT to struggle. He was guilty of choosing to continue his destructive path and hide behind his past pattern of cruelty. It is that conscious choice for which he was found culpable and for which he was punished.

So, within the plagues lies a very powerful message for all of us struggling with FM.

No matter how strong or negative our feelings are, we don’t have to be trapped by them.

With the right tools, the appropriate support, and a deep resolve we CAN help ourselves (even if it takes a herculean effort!).

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* Passover (Hebrew: Pesach) commemorates the story of the Israelites’ departure from ancient Egypt, which appears in the Hebrew Bible’s books of Exodus, Numbers and Deuteronomy, among other texts. We start the festival with two nights of traditional meals known as seders where we retell the story of the Exodus – lots of singing, talking, and even, fighting.

The Meaning of Life (or Fibromyalgia)

I have no idea why I have FM: I didn’t have an accident resulting in an injury; I didn’t have a traumatic upbringing, or even a traumatic event. It appears to me that so many of you can attribute your FM to a particular incident or trauma.

112. fibro reason #1This is sometimes characterised as primary (idiopathic) FM.  In primary FM, the causes are not known whereas in secondary FM, the causes can be identified. According to the American College of Rheumatology, primary FM is the more common form. However, from reading all of your stories, it seems to me that secondary FM is more common.

Many experts believe that primary FM is a dysfunctional disorder caused by a constellation of biologic responses to stress because of negative personal histories or genetic factors such as: family factors, chronic sleep disturbance, abnormalities in the brain, autoimmune disorder,  post-traumatic stress disorder, hyper-vigilance, muscle cell abnormalities, autonomic nervous system dysfunction, immune or endocrine dysfunction.1

123. fibro reason #2In secondary FM, a specific cause can be identified. The symptoms are identical to those of primary FM, but are harder to treat. Possible causes of secondary FM include: physical injury (secondary FM developed in over 20 per cent of patients who had neck injuries); ankylosing spondylitis; endometriosis; surgery; heavy metal and environmental toxicity; upper spinal cord injury; viral, bacterial or fungal (candida) infection; pregnancy; hormonal imbalance or steroid overuse.

128. fibro reason #3I know that many people blame their FM on an emotional trauma from their pasts; however a new study contradicts the belief that emotional trauma can lead to FM. This study aimed to evaluate the relation of disability and physical and mental health status with potentially traumatic life events before the onset of FM in women diagnosed with this syndrome. Researchers found no such relationship. They found no relationship between the perceived causes of illness and traumatic life events, either in childhood or adulthood.

They looked at potentially traumatic life events in women with FM and compared them to illness severity. They also looked into what the women believed had triggered the illness.

132. fibro reason #4The only correlation they found was that women who’d had a traumatic event in childhood were more likely to attribute their illness to psychological causes. That doesn’t mean the childhood trauma did lead to FM; it means that people with past trauma are more likely to believe it does. This research did not examine the validity of these beliefs. The results raise questions about the importance of psychological aspects in the appraisal of the trauma and its possible relation to the psychological functioning in women with FM.

Do you think you know what caused your FM? Was it a physical trauma? An emotional trauma? Or, like me, do you have no idea?

1. http://www.healthsolutionssource.com/Fibromyalgia.html

Loneliness is the Most Terrible Poverty

lonelyI’m lonely.

I can’t even describe my loneliness

Mommy is stuck in bed: she can’t move (and Mommy, don’t feel guilty – you are entitled to rest and get better)…Thais is now in India (and Thais, no feeling bad – you keep having fun and sending back photos...the boy that I may have been interested in(and who I had hoped may help me escape this total solitude) is out-of-bounds…and I can’t confide in my cousin/friend (who ‘called’ the boy out of bounds) because I am still angry that she has imprisoned me in my isolation (whether the boy and I worked out or not)…

The last few days I have stayed in the same pyjamas, not leaving the house – swimming in my seclusion. Is there a record for how long some-one can stay in one pair of pyjamas non-stop?

I’m looking forward to the hospital because I’m hoping the higher dose of ketamine will let me sleep for the whole week – that’s a week less loneliness! (And I’ve organised extra posts for this blog, just in case I am unable to string two words together.)

I’m realising that I have nothing to do – no work, no friends, no life – and I’m hitting the ‘now what?’ time. I can’t be bothered with anything – it’s just sad. Despondency is the only word I can think of.

loneliness_working_from_homeI tried to distract myself by starting a new website – it’ll be called fibromodem.com – and putting everything in the one place. All I got was brain frazzled (and couldn’t do anything for 2 days – good thing that I save some extra research posts for such occasions)! The website will be up soon…it just seems that I need a little more time than I originally thought. I HATE that I can’t have what I want immediately (especially when I’m using it to hide from myself!)

I have no idea how to fix this problem. I have no idea how to meet any new people. I have no idea why all my old friends are gone.

I know that all of you (whether you’re married, attached or single) understand this without me having to find the right words, and I realise that many of you look to me for some answers; but this time, I have no solutions.

Happy Birthday

Today is my baby brother’s 40th birthday. Happy Birthday Mitch!

His celebrations have been going on for a week. As you know we had an afternoon tea for the family on Sunday.

Welcome to Mitch Air, Flight 40!

Introducing the staff of Mitch Air…

Your trolley dollies will be serving…

Some of Mitch Air decor…

My beautiful (most of the time) niece, Naomi.

And I learned that blue food dye may not be the best thing to serve little children.

His BIG celebration with mates will be on Saturday night. (I was invited but I’ll be recuperating.) And tonight, late – after my hydro session and, as my last meal before my gallbladder surgery; Mommy, Mitch and I will be going to a huge ribs dinner (food I don’t think I’ll be able to eat for quite a while after the op).

So today is last-minute stressing about my operation (and probably more stressing than normal because I’m not allowed to smoke) and organising. While I probably won’t be able to answer any comments, I have written some extra posts because I promised myself that I would have a post every day.

See you after a fabulous (drug-induced) sleep!

He’s Back! Oh, no…Wait, He’s Gone Again!

So contact with my Father has remained inconsistent since my last post starring him. Not because of the post – because, as I wrote at the time, he doesn’t bother to read my blog – just because of our inexplicable relationship. The only thing that has remained consistent in each of his phone calls (there’s been 3!) is that we have an argument.

I have always tried not to argue with my parents – they are my parents and deserve respect – but this is getting crazy. Mostly, instead of arguing, I say ‘okay’, hang up and burst into tears. Then, of course, I have a flare.

My Father is currently in rehab (funnily enough, the same place that I go). He was transferred there after a back operation. I had to call the hospital to find out that he had been transferred!

Our last phone call was Monday night (the eve of the Day of Atonement, in the Jewish religion), when he called me to tell me off for something else (you’ll hear about it in a minute). Yes, I said ‘okay’. Yes, I hung up on him. Yes, I burst into uncontrollable tears. I just want to have a normal father/daughter relationship with him (is there such a thing?)

On Friday morning, he phoned me while I was asleep and left a message. I don’t want to return the call just to have another argument and another flare, so I wrote him a letter. I realised that this letter might end our relationship totally but I cannot handle it the way it is now.

This letter took me a couple of hours to compose and write (and cry about) – I wanted him to REALLY understand (WARNING: This is a very long letter):

Dear Dad,

You called this morning, when I was asleep, and I can’t decide whether I should call you back: every time we have a conversation, we have an argument. And every argument we have causes my fibro to flare (that is: every part of my body starts to hurt and this can last two to three days). I don’t know if it is worth it, as you don’t seem to think that I am worth it.

I do NOT try to upset you or Yvonne – I ALWAYS try to do the right thing (I was trained that way by my Zajda!) So, while I have your attention, I’ll let you know how I see our (yours, Yvonne’s and mine) relationship:

  • Everything I say is wrong – either Yvonne gets upset by it, there and then; or you phone me later to admonish me.

You tell me that a lot of it is because I talk about Mum and that part of my family – but they are my life. I don’t go out very much and, if I do, it tends to be with Mum (she is the ONLY person who can be bothered to come get me and take me anywhere).

I am sick. I have been this sick for a whole year, yet I think that you have only visited me (maybe) four times. (One of those times was because you needed extra meds and another was because I begged you to pick up some food for me). You do not support any of my fibromyalgia awareness activities; in fact, you probably can’t even describe my condition. I have tried to get you to look at my blog so you can understand but you show absolutely no interest. I know that you are going through rehab now (and I hope it is helping and you are doing better) but I have been attending rehab for 3 months. The pain you are having now is the pain I have each time my body flares.

I have only one friend (Thais) who bothers to stay in contact with me.

So, yes, if you want me to talk about anything in my life, it is likely to include my mother and her side of the family.

  • Then, I decide, for the sake of peace, I will just be quiet. I will attend any family dinners but I will shut up.

That doesn’t help, either. You phone me to tell me that I do not talk to Yvonne, the boys or her mother (I have nothing to say!); that I must include them all in my life and conversations.

  • So, I try to talk to Yvonne when I call you at home and she cuts me off EVERY time with ‘I suppose you want to talk to your father’.

Well, of course I do – what am I supposed to do then?

  • The other day, when I left the hospital and as I was getting in the car, I thought to myself ‘Shall I call Yvonne and tell her that I’ve seen you and that you are sleeping’ so she didn’t need to rush over.

No, I won’t, and I started the car and drove away. Then I thought that, if I had seen Uncle Jack in hospital (recently), I would call Mum in that same situation, as knowing she didn’t need to rush to see him would most likely make her life easier. So I stopped my car by the side of the road and called Yvonne. The conversation went something like this:

S: Hi Yvonne, it’s Simone. How are you?
Y: Are you there now?
S: I just left. Dad is sleeping at the moment.
Y: Well, I’m rushing around. What did you want?
S: I just wanted to let you know that Dad was asleep so you didn’t need to rush there.
Y: Your father and I are communicating just fine, thank you. Is that all?
S: I also wanted to let you know about Danny’s on the corner.
Y: I know it. I don’t think your father is up to walking to a restaurant.
S: I just meant that maybe one time you could pick up a nice lunch to have together…
Y: Look, Simone. Everything is fine. We are all organised. You don’t need to worry. Was there anything else?
S: No, I guess I’ll see you another time.

Now, I remember that conversation very well because I was really upset afterwards. I did NOT tell Yvonne NOT to visit at the hospital, yet you phoned me to tell me that Yvonne can come and go as she pleases. I KNOW that! I just wanted to let her know that she didn’t need to rush around, to take some pressure off – which, obviously, didn’t work.

  • After your phone call to me, where I just said okay and hung up, I fell apart. I can’t even describe the type of tears that were pouring out of me (and I am still very upset just writing about it).

I feel helpless and hopeless, as I can do no right.

I get it, Dad. You and Yvonne are a couple – I KNOW that. I have no problem with that – UNTIL it affects our (yours and mine) relationship.

I feel like you are not allowed to spend any time with me – I am your daughter. Yes, I am over 18 or 21 or whatever…but I will always be your daughter. You seem to forget that, or maybe, take it for granted.

I understand that Yvonne has a problem with talking about anything to do with your previous life – but, hey! you’ve been together for 20 years; perhaps it’s time for her to get over some of her insecurities? Especially as it feels like I am part of the life she wants you NOT to be a part of, anymore.

I understand that you have to compromise because you live with Yvonne. But, sometimes Dad, you need to choose me – I am NOT always in the wrong!

Perhaps you’re scared, at the moment? You’ve just had an operation. You can’t work. You can’t do very much for yourself. You don’t have a home of your own. You MUST get along with Yvonne – is that any way to live? And alienating all your own (not just Yvonne’s) friends and family is not leaving any doors open. Anyway, that’s just my psycho-babble – I could have it very wrong; but I’m looking for excuses for you and your behaviour towards me.

I CANNOT deal with stress – for some unknown reason, my body has rebelled against me and won’t let me lead a normal life; so yes, I know that stress is part of life, but I can’t handle it and need to avoid it.

So, I still don’t know if I want to return your phone call. What do you think? 

I love you

His response came in the way of a text:

1stly before delivering a letter u should consider the ramifications. And then have the guts to deliver it in person. Any time u want 2 discuss all the points ring me. Until then look in the mirror.

I guess he really didn’t get it, did he?

Yes! I Have a Father.

As you know, I spend a lot of time with my Mommy – she makes up a major part of my life so, if you are going to have a conversation with me, she will probably be mentioned.

BUT, this post is NOT about my mother. It is about my father – Yes! I have a father! You haven’t heard about him much, have you? I can’t even remember if he has ever been mentioned in my blog at all. I love my dad very much but he’s the kind of father who figures that he got me to the age of 18, so he has done everything that he is supposed to do and can now just leave me be. Nonetheless, and unreasonably, I continue to strive to attain his approval and admiration. Realistically, I’m never going to get it. Yet, for some reason, I still try.

Now, I feel pretty safe about writing about this topic here because my father has never even bothered to look at my blog. According to ClustrMaps, 22,516 people have visited this blog – but not one of them is my father.

I’m not sure that my father actually knows what FM is – he doesn’t read any information that I forward to him in emails, so I printed it all out. He still didn’t bother to read anything – the papers are still sitting on the backseat of his car. He has never watched any of my videos. He hasn’t visited my Facebook page.

When I received 91% for my last (taxation law) exam, he said what happened to the last 9%. When I graduated with honours, he hadn’t even realised that I was graduating with honours and then asked why I wasn’t the dux. I stood outside the training sessions of his (religiously) favourite football team for three weeks in a row, in the middle of winter, so I could get him a football shaped port bottle signed by every member of the football team – the bottle sits in his garage. You get the idea.

Now, Mommy and Dad have been divorced/separated for over 20 years, and Dad has been with his current ‘partner’ for nearly 20 years. We don’t necessarily get along all of the time. She has been upset with me when I introduced her as Dad’s girlfriend, but she has also been upset when I said she was Dad’s partner. So, I just don’t know how I’m supposed to introduce her.

My father called me today for two reasons (and not one was to check how I was going): firstly, he was upset about one of my personal status updates on Facebook. I had written that I had woken up at 3am one morning, giggling, because I had been thinking (in my dream) how the pasties that strippers wear on their boobs could work on a penis. I have no idea about what the rest of the dream was about, but I thought it was funny, so I put it in a status update. Now what is really interesting is that Dad doesn’t look at Facebook (or that’s his excuse for not looking at my page) – his partner does, though.

The second reason he called was to tell me that, if I was trying to phone him around dinner time, call the house line. His partner thinks that I am trying to avoid speaking to her (rather than just making sure that I reach my father), so my father decided he should say something. Oh, and by the way, when you talk to her, be cordial, ask about her mother, her health, her sons…

But there are restrictions, I am not allowed to talk about my Mommy, or her partner, or that side of my family because she doesn’t like it. It upsets her.

So getting together with my father and his partner is a particularly comfortable setting – NOT! I don’t talk about my condition because they are not interested; I can’t talk about other stuff that I have been doing because, mostly, it involves my mother; and I am not permitted to get too excited about anything because then I’m acting like a child.

I don’t want to upset my father (still seeking his approval) so now, more often than not, I just shut up; but today’s phone call has my father asking me to involve her more because she feels left out.

AAAAAAAAARRRRRRGGGGGGGHHHHHH! I just can’t get it right. And this upsets me.

The bloody phone call happened about 4 hours ago and I’m still fuming.

Sorry about the rant (but at least it’s a new one and not about doctors!), and I could go on for pages and pages. At least you’ve now been introduced to my father.

Chronic Do’s and Don’t’s

Fibromyalgia is a chronic condition. A chronic condition is a medical condition that will last a long time – perhaps forever. Some chronic conditions get worse over time, some may improve with treatment, and some may remain dormant until an acute flare-up.

The common denominator with all chronic conditions (not just FM): those who are diagnosed with them tend to feel isolated: mentally and physically. It’s a huge blow to learn you will forever have an incurable syndrome that may affect mobility, lifestyle and independence.

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.

Hands up if you never tell people how you really feel – then how are they supposed to know? Hands up if you never let anyone see you when you are having a flare – then how will they know what it’s like? Now, I’m not just blaming us – our friends and family (those that matter) need to make some effort, too.

Tips for You (“the sufferer”):

Put an end to family secrets. Don’t try to protect your friends and family from bad news – communicate directly and openly with family members.

Include your children – even though their understanding of the illness may be limited, children appreciate being told what’s going on around them. Otherwise, children may believe that they are the cause of the serious illness or other events around them. Be open and honest with them, and allow them to ask questions.

Be selective about who you talk to about the illness. Choose carefully those with whom you’d like to share information about this illness. What matters is that sharing the information about the illness will provide a stronger sense of support and strength.

Be clear about how friends and family can help you. People love to feel useful, so don’t be afraid to ask for help.

Be your own advocate. It’s so hard to learn to speak up about your condition. It’s hard to talk about it sometimes. And it’s really hard to ask for special treatment if you’re not that kind of person. But be brave, and learn to ask for help when you need it.

Find a support group. Go to it. Take a family member or friend if you’re scared. It’s okay to be scared.

There will be people who will not understand, and may not believe you. Those people may be people you care about. There may come a point where you simply have to accept that you can never talk about your condition with that person. It will be okay, even though it sucks. Some people simply cannot deal with a chronic illness. And can we blame them? Wouldn’t you walk away from your own chronic illness, if only you could?

Tips for Your Family and Friends (“the Family and Friends”):

Be honest – all I want to know is that you are here and that you care about me.

Be there for me in any way you can.

Come to support group meetings with me. Family and friends are always welcome, and that’s the best place to ask questions you’re nervous about asking.

Keeping it light and making jokes is okay. I’m not as fragile as I sometimes seem. It’s all about the timing and the presentation. Laughter is healthy.

Let me know that I can always talk to you – even if it’s just a vent session.

Always listen when I am frustrated – chronic illnesses are VERY frustrating.

Be there if I need help, but also encourage me when I want to do it myself.

Remind me, every now and then, that I am coping well.

Treat me like a whole person – despite any limitations. I want to feel in control and capable, not as if I have SICK PERSON tattooed across my forehead.

Learn about my illness. Ask me for more information. Just because you read about FM online doesn’t mean you know how it affects me.

Remind me that you are thinking about me – send a card, an email, a text, a phone call (flowers and presents are good, too!)

Offer specific forms of help – you might be able to pick up something from the supermarket for me, when you’re there.

Offer to help research, if I want your help.

Volunteer to watch my children. Take the kids out for ice cream or to a movie to give me some peace or during doctors’ appointments. It’s often hard to find babysitters, and taking kids to an important appointment isn’t always an option.

Offer to drive me to places where I may need help – the doctor’s office, the supermarket, other errands.

Offer to take me to the doctor and take notes for them.

Encourage me to continue trying new things. When treatments don’t work, I get discouraged. Stay by my side, remind me that you’ll be there when I am ready to try something new. (That tells me that I have a reason to keep trying.) Just keep it generic, so I don’t feel like you’re being a know-it-all.

Advocate for me.

DO NOT:

Don’t tell me how I “should” feel – Unless you have my illness, you do not know.

Don’t presume you know what’s wrong with me.

Don’t compare your (xyz) to my (abc). That’s like comparing apples to elephants.

Don’t discuss worst-case-scenarios unless I bring it up first.

Don’t suggest drugs or treatments someone you know takes. I am going through a treatment plan with my doctor – let the doctor take care of the medical advice.

Don’t criticise me for whining on a rough day.

Don’t offer the latest medical advice you heard about on Dr Oz. In fact, don’t give me medical advice at ALL, unless I have asked for you to help research the illness.

Don’t downplay or belittle my condition in any way. I am fighting a battle – don’t lose sight of that.

Don’t assume I cope in the same ways that you do. Let me cope in my own way. Don’t tell me that I am coping the wrong way.

Don’t say, “God will heal you,” it may make me think that you don’t understand what I am going through.

Don’t bring up each “cure” that you’ve heard about. Sometimes I just need a break!

Illness isn’t just a matter of attitude. Don’t say things like “when are you going to get out of bed?”

Be sensitive to my limitations. I know my limitations, which may change from day-to-day. Things I could do yesterday may not be the same as what I can do today. Don’t question that.

Never insinuate that I am”faking it.” People with chronic illness generally downplay the severity themselves, but to hear someone imply that the illness is “made-up” is a special breed of hurt.

Don’t ever ask “How are you?” or “How are you feeling?” because the answer never changes and I don’t want to talk about it. Instead ask, “How is your day going?” or “Is there anything you need help with today?”

 

*** If you need some basic information about FM, please feel free to download any of my pages or brochures to give to family and friends.

*** Perhaps watching a short video may help your friends and family understand more.

*** If you are looking for a support group in your area, the National Fibromyalgia and Chronic Pain Association has a list of world-wide groups (it is by no means complete; so if you have a group, please add it to their list)