A simple question to my family,
What would have been most helpful for you when I was in the worst time with the
My father answered with a response that opened my eyes to what he felt and went through. I am sharing this with you. Take from it what you will, but my fathers opening line "You are not always one" is very true and what is often forgotten when you are overwhelmed with pain.
You are not always "one".
I think that there are a number of things, some of which you did
Knowing precisely what you were
going through and how it impacted you in specific situations was extremely
helpful. And, I think that for the most part you did that very well.
Regardless of the research we could have done on this, fybro (like anything else) impacts on each
individual in a different manner. Thus, although I had an idea of the nature of
the ailment, knowing what it did to you made it easier to relate to and deal
Given our relationship and the similarities (at least in this regard) of our
personalities, it would have been terrific if you had asked for assistance. I
know, believe me I KNOW, how difficult this is. Such a behaviour flies in the face of our shared
"leave me alone" attitude, particularly when we are not at our best. At the
same time I now know that I should have asked more questions and have been far
more insistent on getting answers. I don't think either of us did this very
well; although the bulk of that failure is on me. You were simply acting in the
manner you were taught and had grown accustomed.
Regardless of the previous paragraph, I think it
would have been very helpful for you (or, more importantly now I suppose, for
those you are advising) to ask for specific things to be done on your behalf.
This may be easier for you, me and others. In other words, if the individual
under the grip of fybro were to ask for groceries to be done,
laundry to be taken care of, appointments to be made, etc., it may make the
process of seeking and providing assistance easier. It is my view that simple
tasks like this can better empower the provider and recipient to tackle the
issues together in small chunks; rather than trying to fix the entire problem.
I hope this bit makes sense as I believe it to be critical. And,
notwithstanding that we probably could have done better I think we did a fairly
good job in this regard. You, of course, did it much better than
When you are advising your clients I think it is important for them to understand that this
is not just their "problem". You did this quite well also. However, and this
is not meant as a criticism (for I do not know how I would have done it much
differently), children of your clients should not feel as though they are
caregivers for their parents. That is too much responsibility. I think that we
all may have put too much on your son's (name was omitted) (in particular) shoulders. Children should be just that. Once again, though, I think it is difficult to balance not keeping them in the dark with perhaps telling them too much.
I think that one of the greatest problems is our society-defined roles. I am
an earner. You are a caregiver. Those sorts of traditional roles do not lend
themselves to working together in a manner that best helps anyone in such a
situation. However, I'm not sure how you would tackle tearing down centuries of
defined acting. Yeah, I know; not so helpful.
So, while this may have been a quick question, the answer is somewhat lengthier.
Well, what isn't when you ask me? I would like to reserve the right to respond
further as I ponder what I have written and give the question some more thought.
Hopefully this was of some value to you and your future business (or whatever
the purpose). Regardless, I know the exercise will assist me and us in
Take from it what you will, but my fathers opening line "You are not always one"
is very true and what is often forgotten when you are overwhelmed with pain.
When I was first diagnosed with Fibro, and until a year or two ago I did not take into consideration what the people around me were going through and how it affected them. My spouse at the time had trouble for the first year of pain symptoms (before diagnosis) and thought I was faking it. After a year, and then after diagnosis, he took it more seriously and it affected him in ways that I still do not know fully. Although we are not together anymore, partially because of the Fibromyalgia (I believe), he was kind enough to fill out a Questionnaire for me, about what his thoughts were, are. He has also been so kind to give me permission to share the Questionnaire.
A sincere thank you to him.
Describe Fibromyalgia in your own words.
Fibro in my own
words – is an medical condition wear the patient is in severe pain, very tired
and getting sleep is very annoying cause of the discomfort they are in. also
depression and mental awareness and mood swings
Do you think Fibromyalgia is an actual condition, or a scapegoat for Doctors?
I believe it’s an actual condition
Would you like an information session with a Doctor explaining in detail, Fibromyalgia? Including the symptoms, what to expect, treatment options, and how it may affect your life? If you would like a session would you like the person diagnosed with Fibromyalgia present for the session?
Yes I would so I can better understand the condition and the person
Do you believe the doctors are helpful with the care of Fibromyalgia? Please
No a lot of doctors do not believe in this and do not
really care – it’s not always constant so they think it’s a make believe
Can the doctors do more? Please explain.
It’s tough to say if they can do more – because it’s not consistent , scan does not show until it
happens to a lot more people I don’t think They will spend the time looking
into it ‘
Do you believe the medication helps or hinders Fibromyalgia? Please
The personal experience the way the doctors do it by giving meds drugs etc.,, hinders this
condition and if anything makes it worse and or even prolongs The Fibro making the
patient weaker, vulnerable and feeling useless that they cannot do anything for
themselves or for anyone.
Are you interested in alternative treatments?
How does Fibromyalgia affect your life?
It has affected my life in many ways in which I will not disclose
How does Fibromyalgia affect your family?
How does Fibromyalgia affect the person diagnosed with Fibro? explain both physical and
It has affected this person in many ways in
which I will not disclose
Do you believe you are of help? Explain how.
At times I felt I was at help and other times no – I feel cause of the uncertainty that they
would never come through this has changed their thoughts Feelings and
emotional being. So help they would try to do on their own just to feel that
they can and do not need any assistance and perform normal Everyday activities
on their own.
What would be of help to the person who is diagnosed with
Listening – being there – help – rest – building confidence assuring them they will overcome this
and be by their side – help them to do things on there own to feel better about themselves and life in general.
What would be of help to you and your family?
Would a Support Group be of help to you?
Support group would not help me now cause I’m no longer with that person
Please add any further information would like to share.
The main goal is support and understanding and being there for the person cause they are going to go through a lot and try to feel what they are going through and assure them that they will get through
this cause no one else will listen to them because they think it’s a make up condition -
Please add any additional questions you believe should be added to the
I will be posting responses from my other family members in the next week or so. I hope this helps you to see their side as well.
Setting goals can be overwhelming, unrealistic, scary, and somtimes we allow the feelings stop us from working towards the goals we dream of.
Setting the goal is the easy part, it is the planning that takes the time, energy, determination, and dedication.
Those diagnosed with Fibromyalgia have difficulty setting, planning and implementing goals. Why? We forget that the way we used to do a task, is no longer the way that will work for us.
With any goal, the first thing to do is to write a plan, set the steps needed to attain the goal. Details are needed, the steps need steps, and a timeline to complete each task.
Fibromyalgia allows us to learn, experience, and test new ways, new possibilities, think outside the box of how to do a task that once was very easy for us.
When setting a goal, a person must first come to terms with the simple fact that the steps may be more, and the timeline may be longer. Frustrating, yes, at first. The sooner that we are able to accept this fact, the easier it is for one to move on.
The second key to setting a goal, when diagnosed with Fibromyalgia, is to come to terms with the type of goal you are setting. A goal for you now, may have been a daily chore you were able to do without thinking before. For example, you need milk, before you would fit it into your day, pick it up when you could, now you have to plan it out. What is involved, getting dressed, walking to the car, driving to the store, going into the store, picking it up the milk, waiting in line, getting back into the car, driving home, walking inside, putting the milk in the fridge, and yes the best part laying down on the couch. No matter the goal, it is an important part of your life, and without the small you cant reach the big.
When setting a goal, don't set too many at once, work with one or two, that way you do not feel overwhelmed and are less likely to give up. Start with something small, most with Fibromyalgia start with either diet or exercise. Let me work with exercise, as I find this is the most common goal people are unable to complete. I picked running, many pick swimming, or yoga.
1. Pick the form of exercise that will work best for you, that you will enjoy the most, and offer the most benefit with the least hinderance.
2. Choose a final goal. Be able to do 4 classes of Yoga a week, Swim 100 laps, or run 5k. Choose a final outcome.
3. Choose the date that you would like to complete this goal. The key to choosing the date, pretend you are a 400lb person, who has been in a car accident, and has never exercised a day in their life. That way you are more likely to reach a realistic date.
4. Set the next steps. This takes some research. If you are swimming, you need to find the closest pool available to you (if you are not one of the lucky ones with a pool in their backyard). Choose a swim that offers adult only, women only, and even senior only (tell them your limitation most will allow you to join these groups). If you are choosing Yoga, find a rehabilitative class, this will allow you to have poses that are modified for people with Chronic Pain or disabilities. Some areas also offer a senior class, and will also let you join.
5. Setting the steps. Start with one class per week, pick a class that fits the schedule of your body. Pick a time where your body is at its optimal. Swimming if you are able to complete one lap be happy and just do one lap. Your body is building its energy back up, do not push it, even if you think you can do more. Also remember, you have spent energy travelling to the pool and will spend energy travelling back. The key is pace, frustrating, but pacing is very important. Yoga classes start with one class a week, and speak to the Yoga Instructor prior. Explain that you do have Fibromyalgia, and may just go into the childs pose, may get up and leave as you have to, and for many (I was one of them, still am) tell them to ask you for permission before they touch you to correct your positions.
6. Next step should be to set up rest time. You have planned to start the exercise, and now you have to plan for your bodies reaction. Have the time after you finish the exercise planned. Have a movie waiting for you, have a snack or meal ready that you can just heat up. This will allow you to relax and conserve energy when you may not have it.
7. The next steps should be planned tentatively but know that it can be changed depending how your body reacts. Decide at the beggining how you want to increase your exercise. After one week increase to 2 laps, on the third week 3 laps. For Yoga after a month increase to two classes, or a full class. Should you have to delay one week no big deal, but you are working towards a goal.
Remember on a good day, when you are feeling amazing, and think you are like your old self, and this will happen eventually, do not overdo it. If you have been doing 3 yoga classes a week, and feel like you can do one more becuase you are having a good day, do not do the extra class, nine out of ten times it will cause a flare up.Please email me if you would like a free goal setting print out.
I spoke to someone today who has had Fibro be a part of her life for over 20 years. She was looking at my website, and came across the page that offers support for the people who surround us, help us, and are there for us. This apparantly made her very upset, and from my perception angry.
I welcome all opinions, everyone has one, and respect all opinions, don't always agree with them, but try to see where that person is coming from (not always successful, but try), and will listen and learn from others point of view.
I have come across a few people who have had the same point of view and want to now address it, as any discussion can bring awareness to Fibromyalgia, and maybe help you see things from a different point of view, whether you agree or not.
Those who are diagnosed with Fibro, go through pure hell. The pain, depression, change of lifestyle, feelings of no longer in control, on a daily basis brings out a person that we would not normally become. Some of the qualities are amazing, the strength you find within yourself, the new appreciation for simple events, but with good comes bad. The mood swings, snapping at people around us, finding it harder to be compassionate for those who are around us.
But are we the only ones Living With Fibro?
Our family members, spouses, and friends, also have a loss, a new life that they have to deal with. They no longer have a loved one who is social, smiling, outgoing, healthy, active, and the person who they have known. They now have to watch us become a shell of what we were (until we get better), can no longer hug us, deal with the mood swings, us snapping at them, and the most difficult watching us in pain and feeling helpless. Just like our lives have changed, so has theirs.
The person I spoke to today, had a few simple rebuttles, some understandable to me, and some not.
The people who surround us should just be happy that they are not the ones that were diagnosed with Fibro.
If we start putting attention on them, it will take attention off the people who are diagnosed. (will address this lower)
If they love us, they should be happy to help.
Let me address these first, as there is one more point, that I had a bit of trouble with, honestly.
Our supporters are probably very lucky to not be the one who wakes up daily with the pain, cant sleep because the pain, and cannot do because of the pain. However, they do wake up everyday with a loved one in pain, they do wake up everyday with a feeling of helplessness and have to watch someone they love go through this. How does it feel to watch your mother, father, husband, wife, child, best friend, go through something that affects them to the core and not be able to do anything to relieve it? How is it to take care of someone on a constant basis and feel like you have done so little, and your life is now focused on them, that you have given up a part of yourself? To have feelings, thoughts, and actions that you cannot express out of fear of hurting that person. Wouldn't a place to express yourself, discuss with people who are in the same position with you, and a place to just go ahhh, its okay to think and feel this way do a world of good not only for them, but for you. Please do not get me wrong, these wonderfully strong, caring, patient people who are around us do not regret helping, being there for us. For the most part, that is where they want to be, and the feelings they have do not negate their actions or the compassion and love where the actions come from. They just need a place to express and let the feelings go.
The last point I received was this;
Fibro was compared to Cancer, which I have done myself and have heard on many occassions. In this conversation, it was explained to me that Cancer is a very known disease, that is well funded, advocated for, and affects so many people and yet you do not see support groups for the families, friends, and spouses.
First I am going to strongly disagree with this statement. There are support groups for people who have lost someone to Cancer, or has someone who is fighting Cancer. I do not know where they all are, but I do know where my local one is and should you need one by you please contact me and I will research it for you.
Whether it is MS, Cancer, Diabetes, no matter what the syndrome, disease there should be a support group for everyone, especially for the Supporters. Why? The education, a place for them to learn, vent, express themselves, will bring nothing but benefits to both sides. A person who will understand what you are going through, a person who may be able to be more patient, and calm as their frustration, anger has been released elsewhere.
The last point, or opinion I have is this, any attention to Fibro whether it is for the person who was diagnosed, or the people around us, it is good attention. Any attention to Fibromyalgia will bring more research, funding to find a cause, and most importantly awareness and education for all those involved with Fibromyalgia.
Very simply, whether you were diagnosed, or supporting those diagnosed, we are all LIVING WITH FIBROMYALGIA.
My grandmother, my only grandmom that I had known my whole life. In fact, she was my step-grandmom, but she was my grandma. Two years ago, she was diagnosed with Cancer, for the fourth or fifth time in her life, and with four different types of Cancer. She had weeks to live. I had just gotten off the drugs, was in severe pain, had two young children but Grandma needed help, someone to watch her, help her with getting around as it progressed, especially the Brain Cancer. I drove 90 minutes at least twice a day to cook, be a companion, sleep through the night and eventually keep watch at the Hospice. Up through the night, reading to her, and I loved every minute of it. I definately did not get needed sleep, but I survived I worked through it, and I did it without thought. I went into survival mode.
Survival Mode happens to most. Something happens, like a death and you turn into a mode that will get things done, and just get through the time, you continue to do what you have to do.
What happens when Survival Mode becomes the new way of life?
When you are diagnosed with Fibromyalgia, you have already been in Survival Mode, and you are hoping until the Doctors are able to do something to help. If there is help.
Getting up, getting dressed, eating, moving, any action, thinking all becomes part of the survival mode. You slowly start to do just what you need to do to get through the day, what you need to do to just survive. Is this living? What happened to living, to laughing, experiencing, socializing, doing? We, you forget that it is suppossed to be more than just surviving.
My son, the most honest being I have ever met (he even tells on himself), came to me yesterday and said "mommy we actually do stuff now, when you are on the couch you are laughing at me (yes I do laugh at him), you dance, we can do stuff now, thank you" Even the little things, watching the stars, playing a board game, going to a movie theatre, is living.
When was the last time you started to live, did you something you loved, and not just survive?