There is a lot of information I have about Fibromyalgia and I will post it soon. But tonight this is just a post about the pain it physically causes & mentally causes and how it effects relationships.
There was a time when I used to fight the pain. I went above and beyond my limitations both psyically & mentally. Some of that time it was because I had to – there was no one else to help, the kids were young & so was I – a young mother of two that was yet to be diagnosed but knew something was wrong. Once I was diagnosed and found out that there was no way to fix it – I went into denial. The doctors had to be wrong – I must have something else – there has to be some surgery- some way – something – anything. I went to 11 doctors before I finally admitted that this is it and this is my life.
I will be in pain. I will have to rest when everyone else can keep going. I will limp because of the huge knot on the left side of my lower back. My shoulder will hurt and grow a calcification because I think (stupidly) that resting it extra will help instead of make it one more pain to deal with. I will not be the swimmer I once was anymore. I will never do a 60 mile walk again. I can not rollerblade anymore. I will feel the rain coming before anyone sees the clouds on the horizon. I will have to nap even when I do not want . I will need help with most everything and I will live in fear of another accident that will cause a new pain that never goes away. I will have to take medication for the rest of my life and people will think that what I have is not so bad just because it will not kill me. So there is the good news I may live to be 100 and still in pain. That is my lot in life.
It has been said more than once that these problems and this pain would not have been given to me if I were not strong enough to handle them. I have thought about that and also about my feelings on reincarnation which says basically the trials we go through in this life are the lessons we need to learn. Some days like today I just want to scream “NO I AM NOT STRONG ENOUGH – CAN’T YOU SEE THAT?” or “OKAY- ENOUGH LESSONS- NO MORE PAIN PLEASE.”
I know there are people who can do many of the things that I can’t even though they have Fibro but I have tried and I have pushed and I have learned that they have different limits than I do. I have all of the trigger point. I have clusters of hard knots on most of my body. Some days it is hard to get out of bed – okay well – most days it is.
This is not a kind condition. Not to the person who has it and not to those who live with them and have to watch the one they love suffer.
And no there is nothing I can do besides what I am doing to make it better. I can not just get over it. The more I do the better it will get does not apply here.
I am not lazy. It’s not that I do not care. It is just that everything is so hard and colored by a haze of pain. And I hate it. Some times I still think that maybe the doctors were/are wrong – then I remember that I have to face it and accept it.
The problem is that I do not know who I am anymore – who is this person that can not just do it all by myself? Where did that person go? Some days – like today the pain is so much that I just get lost in it. But when I come out those questions are still lingering, whispering in my head. “Who are you – now?”
I wish it didn’t effect anyone else in my life. I wish I could make plans and stick to them. I wish I could be independent like I once was. I wish I could walk in the rain like I use to. I wish I could just enjoy shopping at a store and wondering the racks with no pain. I wish I could accept that that person is not me anymore. So many wishes.
How strong can someone be? How strong can those who love that person be expected to be? Why me? Why you? Why isn’t Fibro the same for all of us who have it?
All I can say right now is that Fibromyalgia is a cruel “condition” and I pray if you do not have it that you never do and never have to know how cruel it really is.
Living in a House of Cards: Musings from the inside 
Heather, no words will suffice. You are so young and one of many who suffer from that awful affliction. So, if you haven’t already, I’d look into a support group where, tho, all suffer at different degrees; there is understanding. It’s not easy to suffer from “unseen” afflictions. You may have overheard some, unkind remarks; from unkind people, when someone parks in a disabled space…with a proper tag, tho they don’t appear to be disabled, may be suffering from a disease of injury, not readily apparent. Even some doctors, are less than sympathetic to “pain” that they can’t get a handle on. There is some reason to believe that your disease, is genetic, in nature. You are absolutely NOT being punished by anyone for anything you or anyone else has done. That’s just hogwash, pardon my barnyard French! You are depressed, for sure…and that you certainly do need both physical and medical help with. I’ve been living with pain for so long I can’t recall when it started, and injuries only caused things to get worse…tho, I “look” just fine. I have to shop at the little stores here, who charge a lot, rather than try and go out of town to large stores and save money; because I hurt so bad I can’t think, when I get there. Tho I know it doesn’t help anything, I can sympathize with you. Let’s hope and pray the Rx companies can get off their bottom lines long enuff to try and help somebody, instead of using them as guinea pigs, to further their funding efforts. The health system, as it is, isn’t serving anyone who really needs it. It’s a shame that they have more say in the matter, than the ones who need to be heard. So, I guess what I’m getting around to, is this..I have a “thought of the day” turned to the page that says to me..”Don’t let what you Can’t Do..keep you from doing what you CAN do.” You can call attention to the problem…and get together others who also suffer..in one big collective effort to push for a cure. A constructive way to use that thorne in your side…let it make you mad enough to fight against it; and, not let it defeat you.
You might also go to http://www.dailyguidepost.com/prayer – they have some mighty prayer warriors..and it’s anonymous..just fill in the little box and click.
Hi Sherry,
On my good days I know you are right. On my bad days it all just seems too much. There are many people including doctors who do not believe it exists. I have had many encounters with such doctors and if I hadn’t kept fighting I would not be as well as I am. I particpated in some of the pharmaceutical testing for new ‘cure-all” Fibro drugs they were not a fit for me but there are many that they do help and for that I am grateful. With Big Pharma paying attention to this condition now better meds or possibly a cure will be found. When I started my journey there was no one even trying so most days I remind myself that what I have been through has made it easier for the people who have been diagnosed after me. I have had some horrible things said to me by doctors and hopefully through my pushing less others will experience the same. I am part of an online support group and plan to turn this site into one as well. It is genetic and my doctor gives me print outs from medical journals – one of which says that it is a neurological condition even though the medical establishment at large considers it to be something a Rhumatologist should handle. I see both. I am taking the most recently approve (by the FDA)medication for Fibromyalgia. It helps but it does not fix. At least there is more research now. Doctors are taking it seriously. I was depressed you are right and some days I will be – it is unavoidable – some days it won’t be so bad. Some days like yesterday I am just angry about it. Thanks for your words Sherry & for the link to the prayer page. I know I will have better days. I just have to find that acceptance of myself and then there will probably be more good days than bad. ~ Heather
Hey Heather,
I know several people who have been diagnosed with Fibro. My mother in law for one. She spent over a year unable to work, pretty much unable to leave her apartment. I know they told her it could be brought on by stress. She is now up and moving with no more symptoms. She refused to take the steroids they prescribed. I questioned at first, because why would you not take anything to help the pain. When the pain was not so bad, we told her she should try to get out, because of her depression. We purchased a year membership to they YMCA. She started out in water aerobics, and is now in all different classes. She strongly believes that the body movement helped drastically. I know everyone is different, but that might be helpful…
Hi Carrie,
Thanks. I don’t take steroids either and it was a good call on your mother’s part not to because they do not work with Fibro. Steroids are for inflammation and there is none with Fibro. What I didn’t say in my post last night is that I have nerve damage along with the Fibro as well as some other issues. So yes I do need to get moving to some extent but it has to be under the care of a therapist trained for both Fibro & Nerve problems. What I really need to do most right now is accept that who I was is not who I am, because I keep getting stuck on “…but I used to be able to…” or “I should be able to.”
Thanks again,
Heather
Hey,
If you aren’t in chronic pain there is no way for you to understand what it is. That is why I watch House. It must be written by people who know people in chronic pain because no one understands what House is going through, just so they don’t understand what we are going through.
I am sorry you got this from me and am sorry it manifested so hard at so young. The only thing I can say is I love you and your father loves you and your sister loves you – as you are now, as you were and as you will be.
Love,
Oh Mom, I do not blame you for this & you can not take responsibility for me having it. It is what it is and it will be what it will be. It manifested in me at such a young age simply because I was in so many accidents while I was in my teens & 20s or even because I had those two episodes of strep throat with 105 degree fevers when I was 22 that put me in the hospital. It is the one thing science has been able to prove about Fibromyalgia that and accident or severe illness will cause it to manifest if you are predisposed to it. I am just having a hard time accepting that it is not something I can overcome or beat into submission. I a going through the Grief Cycle/Stages of Grief (http://www.greaterswiss.com/mourning.htm). I have reached the Anger Stage. I know this cycle is usually used to refer to someone who is grieving over the loss/death of a loved one. In a very real sense that is what having Fibro is – it is a death of who you were. I believe it is the same for someone with MS or Lupus though I have not heard it said about any of these diseases/illnesses/conditions – I know it to be true. I have to accept the death of the person I once was and am no longer and once I do I hope it will be easier to live with. I am going to do a specific blog about it so others who are newly diagnosed or feeling lost after years of fighting it will know they are not alone and that what they are going through is very real and normal under the circumstances.
I loved the TV show House from the very first episode for exactly the same reason as you do now. I do not necessarily expect others to truly understand what myself or anyone else with Fibro is going through – I just have three things I hope to come from this blog: 1) That the people who live with and/or love someone with Fibromyalgia can have a clear picture of the pain and struggle and reality of this disease (it is alternately referred to by the medical establishment as either a disease or a “condition” far as I am concerned it is a disease). 2) To let others going through the same daily struggles know they are not alone and 3) To help myself through the process of acceptance and record my good day when they come and my bad days as they are so when those bad days seem like more than anyone should have to bear I can be reminded of the good days and know another good day will eventually dawn again.
If I can do nothing else with this gift I have been given of being able to express myself & my emotions then at least I offer comfort and care to those who need it.
I am indeed loved by many people and that too is a gift that others may or may not have or may not be able to see that they are through the haze the pain causes. I hope to remind them or be the person who offers it to them.
I love you. Heather
Good for you. You are a great writer.
Love, Mom
Mom is right, you are a great writer!
I’ve had the fibromonster for 6 years now and I still am trying to get over who I used to be. It’s difficult. It’s getting easier and I’m much more accepting of who I am now. I just focus on the day and do what I can.
Gentle Hugs
Thank you Lindsay! I just realized who this message was from – my buddy on Opera!
It is truly a process and I am going to do a post with an overview of my journey thus far & share the insider info my doc gives me. I am a fighter and I was beginning to forget that there for a bit. As a fighter I will no go quietly into the night but I now understand that going too far beyond my limits will only make me worse and unable to fight which is like cutting off my nose to spike my face. I also realized that it is time for me to be honest about it – something I haven’t been & is not easy. But we all get there in our own time & I am getting there. I can only hope my story will help others along.
Thank you for your support because just as I hope to help others your support helps me. Gentle Hugs…Heather
Heather!!!!!!!?
I never knew that you had this! You never certainly talked about it in Miami, or ever let any of us know that you were in pain. Gosh. Keep the fight going. you are an inspiration to alot of people out there.
Love, olga
Hi Olga!
No, I spent a lot of years not talking about it at all. It was so hard to explain and in those early years when you and I were together all the time I was still trying to find out what was wrong with me. Several doctors were telling me that it was all in my head. So imagine…I didn’t want to tell anyone. It’s really only been the last few years that I have spoken openly about it at all and I am learning to be more honest about it everyday.
Love ya always,
Heather
P.S. LOVE the mushroom icon. :O)