fibromommy

I have had a few things going on lately.

First…out of pure desperation…I started writing a children’s book about fibromyalgia, talking in simple words and on a child’s level.  I wrote it…hoping to get it through to my daughter, who is two years old, that her mommy hurts all the time and when she climbs all over her it makes mommy cry because it hurts.  I try really hard not to let my children see me cry.  I don’t think that is something they should have to witness on a daily basis…and maybe not even on a daily basis but on a regular basis.  As much as I try not to let them see me cry, there are times that my fibromyalgia has overpowered me on this and made it impossible not to cry right at a certain moment, but when that happens, I try to either get away from them for a moment so they don’t have to see it, and if I can’t…pull every bit of strength I have deep inside of me out to stop the tears.  I know it sounds silly, but it is hard to stop the tears once they start, and when I am in a ton of pain, pain that brings me to tears, the crying is hard to stop.  I can’t seem to get a handle on it.  I feel nauseous, and I feel like I am going to hyperventilate, because when the pain has brought me to tears, it scares me and I have a slight panic attack.  Anyways…I was tired of having to fight this incredible urge to cry, and couldn’t seem to get it through my two year olds head and I couldn’t get her to sit still for long enough and when she would sit still, it was like it went in one ear and out the other without taking a detour to the brain first.  lol.  So, I wrote a little book about fibro in my sketch book.

I’m pretty sure I have mentioned that I am getting back into my art in my past blogs.  I am writing this book and drawing the illustrations for each page that matches the story line for each page.  I started it in my sketch book, so I could have it all together to pull Ruby up on my lap and tell her the story.  The story is about a 4 year old boy, named after my son, talking about what fibromyalgia means to him and how hard it is to say AND understand, but that he is his mommy’s big helper and he is trying to help mommy with his little sister.  I have both of my kids names in it, and they LOVE it that I am writing a book about them, and their mommy and daddy.  I am not going to say that it instantly made Ruby understand me when I tell her she hurts me, but it is working.  We have read it a couple of times and now when I tell her that mommy hurts really bad today and her fibromyalgia is making it hard to get up out of her chair and clean up, I can see something click in her.  She seems to get it a little better, I still have to remind her about mommy’s fibro, but she is getting better about picking up her toys and she is getting better about bringing mommy things and throwing her own garbage away for me, so she makes less of a mess.  She is also getting better about not rolling and climbing all over me, she is actually learning to sit still when she sits with me.  I say that she didn’t get it right away because I have to remind her, but now I don’t have to keep her completely off of me when I am in a flare.  A gentle reminder that she is hurting mommy and her fibromyalgia is making mommy hurt bad and she sits back down.  My kids are great snugglers, and love to have a book read to them, but I have found with little kids, when trying to read a book about something such as a fibromyalgia or even other learning things, it has to be short and sweet, simple and to the point…make the book too long and they won’t want to sit through the whole thing.  I haven’t tried having it published yet, because I am in still in the drafting process, but am going to look into that as soon as I get closer to finishing it.  I am also going to write a quick note to parents or whomever is reading the book to the child to explain the book…and why I decided to write the book in the first place.  I am going to do an  “About the Auther/Illustrator” Page as well and give a short explanation of me, my illness(if you can get quick about it…it’s rather complicated), and being a mother of toddlers with a chronic Pain Condition.  I have showed it to several people and have gotten such great responses that it has really gotten me excited about it.  I don’t really know where to go for publishing, but I am going to look into that as I finish.  If I am successful with this book, I might try to do other children’s books and maybe not necessarily have them all be about fibromyalgia, but about things kids are interested in.  Maybe an alphabet book, a number book, an animal book…the possibilities are endless and I love to draw and pretty much maintain a child-like mentality…so I may have found my niche.  I am going to keep my fingers crossed that this goes well and I don’t meet too many road bumps.  I tend to get discouraged easily.  I almost stopped writing here on today.com because a family member I hold close to my heart had told me that people didn’t want to get forwards from me about my blog several times a week or month.  I had actually quit writing here for a while, and then decided, after emailing the rest of my email recipients without anymore negative reactions, I decided to continue to blog and continue to update people when I blog and they could decide on their own whether or not to read them.

  I have my online support group of amazing fibromyalgia suffering/fighting/refusing to let it beat them down for good, women.  That group is on www.cafemom.com, and the link to the group itself is http://www.cafemom.com/group/24963/  .  The only downside to this is…you have to be a mom(with kids at home or not…that doesn’t matter)…hence the name of the site…cafemom.  The ladies in the group are amazing.  I am an admin of the group…it is not something I get paid to do, it is something I was asked if I wanted to do, and because I loved the group so much and had already dedicated my time to the group posting and adding advice or support, I decided to say yes.  A decision I have yet to regret.  The women in that group have gotten me through some really rough times in my life, when even the most supportive person in my life has let me down, the ladies have been there for me.  They will offer up a prayer for you and they will offer advice.  The best thing about it is nobody judges you…and the ladies ALWAYS understand what you are going through, because if they haven’t been in that situation, they may have been in a similar situation and if they have been in that situation they offer up what worked for them.  I will probably never leave the group…they keep me going when I feel like I can’t…and don’t make me feel bad when I really can’t get going, instead…they applaud me for realizing that my body needs rest and I am no good to my family when I am down and out and the only way I will be of any good to them is to take care of myself first…and won’t make me feel guilty for sending my kids to the neighbors while I lay down and try to rest my aching body. 

I ran into a fellow fibro-ite that I used to babysit for in my pre-fibro days and back when I only had one child and thought being a parent was hard…lol…I wish it was as hard as it was then, NOW…what I wouldn’t give for those pain free, less stressful days.  The lady is a dear friend of mine and my mother’s(who also has fibromyalgia).  She and my mother had once worked together in the OB unit at the Hospital in our town together, she was a nurse and my mother was a CNA.  They worked overnight together quite a bit and had discussed getting a fibromyalgia support group going in our local area.  They had great ideas for it, but both had so much going on it was hard to get it up and running.  My mom had told me about this plan a few years back, when they had discussed it, but told me how public speaking causes her anxiety so she didn’t want to be the one up talking to the group to get the ladies started and whatnot.  Well, my dear friend and I had our usual “fibro talk” and then got on the subject of a support group again, and we have come up with hopefully a location, and an idea of what to bring up for discussion in the groups.  We are going to make flyers and hand them out all over…there are so many people in our area affected by fibromyalgia that are fighting this business and don’t have a way to vent or get advice or sometimes…some of them lack the proper support, that’s what this group would be for.  We also talked about inviting people who aren’t dealing with fibromyalgia, but have loved ones(friends or family)into the group as well.  So, maybe a wife could bring her husband to the group, so he could ask questions or even voice his own concerns about what fibromyalgia is going to do or has done to their life as a couple or as individuals, because as much as we would like to think it is, fibromyalgia is not ONLY about the person experiencing the fibromyalgia personally, but it affects those people that are close to them as well….husbands, wives, boyfriends, friends, co-workers etc….anybody that has a direct impact on the fibro sufferers life will be welcomed into the group.  We were thinking of doing it once a week or once every two weeks because as most people know, fibromyalgia causes outings to be difficult, so only doing it once a week or every two weeks, makes it easier for people to attend.  We don’t have set dates and don’t have a complete set up…last night was just a discussion about what we would like to do…nothing set in stone.  If you would like to be a member of our support group here in town then please by all means…get a hold of me either through here or my email and I will let you know what will be going on and when the meetins will get going.  If you have discussion Ideas….email me….any suggestions or questions please feel free to get a hold of me and let me know what you want to do.  If you want to help or just attend, and keep in mind you do NOT have to have fibromyalgia to attend, just want to KNOW more about it so you don’t accidentally say something to hurt a loved one…not knowing it is a hurtful comment…or just to offer support to a loved one, by going with them, you are showing them you care.  That in itself is extremely wonderful to a person that doesn’t feel like they quite belong in the everyday world…because the illness causes so many obstacles that others might just take for granted. 

 Even the most understanding and supportive person( and I am thankful that I have a lot of supportive people in my life)can at times, unknowingly say something hurtful or uneducated to a fibro sufferer, because the truth is, unless you actually are living with fibromyalgia taking over your body, you will never be able to fully understand the illness.  It’s not anybody’s fault that doesn’t understand it…but I say that from experience.  My mom has fibromyalgia, I’m pretty sure I have mentioned this before in my past blogs, but as much as I tried to help her and be there for her and do the physical things I knew caused her pain when she did them, I didn’t really understand it.  I read a little about it…and had actually joined the fibrosisters in hopes of understanding my mom and her condition.  Also, as much as I hate to admit it, I was one of those ignorant ones that thought to myself(but I don’t think I ever told my mom until I had been diagnosed with it)I thought, “I wonder if this stuff is as bad as she makes it out to be someday”.  I told my mom about those thoughts later, and apologized to her for even having those thoughts.  Thankfully she is an amazing and forgiving woman and has the world’s biggest hearts.  I would never wish this stuff on anybody, because the truth is…just because I don’t look sick most of the time does not mean that I am without pain.  Just because I put make up on and curl my hair, does not mean I am without pain and just because I am smiling and laughing, does NOT, by any means, mean I am without pain.  In fact, I live with pain all over my body, every single day of my life. It’s hard to believe, because you don’t see it…I don’t have big bruises I can show you,  I don’t have crutches and a cast on, I don’t have a wheelchair or a broken arm or other part of my body.  I look healthy and I look just like a person who is not suffering with everything I suffer from.  I say that because pain is not my only symptom…their are many more…but I will save that for another blog, another day.  The thing is…people with High Blood Pressure are not questioned, but they are believed more easily than a fibro sufferer.  People with Diabetes are believed more easily than a fibro sufferer.  It’s maddening when people tell you something that doesn’t seem hurtful to them but it is to you.  High Blood Pressure and Diabetes are both Chronic illnesses.  Fibromyalgia is a chronic illness.  Why is it easier to believe people with High Blood Pressure or Diabetes…most of them look normal too. 

That is my rant and rave for the moment…thank you for taking the time to read my blog today.

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