Fibromyalgia - Both a Blessing and a Curse

On a Facebook fibro support group several people said that they felt blessed to have Fibromyalgia.  This created quite an uproar and they were called unkind, crazy, etc.  I didn't have time to stay online for long that day.  I offered a suggestion to solve someone’s dilemma they had posted about and signed off the computer.  When I got back on the next morning, the discussion had grown to 66 comments.  As I started to write a response I realized that it would be way too long to read as a post so I moved here to my blog where I say what’s on my mind.  I think you’ll find that I’m pretty passionate about this.

To the group of people that say that Fibromyalgia is not a blessing – I agree.  It is not a blessing that I had to stop work at age 52 after I had just gone back to school and gotten a degree that would allow me to find a better paying job.  It is not a blessing that we struggle because we only have 50% of my income.  It’s not a blessing that when I first became ill I had to try and talk my hubby into going and doing activities we had planned but I was unable to do.  It’s not a blessing that I had to give up my duties as a Eucharistic Minister at my church for several years.  It’s not a blessing that my cognitive function had diminished to the point that I couldn't remember things from one day to the next.

However, there are ways to turn all of that into a blessing. It’s how we look at the life that we’ve been given. It’s a blessing that I can no longer work because as career driven as I had become, it would more than likely destroyed my marriage.  My marriage is worth more than any paycheck or the luxuries that it would provide. It’s a blessing that my employer had paid for the Long Term Disability insurance so that we do have 50% of my income while I not so patiently waited on my Social Security Disability hearing.  It’s a blessing that when the economy fell and my hubby had to change careers and go into retail to find a job, I’m home to spend his days off with him. If I was still working Monday - Friday, 9 to 5, we'd never have the same days off. It’s a blessing that I have learned to encourage my hubby to go do things with the guys and not worry about me being home.  We appreciate each other more when he comes home.  It’s a blessing that when I could no longer serve as a Eucharist minister, a position in the altar guild opened up so I’m blessed to be able to prepare the altar for Eucharist.  I’m blessed to still be able to serve my Savior and my church.

I am blessed because the Lord put me and my now best friend on the same Yahoo group at just the right time for us to meet.  I’m blessed to have a best friend who loves the Lord, who has Fibromyalgia, who loves being a homemaker like I do and who loves to sew and is happy being “domestic”.  That’s the job description I have now and I love it and feel blessed for the opportunity.  I blessed to be a homemaker.  There are many days when I can’t clean or cook.  But I can be here to offer my hubby a cold drink when he comes in at the end of the day.  I am blessed because I have the time to sew for family, friends and charities. 

I feel blessed because "all" I have wrong is Fibromyalgia, Chronic Fatigue Syndrome, Chronic Myofascial Pain, Peripheral Neuropathy and severe edema in my legs and feet.  I am blessed because unlike my BIL who died of cancer or my friend who died of a brain aneurysm, I am here to witness the birth of my grandchildren and to watch them grow up. I get the joy having my young granddaughter ask me to teach her to sew and my  grandson asking me to teach him to bake after watching me make hamburger buns one day.  I am blessed to see my our goddaughter run to me down the aisle at church with a huge grin on her face.

I'm blessed because 11 years ago this week, I met the most wonderful man who loves me for who I am, whose heart breaks that he can't do more for me.  I am blessed with two wonderful children who do all they can to help by cleaning my house and helping with projects that my hubby can't get time to do.  I am blessed that my grandchildren understand that MiMi’s muscles don’t work right and they find things for us to do together that will be easy for me.  I am blessed to have friends that can look and me and know that it’s not a good day even when I tell them it is.  I am blessed that I am able to use the computer to tell others that there is hope.

There is hope for us and we cannot give up.  Giving up is what causes our life to fall apart.  Giving up is why we lose our happiness.  Giving up is what causes us to miss out on the pleasures of life.  Giving up is when we refuse to keep going by refusing to use canes, walkers and wheelchairs.  Giving up is when we are too proud to allow friends and family to help us.  Giving up is not the answer.

If you pain is too bad for you to function and your doctor is not willing to prescribe the stronger medicine you need, find another doctor.  It’s your right to do so.  If you are worried about becoming addicted to a narcotic pain reliever, get over it.  If that’s what it takes to manage your pain so that you can enjoy life, take it. There’s a difference between addiction and it being a medically necessary drug for you to maintain your life.  You aren’t taking them for “fun”.

Use those canes, walkers and wheelchairs so that you can go out to dinner or the park with your family.  Don’t be ashamed to have a handicapped tag or hang tag for your car. Take your medications with you and pack a small cooler with snacks and something to drink. Plan several days ahead for an outing and limit your activity so that you have the energy to go out.  Yes, you may “pay” for it afterward but what’s worse – feeling sorry for yourself because you couldn’t go or being tired with more pain but with the wonderful memories of the day you had with family and friends.

All I ask is that you think about it.

Grandchildren, Travel and Pain - They Can Go Together. If You Plan It Well

We live about a three hour drive from our oldest three grandchildren and about a two and a half hour drive from the youngest two.  It goes without saying that they are the apple(s) of our eye(s) and we miss them terribly.  Up until now, it's been really hard for me to visit the oldest three  I've still not visited the youngest two although Grandpa made the trip last week.  I had not seen the oldest three in at least six months.  Since my pain had stayed in the Level Four to Level Five range for most of the month (I even had some Level 3 days!), Mr. Supportive and I decided it was time for me to come see the oldest three.  I posted about Mr. Supportive's theory that the heat was really getting to me plus the depression from both the Fibromyalgia and not having seen my grandchildren in so long wasn't making dealing with the Fibromyalgia any easier. I was in the delivery room when each of them were born and even cut the cord of my youngest granddaughter.  We seem to have a lot closer relationship than some of my friends do with their grandchildren and I want to keep it that way as long as I can. I've always had a close relationship with my daughter and I missed seeing her.  She's been up several times in the winter and spring to help with deep cleaning I can't physically do and also helping me get rid of a lot of clutter in closets and kitchen cabinets.  She's really brutal!  Monica has watched so many episodes of TLC's Clean Sweep that she sounds like Peter Walsh, the organizer on the show.  She is good enough at it that she could to it for a living.

We decided that I would come down so I went on line and made a reservation for the City of New Orleans and was able to specify that I wanted a lower.  I am so glad that I'm able to ride the train from Memphis to Jackson.  It's the only way I can make the trip without a lot of pain.  If we go by car, I end up having to stop every hour or so to walk around so that my muscles don't get stiff.  Sometimes stopping doesn't help.  On the train, I can get up and walk around, keep my feet elevated using the foot rest, use the restroom, get something to eat and most importantly, I can stretch out and take a nap.  Usually, I take a nap all the way to Jackson.  Since there are 110v outlets beside each seat, I am able to plug in my CPAP and get good sleep.  

This trip I was finally able to get a Lower Level Coach Seat.  I was really excited because they have always been sold out when I traveled. Having my seat on the same level as the rest room was awesome.  It takes way more effort than I have to give to get up the stairs to my seat and back down again. Not having to deal with that made it so much easier.  The train trip can push my pain level up but this time it didn't  and I know it was not having to walk the stairs that made it easier.  When I got on the train, my pain was Level 4 (my "normal") and when I got to Jackson it was a Level 5. We came straight to my daughter's and after saying hello to everyone, I took a good nap.  When I woke up, my pain was almost back to a Level 4.  By the next morning, I was at Level 4 again.

I promised my oldest granddaughter, Anna, that we would sew today so I'm off to do that with her. It makes me so happy that she is interested in learning this timeless art. The rest of this week I'm going to talk about how I've explained to the 7 and 9 year old what is wrong with MiMi and why I have to take more naps than they do.  It is my hope that others will read this and then take the information and apply it to how their family deals with Fibromyalgia.  We found that even at 4 and 6 they were able to understand basic explanations.  For instance we started out telling them that my muscles and legs didn't work right anymore so I couldn't walk and run like I use to.


Grandchildren can be taught about your pain and limitations.  Doing so rather than ignoring the situation will make a huge difference in everyone's happiness and enjoyment of your time together.

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I've decided to keep a photographic record of how my Lymphedema is doing each day. I'm putting it at the bottom so that it is easy for those who do not have it and/or have a weak stomach can avoid it.  The picture shows how the skin across the top of my feet is so tight that it's shiny. I keep them elevated as much as I can but in hot weather it doesn't seem to do much good.  I'm drinking lots of water but it doesn't seem to be helping.  Thankfully keeping them propped up does keep the pain down.  I am most concerned about the way they are a light red color from my shins down.  I've also noticed a place like that on my left leg just above my knee.  The light red color is a sign of cellulitus so I'm keep a good watch on that.  I forgot my tape measure and my 4 year old granddaughter decided to cut her mom's into little pieces. Tomorrow I'm going to get a tape measure and I'll begin recording the size of my legs.