A Good Book Review, and Some Thoughts on Fibro

This is a good review with pros and some really good cons about the book, from someone who lives with fibromyalgia.  It got me thinking about my life with this illness.  When I first became ill, I had fatigue.  So much so that driving home from work I would feel almost unable to sit upright in the car.  There was just not enough energy to hold my body upright without really fighting to do it.  I lost all my muscle strength withing a few weeks, I think.  Could no longer go to the gym.  Could no longer buy heavy groceries like juice, because I could not carry them up the stairs to my apartment.  Had to give up the night courses I signed up for at the local college, because I was just too tired to go.  Had to stop taking my laundry to do at work (group home, big house, washing machines) because I could not carry it up and down the stairs.  Next I lost a lot of cognitive ability.  My short term memory evaporated.  I could not remember what I was told or what I did even two or three minutes later.  Not good when you have to give out meds and are responsible for a bunch of teenage girls.  Had to give up my job.  Got tireder and tireder and weaker and weaker.  Had some general all-over pain, but nothing too bad.

Then a few years later, I started having whole days where I had shooting pains all over my body.  It’s my calf, no it’s my upper arm, no it’s my back and on and on.  I would have to stay in bed and just try to sleep through it.  Later on, I developed serious pain, where I hurt everywhere, but nothing was actually wrong.  I used to liken it to phantom limb pain.  Nothing is even there to hurt and yet you still feel pain.  If you twist your ankle, it hurts, but over time it heals and the pain stops. With fibro, your ankle can be fine, but it hurts for no reason, and it never stops.  Ever.  Over time, because you are unable to be as active as you were, your body just gets weaker and more out of shape.  So you develop other problems to go with the fibro.

I remember one day at the beginning, where I got up, showered, got dressed and presentable, got my purse, coat on, and keys in hand, put them all down, and went back to bed.  I had used all my ‘spoons’ just getting ready.  Now, I frequently use all of my spoons just taking the shower.  If I even have enough to do it in the first place.  Assuming you know the spoon theory, which is you start out the day with so many spoons, and each activity uses a certain number of them, and when they are all used, you are done for the day. The thing is, some days you wake up with no  spoons to start with.  Or as I read somewhere, “All my spoons must be in the dishwasher”.

I had to stop going out on my own, because I could not longer walk to the library and back,for example.  It’s a couple of blocks away, btw.  I stopped riding the bus, because I couldn’t be sure if it was the right bus or where it was going to let me off.  I got stranded standing in a snowstorm once, waiting for another bus to come.  Dial-A-Ride, which is a service for elderly and disabled people, is completely unreliable and left me standing (I do not do standing well because major pain) in the snow for over an hour, and I have had to walk quite a distance uphill in the snow to get to a phone and call to see why they never came.  My daughter gave me my first cell phone after this happened a couple of times.  So my world got smaller and smaller, my body got weaker and weaker, and my life just pretty much ground to a halt.  Fortunately, I am a great reader, so do not just sit here surfing channels or staring at the walls.

I met my friend Tess  ^  several years into this, and she very kindly offers to drive me to appointments and takes me shopping and to lunch.  Again, it all depends on how many spoons I have that day, and how much pain I am in, and I have had to cancel at the last minute many times.  I have had to cancel appointments, my homemakers, visits to and from friends at the last minute many times as well.  It took a while for some people to understand that it wasn’t that I just didn’t want to do whatever, I actually was not capable of doing it.

I went from an active life, a job I loved, going to the gym, visiting friends, to a life of isolation, pain, and so much fatigue that some days it’s all I can do to hobble to the bathroom.  If I am lucky, I get to go out out maybe once every two or three weeks, and then only if a friend is driving us somewhere.  I can’t really cook for myself anymore, I need someone to clean, and do laundry and shopping and taking the trash out.  So if anyone thinks that fibromyalgia is not life-altering, like the book in the review seems to think, they truly do not have a clue.  I comment on the vid page about why I think doctors don’t really get it, too.

I’m fortunate that I seem to have been born with the happy gene, and can still find things to enjoy every day, and do not get mired in the misery that it would be very easy to get mired in.  I am not a ‘what if’ or ‘if only’ person, because I just think that’s a waste of whatever small amount of energy I still may have.  I have my cat, and my laptop, and my streaming services, and best of all, my Kindle.  Best, best, best money I have ever spent.  I am on my fourth one, I think.  They get used for sometimes hours every day, so tend to wear out eventually.  There are tons of free books you can get, there is a library extension that will tell you if the book you are checking out is available to borrow for your Kindle.  Click and it’s there, so long as you turn on the wireless  LOL  You just need a library card. Oh, it’s called ‘library extension’. Clever.  There is Kindle Unlimited on Amazon Prime, but you have to pay for that over and above the Prime fee.  I do.

This is not to say I don’t have my down days, because I sometimes do.  I feel alone, abandoned, useless, hopeless, what’s the point.  Then I get over it. I am fortunate in that, because that is a lot of people’s day to day life with this horrible, life-altering illness. I aim to be upbeat in my blog, when I am not just being angry at the stupidity that is running rampant on my planet and in my country especially, and I never want it to seem like I am asking to be felt sorry for.  I am not.  I hate, hate, hate when I go out and run into someone who is just so condescending. ‘Oh, you poor thing’ kind of attitude.  Get thee away from me. Please!  I am not a poor thing.  I am a fighter.  I am not beaten, nor will I be.  So there!  Ha!  And all that jazz as well.  🙂  Done.  Here’s the review:

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