Sooooo, I thought I’d go on a little vacation and relax. What the hell was I thinkin’?? I worked my ass off all last week in the office leading a staff meeting (remember that was my 70 hr work week) and then this week was the week I took vacation. Good idea? Ummmm, hell no! I am doing my best to relax, but I am in the most excruciating pain ever. Can y’all say F-L-A-R-E U-P??? Say it with me… FLARE UP!!
OMG! As my daughter says to me all the time as she rolls her eyes at me. This is really painful. For the first time ever, I really wish I had a wheelchair. Shit. Did I really just say that? Oh and get this, I actually said it out loud earlier today. OUT LOUD! I said it to my husband. “Do you think they rent wheelchairs?” I just wanted to suck it back in after I said it. While at the same time, I wished I had one. Lord have mercy… I mean it. WTF? I mean it. Please. Have Mercy.
So I am in the most beautiful place on earth. Okay, maybe not on earth… but as far as I’m concerned it is as far as I will be going on earth for a really really long time. So it’s the most beautiful place on my “earth”… Santa Barbara. We came to look at my son’s future college, UC Santa Barbara. Let me just say this… I am proud of what I have accomplished while we have been here. We arrived on Tuesday morning. Here’s the deal:
Tuesday, 4:15 I wake up… we leave about 5:00am (again OMG! it is really early!!), drop Tani off at my folks house and get the hell out of dodge, arriving at UCSB at 10:00. So, I start my day off with a long drive in the car. NEXT… a long walking tour of the campus. I thought I was going to die. My cane and I followed this happy sophomore guide as fast as I could go… at the end? Well, let’s just say I could barely move. Where was the car? Ummm on the other side of the flippin’ campus. My foggy brain was not functioning, my son was off somewhere else, my daughter was leading the way and that was interesting as we took the long way back to the car. Needless to say… ARGHHHHHHHHHHHHHHHHH!!!!!!!
What is the moral to this story? If you have a really long, hard week… and you KNOW it’s going to be a really long, hard week. How about planning your vacation away from that really long, hard week so that you have a chance of NOT having a flare up while on vacation??
In my case, I didn’t really have a choice since I had to plan my vacation to coincide with my kids’ spring break. I’m not letting it ruin my vacation though! I am still doing what I want, I’m just working through the pain. I was hoping my flare up would be done before we started our trip, unfortunately it has progressively gotten worse… so I just keep doing my exercises and the stretches that I learned in my pain program and carry on! Y’all know how I am. Stay positive, and keep on going!
If we let this fibromyalgia/ chronic pain stop us… we would never do anything! I am in this beautiful place, the weather is sunny, blue skies, perfect temperature… I really couldn’t ask for more. I am blessed to be able to come here, so I am not complaining. I love it! What I am saying is, in the future… it’s all about timing.
It’s all about PACING ourselves. I just need to keep reminding myself of this. Pace, pace, pace, the number one challenge I need to conquer.
Well, once again, thanks for stopping by! Please let me know what you are thinking about!
Stay cool!
my foggy brain 
Hey Thanks For your “Wheel Chair” Blog!
I just had a conversation with the scooter store about getting a well, duh, SCOOTER… I had gotten a prescription, quite reluctantly, from my pain doctor. Reluctantly, not because of the fact that my doctor wanted me to get a wheelchair and I didn’t think I needed one, but rather because I had ASKED him for the script myself ’cause deep down I know that If I’m truly going to manage functioning at the level I need to, I need to use a wheelchair part-time during the week and this concept is still somehow embarrassing to me.
We, as Fibromites are all type A personalities. I think this is something that qualifies us for this syndrome. Almost like we’ve pushed ourselves too much, too far for too long and suddenly our bodies just say F-you and slap us with this horrible condition. And I can only speak for myself but I notice that it’s a constant struggle for me not to resist holding on to this “I’m ok! I can do it All” Behavior although intellectually I know the only way to cope with Fibro is to PACE PACE PACE.
So, the need for the wheelchair was a humbling experience for me! In the back of my mind something kept screaming, “Tamara, You’re a up and coming rock star! You don’t need this chair!!! People will think you’re faking!”
Then my assistant said why don’t you decorate the scooter or chair with KatZen (my band) stickers and “Ask-Me-About-Fibromyalgia!” stickers and give out education literature? Hmmm…. This reallly made me think…. Wow! What a positive way to approach this situation!
Maybe I can handle this after all!!!
I love that idea and I agree with your assistant! Type A personalities to a “T” we are… as soon as I start to feel a tiny bit better I can feel the tug to get things done. I start to put this checklist together in my head and already it’s 12 hours long… so I have this big ass clock screaming “8 HOURS! 8 HOURS! 8 HOURS!” in my head right now for tomorrow. I wonder if it will work. I am going to try. Pace! We’ll see. I am thinking positive right now and positive I will remain!
I really could have used the wheelchair this past week, I’m going to see how it goes in the next few weeks. If this pain gets worse, I’ll check out the wheelchair options. I am going to do my PT exercises and really work my butt off. You’ll have to post a picture up of that decorated transportation you got goin’ on!!
Thank you so much for stoppin’ by and leaving your comment!!
Thanks so much for commenting back on my comment! I will send you a pumped out wheelchair pic for sure! I absolutely love your site and your blogs and what your doing to help EMPoWER many women and people with fibro! You are a healer and leader in our community. I’ve attached some rules I posted on my website that help me get through the day! Hope you find them as helpful as I do!
My wish for anyone living with Fibromyalgia…
Our promotion with the NFA, in which we donated one-third of our proceeds from our album, “Overcome,” just came to a close. I’m receiving so much support from the Fibromyalgia community, it’s unbelievable! I have the opportunity to connect with so many other people suffering with Fibromyalgia and a lot of them tell me how inspiring my story is but I really want to emphasize that I am not “cured” and I haven’t found a way out of this pain. I still have terrible days of pain and all the problems that come with those days.
I have found during my times of intense pain some great things that have helped me and that may help you too if your experiencing pain or any dark period. It’s my wish for all of us to live full lives. Here are the things that help me to go forward each day.
I remind myself of this, again and again, ad nauseam:
May you learn to view and call your “obstacles” learning opportunities. Like my lyric “every thought is a prayer…” in “No Such Thing,” even our thoughts and our words carry energy and fibro is an energetic disease! We need to change our thinking patterns! The more positivity you create and surround yourself with, the more that will be drawn to you.
May you strive to send more energy into pacing yourself and less into the fact that you have this thing called fibromyalgia and how bad that sucks.
May you learn that taking care of yourself is not being selfish and that you deserve to have a strong support system to fall back on.
It is perfectly acceptable to tell friends and relatives who want to load you down or other psychic vampires, “No. I can’t do [that].” You don’t have to say preface it with “sorry” either.
May you literally schedule recovery time into your life.
May you not be ashamed to remedy your fibro despite what everybody else around you thinks. In other words, I know someone who really needs to use a wheelchair just two days a week but she’s too embarrassed to get one. I also know another woman that really wants to go on pain medicine and according to her doc needs to but won’t because of the opinions of her friends.
May you keep yourself in the now and out of the past that’s gone, that can’t be changed and the future that hasn’t happened yet. Remember that you are at your most powerful and capable self in the present moment.
May you get out of your head and into your body. In other words, STAY GROUNDED.
And lastly, the hardest for me, keep telling yourself that you love you. Simple. But hard as hell sometimes…
xxoo, Tamara
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I love that! Thank you so much for sharing!! Those are AWESOME!!!!
I could’ve written your post this week ~ my sentiments exactly! Our Relay for Life team (I’m also a breast cancer survivor..yea!) is having a “Slightly Loved Household Sale and we (I) are picking up donations, some of which have been slightly “over loved” and need some care, like washing, polishing, staining, repairing, etc., you get the picture. And like you and all other Fibros, I am totally anal ~ and can no way in hell learn to pace myself, so have been in * M A J O R * Flare Up for way too long. I hurt, I cry and then I hurt and cry some more. My husband said next year when we are getting ready to suggest a money maker for our team, there will be duct tape over my mouth ~ as there should be. Why in God’s name do we do this to ourselves ~ and by the way, What WERE you thinking of?
Hang in there, people have absolutely no idea what we go through just to get through. Thank you for your post and thanks for letting me vent. Blessings!!! ^j^
Stop by and vent anytime! :) It’s so good to know I’m not the only crazy one. My husband is constantly giving me “the look” or “the talk”, so I know exactly what you mean. It’s hard to go from doing it “all” to doing nothing. It’s a challenge to learn how to change our lives from doing high quality work to just average. It’s just not right… although I have noticed, noone else notices! :) Thanks for stopping by!
((hugs))
So sorry you had to experience a bad flare. It is true we must pace ourselves. I am still getting over the flu on top of a flare from the last stressful week. Saturday is a big day for me as I have an art reception to do with some artists and meet one of our writers for EIL. I am just hopping I have the strength.
Hope you get some rest before going back to work.
BTW did you see my note on your previous blog?
Take care,
Teia/VinaMist
I hope your reception went well! I am just now getting to reading the comments, I should get better about this, I love love love my award!!! Thank you so much!! This flare has not been fun, more painful than I can remember in a long while… but I guess it was good that I was on vacation, the fact that I was on vacation helped with the relaxation.
Take care Teia!!
Wow. I can relate to just how you feel. It’s such a shame you can’t go on a little vacation and feel good enough to walk. I woulda used the wheelchair..I did have to use one when we went to CAlifornia for my sons graduation from the Marine Corps. I couldn’t walk allover base, or when we went to the zoo. So I used chairs for that. Thanks for sharing, it helps all of us know we are not the only ones this stuff happens to. I hope you got some enjoyment out of it…I’m sure you did, once you were seated for awhile…lol. Hang in there!
Tammy
http://spicyt.wordpress.com
Hi Tammy! Thanks for the words, I agree it always makes me feel so good to hear from you all and to know I’m not the only one who goes through these moments. I will know to get a wheelchair next time there’s going to be a lot of walking. I never imagined I would feel that kind of pain. Life with fibro just never ceases to amaze me! LOL!! Have a great week!
Good morning!
What a great post. I can feel your words these days. I wonder if it is just me, or if you’re writing is simply getting better each day. Not that it was not good already — I just mean it seems like now when I read it I can see myself in your shoes. I felt like I was there, on the “other side of the campus” with your cane.
Also, this is freaky, but I too have thought about a wheelchair lately. I don’t think I’ve said it to anyone. Honestly, I can’t believe the hospital let me out while my heart was at 45-50 beats/min. You can imagine how tired I felt.
I had to go to the grocery store. I barely made it! I thought I would pass out before I’d get groceries, much less make it out of the store. It was horrible. My son asked for a pizza — he was home sick too — and I couldn’t make it as far as the frozen food section. I got food from the Deli ’cause it is in front of the store. I didn’t even buy cream for my coffee. Went without that for days. I simply couldn’t walk that far.
I asked my doctor if a person with Chronic Fatigue Syndrome/Fibromyalgia could get help with house chores, you know like other people do. He said he did not know. He did think about it for a sec. then said nobody had ever asked him that.
I told him I thought we should qualify for home health too, and I do. I am going to write a letter but I have no clue to whom it should go to.
I managed to vacuum my house a few days ago and do my dishes. I’m still sore! By the time I get over it my place will be just as dirty as it was.
Well, I’ve written too much. I’m supposed to be taking a break from very much typing so my fingers can heal. So I’ll stop my ranting here.
Thanks for writing. I love this post! Well wishes to you!
I know exactly what you mean… strangely enough, just talking this last few days has been taking a lot of energy. What is going on?? The weather is beautiful, I can’t figure it’s that… I am just not sure what is happening, all I know is that I am really tired, sore, and walking with a cane is really difficult.
Thank you for the very kind words on my writing, I appreciate what you have said. :) I write from the heart, and most the time I have no idea what I’m saying until I’m done. You are always an inspiration to me though! I know that I have help at home and you are dealing with so much more than I am. I am glad that you have that little angel next door, I think she was brought to you just in time… Best wishes to you for a good week!