“Maybe the reason nothing seems to be ‘fixing you’
is because you’re not broken.
Let today be the day you
stop living within the confines
of how others define or judge you.
You have a unique beauty and purpose;
live accordingly.”
~ Steve Maraboli
“Be nice to yourself.
It’s hard to be happy when someone
is mean to you all the time.”
~ Christine Arylo
“View your life with kindsight.
Stop beating yourself up
about things from your past.
Instead of slapping your forehead and asking,
‘What was I thinking,’
breathe and ask yourself the kinder question,
‘What was I learning?'”
~ Karen Salmnsohn
Always remember, you are doing the best you can; be gentle with yourself.
**self portrait by W. Holcombe. Please do not use without permission.
We all see them, the chronically ill who are living amazing lives, even doing things above and beyond what most “normals” do. They don’t let their illnesses stop them. They thrive despite their illness. These people are supposed to be an inspiration. We are to be amazed and we’re supposed to look at them and realize, “Hey, if they can do it so can I.” (does that really work?)
There always seems to be a celebrity who has the same disease you do. As a spokesperson for our illness they are supposed to be an inspiration, after all, if they can do it, why can’t I?
Do they really inspire you? Does it give you hope? Or does it make you feel inadequate? Does it make you feel bad because you haven’t been able to do what “normals” would define as remarkable things in spite of our illness.
For me, it’s often the later. I feel inadequate because I simply cannot do the things I used to, let alone do extraordinary things that I’ve never even thought of doing.
It concerns me that people will compare me to those “inspiring” people and think that I’m exaggerating the severity of my symptoms. I’ve had well-intentioned friends and family members send me articles about someone who has Meniere’s Disease and how they are are either living amazing lives despite Meniere’s, or they were “cured”. This happened a lot when Dana White (president of the United Fighting Championship), underwent a treatment for his Meniere’s and it was a “miracle cure”. What they don’t realize is that there is more than one cause of Meniere’s, so his treatment may do nothing for me; he has Meniere’s in one ear, I have it in both. They also seem to ignore the fact that he had to go to Germany to have this procedure done….ummm, who’s going to pay for this? Not my insurance that’s for sure. and just how safe is it? After they send these messages, I wonder, do they think I’m not doing everything I can?
When we hear that someone is an inspiration, it is supposed to be a positive thing, but inspiration can be negative. You can inspire people to do bad things. Look at Charles Manson or Adolf Hitler, for example, they inspired people to do all kinds of horrible things. They were very inspirational, just not like we have been conditioned to think of the word.
The people who inspire me to try harder, to live more fully, to embrace life, and simply care more are the amazing people I meet who have chronic illnesses and can still love their life, with all it’s limitations. I’m amazed by the people who undergo many painful medical procedures and still greet each day with love. I’m positively inspired by those who are able to push through and do the everyday things, even when life is just so hard. The people who show compassion and support to others despite the fact that they get so little themselves, these are some of the people who inspire me to be the best me I can.
I’m not saying that famous people can’t be a positive inspiration, I’m simply saying that is not always the case. When I see a list of famous people who suffer from vertigo, it doesn’t inspire me to do anything. I feel compassion for them, and I often wonder exactly how much they battle with their illness behind the scenes. What are we not seeing? The phrase, “but you don’t look sick”, sure hits home when we see someone like the beautiful Selena Gomez, who has Lupus.
Then I hear things like, “Nicolas Cage suffers from vertigo all the time”. Ummm, really? All-the-time? I could believe he has disequilibrium all the time, but full blown vertigo, no way. I simply do not believe it. If he has vertigo all the time and can function as well as he does, that would be a miracle. I can believe that he may have recurring vertigo, but not constantly. I’m pretty sure I’d kill myself if I had full blown vertigo all the time.
Who inspires you to be the best you can be?
Do you get positively inspired by famous people who have your illness?
Does it make you feel inadequate when you hear that someone who has the same illness that you have has done something like run marathons, or started a successful business, or has won the “Golden Buzzer” award on America’s Got Talent, like Mandy Harvey did, who is deaf?
Am I the only one who is rarely “inspired” by these stories?
“Step outside for a while –
calm your mind.
It is better to hug a tree than
to bang your head against a wall continually.”
~ Rasheed Ogunlaru
“Take my hand.
We will walk.
We will only walk.
We will enjoy our walk without
thinking of arriving anywhere.”
~ Thich Nhat Hanh
We’ve been having some nice days here, which means I’ve been able to get out of the house and walk a bit more. The photo above shows something I saw on my walk. It made me happy.
Come, walk with me. Oh the wonders we shall see. From the mountains to the sea.
*photo by W. Holcombe. All rights reserved. Do not use without permission.
I was so proud to be asked to participate in the following article. Kim at I Tripped Over a Stone and Kali at This Spoonie Speaks were also also participated, both are excellent advocates, please make sure and check out their blogs. Please see what we had to say on the subject of clinical trials, and add your voice by adding to the comments. The people at Antidote really want to know what you think. I hope you will feel we were successful advocates for the chronic illness community.
…….”We spoke with three patient advocates living with invisible illnesses about how researchers — from those involved in study design all the way to site staff — can better engage them and their communities and drive clinical trial patient recruitment. Here is what they had to say:………… click here to read the whole article
Interested in learning more about participating in Clinical Trials? Click on the big black button on the right hand side of my blog and you can search for trials in your area. There is never an obligation, accept or deny any trial you are matched with.
Tuesday was my husband’s 50th birthday, and as I write this he is sitting on the floor putting together a Lego helicopter, he is so cool.
Kiki thought she would help.
Early last week I realized that this was his 50th birthday! Oh my goodness! I hadn’t planned anything really. Yes, I got him the Legos, and I planned to make him dinner, but that wasn’t enough for this milestone. I was determined to do something special. I was on a mission.
This mission was impeded by the fact that I can’t talk on the phone or drive. Hmm, so what could I do? What did I do?
First I decided I wanted to take him away, not far, just away from our house. I wanted to spoil him, so I started looking for a hotel that also provided massages. First I did a lot of looking on line and I even did a live chat with one representative, but the chat suddenly stopped, the hotel had to be called. What to do? At this point I was afraid I wouldn’t be able to follow through on my desire to spoil my husband. Ah, but I have a friend who I chat with via Messenger almost every day, I asked if by chance she had the time to call the hotel for me, and she did! She called and stayed on Messenger with me so she could ask me questions. It worked out great! It was obvious from the start that the staff at this hotel were incredible, not only was the girl at the front desk helpful, she actually went out of her way and went to the restaurant kitchen to see if they could accommodate my food requirements. She was not asked to do this, my friend only asked if there was a gluten free menu available, she took it upon herself to try to make sure we would enjoy our stay. She helped us book a Spa Indulgence weekend. The girl at the spa was also amazing. She helped us set up massages for both me and Stuart at the same time. I wanted a special type of massage, Lomi Lomi, and she made sure I could get it. (there is only one massage therapist who does this type of massage) Again, my friend was amazed by how helpful these women were. It was a very good experience.
from inside our hotel
I also wanted to take us a little picnic, that way if we had the munchies during the night, we didn’t have to go forage for food (or spend outrageous amounts on room-service). Really, I just thought it would be romantic. Again, an obstacle was in the way, I can’t drive. How would I get the food for the picnic without Stuart’s help? I didn’t feel comfortable asking my neighbor to take me to the grocery store, so I decided to look into having some groceries delivered. I had a little difficulty because the first place I tried to order from had to call to get payment information. I couldn’t give them my credit card information over the phone, since I can’t talk on the phone. Bummer. Of course, I didn’t find this out until AFTER I had done all my shopping. pfft. So I found another store that offered delivery and was able to place my order and have it delivered while Stuart was at work. I did have to tell him we were going away for the weekend, but the picnic was a surprise.
I also got our pet sitter set up. That was another issue I had to sort out. Our normal pet sitter was going out of town, but she offered to take Kiki with her. I know that my dog hates to ride in the car, she gets car sick…poor puppy. So I called Kiki’s trainer (he helped her feel better about people coming in our house, it still bothers her, but she is much better about it) He said he could take her for the weekend and I thought that would be the answer, until I found out how far it is to his place. Kiki’s normal sitter’s trip would mean an hour or so in the car, if she stayed at her trainer’s it would have been a 45 min ride. Hmmm. Kiki went on a little trip with her normal sitter. It all worked out, but it was an ordeal. And I handled it all through texts, without help from Stuart.
Getting ready for this getaway took a lot out of me, but I’m proud that I was able to do all of these things without Stuart’s help. He does so much for me, doing this for him meant the world to me. He was pretty happy with it too. I’m not even sure if he was happier about the trip, or the fact that I spread my wings and found ways to be a little more independent.
While planning this trip I was so worried that we’d get there and I’d start to feel bad and would ruin everything. Of course, Stuart wouldn’t have thought it was ruined, but I would have. It would have broken my heart. As it turned out, I didn’t sleep well on Friday night and Saturday was a bit of a challenge for me. I was very dizzy all day and simply felt, bad. Truthfully, I wanted to stay in bed and sleep all day, instead I got up, had a good breakfast with my husband, and went to the fitness center and did all of my PT exercises. I was hoping exercising would make me feel better, it didn’t. We had talked about doing something on Saturday, either before or after our massages, which were scheduled for 2pm, that didn’t happen. We just vegged and spent time together. Then we had our Spa Experience. oh my goodness….
all ready for my massage
When we arrived at the spa we were taken to the dressing rooms and were given plush robes and slippers to wear. We were given fruit scented water to drink as we waited. It was so relaxing, I’m relaxing right now just thinking about it. We were then taken to a darkened room and were given most delectable massages. It was a dream. Afterward, we were again given water in wine glasses and settled in to rest a bit before leaving. There were also snacks and tea available if we desired. There were these fabulous lotions there and I actually found one that I like. Most things have way too much of a scent for me, almost everything I have is either unscented or has a lemon scent, this lotion smells like Fresh Melon. Stuart loves it, and it doesn’t make me wheeze or give me a migraine…score!
On both nights we had dinner at the restaurant in the hotel. The first night we had steaks, they were delicious. I felt that the vegetables had too much oil on them, but they were still tasty. The second night we both had fish, it wasn’t as good as the steaks, and again I felt like the vegetables had too much oil. They were both good meals, they just didn’t seem to be on the same caliber as the rest of the hotel. Except for desert, I had chocolate crème brûlée, it was divine. I saved some and had it on both nights. Stuart had a salted caramel cheese cake, it was go good. A bit too sweet for me, but very good. Really the crème brûlée was a bit too sweet for me too, but it was oh so good.
There’s more to tell about this trip….but I might keep that to myself. 😉
This week I’ve paid the price for my excursion, but it was worth the pain and the dizzies. Stuart is worth it. It was nice to take care of my caregiver.
Sometimes, it’s just worth it.
Have you accomplished something that you didn’t think you could?
Do you sometimes think “it’s worth it”, when you know you are doing something that may deplete all your reserves and have you flaring for days?
“Relaxation means releasing
all concern and tension and
letting the natural order of life
flow through one’s being.”
~ Donald Curtis
“Meditation is all about the
pursuit of nothingness.
It’s like the ultimate rest.
It’s better than
the best sleep you’ve ever had.
It’s a quieting of the mind.”
~ Hugh Jackman
“And sometimes
the most important thing
in a day is
the rest we take
between
two
breaths.”
~ Etty Hillesum
*photo by S. Holcombe, please do not use without permission. (Tumacácori National Park)
“Looking up gives light,
although at first it makes you dizzy.”
~ Rumi
“I am trying so hard to live in the moment and
enjoy it while it’s happening,
because it feels like a moving freight train that I just got on,
and I’m trying not to look back and get dizzy!
~ Laura Bell Bundy
“To be alive is to be dizzy
and not to know exactly where to go.”
~ Ander Monson
*image by W. Holcombe, please do not use without permission.
You may recall my post back in December where I talked about my fear of gaining weight. I felt like I was handling that better, and things were going well. I was trying to focus on nutrition and not on weight. I have been trying to eat more mindfully, more intentionally (appreciating the food, accepting it’s nourishment, paying attention to my hunger cues….)
I say try on all of these because I haven’t been doing a very good job recently.
I promised I’d write a post about mindful eating last week, and well….. yeah, I didn’t get that done. I started getting very obsessed with food this week.
The fight with food is strong in this one (ha, I sound like Obi Wan..or Yoda).
I was doing well when the scale was staying the same, and even went down a little. Yes I still want to lose that last 10 pounds. I think I’m more anxious about my weight because I still have not gotten to the weight I want to be at, if I can get there I think I can keep it off, but why will these last few pounds not go away? yeah, I know there’s more to it than that, but it’s very hard to voice what I’m feeling.
I know it’s not healthy to be so obsessed with my weight, but I also feel like if I’m not very diligent I will end up back where I was. I really don’t want that. I feel better about myself now (no, really I do!!). I’m more confident when I meet people. I have more stamina….. I know how bad I feel when I’m bigger, both physically and mentally, and this is better. Even though I’m obsessing about weight gain, it’s better than beating myself up over being fat all the time. Hiding my body, not wanting to wear clothes that show skin, not wanting to be intimate, avoiding looking at myself in the mirror, cringing when I’d catch sight of myself in a store window…these are not healthy things. My fear of gaining weight is part of that. I don’t want to feel so out of control any more.
I am seeing a therapist about this. After a friend shared that she had been seeing a therapist through an online counseling site, and she had a very positive experience. With all the barriers I have trying to go to see a therapist face to face, I decided to give it a try. I’m so glad I did.
I’ve been “seeing” my new therapist for a couple of weeks now, and by golly this woman has earned her money! I was not in a good frame of mind this past week. Food issues, anger, racing thoughts, insomnia…..mania. Yep, I had a manic swing. It wasn’t as strong as it has been, and I’m pretty proud of how I handled things, but it I was not my normal self. I’m sure my new therapist didn’t think I was handling things very well when I bombarded her with emails for 2 days, but I just had a live chat session with her and it’s all good. (by bombarding her, I mean that I wrote her 5 emails within about 3 hours, all of which were looooong. If she weren’t my therapist I’d be embarrassed. Okay, I’m still embarrassed)
I’m going to close for now. I just wanted you all to know that, I’m not dead, I will eventually write a post about eating mindfully, and I am seeing someone about these issues of mine.
Have you ever thought about online counseling?
Would you try it, or not? why?
I’ll share more of my experience soon…..no, really, I promise I will.
“Kindness is like snow –
It beautifies everything it covers”
~ Kahlil Gibran
“Sunshine is delicious,
Rain is refreshing,
Wind braces us up,
Snow is exhilarating;
there is really no such thing as bad weather,
only different kinds of good weather.”
~ John Ruskin
“Inner peace is a quiet
evening moonlight walk in
the soft falling snow of our minds”
~ Wes Adamson
*photo by W. Holcombe, please do not use without permission.
Picnic with Ants 