This post was written by my husband Sander as a follow up to a post he wrote for Lymenaide back in September. He grew up in Australia. He uses the term, fair dinkum, in the post, it means real. Lyme is an actual fair dinkum disease, and don’t we all know it!
Ashley and Sander Dec. 2009
Back in September I wrote a post, PARTNERS IN LYME. In it I talked about how hard it has been to slowly lose my super active life partner to a long term illness. We went from traveling the world climbing mountains and experiencing life to the full to sitting in book stores and maybe walking the dog together.
I also talked about the positive life changing moment of getting the diagnosis “you have Lyme Disease”. We went from being told “you’re not sick, stop complaining” to having a plan.
Since then a lot has happened. My wife had to leave the mountains of Colorado behind; she’d found a LLMD in the San Francisco Bay Area. I stayed behind because of my fantastic job in Aspen, it was the only way we could afford to have Ashley stop work and focus on her health. But a winter in Aspen without my wife is cold and lonely, no matter how many friends I have there or how much I love the place.
So the next fall saw me searching the employment section of ski area websites in Lake Tahoe; that way I could stay in the industry and lifestyle that has given me everything and still be close to my wife. Sure, it’s not an ideal situation, but 5 hours drive time is a whole lot closer than the 1300 miles of space between the Bay Area and Aspen!
Lyme Disease has filled our relationship with nothing but love. It’s so much easier knowing that my wife is battling an actual fair dinkum disease rather than knowing something is wrong, but not knowing what. So being within a half a days drive of each other has been great. Now Ashley can see her fantastic doctor while I continue to grow my career in the ski industry.
Unfortunately though, the California ski industry is not like that in Aspen. I now have to work 2 months longer to earn $10,000 less for the season! This is especially difficult because Ashley is unable to work while she concentrates on getting over the Lyme barrier. But life is about more than money and to be able to see her over Thanksgiving, Christmas and my upcoming birthday is a real gift.
Ashley’s health now appears to be consistently heading in the right direction; I love her recent post EXERCISE FOR THE CHRONICALLY ILL. When we speak on Skype I can see the spark is back in her eyes. Gone are the days of the vacant stare. Her cheekiness is also back with a vengeance! I can’t describe how happy I am; there is light at the end of the tunnel and it’s within reach!
This Lymenaide website has also been a great help; Ashley has always been an inspirational person and to read how she is touching peoples lives makes me feel great. All of the time and effort she has been putting into researching Lyme Disease has helped her understand herself and the process involved in getting her full health back. I truly believe that the way through this difficult time is to be proactive and not dwell on the negative.
I like Ashley’s quote “I think I do so well because I rarely think of myself as being sick. I accept that I am, but I don’t let it become my identity.” I think it sums her up well.
Lymenaide has been a big part of her healing and so I want to give a big thanks to everyone who has been following Lymenaide. You’ve given Ashley a lot of motivation to get out there and stand up to Lyme Disease.
We may now be at our lowest financial point in our lives to date, but I’m wondering if life has ever been better. Our future looks bright and all those things we’ve dreamt of doing are closer than ever. The best part is that Ashley will be able to enjoy it all 100% instead of feeling like hell all the time. We’re not quite there yet, but we’re getting close. Life is good!
SANDER’S ORIGINAL POST, PARTNERS IN LYME
EXERCISE FOR THE CHRONICALLY ILL
February 4, 2010 at 8:47 am
What a sweet husband and what a kind heart you speak with! I love your woman too! She has helped me so much this past month since meeting her! I’m so glad she has you and that your love will help support her and heal her! What a perfect couple you are
. Happy days ahead! Tahoe is a beautiful place to both visit and live.
February 4, 2010 at 9:31 am
Reading your husbands post is so inspiring.As a mom with a daughter(Lindsay) who is on disability with Lyme, I worry about what this does to a relationship. Her significant other has been super supportive, but one can’t help being concerned.
I read your site every day. You are a bright light to those suffering with Lyme and also, a very fortunate gal to have a loving partner.
February 4, 2010 at 10:15 am
[...] the rest here: Lyme is a Fair Dinkum Disease « Lymenaide Share and [...]
February 4, 2010 at 12:14 pm
I would love the name of your LLMD in the Bay Area. Thanks so much for your WONDERFUL blog!
Cheers,
Amy
February 5, 2010 at 11:54 am
Amy, I’ve sent you a private message about my doctors.
February 4, 2010 at 12:26 pm
Sander…you rock. I’ve never met Ashley but she makes a difference in my own healing. I can see how she could make a difference to someone who isn’t sick too.
February 4, 2010 at 1:50 pm
Sander and Ashley, this is a fantastic success story unfolding for the two of you both from a medical and personal relationship perspective. Thank you for sharing your experiences so openly and honestly.
Warmest wishes for much continued success.
Doug
February 4, 2010 at 2:03 pm
What an amazing post from Sander. I love it. Thanks for sharing. Ashley, you are so lucky to have such a supportive husband – you’ll be bouncing back soon with him by your side.
February 5, 2010 at 6:00 am
[...] Lyme is a Fair Dinkum Disease « Lymenaide [...]
February 5, 2010 at 11:55 am
Thanks for all the encouraging comments! I know that my husband is great and that I am one very lucky Lymie to have him by my side.
February 7, 2010 at 9:57 am
You two are truly an inspiration. I am newly dx with chronic lymes from a West Texas town where there is acknowledgement that the disease exists, but they don’t know what to do with me.I am also blessed with a supportive husband!!Would you mind e-mailing me your physician. Thank you for sharing!! Peace and Love to you both.
Michele
February 7, 2010 at 7:09 pm
Its good to hear someone else out there that supports his wife like that. My wife also has Lyme and even though it can be frustrating at times, she is my best friend and my wife, and the support I provide, as little as it seems, is the least I can do while she goes thru what she does. Thanks for the inspiration to keep us spouses going.
February 8, 2010 at 2:36 pm
wow…you are so blessed to have such support Ashely1 =)
February 8, 2010 at 8:06 pm
This post really touched my heart. If I wasn’t convinced before, I know now that lyme is absolutely a fair dinkum disease! It is also so clear how real all the sacrifices you have had to make to help Ashley get the treatment she needs. Best wishes to both of you!
February 9, 2010 at 8:53 am
Thank you Selena. On of the hardest parts about having Lyme is trying to explain it to others. How do you convince people even your family you are sick when doctors don’t even accept it as a legitimate disease? Thanks for understanding.
February 10, 2010 at 1:04 pm
Thank you for this very touching post. You and your husband’s story give Valentine’s Day real meaning! It is so good to read about a positive, supportive relationship – and how through teamwork you both find real solutions and share the difficulty of a chronic condition. Wishing you both a happy V-Day.
May 30, 2010 at 11:32 am
To: Ashley van Tol (Hello)
With respect to ur statement you posted on:
(February 9, 2010 at 8:53 am)
This will be rather long, sorry, but to see the whole picture.
The beginning: Since by trade my profession I’m a roofer, through a couple years I had been working in a townhouse complex. During that time a lady observed myself working through years of 2007 & 2008 during these years I hadn’t realized this lady had some kind of interest in me. She also caught my eye, but working didn’t really think anything of it. In mid 2009 she text message me through cell phone, I really didn’t know what to make of it. But I responded to the message, then I called her we had spoke on our cell phones. She explained, she was into me for many years, she expressed what did it take to get my attention. Since this was the middle of the week, she asked if she could visit at my home. The weekend came Saturday/Sunday/Monday we spent time together at my home.
From her arrival, I felt a rapid excitement deep inside, as the saying goes (Love at first sight).
During her visit, I didn’t know she was ill with on and off symptoms of being sick. I slowly learned from her explaining she hadn’t felt well for some time. She explained, through text messaging her symptoms of being sick to me, and explained numerous Dr. Appointments and hospital visits from which she endured with her parents. She explained, tests all appeared to be negative, as everyone she’s seen stated there wasn’t anything wrong with her. We currently reside in British Columbia. She had mentioned everyone she had spoken to, even her family Dr., had stated there isn’t anything wrong with you, and that you should seek attention with a psychiatrist, as if they thought it was all in her mind with respect to who are feeling the way she felt. She explained, she would get uptight and mad that no one believed her in how she felt. The more she felt uptight and mad wards of people not believing her, the meaner these people doctors would retaliate against what she is saying, as she expresses how she feels inside.
I’m assuming, she has researched Lyme disease symptoms from which on the Internet. Comparing her symptoms with from which she has read on the Internet, they compare to be the same.
We’ve exchanged text messaging quite a bit, as I’ve written to her expressing my rapid feelings of how I feel for her, which already love her. We don’t currently live together, not that it isn’t my wish for us to.
We both have slightly small differences between us, but as she’s been feeling the way she has been since June 2009, maybe even earlier than this month, pinpointing the actual time of her generating this feeling of sickness in the way she feels, isn’t for sure. At least I don’t know.
Exchanging text messages, sometimes generates confusion, as she misunderstands my message, then I assume it’s leading to fighting, with misunderstood messages.
When say someone says, (I Care for you) even in a short amount of time, expressing a word care mentioning it in a letter and or face to face to someone of the feelings you feel inside for the other, is very hard even though they’ll never see or feel what one cell feels for the other.
Ashley, here is a text message from which I receive from her, I ask have you ever felt the way she expresses herself in this message? (mainly the symptoms she speaks of here).
1-Message:(U don’t know what a fucking splitting head ache is till uve had mine that makes u puke, hve fever,pain thru whole body, bang ur head against floor pains so bad,grab pull ur hair it stings& burns so bad&roll on the floor in severe excrutiating pain& hve docs tell u nothing wrong with u. The more u tell me the more I realize u hve no clue about me&me sickness. U can’t even remember me txting would like 2 c full moon rise&had 3 nites 2 invite me but didn’t.I txt about feeling less stress cause A met dog trail she plays with & alot of my stress is cause Angel has no friends& worry about her health & happiness. U ignored.)
2-Message:(Oh& I hvnt been able to barely eat
since sat cause these antiobiotics make me even sicker. A bowl cereal, banana,yogurt is what I ate each last 3 days so very weak&tired.I would never be able to say all this, mind gets confused cause tired& sick& major conversations hurt my head!)
3-Message: (Oh ya txting fun 4 me! I’m the 1who made the fucken effort 2 cum 2 ur house 4 days& got snapped, bitched at from grumpy grouchy guy who spazes about stupid things like bread(I can remind u of more things not gentlemen like u did) but when I’m deathly ill & can barely talk ur lucky u got txts! Most of my friends don’t even get txts cause I feel like shit! Tired! Can’t concentrate ! Aches! Pains! I rather b with a calm person but u freak! & I hvnt spoken 2 friends ling time cause my fucken head,,face,jaw ache! People with Lyme hve had 2 hve jaw surgery cause it eats at ur jaw so sorry I don’t hve major long fucken talks with u! I’ve already stopped communicating with quite a few friends cause they whined like u I can’t talk that much& half the time brain dead&cant it hurts 2 think just line crying makes my fucken head hurt! Now I hve u complaining just like friends I decided rnt real friends if they can’t understand how I feel& what the fuck my mind& body going thru! Thanx!)
I do understand, that you and her are two different people, but do you comprehend and understand what she’s going through?
We haven’t spoken in any which way or form, since May 17 2010.It’s hard for me as in thought, as I send a text message to her and there isn’t a response, and therefore think she’s very sick and or mad me for some particular reason. Also, to send a message or call and leave a message, and start the message off as (good day) or (hope your feeling a little better today) when I’m really not sure how she’s feeling before I do this.
How is one self to feel, and express their feelings toward someone, which has Lyme-Disease?
I’d very much appreciate, the time that you have taken to meet my letter. Any help would greatly be also appreciated.
PS I tried to express my concern to this lady, it seems that this Lyme-Disease is in the middle I don’t understand her situation, and don’t know what do if I can do anything to help comfort her in any way.
Sincerely yours, Sam….