Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Ben and Claire's adventure to Davis-Dafoe land!

Discussion in 'General ME/CFS Discussion' started by Ben H, Feb 7, 2017.

  1. Ben H

    Ben H OMF Correspondent

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    Hey guys,

    So I'm currently in California with my wife Claire, and thought I'd write about the trip. It's been an eye opener for me so far, and hopefully will give some insight into @Rose49 and Prof Davis, life over here, and other random musings. So....


    Part 1:


    The day started at 6am, an hour unknown to me since my gym days. A couple of klonopin down-in the hope that they would work and reduce the stimuli throughout some of the trip- I made it from my bed to the car. P.s. I should add I am not a junkie, I do have a prescription for klonopin!

    The drive to Heathrow was uneventful thankfully. We had asked for disabled assistance and I ofcourse had my wheelchair, and the staff were exceptionally helpful. Maybe it was because I looked disabled with my wheelchair, but at any rate we got to board before anyone else and go to the front of the queue. One perk I guess.

    We took off 12:50 UK time. I had flown before since being sick but that was when I was mild, the sensation of taking off and cabin pressure was not pleasant on top of the usual symptoms. Luckily a wonderful, wonderful friend upgraded our seats so I was able to lay flat in a bed. This was an absolute blessing and made the 10 1/2 hr journey as comfortable as could be.

    I sneaked a peek out of the plane window for as long as my shaking arms could manage, and I was reminded of the incredible beauty of our planet. We flew over Greenland, and the lower parts of Canada and saw the mountains from 40000ft. Certainly to someone who has not been outside properly since last June, it was breathtaking. For some reason those glimpses lifted my spirits hugely. There is a world out there, an awesome world, and when we are all well again we will see it.

    We landed in San Jose Airport at 3:30pm local time. Its a lot smaller than Heathrow! We managed to skip the queue a little and made it through customs okay.

    Thats when it hit me. Damn. We have made it. The most insane trip of my life. We are in California!

    Truth be told we had made it, but the hardest part of the trip was to come-getting to our car we had rented and navigating to Janet and Ron's house.

    The next hour was like something out of a Laurel and Hardy sketch. Claire had packed so many suitcases, 5 in fact, which provided the ammunition for many comedic moments. Why we need 5 cases I am not so sure, but I know better than to question ;)

    We made it to the car rental place, and I waited outside in the wheelchair while Claire went inside, surrounded by all 5 suitcases, as if I was trying to make a fort with them, with only my head poking out. It must have looked utterly ridiculous. I was also there for 30 minutes like this, as apparently time was not of the essence at the car rental service desk.

    During this time I called Janet. "We're here!" "Really?" She said. She sounded surprised-exactly how I felt. "Really".

    Janet asked how I was doing and I mentioned the klonopin and that things had gone smoothly so far, as far as they can for a severe ME patient! We talked briefly about how to get to her, whilst I quietly prayed we had satnav. I must have sounded like a broken record asking about directions, but I can barely remember my own name, and plus, these Americans drive on the wrong side of the road for starters. :D

    Claire finally came out and unravelled me from my fortress of luggage.

    We needed to make it up to the 5th floor to get the car. I think the lifts at that place have a sense of humour because each time the button was pressed to call for one, a lift at the polar opposite of our location was made available.

    When Claire finally managed to call a lift near us, she promptly dropped the trolley full of luggage and by the time had repacked, the lift door had shut and made it way kindly back down. You couldn't make this stuff up. I had to laugh, even though it was crashing me.

    We did get there eventually. After a good 10 minutes or so.

    I was secretly hoping for a Dodge Charger, or a Ford Mustang in the hopes they had made a mistake, but alas we ended up with a Hyundai automatic. Its fine. It's red....

    Updates to follow.



    B
     
    Last edited: Feb 8, 2017
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  2. Sushi

    Sushi Senior Member Albuquerque

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    Thanks Ben, but don't leave us hanging while we imagine you tangled up in California freeways! Just tell us that you got there!:nervous:
     
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  3. Ben H

    Ben H OMF Correspondent

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    We got there ok! But yea...those freeways :eek:


    B
     
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  4. AndyPR

    AndyPR Senior Member

    So excited for you Ben and I hope that you haven't been affected too badly by the trip, my last experience of flying wasn't a very good one and I'm only moderate. Looking forward to the updates when you are able to make them.
     
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  5. trishrhymes

    trishrhymes Senior Member

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    Brilliant that you made it, well done you and Claire. I do hope it hasn't set off a major crash. Still, you're with the best possible people.

    Look forward to hearing more when you're well enough to write again.
     
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  6. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    I hope you have the time of your life- and rest!
     
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  7. Aroa

    Aroa

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    What an experience ! I am very happy for you @Ben Howell !!!! :):):)
     
    Last edited: Feb 8, 2017
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  8. Cheesus

    Cheesus Senior Member

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    Every now and again I have get a taste of something that reminds me of an experience I haven't had for years. It can be so strange to realise that there is a whole realm of human experience that I barely know anymore. It is going to be so sweet when I am finally resurrected.

    Well done for getting to Cali! It must have taken a lot of guts to commit to that plane flight. I am very pleased to hear you got first class - it would have been an absolute killer without that!

    Looking forward to hearing more.
     
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  9. erin

    erin Senior Member

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    This was the most uplifting thing I've read recently. Thank you for this thread, I hope you'll continue to let us know your California adventure and the time you'll be spending with wonderful @Rose49 and Prof Davis.
     
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  10. Ben H

    Ben H OMF Correspondent

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    Thankyou for the lovely messages about my incoherent, spontaneous blabberings! I will be updating as I go and can. There will be some science stuff in there too!

    Part 2:



    So, we had our car and now needed to navigate the car park. Everything is bigger and better in America right? Well, that started with the 'helter skelter' ramp down to the road. Like the worst amusement ride ever, especially when sick.

    We managed to navigate it successfully (the little things) and got on the freeway. This was fun. No one had told me but apparently it's pretty much a free for all. Overtaking happens on both sides, cars cut you up (we were in the right lane I promise!). However there was not one murmur of horns beeping. Certainly the most polite passive aggressive drivers I have ever come across :D

    Claire was driving and I was trying to navigate on the iPhone. This was not ideal for many reasons and even in normal circumstances can lead to marital rockyness. But hey, it went okay! We managed to navigate and didn't even take a wrong turn. We came off for Palo Alto successfully.

    It was pretty grey weather wise and no American we know is allowed to make jokes about UK weather anymore, especially after the ridiculous (but beautiful) amount of rain that night!

    So we navigated to Janet and Ron's address, and I triumphantly phoned Janet to let her know. "We are outside" I said, pleased with myself. "We don't see you" she informed me. "What does it look like" Janet asked. "Um...there is a house....with some pillars, um...its white.....er....that's about it". A sterling description I thought. "We are parked behind a funny truck!" I exclaimed, pleased with myself for no apparent reason. I clearly had no idea what I was talking about, the last 12 hrs clearly addling with me, but it was obvious we were not at the right house.

    Anyway, after Janet's further instructions, and Claire and I driving about we drove back down the road and saw Janet had come out onto the street! Yes!

    She had an expression of surprise, but was also beaming as we got nearer. I think she was surprised like us we had made it. We parked up and got out.

    Now I am extremely emotional at the best of times. Yea, for a guy, but I'm just built that way. I got out leaning against the car and Claire and Janet both put me in the wheelchair. Janet then gave me the biggest hug, and whispered in my ear "we are going to fix you". That was too much. I ended up a tearful wreck resting on Janet's shoulder. I have so much love for this incredible woman, as we all do. We have become very close over the last year, but she still called me a wuss :D

    Janet and Claire got me up inside and there was Ron, smiling. He started to say hello but I interrupted with a huge hug with my trembling arms, and said thankyou so much, still in 10/10 emotional mode. He gave me a wonderful hug back, and I was wheeled into their beautiful library room (and house-more on that later) to lay down, and rest for a while.
     
    Last edited: Feb 8, 2017
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  11. AndyPR

    AndyPR Senior Member

    Nah, not a wuss, just a big girl's blouse! ;)

    Good to hear another instalment, can't wait to hear more.
     
  12. Comet

    Comet I'm Not Imaginary

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    :cry: :) :love: :cool:
    This is so touching. I am so thrilled that you made it all the way to California, Ben! Can't wait to hear more. Best of everything to you!

    So glad you are all getting to meet up. :angel: Will you be able to meet Whitney?
     
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  13. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Unfortunately no. Whitney can't tolerate hardly anything. He can't even tolerate us, but no choice. We have to hook up his food, take out pee, (et al), and fix covers, etc. we tiptoe and don't touch him. No sound. Eyes covered. His schedule is now keeping me up till 8-9 am, so I sleep in day and then get to hang out with Ben and Claire. So nice. Who's next???
     
  14. helen1

    helen1 Senior Member

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    Amazed for you Ben! And you made me cry... or Janet did, with that whispered phrase of hope...
     
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  15. Aroa

    Aroa

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    Oh my god, I can imagine how exciting and emotional must have been arriving at Janet and RonĀ“s house. You described it so well .

    I think I am really going to enjoy this thread. It would perfectly be part of a film with a very happy ending :balloons:

    I hope and pray for Whitney to get better !!!!!
     
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  16. Comet

    Comet I'm Not Imaginary

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    I'm so sorry that Whitney is still unchanged. :( I remember you saying, @Rose49, that he had managed to gain a bit of weight, so I guess I was hoping he had made some small improvements. I think of him all the time. You are all such a wonderful, loving family, the way you care for each other, and for us!

    Me... Me...!!! *Flails arms in the air... Arms become become heavy as cement... I begin panting from the effort, realize this is a pipe dream and lay back down. :lol: :( :ill: :bang-head: :sleep:

    Enjoy your visit! Thanks for sharing it with us. :heart:
     
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  17. Jan

    Jan Senior Member

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    So pleased for you Ben, praying your health won't be affected too badly. Have a wonderful visit.

    You just brought me to tears reading that last post, sending love to Janet, Ron and Whitney :love:
     
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  18. AndyPR

    AndyPR Senior Member

    Well, if there is a good chance of an increase in my functionality then me.
     
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  19. Ben H

    Ben H OMF Correspondent

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    Hey @Comet

    Thanks for being so kind.

    Janet has explained about Whitney, but I wish I were able to-it is on my mind a lot, especially being so close yet so far. It will be part of an upcoming post when I can figure what to say.


    B
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    Wow, thank you @Ben Howell and Claire for for sharing this amazing journey! I wish I could meet you guys but I live in So. CA about 6-7 hours south of where you are now. You are in amazing hands with Dr. Davis & Dafoe, that is for sure! I will be following this thread closely to read more about your adventures in our great state (I am biased LOL). Am so sorry to hear that you will not be able to meet Whitney but some day this will happen, I just know it.
     

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