Philly here we come! Travel with ME / CFS.

25 Mar
Up, up and away. 48 hours until I fly away!

Up, up and away. 48 hours until I fly away! Photo by Jess B.

The time has finally arrived!!  In 48 hours time I  will be at Heathrow Airport waiting to board my flight to the US to see my sister Lou! Excited does not begin to describe how I’m feeling about this!

You see my sister is at Grad School at UPenn in Philadelphia. She’s been there for 4 years now and although I’m obviously immensely proud of her for getting into an Ivy League school and for following her dream and passion by doing a PhD, she is my best friend and I miss her everyday. Skype helps but it’s nothing in comparison to sitting opposite each other chatting over mugs of green tea and slabs of cake (gluten free of course)!

Lou gets back to the UK as often as she can. But her work, life and friends are very much in Philly now, as it should be. Before getting sick two and a half years ago, Mr B and I had visited her several times. We love the US. Philadelphia is an awesome city so it was no hardship! However, thanks to ME / CFS for the last two and a half years I haven’t been well enough to travel so haven’t been able to visit Lou.

FIT TO FLY

Now I’m doing better, the powers that be (i.e. my doctors, my parents and Mr B) have deemed that I am fit to travel. Admittedly everyone has reservations about how me and my ME / CFS will cope, but I’m finally being allowed to board a plane and fly to the US!

I am so so excited about seeing and spending time with Lou again. But (now please don’t tell any of the powers that be this) I am a little apprehensive about the trip. The last thing I want to do is to push my body too far too quick. I do not do not do not want to relapse.

So it’s a fine balancing act. I am much better than I was even 3 months ago, but I am nowhere near what you would describe as full health or even half recovered. ME / CFS is very much still my everyday reality but my doctor has deemed me ‘fit to fly’ so here goes!

PLAN PLAN PLAN

There’s been lots of planning – my family are a little OCD when it comes to planning trips at the best of times and where my health is concerned we tend to go into overdrive! But hopefully it will all be worth it and me and my ME / CFS addled body won’t suffer too much.

PACKING

My mum helped me pack ten days ago, you may think that is a little crazy but it was so that this past week I’ve done very little and rested as much as humanly possible.

FOOD

I have a gluten free meal booked for the flight (BA don’t offer gluten and lactose free combined or even gluten free vegetarian which I think is utterly stupid) and have lots of snacks to take on the flight with me – peanut butter sandwiches, fruit and nuts, some Seed and Raisin Energy Balls and gluten free cakes too. I will not go hungry in the 8 hours we’re in the air!

My lovely lovely sister has stocked her apartment ready for my arrival with lots of gluten and lactose free Jess friendly foods.

WHEELCHAIR

I am the proud owner of a shiny blue wheelchair to use at the airport and when out and about in Philly so that I don’t physically exhaust myself too easily. I have wheelchair assistance booked for both airports so that the mile long walks to and from the gates are avoided.

INSURANCE

I have travel insurance and have declared my ME / CFS so there should be no issues with cover for health in the event things go pear shaped and I need medical attention.

HEADPHONES

Mr B has bought me these amazing Bose noise cancellation headphones (they really work, I didn’t even hear my mum and the hoover right outside my door yesterday) that should mean I can rest and do relaxations and meditations on the flight as well as I do at home.

SUPPORT

I am travelling with my Mum and Dad so they are there to support me both on the outbound flight as well as during the first few days/ week when I might need more support than ‘normal’. They are staying for a month and then Mr B is flying out for ten days and he is then flying home with me.

TIME

I’m going for six weeks in the hope that this longer trip will allow my body lots of time to get over the outbound flight before the travel home. With hopefully some time and energy in between to enjoy spending time with Lou  in Philly – and our preferred activity of tea and cake can just about be done on even my very worst ME / CFS days!

ROUTINE & PACING

As we’ve all visited Philly many times before, this trip is about seeing Lou rather than a touristy holiday. So we’ve rented an apartment close to Lou’s place and I will follow my daily routine the same as I do here. I will maintain my schedule of rests, yoga, pacing and diet. The only difference will be that my daily paced walks will be around Philly 🙂

I obviously want to get out and about and do some stuff (like visit the gluten free bakeries – Philly has 2! and go to Ann Taylor Loft(!) eat out, brunch etc) but I’m not going to go crazy and do too much in too shorter period of time and all outings will be paced.With going for 6 weeks I should be able to balance everything out…I hope. Besides which my family won’t let me do too much!

MEDS

My GP has stocked me up on all my prescription meds. He thinks with the Melatonin I should be able to regulate my sleep despite the time difference. These will all be safely packed in my carry on bag along with a stash of super strength painkillers and Tiger Balm.

US SUPPLIES

Lou has bought supplies of all my supplements so that I don’t have to transport them across the Atlantic – no point when they’re all available and cheaper in the States!

Ready and waiting for me in Lou’s apartment is a memory foam pillow and a light box. I also have a memory foam travel pillow and blanket ready for the flight to try and combat myalgia in my neck and my bizarre drops in body temperature.

STRESS LESS

I’m also using all the N.L.P and STRESS LESS techniques to reduce my stress and anxiety around the trip.

Once I’m there, and over the travel, provided I stick to my routine and pacing, I think/hope I will be fine. I will just need to listen to my body and allow myself the time to heal from the flight. I keep telling myself though that the flight is simply 8 hours of rest time, nothing to worry about. It’s all about breaking everything down into baby sized steps and going slow. I want to be able to do this so much. ‘She believed she could so she did’….here’s hoping.

As you can see we’ve tried to think of everything and anything that will help me and my ME / CFS on this trip. So here’s hoping that I cope ‘okay’ (setting the bar low!) with the trip and do not suffer too much.

Keep everything crossed for me and please send me your positive thoughts on Wednesday!

Also if you have any hints or tips for travelling with ME / CFS or any other chronic illness for that matter, that could help me, please do share and let me know. I’m still pretty new at the travelling with ME / CFS lark so any and all help and advice would be much appreciated.

Thank you 🙂

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9 Responses to “Philly here we come! Travel with ME / CFS.”

  1. ludlowquiltandsew March 25, 2013 at 4:57 pm #

    Well done for preparing so thoroughly, Jess. I hope you have a wonderful time in America.

    • myjourneythrume March 25, 2013 at 5:35 pm #

      Thank you! Hopefully all the prep will pay off and my body will play ball 🙂

  2. Lindsay March 26, 2013 at 12:09 am #

    sounds like you’ve done everything you could to prepare and that you have a wonderfully supportive family. hope the trip goes okay and you feel well!

    • myjourneythrume March 26, 2013 at 7:09 am #

      Thank you! I really really hope all will be well 🙂

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