Hello from Philadelphia! Gluten free bagels, donuts, Spring flowers, pain, tiredness and more.

1 Apr
My sister welcoming us to her apartment!

My sister welcoming us to her apartment! Photo by Jess B.

I still can’t believe I’m actually here. It’s amazing to see my sister again and to have my little family reunited for Easter. It still all seems a bit surreal. I keep thinking I’ll wake up in a minute and find myself back at my parent’s house in England.

This post is going to be shorter than usual as I’m not feeling great. It’s been a pretty mixed bag of symptoms since we arrived:

Day one – severe myalgia pain in my neck, shoulders, arms and legs. Tired…obviously!

Day two – myalgia thankfully eased, just bad in my neck and shoulders. Very tired, thick head.

Day three – very very tired. Hypersensitive and pretty emotional and teary. Thick head.

Day four – very sore throat, heavy muscles in legs and arms, headache and very tired. Temperature a bit crazy too, hot one minute, cool the next.

Day five – today – still early so I’ll see how I go as the day unfolds but very sore throat (inside of ears hurt too), feel a bit ‘fluey’ achy, hot and cold. Hoping it’s just ME / CFS ‘fluey’ and not the start of actual flu. Am pretty sure it’s just the ME / CFS symptoms – she says with her fingers crossed.

I’ve also been experiencing muscle twitching. Every time I lay down to rest or sleep my foot or fingers twitch. Sometimes it’s in my upper body too, my neck or shoulders. My mum said it was happening on the plane too, she could see the twitches happening even though on the plane I didn’t notice it then. All quite odd!

So overall, things haven’t been great but in many ways better than I expected to feel after the day travelling last Wednesday, the flight and the time difference. My mum said she was impressed with how well I’ve coped with the trip and Lou thought I seemed pretty alert Β on the first day, this seems to have faded a bit over the last few days but hoping I will pick up again. Β The real pain on Day 1 seemed to be an instant reaction to Wednesday, with all the other symptoms showcasing the classic ME / CFS delayed response. Have you noticed different symptoms appear at different stages after a lot of activity?

I’m taking joy from the small things – I didn’t have a headache until yesterday! Woohoo!

I’ve taken a lot of painkillers in the last few days, as well as rubbing copious amounts of Tiger Balm on my aching muscles. I’ve been resting lots and taking things very gently.

Gluten free bagel at GreenLine Cafe. Photo by Jess B.

Gluten free bagel at GreenLine Cafe. Photo by Jess B.

Soy hot cocoa, delicious. Photo by Jess B.

Soy hot cocoa, delicious. Photo by Jess B.

But I have also been allowed out! We’ve been out for a couple of short ‘walks’ in my wheelchair (Philly pavements leave a lot to be desired…I’ve very nearly hit the deck a couple of times!) around my sister’s neighbourhood. It’s been nice sunny Spring weather so the fresh crisp air really helped to clear my head. And no walk in America is complete without a coffee, or in my case a soy hot cocoa complete with gluten free bagel atΒ the GreenLine Cafe.

Spring daffodils in bloom in Philly. Photo by Jess B.

Spring daffodils in bloom in Philly. Photo by Jess B.

Also, I’ve had my first donut in like 8 years! A gluten free cinnamon sugar donut, oh my gosh it was amazing!!

My first donut in 8 years! Photo by Jess B.

My first donut in 8 years! Photo by Jess B.

So overall with bagels and donuts, my sister, family altogether again and the lovely Spring weather, Philly has gotten off to a very good start, despite the pain, fatigue and other symptoms, it’s all worth it to be here.

Time for me to head off and rest. Going to try a ‘proper’ walk this afternoon, as opposed to in my wheelchair. I was up to walking for 30 mins a day before the trip, doubt I’ll manage that today, but going to try to walk round the block at least. It’s all about pacing, and taking one step at a time, wish me luck πŸ™‚

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3 Responses to “Hello from Philadelphia! Gluten free bagels, donuts, Spring flowers, pain, tiredness and more.”

  1. E. Milo April 2, 2013 at 5:27 am #

    You’re very brave. I don’t know when I’ll make it back to Dublin again (where I grew up). Good Luck!

    • myjourneythrume April 2, 2013 at 10:16 am #

      Thank you for your lovely comment. I hope I’m brave and not stupid, this illness always seems to want to trip me up! I hope one day in the not too distant future you’ll manage a trip back to Dublin.

Trackbacks/Pingbacks

  1. Flying with ME/CFS: My Top Tips | my journey thru M.E. - September 9, 2013

    […] means? I always try and keep that in mind. In the case of our family holiday in France or a trip to visit my sister in the US, do I wish I hadn’t done these? Hell NO! The happy happy memories of both trips far outweigh […]

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