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Oops…I (over) did it again

25 Apr
Flourless Chocolate Cake at Giorgio on Pine, indulgent yes, delicious yes! Photo by Jess B.

Flourless Chocolate Cake at Giorgio on Pine, indulgent yes, delicious yes!                 Photo by Jess B.

Remember my post about planning to pace whilst in Philly from a few weeks back? Well apparently I didn’t quite remember my own advice.  You’d have thought I’d have got the hang of it by now, but no apparently not.

The planning went a bit awry last week. I somehow forgot (again) that I can’t go out, however small, everyday. My body just can’t do that. I forgot this and for a few days I did ‘go out’ everyday.

Tues – Happy hour drink at Ritz Carlton, pushed in wheelchair, total time out 1 hour 45 mins

Photo by Jess B.

Photo by Jess B.

Weds – Italian Market to visit Taffet’s Gluten Free Bakery, taxi there, bus back, walk 4 blocks, total time out 1 hour 30 mins

Thurs – 13th Street Shops (go in 2 shops) and happy hour drink at Vintage, wheelchair there and back, total time out 2 hours

Fri – Delicious gluten free dinner out at Giorgio On Pine, taxi there and back, total time out 2 hours

Photo by Jess B.

Photo by Jess B.

Sat –  Clothes shopping at Ann Taylor Loft and coffee at Rittenhouse Square, wheelchair there and back, total time out 2 hours 30 minutes

Rittenhouse Square in the sunshine. Photo by Jess B.

Rittenhouse Square in the sunshine. Photo by Jess B.

By Sunday my body had given up and was screaming at me ‘if ur not gonna listen to me then I’m gonna make u stop’. And last Sunday that’s what I had to do. I had to stop. I had to take a rain-check on our plan to go out for a brunch and then to have cake at Sweet Freedom Bakery. I woke up feeling distinctly ‘fluey’, exhausted and very achy. My temperature was all over the place. Despite wearing yoga leggings, top, socks, big woolly jumper, dressing gown and blanket, I was still cold sat in our apartment (my mum was in a skirt and top, it was me, it wasn’t actually cold).

I felt so bad messing up Sunday for everyone, especially as it was my parents last weekend before they flew home. But we made the most of it, they went over to Reading Terminal Market and brought me back a delicious comfort lunch of roast turkey and mashed potatoes. Late afternoon, Lou took me out in my wheelchair for a couple of blocks to get some fresh air. The rest of the day I spent resting on my bed or on the sofa flicking through magazines, doing lots of relaxation and watching Parenthood (by the way if you haven’t see Parenthood before I totally recommend it!) I didn’t even do yoga; I genuinely felt that bad. But I’m happy to report by bedtime on Sunday I was feeling much better. The day of R&R was what my body had needed.

It wasn’t a miracle cure and I didn’t wake up Monday morning bright and full of energy (if only…) but I did feel better than I had the day before. Four days on, sat writing this, I’m still ‘more fatigued than ‘my usual’ but significantly better than how I felt on Sunday. I have the rest of the week with no plans, just following my routine and lots of rest before Mr B arrives on Saturday.

As hard as it is not to want to cram loads of stuff in to the ten days holiday I have with Mr B here in Philly before it’s time to fly home, I have learned my lesson. I must pay more attention to my body and not get caught up in the whirl of being in a different place wanting to do lots of things. It’s hard though as I don’t want to be a drag on Mr B’s holiday. Time off from work is precious and I worry that he’ll have a boring time being here with me. But then I STOP and remind myself that Mr B just wants me to get better, that he is more than happy chilling out faffing on the internet, relaxing on the sofa,  that we do have some things planned and that he loves me and would do anything to help me get better, so really I should just  STOP and quit worrying 🙂

Routine, rest and pacing is key to being able to get out and about with ME / CFS. Lesson learned, I will listen to my own advice from now on. And I will try really hard to plan and pace and not to (over) do it again.

To end on a positive note, looking back at what I did do last week, to be honest I’m quite impressed that I haven’t actually had worse after effects. Even though the rest of the time when I wasn’t out I was just in our apartment resting and following my routine, I think I can proudly say that I actually did do quite a lot last week. Okay so it turned out to be too much as I felt bad on Sunday and am still not out of the dip four days on, but the total wipeout was just on Sunday. I take heart from that. Slowly but surely I am winning this battle with ME / CFS.

P is for…..

11 Apr
Get a calendar and plan! Image source: Flickr User: happy_serendipity

Get a calendar and plan! Image source: Flickr User: happy_serendipity


I admit it. I am a bit of a planner.

Okay, actually I am a lot of a planner. In my defence tho, I blame genetics. My whole family are planners, I think it’s in our blood or something. Also, I think being a planner is part of that type A personality, the perfectionist, the striver, the pusher, the planner, that is so common in those of us with ME / CFS (me in a nutshell really).

Mr B is the total opposite of me, very much not a planner. He is a do it at the last minute, spontaneous, relaxed ‘don’t worry, it’ll sort itself out, it’ll be fine’ kinda guy. This is good. It calms my OTT planning tendencies. We balance each other out – well on a good day we balance, on a bad day I get stressed at his ‘horizontal-ness’ and he gets annoyed with my planning, my pushing! But the mechanics of mine and Mr B’s relationship is not the subject I planned (haha!) for this post so enough about that.

Sometimes planning is good, and necessary. With ME / CFS I have found planning to be essential to manage my energy levels and (here comes another P) to pace myself. By planning out my activities through the week I can balance activity with the much needed necessary rest.

As lame as it may sound, I have planned out activity slots for my time in Philly so I pace myself and don’t try and do too much too quickly and end up making my ME / CFS symptoms worse. Lou sat with me and my printed calendar outlines (super cool I know…) as we penciled in activity slots (e.g. go out for brunch, e.g. visit Upenn’s Campus for a walk and coffee e.g. go outlet shopping) making sure we interspersed these outings with several ‘rest’ days for me to pace myself in between. My rest days I spend the day as I do at home, following my daily routine, a little yoga, a gentle walk, light box, blogging, reading, all paced sessions and lots of relaxation time.

Whilst Lou and I were working this all out, we both got a bit upset. I felt a bit overwhelmed by it all (but did STOPs to calm myself) and Lou said she was so sad that I had to do this at all, that my life warranted such planning. It does suck that I can’t just whizz about and do all the things I want to do whilst I’m here like a ‘normal’ person. I can’t go shopping all day, I can’t go to Old City and wander around Independence Mall and then go for out for drinks. I need outings to be no more than a few hours tops and I need days off before and after to rest. ME / CFS does suck and I hate that my life is limited by it. But life isn’t fair. It is what it is. I don’t want to end up in the black hole, so I just get on with things, the best I can.

I also tell myself things could be much worse. ME / CFS is a horrible thing to have to live with but I am eternally grateful for what I do have. I have been well enough to travel to Philly to see my sister. I have a wonderfully supportive family (without whom this trip would physically not have been possible for me) and an equally wonderful and supportive partner in the shape of Mr B, who by the way I am missing terribly whilst I’m here and can’t wait for him to join us here in a few a weeks’ time.

I want to enjoy my life and, my time here in Philly especially, as best as my health will let me. And the best strategy I know of to achieve that, is to P.L.A.N…By ‘planning’ (I’m starting to hate that word) in this way I hope I can enjoy my time in Philadelphia with my sister without exacerbating my ME / CFS symptoms in any way. Am I being naive? Or am I being overly cautious? Who knows. What do you think?  I’ll keep you posted.

A word of warning about planning to help pacing with ME / CFS tho. Don’t let planning take over and don’t become obsessed or a perfectionist about it. A little bit of  Mr B’s relaxed nature is needed to moderate the inner planner’s tendency to get all wound up and stressy with trying to plan down to the very last minute detail. Going too far will only wind up with you stressed out, and we all know what stress does to a body with ME / CFS don’t we?

Also, a little flexibility is needed given the fluctuating unpredictable nature of ME / CFS. You can’t always stick to your plan. Last week I was too ill to go out and do anything, this was especially frustrating as it felt like I’d ‘lost’ a week of my holiday, but it’s what my body needed so no point fighting it. As much as it hurt, I had to scrap my plan for last week, and just start over this week when I’m feeling better. So again a little of Mr B’s relaxed and flexible nature goes a long way.

So I do plan. I find planning essential to pacing and managing my ME / CFS. But I try to keep a little bit of Mr B alongside of me, just to keep me balanced, and not let that pesky inner planner take over too much 🙂

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