The Good

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Yesterday was bad. Like I said, the last three months have been a roller coaster of really bad days punctuated, thankfully, by some respite. Last week on Friday, I was almost as sick as I was yesterday, lying in the same bed, looking out the same window, feeling the same despondency. But I woke up on Saturday feeling so much better. In my healthy life, I couldn’t have believed how quickly an illness could change. You really can be talking about ending it all one day and laughing with your dogs the next. It makes it seem a bit girl-who-cried-wolf, but it’s not, I promise. The bad is that bad and the good, although not that good, is so extremely, completely, acutely appreciated.

So last Saturday… It was freezing, but blue skies and sunny. I’d been inside for weeks and I was feeling very “I’m out of bed! Hello? I feel better! Anyone there? Quick, someone take me somewhere!” My husband was out with friends, my mother and aunt were eating Italian food in a restaurant in Dublin, my best friend was having dinner in our friends’ house in Dublin, my sister was on the town in Paris… I told myself, You were so sick yesterday, you just need to rest , but everyone was doing fun things and I wanted to, too, dammit! So I loaded my dogs into the car and drove (for the first time in months) to the dog park. We only stayed half an hour and I was on alert the whole time, knowing that if they got into an altercation, I would destroy myself breaking it up, but… I did it. And chatted to TWO people. It was great. Here’s evidence:

The next day… I still felt okay! So we went to my favourite place, the cemetery. I rode my scooter and my husband cycled my his bike and the boys ran and ran with big grins on their faces. My nose was running and my fingers were bloodless and numb, but it was so sorely needed. Here are a selection of cemetery shots from the last four months:

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Bowie in August.

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Riley in September.

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Bowie in September.

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Bowie in October.

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Boys in October.

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SQUIRREL!!

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Bowie in November.

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Bowie in November at dusk.

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Riley in November at dusk (he usually moves too fast for me to get a photo of him).

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Bowie in December.

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Where’s Daddy going?

I couldn’t leave this blog festering in the bad of yesterday. My friends are so caring and feel so deeply — thank you to those that have left me messages of support. It means a great deal that you can still offer compassion after all this time.

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This Year: Life, the Universe and Everything.

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Even though I’ve been wiped out for this entire week afterwards, my birthday outing was worth it. The day before, I had found a third-hand mobility scooter (at a third of the price) on Craigslist. I have been looking for one that could handle rough dog park terrain (big wheels, decent suspension, strong motor), but could still be dismantled and put in a car (ie: not the fun Harley-esque one I had my eye on, similar to my friend Jak’s). My husband drove two hours round trip to buy it and I was able to take it to my favourite off-leash dog park: 40 acres of trails, fields and river access.

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The weather was sublime. Actually, that was the only blip in our day: as soon as I arrived, I had to park in the shade, strip off two layers of shirts and have my husband reach up my yoga pants to peel off my compression stockings. Plus, I was drinking hot chicken soup. I was kicking myself for not bringing sunscreen. But, after that, all was well, if a little harsh and bumpy on my bones. This 4-day payback headache I have is probably from jostling my spine on the gravel and mulch (and I won’t mention the horrible nausea that hit me at 10pm and the relentless barrage of nightmares that followed that night because this is meant to be a happy post).

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Big smiles. 🙂

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I couldn’t get a photo, but there were huge blue herons flying into the nests and babies up in the trees.

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My boys playing with a new friend.

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That evening, my sister and her boyfriend came over and she suggested getting take away food from a nearby restaurant, which I hadn’t even considered. So, we ate dinner at the table (as opposed to my usual on the couch with my feet up, reclined) and I had a delicious beef tenderloin and coconut rice. They accidentally put some Gorgonzola on my steak and, oops, I forgot to scrape it off. That was a celebratory taste explosion that I haven’t encountered in 2.5 years.

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“The hills are alive….” Pretend I’m spinning…

Then, to top everything off, two days later, I got a visit from my dear friend, Z. She came bearing flowers and a bag of gifts for me to open and, the best part, her little girl, whom I consider a niece. Baby A chatted away, which is all new! The last time I saw her she hadn’t quite found her words around me. What a treat.

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42, the answer to the Ultimate Question of Life, the Universe and Everything.
It’s going to be a good year. I have faith.

Kinda.

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Another Day In The Life

This illness takes away every bit of independence and control. My day today was ludicrous and stressful. In my mind, it is filmed in high-speed to the Benny Hill Show music.

I made three back-to-back appointments (ophthalmologist, therapy and blood draw), which is obviously foolhardy, but, if my husband is going to come home to ferry me around, I want to maximise the time. However, I didn’t want the day to be longer than it needed to be because it takes such a toll on me, so I tried to schedule the appointments as close together as possible. The ophthalmologist’s office assured me 3 separate times (because I rescheduled 3 times and asked each time) that a 2:20pm appointment would have me out by 3pm because the doctor is exceedingly timely and expeditious. I google mapped the distances between clinics and called LabCorp to ask about parking and the name of the building and what floor they were on so I was completely prepared and wouldn’t be wasting time wandering.

But, first on the schedule this morning, our cleaning lady (a luxury we obviously can’t afford, but we decided we needed once in a while to alleviate the burden on my husband) was meant to arrive at 9am. That’s very early for me, so I had scheduled the day yesterday to do nothing but organise the house in short bursts (because you actually have to tidy the house for the cleaning lady): putting away clothes and paperwork, moving blankets, yoga mats and dog beds etc. with rests in between. It takes an extraordinary amount of energy for me to do this, mainly because it involves walking things from one room to the next and up and down stairs.

Our cleaning lady is scared of the dogs, so I locked them in my bedroom with me this morning and listened to them whine to get out for an hour and a half before I texted her. I got no answer until noon, when she said she would be here at 1:30pm. She wasn’t. And my husband wasn’t home by 2 to take me to my appointments, so I stood by the door, having eaten, showered, dressed and meditated, holding my handbag, unsure of what to do. He arrived shortly after, not too late, just late enough that I was anxious. We got the dogs’ leashes on (because we had to take them with us because we couldn’t leave them home with the cleaning lady) and I hid the key for her so she could get in while we were gone.

We drove like a bat out of hell, but traffic was worse than normal. Not terrible, just bad enough to make me anxious. I got there on time, but I was still sitting in the waiting room 35 minutes later, so I had to reschedule. They said I could come back after therapy at 4pm, but the blood draw was at 4:15, so I had to reschedule that, too– to 5pm, their latest slot.

On the short drive to the therapist’s office, I was starving, as usual, so I quickly ate an apple and a bunch of plantain chips. Then I had to stand in line at reception for a full 10 minutes (exhausting) and then sat in the waiting room for another 10 minutes, wishing I had taken my time eating rather than inhaling without chewing. By the time my therapist came to get me, it was 3:15pm — not too late, just late enough to make me anxious about the appointment going over time and thus causing me to be late for my rescheduled ophthalmology visit.

I was close to tears from watching the time tick by, the stress of the day, rushing around, not being able to drive myself, being let down by cleaning lady, husband, receptionist, late doctor #1 and #2, having to schedule these appointments in the first place, having to schedule them close together because I can’t handle long outings, having to reschedule 2 out of 3 of them, trusting the ophthalmologist clinic that said 40 minutes would be enough time when I know better… so, I spent 3/4 of my therapy session ranting about the day and how frustrating it is to have no independence… and then ranting about how the day’s events were impinging on my precious therapy time! I have shrinking to do, dammit.

Of course, therapy ran late, so we drove like a bat out of hell again to the ophthalmologist, got there at 4:10 aaannnd… at 4:50pm, I was still waiting in the waiting room. Of course. So I had to call the lab and completely cancel the blood draw. What a farce!

The good news is, the different pressures in my eyes seem to have resolved, so I’m no longer considered a glaucoma suspect. The doctor wants me to try Restasis for the next 6+ months, plus steroid eye drops to address the ongoing dry eye/blepharitis/lid muscle spasms/styes/grittiness/goopiness/floaters/blury vision. Yay, more prescriptions and protocols!

Through all of this, my long-suffering husband and dogs waited in the car, but, the other good news is, he took them to the park while I was in therapy and we got to come home to a beautiful, clean home.

And then I got to do this:

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Aaaahhhhh…. take me away…. 🙂

You Make My Heartbeat Mo Mo More…

I’m a few years behind the times here, but I finally bought a heart rate monitor. I actually ordered one from Amazon ages ago when I was looking for a pedometer, but wound up returning it because I didn’t want to deal with the chest strap and bulky watch. Little did I know that it could be a very useful tool in managing ME. So, after watching this video made by Dr. Nancy Klimas, director of the CFS Clinic in Miami, I decided to buy another one with the goal of increasing my fitness level and muscle tone ~ carefully, over a long period of time. Apparently I still wasn’t convinced it was going to be a good investment because I went for the cheapest option with decent reviews and got this monitor made by Pyle. I don’t want to go to the trouble of returning it again, but, be warned: it is huge. It’s working and I’m managing to use it with consistent results, but the chest strap – as tight as you can make it – slips down a lot and I know there are straps and watches made for women out there. I wish I’d researched a bit more.

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You can see all three of Dr. Klimas’s videos and get more info at the Exercise Group page created by Dan Moricoli of the ME-CFS Community website (you might have to create a username and password to access it). If you are interested in more details, I recommend you read this article by Bruce Campbell and this post by Sue over at Learning to Live with CFS.

The upshot is, people with ME/CFS should stay in aerobic “exercise” because, once your body goes over the anaerobic threshold, it is using energy pulled from the muscles and this can cause post-exertional malaise. If you can’t afford to fly to Florida and get all the fancy testing, you can roughly calculate your anaerobic threshold as 60% of your maximum heart rate with the following formula: (220 – 50) x .6 For me, that is 108 bpm.

What I have learned in the last week of wearing the heart rate monitor is amazing. I set the alarm on the monitor to go off when I hit 105 bpm, which, it turns out, is a lot. Lying down, my heart rate is in the 60s. Sitting up, it is in the 70s. Doing any movement puts it in the 80s and 90s. The over-105 alarm goes off every time I stand up. It doesn’t stay up if I continue standing, but it takes a few minutes to come down. The alarm goes off when I do anything to do with laundry ~ the motion of reaching down, pulling sheets out of a washer or dryer jacks my pulse up and keeps it up. I’ve started to do laundry sitting on the ground, moving my arms carefully (luckily, we got front-loaders last year). The alarm goes off every time I climb the few stairs to the bathroom and, surprisingly, EVERY time I pour a glass of water and drink it. I don’t know if it is the action of pouring from the filter jug or lifting the glass to my mouth or swallowing or all of it. That’s some serious exercise! Whenever I take a bath, my heart rate stays high for a very long time afterwards. I drink a lot of water in case it is caused by low blood volume, but it doesn’t seem to help. The flip-side is, I can walk my laps around the garden without going over 100 bpms ~ as long as I don’t move too quickly and take little breaks. I’m still only doing 3 or 4 laps a few times each week. I CANNOT WAIT until I am able to take a proper walk. I just want to be able to walk for half an hour straight. In the dog park. It would be glorious.

If anyone has any experience with using the heart rate monitor program for ME and can give me advice, I would love it. I’m trying to figure out where the parameters are… I guess I just have to figure it out the old fashioned way: if I crash after activity, I did too much. My “better” days ended on Easter. I’m not feeling terrible, but I’m not feeling good. If those days of slightly-more-strength came back and stayed back, I could see myself working again. Maybe even thinking about life every day and not the incessant head-to-toe analysis of what my body is doing.

Note to E. and my brother T.: name that tune before you look: Title Credit.