Run, Rabbit, Run!

A Runner in the Park © Jess Bruce 2015

The past weekend marked another big milestone in my journey thru ME/CFS.

It has been four and a half years since I last went to the gym. And on Sunday, I went for a run! Rather than hitting the treadmill, Mr B and I headed to our local park and ran around there. It was a crisp Winter’s day and the park was full of Sunday morning runners, five a side football matches and kids whirling around on scooters and bikes. It felt wonderful to be part of it.

As I’ve said in previous posts, walking has been a key part of my recovery. I have gradually built my walking up from literally a couple of minutes during some of the worst times of my ME/CFS to most recently walking 4.78 miles on Saturday with Mr B. Walking a few miles has become part of mine and Mr B’s weekend routine. As on Saturday, it usually centres around walking to a cafe for tea (and of course Jess friendly cake), having a sit down and then walking home. I love it.

Me! Running! How many bright colours can one girl wear?! © Jess Bruce 2015.

Walking is very much in my ‘safe’ activity column now. I can do it without ill effect, without triggering ME/CFS symptoms. So on Sunday we decided to step it up a notch and actually go for a run! Now to be clear, I’m not talking about a long run, or a fast run. I’m not trying to pass off any great sporting feat, but for this ME/CFS survivor, who just 15 months ago had to use a wheelchair to be able to go out for more than 20 minutes, anything faster than a walk is an achievement of which I am very proud 🙂

Mr B considers himself a gym bod and fitness guru and so has devised me a programme to start me off running again (I say again, but I wasn’t exactly a runner pre ME/CFS. At most I used to hit the gym treadmill a couple of times a week so that I could eat as much cake as I wanted).

To start my running journey we are alternating a light jog with a gentle walk, doing a minute of each. Using Mr B’s fancy pants running watch (which I struggle to turn on at times…) we set a target average pace of 9 minutes 30 seconds per kilometer. When I walk, I use the Nike Run App to track my distances. and from that I know my average walking speed is 10 minutes 45 seconds per kilometer. So my target speed for my running/walking combo is quicker but not by too much. The aim is to ease myself into running rather than to knock me out at the start line – which I nearly did by deciding to sprint before Mr B had fully explained his strategy to me. He said he was worried at that point that I may not have made it round the park! We are using all the pacing and incremental activity knowledge we have gained over the last few years for managing activity for my ME/CFS and simply applying it to running.

So there we were jogging for a minute getting our pace 30 seconds in front of our 9 minutes 30 target and then once we hit 30 seconds in front we slowed to a walk to let the pace fall back to the 9 minutes 30 seconds target. This pattern also gave my little legs time to recover before repeating the jog! Each jog and walk lasted about a minute each time. Turns out a gentle jog for a minute is well within my ability. I am pleased to report I did not collapse in a heap, turn bright red or have to to be carried home 🙂

In total we jogged/walked 2.12 km in 19 minutes 30 seconds and I absolutely loved it.

My TINY Cherry Bakewells! © Jess Bruce 2015.

My reward was of course cake. We stopped at a local coffee shop on our way home where I had gluten free dairy free Bakewell tarts (yes plural, they come as a pack of 2 as they are tiny!). If I’m allowed that after each run, I will keep on running!

My challenge this week is to go out and repeat the exercise on my own and then next weekend Mr B and I will do it together again,. Depending how I’m doing, we will probably increase things slightly by either upping the distance or the average pace. We’ll do one or the other, not both together. And gradually over time my running will get faster and longer. You never know maybe you’ll see me running the London marathon one day. Yeh right. And maybe there are pink pigs flying outside my window!

I am perfectly content with my gentle jog/walk. I absolutely loved it, yes that was a surprise to me and Mr B too! It felt great to be alive and well enough to be moving my body that bit faster than a walk – I’m not knocking walking, I’m still going to be keeping that going too. I am forever grateful that I’m well enough to be able to walk as much as I like after so many years of being too ill to do more than a short strictly paced walk that would see me needing to rest for hours afterwards.

ME/CFS wise I felt pretty much okay after my run. I feel as I do most days now. So it’s with immense pleasure and relief I can say that my gentle run has not upset the recovery apple cart. Thank goodness. That is not to say my legs feel perfectly okay. Oh no. Walking up and down stairs is a bit of a challenge. I think they are in shock that I required them to move more quickly than a walk and are rebelling! It feels like I have muscles I didn’t know existed until now! But no pain no gain. It will pass and it’s very much normal post exercise soreness rather than acute ME/CFS myalgia body pain. There is a difference. A big difference.

When we got back from our little run, I managed to convince Mr B to do a short yoga for runners cool down sequence with me from Yoga with Adriene. Mr B usually refuses all of my yoga invites so I was very pleased that he joined me on the mat. And I’m sure that the stretching will have helped. Without that, I’d no doubt be even more sore and stiff today!

So now my challenge is to go running again. I have motivation, not least that I enjoyed every minute of it. But more so because my sister is moving home in the summer and wants a running buddy and then there’s that small matter of fitting into a gorgeous white gown in August.

So yes, run Jess, run. You can do this!

ME/CFS zero, Jess a giant win!

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A Walk in the Park

Houseboats on the canal
© Jess Bruce 2014

With the title of this post ‘a walk in the park’ I am not referring to ME/CFS recovery. As we all know by now, a chronic illness is anything but a walk in the park.

No, the meaning behind the title for this post is much more literal. Today I’m going to write about an actual walk in an actual park. Namely Victoria Park, a gorgeous green space close to my home in East London.

Autumn leaves © Jess Bruce 2014

Walking has been a big part of my life with ME/CFS. After an initial time, back in December 2010 and January 2011, of being too ill to move anywhere other than from bed to sofa and back to bed, I have walked most days. When I was too poorly to partake in more active pursuits, walking I could still (mostly) do. It has become a good barometer of how my recovery is going. At the beginning I could only manage a few minutes; a few steps up the street. From that feeble starting point, I built it up. Walking was a key part of my paced activity programme, increasing the time I spent walking in minute incremental increases of literally 1 or 2 minutes. I built it up gradually, oh so gradually, until at my strongest pre Lightning Process, I was able to manage 25 minutes of walking without suffering severe post exertion malaise. There were ups and downs and fluctuations in my walking ability went hand in hand with relapses and set backs that are the bread and butter it seems of having ME/CFS. Before I got sick with ME/CFS walking was purely a mode of transport. It got me to and from the train station. I didn’t see it as exercise. It didn’t push me enough. Running on the gym treadmill, pushing myself as hard as I possibly could was more my cup of tea (that is not to say I was a gym bunny though! I went sporadically).

Autumn trees reflected in the still lake. © Jess Bruce 2014

As my energy has returned and ME/CFS  has lessened its grip on me through this last year, walking has become a staple in mine and Mr B’s weekend routine (and has continued to be a part of my own daily routine during the week). Walking is very much an activity in its own right for us now. On a Saturday or Sunday we walk for a couple of miles and have coffee or brunch out mid way. During our trip to the US back in April, Mr B and continued our walks and one day in San Francisco we managed just over 4 miles – and as you probably know San Fran is not flat terrain! So that was a doubly great achievement for me. Recently my Mum and I walked through East London reminiscing about the places Mum used to live and teach in her younger days. We walked 3.78 miles that day to Stoke Newington Whole Foods where I stocked up on Jess friendly foods (we got the bus home, I was tired and we had too much shopping)! For a girl who a few years ago could only manage walking for a matter of minutes and other wise needed to be pushed in a wheelchair, I hope you can see why I’m so proud, happy and relieved that I am now well enough to walk without debilitating consequences. Sometime after longer walks I am definitely achy and fatigued but it doesn’t last like it used to. I use the Nike Run App to track how far I’ve walked. It’s a great tool to use for pacing yourself both in an ME/CFS sense and an exercise speed kinda way.

Squirrel on the move © Jess Bruce 2014

The other day I took my camera out with me on my walk to Victoria Park, hence the photos peppering this post. The park is 0.7 of a mile from home, which was frustrating when I wasn’t doing as well as I am now. I’d barely get to the park before I had to turn back because my allotted walking time was up / I was tired and could feel symptoms creeping in. But now the distance to get there is nothing. The walk alongside London traffic and on grey pavements through concrete towers is worth it as you cross over the canal and see the green open space greeting you on entry into the park.

Geese on the move © Jess Bruce 2014

Earlier in the year I went on a spa break. One of the activities there was a moving meditation. I had no idea what to expect but it turned out to be a lovely, peaceful and grounding experience. My guide and I walked around the lush grounds of the stately home that housed the spa in silence except for my guide giving me instructions every so often: focus on your feet touching the ground, notice the textures around you, close your eyes and listen purely to the sounds, notice the smells, the colours, reach out and touch the leaves, feel the air on your skin. It may sound utterly bizarre, and I guess it was a bit. But it was such a peaceful, tranquil time and mindfully brought you into the very moment.

Serene and calm duck on the lake © Jess Bruce 2014

I was reminded of my moving meditation experience on my walk with my camera. Photography is a very mindful activity. Seems obvious but I’d never really realized that before. I was purely focused on the nature around me. I was focused on the reflections on the trees in the lake; on the colour and shape of the trees and their leaves and on the wildlife that came out to play whilst I was there: squirrels, ducks, geese, obligatory London pigeons and many other birds for which I’m afraid to say I don’t know the names. If only my Mum had been with me. She is a walking treasure trove of information and would have known for sure! It was a fairly grey damp Autumnal day. But as I turned back ready to walk home watery sunshine broke through the clouds for a few minutes casting beautiful shadows across the grass from the trees.

I’m no great photographer but I did enjoy taking the time to capture the park and it will be something I will definitely do again. It was a relaxing and uplifting experience and I walked 2.5 miles which will have burned a few calories to boot!

Do you enjoy walking? Is it part of your routine? Why not try a moving meditation style walk next time you’re out. I’ll leave you with a few more photos from my walk in the park as inspiration.

Moor Hen on the move © Jess Bruce 2014

Duck keeping watch © Jess Bruce 2014

And the sun finally appeared © Jess Bruce 2014

The Fun of the Flare

My adopted cat. Photo by Jess B.

By the end of last week I was beginning to see the light at the end of the dark flaring tunnel that I’d been trapped in for the previous ten days or more.

This not being my first time at the ME/CFS flare rodeo I was pleased to see that my body was slowly progressing through the stages of the flare.

First comes love, then comes marriage and then comes a baby in a baby carriage. Oh wait. No. That’s not the stages of a flare but the (much hoped for) stages of life. No. The stages of an ME/CFS flare in my experience go something like this:

1. Do too much / catch virus / push self too hard / ignore body’s warning signs etc.
2. Slightly more fatigued than usual. A bit achier than my ME/CFS usual. Lulls me into false sense of security that I am actually not doing too bad / that I coped amazingly well with activity / happening at (1). Tends to last for a couple of days until…
3. ….All hell breaks loose. Acute acute acute pain in joints and muscles. Pain 24/7 regardless of doing nothing. Ankles throb before I even set foot on the floor in the mornings. Pain everywhere. In every joint, muscle, socket, crevice, nook and cranny of my dilapidated body. Lots of tears.
4. Acuteness of pain subsides leaving in its wake heavy, aching, weak muscles which suck every last ounce of energy out of my being. Still tearful.
5. Achiness begins to lighten as day wares on but still bad in the mornings. As the achiness reduces (from dead weight feeling to duller ache) the fatigue ramps up.
6. Sleep. My body craves sleep. But decides that it will wake up ridiculously early just for fun. Oh and there’ll be some night sweats and vivid dreams too (ask Mr B about my random talking in my sleep when things are really pear shaped).
7. In addition to the sheer physical exhaustion there is now a veil of sleepiness. I struggle to keep my eyes open. Each and every time I pop my headphones on and lay down with a relaxation track or meditation. Bam! I’m asleep. Waking up an hour plus later several tracks through my playlist with the horrendous grogginess that accompanies day time napping. Eurgggh.
8. Dizziness and headaches join the party as the sleepiness abates.
9. Feel noticeably better for moments during the day.
10. Feel noticeably better for more moments; for a matter of minutes rather than seconds. Slowly slowly recovering.
11. Feel well enough to do more again. Enter Danger Zone.
12. Somehow, gradually, things keep improving until, as if by magic, I’m back to my limited energy, exhausted, achy ‘usual’ levels of ME/CFS fun. Welcome to my normal.

Our walking patch. Photo by Jess B.

It’s always nice and a gigantic relief to feel noticeably better during a flare; to ‘just’ have ME/CFS again and not be flaring. To begin to be able to resume my normal levels of activity i.e. to spend only half the day horizontal rather than virtually all of it.

But it’s when the relief kicks in that we have to be extra wary. This is the Danger Zone. This is when we have to be super careful and profoundly patient. We have to wait and walk before we can run. We mustn’t push ourselves too far or too fast too soon. None of these traits come easily or naturally to me. But I do my best to listen to my body and follow its lessons at these times because the consequences of doing too much too soon are just too ghastly. Back to stage 1 of the flare. Or worse still, back to stage 1 of an even deeper, harsher, more severe and longer lasting flare. No thank you.

View from my bench by the fish pond. Photo by Jess B.

After over a week inside my apartment with the most fresh air being a few minutes hanging my head out of our window, I was crawling the walls (figuratively speaking, didn’t have the energy to do it in real life. IF ONLY).

So I ventured outside. Not straying far. Staying safely inside the gates of our complex; slowly taking a few steps in the communal gardens to then sit down on a bench and stroke one of the resident cats. Another day, I walked around and around one of the grass areas with my friend who needed to keep moving, pushing her pram to keep her little daughter asleep.

Progress, going out of the complex’ front gates! Photo source: http://www.krupskayabooks.com

And then came the day late last week when I felt ready to venture outside of our complex’s gates. How exciting!! Not really, I only walked for 4 minutes (thanks to my trusty timer) before I turned back but at least I was out! I tried to walk mindfully and slowly. I focused on just putting one foot in front of the other. The traffic noise on our street seemed blaringly loud to my poor ears. And it was cold. During my flare induced hibernation Indian Summer had very much been replaced with an Autumnal chill. Refreshing yes. Others might call it bracing. I just wished I’d got gloves and a scarf.

Very quickly I was experiencing shooting pains in my upper back from the sheer effort of keeping myself up right. My shoulders ached. I felt exhausted. My eyes felt so tired and I couldn’t stop yawning. My arm ached from carrying my water bottle (not a 5 litre extra heavy one I hasten to add, less than 500 ml). I turned back and trudged back to the aforementioned gates. Even with wearing my compression stockings my ankles were tingling and my calves were heavy. My knuckles were throbbing.

I was very grateful to make it home and back to my trusty sofa. Guess what I did? I laid down with my headphones and relaxation track playing and yep fell asleep. Just as I had done an hour or so earlier in preparation for going for my walk. Yes an 8 minute walk required an hours nap as both pre walk prep and post walk recovery. Lets face it, I won’t be walking any marathons anytime soon!

But at least I made it out of the gates! That’s progress. Baby steps all the way.