#pacing

A morning among the Cumbrian hills

It was 8pm and my partner announced he wanted to do a bike ride at Cumbria in the morning. We sometimes have a day where he goes off cycling and I walk the dog. This would be fine only I’m still tired from a weekend with family and can’t function to make any decision. I know we have no plans for the rest of the week so I can rest after. Convinced I’d feel some kind of normal, once I got there, I groggily decide to go.

Now when I was well, I’d be very organised. I’d have a walking route planned, sandwiches prepped, extra layers packed and a full itinerary to fill up my time. My hazy mind couldn’t think to read a map right now and I knew I was too tired to walk any distance so I concentrated on what I needed to get me through the day. I found it easy to make decisions as everything just looked like I needed it…folding chair, blanket, thick coat, thick top. If it felt like it would be cosy, it’s going in. My partner did have to stop me when I tried to convince him the reclining sun lounger would fit in the van though. I also took shorts and sun cream as it was meant to be sunny. I grabbed last night’s pizza because I’m not spending energy making fresh sandwiches, and anyway who doesn’t love cold pizza? Plus, I’ll be on my own for 4 hours and I’m not sure I could function to navigate the café. I also needed entertainment which for me is my camera for nature and wildlife shots. Not that I ever see anything when I actually have my camera on me. If I don’t take it, the entire animals of Farthing Wood appear before me. Yep, always the way.

Van packed and off we went. The first few minutes of any journey usually has my brain going through the list of items I’ve packed and searches for anything I may have forgotten, but today brain fog prevents me from doing this so I give up thinking and watch the countryside go by, trying not to slow blink too much as I may just fall asleep. Then half way I wake with a startle from my haziness as I remember with a gut-wrenching slump…I’ve not packed my walking boots! My brain searches for some relief from the horror of the moment. What am I wearing, what am I wearing? (Looks down). Oh no, open toe sandals! Oh, I can see it now, picking out stones at every step. As if my every step needed this. Too tired to continue thoughts on this saga I decide it will just have to be ok. It is at least dry weather today. On with the journey my partner laughing at my mini drama to myself. Wait until he forgets his shoes then we’ll see who’s laughing.

We arrive, the weather is overcast but warm and more importantly, it’s dry. It’s the first time I’ve actually attempted a day out while feeling so spaced out and it felt very odd. I knew where I was going but I felt a bit empty. No map. No circular route. I had to just accept the fact this was all my body could do today. It wasn’t far to be able to sit on some rocks and rest while Kita ran around the field so we headed off.

That smile. Kita just loves being off her lead.

It was harrowing to see other people going off on their bikes and even other walkers got me envious. I’m not one to dwell with ‘’I wish I could…’’ thoughts so I tend to entertain myself with musings of what they may be doing instead of what they’re probably doing. I passed a couple all geared up with backpacks the size of a single bed. Instead of assuming they were going off on an exciting adventure exploring rocky hill sides, winding through enchanting forests and witnessing spectacular views, before sleeping romantically overnight under the star-studded sky. I told myself that it won’t be that good a time. For one they don’t appear to have a map, that means they’ll probably get lost, then they’ll argue and fall out. Then when they tetchily make a decision which direction to walk in, it’ll be the long way. Heads down in anger, missing the views, to only walk in circles in the middle of the forest which now becomes more enraging than enchanting. As they make their way in awkward silence to a decent spot for their pop-up tent, they are both so tired from walking and too stubborn to say their apologies, they resort to grunting at one another over their pasta and sauce before finally settling down on the hard ground and shiver themselves to sleep. No romantic goodnights. Even the stars dare not show themselves. Yeah, that’s exactly how it’ll go. Meanwhile, I get to stay here sitting in peace and comfort. Not that I ever wish ill fate on anyone, it’s just a way of thinking to myself to amuse and busy my mind.

After a little while sitting enjoying the peace and quiet we head back out the field. I decide I want to explore some woods I have passed before but never ventured through. They are on the way back so I took my chance. I wander around them revelling in my own little off-piste adventure, taking some pics along the way. The woods aren’t that big or really very exciting but it was enough for me. I head back feeling quite pleased I did something I wouldn’t have done if I wasn’t sick. Small gains. I need another rest now though so I went and found a place by the river. Kita was impatient by this time and if you know Akita’s they don’t sit still when they get bored so she insisted on splashing me by paddling in the water. She then kept wandering off using full stretch of the retractable lead and pacing around, using me like I was the stick she was tethered to. After a while of this I gave in and we walked back to the van.

This rock kept Kita amused for a few moments while I, the tethering stick, could rest.

On route, a passer-by gave a cheery hello and commented on how good looking my dog was. ‘’Thank you and yes she knows it’’ is my go-to reply. We get talking but I’m growing weary and, not wanting to explain my illness, I try to end the conversation as I can feel my voice fading and the slurring beginning. I simply say ‘’right, well, I better get back, I’m meeting someone’’ (I have over an hour to spare but it’s not a complete lie). They don’t seem to have heard me and continue talking. I resort to now slowly stepping away, this seems to work. I must remember this one for next time. I’m relieved and tell myself not to engage in conversation with the next person.

Back at the van, ready for lunch and my pizza tasted amazing. It was soon gone though. One bite and every meal seems to vanish these days.

I was wondering what I could do next. At this point I was sat outside on my folding chair at the back of the van in the car park. This felt like an odd place to be and passing cars probably wondered why I was sat there and not in the park. I couldn’t at that point face making it to the park. I just needed to stop and rest for a bit. So, I did. I kept in mind this is what I need to do right now and not go do something that would harm me for the sake of looking like I blend in. Plus, the dog was now asleep and at 30+ kg she is no light dog to get moving. No, we were quite happy resting here in our awkward looking place. A little while passed and I felt a bit better. I still had an hour before my partner was due back so I took Kita and we sat by the playing fields, people watching and yes more musings. The sun had come out by then and I was in a proper sun trap, the warmth of which I could feel wrap around me and warm up my bones. I felt like I was being healed by nature. Bliss. Unfortunately, after about 20 minutes this made me more tired and I really started to shiver and lose a sense of self. I literally could feel the energy drain from me. So, I got myself to the van, blanket down on the hard floor, Kita laid next to me and we both slept until my partner returned.

I love the van. I think everyone with this illness should have one. It has blacked out windows so is totally private. It’s also warm and big enough to stretch out in. Somewhere to lay down when having a day out is a must when unwell, it means I can at least get a bit of energy for the rest of the day. After a sleep I do feel better, well, back to my baseline. We grabbed a drink and shared flapjack from the café before heading off home.

So, that was my day out. There are many like this in my life now. Before I used to look forward to a long day out morning to evening with hours of hiking or mountain biking but now my day is all about where I can find my next place to sit and rest. Boring for some and I partly agree, but I’m learning to enjoy a slower pace and having my camera helps. I’ve always enjoyed nature and now I get to focus on it more. It may also seem like a lot to go through for less than 1 mile of walking but it is far better to go out and see the world than to not leave the house. For me, the mental gains far outweigh the losses.

Two views from the new to me woods.

It all started when..

Every night I had the best sleep yet I woke up like it was 3am. Drowsy. I was ready for bed again. It was always 3am, every minute of every day. So spaced out and having to dodge the feeling of needing my bed. At best I was able to hold a conversation and maybe complete at least one taxing thing in the day. At worst I was clumsy, forgetful, couldn’t function, slow reactions and slowly crashed out into a deep sleep as soon as I hit my pillow. Every move took my energy away. I love the great outdoors yet the last ‘normal’ walk I did was just 6 miles and I felt very weak on the way home. After that, the last bike ride I did was 14 miles and a ride I would normally class as easy. I had to stop, every pedal stroke was heavy, my body ached. I called my partner but he was at work. I just couldn’t face the big hill I still had to climb to get back home. There was no alternative route. I got off and walked, grovelling. I never walk, it was against every fibre of my whole being!! Something was very wrong!

Fast forward and I was referred to an Occupational Therapist (OT) who told me I had this thing called fatigue and I must stop my level of exercise or I could make myself very much worse. I was stumped. I couldn’t get my head around this…

Me: “But I’m fit enough, I’m used to doing 10-mile hikes up big hills and this walk is flat” I argued.

OT: “No, don’t attempt it” she shrieked. “You struggled on your last walk and you’ve been struggling on your bike rides, that was your body telling you there’s a problem”.

Me: “Oh!” The very big penny dropped and landed smack in my forehead.

I’ve never had fatigue before so it was a shock to suddenly have to not do the things I love. Apparently when you get fatigue unless you stay within your limits, any form of exercise, regardless of your fitness, can harm you. Many end up in bed for days at a time. What will I do instead? Where will I go? Who will I see? Gosh, I was totally out of my comfort zone now. I was taught how to use Pacing to manage my condition. I like to grab Bulls by the horn, and this was one big Bull, so I grabbed it and made Pacing my new life mission.

Apparently, Pacing is currently the only technique used to help people with chronic fatigue. Getting used to this new way of life has taken determination, oh and for the country to be put in lockdown, for me to grasp it. You see for me I was in the best position. Can’t see anyone, can’t go anywhere. It was the perfect time to get my head around pacing and work my way out of this nightmare. I worked out what I did in my day and how long I could do each thing, then I tried to stay in these limits. Ha! As if it’s that easy. It wasn’t and still isn’t, but bear with me…you see every time we use energy, we spend imaginary money. My high energy tasks cost the most at £10 and my low energy tasks are £2 a time. A healthy person may have £1000 in their daily pot. I’m fatigued so I have £100 per day. I must spend it wisely or I will crash into bed and the more I do before that crash the longer I will be asleep for. It is also good for me to have money left over at the end of the day. This sets me up better for the next day. So, I worked out what my activities cost and then lived my life. Simple? Wrong! It’s soooo hard. I mean it’s just not living a life. Who times themselves watching TV? Who works out how long I went outside for, how far I got to and how I’m feeling? Who times how long I stood and made dinner for before I had to give up and sit back down? And who counts how many trips upstairs or to the kitchen I’ve had? Yet, there I was noting it all down (which also takes my money) and it’s the only way to get through this illness. It took weeks to work out my limits and some stuff fluctuates, making it even harder to figure out. Still keep on keeping on…

The next step is to make up a daily timetable. I’m allowed up to 3 high energy activities per day (£10), a few more medium level ones (£5), the most should be low energy stuff (£2) with some added relaxation time (free).

Relaxation, I mean real actual relaxation, was new to me. It’s things like meditation, sitting listening to the birds, mindfulness, listening to café music. I find relaxing the hardest thing to do. My brain kicks in, like someone put a coin in a Postman Pat ride-on, and it suddenly wants to be at its most active. I lie there trying to switch off to find calm. Every time I reach for my phone in a bid to occupy my mind, and before I know it an hour has past and there goes another fiver! The times I’ve purposely left my phone upstairs or in a random bag as an ‘out of sight, out of mind’ tactic. It never works. I end up using more energy getting to it again. It does get easier though and now I’ve found my own way to relax, I can fill some time enjoying peace and quiet. I personally like sitting outside daydreaming while drinking a coffee. Unless there’s a neighbour chatting, then I can eavesdrop (I can’t help it, they talk loudly!) Otherwise, I’m a serial daydreamer, have been since childhood and all school life. It comes easy to me. I let my thoughts just come and go.

It’s taken time not to feel guilty, but allowing time to relax in my day, is not doing nothing it is complete rest for my body to heal. Peace of mind that doing nothing is my doing something to help myself and Pacing, after all, is the only way to manage fatigue.

See Pacing Menu to find out more about the Pacing technique.