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.

My first entry…

Hello to you all and welcome to my first blog. I turned 40 this year and well my life is very different from what I thought it would be. Instead of having a thriving social life, secure job, married with children, and often sinking a good beer or 3 after an epic mountain bike ride, I am mostly at home resting, feeling so spaced out it’s like I’ve been drugged. I wake up every day, heavy and frail. I’m irritable like a twisty 4-year-old child fighting to stay awake at bedtime, only I’m a 40-year-old who just woke up after a good 8 hours sleep. I drag myself through each day hanging on. A step too far has my brain feeling a kind of pressure, I’m weak yet so restless. I begin to aimlessly wander the house trying to find something to do as my mind searches to satisfy its need to be busy. It’s useless. My state of deliriousness has me crawling into bed under the covers to sleep, like someone has switched my power off. This is me when I suffer a fatigue crash and I spend each day trying to avoid crashing out like this. I need rest and must rest after every task I do. Some of you will have guessed just from that short description that yes, I’m suffering from Chronic Fatigue and I’ve had it for around 3 years now. It has flipped my life completely. I can’t drive, I can’t work and I rarely meet up with friends. With rests, I can manage light jobs in the house and I can go for short walks with the dog. For most people during this pandemic their lockdown is lifting, for those of us with chronic illnesses our lockdown continues and every day is a battle. We must stay positive though and me writing this blog is not only my outlet, but I hope to teach fellow sufferers, their friends and families how to cope on this bumpy journey they call life.

The perfect crash mask

How did I get here? Most of my 20s, I was in a mentally abusive relationship. A term called coercive control, I was belittled, humiliated, my life threatened and he took out my whole being from under me. I’m not going too much into that as it’s over with, but it could be part of the way I am now. Moving on, in my 30s I moved away and started a new life. Things were looking up but then my back had problems and I was in all sorts of crazy pain with sciatica and slipped discs. In and out of hospital, limping around work places, struggling to sit down, struggling to walk too, the discomfort went on for years. I was limited at work, I couldn’t keep friends, it was a nightmare. If that wasn’t enough at age 37 I had my second spinal operation. This would have been fine only I had a severe reaction afterwards. My face swelled, a painful purple-black rash covered my body, swallowing felt like glass in my throat, I had blisters on my gums, my skin peeled, and I had a fever, It was horrendous. The doctor said I was literally being cooked from the inside out, words that stay with me. I spent two weeks in hospital and many more months recovering. Recovery was lots of physiotherapy to build up my strength. I remember that summer trying to ride my bike and not being able to stand up on the pedals. My legs would just shake, I was so weak. I spent time riding around in circles in the local Travelodge car park (I lived in Durham, that car park was the only place it was flat). I tried swimming too, I needed a float as my legs wouldn’t kick, they’d lost all strength. It was in the showers I noticed my hair falling out too. I wasn’t too bothered at first, I knew my body had been through a lot, but as time went on and it got thinner and thinner. I started to look at wigs just in case. Luckily it didn’t come to that, although there were some nice ones and some styles way better than my own hair. This ghastly reaction was diagnosed as Stevens-Johnson Syndrome and Lupus SLE, they can’t say which. I eventually built myself back up but I was never back to full strength and it was during studying for my Master’s Degree that fatigue soon took over. I slowly had to give up my studies, my bike riding, driving the car and my job too. Welcome to my 40s and the wonderful life of Chronic Fatigue. I haven’t been diagnosed with a specific illness yet, but I’m currently being tested and I await my MRI brain scan results. I will be posting my results on here and sharing my experiences as I start this new chapter in my life.

Another reason for blogging is that my friends and family all tell me how positive I am. I have been through such a lot in my life and yet I remain so positive. There’s a big reason for this. You see I had a break down after that terrible relationship years ago. Panic attacks, mood swings, I was deathly quiet for a time and I lost trust in people. A counsellor confirmed I had PTSD which I had help with. I vowed never to feel that way again. And so far I haven’t. It is not easy but I have a few tricks up my sleeve which I will share as my blog continues.

By the way, my entire life hasn’t all been doom and gloom, I did have a great childhood. I was always out and about with family and I had a big circle of friends. My 20s may have had its rough times but I also was introduced to mountain biking and road cycling and this became my hobby for the next 20 years. I’ve ridden to some amazing places in the UK and abroad and met some fantastic people a long the way. And during my 30s I was in a lot of pain but I still managed to study, albeit hobbling around campus. I’m proud to say I gained a first class BSc (Hons) Sport and Exercise Psychology. I’ve learned a lot from my degree and from my own experiences so any advice I feel can help, I will post. It is important to me that this blog provides some advice and support to keep us going forward.

Invisible illness

Before I begin here’s a little tip, if you struggle to read… use a ruler or similar to cover up the above and below sentences so you can only see the one sentence you’re reading. My mother told me this one and it can really help when my head and eyes strain.

I also aim to lighten things up a little, I mean how can I not talk about this thing we call ‘brain fog’? It’s hilarious! This one time the word toaster completely left my head…enter the “toast machine”. Wow, I just couldn’t find the word for toaster. Oh and another time I adamantly asked my fella to put the clothes in the oven to wash them. I mean where do the right words go? They just leave our heads. You may also read some quirky stories of my dog Kita the Akita who’s sassiness never fails to amuse me. Just the other day she sneaked into the visitor centre at the local park. She just gets a scent for food and scampers off on a mission. It’s like the target is set and someone pressed the fire button, all recall lessons become defunct and nothing will stop her.

Well thank you for reading so far. They say “life begins at 40” so yes, I am poised waiting for what’s to come. I hope you continue to join me on my journey as I live and share my life with chronic illness and all the carry-ons that it brings.