My lockdown love affair

When lockdown hit, I was in the best position. Unable to go anywhere, unable to see friends, unable to go out in the car. Being unwell this was my new normal, but now everyone was with me. I was under no pressure to keep up appearances, there was nowhere I needed to be, no-one coming to visit, no-one to cancel on if I couldn’t make it, no rearranging of appointments. I could do as much as my body would allow or as little as I liked and it didn’t impact on anyone but myself.

In the beginning, like everyone (see, just like everyone) we stocked up our entertainment stores with jigsaw puzzles, craft supplies, adult colouring, puzzle books, cards, we made lists of Netflix series and films to watch and of course we also set up Zoom. It was all very novel and actually felt like a bit of fun. Of course, there was a very serious side of having underlying health, avoiding contact to prevent Covid. I can honestly say I didn’t feel anxious about this though. I was in my own protective bubble. My partner was furloughed so he could run errands for us. Our supermarket shopping was now being delivered so my partner just had to put it away. We kept our selves to our selves and managed to stay safe. This was the perfect time to get my head around being unwell and being limited in what I could do. I got used to pacing, made up a symptom diary and learned my limits with my new every day life. It still took the months in lockdown to achieve this but I had the headspace to process it all and, with no pressure to be anywhere, I had oodles of time to do it in.

With no money being spent on going out, I decided to grab this opportunity by the horns and try out some new stuff. I was already slightly earth conscious and definitely a cruelty free person. So, I tried out some eco-friendly cruelty-free products. First up, a hair shampoo bar. Now after reading reviews, I knew there was a transition period and that hair will look greasy for a few days but it didn’t matter. I didn’t need to leave the house. I also bought bath salts, clay face masks plus a whole bunch of kitchen scrubbers and cleaners. Now unfortunately my arms don’t like being raised rinsing out the shampoo for the length of time needed so I had to stop using them but it doesn’t matter. I enjoyed trying my new treats out. Pampering myself and learning to relax, just like my OT advised.

I also didn’t feel guilty for sleeping during the day, being laid up watching TV and generally lounging around when I needed, as so was the rest of the country. Ok I was sick and couldn’t avoid resting up but I could pretend I was the same as everyone else. It was great. I felt equal and didn’t have to face being different. But then lockdown started to lift.

Even though we were now allowed to meet people at a distance and could go into shops etc I didn’t feel the same any more. For one, I was worried about catching Covid but also worried about how my body would cope going into a shop. My every day is a feeling of being spaced out and I can barely function some days, so navigating a shop with the new one-way, traffic light and distancing rules was daunting and unnerving.

My first outing was to the supermarket. Mask on and hands gelled. I went in. I had a list with about 3 items on it. It was a Sunday morning. Who knew Sunday morning is THE best time for supermarket shopping? Everything was in stock, apart from toilet roll (he he!) and it was super quiet. I sneaked along the isles trying not to touch or breathe near anything. I gradually made my way around only making 2 wrong way errors, signalled to me by glares from fellow shoppers. I was relieved when I bought my things and left. Next was to tackle a well known coffee shop. I had to actually sit in the car and rest first, who knows what rules they have in there now? My brain just gets in a muddle. The break didn’t work. I went in and got barked at for not putting on my mask, then I walked into a, badly, sectioned off zone. I was very bleary eyed by now, so I took a while to read labels and signage. I just ordered a standard Americano and no food, as I was tiring. I got back to the car. A welcomed outing from the house, but relieved it was over.

Too much signage when you suffer brain fog. (Pic by Aldi, 2021)

Another day we went to the garden centre. Spare time hit me with a bout of green fingers so I bought some plants. I had no idea what I was doing. I looked up some plant types and where they might position in my yard but on arrival none of these plants were at the garden centre. It didn’t say that in the book! I then had to remember how many pots I needed and whether they were to go in sun/shade/windy/sheltered/north/east/south or west facing positions and find plants that would suit, all while navigating the shop. Now this was an experience. I collected my huge trolley and entered the shop. So did 2 women, right close behind me. I stopped in the first isle to look at some Petunias, I remembered I thought purple would suit the house so started to sift through the colours, undecided if I was buying them. One of the 2 women shouted ‘’ooh are they trailing petunias?’’ (I had no idea). One of the plants was hanging down that made it look like it was trailing to me so ‘’Yes’’ I said. The isle was cramped with plants in places and there was no way to get past while abiding by social distancing so I felt I had to make snap decisions while being chased by these 2 women. That’s what it felt like to me. I work at a slower pace to most others so it feels pressured. I peeled off at first chance, into another part of the shop. I now had space to think and then I looked at my rather full trolley and wondered what on earth I was buying. None of this seemed close to what I came here for. Still a quick deliberation and reassurance from my partner and we were done. Again, a much-needed outing but a relief to get home.

As each lockdown has eased and rules become less and less, I’ve realised how safe and inclusive I’ve felt at home. I’ve secretly loved being in lockdown. When my brain is functioning so slowly and I’m floating my way around everywhere, I am speaking to people so deliriously and sometimes with slurred speech. I wonder if they can tell something is wrong. At home I don’t need to deal with anything or anyone so it is more relaxing. Out there, among the public, friends and family there are certain social rules: mannerisms; greetings; cheery banter and also a haste that people expect to follow so when you can’t be like that, you feel you don’t blend in. I also feel vulnerable. Plus, every second I am walking around I am growing weaker and more tired. I have started to feel like all the trouble other disabled people have talked about are slowly becoming my reality. The strange looks, the misplaced judgements and comments of ‘’you don’t look sick’’ or ‘’are you depressed?’’ are starting to appear. Someone once decided ‘’I could work part-time’’ without even knowing what is wrong with me. Most people don’t realise how badly offensive they are.

So, there you go my secret is out… I loved being in lockdown. It was comfortable for a while. Maybe too comfortable? I’m sure I’m not alone.

I feel post lockdown is going to be a rocky ride but hey, bring it on!

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.