Lockdown

2020 is not how we planned it, is it? Not one person could have predicted how this year was going to go and, let’s be honest, I doubt many of us can predict how each week is going to pan out at the moment!

Lockdown 2020 taught many people many things. We were all forced to stop, take a rain check, have more of a work life balance, take time to check in with family and friends more often, play games, enjoy nature, take up new hobbies.

For some, and what I’m focusing on today, it prompted them to have a deeper understanding of what life with a chronic illness is like. Having restrictions put on their lives. Having to cancel holidays. Having to cancel birthdays, social gatherings, concert tickets…the list goes on. Even the wonderful Miranda Hart spoke out on our behalf!

At first, I took real comfort in the fact that for the first time in many years, I WASN’T missing out on things because no-one else was doing anything that I had to miss, or cancel at the last minute. I didn’t have to feel that pang of disappointment in missing out or being left behind. Everyone, on some kind of level, was experiencing what my life had been like and that made my daily life, selfishly maybe, much easier. Of course, I really did feel for everyone because I know what that feels like but of course there was always that element of, once this is over, you’ll absolutely be able to do all of those things and it’s important to remember that the majority of the things you’ve cancelled, haven’t been cancelled, just postponed.

But for me, this year, this lockdown has become one of the toughest times since I’ve been ill. The hidden aspects that people can’t see have been the worst ever. The pins and needles that I flippantly mentioned returning have been worse than ever. They’ve become what feels like a prison sentence. So excruciatingly painful that I have only left the perimeters of my home 5 times in over six months and those times have only been for short drives and home again. I haven’t even been able to sit and enjoy our garden. I can’t bear a mask on my face but I don’t feel safe without once so that leaves me stranded too. I have, quite literally, been inside my home for six months. The one time I tried to hang my washing out in the sun, it brought me to tears. The sunlight on my skin feels like molten lava. My sleep is worse because if I turn over and have pressure on my skin, it’s like someone has grabbed my skin and pinched every part with all their might.

And because of this, I’m afraid to say I have become a little bitter. Lockdown eased and some level of normality has resumed for many. A different normal but a normal that’s more fun and social. Only now, I see my little community online feeling battered by this because, oh how quickly some forget. When the whole of society was in lockdown it was easy to relate. To feel sorry for. To empathise. To find time.

For me and for many like me, we are still confined to our homes. Yes, I am terrified of covid, not because it could kill me strangely enough, but for the gut wrenching fear it could make my illness worse. It terrifies me that young people, my friends, could get it and have their lives changed like mine has.

But regardless, covid or not, I still wouldn’t be able to resume my life before; pins and needles for one, but on another note, covid has set me back by what feels like years. Because I haven’t seen people, socialised, been out anywhere, the fatigue is more plaguing than ever. I’m quite good at covering it now but I am well aware that I am beyond irritable a lot of the time, I’m not able to wash my hair and shower as often (dry shampoo is my new best friend). My pacing is having to be to the extreme. Whatever I do, I am doing at home, typically I am up and out of bed for roughly 9 hours out of 24 and within that I rest every afternoon. I pace my activities, typically without any music or television because my brain fog and concentration can’t cope with the overload. Having to meticulously plan out my week – if I’m having visitors, can I bake that cake. If I make that bunting, can I see that person?

Life. Is. Hard.

I have never felt so alone. So isolated.

Tomorrow, Monday 5th October, marks five years since I had the asthma attack that sparked all of this. It seems almost impossible that five years have passed, impossible that I am still so far from where I want to be.

Contrary to how this blog may seem, I am not a jealous person. I am not a negative person. I am just a desperate person, someone who is literally treading water to stay afloat. But as mum has pointed out to me, no-one ever gets to see this side of me because if you come to spend time with me or text to check in, I’m not the type of person to moan or complain or say woe is me. I’m not going to harp on about my problems and feelings because I know everyone has them and there are so many much worse off than I am. I will make you cups of tea, sit and listen to you, smile and bring you treats. You won’t see the before and after effects. Plus, I haven’t written a blog in a while which tends to be my outlet and way of keeping people updated and aware of what’s occurring.

And I have to, and do, remind myself of how lucky I am, because, as always, my life buoys have been my lockdown buddies; my mum and dad. My constants. The ones who hold me up, make me laugh, hear me cry, see my pain, feel my frustration and take it all on board even though there is quite literally nothing anyone can do. And that must be beyond difficult for them, to feel helpless and I hate that I do that to them. Nothing is easy.

And therein lies the fear. Everyone kept saying during lockdown and even now, “it would be so much easier if there was an end in sight.” And of course, yes it would. But, regardless of how long this goes on for, social distancing, mask wearing, hand washing, life postponement, it WILL all come to an end. But for me, and many others like me, we will still continue to not have an end date, and that is utterly soul destroying and at times, unthinkable.

So, we will keep smiling and keep battling and being our own self advocates and keep hoping that one day things will get easier.

But if you aren’t in lockdown anymore, try and hold onto what it taught you. It’s a life lesson we hopefully won’t ever have to live through again but could influence many generations to come.

#hairyhannah

Advertisement