So its not the Apocalypse then?

I know. I know. Its been forever since I’ve written…

Here’s the thing. You’d think that the Apocalypse would be a great time to write about life and all the things. As it turns out, even when you think the world is ending, and everyone is walking around with the new plague, even then… You’ll watch Tiger King on repeat before you update anything else in your life.

All those people who tweet about needing time off from busy lives so they can redecorate their houses, clean out their closets, or work on themselves… Turns out they were all wrong, and we are all lazy as fuck and would rather watch ALL OF NETFLIX before doing anything productive. I am totally one of those people. I spent the first four weeks of lock down baking more than I ever have in life, and eating my body weight in chocolate. OK, that is a gross exaggeration but you totally know where I’m going with that. Instagram is filled with hashtags about “quarantine living” and the oh-so-regrettable “quarantine fifteen”. (insert face palm here)

So, I will admit that today, when I find out New Zealand is ending its lock down in three days, today is the day I finally come back to you. 51 days of lock down, and countless before that when I was free as a bird… Today I find my words and rejoin the internet writers population.

I found a meme yesterday that basically describes everything this year (pictured). Its Luis from Ant-Man explaining in his signature elongated style about all the things that have happened in 2020. My favorite part is “murder hornets invading”. Its not a true Apocalypse unless something ridiculous happens.

However a plague that has infected millions is less ridiculous, and fairly scary. I’ve re-watched “I Am Legend”, “Contagion”, and “28 Days Later” a LOT recently.

However, its looking less like an apocalyptic event now that some countries (like the one I currently reside in) are reopening and rebuilding economies. I know for all those crazy flat-earthers this may be a setback in their doomsday plans… Chill guys. I’m sure you’ll get another chance..

So, what does a post-pandemic era look like for me? Well, first of all I’m not an idiot, just cause my country is releasing some restrictions, does not for a second mean that we couldn’t still be overwhelmed with cases. Our borders will remain closed for a long time. Maybe some people will be heading out mask less and go back to their lessened hand-washing traditions -EWWW!!!- but, as someone who is immune-compromised ALWAYS, not much will change for me. I’ll still be careful in crowds, still tense up when I hear a sneeze on the bus, and wash my hands religiously because that’s just plain common sense!

I’ve been to the hospital twice for Infliximab infusions since our lock down started. Each time I was tested at the door of the hospital for fever symptoms, and had to wear masks and gloves the whole time. Which, for those of you who don’t know, is HOURS! Anyone who has worn a mask for longer than an hour feels my pain. As great as they are for slowing the spread of germs, they are also a mini sweat box for your face. I overheat so easily, and after 30 mins in a mask my face feels like its been in a steam room. You’re overheated and very aware of your dental skills, which will only get better after prolonged oral sweat box use. Ugh.

My mom and I have taken walks along the water, and lamented at the emptiness of the city. I’ve gone to the grocery store once a week, which was nerve-wracking as well as infuriating. I became well aware very early on that there are people who don’t give a crap about anyone but themselves, and flout the rules excessively. Also, this will be the last year that I live without a pet. Animal therapy is so very important for my mental and spiritual health.

So, what will I do when my freedom is given back to me in two days? Visit friends and play with their pets! Visit the cat cafe when it reopens. Catch up with friends. Visit my tattoo artist. Order a meal at a restaurant that hasn’t been cooked by me or mom! And… stay at home like I always do because that’s what living with chronic illness has always been for me.

I know, boring, right?

Oh well, at least I am back here with you. Words, thoughts, and emotions, as often as I can, and as often as you care to hear them.

Why is support such a hard word to comprehend?

I’ve been thinking a lot about support recently.

We, the chronically ill, think about it all the time to be honest. We lay in our beds, or sit uncomfortably in our chairs, just wondering when we will have enough.

The ladies in my support groups get it. We can talk all day about the lack of support we get from our own doctors, friends, family members, even spouses. Some of us have been sick for many years, and yet we always are surprised by the painful sting of the lack of understanding around us.

And it’s not like our disease is uncommon. You can find a wealth of information online regarding the disease and its symptoms. Rheumatoid Disease is unfortunately common, I know at least four other people with varying stages of it. So, I find it fairly ridiculous when I’m faced with comments from people I know, saying “Oh I don’t really know much.” Yet, these are the same people that feel the need to lecture me on how I could be cured if I started yoga and went gluten free. *insert eye roll here*

Just for the record (in case you’re a new reader), I have tried so many diets, workout routines, and herbal treatments. I’ve tried acupuncture, CBD oil, vitamins, spiritual healing, magic moon rocks, I mean I could go on for ages…

When you are as sick as I am, trust me when I say this, you will do anything and try anything. I never asked to be sick, this wasn’t in my life plan. Do you think when I was young I dreamed about one day being 37 and unemployed? Do you think I imagined dealing with pain day to day that was so bad that most medications in the world don’t work for me? Do you think I hoped to have such a debilitating disease that it scared away most men in my life, leaving me often single and lonely?

No. The answer is no.

I have tried everything in my power to find something, anything, that would work. So, once again I am here pleading with people to not be bad friends to your sick friends. They don’t need your judgement. You will not and cannot ever understand what they go through day to day, unless you’ve experienced it yourself.

The best support is just being there. You promise to show up, then show up. If you promise to listen, then listen. Be supportive by understanding that what we are going through is something difficult for us. That we didn’t ask for this life, but that we struggle through it every day. And we want to be better.

A women in one of my support groups is realising that her husband is not the man she thought. He is very unsupportive of her struggle, and instead of trying to uunderstand, he checks out. This is not the support we want or need. Spouses and family members may have it the hardest, it’s true. They see us at our most vulnerable, at our weakest moments. The best way to support us through that is to just BE THERE. Don’t make it about yourself, your needs, why it affects you. We know it affects you. But we need you to be strong for us because sometimes we can’t be strong for ourselves.

This last month was a hard one for me. I was in the hospital for pneumonia, an ailment which I’m still recovering from. During the worst of it I cracked My ribs on both sides from all the coughing. It has been a hard month of pain on my body, and a very slow road to wellness.

Because of the multiple hospital stays I’ve had within the last six month, my mother and I decided to move in together. It seemed the best way to give support to each other. We move this weekend.

Now obviously I don’t have to tell you how painful it is to move with broken ribs. Packing has been a nightmare. The last two times I’ve moved I was in a romantic relationship. Now that I am single again I am reminded how hard it is to do things like this without the support of a partner.

So, I took to Facebook and asked if any friends could help me with the move.

I was shocked at the lack of response. During the best times I’ve always had close friends offer help if I need it. But when I call in that offer? Crickets…..

At the same time, a friend who I don’t know very well, stepped up. Not only offering her help, but also that of her partner. It’s times like these when I feel my faith in humanity gets restored bit by bit.

But I’m still disappointed.

I am a giver. I will give and give until I have nothing, if only to ensure the comfort and well being of others. I know this about myself and I know it has been overly taxing on me before. Especially in the midst of me living day to day with the illness that consumes me. But I will always offer help, and give whatever I can. That’s how I was raised.

It’s taken me many years to realise that not everyone is the same. Some people take. Some people are only present when it suits their needs. Some people are flaky. And honestly, some people just don’t care. And it can take you a while to really figure that out for yourself. I’m 37 years old and I still hold on to the hope that everyone cares the same degree that I do.

I’m an optimist, what can I say?

I guess the point to my litany is to be self aware. Be supportive to those who need it. Be a good friend, spouse, family member. Give what you can, not just take. Try to understand what it’s like to walk in the shoes of others. Listen. Care. Be.