I’m thinking back on 2018. As someone with a chronic illness that gets a little worse each year, 2018 obviously had a high number of sick days for me. A lot of chronically ill people call these sick days the “bad days” and the days when they are feeling less symptomatic the “good days.” I am usually one of those people who calls it that. But I flip flop a lot, so today I have decided not to do that anymore. Because if I keep calling the sick days the “bad days,” it would be really easy for me to say that 2018 was full of more bad days than good for me. But that’s not really true. Even on the worst sick days of 2018, there has been good all around me.
In 2018 my legs got weaker, my shoulders got stiffer, and my walking got…limpier. I’ve introduced a lot of mobility aids into my daily life this year: like braces, splints, little foam covers for pencils so I can grip them. I had to go from occasionally using a cane, to occasionally using a crutch, to almost always using a crutch, and that might go even further in 2019. That’s what happens with these kinds of illnesses.
In 2018 I couldn’t really get up and down the stairs to our downtown home anymore. Not independently enough to enjoy my home situation.
In 2018 I had countless appointments with specialists, surgeons, physical therapists, occupational therapists, the list goes on. Those were certainly tiring, emotionally and physically.
In 2018 I spent a lot of days in bed sleeping or feeling too weak to be up and about.
In 2018 I spent another year on sick leave, unable to do the job I loved doing before.
And there’s lots more. Lots of new symptoms that have changed my life either just a little bit and for a brief time, or rather drastically and permanently. A lot can happen to a chronically ill body in just a week, let alone a whole year. I can’t even remember all of it, and some of it was probably a pretty big deal.
And the reason I can’t remember all of it, aside from that illustrating the sheer number of changes that have happened to me physically in 2018, is because I’m one of those people who tries to focus on the good more than the bad. I acknowledge the bad, I am honest about how it can totally wreck things, and I am not one of those “you’ll be healed if you just have a positive attitude” assholes. When bad things happen to people, they should be able to feel those things without being told to buck up and focus on the good. I let myself feel the bad things. But I’m a fairly privileged and lucky person, so on days like today – December 31st – it’s easy for me to sit back and focus on all of the good things that are outweighing the bad.
And the good part of 2018, the very very good part, was the people.
Matthew basically lives his life like an Ed Sheeran song and sweeps me off of my feet when my legs don’t work like they used to before. Oh wait, Ed Sheeran said he CAN’T sweep someone off of their feet then. So Matthew is better than Ed Sheeran. It’s cheesy and I will fight you if you come into my comments saying what a hero Matthew is, but he picks me up when I fall and he gets me things from the kitchen when I’m too tired, and he worked really really hard to get us a more accessible house this year so I could have some independence back. And he laughs with me every day. Ugh god I hate myself right now. Anywho, he is a good husband. And he showed that every day in 2018. (I was a good wife too. *pats self on back*)
I have my friends. They are there for me all the time. They take me for mini adventures when I need to get out of the house. They visit me to watch movies, play games, or just sit and hang out. They drive me to doctors appointments when Matt is working. They are consistently there. I know a lot of people with chronic illnesses tend to lose friends over time. The more you have to cancel events or not show up to things, the more likely you are to not be invited as time goes on. I am extremely lucky and my friends still invite me to everything. They are good people and they make being sick a lot easier. I am bragging hardcore and I feel weird about that, but they just deserve some recognition right now. (I am a good friend too. *pats self on back*)
I have my family. They are loving and supportive and do what they can for me. I can talk openly with them about my problems and feel heard. 2018 was a good year for that. (I am loving and supportive too. *pats self on back*)
I have the right medical team now. For years and years I lived with the dread of being sick and either not being totally believed by my doctors, or just feeling like they didn’t care enough to figure it out with me. 2018 was the first full year where I felt nothing but supported and cared for by my doctors and other medical professionals. They respect that I know my body and my pain better than they do, and they work with me accordingly. I receive physical and occupational therapy through the hospital now, and it’s so amazing to know that I have these health care providers who are thinking outside the box to make my life easier, and who are covered by MCP so I don’t go broke in the process. After all of those years feeling just anxious and isolated by the doctors I was sent to, it’s really life-changing to replace that with hope and positive feelings. I’m so glad 2018 brought me that. (I am not also a good doctor, so I can’t pat self on back for that).
And yes, I’ve spent 2018 off of work for another year. But I am so so so so extremely fucking lucky and I receive long term disability from my employer. I receive financial support so that I can be financially comfortable while I work this very hard and very full-time job of being sick and trying to find a balance for my body, for my mind, and for my daily life. I don’t have the added stress of not having health insurance or a salary while I have to spend all of my days in bed, at the hospital, or some variation in between. Fuck, I am so lucky.
This entire post was sappy and cheesy and braggy. And I apologize for that. But at the same time, I just really wanted to reflect, check my privilege, and remind myself that 2018 had a LOT of sick days, but certainly not a lot of BAD days.
I sincerely hope all of you have a 2019 that you can look back on with fondness. I hope for a lot more good days than bad for you.
Happy new year!