I almost didn’t write this. It’s after midnight and I’m so sad. My blog tries to keep a positive spin on things, and no doubt I can do it with this article. I don’t feel positive though, so I almost didn’t write this, until I realised that this is the very thing I need to write about. I know I am not alone in this one, and maybe I need to verbalise it to shine a light on this element of chronic illness so many of us battle.
Tonight I sat in my kitchen staring into space, suddenly overwhelmed with a sense of hopelessness. A passing comment earlier by my husband about me needing to get some sleep got me thinking. Why? Why do I need to sleep? I literally have nothing to get up for. Sometimes when my mind passes over that thought I can quickly shake it off with an array of reasons I do have to get out of bed in the morning and have a sleep routine. Other times, I can’t shake the feeling that when it comes down to it, what time I get up tomorrow doesn’t matter at all because I have nothing that needs to be done that day. There are things I can choose to do, but not things I need to do like there used to be when I went to work. I’m not on anyone’s timetable now, no one depends on me being somewhere, I’m not being paid to get up and get out there. Sounds like a dream to some I’m sure but when it isn’t your choice it is a dark and lonely place for your mind to settle.
I’m exhausted right now, I’m battling an infection and recovery from my surgery isn’t exactly going to plan. I’m so frustrated. I made hapless plans to achieve great things in 2019, and two weeks in it feels as hopeless as it did last year. Now don’t get me wrong, most of the time all of this is a passing thought I can easily shake. Sometimes though, I can’t drag myself out of this place so quickly and need a moment to just feel what I’m feeling.
I made some goals for January, feeling motivated at the start of a new year. They’re achievable goals in theory, and I absolutely have the motivation to do what’s required. My body, however, is once again failing me miserably and I am bitter about the fact that I have the motivation and determination to achieve awesome things; but I’m trapped in a body that will not allow me to physically manage them. I want to scream.
I know many people with chronic illness will relate to this, and I just wanted to say you’re not alone. I don’t have any answers or great wisdom to share, I just wanted to write this for anyone who has felt this way and let them know I get it. You’re not alone, I know how much it hurts your soul when your body lets you down.
No-one should have to feel this way. A bright mind, with big ambition and a passion to try and make positive change, trapped in a body that doesn’t work how it’s supposed to. I am 30 years old, this is supposed to be my prime. Yet here I am, with two degrees, a heap of work experience and big dreams, left staring at a kitchen wall knowing that in that moment none of those old dreams matter anymore. Being determined, committed, or hard working, will never be enough. Not anymore.
I’m not sure how you are supposed to get passed that? I am not sure at what point it will stop hurting? The moments where I wallow in this hopeless place are thankfully rare, but they still happen. Too often I feel trapped by the life I now see before me, too often I am overwhelmed with the feeling that I don’t matter now. I know it’s not true, but I hate feeling like I don’t bring anything to the table anymore. I mean that in both a metaphorical and literal sense, because even if I can accept that just existing is enough, it doesn’t pay the bills.
I’m blessed of course, Dave works, and we manage, but I worry about how we will manage when there are more mouths to feed. Then I wonder if I’ll be a good mother if we are blessed enough to have kids. What if I fail at that too because my body fails me? What will I do then? I can’t imagine not having children, I can’t wait to be a mum and Dave and I feel ready for that next step. Will our children suffer because my body is broken? I know in reality know they won’t, I know so many women with chronic illness who are incredible mums, but because I’m not there yet I’m scared of failing. That is another issue though, and I digress.
My life isn’t what I thought it might be by this point. I know it sounds like self-pity, and I know so many people have it much worse, but it still really hurts. I want to say to anyone feeling like this, it’s okay to feel it and just because someone else has it worse, it doesn’t mean you can’t grieve the life you lost. Adjusting to the changes that come after you get ill is so difficult, it’s been five years and every time I think I’m doing okay, something small happens and it breaks my heart all over again. I sometimes wonder if there will always be moments where my heart quietly breaks over something so seemingly insignificant. Maybe grieving for your health really does last a life time and you just learn to live with a partly broken heart. I may be wrong, I’ll let you know in another five years.
I mostly wrote this post for me, it’s therapeutic to spill it all out, but I’ll share it in case it does help someone else feel less alone. After writing this I will pick myself up, dust myself off, get my positive head back on and get back to building new dreams. I know how to, I give myself pretty great advice and pep talks at times. I know this isn’t the end for me. One day I’ll look back at these years when I’ve come out the other side and I’ll realise what I achieved despite a failing body and be proud that I didn’t give up. For now, I’m being gentle with myself and reminding myself that no one can be strong all the time. It’s okay to cry, it’s okay to feel lost and it’s okay to be angry or frustrated. I’m a big advocate of a good cry, sometimes we need to just feel crap and get it all out, before we can move forward and find the best in tomorrow. After all it’s a bad day, not a bad life, right?
One of my favourite quotes of all time is: ‘Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow’. Days like today, I think about that quote and I remind myself that it’s okay to be sad. What matters is that I don’t give up, and even if it’s only a whisper at the end of the day saying ‘I’ll try again tomorrow’ then that is enough. I am enough, and you are too.