I don’t know how much longer I can go on like this. No one told me when I got sick that I’d spend more time comforting the people around me than I would being comforted.
Today is no harder than any other, yet I’m at my breaking point. I spent the morning uncontrollably sobbing only to get myself to stop 5 minutes before I had to be at work for the day so I did what I always do – splash some water on my face, plaster on a smile and avoid any questions about how I’m feeling. I don’t know how to tell the people around me that love me and want the best for me that I’m struggling so severely. When I do open up I can tell that it makes people uncomfortable because they don’t know what to say and they want to make it better but they can’t. So instead they tell me how its going to be okay, or throw suggestions at me such as a ketogenic diet or meal planning, as if that is going to be the answer to my problems. The thing is, I know that an anti-inflammatory based diet would help me. I know that meal planning would make my day to day easier. How do I tell these very well-meaning people that I love, that if I could manage a day of meal planning or a new diet plan I would be fucking doing that already.
It’s 8pm and so far today I have eaten a small apple and a nectarine. Not because I didn’t have food with me at work – I roasted vegetables two nights ago to take today – but because I have zero appetite. Other times I will eat that little because I simply don’t have the strength or energy to go grocery shopping or to cook. The fatigue and the pain can become so overwhelming that it takes everything I have to get through the work day and then to spend the weekend sleeping. If I do dare go have some fun on the weekends or spend a day cleaning or meal prepping then I pay for it during the week because I haven’t had enough rest. If I never go have some fun however, I start to feel depressed and my mental health takes a toll. There is no winning right now, not because I have a shitty attitude, but because every little thing is legitimately so damn hard.
Before Lyme I was a fitness coach. I meal planned and prepped every week religiously. I have the skills and the knowledge to do it but back then I never had to think about whether or not I’d have the energy to complete the task, let alone if I’d be able to stomach the food, I just did it. Now each part of that has to be broken down into increments of energy expenditure – make the meal plan, make a grocery list, go grocery shopping, unload groceries, prep food, clean up from cooking, and if I still have enough energy when that is all over then maybe I can even eat what I’ve prepared. If I wasn’t working, which most people in my position are not, then perhaps I could manage this. However, not only have I been told by specialists that it’s completely unreasonable to expect myself to work a full time job or live a full time life, I simply cannot do everything that I am trying to do to keep my head above water and still manage a special diet or anything else on top of it. I am at a point where I am barely even checking my emails or messages because I simply cannot cope with one more tiny minuscule thing on my plate, even if it’s going to help me in the long run. And do you not think that if I could manage literally anything that is going to help me in any way, that I would?!
I go to work, I come home, I try to manage my pain and get some sleep. On the odd day that I do add something to that routine, usually in order to salvage my mental health or to have a clean home or groceries in the fridge, I pay for it in some way later. This is not a life that I would wish upon anybody.
Yesterday a client told me about his trip to the Grand Canyon, 6 days of white water rafting and hiking. That sounds amazing to me and is on my list for when I get better. Although I tried to gently respond with, “definitely when my health gets better!” He told me, “I’m telling you right now, you could do it now.”
Right. Because you know literally nothing about what I experience on a day to day basis, and likely know nothing about Lyme and co-infections, but you’re absolutely right, I look well, and I stand on my feet all day to cut your hair, so I must be well enough to do that.
Are you fucking kidding me?
I struggle to walk 20 minutes. I can do it now, but for a long time I couldn’t even manage that, and I will pay for it later. On my best days, I struggle to play a couple of innings of beer league slow-pitch on a C-Division team. I am barely managing to work just 4 days a week when I used to work 7, and I’m trying to figure out how I can afford to work even less because my life as it is is not conducive to healing or manageable long term.
I am in pain and severely fatigued every single day, its only a matter of degree.
I do a great job of putting on a smile and pretending everything is okay. I can’t handle hearing everyone’s opinions and suggestions and whatever they’re going to say to make themselves comfortable with the situation that I’m in so instead I just tell everyone that I’m “okay”, “fine”, “good”, or on days like today when I’m really not managing well, “I don’t want to talk about it”. The energy that it takes for me to convince you of how sick I am or how much I’m struggling because it makes you uncomfortable so you feel the need to tell me that it’s fine, only adds to my exhaustion and stress. I never understood before how much of being unwell is about making other people feel comfortable rather than them comforting you.
Someone with chronic illness’s breaking point does not happen suddenly. It is the result of an accumulation of repeatedly not having their needs met, often being denied their basic rights, being told that they’re fine or to just try harder, or “well you look good!” and from trying so hard to live an average life while in so much pain and so sick. And I’m there. I am at that breaking point. If I don’t find some new ways of managing, or get some help around the house or with meals or honestly with anything at all, I will end up in a mental hospital. Trying so hard to manage on my own and live my life this way is unbearable. Staying strong for the people around me because their responses only make me feel worse, is unbearable.
People in my position don’t need you to tell them what they should be doing, they need someone to do it for them. Please, tell me again how even though I’m barely keeping my head above water and can barely cope with what I need to do in order to survive, I should add a whole other thing onto my plate because it’s going to help me in the long run. We can’t! If you’re going to get someone in my position to open up to you about how they’re feeling, please just accept what they’re saying as the truth. Don’t challenge it. If they say they can’t do it, they likely already feel bad enough about not being capable, and don’t need to go into detail to try to convince you of their current lack of ability. What they really need is someone who will let them express how they’re truly doing without questioning it, without trying to convince them that they’re better than they actually are. If you can, offer something that you’d like to do for them to help. If you can’t, then the least you can do is be a compassionate ear and not another stress in their life.
I, as most people are, am hard enough on myself I don’t need you to judge me or be hard on me too. And trust me, I know that it comes from a place of love, but if there was something that I could manage that was going to make my life easier or make me feel better, I’d be fucking doing it.