It can be really frustrating when you know what your physical limitations are and others don’t….: chronic illness

I’ve been suffering from my an unknown (maybe close to being diagnosed) illness for close to 12 months now. I’ve been so ill that there are days when I can’t do much without being winded. Some days are better than others though so I like to at by ear. The most important thing for me though is to listen to what my body is telling me. Some days it’s okay to push my limits a little bit. But other days I’m facing a brick wall that if I push ends up putting me in what I call my exhaustion deficit. Because then for days my body needs to recover.

For the past few months I’ve done really well. I’ve taken pride in the little victories and I don’t punish myself when things don’t go well. It’s really all I can do to stay positive until I beat this thing.

To be honest the real difficulty is that other people don’t know my limitations. They are always pushing me to do more. Or wonder why I haven’t done more. And it’s not that I am doing nothing it’s just that I am going a little slower to get there.

This struggle is hardest with my loved ones. I do try to clearly articulate my bad days. Or when I really can’t keep going. And sometimes I don’t know if they simply don’t understand or don’t care about how I am feeling. I play a certain role. I am a caregiver by nature and a natural pushover to my close ones. If they need something or want me to do something I’ll  do it. The problem is some of these things would probably be a challenge even for a healthy person. For someone unhealthy it’s like trying to climb a mountain with no shoes or rope.

I tell them I can’t do it. I’ve had enough. I need help.

But I never seem to get the understanding or the help. And when I say “you don’t seem to understand what I am going through” they say “we do” but they still don’t change their behaviours, or help, or apologize. And that night when my vision blurs, and my GERD is out of control, or I black out, have an unresolvabke migraine as a result,  or vomit from exertion. That’s me suffering and not them. They don’t understand that.

I am a young woman but I have a chronic illness. An undiagnosed one. So there still isn’t much in the ways I can do to make my symptoms better other than taking it easy. When I can’t even do that my symptoms remain exacerbated and then I start to feel down because I wish they would understand.

I know my limitations I just wish other people could learn to understand and respect them.

7 thoughts on “It can be really frustrating when you know what your physical limitations are and others don’t….: chronic illness

  1. I understand this way more than I’d like to! While our loved ones are supportive and caring they also really struggle to grasp how debilitating our illnesses are. They think pushing us is encouraging us when really it’s exhausting us. They will never truly understand what it’s like and we can’t be mad at that – yes it’s frustrating but it would be hard for anyone to wrap their heads around our situations.
    If you ever need to talk to someone who understands – I’m always up for a chat!
    Stay strong.

    Liked by 1 person

    • Thank you so much for this comment! It really made me feel better! It’s like I know that they are just trying to help by trying to push me harder but when I give into that I just end up hurting myself. And since I end up needing more time to recover it ultimately ends up being less productive. But I do understand that when someone isn’t living it they have a harder time understanding it. I also think if I could actually articulate some form of diagnosis that people may have a greater understanding…

      I really do appreciate how supportive you’ve been through all of this! And the same goes for me if you ever want to talk about what’s going on with our situations I’m down.

      Have a good weekend!

      Liked by 1 person

  2. Have you been tested for ME (Myalgic Encephalomyelitis) – Chronic Fatigue Syndrome? I also have an invisible condition (Marfan’s), with two steel rods embedded along my spine; I’ve learned to politely refuse when people want to go on group hikes, or group activities; I have to go at my own pace, and it will be slower and shorter than anyone else in the group. By not going, I avoid the risk of overstretching myself to try and keep up… I know my limitations, but it took years for me to respect them and listen to them, and still know how much to push myself to not “give ground” to the disease.

    Liked by 1 person

    • Thank you for this supportive comment!
      To be honest I haven’t been tested for ME-CFS yet I’ve honestly just started seeing a doctor who is trying to diagnose something. First we are trying to rule out celiac disease or irritable bowel disease. But if my test results don’t show anything this week i’ll run CFS by him because I do have quite a few symptoms on that list as well!

      I think I get what your saying. I’ve come to realize that I just can’t go at other people’s pace. Maybe if I get diagnosed I can return closer to my ‘normal’ but I’ve also come to accept that I might not. I feel like I’ve got to be more like you and respect my limitations more. I feel like I’m trying but I’m still learning about when my body has had enough.
      Thanks again!

      Liked by 1 person

      • I would definitely have your doctor look into CFS with you; I have two friends who have it, and their daily life sounds a lot like what you described in this post…
        The faster you can learn to respect your current limitations and know how to challenge yourself in a healthy way, the better off your life will be in the long run; that might also mean limiting contact with unsupportive people that make you second-guess what your body’s trying to tell you, or make you try to push yourself beyond what you know you can actually handle… It will particularly help when you get it diagnosed, because you can refer doubters to evidence outside of your own experience. I hope you find the solution quickly!!

        Liked by 1 person

      • I will definitely suggest it then. I feel like once I have definite diagnosis i’ll have better control in general and and a better understanding of my limitations. For the most part my family and friends understand that I can’t do what I used to and I think sometimes the problem is they really do think they are helping me by pushing me what they don’t realise is that it doesn’t help.
        I really do think a diagnosis might help people who don’t understand understand and the evidence would be helpful 🙂 thanks again!

        Liked by 1 person

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