Feeling hopeless
I have chronic fatigue and pots, my life has been turned upside down, I am not a social person but need to get this out somewhere, how do people deal with getting these and win you look it up it just comes up with no cure, I have tried what feel like everything by nothing seems t do anything, I am tired of laying in bed all day and sleeping for 15 hours or so
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Hey@Shroomie7! It can be such a tough time dealing with chronic illnesses. I have recently been diagnosed with POTS myself and understand what you are going through, as I have found it quite challenging. It can be really hard to come to terms with their being no cure that is available at the moment. However there are a few things that can help some people and that have helped myself which may be useful! Definitely listen to your doctors and do what you feel is best, but what has helped me is I have found drinking more water, taking electrolytes and being prescribed particular medications by my cardiologist has helped a lot for me personally. I would really recommend trying to access specialists if you have the means and ability to do so.
In the meantime I think it might be helpful to talk to friends or family if you are able to, and let them listen and understand what you are going through. It is such a difficult condition and you are definitely not alone in this. When I was bed bound I tried to listen to podcasts, I would paint, and watch YouTube which were good distractions for me.
Most importantly, try not to be too hard on yourself and be kind because you are doing amazing! I think everyone who has experienced POTS are so strong! Please reach out if you have questions ❤️
I'm really sorry to hear that you’re feeling this way. Living with chronic fatigue and POTS can be incredibly challenging, and it’s completely understandable to feel hopeless at times. It’s important to know that you’re not alone in this, even if it feels isolating.
Dealing with chronic conditions often feels like a never-ending cycle, especially when it seems like nothing is working. It’s frustrating to put in so much effort and not see the results you hope for. Have you been able to talk to a healthcare professional about how you’re feeling? Sometimes getting a second opinion or exploring different treatment options can help.
Finding support from others who understand what you’re going through can also make a difference. Whether it’s through online forums, support groups, or talking to friends who can listen, it’s important to express what you’re feeling.
Remember to be kind to yourself. It’s okay to have tough days, and it’s okay to reach out for help. You deserve support as you navigate this. If you want to share more or just need someone to listen, I'm here for you.
Hey @Shroomie7 I was recently diagnosed with chronic fatigue and POTS so I understand what you're going through right now. I don't have too many words of advice as this is something that I am struggling with a lot right now, so I'm mainly here to say 'hi, I get it, you're not alone!'
I've been very lucky to have supportive doctors and a family that is beginning to understand these conditions. My doctor recommended that I have an ElectrAAte AA and electrolyte supplement, stay hydrated and follow a low glycemic index (GI) diet. Obviously these recommendations are specific to my body and history (just want to make it clear that I am not a doctor and I do not intend to give anything that constitutes as medical advice, nor do I recommend that you take these suggestions as medical advice or without first consulting with a medical profession). It may be useful to discuss options such as these with your own doctor.
Do you feel that you could talk to a doctor about these conditions and how they are affecting you right now? Do you have family or friends that you would feel comfortable asking for a bit more help, such as with meals and cleaning, so that you could conserve energy for other things?
I also know that there are quite a few Facebook groups for people with chronic fatigue and POTS, both internationally and specifically for Aussies. I'm in an Australian one for chronic fatigue which consists of a whole range of information, questions, very relatable memes, support, etc. Could this be something you're interested in exploring?
Here are some resources that I've found that you may be interested in looking at:
Managing fatigue - POTS UK (scroll down to the bottom to 5 tips for managing your fatigue)
Living with POTS - Australian POTS Foundation (scroll down to the bottom to treatments for POTS)
Hey @Shroomie7 first off welcome to the community and thanks for reaching out about what's been going on for you. Managing and coping with chronic illness can so tough, and there can be so many elements to it. It can be really isolating and a grieving process of trying to navigate what things will look like for us. Am I correct in hearing that this diagnosis is still relatively new for you?
I'm really glad you're reaching out for support as sometimes connecting with others who are going through similar struggles can help feel more connected and hopeful about the future. I wanted to share these articles we have on chronic illness in case this is helpful, as well as a service called Livewire, where you can connect with other young people living with illness or disability.
I'm wondering if you have anyone in your life supporting you through this? I'm also curious about what kinds of things you normally like doing or are interested in. Sometimes thinking about new ways we can still do things we enjoy or are interested in within the limitations we have, can be helpful.
We also have a service called PeerChat, where you can talk one on one with a peer worker, which might be helpful.
I just wanted to let you know we'll be sending you an email to check in shortly as well
