Chronic Fatigue

Hi. I have POTS and am currently in the process of getting a diagnosis for either hEDS or HSD (criteria’s changing), and chronic fatigue, likely ME/CFS or fibromyalgia. I currently use forearm crutches for out of the house and have for a few months. But I’m staring to consider using a manual wheelchair. For long days out, my mum has previously used a transit chair to push me about. I had an experience one time using a manual wheelchair and it was so liberating. This was around the time I got my crutches, they were being delivered. I want to be able to go out for longer, and while I find my crutches help me extend how long I can go out for, I want to be able to go out for even longer and I want more independence. I find it can be hard to be independent on crutches because your hands are occupied and you have no other way to carry things, even bags are very hard to carry, so I have to stick with my mum at the shops and need her help getting things. Using crutches can be a bit hard some days too, one my back and shoulders, especially with a bag, or I just don’t feel well or I feel unsteady. They help, but I could use more help for worse days. I also have severe stomach pain, which I still have no idea what it’s about, and it is far more manageable when sat verses standing. Right now, I don’t leave the house much, even though I really want to. The crutches help, but I still find there’s times I want to leave the house and I know I’m still just going to be exhausted and in pain with the crutches. I’m a young person living at home. I want to know if anyone has any positive stories of using a wheelchair with the conditions I have or similar conditions?

I’ve have had the symptoms of chronic fatigue for years and was just recently diagnosed. I teach middle school and it’s killing me. It drains every bit of my energy but teaching is my passion and I never want to give it up. But what I do need is something better than 400 cups of coffee to keep my energy up. Any over the counter suggestions that have worked for you? I get advertised tons of them but I don’t trust their “miracle cure” I’d love some feed back on what some of you might take to help with the fatigue and mental cloudiness. Coming straight home from work and getting bed isn’t helping with the relationships with my husband. He is so kind and excepting of my limitations but I want to spend more time with him and my other family. I want a work life balance but right now it’s all work and then collapse as soon as I get home. Please any suggestion might help. #ChronicFatigue #ChronicEpsteinBarrVirus #Fibromyalgia #ChronicFatigueSyndrome #ChronicPain #CheckInWithMe

It’s a specific kind of hell to live with Pathological Demand Avoidance, when you want to be productive.

When you have PDA, anything your brain sees as a demand triggers a survival mechanism, you go for fight, flight or freeze mode. The brain wants you to avoid that demand at any costs, and demands can be as simple as getting out of bed, switching tasks or even doing something you absolutely love… yet as soon as it becomes a demand, it gives a major anxiety attack, it feels like you can’t breathe properly, you freeze and it interrupts the entire flow of your day. For me, even if going to sleep feels like a demand, I get anxiety from trying to sleep, and take more time to fall asleep.

I’ve stopped studying things I really enjoy because my parents kept pushing on their topics and made me see them as a demand. I never watch or read recommendations from people if they keep asking me. And nothing of that is being difficult, spoiled or a brat.

It’s a kind of feeling that people whom don’t have PDA usually can’t understand. It gives a kind of sense of dread to push through, and it makes the daily life be really hard and often unproductive.

As I’m trying to build better and healthier habits, I know part of that means pushing through something until it becomes a habit, so it becomes automatic, and that’s really hard as tasks become demands. I often try using self care apps that remember me of what I have to do, in a non aggressive way, that allows me to not freeze, but I’d argue PDA is very debilitating.

And when I consider my case… having multiple disabilities and comorbidities related to the disabilities, make everything harder! Despite the hashtags I added, it’s not only AuDHD; I’m also legally blind and physically disabled. I don’t require a wheelchair, even if it would be very acommodating sometimes, but I live in a lot of chronic pain absolutely everywhere in my body, and have very loose ligaments, so it’s easy to get hurt, and my interoception is messed up, and that makes me not know I’m hurt sometimes. So not only do I have to adapt demands to something that doesn’t trigger my brain, but also I need days when my pain isn’t so bad.

Yesterday was a great day in the pain sense, it was still present but mild, so I got to organise a lot around my house. It felt so good, and helped me on not getting so tired. But that doesn’t last long, I woke up in a lot of pain today, so if I had to do physical tasks today, it would be an immense amount of suffering… and why would that be related to living with PDA, you might ask. But that has a lot to do with PDA, as bad pain days make it that my body and brain trigger survival mechanisms even more often, and it’s even harder to basically function.

I wanted to talk about it since it’s on my mind at the moment, and also to put it out there, because I’m sure many people with PDA might be judged as spoiled or bratty for not acting and completing tasks. Know that you are seen, even if that’s only a stranger on the internet, you’re not spoiled, you’re not a brat, you just need that the habits and tasks you have, don’t become demands, so you can keep doing them naturally.

Does anyone have any tips on what to use to help with chronic pain in public? My symptoms have just started to get worse, and it’s making it hard to walk and do the sports I love, I’ve been wearing a knee brace for support but they aren’t the most reliable. I have been looking at a wheelchair because I think crutches would hurt my arms too much, any ideas? ❤️🥹

Hi, my name is Nipe. I'm here because I have Chronic Fatigue, POTS, Immune issues, and severe depression. I'm isolated because of my health. I can't keep up with the things I need to do and the loneliness is unbearable. I am in deep despair. My 2 dogs are about all that keeps me living in this hell. I am on antidepressants and have a therapist.my partner is not helpful and is self absorbed.

#MightyTogether #Depression #BorderlinePersonalityDisorder #Migraine #PTSD #OCD #Grief

I had an awful painful migraine yesterday that lasted into the night. I’m exhausted and extremely sore today. My head, shoulders and neck feel like I have bruises everywhere.

There’s so much I want to do; I’m so tired of being let down by my own body. I’ve definitely become increasingly isolated (which is actually okay but not at the same time) and less enthusiastic about the future. But, that has a lot to do with the state of the world, right now, too. That’s depressing enough in and of itself.

Nothing feels like it used to - and I’m beginning to think it never will again. I know we move forward - I’m not waxing nostalgic - I’m just missing that spark of hope and happiness that went along with wondering what the future holds. I’m scared that I don’t feel happy about life anymore, overall. And, this scares me even more because I know where it leads and I’m not sure I want to hold onto this existence any longer. Just putting it out there. This is the only place I can express what I’m feeling - with my Mighty tribe. Peace🙏💛

#SuicidalThoughts #Depression #PTSD #Anxiety #Migraine #Osteoporosis #ChronicFatigue #ChronicPain #ADHD