I relate a lot to your situation. As a relatively young person, I get exhausted immediately and it takes me a really long time to recover. Most people don't get that because I see to look okay. But the issue is that invisible disability is oftentimes not seen as debilitating even if it is.
Absolutely! I keep declining invites out to see and hang with my friends. They don’t understand why.
If I work five days in a row, I need those nights and the weekend just to get my energy up enough to do it again. I have no energy to go hang out. It’s not fun for me, it’s exhausting.
I experience the same thing: I need time to rest, be alone, sleep a lot. I want to hang out with my friends more, but I can't. It's really sad, but I have to adapt to such living.
Sam, sometimes to be quite honest I strongly dislike having to be around humans. 'What's wrong with you? - you look perfectly fine to me', was what I got during my mid 20s and 30s when a mix of my blend of autism, body dysphoria, anxiety and depression made it impossible to for me to hold down a job for any length of time. Later on when I somehow managed to make peace with myself well enough to study to become a social worker it was ME/CFS that struck me down and finally forced me to take early retirement. My doctor telling me that the job I loved was killing me made for a fairly convincing arguement to make me stop. As for pain Sam, due to ME/CFS I was living with what medical folk call 'Non specific pain', - which means that they don't know what's causing it, but they've got a name for it which makes them feel better about it. And once again I got the 'You look fine to me' comments when people discovered I was on an invalid's benefit. And I got so much daft well meaning advice on how I could cure myself that I didn't want. When type 1 narcolepsy which had been hiding away behind my ME/CFS symptoms finally broke out in full force I got even more unwanted daft advice, gifts of useless 'cure yourself' books and occasionally called 'lazy' by members of my own family I have small regard for. At least now that I'm firmly in OAP territory I get left alone because people expect old folk to be a bit creaky around the edges. My heart goes out to you Sam, and I can only hope that your situation will improve.
Ugh, gods. The wellness 'self-help' bullshit cures are the worst.
I have to deal with an anti-vaxer moron at work who pops in now and again and once tried to convince me that my genetic thyroid condition could be cured by taking iodine sold by a particular influencer he followed.
Keeps pushing supplements, rolling his eyes when I tell him I stick with my doctor's advice and not bullshit off of Facebook, so on so forth.
I'm just waiting for him to push some bullshit onto a patient so I can snap at him without incurring the boss' wrath.
For a while there I had to make it known that anyone visiting me would not be welcome if they tried to talk about 'cures' or 'therapies' or something else they'd heard about on social media.
"Getting home at the end of my shift, I struggle to make it up the stairs. I’m sure everyone in the house can hear my grunts of pain as I haul my way up, step by agonizing step.
My feet feel like someone is stabbing the soles and heel with a knife. The muscles in my calves and the tendons have tightened up, my back pulls, and my knees… my knees don’t want to bend.
Every time I put weight on a foot to lever myself up, the joints of my knees scream."
I read this and thought, " Wow, this is exactly how I feel. I am about 30 years older than you, so most people would not be surprised that I have arthritis. Most likely, it happened because of wear and tear and injury. I am looking into getting a cane. In the future, I am looking into a knee replacement for the right.
I relate a lot to your situation. As a relatively young person, I get exhausted immediately and it takes me a really long time to recover. Most people don't get that because I see to look okay. But the issue is that invisible disability is oftentimes not seen as debilitating even if it is.
Absolutely! I keep declining invites out to see and hang with my friends. They don’t understand why.
If I work five days in a row, I need those nights and the weekend just to get my energy up enough to do it again. I have no energy to go hang out. It’s not fun for me, it’s exhausting.
I experience the same thing: I need time to rest, be alone, sleep a lot. I want to hang out with my friends more, but I can't. It's really sad, but I have to adapt to such living.
Sam, sometimes to be quite honest I strongly dislike having to be around humans. 'What's wrong with you? - you look perfectly fine to me', was what I got during my mid 20s and 30s when a mix of my blend of autism, body dysphoria, anxiety and depression made it impossible to for me to hold down a job for any length of time. Later on when I somehow managed to make peace with myself well enough to study to become a social worker it was ME/CFS that struck me down and finally forced me to take early retirement. My doctor telling me that the job I loved was killing me made for a fairly convincing arguement to make me stop. As for pain Sam, due to ME/CFS I was living with what medical folk call 'Non specific pain', - which means that they don't know what's causing it, but they've got a name for it which makes them feel better about it. And once again I got the 'You look fine to me' comments when people discovered I was on an invalid's benefit. And I got so much daft well meaning advice on how I could cure myself that I didn't want. When type 1 narcolepsy which had been hiding away behind my ME/CFS symptoms finally broke out in full force I got even more unwanted daft advice, gifts of useless 'cure yourself' books and occasionally called 'lazy' by members of my own family I have small regard for. At least now that I'm firmly in OAP territory I get left alone because people expect old folk to be a bit creaky around the edges. My heart goes out to you Sam, and I can only hope that your situation will improve.
Ugh, gods. The wellness 'self-help' bullshit cures are the worst.
I have to deal with an anti-vaxer moron at work who pops in now and again and once tried to convince me that my genetic thyroid condition could be cured by taking iodine sold by a particular influencer he followed.
Keeps pushing supplements, rolling his eyes when I tell him I stick with my doctor's advice and not bullshit off of Facebook, so on so forth.
I'm just waiting for him to push some bullshit onto a patient so I can snap at him without incurring the boss' wrath.
For a while there I had to make it known that anyone visiting me would not be welcome if they tried to talk about 'cures' or 'therapies' or something else they'd heard about on social media.
"Getting home at the end of my shift, I struggle to make it up the stairs. I’m sure everyone in the house can hear my grunts of pain as I haul my way up, step by agonizing step.
My feet feel like someone is stabbing the soles and heel with a knife. The muscles in my calves and the tendons have tightened up, my back pulls, and my knees… my knees don’t want to bend.
Every time I put weight on a foot to lever myself up, the joints of my knees scream."
I read this and thought, " Wow, this is exactly how I feel. I am about 30 years older than you, so most people would not be surprised that I have arthritis. Most likely, it happened because of wear and tear and injury. I am looking into getting a cane. In the future, I am looking into a knee replacement for the right.