If you carry one thing with you today, let it be this: you are beautiful, you matter, and you are loved.

As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:

“Disability” is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.

Mask up, love one another, and stay alive for one more week.

  • DisabledAceSocialist [comrade/them]@hexbear.netEnglish
    5·
    19 days ago

    They regularly test my T4, T3 and TSH. A few months ago they also tested my blood count and blood sugar, at my request as I was feeling even more tired than usual. They only tested the vitamin deficiencies a long time ago after I fainted in the street and told them I hadn’t been able to keep myself fed. But they never check other hormones. And they are requesting I have these tests less and less frequently, as the doctors who used to work there full time have retired and now it’s just a load of random locums who work there for a day then are gone. And the local hospital is so booked up that my endocrinology appointments aren’t anywhere near as frequent as they should be, and they often just do phone appointments now. The whole NHS seems to be trying to keep patients away as much as possible. If you aren’t actively dying right this second, they aren’t interested.

    • Keld [he/him, any]@hexbear.netEnglish
      4·
      18 days ago

      Yeah the t7-tsh is the standard thyroid panel, but you’re an immunocompromised person with cancer and a restricted diet, you’re the poster child for blood tests. Beat the drums for your own healthcare is all I can say, advocate for yourself. Send emails, call every office, make yourself a huge nuisance, and don’t feel bad for even a second. This is your health and they are utterly failing. These doctors should all be fired if they’re not willing to help you, but sadly I’m not in charge of hiring and firing.

      • DisabledAceSocialist [comrade/them]@hexbear.netEnglish
        5·
        18 days ago

        Thanks. I’ve got a blood test for tomorrow, as far as all the other things I’m just tired. It’s too exhausting dealing with being ill, fighting benefit appeals, fighting for meds and appointments, and constantly having to scrounge and beg repeatedly for food on here. So I can’t mount a huge fight over this but i’ll ask for an appointment. The endo is shut today but I’ll ask for an appointment when they reopen. It’s so hard now though, another problem with the NHS is specialists always try to give phone appointments rather than face to face now. It’s much harder to have a proper discussion like that, and I don’t feel I can say everything I need to say as I’m worried about people like my landlady and her guests overhearing my private medical details.

        • Keld [he/him, any]@hexbear.netEnglish
          2·
          17 days ago

          Part of being a zealous advocate for your own health is being willing to be open about your needs and symptoms. You have nothing to be ashamed of with regards to your health. And you need to be able to say what you need in the context you are in. If you can only communicate by phone you need to be able to say what you need over the phone. It’s not ideal and it may feel humiliating, but it’s the hand we are dealt as patients. Duck into your closet and call when your landlady isn’t home if that’s what you need to do, but do call and do say what you need.

          I know that’s all easier said than done.