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  1. Pretty much every day needs to be a rest day for me, but then there are days where I'm effectively awake since 2:30 am, so they transform into 𝗿𝗲𝘀𝘁 𝗱𝗮𝘆𝘀.

    #SpoonieLife #MECFS #Sleep

  2. Pretty much every day needs to be a rest day for me, but then there are days where I'm effectively awake since 2:30 am, so they transform into 𝗿𝗲𝘀𝘁 𝗱𝗮𝘆𝘀.

    #SpoonieLife #MECFS #Sleep

  3. Pretty much every day needs to be a rest day for me, but then there are days where I'm effectively awake since 2:30 am, so they transform into 𝗿𝗲𝘀𝘁 𝗱𝗮𝘆𝘀.

    #SpoonieLife #MECFS #Sleep

  4. Pretty much every day needs to be a rest day for me, but then there are days where I'm effectively awake since 2:30 am, so they transform into 𝗿𝗲𝘀𝘁 𝗱𝗮𝘆𝘀.

    #SpoonieLife #MECFS #Sleep

  5. CW: Medical stuff

    Phew. Quite a stack of medical appointments I got there.

    - August: Blood work, neurologist, GP
    - September: Dentist (check-up) & dermatologist (outpatient surgery)
    - October: Multiple sessions of an experimental treatment (transcranial pulse stimulation)
    - November: Vaccines, blood work, GP consultation

    And I should probably sprinkle in a few therapy sessions as well. 😅

    As of now, the rest of 2026 would be clear afterwards. Lots can happen in three months, though.

    #SpoonieLife

  6. CW: Medical stuff

    Phew. Quite a stack of medical appointments I got there.

    - August: Blood work, neurologist, GP
    - September: Dentist (check-up) & dermatologist (outpatient surgery)
    - October: Multiple sessions of an experimental treatment (transcranial pulse stimulation)
    - November: Vaccines, blood work, GP consultation

    And I should probably sprinkle in a few therapy sessions as well. 😅

    As of now, the rest of 2026 would be clear afterwards. Lots can happen in three months, though.

    #SpoonieLife

  7. CW: Medical stuff

    Phew. Quite a stack of medical appointments I got there.

    - August: Blood work, neurologist, GP
    - September: Dentist (check-up) & dermatologist (outpatient surgery)
    - October: Multiple sessions of an experimental treatment (transcranial pulse stimulation)
    - November: Vaccines, blood work, GP consultation

    And I should probably sprinkle in a few therapy sessions as well. 😅

    As of now, the rest of 2026 would be clear afterwards. Lots can happen in three months, though.

    #SpoonieLife

  8. CW: Medical stuff

    Phew. Quite a stack of medical appointments I got there.

    - August: Blood work, neurologist, GP
    - September: Dentist (check-up) & dermatologist (outpatient surgery)
    - October: Multiple sessions of an experimental treatment (transcranial pulse stimulation)
    - November: Vaccines, blood work, GP consultation

    And I should probably sprinkle in a few therapy sessions as well. 😅

    As of now, the rest of 2026 would be clear afterwards. Lots can happen in three months, though.

    #SpoonieLife

  9. ...und dann kommt etwas aus heiterem Himmel und reißt mir den Boden weg... 🙄

    Heute erfahren, dass die fachärztliche Praxis, an die ich endlich andocken konnte, bis auf weiteres geschlossen ist.
    Mit zwei ausstehenden Gutachten, die ich dringend brauche.

    Löffel für heute sind weg...😶‍🌫️😑

    #LebenMitAutismus #Autismus #SpoonieLife

  10. ...und dann kommt etwas aus heiterem Himmel und reißt mir den Boden weg... 🙄

    Heute erfahren, dass die fachärztliche Praxis, an die ich endlich andocken konnte, bis auf weiteres geschlossen ist.
    Mit zwei ausstehenden Gutachten, die ich dringend brauche.

    Löffel für heute sind weg...😶‍🌫️😑

    #LebenMitAutismus #Autismus #SpoonieLife

  11. ...und dann kommt etwas aus heiterem Himmel und reißt mir den Boden weg... 🙄

    Heute erfahren, dass die fachärztliche Praxis, an die ich endlich andocken konnte, bis auf weiteres geschlossen ist.
    Mit zwei ausstehenden Gutachten, die ich dringend brauche.

    Löffel für heute sind weg...😶‍🌫️😑

    #LebenMitAutismus #Autismus #SpoonieLife

  12. ...und dann kommt etwas aus heiterem Himmel und reißt mir den Boden weg... 🙄

    Heute erfahren, dass die fachärztliche Praxis, an die ich endlich andocken konnte, bis auf weiteres geschlossen ist.
    Mit zwei ausstehenden Gutachten, die ich dringend brauche.

    Löffel für heute sind weg...😶‍🌫️😑

    #LebenMitAutismus #Autismus #SpoonieLife

  13. Yeah, needed to reschedule.

    It's surprisingly refreshing to be on the phone with someone who doesn't moan about the additional work but cooperatively talks about what's possible. Should be the norm, but it stands out. 😅

    #SpoonieLife

  14. Yeah, needed to reschedule.

    It's surprisingly refreshing to be on the phone with someone who doesn't moan about the additional work but cooperatively talks about what's possible. Should be the norm, but it stands out. 😅

    #SpoonieLife

  15. Yeah, needed to reschedule.

    It's surprisingly refreshing to be on the phone with someone who doesn't moan about the additional work but cooperatively talks about what's possible. Should be the norm, but it stands out. 😅

    #SpoonieLife

  16. Yeah, needed to reschedule.

    It's surprisingly refreshing to be on the phone with someone who doesn't moan about the additional work but cooperatively talks about what's possible. Should be the norm, but it stands out. 😅

    #SpoonieLife

  17. Well, looks like I might have to postpone breaking them in. Depends on whether the current flare-up will improve (drastically) tomorrow. 😬

    #MECFS #SpoonieLife

  18. Well, looks like I might have to postpone breaking them in. Depends on whether the current flare-up will improve (drastically) tomorrow. 😬

    #MECFS #SpoonieLife

  19. Well, looks like I might have to postpone breaking them in. Depends on whether the current flare-up will improve (drastically) tomorrow. 😬

    #MECFS #SpoonieLife

  20. Well, looks like I might have to postpone breaking them in. Depends on whether the current flare-up will improve (drastically) tomorrow. 😬

    #MECFS #SpoonieLife

  21. 🌩️ Flare Report: Pain

    Pain isn’t always visible.

    It can burn, ache, throb, stab, or feel like your entire body weighs a thousand pounds. Just because others can’t see it doesn’t mean it isn’t real.

    💜 If you’re hurting today, remember: You don’t have to earn your rest. Pain is reason enough.

    ❓What’s ONE thing you wish healthy people understood about chronic pain?

    #ChronicPain #ChronicIllness #Spoonie #InvisibleIllness #FlareReport #PainAwareness #Disability #spoonielife

  22. 🌩️ Flare Report: Pain

    Pain isn’t always visible.

    It can burn, ache, throb, stab, or feel like your entire body weighs a thousand pounds. Just because others can’t see it doesn’t mean it isn’t real.

    💜 If you’re hurting today, remember: You don’t have to earn your rest. Pain is reason enough.

    ❓What’s ONE thing you wish healthy people understood about chronic pain?

    #ChronicPain #ChronicIllness #Spoonie #InvisibleIllness #FlareReport #PainAwareness #Disability #spoonielife

  23. 🌩️ Flare Report: Pain

    Pain isn’t always visible.

    It can burn, ache, throb, stab, or feel like your entire body weighs a thousand pounds. Just because others can’t see it doesn’t mean it isn’t real.

    💜 If you’re hurting today, remember: You don’t have to earn your rest. Pain is reason enough.

    ❓What’s ONE thing you wish healthy people understood about chronic pain?

    #ChronicPain #ChronicIllness #Spoonie #InvisibleIllness #FlareReport #PainAwareness #Disability #spoonielife

  24. 🌩️ Flare Report: Pain

    Pain isn’t always visible.

    It can burn, ache, throb, stab, or feel like your entire body weighs a thousand pounds. Just because others can’t see it doesn’t mean it isn’t real.

    💜 If you’re hurting today, remember: You don’t have to earn your rest. Pain is reason enough.

    ❓What’s ONE thing you wish healthy people understood about chronic pain?

    #ChronicPain #ChronicIllness #Spoonie #InvisibleIllness #FlareReport #PainAwareness #Disability #spoonielife

  25. 💜 What do you miss most about your life before chronic illness?

    Sometimes it’s not the big things.

    It’s running errands without exhaustion.

    Taking a shower without needing a recovery day.

    Making plans without wondering if your body will cooperate.

    Being spontaneous.

    Feeling like yourself.

    Living with chronic illness means grieving parts of life that healthy people rarely think about.

    💜 What do you miss most?

    #ChronicIllness #ChronicPain #SpoonieLife #InvisibleIllness #disability

  26. 💜 What do you miss most about your life before chronic illness?

    Sometimes it’s not the big things.

    It’s running errands without exhaustion.

    Taking a shower without needing a recovery day.

    Making plans without wondering if your body will cooperate.

    Being spontaneous.

    Feeling like yourself.

    Living with chronic illness means grieving parts of life that healthy people rarely think about.

    💜 What do you miss most?

    #ChronicIllness #ChronicPain #SpoonieLife #InvisibleIllness #disability

  27. 💜 What do you miss most about your life before chronic illness?

    Sometimes it’s not the big things.

    It’s running errands without exhaustion.

    Taking a shower without needing a recovery day.

    Making plans without wondering if your body will cooperate.

    Being spontaneous.

    Feeling like yourself.

    Living with chronic illness means grieving parts of life that healthy people rarely think about.

    💜 What do you miss most?

    #ChronicIllness #ChronicPain #SpoonieLife #InvisibleIllness #disability

  28. 💜 What do you miss most about your life before chronic illness?

    Sometimes it’s not the big things.

    It’s running errands without exhaustion.

    Taking a shower without needing a recovery day.

    Making plans without wondering if your body will cooperate.

    Being spontaneous.

    Feeling like yourself.

    Living with chronic illness means grieving parts of life that healthy people rarely think about.

    💜 What do you miss most?

    #ChronicIllness #ChronicPain #SpoonieLife #InvisibleIllness #disability

  29. Medication check from Medi 💊

    Medi says: take your medications.

    No shame if you forgot. No guilt if you need reminders. Chronic illness routines can be exhausting, and reminders help.

    Your health matters.
    Go take them if you need to.

    Daily Reminder | Livin’ In A Flare

    #Medi
    #TinyAndFriends
    #MedicationReminder
    #ChronicIllness
    #Spoonie
    #SpoonieLife
    #InvisibleIllness
    #Disability
    #SelfCareReminder
    #LivinInAFlare

  30. Medication check from Medi 💊

    Medi says: take your medications.

    No shame if you forgot. No guilt if you need reminders. Chronic illness routines can be exhausting, and reminders help.

    Your health matters.
    Go take them if you need to.

    Daily Reminder | Livin’ In A Flare

    #Medi
    #TinyAndFriends
    #MedicationReminder
    #ChronicIllness
    #Spoonie
    #SpoonieLife
    #InvisibleIllness
    #Disability
    #SelfCareReminder
    #LivinInAFlare

  31. Medication check from Medi 💊

    Medi says: take your medications.

    No shame if you forgot. No guilt if you need reminders. Chronic illness routines can be exhausting, and reminders help.

    Your health matters.
    Go take them if you need to.

    Daily Reminder | Livin’ In A Flare

    #Medi
    #TinyAndFriends
    #MedicationReminder
    #ChronicIllness
    #Spoonie
    #SpoonieLife
    #InvisibleIllness
    #Disability
    #SelfCareReminder
    #LivinInAFlare

  32. Short blog post: "The Legacy of Florence Nightingale and Chronic Illness"

    sahanasa.wordpress.com/2026/06

    Headings:
    -The Crash After the Front Lines
    -Aggressive Pacing in the 19th Century
    -Her Story Gives Us Strength

    #MEcfs #PwME #ME #MyalgicE
    @mecfs #chronicillness #chroniclife #Spoonielife

  33. Short blog post: "The Legacy of Florence Nightingale and Chronic Illness"

    sahanasa.wordpress.com/2026/06

    Headings:
    -The Crash After the Front Lines
    -Aggressive Pacing in the 19th Century
    -Her Story Gives Us Strength

    #MEcfs #PwME #ME #MyalgicE
    @mecfs #chronicillness #chroniclife #Spoonielife

  34. Short blog post: "The Legacy of Florence Nightingale and Chronic Illness"

    sahanasa.wordpress.com/2026/06

    Headings:
    -The Crash After the Front Lines
    -Aggressive Pacing in the 19th Century
    -Her Story Gives Us Strength

    #MEcfs #PwME #ME #MyalgicE
    @mecfs #chronicillness #chroniclife #Spoonielife

  35. Short blog post: "The Legacy of Florence Nightingale and Chronic Illness"

    sahanasa.wordpress.com/2026/06

    Headings:
    -The Crash After the Front Lines
    -Aggressive Pacing in the 19th Century
    -Her Story Gives Us Strength

    #MEcfs #PwME #ME #MyalgicE
    @mecfs #chronicillness #chroniclife #Spoonielife

  36. What’s something healthy people take for granted that you think about every day?

    For me, it’s the tiny everyday things that aren’t tiny anymore.

    Showering.
    Leaving the house.
    Standing in line.
    Making plans.
    Doing one “normal” thing without calculating the recovery cost.

    Chronic illness changes the way you move through the world.

    What’s one thing you wish people understood?

    #ChronicIllness #ChronicPain #SpoonieLife #InvisibleIllness #DisabledLife #ChronicIllnessAwareness #Pacing

  37. What’s something healthy people take for granted that you think about every day?

    For me, it’s the tiny everyday things that aren’t tiny anymore.

    Showering.
    Leaving the house.
    Standing in line.
    Making plans.
    Doing one “normal” thing without calculating the recovery cost.

    Chronic illness changes the way you move through the world.

    What’s one thing you wish people understood?

    #ChronicIllness #ChronicPain #SpoonieLife #InvisibleIllness #DisabledLife #ChronicIllnessAwareness #Pacing

  38. What’s something healthy people take for granted that you think about every day?

    For me, it’s the tiny everyday things that aren’t tiny anymore.

    Showering.
    Leaving the house.
    Standing in line.
    Making plans.
    Doing one “normal” thing without calculating the recovery cost.

    Chronic illness changes the way you move through the world.

    What’s one thing you wish people understood?

    #ChronicIllness #ChronicPain #SpoonieLife #InvisibleIllness #DisabledLife #ChronicIllnessAwareness #Pacing

  39. Showing up after chronic illness doesn’t always look productive.

    Sometimes it looks like resting.

    Sometimes it looks like asking for help.

    Sometimes it looks like simply making it through the day.

    And every version counts.

    If you’re having a hard flare day today, this is your reminder:

    ❤️ Rest counts.
    ❤️ Healing counts.
    ❤️ Surviving counts.

    What does showing up look like for you today?

    #ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #Disability #ChronicIllnessAwareness #SpoonieLife

  40. Showing up after chronic illness doesn’t always look productive.

    Sometimes it looks like resting.

    Sometimes it looks like asking for help.

    Sometimes it looks like simply making it through the day.

    And every version counts.

    If you’re having a hard flare day today, this is your reminder:

    ❤️ Rest counts.
    ❤️ Healing counts.
    ❤️ Surviving counts.

    What does showing up look like for you today?

    #ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #Disability #ChronicIllnessAwareness #SpoonieLife

  41. Showing up after chronic illness doesn’t always look productive.

    Sometimes it looks like resting.

    Sometimes it looks like asking for help.

    Sometimes it looks like simply making it through the day.

    And every version counts.

    If you’re having a hard flare day today, this is your reminder:

    ❤️ Rest counts.
    ❤️ Healing counts.
    ❤️ Surviving counts.

    What does showing up look like for you today?

    #ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #Disability #ChronicIllnessAwareness #SpoonieLife

  42. Showing up after chronic illness doesn’t always look productive.

    Sometimes it looks like resting.

    Sometimes it looks like asking for help.

    Sometimes it looks like simply making it through the day.

    And every version counts.

    If you’re having a hard flare day today, this is your reminder:

    ❤️ Rest counts.
    ❤️ Healing counts.
    ❤️ Surviving counts.

    What does showing up look like for you today?

    #ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #Disability #ChronicIllnessAwareness #SpoonieLife

  43. Well, the remake has now been added to the ever-growing when/if-I'm-healthy-enough-again backlog. 🙃

    #ChronicIllness #SpoonieLife

  44. Well, the remake has now been added to the ever-growing when/if-I'm-healthy-enough-again backlog. 🙃

    #ChronicIllness #SpoonieLife

  45. Well, the remake has now been added to the ever-growing when/if-I'm-healthy-enough-again backlog. 🙃

    #ChronicIllness #SpoonieLife

  46. Well, the remake has now been added to the ever-growing when/if-I'm-healthy-enough-again backlog. 🙃

    #ChronicIllness #SpoonieLife

  47. #DreiGuteDingeDesTages

    ✳️ Besuch von meinem Sohn 🥰
    ✳️ Mit ihm gemeinsam sein Geburtstagsgeschenk ausgesucht 🤩
    ✳️ Bei der Gelegenheit auch zwei neue Puzzle für mich mitgenommen. 😅

    #GuteNacht ✨🌙

    🦋

    #LebenMitAutismus #LebenMitHochbegabung #SpoonieLife

  48. #DreiGuteDingeDesTages

    ✳️ Besuch von meinem Sohn 🥰
    ✳️ Mit ihm gemeinsam sein Geburtstagsgeschenk ausgesucht 🤩
    ✳️ Bei der Gelegenheit auch zwei neue Puzzle für mich mitgenommen. 😅

    #GuteNacht ✨🌙

    🦋

    #LebenMitAutismus #LebenMitHochbegabung #SpoonieLife

  49. Es ist endlich warm draußen...☀️

    Der Vorteil:
    ich kann endlich die Balkontür offen lassen.

    Der Nachteil:
    in der benachbarten Sporthalle wird bei offenen Türen gefeiert... ich werde gerade akustisch in alten Schlagern ertränkt...
    Carpendale, Petry, Kaiser usw....

    Ich hab die Wahl zwischen zu warm oder zu laut...

    ...ich geh mal meine Loops holen... 🙄

    #Autismus #LebenMitAutismus #SpoonieLife

  50. Es ist endlich warm draußen...☀️

    Der Vorteil:
    ich kann endlich die Balkontür offen lassen.

    Der Nachteil:
    in der benachbarten Sporthalle wird bei offenen Türen gefeiert... ich werde gerade akustisch in alten Schlagern ertränkt...
    Carpendale, Petry, Kaiser usw....

    Ich hab die Wahl zwischen zu warm oder zu laut...

    ...ich geh mal meine Loops holen... 🙄

    #Autismus #LebenMitAutismus #SpoonieLife

  51. Es ist endlich warm draußen...☀️

    Der Vorteil:
    ich kann endlich die Balkontür offen lassen.

    Der Nachteil:
    in der benachbarten Sporthalle wird bei offenen Türen gefeiert... ich werde gerade akustisch in alten Schlagern ertränkt...
    Carpendale, Petry, Kaiser usw....

    Ich hab die Wahl zwischen zu warm oder zu laut...

    ...ich geh mal meine Loops holen... 🙄

    #Autismus #LebenMitAutismus #SpoonieLife

  52. Es ist endlich warm draußen...☀️

    Der Vorteil:
    ich kann endlich die Balkontür offen lassen.

    Der Nachteil:
    in der benachbarten Sporthalle wird bei offenen Türen gefeiert... ich werde gerade akustisch in alten Schlagern ertränkt...
    Carpendale, Petry, Kaiser usw....

    Ich hab die Wahl zwischen zu warm oder zu laut...

    ...ich geh mal meine Loops holen... 🙄

    #Autismus #LebenMitAutismus #SpoonieLife

  53. #NachtGedanken

    Was ist das mit den Menschen und der Verantwortung?

    Warum fällt es den meisten Menschen so schwer, verantwortlich zu handeln?

    Warum sind so wenige bereit, die Verantwortung für ihr Tun, für ihre Entscheidungen, zu tragen?

    Wie anders wäre die Welt wohl, wenn alle es täten...

    #Verantwortung #Autismus #LebenMitAutismus #LebenMitHochbegabung #SpoonieLife #AlienOnAStrangePlanet

  54. #NachtGedanken

    Was ist das mit den Menschen und der Verantwortung?

    Warum fällt es den meisten Menschen so schwer, verantwortlich zu handeln?

    Warum sind so wenige bereit, die Verantwortung für ihr Tun, für ihre Entscheidungen, zu tragen?

    Wie anders wäre die Welt wohl, wenn alle es täten...

    #Verantwortung #Autismus #LebenMitAutismus #LebenMitHochbegabung #SpoonieLife #AlienOnAStrangePlanet

  55. #NachtGedanken

    Was ist das mit den Menschen und der Verantwortung?

    Warum fällt es den meisten Menschen so schwer, verantwortlich zu handeln?

    Warum sind so wenige bereit, die Verantwortung für ihr Tun, für ihre Entscheidungen, zu tragen?

    Wie anders wäre die Welt wohl, wenn alle es täten...

    #Verantwortung #Autismus #LebenMitAutismus #LebenMitHochbegabung #SpoonieLife #AlienOnAStrangePlanet

  56. #NachtGedanken

    Was ist das mit den Menschen und der Verantwortung?

    Warum fällt es den meisten Menschen so schwer, verantwortlich zu handeln?

    Warum sind so wenige bereit, die Verantwortung für ihr Tun, für ihre Entscheidungen, zu tragen?

    Wie anders wäre die Welt wohl, wenn alle es täten...

    #Verantwortung #Autismus #LebenMitAutismus #LebenMitHochbegabung #SpoonieLife #AlienOnAStrangePlanet