#spoonielife — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #spoonielife, aggregated by home.social.
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Living a rock ‘n’ roll life: doing laps of the local green air (300 metres) to check battery length of my electric wheelchair! 😜
Didn’t get a great angle for this photo when I was taking one of many breaks lying on a bench.
#MEcfs #PwME #MyalgicEncephalomyelitis #SpoonieLife #ChronicLife @mecfs
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Living a rock ‘n’ roll life: doing laps of the local green air (300 metres) to check battery length of my electric wheelchair! 😜
Didn’t get a great angle for this photo when I was taking one of many breaks lying on a bench.
#MEcfs #PwME #MyalgicEncephalomyelitis #SpoonieLife #ChronicLife @mecfs
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Living a rock ‘n’ roll life: doing laps of the local green air (300 metres) to check battery length of my electric wheelchair! 😜
Didn’t get a great angle for this photo when I was taking one of many breaks lying on a bench.
#MEcfs #PwME #MyalgicEncephalomyelitis #SpoonieLife #ChronicLife @mecfs
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Living a rock ‘n’ roll life: doing laps of the local green air (300 metres) to check battery length of my electric wheelchair! 😜
Didn’t get a great angle for this photo when I was taking one of many breaks lying on a bench.
#MEcfs #PwME #MyalgicEncephalomyelitis #SpoonieLife #ChronicLife @mecfs
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Polly Patterson - Supporting Clients Through Medical Gaslighting
https://chroniclivingtherapy.com/supporting-clients-through-medical-gaslighting/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness
@mecfs @longcovid #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
Polly Patterson - Supporting Clients Through Medical Gaslighting
https://chroniclivingtherapy.com/supporting-clients-through-medical-gaslighting/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness
@mecfs @longcovid #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
Polly Patterson - Supporting Clients Through Medical Gaslighting
https://chroniclivingtherapy.com/supporting-clients-through-medical-gaslighting/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness
@mecfs @longcovid #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
Polly Patterson - Supporting Clients Through Medical Gaslighting
https://chroniclivingtherapy.com/supporting-clients-through-medical-gaslighting/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness
@mecfs @longcovid #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
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.
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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.
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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.
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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.
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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 consultationAnd 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.
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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 consultationAnd 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.
-
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 consultationAnd 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.
-
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 consultationAnd 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.
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...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...😶🌫️😑
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...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...😶🌫️😑
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...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...😶🌫️😑
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...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...😶🌫️😑
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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. 😅
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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. 😅
-
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. 😅
-
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. 😅
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Well, looks like I might have to postpone breaking them in. Depends on whether the current flare-up will improve (drastically) tomorrow. 😬
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Well, looks like I might have to postpone breaking them in. Depends on whether the current flare-up will improve (drastically) tomorrow. 😬
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Well, looks like I might have to postpone breaking them in. Depends on whether the current flare-up will improve (drastically) tomorrow. 😬
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Well, looks like I might have to postpone breaking them in. Depends on whether the current flare-up will improve (drastically) tomorrow. 😬
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🌩️ 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
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🌩️ 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
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🌩️ 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
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🌩️ 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
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💜 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
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💜 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
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💜 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
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💜 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
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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 -
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 -
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 -
Short blog post: "The Legacy of Florence Nightingale and Chronic Illness"
https://sahanasa.wordpress.com/2026/06/16/the-legacy-of-florence-nightingale-and-chronic-illness/
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 -
Short blog post: "The Legacy of Florence Nightingale and Chronic Illness"
https://sahanasa.wordpress.com/2026/06/16/the-legacy-of-florence-nightingale-and-chronic-illness/
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 -
Short blog post: "The Legacy of Florence Nightingale and Chronic Illness"
https://sahanasa.wordpress.com/2026/06/16/the-legacy-of-florence-nightingale-and-chronic-illness/
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 -
Short blog post: "The Legacy of Florence Nightingale and Chronic Illness"
https://sahanasa.wordpress.com/2026/06/16/the-legacy-of-florence-nightingale-and-chronic-illness/
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 -
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
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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
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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
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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
-
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
-
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
-
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
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Well, the remake has now been added to the ever-growing when/if-I'm-healthy-enough-again backlog. 🙃
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Well, the remake has now been added to the ever-growing when/if-I'm-healthy-enough-again backlog. 🙃
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Well, the remake has now been added to the ever-growing when/if-I'm-healthy-enough-again backlog. 🙃
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Well, the remake has now been added to the ever-growing when/if-I'm-healthy-enough-again backlog. 🙃
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✳️ Besuch von meinem Sohn 🥰
✳️ Mit ihm gemeinsam sein Geburtstagsgeschenk ausgesucht 🤩
✳️ Bei der Gelegenheit auch zwei neue Puzzle für mich mitgenommen. 😅#GuteNacht ✨🌙
🦋
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✳️ Besuch von meinem Sohn 🥰
✳️ Mit ihm gemeinsam sein Geburtstagsgeschenk ausgesucht 🤩
✳️ Bei der Gelegenheit auch zwei neue Puzzle für mich mitgenommen. 😅#GuteNacht ✨🌙
🦋
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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... 🙄
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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... 🙄
-
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... 🙄
-
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... 🙄