Multiple sclerosis is My Living Hell

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All posts tagged Relationships by Multiple sclerosis is My Living Hell
  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    Compassion isn’t a scented candle. It’s the gut-punch you feel when someone else is getting steam rolled by life and the decision to step in anyway. Sympathy + action. Feel it, then do something. Not performative, not “thoughts and prayers,” just… work.

    Here’s the short version for people with brain fog, children, or executives:

    It bonds humans. People trust you more when you show up without the moral spreadsheet.

    It stabilises brains. Kindness lowers stress hormones. Shocking, I know.

    It’s contagious. One good act, three copycats, and suddenly the place doesn’t feel like a bus station at 2 a.m.

    It grows empathy. You get better at reading rooms and souls. Useful for everything from friendships to not starting wars.

    It fixes small things so big things break less. Compassion is social WD-40.

    It grows you. Emotional intelligence isn’t woo; it’s a toolkit.

    Why people dodge compassion (and how to not)

    “It makes me look weak.” Strength isn’t armour; it’s range. You can lift a friend and still lift your own life. “I’ll be used.” Boundaries are part of compassion. “No” is not a betrayal; it’s maintenance. “It’s too much.” Then scale it. Listen for five minutes. Share a link. Sit quietly. Not every fire needs your lungs. “It’s naive.” Spare me. The data’s in: teams with psychological safety outperform gladiator pits. “People will judge me.” People judge sandwiches. Live anyway. “Conflict!” Compassion reduces heat. Understanding ≠ agreement. You can be kind and still disagree like a freight train politely. “What if I’m misunderstood?” You will be. Try clarity, not mind-reading. The point is impact, not applause.

    Humanism: the operating system beneath the kindness

    Humanism says humans matter, evidence matters, and we can build a decent world without needing to bully each other with invisible rulebooks. It plugs straight into compassion:

    Focus on welfare. If people aren’t flourishing, the experiment is failing.

    Use empathy and evidence. Feel the problem, then check the facts before you launch a crusade.

    Fight for justice. Compassion gets teeth when it meets policy.

    Stay secular and inclusive. Everyone in, no purity tests.

    Grow up. Personal growth isn’t a hashtag; it’s fixing your mess and showing up again tomorrow.

    Practical: doing compassion without lighting yourself on fire

    Triage your energy. You’re not an A&E department for the entire internet.

    Default to listening. Half of help is shutting up.

    Give specific help. “I have 20 minutes. Want food, a call, or a link?”

    Set a re-entry time. Compassion sprints, not doom marathons.

    Audit outcomes. Did it help? Keep it. Didn’t? Change tack. Evidence over ego.

    The very dark, very British bit

    We’re meat computers with trauma patches hurtling through space on a damp rock, inventing meaning so Mondays don’t win. Compassion is how we cheat entropy for five minutes at a time. Humanism is the patch notes saying “try not to make it worse.” Both beat the pantomime of pretending you don’t care. You do. Own it. Then weaponise it gently.

    Afternoon AI (relevant, caffeinated, slightly unsettling)

    Your feed runs on optimisation. Algorithms reward outrage because it’s sticky. Practice counter-design: post one compassionate act, daily, with a clear call to action and zero doom bait. Track engagement on useful interactions: comments offering resources, not performative sighs. Train your corner of the machine by feeding it what you want multiplied.

    Micro-metric to try before evening:

    1 real check-in DM,

    1 resource link shared,

    1 boundary you keep. If the dashboard in your skull feels calmer, you’re trending.

    Quick receipts

    Compassion without boundaries is martyrdom.

    Humanism without action is a pub argument.

    Empathy without evidence drifts into saviour cosplay.

    Evidence without empathy becomes bureaucracy. Balance or bust.

    Care on purpose. Use data. Keep your edges. Repeat.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    @goblinbloggeruk - sick@mylivinghell.co.uk

    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
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  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    Beyond the Awkward Truth: Reclaiming Intimacy, Pleasure & Connection

    If you read Part 1, you already know we ripped up the polite pamphlet version of “MS & sex” and talked about the real, awkward truths: sexual dysfunction, libido loss, nerve changes, fatigue, and how multiple sclerosis can affect intimacy on every level primary, secondary, and tertiary.

    Part 2 is your guide forward. We’ll cover practical ways to work around MS-related sexual problems, from cooling hacks and position adaptations to communication tools, pelvic floor therapy, and adaptive-friendly toys. More importantly, this is about hope — proving that intimacy, touch, and pleasure are still very much possible with MS, whether you’re dealing with numbness, spasticity, or just the psychological toll it can take.

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly—not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone—please reach out for help.

    Let’s Drop the Embarrassment MS gate crashes your sex life like a drunk uncle at a wedding: uninvited, loud, and weirdly fixated on your nerves. The pamphlets say, “You may experience changes in sexual function.” Translation: “We’re too squeamish to say your bits and brain don’t always sync.” So we’re saying it. Straight. With humour. With dignity. And without the faux-clinical tap dance.

    What MS Actually Does to Sex (Short Version) Wiring issues: numbness or oversensitivity, delayed orgasm, erectile changes, lubrication changes.

    Body issues: fatigue, spasticity, pain, temperature sensitivity, bladder/bowel drama.

    Brain issues: mood dips, anxiety, body-image wobble, brain fog murdering arousal mid-flow.

    Relationship issues: feeling like a “patient,” awkward silence, mismatched desire.

    None of this means “no sex.” It means different sex—sometimes better, because you stop faking and start designing.

    The Detail (No Euphemisms) Sensation Chaos Numbness: direct touch may feel “off.” Work around the map: thighs, perineum, nipples, scalp, back, lips, ears. Pressure > light tickles.

    Hypersensitivity: use fabric barriers (silk, cotton), hands over lube first, firm pressure instead of fluttery.

    Orgasm & Arousal Takes longer / fizzles: slow build, rhythmic stimulation, patterned breath, edging.

    After-tingle = hellfire: cool packs, fan, slow landing, avoid overheating (MS hates heat).

    Mobility & Spasticity Warm up (literal warm compresses or shower).

    Stretches you’d do before physio—hamstrings, hip flexors, adductors.

    Positioning = everything (see cheat sheet below).

    Bladder/Bowel Anxiety Pre-emptive loo runs, avoid trigger drinks/foods beforehand, keep towels handy, agree a “no shame” pact.

    If urgency’s a beast: short sessions, build trust, try non-penetrative nights.

    Meds & Mood (Plain English) Some meds blunt desire or erection, dry things out, or mess with timing.

    Depression/anxiety = arousal killers. Treat them like medical problems, not moral failures.

    If a drug wrecks sex, ask the prescriber about alternatives or timing tweaks.

    Make It Work (Toolkit) Plan the window: your least-fatigued time. Morning sex is criminally underrated.

    Lower effort, higher payoff: toys, pillows, wedges, chairs, harnesses.

    Temperature control: fan on, room cool, breathable sheets.

    Lube like you mean it: water- or silicone-based—reapply without guilt.

    Communication: use explicit consent language (“Green/Yellow/Red” check-ins) so you can pivot without killing the mood.

    Expand the definition: oral, hands, toys, mutual masturbation, sensual massage, kink-lite with safe words. Penetration is optional, intimacy isn’t.

    Positions That Work (MS-Friendly, Wheelchair-Friendly)

    1) Royal Spoon (Side-Lying)

    Why: minimal effort, easy hip/leg support, great if heat/fatigue spike.

    How: pillows between knees and behind back. Angle hips slightly forward for access.

    2) Throne Room (Seated)

    Why: chair/wheelchair does the stabilising.

    How: giver seated; receiver straddles or sits facing/away. Use armrests, lap belt (optional), cushions behind lower back.

    3) Modified Missionary (Support Stack)

    Why: familiar but doable.

    How: wedge under hips, pillows under knees. Giver on forearms or kneeling. Pace slow; micro-movements beat piston nonsense.

    4) Over-Bed Table / Edge Assist

    Why: takes weight off arms/hips.

    How: receiver bends slightly over padded surface; giver stands/kneels. Great for external stimulation too.

    5) Yab-Yum Lite (Supported Lap)

    Why: connection, eye contact, shallow thrusts.

    How: giver seated against wall/headboard; receiver sits on lap. Pillows behind lumbar; wrap a blanket round hips for stability.

    6) Starfish Massage (No-Goal Night)

    Why: zero performance pressure, rediscover erogenous map.

    How: oil/lotion massage, breath sync, optional toys. If arousal arrives—great. If not—also great.

    Symptom → Try This (Quick Map) Fatigue: morning window, side-lying/seated, short “sets” with breaks, breathable room.

    Spasticity: warm shower, gentle stretches, fixed positions with props, slower rhythm.

    Numbness: pressure-based touch, wider body map, vibrators with steady patterns.

    Hypersensitivity: fabric barrier, firm—not flicky—touch; pause if burning/zinging starts.

    Bladder urgency: bathroom first, towels down, agree it’s okay if accidents happen.

    Erection issues: longer runway, ring (if safe), pump (if advised), PDE5 meds discussion with GP/neuro.

    Dryness: quality lube, longer warmup, avoid foaming soaps pre-sex.

    Scripts for Real Humans

    Starting the convo: “I love you and I miss us. MS changed what my body can do. Can we experiment and design sex that suits both of us now?”

    In the moment: “Yellow—hip cramp. Stay where you are, just slower pressure.”

    After a wobble: “That was frustrating. You didn’t do anything wrong. Let’s try the chair setup next time and keep the fan on.”

    This is lived reality + practical tactics. Not medical advice. If a med or symptom is wrecking your sex life, that’s a clinical problem—take it to the Doctor without shame.

    Resources Pelvic floor physiotherapy – Ask your GP or neurologist for a referral; can improve bladder control, orgasm strength, and pelvic stability.

    Sex therapy / psychosexual services – Available via NHS in some areas; ask your GP for a referral or search for accredited private practitioners.

    Disability-inclusive sex shops – Look for suppliers that offer accessible toy designs, discreet packaging, and a no-hassle returns policy.

    Community groups for MS + sexuality – Peer support means practical tips from people living it; search MS Society forums, Facebook groups, or local meet-ups.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

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