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    the day suddenly turned into a funny beginning

    I came back from the city to spend the weekend at home.
    Today everyone has stuff to do, so I'm alone.
    Coming back from my alone life in the city to be alone again kinda felt a bit disappointing, for a while; at the beginning.

    I was rehearsing my to do list and checking my surrounding, ackowledging the presence of my pets, when I said to myself:
    "Ce, you have spent two years like this, alone at home. Don't you dare telling me you don't know how to engage in self-time".
    Eheh, it suddently has become funny.
    I may be laughing in tiny.

    I.am.alone!

    I'm preparing a 1l kettle of tea, I'm gonna take a shower (when I'll feel ready to, though), fix my hair, I'm gonna try and reply to my penpal's letter, study a bit, take a walk, maybe with my dog, try and take some autumn pictures again, listen to some music and sing along; I have two biscuits and a little bunch of chestnuts to eat and my cats. Plus, I could come up with many more activities, so, yep, I'm finding it funny that for a moment I have been feeling sad at the idea of spending the majority of this day alone.
    Now I can't wait to do all of these stuff while being alone.
    [I'm so used to be alone that this is obviously the reason why I was feeling sad. But between this and stating that I don't know what to do alone there's a huge gap; I wasn't paying attention ^^]

    I'm gonna enjoy myself and any thing I'll have around.

    yAy

    :)

    #alone #Loneliness #Metime #ME #Pets #Hobby #Selfcare #Alonetime

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    Being mostly bedbound in Autumn #MyalgicEncephalomyelitis #ChronicFatigue #ME #Fibromyalgia #AutisticBurnout

    It really sucks being mostly bedbound during my favourite season (fall). Looking forward to this season is what got me through the summer, with its intolerable heat and sun, the constant sweating, all of it. But now I can’t leave my house except for appointments, and I’m too ill in those moments to really enjoy much of anything. I do take photos though, every time I go for an appointment I take photos of all the interesting or beautiful things I see on the drive. I’ve now got lots of pictures of beautiful foliage, and it makes me happy to look at them.

    We do have a view of some nice foliage from our apartment, but I can’t see any of it when I’m in bed (which is most of the time), just rooftops. It’s sad and disappointing , but I’m really trying not to dwell on what I can’t do. Instead I’m focusing on way I can enjoy fall right here.

    I’ve been watching cozy fall movies and spooky shows, drinking apple cider, wearing soft sweaters when my temperature allows it, doing fall and Halloween related lists and things in my bullet journal (I keep my markers and journals by the bed), and looking at images online of cozy fall things.

    It’s not much but so far it’s doing the trick.

    Does anyone have other ideas of how we can enjoy the season from our beds or couches?

    #bedbound #housebound #ChronicIllness #ChronicPain #DistractMe

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    For Chronically Ill Teachers! #ME /CFS #Fibromyalgia #MCS #chronic fatigue syndrome

    Teachers, I was a school counselor and qualified for TRS Disability Retirement. Allow me to share some information about their Health Insurance!
    youtu.be/s63zxzPwx5k

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    Why Do Our Friends Leave Us?

    I'm sharing a previously posted story written on here from 4 years ago.

    My very last 'surviving' friendship is now also drifting away out of my reach 😔. I hate the loneliness it brings.

    Having one friend made everyone else disappearing more bearable. But how am I to feel now I am alone? no more bestie or 'solid' friendship.

    Was it me? Am I too oppressive? Could I have done more?! - I'll never know.

    To clarify, we had a 10 year friendship and we were each others 'best friend' she is my sons godmother. We were literally thick as thieves - could finish each others sentences, say the same things at the same time. She, my husband and I were the '3 amigos'

    So our situation now is that she, and her new husband have moved to another town nearby. She's made new dear friends there,and has slowly weaned off me.

    The last time she saw me it was for my birthday 2 weeks after it 😓 it felt like she was feeling awkward after a while. After she left, I never received the 'I really enjoyed seeing you 🥰' etc text message we would normally exchange - even though I sent one myself

    What finally made me see it for what it is, is that I was meant to see her tomorrow. We planned this ages ago. But was told yesterday she cannot do the afternoon. Morning only. Then today got a message cancelling entirely

    Once before I got sick there was a time where I was all she had, even when everybody left her due to a trauma she experienced, I supported her through.

    I really thought after years of bullying and never fitting in due to Autism, I had found my 'forever friend' ❤️ for years and years our social media pages were constantly full of pictures of our 'adventures' and tagging each others names on posts. Almost announcing to the world what a close unbreakable friendship we had. It made me feel lucky and special🤦‍♀️ somebody liked me for me! I had never had a friendship this genuine before (i thought) I feel embarrassed to have felt this way now.

    I know people who don't stick around due to illness aren't worth my time. Equally I know people can change and drift apart too, but I thought we were stronger than that?

    But it doesn't change the hurt. Especially as this gradually happened over two years, feeling it slip away. Questioning if it was really happening? Surely not?! Then realising the truth, and the painful feelings of being alone, betrayal, of feeling replaced - as if I were a broken toy.

    I feel very sad really. Especially as I am housebound, and cannot make friends offline.

    Has anybody else been left totally alone other than their spouse/partner?
    (im lucky mine is incredible)

    This epitomises how I feel

    Dear Friends: Please Don't Leave Just Because I Have a Chronic Illness

    #friendships  #ChronicIllness  #Loneliness  #Depression  #UCTD #MentalHealth #Anxiety #Autism #ADHD #ASD #AutoimmuneDisease #alone #CheckInWithMe #Sadness #housebound #Longtermillness #hi #Lupus #MixedConnectiveTissueDisease #Fatigue
    #ChronicFatigue #ME

    22 comments
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    Acupuncture, is it helpful? - Please can you share your experiences? 😊

    Has anyone on here tried acupuncture and found relief from any of the following?:

    fatigue, autoimmune illness, joint or muscular pain, long covid, anxiety or depression?

    Would love to hear about peoples experiences, good or bad!

    I cant make my mind up about trying it! I'm scared incase it causes a flare? or is just plain useless as it is expensive!
    Thanks in advance 😊

    #Acupuncture #Healing #alternativetherapy #Pain #UCTD #Anxiety #Autism #Fatigue #ChronicIllness #ChronicPain #Fatigue #ME #Disability #AutoimmuneDisease

    7 comments
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    Beautiful Children

    Does anyone else, who finds it difficult to make memories 'the traditional way' with their children (eg too unwell to run around with, go on holidays or go on days out) find it really upsetting to watch them grow up?
    when you haven't been able to make the same memories as everybody else?

    Or feel like you have been robbed of being a traditional parent, and being able to enjoy their preschool years at home together, because as you were too ill to fully embrace this special time?

    My youngest has just started school properly after reception (kindergarten) and the past 3 years I've not been able to make memories with him in the way that I did with my elder son (12) before i fell ill 3 years ago.

    He was my little man and we did everything together.

    Now I realise 3 years has been lost and wasted to bedbound illness and suddenly my baby is no longer a baby like before, he is almost 6. Though we cuddle and play quietly often, I feel heartbroken and sad ill never be able to 'redo' those special times.

    Can anyone relate? As im struggling to move on from this

    Any advice very much appreciated, love Grace

    #Children #Family #Love #Memories #sad #mummy #ChronicIllness #CFS #ME #UCTD #longcovid #Parents

    8 comments
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    Miss My Active Days

    Seriously missing being super sporty and active. All through childhood, teens and even early 20s I was always the sporty one of my friends. Every day or evening of the week was spent either at the gym, running or doing gymnastics, trampolining, tennis, boxing, netball, hockey or horse riding. Usually more than one session a day.

    I was initially diagnosed with Endometriosis and Adenomyosis at 15 but it didn't really stop me, there was a few days in a month where I particularly struggled. I've had a few back problems diagnosed over the years as well but then it was Fibromyalgia, M.E and Hypermobility (querying EDS) at 17 but I still managed to push through it most of the time - they say it's not usually degenerative although it can be but seriously through my 20s up till now (30), it has definitely got so much worse - mainly the Fibro, M.E and mental health - to the point where I'm no longer part of any sports team or club and often find it difficult just walking around the bungalow. I'm told strength based exercises can be beneficial for Hypermobility but not for Fibro and then stretching can be good for Fibro but not Hypermobility lol Rargh!

    Usually I'm pretty accepting of it and know that I'm doing the best I can but sometimes (like now) I go through periods where I really do miss my old life and the old me.

    I'm sure a lot of you can relate to that feeling.

    I'm mainly writing this for a bit of a moan and letting off steam to be honest but if anyone does read this and can relate - what do you do to help when you're feeling pretty pants about it all? And is there anything you've found that can help you maintain or increase activity levels?

    Any ideas welcome :)

    #ChronicIllness #ChronicPain #chronicfatigue #Fibromyalgia #MyalgicEncephalomyelitis #ME

    2 comments
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    Three Chronic Woes #chronicallyill #ChronicIllness #overwhelmed #Neuroendocrinecancer #ME myalgic encephalitis #EhlersDanlosSyndrome

    How do you cope when it is ALL coming at you at once? I was once a very independent, successful, super type A, corporate America gal who was so capable. Three chronic illnesses later I am exhausted, always battling brain fog, and my past coping mechanisms no longer work. Very quickly my life has spiraled out of control & I am feeling in such utter chaos that I don’t know how to right the ship. #hopeless #needhelp

    13 comments
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    Did food save my life? The right food did. PART 3 #ME #LymeDisease #parasites #PeripheralNeuropathy #mold #EBV #nutrition #paleo

    (continue from part 2)

    It felt such a long way. I had traveled through the ME tunnel and I had come out on the other side. After luckily treating IBS and giving up Western medications I was semi functional and could have a semi life.

    After switching to macrobiotics diet I was even closer to an actual normal health. That normal health (or a close approximation) came to be only after a bioresonance therapist informed me about mercury poisoning and amalgams. I had my 6 (7? I forgot) amalgams safely removed, and after some months I felt NORMAL, for the first time in 7 years.

    I was still happily on a macrobiotic diet, with some adjustment to accommodate my constant meat cravings (macrobiotic diet is mostly vegan, but it does include some meat, even if it's on the Super Extra Yang side of the spectrum).

    My strength was more or less as I remembered it before getting ill (I was never very strong because of all the tranquillisers), the bouts of weakness that were still occasionally returning after my miraculous although partial improvement in 2009 had all but disappeared, Fibro pain was back briefly only after a lot of exercise, once every couple of months. I could do almost every activity I wanted. I felt healed.

    In hindsight that was quite an achievement - only in 2015 I discovered a paper from 2005 that a doctor had misrepresented, demonstrating clearly that I had reactivated Epstein Barr all along. And some months before the onset of what had been diagnosed as ME, I had an insect bite (tick?) showing the fateful bullseye rash, which at the time for lack of better judgement I ignored. All this I learned only many years later.

    So I had managed to send reactivated Epstein Barr and lyme into remission with just diet.

    And juicing. And $80 per week of acupuncture and bio resonance and chiropractor. And 2 years of Chinese herbs. And frigging meditation, 30 to 60 minutes per day. And yoga, And running. And healing all my relationships/ dumping all bad relationships. And changing my sleep patterns. And oil pulling and skin brushing. And 1 month of physio rehab in spa waters every year. OK, maybe it wasn't JUST the diet. Still, as I didn't even know what the real problem was, it was still pretty impressive.

    What I didn't know was that destiny had more s*, pardon me, challenges in store for me. In the form of some delicious sushi. That must had been off and gave me a really bad food poisoning. I didn't think much of that, but after some months the most terrible depression started. I had various reasons to be depressed, my life wasn't going at all i as I wanted it to be, in spite of those two years of good health, but still, I had gone through so many challenges in my life and NEVER felt such bottomless despair.

    July that year was a wonderful summer, and I started crying then, all day, and never stopped. I knew better than running to some psychiatrist to get poisonous medication that would have defeated all my detoxification efforts, also because an impressive number of accidents piled up in the span of few months - a scooter accident that gave me two herniated disks, my career being basically destroyed by some nasty coworkers for no reason, pneumonia, two most important relationships disappearing, I mean, I had good reasons to cry.

    But still, it felt odd, nothing like my usual self. In the same period I developed some intense allergies that I never had before in my life. Allergy to dust. To grass. To some foods.

    Destiny kept turning its wheel, and I moved to another country, in a house with a very weird smell. I had immediate violent reactions, which I thought were due to dust. I cleaned and cleaned, but the reactions got worse. For some strange reason taking a shower was excruciating, the exploding pain in arms and legs would require hours of rest in bed to recede. I tried my usual remedies, juicing, superfoods, strict rice diet, nothing, it only got worse and worse.

    After 6 months I was diagnosed with a shiny new condition, Peripheral Neuropathy, of idiopathic nature ("idiopathic" apparently means : appearing for no reason, in my book it means "diagnosed by an idiot"). Between the pain and the respiratory allergies and the brain fog and the depression that hasn't improved in all that, I was beyond miserable. After a while I changed home again, and I had some respite.

    Finally I had gotten a diagnosis of Lyme and reactivated Epstein Barr and a couple of other beasties to substitute the useless diagnosis of ME and fibromyalgia (I mean, what use is a diagnosis if the only thing they can do for you is tell you to suck it up?!) and finally I had something to work on.

    I started a protocol for Lyme, and in the new city where I had moved I discovered a lovely shop selling fermented food. I never had kombucha before. Or fermented vegetables. Or water kefir. It was a fascinating universe, full of mystery and possibilities. Live bacteria everywhere. Good bacteria winning over the bad bacteria. There was justice in nature. I was excited.

    (trigger warning - we are now at the disgusting part of the story)

    On day 3 of eating fermented food and drinking kombucha, I passed a spoonful of small worms just like my cat used to have (pinworms. they are called). I blinked like 15 times before my brain accepted the reality of what lied at the bottom of the toilet.

    On day 6, I felt something weird, and looked back in the toilet : a 25 cm (almost 10 inches) long string of something that definitely looked like a worm was staring at me (ok it had no eyes so it couldn't stare, but you catch my drift). I could swear I lost consciousness for some seconds. Upon further examination, it was easy to recognise it as a tapeworm (the typical segments and appearance).

    Food had done it again: it made all these parasites come out of hiding. I kept going with food. According to some sources, papaya seeds are given to children in some African countries to get rid of parasites. I took them. I doubled down on the fermented stuff. But then the parasite gave such huge jumps that I realised the problem was much bigger (or actually,

    longer) than I expected.

    There was no specialist to help me. Two gastroenterologists I visited vehemently refused to look a the specimen that i had preserved in a ziplock bag. The holistic doctor I was seeing literally close his eyes and kept them closed until I put away the photos. At the ER a terrified young doctor agreed that it definitely looked like a tapeworm, and, looking very shaken, after a short google search prescribed me one dose of a medicine that was usually prescribed for 7-14 days. Not enough. Stool tests came back negative, but I tended to believe my eyes, and the ziplock bag, more than tests.

    Once again, I had to make do without medical care.

    The Great Parasite War needs its own post, but to cut it short, after various (also pharmaceutical) antiparasitic medications and remedies, I kept the beasts in check thanks to a combination of fermented garlic, pumpkin seeds to paralyse them and Diatomaceous Earth to kill them.

    (One small note; after I passed the whole beast, more than 6 feet without counting the first bit, and I was finally free, the bump I had at the level of my duodenum disappeared, my gallbladder issues disappeared, and the depression vanished overnight. My mental health was back to its original state (which doesn't say much, ok) but I didn't feel that despair anymore. I wish more people knew how parasites can affect a lot of functions in the body. End of note)

    Again I was eating to get healthy. At some point while living in the smelly house, I developed an intolerance to my beloved brown rice. Or all rice. Little did I know that it wasn't much the rice, but the mycotoxins often found in the rice. Or miso. I was so sad to react to miso. I didn't know that Miso is made with one sub-species of Aspergillus. And that a far cousin of his was actually living in my bowels.

    (continue....)