M.E.

Join the Conversation on
M.E.
1.9K people
0 stories
210 posts
  • Explore Our Newsletters
  • What's New in M.E.
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    Missing 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 #jointhypermobilitysydrome

    13 reactions 8 comments
    Post

    Feeling sorry for myself. #Depression #Anxiety #ChronicIlless #ChronicPain #Fibro #ME

    Hi fólks! So here is the deal: About two weeks ago I had my annual flu shot and got a slight fever ( I sometimes do ), a week later I got my fourth Covid-19 shot. Two days later I got fever 37,5°C which for me equals 38°C because my normal tempture is 36,5°C. Yeasterday, Saturday, I had no tempture, but today, Sunday, it's UP AGAIN! 😡😣😣 I am feeling a bit frustred, had some plans, had to cancel for THE SECOND TIME THIS WEEK!!! ☹️☹️☹️ In my case this is a mixture of the shots, my reaction to them and the daman flu. Don't get me wrong, I'm not badly ill, just tired of staying home.

    14 reactions 7 comments
    Post
    See full photo

    central sensitization syndrome

    Sometimes a new approach is needed and sometimes IT makes sense!

    youtu.be/vJNhdnSK3WQ

    m.youtube.com/watch

    We hope this helps someone out there we just learned about this while you tubing through #ME #CFS #Fibromyalgia #ChronicFatigue #ChronicPain

    #CroudSourceIT

    2 reactions
    Post

    Competitive Sport

    By no means am I blaming football for my mental health problems. I have fond memories of playing sport and being part of a team/organisation. I was gifted with the ball and excelled on the pitch.

    It was my father who ruined my experience. It was not enough for my father to simply appreciate that his son was capable of running, jumping and kicking a ball. He brought along a competitive spirit that was not only embarrassing but toxic.

    I was skillful but I was not a naturally gifted athlete with any attributes that made me excel far beyond my years. I was playing in the year above and starting in the team but again this was not enough for my father who expected me to excel in the squad. I lacked in stature and athletic ability (speed mostly) and this would eventually lead to difficulties towards the end of my playing days.

    If I ever get around to having kids, I will think long and hard before enrolling them in to a competitive sport / environment. The problem with competitive sport is it breeds a mindset based on results. The schooling system is also guilty of this. I would like this post to focus on the issue of sports although I also experienced major issues at school.

    There is an argument for competitive sport but my overall consensus is it did me more harm than good. The need to be the best always critiquing how I played, never being satisfied and the game forever playing on my mind. For something that gave me very little it is very taxing on the psyche.

    My team disbanded and I was forced to join a new team in a more difficult league for which I was not prepared. The game was no longer fun and became serious business with everyone trying to make it to the senior squad where money was involved.

    It was a combination of life getting in the way of my dream of becoming a footballer and my own poor life choices. It takes a very strong willed individual to ignore the lights, girls & music and focus solely on the game. You need to be wiling to sacrifice for the sport. When I gave up on football, I started to experience identity issues as I felt the game made me who I was.

    My dad only wanted the best for me, so when I started to act out and started to steal it was a shock to him and he didn't know how to handle my behaviour.

    It wasn't until I stopped playing football and realised that the game had left me feeling empty and took a lot away from me. It also left me with a competitive streak that I sought to satisfy elsewhere. I felt deep sadness that my own stupid decisions had ruined my dream of becoming a footballer.

    In my later years I have trouble agreeing to be part of a team, group or association. Football is not the sole reason for this but adds to my mental problems associated with gang mentality. It also brings out an us against them mentality which I don't want anything to do with. Keeping to myself has brought on its own challenges and I fight with negative emotions most of the time as I come to terms with who I am.

    #self #Myself #Individual #Fear #solely #Responsible #scared #groups #people #Smoking #Drugs #Addiction #Drinking #gangs #ME #Sport #cutthroat #toxicmasculinity #goingout #lights #Music #Addiction #Depression #isolated #nobody #bymyself #Girls #Identity #competition #NotGoodEnough #best #First #winning #Success #failure #defeat #bottom #Fights #Life #Death #alone

    5 reactions 1 comment
    Post

    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

    Post
    See full photo

    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

    11 comments
    Post

    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

    Post

    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

    themighty.com/2018/03/friends-leaving-sick

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

    2 reactions 23 comments
    Post
    See full photo

    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