I’ve been fortunate enough to recover from #mecfs. I am sharing my story and a detailed path of how I did it. I hope it helps some of you.
I asked my GP for a referral into adult ME services because they were being no help in managing my health. I had to argue to get them to send a referral, but eventually they did. I received a letter today saying that because of the pandemic they have cancelled my referral. Has any one else experienced this?
I know in the great big scheme of this it isn’t that important and people are having it a lot worse at the moment, but I’m annoyed, it feels that yet again, they are diminishing how bad my CFS is currently. The GP has directed me to action for ME’s website, which although very useful, is not quite the same as getting a dr. I don’t even know what to do now. Any help would be appreciated.
I am disabled, and I need help. I need someone to drive me to the doctor and help me keep track of medical instructions. I need someone to help with shopping, cooking and housework. I need someone who can help my kids with remote learning. I need someone who will keep track of paying my bills and ensuring my finances are in check. I need someone to do fun things with my partner and make sure his needs are met physically. I need these things not because I am lazy, privileged, apathetic, burnt out, overwhelmed, depressed, etc. I need these things because I AM SICK and physically can't do them without collapsing.
I can keep myself in a good headspace most days. Some days I falter, though, and I become a ball of overwhelming resentment and anger. All the people who surrounded me when I was able to function have disappeared. Family, friends, coworkers - everyone just vanished. I think they're just "waiting it out" as though I'm going to get well again miraculously and they'll be able to rejoin my life and pick up where they left off without having to acknowledge the ickiness of me being unwell.
The public seems to think that there are these great doctors, laws, and social systems in place to help people like me. Here's a big newsflash: there aren't. There are illusions of such things - and if you have help from a disability attorney, social worker, or other tenacious advocate you may be lucky enough to jump through all the necessary hoops to qualify - but a wonderful world of easy access to decent medical care, transportation, financial assistance, empathy, etc. does not exist for the disabled in the U.S.
So, I'm having a pity party moment. The list of things I need help with in my first paragraph gets longer every day, and help is not coming. My son is failing reading. Some nights we eat cereal for dinner. The house is messy. Our cupboards contain nothing but snack foods and things you can easily heat up. I am internally SCREAMING because these are all things that need attention, but my body literally does not have the energy to handle basic tasks...and the kids and my partner can only do so much.
I'm not angry about being disabled - it's no one's fault. It's not the result of some terrible accident or medical malpractice. It's not something I brought on myself with an unhealthy diet or lack of exercise. I have no one and nothing to blame for this. I was functioning at a million miles a minute, got sick, and that was that.
I just wish society, friends and family would acknowledge that I am the same person I was before and I still deserve to EXIST despite the fact that I am no longer as productive as I once was. Instead, I live in a bubble neatly hidden away from the sensitive eyes of the rest of the world who don't want to be faced with the fact that they, too, can get sick without warning. I am surrounded by ostriches.
#Anxiety #MightyMoment #mightyfriends #MightyBookClub #TheMightyTakeaway #TheMighty #MightyQuestions #MightyQuotes #Upallnight #PolycysticOvarySyndrome #HashimotosThyroiditis #MyalgicEncephalomyelitis #cfsmeawareness #PinchedNerve #GastroesophagealRefluxDisease #Exercise #DBT #Dbtskills #CBT #BipolarDepression #DepressiveDisorders #Depression #Hugs #Friends #DatingWithAChronicIllness #ChronicIllness #ADHD #BorderlineStigma #MakeMeLaugh #Humor #Art #Photography #hobbies #diet #Healthyeating #HugsNeeded #MightyFeatures #Selfcare #Poetry #god #Church #HorsebackRiding #animalscience #Farming #rollerskating #Activism #Faith #AspergersSyndrome #Aspie who wants a hug and will give me support?
Anyone else, go to bed or get up and says to themselves, I'm going to do this in the morning because u feel good, but then as soon as I've, dressed, put a wash in, walked the dogs, fed them, made a cuppa and had breakfast.... Need ur bed again! 🤪.
The only thing that gets me out of bed is me saying come on the boys need walkies, that first welcome off them especially my staffie his butt in the air wiggling and his head on the floor 🤣 is a lovely good morning and my old man dog of 17yrs sticking his head in my legs with a little wag of his tail just makes me feel like uve got this shit girl. I love walking them. Yes some days I can't and it is all day in bed.
But after their walk I just got no motivation to do sweet f all. And I've put so much weight on, I don't eat much, as I struggle to get a meal down me. So it's small meals or snacks. I want to do the keto meal plan, downloaded books and bought books but it's getting my head around to starting it. I don't know what or how to make it work. #Fibromyalgia #BrainFog #MyalgicEncephalomyelitis #cfsmeawareness #Motivation
No fever just wheeze and congested chest but I have asthma and vocal cord dysfunction due to one of my exes and it’s hard being alone with no way to be tested for covid bc I’m disabled and don’t drive the cab driver would not wait in cvs covid line and was a jerk charging me for every min we were waiting in a meter and wouldn’t turn it off and I had barely any money with me so I had to get out of cab and go into cvs and be without a test hard and scary. There was an outbreak of covid at the hospital er where I was last week scared I got it.check on me please and offer support?? #CheckInWithMe #PTSD #ChronicIllness #CPTSD #CPTSDinrelationships #Anxiety #lonely #Bipolar2Disorder #BorderlinePersonalityDisorder #BorderlineStigma #MyalgicEncephalomyelitis #cfsmeawareness #BipolarDepression #BipolarDisorder #Art #Photography #Bipolar1Disorder #Exercise #COVID19 #HowToDealWithDepression #Fibromyaliga #GeneralizedAnxietyDisorder
I’ve been suffering severely from chronic fatigue syndrome for 4 years now, bedbound at first but its slowly gone to moderate, on my flare ups im bed bound again though, however my doctors have all failed me and i cant find anything to try and help ease my pain or even make a difference to my chronic fatigue. Are there any recommendations? #MyalgicEncephalomyelitis #ChronicFatigueSyndromeampME #cfsmeawareness #ChronicIllness
I have started a youtube channel! It's to spread awareness about our reality. Next video will cover my experience with covid 19. Please enjoy :) youtu.be/KQD__rABmMU
#ChronicIllness #Fibromyalgia #ChronicPain #ChronicFatigueSyndrome #cfsmeawareness #dailylife #Youtube
So, I'm pretty much tired of anyone trying to make chronic pain patients feel like they are wrong, or "less than," for wanting a better quality of life through pain management. I'm also no longer going to be accepting anyone acting like we don't have a right to absolutely DEMAND better treatment, and to demand that the medical industry, and anyone who does not experience the pain, stop acting like they should be making guidelines and policies for us. All laws, rules, regulations, policies, & procedures should have to have a final approval by a panel of chronic pain patients (elected by other chronic pain patients,) who have been vetted and found to be reasonable, educated, and have either had a medical education background, or have been in the industry somehow (long-term patient care, advocacy & awareness, etc.) It's the only way to ensure that we aren't being mistreated by people who have no clue what it means to live this way. I'll be writing much more about this subject in the near future. For more "Dida-isms," more on these subjects, and mental health, relationships, money, and more- visit the link in my bio #spoonielife #cfsmeawareness #InvisibleIllness