#mecfswarrior

[journeyofdiversity]

“Every life has death and every light has shadow. Be content to stand in the light and let the shadow fall where it will.” ~ Mary Stewart ~ 🥀🥀🥀 #rosesofinstagram #oceanlover🌊 #lightandshadowphotography #zitateundsprueche #mecfswarrior #inspirationoftheday✨ #nichtgenesen #longstoryshort #unsichtbarkrank #bewusstgesund https://www.instagram.com/p/ChpBNwxjWEi/?igshid=NGJjMDIxMWI=

#rosesofinstagram #oceanlover🌊 #lightandshadowphotography #zitateundsprueche #mecfswarrior #inspirationoftheday✨ #nichtgenesen #longstoryshort #unsichtbarkrank #bewusstgesund

[diaperalex]

☀️Summer 2023 is coming soon! Try this: let yourself float safely in a life jacket, releasing all stress, breathe, and watch the sky. Simple, and great tool to beat anxiety. 👍

#beatanxiety #autismawareness #mecfswarrior #mecfs #lifejacket #lifejackets #lifejacketswag #giletdesauvetage #flytväst #chalecosalvavidas #vestedeflottaison #floatinglifejacket #abdlcommunity

#beat anxiety #cool life jacket #hydrotherapy #floating therapy #autism #flytväst #chaleco salvavidas #gilet de sauvetage #veste de flottaison #redningsvest #schwimmweste #autismo

[daisyapples]

I relate to baby yoda because I also fall asleep after doing one thing.

#star wars #the mandalorian #mando dad #mando #mecfs #mecfswarrior #baby yoda

[aliceinfurbyland]

Hello fellow Furby fans! I’ve been a fan since they first came out in 1998! I got a cutie for Christmas and have loved them ever since! This is an old pic of my collection from two years ago, it’s grown since then (need to group them together again soon)!

A little about me: I’m 31, but collect lots of childhood faves, mainly Pokemon but Furby is a big passion of mine currently. I am chronically ill with ME, and have had a relapse recently which has stopped me doing most things in life. I love clothes and colourful outfits, I post on my Instagram @lunglock frequently so please check it out! Two years ago I got a tattoo of my first ever Furby (I’ll take an updated pic soon) and it’s one of my fave tattoos!

I’m here to connect with fellow Furby fans, learn how to skin so I can clean/fix them up! And just have fun as my health makes it hard to do that currently.

Hello to anyone who’s read this *waves*

#furby blog #Furby #Furby 1998 #introducing myself #mecfswarrior #mecfs #furby collecting #furby love #furby baby #chronic illness

[myalgicencephalomyelitiscfstom]

From Sten Helmfrid https://twitter.com/StenHelmfrid/status/1288550921685864450

#myalgicencephalomyelitis #chronicfatiguesyndrome #mecfswarrior #mecfs #cfswarrior

[spooniemumoftwo]

Parenting through Lockdown and Covid-19 with ME CFS

Parenting is the best, and most rewarding thing I've ever done, and yet at times, its equally the hardest job in the world. Adding ME CFS into the mix complicates things further at times, but we work through it, and become stronger as a family unit. However, also adding a global pandemic into the mix...now, that is a different story!

What a year 2020 has been!

The last nearly twelve months have been full of confusion, anxiety and a different everyday living for most people. Imagine all that change, emotional and physical stress, and required resilience on top of a pre-existing chronic illness. 

Up until nine months ago, things were fairly normal, or as normal as they have been since my ME CFS diagnosis. My ME symptoms were being managed and I was maintaining a slower but relatively steady pace of life. As many others, I was worried about the possibility of catching the Covid-19 virus, and the potential impact of that on myself, my family and obviously my current health. There was the added concern that many others shared, about lockdown, working from home and home schooling! What a minefield!

One of my children has ADHD and anxiety, and had already demonstrated that she was worried about what was happening. The day schools closed was rough! We all cried that day, a lot! Whilst dealing with my own anxieties about the short term plans, myself and my husband found ourselves managing our children’s anxieties as well. Trying to reassure them that they WOULD be going back to school, that working from home COULD be fun, and that things WOULD go back to normal at some point, whilst not knowing or believing when, or even if, this would all happen. 

We started our new routine on the Monday. Home schooling with an attempt at a timetable to meet everyone’s needs, and working from home for 30 hours a week around home schooling. I’m not sure there were enough hours in the day or the week but we managed it, just! The main focus had to be helping our children regulate their emotions; allowing them time to be confused, time to be sad, and time to grieve for their ‘normal’ that had been turned upside down. In my role as Mum, I unintentionally neglected to consider and allow time for me to regulate my own emotions.

Then, at the start of April, I had a positive Covid test!

I was extremely lucky; I had extremely mild symptoms and remained reasonably well other than severe flu-like symptoms. As I know many others are experiencing, the after effects however, have been long lasting to say the least.

Since I tested positive for Covid, my energy levels have reduced significantly. There have been days when I simply do not have the energy to sit up for long at all. I've worked in bed, fully propped up by cushions; I've slept in the day and worked in the evenings when I've felt better, and there have been days where I have been able to work at my desk at home.

I've also found my mobility has decreased since I had Covid, and that I now stumble and lose my footing frequently. My daughter celebrated her birthday in the summer, and like most other children who had birthdays during the lockdowns, was insistent that she wanted to see her friends. To comply with the current guidelines and restrictions at the time, and in order to give her a brief 'escape' from the stress of lockdown restrictions, we arranged a walk in a local forest and arranged for a small number of her friends to be there also with their families so she could say 'hello' from a distance. During this walk, a mere 1 mile at most, I stumbled a significant number of times, and my husband noticed. He was visibly spooked and didn't leave my side for the remainder of the walk. I think this was the point where he became aware of the additional difficulties I was experiencing. My husband approaches life in a very matter of fact and optimistic manner, and often lives by a 'worry about things when they happen' mentality, however, having witnessed my apparent difficulties, his understanding of my ME CFS changed that day! From then on, we have worked together to monitor my difficulties, and to seek support for my ongoing concerning mobility.

During this year, our children have needed variety as well as things to look forward to, more so during lockdowns and times when there have been restrictions on who we could see. Not seeing our family has been a huge disappointment for us, as I'm sure it has for many, and we've tried to come up with new ways to facilitate this contact. Walks with a scarf to maintain 2 metre distances, zoom calls for bingo games and Uno, drive by's to briefly see people in the flesh whilst delivering something, and sending letters and cards. It's been hard! Watching my children struggle with these restrictions has been heart -wrenching. We've had to be resourceful! There have been days when the last thing I've felt able to do is be resourceful or creative; there have been days when I've had to put plans in place days previously, and there have been days where I've had to cancel plans made just to prioritise some rest and recuperation for myself.

My priority throughout this last year, as always, has been my children, and we've made so many lovely memories we will treasure forever. We have been so lucky to have time together that we wouldn't have had if schools hadn't closed. Despite the many positives, it has been the hardest thing I've ever done, and it has been so hard knowing that some days, I just couldn't do the things I felt I needed to do to make them happy.

When reflecting on this last year, a global pandemic has taught me many things:

That my children don't need to do exciting things to be happy, they need time with their family.

That being kind to myself and allowing myself time to rest is essential to allow me to be the Mum I want to be

That my children need rest also, and that we don't have to be out and about at all times

That family and friends are everything. The support we've had from family and friends continues to be the most valuable thing ever. Just to know someone is there for us and cares is huge.

That fresh air with my husband and my children is a therapy in it's own place. Being able to leave the house is a luxury we take for granted and often don't make use of enough, until that freedom is taken away. Two weeks isolation was hard...the same four walls all day every day.

I am a hugger - I always knew I was a tactile person, but it's only since that freedom has been temporarily (I hope!) taken away that I realise how important a hug is for me. Giving hugs is one thing, and I love that I can embrace my children and my husband when they need or want it, as well as when I want or need a hug. However, there are times when I need to be hugged, to be told things are okay and to be reassured.

Parenting through a pandemic was never something I envisaged, however it was something we've had to adapt to quickly. I think everyone, not just parents, have felt out of their depths at times during the last year, and yet, here we are at the start of 2021, a new year, ready to embrace what this year has in store.

#myalgic encephalomyelitis #me #mecfs #mecfswarrior #cfsme #cfs/me #cfswarrior #mewarrior #chronic fаtiguе ѕуndrоmе #chronic illness #spooniemumoftwo #spoonie #countingspoons #spoon theory #me/cfs #parenting with ME CFS #CFS Mum #ME Mum #coronavirus #covid19 #lockdown2020 #lockdown #pandemic #global pandemic #parenting through a pandemic #parenting through covid-19

[nyank00]

#MillionsMissing Animal Crossing edition:

Even in Animal Crossing, we lay out shoes for the people missing from their lives. Even in AC, we support @MEActNet in their fight to end stigma and neglect. Even in AC, we take a stand--even when we struggle to stand.

#millionsmissing #mecfswarrior #meaction #psa #acnh

[lisacatherwood]

Me and M.E.

Fatigue as a word doesn’t begin to describe the horror that they casually call Chronic Fatigue Syndrome or M.E.

I was 14 in 1979 when I contracted a virus known then as glandular fever. I was seriously less than chuffed… I was an 800 meter runner. I was a member of my town swimming club, doing competitive swimming and planning to do scuba diving training (I desperately wanted to be a Marine Biologist). I played hockey and went on my bike to the athletics club on a Saturday. I had a lot to do, but I had friends who had had the illness, a cousin who had been very ill and had had a long recovery over some weeks, so we knew what to expect, and I wasn’t too worried.

I had a high fever and then a low grade fever and felt really rotten and it simply didn’t go away. It’s such a simple thing to write down but the reality was and is horrific for my family as well as for me.

I was finally diagnosed with M.E. (myalgic encephalomyelitis) when I was 22 years old. In the intervening time I had had nearly two years off school. I got O’ levels, at 16, doing two year’s work in a year but was then so poorly during my 6th form that I largely blew my ‘A’ Levels at 18. I spent some time in the metabolic unit at my local hospital as they tried to work out what was wrong, with no success. It was frightening and disappointing for me, and for my family. I was so exhausted, confused and miserable that I couldn’t even fill in the university applications never mind thinking of packing and going.

A pattern developed which has persisted until now. I would start to rebuild my life out of the illness and then catch a bug or even just overdo it a little and be destroyed by it. The illness seems to be something to do with a defunct immune system. Some bugs, colds, flus etc. I catch and get over the same as other people, some I catch and it’s like my immunity fails. I can’t get rid of the bug and the symptoms persist for months and months. In my body it feels like the immunity starts to triumph in one part of the system, but is overwhelmed in others. Like chasing dry rot round an old house. The painful joints start to feel better and then it flares in my digestive system and I have nausea and other digestive symptoms. Or the headaches die away and I feel so physically weak, I can’t stand steadily, lift a kettle, turn a tap on, hold a pen. Not just tired, but sore and stiff and lacking control. I have had long periods of being incredibly fatigued cold and hungry. Mind numb, sluggish forgetful, time concertinas, days, weeks pass in weird disjointed forms, sometimes I can barely speak. Summer days spent in low light indoors with two duvets and a hot water bottle, the central heating on, the fire lit, still freezing cold.

The terror of finding you can’t roll over in bed on your own, the humiliation of having to have your personal care taken care of by someone else, the days when all the radios in the world are on in your head, all light is too bright, all sound is too intense, the indignity of being questioned like a criminal in benefits offices and doctors surgeries. I think I can now write openly about all of this because I have nothing left to lose.

I think I had always tried to hide the damage the illness does to my mind because I was afraid of a diagnosis of mental illness. I had an acquaintance who had the same symptoms as me when we were in our twenties, she ended up on a ward in our local mental hospital. They took her drawing materials away from her. They wouldn’t let her write. I fear this kind of thing more than anything.

I have not been idle. I have not been a scrounger. I have a tiny design business. I work as much as I can and now employ two people part time. I am an artist and designer and love my work when I can do it and I do it as much as I can. Just at the moment that isn’t very much. But I live in hope.

I don’t have any children. We sat down and thought about it. It seemed that to bring a child into a house where their mother could spend long periods unable to look after them was a bad thing to do. We made the choice some years ago and given how my health has been subsequently we were right. We made an adult choice and we live with that every day. It doesn’t mean it wasn’t and isn’t painful. I say 'we' but my marriage broke up after 23 years due in no small part to the effect of my illness. When we married I was 25 and the prognosis was that the illness would lessen and in at worst 7 years it would be gone. I'd grow out of it.

I am writing now because I feel awful, my hands ache the tears of weariness and anguish are running down my face. My next major birthday I am 54. I have not learned to scuba dive. I didn’t become a marine biologist. In some ways it would not be over dramatic to say this illness has ruined my life. Certainly it has ruled it, changed it, made it unpredictable, difficult, at times nearly unbearable.

I saw a child on the TV the other night, recently diagnosed with ME/CFS, he is lying there, another little grey shape in a bed (we all go that way) and I saw the desperation in his mother and recognised myself and my mother. The silent scream of horror I had at seeing it all happening again was from the depths of my being.

That the scream was silent is partly because I don’t have the strength to scream and partly because I have no words. It is not just me – the English Language has not got the words.

Reposted now because I’m supporting #meawarenesshour and the attempts to get the #millionsmissing heard. I had a bad flare which put me in hospital in Oct 2018 and I’m still housebound dealing with the consequences.

Originally Written September 2012. 

Updated 2022 - still housebound and ill after the 2018 flare but remaining hopeful. 

#meawarenesshour

#meawarenesshour #millionsmissing #mecfs #mecfswarrior #cfs/me #spoonie #cfsme

[lavishcabbage]

My main disability is MEcfs and I'm fundraising for MEaction, who are researching potential treatments and campaigning for better medical and social care for sufferers. If you want to read more, click the just giving link. https://www.justgiving.com/crowdfunding/amie-marie

#MECFS #mecfswarrior #charity #fundraising #donations #donate #hair #haircut

[ansonmount]

I wonder what it's like to get energy from food.

#Chronic fatigue syndrome #Cfs #Mecfs #Cfsme #mecfswarrior #Chronic illness #Chronic illness problems

[terapiadehilos]

As you may have already guessed if you've been watching my stories, we're on vacation and visiting castles 🏰 and museums (and crêperies) in France. It's something we've been doing for a few years now, and one of the things where I've noticed how much chronic fatigue affects me and those around me: we've cut down on the visits and walks a lot and yet when we get back to where we're staying I am a complete, cranky mess. I can't go up a single flight of stairs without hyperventilating, my brain keeps zoning out after just a few museum rooms, sights I know I'd enjoy are now a chore. It's hard to see this happening, changing so quick, and I've had a hard time adjusting. Thankfully I remembered to pop a ball of yarn and some needles on my suitcase, so when I can feel myself just about to get over the edge I can sit down and knit a row or two, focused on counting and breathing and not on the pain and shame of not being as able and strong as I was before. It's not much but, for now, it is enough. #terapiadehilos #craftastherapy #knittersofinstagram #newbie_knitter #spoonie #spoonieartist #outofspoons #spoonielife #cfsme #mentalhealth #mecfswarrior #spoonieholiday (en Pays de la Loire, France) https://www.instagram.com/p/B0q2b4AASjW/?igshid=usmf7cixllxa

#terapiadehilos #craftastherapy #knittersofinstagram #newbie_knitter #spoonie #spoonieartist #outofspoons #spoonielife #cfsme #mentalhealth #mecfswarrior #spoonieholiday

[ghiblibear]

Wheelchair fundraising

Hi all!

I have recently been diagnosed with myalgic encephalomyelitis (ME) a neuro-immune condition which effects both my cognition and mobility. I am predominantly bedridden and sadly have had to stop working, give up my degree and most of my hobbies.

Whilst I currently have a manual wheelchair, I am unable to propel it myself and rely on others to help me at all times. There is currently no cure or effective treatment for my condition so I can reasonably expect my mobility issues to continue in the near future. There is now very limited funding from the NHS for mobility equipment and grants are becoming so much harder to come by. I therefore made the decision to start crowdfunding for a chair that will help give me the best possible chance at independence.

What I have discovered in researching chairs is that they are expensive - more expensive than even buying a car. After comparing models it seems that the Pride I-go chair is the best fit for my needs, and is at the lower end in terms of cost.

https://glebehealthcare.co.uk/products/pride-i-go-folding-ultra-portable-powerchair

It is light and foldable meaning it can be stored in the boot of a car and would allow me to attend hospital appointments, get some much needed fresh air and even use public transport, all things I can not currently do without help and considerable strain.

I want to thank anyone in advance who contributes and even if you can't, I would appreciate you sharing my page with a few words about what I am fundraising for.

Many thanks and much love 💜

#disabled #disability #spoonie #spoon theory #mecfs #mecfswarrior #mecfsrecovery #pwme #fundraising #fundraiser #wheelchair #mobility aid

[alishawhittam]

ME can’t win , we are so much more than our illness #myagicencephalomyelitis #me #mecfs #mecfswarrior https://www.instagram.com/p/CNZ4NfrMWQR/?igshid=13qjjx8qa2c2l

#myagicencephalomyelitis #me #mecfs #mecfswarrior

[rowenah1974]

A brief update

Having looked at my previous posts, there's a few things I need to update you all on.

1. I was awarded PIP - enhanced rate mobility (full 12 points for getting around) and standard rate care. This meant I could go ahead and order my new Motability car. So now I have a (not as) shiny, new, black Ford C-Max Zetec. Its not hugely different from my old one but I now have cruise control which is fantastic for driving on motorways when my legs get achy!

2. I was awarded a grant for £450 by Margaret's Fund - a charity that helps women with disabilities or long term illnesses. That allowed me to purchase a foldable mobility scooter. This has meant I can go out for longer with the dog and when I go to the supermarket or to an event (concert or convention), I can use my scooter instead of needing someone to push my wheelchair. Yay! And I can take it apart & store it in the boot of the car - I can even charge the battery without having to take the whole scooter indoors. The only thing with Margaret's Fund is that you need your GP or other health professional to apply for you. Full details can be found at www.margaretsfund.org

3. I started going to a local disability social group once a week a few months ago that a friend of a friend set up. We just meet for coffee and a natter really, but it gets us all out of the house. Thanks to one of the ladies in the group, I found out there is currently an extra element of benefit that individuals like myself who do not have an adult carer can get paid extra in lieu of that care. It's called the severe disability premium (or something similar) and its added in with your Employment and Support Allowance. It means more money to pay for transport, grocery deliveries etc. If you are on ESA and don't live with another adult or have a carer claiming carer's allowance for looking after you, its worth contacting the ESA helpline and finding out if you're eligible before the government decides to stop it!

4. My 12 year old son has been diagnosed with Autism Spectrum Disorder. I now have to take him to and from school because he finds the bus too stressful and noisy. It's costing me a fortune in petrol and exhausting me but at least he actually goes in to school. His attendance is way down & I freely admit that sometimes when he begs not to have to go to school, I am too bloody tired to argue with him!

5. I decided to dye my hair a 'normal' colour for my Nan's 90th birthday party on 22nd April. I bought some dark brown, demi-permanent dye and did a skin test which didn't react violently or anything, so I went ahead and dyed my hair. It was fine for 48 hours but by Saturday (I dyed it on the Thursday), my face had begun to swell. By the end of Saturday, I looked like Sloth from The Goonies! I couldn't wear any makeup to my Nan's party on the Sunday cuz the right side of my face was so swollen but I managed to get through it, even with the heat making my scalp itch more. I even managed to make it through watching Ed Byrne's stand up show in Canterbury that evening but by 4am, my scalp was so itchy, I woke my friend and got her to cut all my hair off. The relief was almost instant! So my lovely hair that had grown to halfway down my back is all gone! I now look like a grey haired version of Servalan from Blake's 7 (if you can remember that show)!

Anyway - I think that's about it! Consider yourself updated! I'll try to be better at this blogging lark in future!

#mecfswarrior #chronicillness #chronicpain #chronic fatigue #chronic pain #mecfs #benefits #disability

[myalgicencephalomyelitiscfstom]

The postexertional payback from relatively minor activities in ME/CFS is very frustrating

Some people with other conditions may also be able to relate

#myalgicencephalomyelitis #chronicfatiguesyndrome #cfswarrior #mecfswarrior #livingwithme

[superpooped]

You are cordially invited to my party, in person, or online. Let's celebrate being awesome. http://superpooped.blogspot.com/2018/06/gatsby-for-me-online-vintage-charity.html

#mecfs #pwme #mecfswarrior #me awareness #can you see me now? #spoonie #spoonie life #Gatsby For ME #neuroME