A lot of the time I’m super hesitant to let anyone know that I am having a better day.
Most people forget that my illness is chronic. They see me laughing, smiling and genuinely enjoying my day and make the assumption that I’m permanently better. But what they are seeing is just one good day. They don’t see the really terrible days and thus I get nervous that they think I can go out, party, and spend my energy like they do on the daily. Comment below if you can relate to this.
Follow us @how.u.feeling. Our DMs are always open. Come introduce yourself to us and if you ever need to chat or vent we are always avail. You are not alone in your fight ❤️
5,22319416 November, 2019
I see this every single day. I see people targeting my friends and hashtagging their disabilities like endometriosis and auto immune disease. Trying to make money from desperate people with lies.
Suggesting you can cure anyone's disability with kale or smoothies is abhorrent. It's taking advantage of sick people, and if you're reading this and think it applies to your business practices, you should be ashamed. If you're about to defend these people block me before I do it for you. .
If you dig my advocacy or anything I do and want to support me and buy me a coffee/donate there's a link to my ko-fi in my bio linktr.ee!
ID: a tweet of mine which reads Eating healthy will not cure a chronic illness or disability. Kale is not medication. Pyramid scheme smoothies are not medication. Eating healthy is obviously useful, but suggesting it will cure anything is irresponsible, dangerous and disgusting. Stop.
2,16921217 November, 2019
READ⚠️💞👭🗯️ @yayfor.m.e : "☆New Rules☆
✔️ You are allowed to be ill and to dress up
✔️You are allowed to be ill and not be able to change out of your PJ's
✔️You are allowed to use a mobility aid/wheelchair one hour, and then not use it the next.
✔️You are allowed to be that fussy one when ordering food out
✔️You are allowed to cancel on people at short notice
✔️You are allowed to get angry and frustrated about your situation
✔️You are allowed to grieve things you miss
✔️You are allowed to park in the disabled bay with a blue badge
✔️You are allowed to try new things and then withdraw because of illness
✔️You are allowed to not shower/bathe in days because it's too difficult
You are allowed to hit the dry shampoo, hard.
✔️You're allowed to ask for help from others for basic things
✔️You are allowed to request a seat on the tube/tram if you need it
✔️You are allowed to be super sick one day and then ok the next
✔️You are allowed to give no explanations when asked why you are sick...
✔️You are also allowed to give many. It's your choice.
These were all my recent thoughts upon being in Paris for a week but spending 70% in bed. When you're trying so hard just to get by you don't need to add to your misery with shame and embarrassment. You don't owe anyone your energy. If anything, be proud of where you are at. It's might not be where you thought you would be but this, atleast for now, is your new reality. Embrace it. I made it away, that in and of itself is a triumph. Give yourselves a break and see how far you've come. You are so allowed to feel great about yourselves, because every day you get up and try all over again. Blinking marvellous 💪"
💖🤝💖 FOLLOW @YAYFOR.M.E ✔️😘💐
💐🤝💐 PSST ... GET OUR GARDEN BLOSSOMING AT WWW.JOINTHESPOONIESISTERHOOD.COM 💐🤝💐
🙌💥💖❣️ @thrivewithibdpodcast : "pack your own food
say no to plans
take the weekend to relax
pop the digestive enzymes
go out without drinking
WHATEVER it is that you need to do for your health - do it confidently and do it with the knowledge that you don’t need to explain yourself to anyone
do you FOR you sis 👏🏻💃🏼 Xx "
1,3243716 November, 2019
When most people think about chronic pain, they only consider the physical toll it can have on one’s body, but the emotional effects are just as debilitating.
Long term pain, with limited to no relief, changes a person and takes control of all aspects of their life. It makes you feel frustrated, sad, depressed, hopeless and lonely. You feel less superior than others. You are so isolated you almost feel like an alien in this world. The worst part is that these emotions can make our physical pain worse and thus the pain cycle never stops.
I have and continue to deal with the emotional side of my illness everyday. There are many days where I feel extremely sad. Depressed about my situation and anxious for my future. What helps me push through the dark moments, is leaning on others. We all need help and support. I encourage everyone to talk to someone (friends, family or a therapist). You don’t need to be alone in your fight. For those of you who feel like you don’t have anyone that understands them, and who don’t want to see a therapist or counselor, this community is here for you. We are here for you. Our DMs are always open. It may take some time to respond but we will. Sending love to you all. Follow us @how.u.feeling.
Comment below with your thoughts.
4,21323314 November, 2019
👋😁💙 @memyselfand_m.e : "Disabled ➡️ Still disabled
People tend to have perceptions of people with a disability and how they think they should look and act in a certain way or even how all people with a disability should be in a wheelchair. I can walk but not without consequences. Wheelchairs aren’t just for people who can’t walk. A wheelchair enables me to do so much more. It gives me support and allows me to leave the house on days I otherwise might not have been able to. Some days I need it, other days I can manage without. People can also very often be disabled and not need a wheelchair at all or any mobility aids either. Disabilities vary so much no two are exactly the same. Always remember that." Follow @memyselfand_m.e 💙💐🤗
3,8638812 November, 2019
Latest Instagram Posts
Do you ever have one of those days where no matter how much you sleep you still feel exhausted? This was a serious question someone asked me fully aware of my permanently exhausted pigeon situation. I was so shocked but all I could respond with was welcome to my life 😂🤷🏻 but for this person it was a one off where as with me it is every single day. They then asked me how I coped with it. I just told them that like the hulk/Bruce Banners secret is that he's always angry, mine was that I'm always tired. I think they just think because I've had the energy to put make up on that I'm magically feeling better, when realistically, I just decided to use my energy on hiding the tiredness rather than do something useful such as make breakfast or do some washing. #fibromyalgia#fibroproblems#exhausted#chronicillness#anxiety
Alguns estudos mostram que o ganho de peso é comum entre indivíduos deprimidos após tratamento crônico com antidepressivos. Embora o ganho de peso possa estar associado à remição da depressão, não se descarta que esses fármacos possam modular o centro da fome, aumentando o apetite.
Os fatores envolvidos no aumento do apetite pelos antidepressivos ainda não estão perfeitamente elucidados. Como a depressão está associada à alteração do comportamento alimentar, alguns autores atribuem o aumento de peso como uma consequência da remissão dos sintomas depressivos pelo tratamento com antidepressivos (Costa. C. A. N, 2011). ➡️Antidepressivos tricíclicos (ADT): (ex: Amitriptilina, Nortriptilina, Imipramina, entre outros). O ganho de peso é, muitas vezes, relatado como resultado da melhora do quadro depressivo pelo uso da droga, levando a mudanças no apetite e não, simplesmente, decorrente de um efeito colateral da medicação. ➡️Antidepressivos inibidores seletivos da recaptação da serotonina (ISRS): (ex: Fluoxetina, Citalopram, Paroxetina, Sertralina, Escitalopram e outros). É apontado que a serotonina tem um papel como regulador do apetite e da escolha de macronutrientes (hidratos de carbono, gorduras, proteínas). Concentrações altas de serotonina levam à redução do apetite e à preferência por alimentos protéicos. Baixos níveis produzem aumento do apetite e preferência por hidratos de carbono. Seu efeito na perda de peso a longo prazo não tenha sido demonstrado. ➡️Antidepressivos de classes diferentes:
Chouinard investigou, em 183 pacientes, o uso da bupropiona (antidepressivo de nova geração-ANG), comparado ao da amitriptilina. Constatou ganho de peso médio de 1,5kg para os que usaram amitriptilina e de 0,5kg para os que usaram a bupropiona. •A análise de 4 ensaios clínicos com 1.466 pacientes, que usavam de 40 a 120mg de duloxetina (ANG), 20mg de paroxetina ou placebo durante 8 a 34 semanas, mostrou que houve variação na média de peso corporal (-0,3kg a +1,3kg). Portanto, nenhuma diferença estatística foi observada entre os grupos tratados com duloxetina ou paroxetina (Peixoto. H. G. E, et al, 2008). #fibromialgiadordiaria#fibromialgia#dorcronica#depressão
Many thanks to a hearing impaired follower for the suggestion.
From now on, all of my live videos will be uploaded to my TrainOuttaPain YouTube channel. They will be automatically transcribed by YouTube. If you find an issue, message me.
Be well 💜
Poke, turn please, flash, repeat.
Jab, turn please, click, repeat. "Are you having pain now?"
"Yes. Always." The real side of chronic pain, illness, & injury?
It is doctor appointment after appointment after appointment after appointment after appointment.
It is worry over how much insurance will cover for the next step in treatment and how much I will be financially burdening my husband and I.....
It is loss of identity because of the inability to work full-time or carry on a "career" anymore.
It is upset about the things that you "used to be able to do" that you can't do anymore. It is jealousy when you see the same girl that runs every Saturday morning jog by your house for the 100th time... something you can't do anymore.
It is having to lean on people. It is having trust in your spouse. It is guilt. It is dependence. It is grace. It is taking this life a bit slower. It is a reminder of the human experience. It is being vulnerable. It is having less judgment and more empathy. It is everything it can be to make me notice all of the gifts I have in life and all the blessings I'm given daily.
And ya know what? Now that I've gotten used to it all.... it really, truly is not that bad.
I've learned to adjust to my limits.... my nerve pain medication is absolutely insane and has TOTALLY & COMPLETELY changed my quality of life.
I like the trust I have to have in my husband... it puts a new perspective in me. One where I don't just rely on myself. One where the control freak in me has to let go and be supportive of the person that is supporting me.
I have to love myself for what I CAN do, not what I can't.... and that is absolutely lovely and totally eye opening.
It is saying "I'm grateful for what I have... I am not being punished, and I do not need to carry anger inside, or pity myself because I'm different than I used to be." It is SO many things.
And it is part of me.
I am not just a career, I am not just my pain, I am ME... and there are so many beautiful parts about that. #ChronicallyGrateful#ChronicPainWarrior#HerniatedDisc#Fibromyalgia#SpoonieLife#Spoonie#Gratitude
I’m proud to be able to go to work while being a full time student and stand for 8 hours while helping kids have fun. Although I end up paying for it with terrible pain the fact that I’m able to do it amazes me.
I would jump on the Karen meme but the Karen I know is lovely and very unlikely to say daft things about chronic illness. Then I realised I probably know nice Sharons too.
I overthink things a lot.
Video: Leo lipsyncing to audio. First scene is a distorted fisheye lense shot of leo saying "right?" with text on screen that says "get well soon". The second shot is no longer distorted, leo mouths "right..." and pulls a wtf face while the image zooms in and question marks pop up around their head, third shot is a longer lipsync, leo looks exasperated, the words are "cos there's a lot of people trying to tell me how to deal with myself but I'm not gonna listen if you mention my health. I don't care, don't tell me and don't text me."
4043 minutes ago
Hello, recently I have been diagnosed with fibromyalgia and trigeminal neuralgia. I’m on carbamazepine for the TN and unfortunately allergic to gabapentine that would help treat both. Is there anyone else with both conditions that can give me survival advice? I’m in constant, extreme pain and totally lost.
Fibro is a neurological condition. It's difficult to treat and rarely gets medication to stop all the symptoms and pain. It also tends to come as an additional condition alongside other autoimmune conditions.
So I was finally diagnosed today after years of pain, extreme fatigue and sleepless nights. Those that also suffer, advice/tips would be much appreciated on how to deal/cope with this illness. Thank you 🖤
Unfortunately I know this feeling all too well. It feels exactly like how my last flare up started. I’ll keep doing what I’m doing, working on self care, patience, and serenity now. Knowing this will pass, hoping it will pass soon.
I'm ecstatic that I finally get to try @aimovig_erenumab.aooe for my chronic migraines. With so many having luck with it, I wanted to try it myself. My pcp was unable to prescribe it until I tried all of the anticonvulsants and antidepressants covered on my insurance. There was a rigorous process of me going on a med, waiting awhile, raised dosage, go on different med and repeat.
The preventative care never worked. My insurance is still pending on approving the care but I was able to use aimovig's access card to fill the prescription while my insurance company approves it.
I'm hopeful it will help reduce my daily migraines 🧠🤞