👋😁💙 @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 💙💐🤗
3,5607312 November, 2019
Had an appointment with my pain management specialist which went great and I was so excited to report the continued pain coverage with my spinal cord stimulator. The only problem we have been dealing with on the side is that my pharmacy I went to prior was just not communicating with my PMD office for refilling my Baclofen prescription and I have been dealing with a lot of spasm episodes for the past two months which is not great. I had to stop pool therapy as I wouldn’t make it through a session without a cramp, spasm or tremor to start. Met a new doctor who takes place of my main PMD who is out doing surgeries and multiple offices, he is great and all of the staff and other doctors are so receptive to understanding my symptoms and know what to do. I will have a 6 month supply and then won’t have to come in for appointments for a while since it is an antispasmodic which has benefited me GREATLY for over 2 years. It is truly one of the only medications that helps my RSD/CRPS so much. My spasm “episodes” cramp my entire leg and curls my big toe...it’s pretty uncomfortable to deal with but it still gets some pain relief from my SCS. Something I am greatful for but my stimulator does NOT help or stop the spasms which I hoped it would have. BUT medication helps tremendously so I can’t complain much other then when it runs out and my PMD office has to be booked a couple months away from initial calls. I won’t be having to deal with that anymore though. Baclofen is a level 4 controlled substance(means very little instance of abuse) so my old pharmacy had really caused the problem since my doctor today was confused on why they hadn’t communicated anything to them. Many factors played into my change in pharmacies but the main one was miscommunication or no communication at all with my doctors. Again can’t complain anymore since it’s all fixed now though. Happy as a clam and hope to get back to PT ASAP!! #dog#dogsofinstagram#servicedog#workingdog#puppy#cute#happy#poodle#standardpoodle#mylegdoesthesloppyswish#reflexsympatheticdystrophy#crps#rsd#complexregionalpainsyndrome#chronicillness#chronicpain#spine#nerves#spinalcordstimulator#chronicpain#thankful
I’m having a bad neck pain flare up at the moment. I don’t know if it’s linked to being back at worse and back at my desk (less moving about) or stress being back in work, or just a general change in my day to day activities following my week off. Lots of Tiger Balm, heat, and tablets are helping. What do you do to help relieve your neck pain? 📒👓 #chronicpain#neckpain#stress#pain#spoonie
You are seated on the throne and You reign over the heavens and the Earth. Your power is strong enough to move mountains yet gentle enough to comfort us in our fragility. Thank You for being our hiding place, the One who we can run to and hide in.
Today, we are placing our worries, pain, and frustrations at Your feet. In our weaknesses, we are unable to carry these burdens. But we know that Your strength is made perfect in our weakness, so we look to You to continue pushing forward. Because You are our Shepherd, we know that You are able to take care of us and provide us with whatever we need. The issues we face are big, but You are bigger. We cast all of our anxieties on You, because You care for us.
In Your Great Name we pray, Amen.
013 minutes ago
Anyone use the special blue light blocking migraine glasses? Have you found that they help?
By 11am it finally hit 19°! I also walked 3 miles by noon. I got me a whole suit to keep me warm this winter. Mmm I was cozy.
Everyday by noon I usually do 3 miles or more just because my job keeps me that active. This job keeps me moving and gives me extra loving by the dogs I care for. And also doesn't overwork me and I'm outta there by 1. I'm not one to keep up with a workout routine or anything like that. I loose my motivation so easily. But having this job gives me something to push for (money, hey it's a reward) and has understanding which is hard to come by with chronic illness/pain. 💛
Please enjoy some of the doggos I took on walks today 🐾🐕 #endometriosis#thankful#active#cold#winter#mile#chronicpain#chronicillness#job#working#motivation#kenneltech#groomer#dog#dogwalker#doggo
106 minutes ago
Roast chicken (bought already cooked & hot in the co-op for only £3 as it was reduced), with carrot & parsnip mash, roast sprouts, roast potatoes, gluten free stuffing balls & gluten free gravy.
Light and dark together.
My mind has been full of swirling thoughts lately. The comparisons of those fractions of people's lives we see online.
I don't feel like I'm good at living with chronic illness.
I see grace and gentleness and compassion and kindness, all self-targeted, in the community ... I don't feel a part of that.
I'm TERRIBLE at treating myself nicely. I'm, in short, a cranky rage-filled asshole. I'm snarky and sarcastic. I veer toward bullying myself on the daily.
I'm a dichotomy because I'm the opposite in my feelings toward others. I CARE big time. I will do all I can to support and love and spread understanding to anyone...
I don't know how to act otherwise.
Anyone else feel like two different people? Anyone else tried and tried to change and been unsuccessful? Anyone else feel blocked from becoming that enlightened person we see online?? I guess I'm simply a sick lady.
Have you been over to our brand-new, AMAZING, website yet?
We are so super proud of this beautiful site and can’t wait for you to see it!
From photo shoots to new product launches, these past few months have been a whirl-wind of RARE. and we wouldn’t have it any other way.
Each one of us over here at the RARE. headquarters dedicates our energy and time everyday to helping this brand grow, with the intention of continuing to shed light on rare diseases and fight for the people affected by these silent killers.
We are the voice for the voiceless and we take that to heart.
So take a second to jump on over to our new site - www.findyourare.com and let us know what you think in the comments below!
This site was built for you guys and we can’t wait to hear your feedback.
2012 minutes ago
We are located in Texas, and apparently we are skipping the season of fall! The temps here are freezing! Literally! We all have on our fuzzy socks today to stay warm and toasty. Perfect to have post op! Grab one pair, or save some money and get 3!⠀
We are very excited about the lineup of CBD Brands and related businesses that will be educating, answering questions, sampling products and offering special discounts. All attendees get our Signature Pop-Bucks to spend with our sponsors (could easily cover the cost of your ticket). Live music, food, Mocktails, prizes. Like-minded people in a comfortable environment.
Link in bio. Military Veterans get complimentary tickets just for asking.
This year, the FDA approved a CBD-based drug to treat seizures, which was a huge step in making this natural medicine more available to the public and to patients who need it to survive. To date, of all the reported health benefits of CBD oil, this has been the most researched (and proven) use.
I mean, I even say it to people all the time. But I think we forget to explain the distinction between doing your best and leading your body and mind to the point of a breakdown. Doing your best is simply doing things at the best of your ability without damaging yourself. Your best, is not defined by success or failure. Where we make the mistake is we believe that doing our best means that we have to be successful in our attempt. But that’s not true and it’s not an easy idea to come to terms with. Most of us wouldn’t be happy if we “did our best” and failed. In our minds we would always claim that we could have done more. Understanding the limit between pushing forward and pulling backwards it’s not easy. Our lives are full of so much stress and pressure that we tend to push too hard, eventually leading to a complete breakdown. I would never claim this is easy, as I struggle with it myself. But a good rule of thumb for myself is asking “is this sustainable?” and if it’s not, then I know that I am pushing myself too hard. Comment below on your thoughts.
(And yes I know this photo is a bit wacky, but it made me laugh)
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 ❤️
Sometimes being kind is HARD.. There are a lot of people in our lives, including the professionals caring for us, that JUST DON'T GET IT 🤷🏻♀️ It's easy to become irritated the 120th time you explain something to someone 😳.. Situations like this make it easier for us to become isolated and even angry. When this happens, our pain becomes worse, depression and anxiety become worse and we isolate ourselves from people and feelings 😔. It seems I should suggest others be kind to you, and they should!! But, by showing kindness, and maybe a little patience, with others the doors of communication and understanding will swing open 🤗 (Unless your doctor refuses to listen. You can fire them and move on!) 🦓 📣MOST IMPORTANTLY: Be kind to yourself!! This is not an easy life! But, it's your life, SO ROCK IT!! 💞
Its so hard for us endo women for people around us to understand because its an invisible illness but i think sharing other womens stories is important so the people close to you can also see how it effects other women we dont know yet we share the same heartbreak in this illness thank you for letting me share 💛 #Repost@mikaylapavasco
• • • • • •
This is how most endo/pcos warriors live daily. Constant pain. Invisible pain. You get told you’re overreacting. Or that it’s in your head. Or that it’s your lot in life as a woman to have pelvic pain. It’s not! It isn’t normal to be in this much pain every day. It isn’t normal to pass out in the middle of your work day from the enormous amount of pain you’re in. It isn’t normal to feel like you’ve just run a marathon anytime you’re on your feet for more than 10 minutes. We deserve more research and more funding. We shouldn’t have to live like this every day just because others can’t see our illness. We need a cure. We’re sick of being sick. Tired of being tired. #endometriosis#endowarriors#endosisters#endopain#pcos#chronicpain#nocure#endometriosisawareness#pcosawareness#pelvicpain#awareness#womenshealth#endoresearch#overit#thisisreal#notinmyhead#mentalhealth#1in10
With some supervision from @blueleader.thirdfleet I went down the lift, out of our apartment building, next door, then did a small shop and did part of the roll back all by myself, unsupervised. I took a million breaks and it took nearly an hour to pop next door, BUT I did it. I have never done that before ever!!!! I am so ecstatic! I'm proud of myself, hopefully I'm able to do it again, but yeah, first time I've been out without help in nearly 4 years!
The key to releasing bound up fascia is done with a simple, yet profound technique that combines special vibrational frequencies emitted through specialized percussive instruments. This technique is painless and ensures proper mobility of the body’s structure, musculature, organs and fluid flow, which increases circulation, oxygenation, cellular exchange, and decreases pain and inflammation. Contact us today to schedule your free consultation.
Meditation, journaling, hot Epsom salt baths, and essential oils are just a tiny part of hoe i deal with my anxiety and daily pain. Pain alone can make you feel crazy!!! Concentrating on a task while in a immense amount of pain isnt for the weak. Every ounce of your body says to give up and stay in bed, dont move, dont breath. Some days my anxiety takes over andshe is a bitch! Its like have all your insecurities on high while wanting to crawl under a rock at the bottom of the ocean, but with a smile on your face so nobody can tel your freaking out!! Days like this all i can do is focus on breathing in and out...in and out... think about what your greatful for, amazing husband and kids, food, a job, a home, a car,somedays its all you need.. #meditations#breath#greatful#inandout#journaling#anxiety#chronicpain
❤️ SURVIVAL KIT ❤️
Today is #WorldKindnessDay and surviving our bad days involves the use of a survival kit, and kindness is at the heart of it all. Kindness to ourselves, kindness from others, and kindness to others.
However you are feeling today, that mid-week, hump-day, slump-day feeling we can all feel... or maybe it’s a bad week, or a bad month, know that you will be okay and it will get better. Hold on.
For two years when I first got my arthritis I was in limbo-land, wondering what on earth was happening to my joints, wondering whether it would ever get better, wondering if I would feel okay again. I got there eventually, and I’m still getting there now! Without the bad days, we can’t be grateful for the good ones, and both of them make this rainbow tapestry of life.
➡️ MY SURVIVAL KIT
🌈 Talking. Talk it out, talk until you can’t talk anymore, and if the tears start coming - let them. Don’t hold them in.
🌈 Hugs. From your mum, your sibling, your best friend, your colleague, or your pet. Hug it out, and I’m telling you your worries will feel a whole lot smaller.
🌈 Time. Make time for yourself, read a book, take a bath, go for a walk, do something human and come away from your phone.
🌈 Patience. This too shall pass. Just like you’ve survived a flare-pain-crap-day before, you will do it again, but at your own pace.
🌈 Positivity. Try and turn things upside down, so I’ve got a hospital appointment, okay fine, that just means I’ll get myself a treat afterwards!
**💫 Spooky moment 💫** I wrote this at lunchtime, and my colleague interrupted me before I posted it to ask how long it took me to get my diagnosis, then began to cry as she’s really going through something at the moment - and I had no idea - I told her all of the above and gave her a big hug too. You just never know what the even the person next to you is going through! Always be kind.
It's not okay that you have to deal with the uncertainty that a chronic condition brings.
It's not okay that you have to explain your condition to people that do not understand it.
It's not okay that you have to deal with your body’s breakdown at such a young age.
It's not okay that you feel paralysed by fear.
It's not okay that your illness has stopped you from achieving the goals you’d set yourself before your diagnosis.
It's not okay that you're exhausted to the point you can't make it through a single day without curling into a sobbing ball.
It's not okay that you’re not receiving what you need from those around you.
It's not okay that you perhaps are, but feel unworthy of it.
It's not okay that you struggle to ask for what you need.
It's not okay that your condition stops you from feeling fulfilled.
It's not okay that you're swimming in grief for the life you could have without it.
It helps to know that there is a space in which the pain can just be pain without it being covered up by all the things you’re told you should be grateful for instead. I’ve really needed to hear that’s it’s ok to feel all of that without shame, but the mistake I’ve made this past year is that I‘ve been expecting to get this permission from others, not from myself. So here I am today, allowing for all those feelings to just be, in all their pain and glory.
So here it is — whatever it is for you, it's not okay right now, and maybe not tomorrow either. And that, my love, is more than okay. There is no need to cover it up. To smile it away. To starve it away. To fuck it away. To numb it away.
5430 minutes ago
I'm going to brag just a little!! I've really struggled with my commitment to being healthy and feeling better. When you have chronic pain and random flare ups you don't want to even if it makes your overall health better in the long run. It's been so easy lately to give up and make excuses. I'm tired, I'm stressed, I've worked all day. But lately I've committed and started small. But today was huge. 9miles..... 14km. I hurt and will suffer some but it's worth it. Knowing that my mental game is getting stronger hopefully my body will hop on board and feel better too! ☺️ #betterme#betterhealth#rundisney2020#chronicpain#endostrong#endometriosiswontwin#itsallaboutme
1030 minutes ago
Please know that I pose this question with so much compassion and love - because this is the question I’m asking myself today - and I know it stings. I know it’s hard to hear because of the ways we delude ourselves into thinking our over-performing provides us safety. Because it doesn’t, it can’t. Other people aren’t able to give us what we won’t give ourselves. And that’s what I’m sitting with right now.💜
OK Friends... Here it is .... I am often asked (especially this time of year) What I recommend for Arthritis and Chronic Pain .... Well, this is a BEST Seller and one of the Products I use daily. This Product comes in three strengths and the GOLD Label is the strongest! This is a raw concentrate, that much resembles resin. More info on Page 2 - works quickly and is very cost efficient as well ! This Product is on Sale through Sunday 3g - $64.99 (typically a 2-3 month supply). This product can also be used with dabbing pipe/device. Skin issues? Hemp Salve is great for all kinds of issues! Don’t be fooled.... #knowwhatyouaregetting#allcbdisnotcreatedequal . This is one of best salve products I carry. Salve comes in different strengths just like other CBD. Most I see in shops I visit are around 100-250mg. Those are great for dry skin, stretch marks, age spots and before putting on makeup. I have clients who use it for #pain#arthritis#musclepain#cbddab#concentrated#cbdconcentrate#dabs#goldlabel#chronicpain#localizedpain#dryskin and more .... #pmme with questions or to order to #order@obxcbd
5 HABITS THAT INCREASE SYMPTOMS
Girrrrl. I've been watching you, and I know you're so guilty of these😉 stop these habits and watch your symptoms start to fadeeee🥳
I know you're waking up every morning scanning through your body looking for symptoms and that shit needs to stopppp😎 This habit is training your brain to create more symptoms!
If you fear your symptoms it creates resistance within you. Resistance is something that blocks healing altogether. Not only that, but fear will push you deeper into a fight-or-flight survival state, which will push you deeper into illness.
Stop talking about you symptoms! I don't want any talk of illness passing those lips, you hear me?😉 Your words are so incredibly powerful, what you speak, you create. Start speaking of what you DO want, not what you don't.
I know you think exercise is something you need to do to be healthy, but right now your body can't handle it. Exercise is a stress on the body, and the more stress you have the worse your symptoms will become. It's time to take a break, and give your body the rest it needs. Stick with walking and maybe some light yoga.
Next time you get in agreement or upset over something I want you to take notice what happens to your symptoms. Having emotional upsets will flare up your symptoms...and fasssst. Right now is a time where you need to be surrounding yourself with the most positive energy you can to enhance the healing process.
Which of these habits have you been doing? Share with me in the comments!⬇️
3531 hour ago
This is what living with chronic illness and chronic pain looks like🙈
I don’t think I’ve got much to say about this image other than I’d really like to make phone cases one day, so I’m putting that idea out into the world.
As someone who is chronically sick, and predominantly housebound, I use my phone a lot. It’s how I keep up to date with the world, it’s how I keep in contact with friends, it’s how I make new friends when some of the old ones leave.
The conversation around social media and people’s reliance on it so often forgets to mention us.
It can be useful. It can be a lifeline. I’d be incredibly isolated without my phone. I need it.
Sometimes people don’t have the option to go offline.
I know that being online is a privilege but so is being able to be offline.
To go for a walk instead, get some fresh air, do some cooking, engage in physical in-person conversation. That stuff is hard for so many.
We need our time online. It gives us access to information, community and understanding. Some people don’t have that in ‘real life’, through no fault of their own.
It’s world kindness day today, so here’s a little reminder to send someone a text, or a voice note, or an Instagram DM. These forms of communication aren’t fickle or less-than. They matter too, and they can completely change someone’s day.
Wow, I guess I did have something to say after all. All I really wanted to say was phone cases would be cool. Always a teaching moment I suppose!
174162 hours ago
A reminder to celebrate your ‘small’ wins.
This in no way is intended to be dismissive of those that are bedbound. It isn’t your fault if you can’t make it out of bed.
It is a reminder to others that the ability to leave your bed is a big deal. Not everyone gets to do that.
Some people can’t leave their bed, can’t tolerate light coming in the window, can’t tolerate any sort of sound or touch.
I think we’re often told to celebrate the good stuff, but we’re not reminded of what that good stuff actually is.
Wins don’t have to be big to count.
I now don’t take anything for granted, because I know what it’s like to go without.
I know what it’s like to be paralysed from the waist down, so now I fully take in every step.
I know what it’s like to not be able to wash. So now I fully appreciate being clean with fresh hair.
I know what it’s like to not be able to study or work. So now I (metaphorically) jump for joy with every new client.
In a similar vein to my last post, none of this means things are easy. It doesn’t mean there’s not hard times. But I’m recognising the mix.
Privilege doesn’t mean you haven’t suffered or you live your life in a happy daze 24/7
But we should be aware of what we have that others perhaps do not. We should be aware of others struggles that we perhaps have no experience of.
Maybe your big win is buying that house or securing that new client. Maybe your big win is lifting your head off the pillow or someone reminding you they love you.
They’re all valid. Be as dramatic about them as you want.
For everything you manage, assisted or otherwise, I hope you take a second to be proud of it. Everyone’s wins will be different but that doesn’t mean they don’t matter.
Your wins count. I know in times of frustration you might not feel like celebrating them, but they do still count.