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Sassy Saturday ~ Black & White
‘I think we all dislike our bodies even more than “normal” people because they are physically letting us down so much, holding us back, and hurting us. It’s important to know that you, as in your personality and soul, is a different thing to the physical vessel which you inhabit. Yes we need to look after our physical bodies as much as possible, but what defines you isn’t that, it’s your soul, and yours certainly shines through as an amazing one.’ - Member of the Fibromyalgia support group 💜 #Fibromyalgia #ehlersdanlossyndrome
Physical pain and mental health are tied together. It is super easy to be dragged down mentally by what your body is trying to dictate to you. The goal of #buildaladder
is to not let my body and its pain and chemicals control my life. 😡 Yes I have EDS, but I am not EDS. The mental fight to push on, to enjoy life, to get out of bed...this is my daily mental fight. I don’t win it everyday, but I keep pushing myself to never give up, to keep training. My mental strength can squat 500lbs, deadlift 750lbs, and bench 400lbs...even if my body can’t. 🏋🏼♀️ #ehlersdanlossyndrome
I went out today in the wheelchair for the first time (: I got WAY less stares than I thought I would get, thank god
It was really good to get out even though it was freezing and now my knee is killing me from being rattled around all day, I also now realize how bumpy footpaths and roads are 😂
Also I'm not sure if I mentioned this in my last post, but the hospital called me the other day to make an appointment with the hand therapist. I see them on the 21st and I'm hoping to ask them about getting sized for oval 8 ring splints
So I have my next GP appointment on the 20th, this hand therapist appointment on the 21st and then my post op follow up with my surgeon on the 22nd and I'm pretty excited because after I see the surgeon I'll know when I can get out of this sling! It should be really soon (: #ehlersdanlossyndrome #ehlersdanlos #eds #physiotherapy #postop #wheelchair #invacare #connectivetissuedisorder
Haven't posted in awhile, so quick update. I haven't had a full-blown migraine in almost two weeks now, and it's amazing! I'm used to 2-5 migraines a week, so if this infrequency is a permanent change thanks to the Cymbalta, that would be a HUGE obstacle removed from my life! I could even finally get a job!! I haven't had to take a single Excedrin or miss out on a day of activities because of a migraine since starting this new medication, and it's honestly a miracle. After 10+ years of searching and failing, I might have finally found something that helps!! This is huge!
I spent hours on end, 3+ days in a row, playing Okami and getting to 100% completion - all without having to stop due to feeling unwell or it causing a migraine. I haven't been able to focus on a game that long without getting a migraine since I was little! I keep expecting one to hit, but nothing so far!
Had an appointment with my PCP on Tuesday to discuss my persistent urinary issues and she sent through a referral for me to see my urologist again. She said I most likely have Interstitial Cystitis, which would explain a lot. I also asked about getting some ring splints for my bendy, painful, weak EDS fingers and she's going to look into it.
I hung out with my sister in town today, got coffee and lunch and browsed Goodwill for awhile. I got a gorgeous fluffy blanket and pretty green coffee mug - I'll get photos soon!
I've been thinking about volunteering at an animal shelter/humane society but wherever I looked seems to require a 6-month commitment and I have no idea what my health will be like tomorrow, forget in six months, so I'll have to think on it and maybe ask around.
I've been having trouble sleeping lately (trouble falling asleep, and I keep waking up randomly), could be a side effect, but hopefully it's temporary.
#chronicillness #POTS #posturalorthostatictachycardiasyndrome #dysautonomia #EDS #ehlersdanlossyndrome #chronicmigraines #spoonie #spoonielife #chronicpain #chronicillnesswarrior #disabled #disability #invisibledisability #pixiecut #mohawk #androgynous #lgbtq #nonbinary #genderqueer #genderfluid #nomakeup #zebrastrong #chronicallyfabulous #mentalillness #PTSD
As I lay in bed with tears streaming down my face in the middle of the night for the 4th time this week, I realize that denying the past weeks of medical trauma is only a further detriment to my well-being. So tomorrow, I will dive back into techniques to ease my PTSD. Working through new traumas is incredibly difficult and daunting, especially when you know that no matter what you do to prevent trauma, trauma is still bound to occur in the future. That is life with chronic illness. It is unpredictable. It is scary. It is lonely. I am posting this here in an attempt to remind myself that no matter how many times I have to restart, it’s better than not starting at all. For all who are struggling right now, hold on. As so beautifully stated in The Secret Garden, “It’s the storm, not you, that’s bound to blow away.” #StrengthToMakeItThrough #neverstopfighting #chronicillness #ehlersdanlossyndrome #adrenalinsufficiency #hypopituitarism #posturalorthostatictachycardiasyndrome #ptsdrecovery #ptsd
Clip from tonight’s hammy and glute focused leg day! I had to work at the vet school 1-9pm, so the weight club was closed by the time I got off 🙄 but thankfully McComas is open until 11:30pm Friday nights! I LOVED having so much gym space since it was practically deserted by the time I got there, so I actually got to film some exercises without someone walking through them!! I recently started to HEAVY hip thrust and did 135 for 4x8. I probably could have and should have gone a little heavier, but let my exhaustion get the best of me. Next time I’ll push even harder and heavier and hopefully with a lil better form! As always, tips and critiques on form or ways to improve are welcome in the comments below!!
Song: Better with the Lights Off - New Boyz ft. Chris Brown
I have 2 stories to share; one that is in my Heart but very few people know. When I first heard the song "I can only imagine" by Mercy Me, I was in my most challenging year of teaching 5yr olds to 18yr olds in a tiny Texas farming town. I would come home every night crying and at a loss how to help so many struggling and hurt children. It was evident from the 1st day that growing up in poverty meant entire families including young children helped their parents with daily farm chores from before sunrise and until sunset. The lyrics of this song were reassuring to me that in the far distant future I will see Jesus in all his Glory and all my heartache will be gone. But here is where my story changed, as soon as the school year ended May 2014, I became very sick. I spent all summer traveling to see doctors who had no answers for me, without any medicine to slow or stop my failing health, I was declared disabled 5 months later in October 2014. It was evident by 2015 that all my suffering was due to MCAS but it would take 3 more years before Drs finally diagnosed me. Unfortunately going untreated for 3yrs allowed the syndrome to spread into every organ except for one, my Lungs (yet). Had we started treatment for MCAS in 2014 I most likely would have put MCAS into remission, but we fear it has spread so far that remission is unlikely. Today the song "I can only imagine" represents what my mom and I fear is now in my near future. That I will be blessed to be with Jesus and free from my earthly battles. What I once believed to be in the distant future has now become my near future. A song I reached out to when I struggled with helping students, is now the same song I reach for to be comforted and know Jesus will be with me through all my suffering and beyond the end.
#MastCell #MastCellActivationSyndrome #MCAS #MCAD #MastCellActivationDisorder
#EhlersDanlosSyndrome #EDS #EDS3 #hypermobility
#SpoonTheory #Spoonie #Spoons #spoonielife #ProfessionalPatient #InvisibleIllness #Migraine #ClusterHeadache #SuicideHeadaches #ChronicPain #ChronicFatigue #Chronicillness #ZebraStrong #ZebraStripes #zebra #spineissues #spine #POTS
Dealing with an invisible disability & severe chronic pain means putting on a mask every day & pretending you are doing just fine. However, we are still strong. Disability doesn’t make you weak. It doesn’t mean that you prevail despite your disability. It’s just a new reality. It changes your view & a lot of us use that new view to do things we would have never done before. Let’s change the way we treat invisible diseases. Let’s celebrate those who push forward. We are still people. We are strong & We are mighty. #ehlersdanlossyndrome #invisibleillness @themightysite
Does this count as stretchy skin???? Lol, but seriously what is that facial expression.
A screen shot from the video I was editing.
I have always know that I could do that but this is the first time that I have seen it myself. I have never done it I. The mirror or seen a picture of me doing that😳
This is the #unseen
side of #chronicpain
. I may go to work, I may be smiling and laughing, but my life is still different, I rely on some if these meds nightly, weekly, when I can't get out of bed. People have bad days, so do we, but we also have good days. Remember the next time you see someone taking the elevator up one flight of stairs, or who seems fine parking in a handicap spot, not all things are visible. #invisibleillness
is real, some have it worse than others, some show no signs at all in public. Hell, I have good minutes and bad minutes... There are many people who use this all against us, who may not fully understand that we don't have control over our bodies, we don't want to be hospitalized, we aren't doing it for attention.... Please, try to understand and help us educate those who don't understand all Illness aren't visible.
#fibromyalgia #fibro #fibrowarrior #ehlersdanlossyndrome #EDS #vascularehlersdanlos
Day 7~ today was great!! I had minimal pain and symptoms, and a great mind set. Over all I was pretty happy today which is great cuz I haven’t been in the best place mentally lately. I got my room clean and decorated a little more. I journaled and drew a bit. And I also got outta the house and went to Walmart, which did mess with my joints and pain pretty bad but I’m taking some medicine so it should be okay soon.
Tomorrow I get to see my best friend that I haven’t seen in months and we have a fun weekend planned which I’m hoping I’ll be feeling good for! Anyway, I hope you all had an amazing day, stay positive! Y’all are all very strong and beautiful people 💓🙏🏼🥄 -
-#100spoons #spoonie #elhersdanlos #ehlersdanlossyndrome #pots #potssyndrome #potswarrior #edswarrior #spooniestrong #spoonielife #spoonielife
🍭 Lolita 💋
🔙 Fiesta de Carnaval
🔝Si supieran TODO lo que tuve que hacer para lograr ésta foto y ésa noche, sufrirían afasia.
😅Estuve casi todas fiesta acostada, no tomé alcohol, comí helado, y casi nadie noto que tengo una condición de salud grave, precisamente porque es "invisible a los ojos". Y cuando me conocen; lo primero que suelen ver, es mi carisma 😇.
💓Gracias Elly y Mafer por tanto apoyo.💕
💪NO ME RINDO.
🍭Lolita💋 🔙 Carnival Party.
🔝 If they knew all I had had to do to get this picture and that night, they'll suffer from aphasia.
😅 I'd spent almost all night lying down; I had no alcohol, are Ice Cream, and almost anyone noted that I have serious health condition, precisely because is "invisible to the eye".
And even now; when people knows me the first thing they usually see is my charisma. 😇
💪 I DON'T GIVE UP.
lemme just say that during hospital stays, I feel God so close. it’s like when I’m at my weakest & most vulnerable, jesus lifts me up, because I absolutely can’t lift myself. expectations fly out the window. I don’t know what’s next. it hurts. and it’s hard & frustrating & scary. but He’s there & He reminds me that peace is found. and that there are still about a billion things to be thankful for. He makes me strong & brave, even when I don’t want to be.
Xavier has another MRI this morning to see where the instability in his shoulder is coming from.
Hopefully, this will allow him to have surgery to lessen his pain.
#warriormail #communified #supportperthkids
Day 75: 16/03/18 #photoaday
Done so much today 😴 started off with a physio session at the gym this morning, proud that I still went despite my hip being in a lot of pain. Scroll for a video of me doing my floor exercises 💪🏼 what looks like really simple exercises is really tricky for me because of EDS, the control needed in the muscles and working really hard to not hyperextend which is difficult due to my poor proprioception. But I'm definitely seeing improvements compared to when I first started doing them! Then mum and I drove over to Lidl in Fishponds to try and get some of their new active wear range which has been super popular (it's fab and looks like it should cost 3x what it actually costs!) then since we were over that way we had a spontaneous trip to Ikea which is always fun 😄 got some new storage sorted for my room and some cute boxes etc. Can't resist an Ikea trip 😜 having a lot of pain and fatigue now after overdoing it a bit today but got a quiet day tomorrow just watching rugby so can rest 😊 #physiotherapy #fitness #gym #ehlersdanlossyndrome #EDS #posturalothostatictachycardiasyndrome #differentlyabled #afos
It’s so confusing to me when health professionals ask me if I am healthy when I just told them that I have Ehlers-Danlos syndrome. True, I am active, I eat well, I am within my proper weight range, I don’t drink or smoke… But I have to wrap my ankle with an ace bandage just to sit cross-legged. Healthy is relative. And some of us don’t have the privilege of being 100% healthy despite making healthy choices. In the scheme of things, I’m proud of the choices that I make, and I’m also lucky that I am not one of the more negatively affected EDS patients. This post brought to you by the wish to educate people more about EDS. #EDS #EhlersDanlosSyndrome #acewrap #crosslegged #anklesubluxation #lesspain #morecomfort
HOW TO HACK A REGULAR STATIONARY BIKE INTO A RECUMBENT BIKE
Welcome to this edition of weird exercise, with your host Lacey!•
Dysautonomia patients are supposed to begin re-introducing cardio by laying down when working out to keep a steady heart rate.•
Cycling is one of the best low impact cardio activities, but what if you don’t have a fancy recumbent (aka laying down) bike? Hack it!• Step 1.
Make the floor in front of your bike comfy. I have a carpet protector mat already under this bike, but a little yoga mat will also do the job. Gather a few pillows for under your head - or a pillow like this one is perfect!
Lay on your back opposite of the way you’d normally ride the bike. I.E. face away from the display and have your legs against the cover of the pedals’ gears.
Reach your feet up into the straps (they should be facing backwards from normal) and pedal!
I hope this discovery is as revolutionary for you as it was for me!