autonomicdysfunction chronicillness chronicpain dysautonomia invisibleillness pots ehlersdanlossyndrome potssyndrome spoonie heds mcas butyoudontlooksick posturalorthostatictachycardiasyndrome tomorrowisanewday autoimmunedisease chronicfatigue chronicfatiguesyndrome potsie chronicpainwarrior fibromyalgia hypermobilitysyndrome gastroparesis depression hypermobility mastcellactivationsyndrome mcad servicedog anxiety cfsrecovery
Sometimes I do things for my girl even when she’s feeling okay. Practice makes permanent, so I’m just polishing my skills so I can be the best I can be when my girl does need my help. I’m also a super high energy pup, so I definitely don’t mind extra chances for mental stimulation ☺️
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(If you look closely, you’ll notice that I’m wearing my leash around my neck because my girl forgot to put a collar on me )
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Video description: Kelsie puts her front paws up at the cash register at a grocery store. She tried to grab the credit card from the reader, smacks it with her paw when she can’t quite pull it out, and then very delicately pulls the credit card out. Kelsie hands the card to her handler in exchange for a piece of kibble. Kelsie and her handler are wearing matching pink winter coats.
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Audio description: (Allie speaking) “Okay Kels get it. Get the card. Yes get it. You got it. You can do it, get it. You got it. Yes! Good girl!” A couple of women in the background cheer, “Yay!”
The tale of two days with chronic illness . . .
Yesterday my mum and I went out to West London and spent hours walking around the botanic gardens (well, with plenty of sitting-down breaks in the sun in between ☀️).
Today, mostly stuck at home with a head that is on the verge of a migraine one minute, then calms down, only to get angry again for no apparent reason ♀️.
There’s no way I could do today what I did yesterday, which is so frustrating as it shows me again that planning anything with chronic illness is more than difficult.
Who else can relate?
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#chronicillness #chronicloveclub #wherethetiredgirlsare #tiredgirl #chronicfatigue #chronicpain #spoonie #migraine #chronicmigraine #chronicheadache #fibromyalgia #fibromalgia #potsie #potsy #autonomicdysfunction #dysautonomia #orthostatichypotension #hypermobility #hypermobile #jointhypermobility #eds #mastcell #mastcellactivation #mastcellactivationdisorder #raynaudsdisease #healing #recovery #autoimmunedisease #autoimmune
I just felt like someone needed to hear this today. You don’t owe anyone inspiration. You deserve space for your truth to be seen, even if it’s not pretty
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#chronicillness #chronicpain #spoonieproblems #spoonie #spoonielife #mastcellactivationsyndrome #mastcellactivationdisorder #posturalorthostatictachycardiasyndrome #chronicfatigue #pots #dysautonomia #disabled #IC #spooniesupport #mcas #mcad #sfn #neuropathy #smallfiberneuropathy #autonomicdysfunction #autonomicneuropathy #autoimmunedisease #sickchick #youdontlooksick #mastcell #mastie #disabledandcute #painsomnia #spooniesupport
Gah I’m feeling this so hard today. I need groceries, laundry needs to be washed, house needs to be cleaned. My spoonie brothers and sisters know what will happen if I even TRY to do all that in one day. Just the thought of it is overwhelming enough to make me cry.
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#disabled #ableist #disabledlife #disabledandcute
#chronicillness #chronicpain #spoonieproblems #spoonie #spoonielife #mastcellactivationsyndrome #mastcellactivationdisorder #posturalorthostatictachycardiasyndrome #chronicfatigue #pots #dysautonomia #IC #spooniesupport #mcas #mcad #sfn #neuropathy #smallfiberneuropathy #autonomicdysfunction #autonomicneuropathy #autoimmunedisease #scoliosis #spoonieproblems #grief #cfs #cfsme
So I made it come from Connecticut where I had surgery back to Virginia last night. After 3 weeks of being gone I’ve never been more happy to come home and just sleep in my own bed and see my lil pupper. Since being home I’m seeing more of the toll surgery and being in a hospital bed for 12 days has taken on my body. Walking up and down the stairs make my legs start shaking which was unexpected for me but my goal is to be walking more and after this week try and start doing more exercises and build my strength back up. The second picture is of a pin with #232 on it which means I am dr Hsu’s 232nd MALS surgery and placing my pin on his map is symbolic of starting life 2.0. Clothes available using the link in my bio and some money is being donated to Dysautonomia International and some it’s to pay off my now massive hospital bill. #posturalorthostatictachycardiasyndrome #potsawareness #potsawarenessshirt #potsawarenessmonth #spoonie #potswarrior #dysautonomia #dysautonomiaawareness #awareness #chronicillness #invisibledisability #autonomicdysfunction #orthostaticintolerance #oi #syncope #eds #fibromyalgia #ehlersdanlos #mals #medianarcuateligamentsyndrome #unicorn
Can I get an a-freakin’-men?!?!? Emphasis on ‼️IT IS NOT DEPRESSION‼️
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#disabled #ableist #disabledlife #disabledandcute
#chronicillness #chronicpain #spoonieproblems #spoonie #spoonielife #mastcellactivationsyndrome #mastcellactivationdisorder #posturalorthostatictachycardiasyndrome #chronicfatigue #pots #dysautonomia #IC #spooniesupport #mcas #mcad #sfn #neuropathy #smallfiberneuropathy #autonomicdysfunction #autonomicneuropathy #autoimmunedisease #scoliosis #spoonieproblems #grief #cfs #cfsme #hsd
Keeping it real. Had a bit of a today. Sometimes you have to allow yourself moments to let it out. Today I did. Been strong for so long, but on day 17 as an inpatient, it finally got to me I'm on the list for my own side room when one becomes available. Having no privacy and no independence is getting to me at the moment. I need my own space and a wheelchair I can operate myself ♿
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#posturalorthostatictachycardiasyndrome #potssyndrome #chronicillness #dysautonomia #pots #chronicconstipation #oesophagealdysmotility #dysmotility #spoonie #hospital #inpatient #intestinaldysmotility #tachycardia #autonomicdysfunction #chronicillnesswarrior #keepgoing #nevergiveup #syncope #butyoudontlooksick #invisibleillness #gastroparesis #tubefeeding #scoliosis #discprotrusion #ocular #glaucoma #autoimmunedisease #zebra #raredisease #reallife
|This is me. I have M.E.|
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I have M.E.
Myalgic Encephalomyelitis.
Chronic Fatigue Syndrome.
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My mitochondria do not produce the normal amount of ATP (energy). They produce less. My cells are depleted of energy and consequently my body functions at a lower level with less efficiency and a greater cost.
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Think about that for a moment.
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Everything that I do costs me more energy than the average person. I produce less energy to begin with, so everything I do is much harder, more taxing on my body and takes me longer to complete. My body has to work harder to produce enough energy to complete the task and it’s often to a lower standard because I’m so exhausted by that point.
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As a result, afterwards I am so depleted of energy, I’ve used up any reserves I might have had and dipped into future stores too, so I experience a thing called Post Exertional Malaise. A payback on my body. The true cost of spending energy. My body shuts down and I lose function, I can barely speak, think, move. I must lie in bed resting and recovering. A blank screen but behind that the systems are firing and doing their best to restore the energy reserves and top up my cells to their half filled fuel levels again; ready for me to try and pretend to be a normal human once again.
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I have M.E.
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I look completely fine and healthy in this picture I’m sharing tonight but the reality is that makeup is hiding the visible signs of my illness and the majority of my symptoms are invisible to the unassuming eye. To those who don’t know about my health, they will not see any illness. It’s only those who are familiar with me and the signs I typically present with, who can see my illness.
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This week is M.E Awareness Week.
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Every year it comes around and every year I say to myself I’ll be more on it next year and do my best to play a larger part in raising awareness but the thing is, every year my M.E has gotten more severe and I really don’t have the spare energy to write a lot of posts and be super proactive in raising awareness.
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{continued in comments}
This could not have been said better. Dysautonomia is a terrifying and discouraging thing to deal with. You feel like your body is failing you, sometimes like it’s dying, and completely out of control. That is devastating enough on its own, but to be told it’s all in your head when you are at your most scared and vulnerable is one of the worst feelings in the world. I’m not sure there are even words to describe it. So this is why I am choosing to share my story, and raise what awareness I can. If it helps even one person figure out what might be causing their mysterious symptoms, or feel a little less alone, that is something positive that I can be glad to see come out of this struggle.
@thedysautonomiaproject
#potssyndrome #potsawareness #posturalorthostatictachycardiasyndrome #potssyndromesupport #potsie #potsielife #potsiestrong #dysautonomia #dysautonomiastrong #dysautonomiaawareness #invisibleillness #invisiblefight #autonomicdysfunction #spoonie #spoonielife #spooniestrong #spooniesupport #chronicillness #chronicillnesslife #chronicillnesswarrior #advocacy #speakup #startaconversation