Deformity

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I have no more energy left

Tonight is one of these nights multiplied by a million
I’m done...
I’m pooped... I’m 50 years old and I already have 40 years of #RheumatoidArthritis #Fibromyalgia #sjogrens #MajorDepressiveDisorder #ChronicPain #Fatigue #Loneliness #Disability #Deformity
Tonight I feel like I’ve had it, pretending to be ok is just too exhausting...
it feels like I’ve been slowly killing myself pretending everything is okay
Bitterness is eating me up inside out
Maybe if I give up it would be easier and less painful.
Why should I keep fighting, it will always be the same . no change beyond the horizon
I miss my old self when it was all tolerable, no force to enjoy anything anymore
Nothing is helping today, not the purrs of my princess nor her warmth not even floating in the sub reality of my book.
I’m soo tired, so angry I cannot even cry!
Too much is just too much to take
I’m done

4 comments
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Still #Undiagnosed

Big hugs to those out there facing this, whether you are just at the start of your journey or years in like myself, with still nothing but a load of “all clear”s from many different departments, both NHS and private.
I’ve fought this for what, four years now; doctors sigh when I recount my symptoms, my fiancé rolls his eyes when I tell him about my pain. My family was always too self absorbed to pitch in, they and my friends hastily dropping away as they realised that I couldn’t do things for them anymore, fit into their schedules as readily, or maintain a permanent positive outlook in the face of everything. Eyeing me sideways as I shift in pain or decline an activity far beyond my reach, some even outright claiming me to be a fraud behind my back.
It’s not all intangible though, and this is the kicker - for all the invisible aches and pains, the lack of energy that is so hard to convey, the huge gulf that lies where my support network should be, there are actual physical signs, red flags that I feel have been completely ignored; night sweats, recurring fevers, lymph nodes increasing in size, density and number all over my body, an unknown, slow-growing lesion in my spinal cord and now a bone in my shoulder growing abnormally, first raised to my GP in late February. Still no diagnosis.
All other symptoms aside (but should surely now be fully included?), with this enlarged bone, should I not have been put on a cancer pathway by now?
There have been so many delays - GP told me to wait for the initial X-ray appt (which never came) then was told when I checked 2wks later I should’ve rang the hospital to book it. After finally getting the X-ray and chasing the report a week or two later, it turns out the doc only asked them to look for a “floating rib” rather than the bone enlargement, so it came back clear. Another week of them looking at it again confirmed “deformity” and further imaging was requested. After another 2 weeks of nothing I contact them to find that it had been rejected as not marked urgent. Doc marks it urgent, I phone to book only to find they’ve marked me down for the wrong shoulder and they need to confirm the right one before imaging. A total of five weeks plus delay on top of several years shouldn’t mean much at this point, but now I’m actually really very scared. This new thing hurts in a different way to everything else (it really kicks in heavily at night and I have to use oramorph on top of usual pain meds to try to beat it back!) and this weird bone seems to be getting more and more prominent. My arm keeps going tingly and weak and rubbery lumps are appearing around my collar bone and neck. They aren’t listening, refuse to acknowledge the lumps and keep messing up - I really don’t know how to get them to take this seriously.
I’m just so worried that it’s going to be too far gone by the time they catch it 😕

#ChronicPain #lymphadenopathy #bonepain #Deformity #ChronicIllness #alone #Undiagnosed #doctorsdontlisten #ScaredItsC

4 comments
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Do you have a favorite clothing item that makes you feel secure? #Deformity #Anxiety #Depression

It is so cold today, I’m wearing my leg warmers to work. I just realized that not only do they keep me warm, but they cover my leg braces and will relieve me of some unwanted staring. A two for one bonus! I’m interested to know if anyone else has an article of clothing that gives you comfort?

17 comments
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What’s it like for others living with a deformity ?

I’m 19 I was born with a deformity in my right hand and right chest muscle. I just want a little peek into the lives of others to contrast how we’re similar and different. #BirthDefect #Deformity #yourlifematters #Tellme