immune deficiency

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Increasing anxiety due to covid- do you feel the same?

The last couple of weeks I've found my anxiety is increasing and I think I know why. (Background: both myself and my bf are immune suppressed, he was shielding, and we've both had all the covid vaccines we can)

Here in the UK restrictions are being lifted more and more. For example for a couple of weeks now there is no legal requirement to self isolate. Yes that's no legal requirement to self isolate even if you test positive for covid 🤦‍♀️ And as of 1st April you won't be able to get free covid tests either. In fact I think the only people who can get free covid tests are those going into hospital and those who are vulnerable to covid and showing symptoms. It's completely crazy imo, but you know there's nothing I can do.

So the message I'm getting from the government is "go back to normal". This in itself increased my anxiety. Another layer to add to this is the messages I'm getting from work, social media and people in general is "let's do more, see more people, return to the office, etc." This is feeding my anxiety because my brain is going "it's not safe out there because covid and people are acting like covids over... to your fight, flight and freeze battle stations... ***PANIC***"

I really don't know what I can do to handle this anxiety because practically speaking there isn't anything more I can actually do. I already work from home and thankfully can continue to do so (the message to return to the office is from top level management. My team however are super understanding and supportive!). We already get food shopping delivered and clean it on arrival. I don't see anyone inside with one carefully considered exception: I sometimes have private trampoline sessions in a big hall with only the coach in a mask there, and they're irregular. My parents have a 2 week extra-precautions period prior to seeing me.

There is literally nothing else I can do to keep myself safe and ease my anxiety. I suppose all I can do is wait it out and wait for my brain to get used to the new restrictions or lack thereof.

Is anyone feeling similar?

#COVID19 #ChronicIllness #ChronicPain #Arthritis #AnkylosingSpondylitis #IrritableBowelSyndromeIBS #Migraine #RheumatoidArthritis #PsoriaticArthritis #JuvenileIdiopathicArthritis #ImmuneSystem #ImmuneDeficiency #Biologics


Ugh. Today is one of THOSE days

My sleep has been worse than usual because of all the political stuff plus i had a steroid injection in my shoulder.

I can usually only sllep 45 -90 min @ a time due to Narcolepsy & a brain injury.

We get together with immediate family (parents, husband, brother, sil & my super cute 5 yo neice and the new baby).

We do this Sat & Sun.

Mom asked for us to start anternating weekends to cook (i used to LOVE cooking but really havent in about 10 years).

Anyway yesterday was my turn. (Only once a month).

I made something easy. I started slicing and dicing in spurts over a 2 day period & i did online grocery delivery from Amazon fresh.

I still had troubl with sleep but managed 7 hrs of 12 in bed.

I just got up and feel like i have the worst flu ever (i dont this is just my new norm..but its the best other can relate to).

I have hEDS (ehler-danlos hyper mobility) and it attendant GI and disautonomia (hEDS feels a lot like Fibromyalgia & dysautonomia is a disregulated autonomic system where anything your CNS controls can go hawire). Was misdiagnosed with fibro and CFS/ME for awhile as tjose can mimic what i have...infact i could still have them..)

I just took a breakthrough narcotic (on top of my standard dose).

Now i have to get a shower & do my hair (which has actually been a creative project for 1 non-imaginary hobby other than reading).

Time to take nausea meds & pull out the tall directors chair I use when standing is just too much.

I also haven't been wearingvmy quell device (it is kind of a super TENS minus the contractions that go around calf & helps block pain signals from nerves all over...FDA just made them retract that claim after 4 yrs on market & they can only claim knee but I -and many others- really did get all over benefit from it. I was able to not go up on narcotics and my BTP med usage dropped as did my avg daily pain. They gave a 60 trial with a guarantee it would work withing 30 days. Ceffaly /Cephaly? is like tgat for migrains and Trigeminal pain. I would totally try is if my 20 migrains hadn't converted to migraine w/o headach, TG.

Anyway. My husband has asked that i stop complaining about whatever is going on with me so i really dont have a friendly ear. When he complains to me about pulling his back doing whatever I kinda just want to flip him off these days but dont want the spoons & trnsion that will cause. It really sucks.

So drinking some non cafinated tea & waiting for nausea and pain meds to kick in.

I dont produce enough antibodies either CVID immune deficiency, so in the days of COVID waking up like this is extra scare cause COVID + me = bad outcome.

Just needed a place that would undrrstand. Did a lot of support boards (moderated one pre tBI) on Narcolepsy & it helped & helping people helped so I'm trying again with this spooniy board.

Feel free to as ?'s about stuff in profile or comment

Thanks for the ear
#Ehlers -danlos #disautonomia #ImmuneDeficiency
#Pain condition #Baddays


Vent/help #ChronicIllness #Fibromyalgia #Migraine #ImmuneDeficiency

I’ve been tested for COVID and it came back negative thankfully, however, I’ve been running a fever since Thursday. Tylenol doesn’t bring it down much. Doctor tested me for anything else that could be causing the fever and all came back clear. I work in home care and therefore cannot work until the fever is gone. My boss is mad because I’m immune compromised and have been sick too many times. I’m in fear of losing my job. This stress is eating me up. Needed to vent and just ask for general help. If someone knows of other ways to try and break a fever I will be very grateful.

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Happy Easter #COVID19

I am alone today. Usually we would have a big family-cometogether on Easter with my Dad's side of the family. Today I am alone. And have a coronaisolation-low. My 3 buns show me their back, as they feel that I am slightly aggressive.
Easter alone is no fun.
How Is/was your Easter? #EhlersDanlosSyndrome #ImmuneDeficiency #Osteoarthritis #ChronicIllness #ChronicPain #Depression

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Good Morning #CheckInWithMe #DistractMe

Hiya Mighty friends family community
How is everyone today?
On this Sunday

I'm making chocolate cake and trying to make a marshmallow topping by just putting marshmallows ontop and putting it back into the oven till it warms through n melts.

Mmm. May work may not.
Should have thought it out a bit more out took it out of the pan first 🤣🤣🤣🤣🤣
Sticky business this marshmallow stuff.

But I'm sure itll taste yummy how ever it looks 🍰🎂🍽🍴
Love n hugs to you all Tj ❤😊🤗😘💖🦓🦄🐾🐕🐶🌏

#laughterisgoodmedicine #Love #Fun #Marshmallow #Sticky #Cooking #Mess #sunday #RareDisease #TrigeminalNeuralgia #SphincterOfOddiDysfunction #PsoriaticArthritis #ImmuneDeficiency #Anxiety #PanicAttacks #Selflove #Bekind #checkonyourneighbours #Stayhomestaysafesavelives

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“Weebles May Wobble but they ...”

Hi Y’all-
I’m Sara. I’m new here but also not.
I know I haven’t had much opportunity to open up on The Mighty. That said: Simply being able to read and press the ♥️ button has been an INCREDIBLE HELP. THANK YOU FELLOW MIGHTY WARRIORS!

With that in mind- let me jump on into the deep end (I’m talking diving via springboard-nose plugs and all) of the pool.

I absolutely dig the “Favorite Quotes”
Post (?) Pardon-as I learn more Mighty jargon 😉☺️...

Today- I put a quote up in that thread. Total ‘No Holds Barred’ I could think of many a quote- and will probably add more.
But I digress-

The quote that popped into my head is from a band named ‘NoMeansNo’
The quote:
“Nonsense is better than no sense at all.“
From their ‘0+2=1’ Album.

The thing is - the quote has always stuck with me for various reasons-
Recently, however, it’s become emblazoned in my heart 💜 and MIND.

It has become even more special to me b/c My Best friend
(aka- the FAMILY I Choose) of over 25 years passed away not even 1 year ago (2019)
His birthday was March 11. He would’ve been 46 this year.
Now, Myself and Family/ FRamily alike, must get through April.
April will be 1 year of his passing.
I’m a bit all over the place.
Pinging from thought to thought- just as I did as the dancer that I once was...literally Spinning and jumping-
Only now, the landing is tougher.
The spinning doesn’t stop- even if I look at one fixed point in the distance
(as dancers are trained to do so that we don’t fall over).

Lately I’ve been more like a ‘Weeble - Wobble’. Remember those?
That succinct tag line:
“Weebles Wobble BUT they don’t fall down!”

Ok, Now I’m ‘dating myself in time’ and I can hear the echo of his (my friend’s) laughter just from me writing about Weeble Wobbles... 🤷🏻‍♀️ Oy.

With all the Chronic illnesses that have been w/me since birth + The Cancer I got through + the Cancer’s Aftermath and NOW new Neurology issues -(That list is long enough for this moment) -

Putting all that aside
I can only say: In MY personal experience- My 42 years of this crap-

I am used to being the one who survives in this Intoxicatingly Beautiful Tragic yet Wondrous Life.

I’m not complaining -ok maybe a lil bit- but it does beg the question: “Why me?”

Not exactly “Why is this happening to me?!” Although those days do happen. Y’all know! We all get them 🙃

Rather: “Why Me?”
As in “Why am I still here?”
Watching people who have had the same or similar experiences, illness or issues fade away. . . 🧚‍♂️
“Why am I still here?”
#CheckInWithMe #MightyTogether #CPTSD #SurvivorsGuilt #SexualViolenceSurvivors #IllnessAnxietyDisorder
#non-SmallCellLungCancer #MixedConnectiveTissueDiseaseMCTD #Migraines #Goodgrief #weebleswobble #Neuropathy #ImmuneDeficiency

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Happy Holidays! - What can’t you wait to eat?

Food can be decisive during these times. I always feel guilty when I have to say “no” to someone’s dish at gatherings - and often like I have to explain that there are just simply things I cannot eat, or have contamination of. But, it’s important to remember, we owe no one an apology or explanation! My ‘go-to’, to smooth over holiday meals, is to bring a safe alternative for myself. My favorite? Twice baked potatoes! 🤤😍

#MoonlightLaughter #MoonlightLaughterProject #ReasonstoSmile #PlantingPeace #laughteristhebestmedicine #coping #ChronicIllness #ChronicPain #youarenotalone #autoimmune #AutoimmuneDisease #ImmuneDeficiency #neurology #NeurologicalDisorder #urology #GIDiseases #Undiagnosed

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‘Tis the Season

“‘Tis the season for cold weather, for colds & flus, for aches and pains, for balance issues, for stressful social situations, for wishing to belong, for wanting to start the new year strong.
But while this season can feel grim, it’s important to remember life’s little wins. Whether they’re big or small, one step at a time or them all.
A moment of laughter, a moment of fun, a second of a smile, and feeling like someone - can make a moment larger than you, seem more beautiful than the earth is blue.”

#MoonlightLaughterProject #ReasonstoSmile #PlantingPeace #laughteristhebestmedicine #coping #ChronicIllness #ChronicPain #youarenotalone #autoimmune #AutoimmuneDisease #RaynaudsPhenomenon #sjogrens #ImmuneDeficiency #neurology #NeurologicalDisorder #Migraine #Headache #Neuropathy #Fibromyalgia #urology #InterstitialCystitis #GIDiseases #CeliacDisease #IrritableBowelSyndromeIBS #RareDiseases #Undiagnosed #Cats #Holidays

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The Moonlight Laughter Project

Sometimes it’s hard to look past symptoms, pain, everyday stressers, bad news, and added self-care tasks. I often feel like a one-man-band managing at least two self-care task/homeopathic health habits from 10 different doctors/healthcare providers. And, though it feels daunting, I try to keep perspective - They’re are so many of you (Mighties) that have even grimmer circumstances and I’m sincerely in awe of your strengths. There is one thing I think connects all of our stories beyond diagnoses and treatment plans, for mental or physical health... we move forward. We move forward for love, for laughter, for life’s little moments, for all of our hopes, and for all of our pending questions.
I hope moving forward can be a brighter experience, filled with more seconds of smiles, laughter, and connections. I hope the happy tears somehow outweigh the sad tears. And, I hope that, if anything, this is a start to something that plants peace in more than my own mind.
I can’t promise this will be a perfect project, but it’ll be one done with love.
- Luna

#MoonlightLaughter #MoonlightLaughterProject #ReasonstoSmile #PlantingPeace #laughteristhebestmedicine #coping #ChronicIllness #ChronicPain #youarenotalone #autoimmune #AutoimmuneDisease #ImmuneDeficiency #neurology #NeurologicalDisorder #urology #GIDiseases #Undiagnosed

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Disability and #Fashion

I've been writing on my blog about how my disabilities affect my fashion and what I wear. I'm curious what others experience as far as disabilities affecting clothing choices.

#ChronicPain #ImmuneDeficiency