Christine,
(This will be the LONGEST REPLY EVER)
I posted a link to this on my Twitter page because, as I’d said, SO much of it resonated with my life. I do not have Lupus, but if you watch “House,” and knew all of MY issues and symptoms, you might find this kind of “funny,” because though I have a wide variety of health issues, many of which seem very much like they could be Lupus, (or precursors TO Lupus, like Raynaud’s, which I DO have, and by 2008, when I REALLY became aware of it, I also had developed EVERY SINGLE TEXTBOOK PHYSICAL manifestation of Sjogren’s, though I’m not only “sero-negative,” even a LIP BIOPSY came back from pathology as, “we couldn’t FIND any salivary glands” IN my salivary gland samples my ENT took of the lip, though he’s done it a million times, but now have “officially” been ruled OUT as having Lupus via EVERY SINGLE TEST for it or associated with it on the PLANET, and much like the running ‘joke’ on “House,” I found out that “it’s never Lupus.”
I have had arthropathies of varying degrees since I was 25- all of these seemingly autoimmune issues started one year after I’d gotten really ill with some kind of mono-like bug, (it lasted a month and was worse than ANY flu I’d ever had,) but didn’t see a doctor, no insurance, etc. at the time, and that “flu” marked a clear line between my being someone who NEVER really got sick to someone who started having 2 fingers suddenly swell up for 2 days for no reason, having low-grade fevers, stiffness in my joints, (to this day,) whenever I DON’T keep moving them and the kind of exhaustion at times where I’d have to suddenly lie down just from running a vacuum across a 10×10 ft. area. You call that exhaustion “spoons,” whereas I can relate to that- I used to say “my meter is running out,” and that “some days, I don’t have as much time on the meter as others.”

My current rheumatologist, the first one I saw seriously about this stuff, (after finding out all of my “autoimmune-like” symptom, combined with the fact that I ALSO have hypertension -listed as one of the reasons I GOT disability because it already damaged blood vessels under my retina and I was only around 37 when that started- AND Degenerative Disc disease which causes my muscles to lock up in tight “spasms,” though they are actually more like, and in my neck when it happens, feel like MUSCLE CRAMPS that last for 24-48 hours, that in turn cause migraine-like headaches that ONLY Valium relieves,) ALSO diagnosed me with Ehler’s-Danlos hypermobility disorder, which explains WHY my spine already herniated 4 discs, (the first 2 in my cervical spine,) because the spine is a giant collection of joints and it also explained why I’m so “bendy,” and why I already have osteo in my hip joints and sacroiliac…for which I’m on MORPHINE because nothing else helps anymore, not PT, not the epidural steroid injections…and surgery for the discs wasn’t an option in 2002 because they told me since my OTHER discs are also losing fluid, the load they’d take on as a result of fusing the missing ones would speed up that process, so I couldn’t risk losing discs above C5 because that could lead to paralysis.

In addition, I now, this year, started having angina, at least 2 types that are different than my “normal” mitral valve prolapse ones that were ‘nothing to worry about,’ but these probably are, considering my father died at 34 of a heart attack and had lifelong high BP…mine has only been high since my mid-30’s and

I’m 46 now, but it SPIKES really high whenever I get angry, laugh hard, or even TALK excitedly! I am pretty sure that I might very well have survived a mild ‘heart attack’ of some sort a few months ago when I was awakened by chest pain in the center, near the top of my sternum- pain that was more like pressure, as if someone was pushing both hands there and leaning their body weight on them, and it radiated out toward both shoulders. It wasn’t a panic attack- I’m not known to get them, though it’s common with MVP/regurgitation- I LIKED being hyper, but have had one or 3 in my life when faced with one of my few phobias, so I know the difference.

THIS didn’t cause my heart to even seem to beat faster or harder than normal, and I used to lift a lot of weights, so I know what muscle pain feels like, too, and I was awake for about 20 min. and nothing got worse with movement.

However, I dismissed it, (I won’t next time!) went back to sleep, and woke up a few hours later and it was GONE! (I have my first cardio appt. since I was dx’d with MVP, which was 6 years ago, in 2 weeks….if I LAST that long! I joke, but it’s kind of scary. MY joking about it…that’s the “actress” in me. I, like you, am also the kind of person people see as funny, vivacious, bold….and yet, I really no longer have any friends because, like you said, it’s a tough commitment for BOTH parties. Unlike you, though, I “let it all hang out” in some ways- I MAKE people aware that I have these issues, but suffer the “consequences” of NOT LOOKING “sick,” so they don’t believe me…until I pull out the valium and morphine bottles or show them the “proof of disability award letter.” I’ve been doing BOTH this year, in part to drive home my point to certain entities…like my condo building’s manager, who wouldn’t accommodate me on when he wanted to send maintenance people here- the early part of the day, until after around 4, is NEVER good…it takes me several STEPS and nearly an hour to completely BATHE most days, and that’s ON morphine.

So, while I’ve manage to evade hospitalization SO FAR, I TOTALLY understand your spoon analogy, live it, and I, too, have to plan my days, (IF I go out at all, which is very rare except in the warmer months,) around how I’m feeling as well as my clothing, (I feel BETTER in heels, though! Go figure,) and DEFINITELY my makeup…I have to use SCOTCH TAPE to remove the thick scales from my face- they don’t peel off and I don’t yet know what this is, but I’ve been doing it for over 20 years!

Vaso-dilation of the nose can REALLY make a girl look “pretty,” too…..lots of GREEN Dermablend or similar on those days!

These aren’t even ALL of my issues- they thought I might have a pheochromocytoma, adrenal tumor that produces too much adrenaline, a few months ago, and the tests were inconclusive- not necessarily about whether I have a tumor- I’ve had MRIs galore for various reasons and one recent one of my lumbar spine went high enough to have shown my adrenals, but that doesn’t mean there wasn’t one, they just might not have been looking for it. What they did notice, (actually I did, since I make it a habit, and suggest everyone reading this do so, is to get copies of my lab reports, imaging, etc., myself, because this year ALONE, I’ve caught reports that did NOT EVEN MENTION the body part that had been scanned, (sacroiliac in that case,) but instead, ONLY mentioned that I had osteo of the hip joints, so I had to make them REVIEW the imaging again- even I could see that was the cause of my pain there, a giant spur, and they DID see that, too,) and I’ve also caught blood tests in which HIGH or LOW levels were MISSED, even the ones MARKED by the lab as such, by my doctors!) I’ve found that doctors. pathologists, etc. only look for what they’re told to find. In my lip biopsy, I SAW the ENT, (chief of his dept. at UPenn Hosp here in Philly,) take out what looked like several little, round salivary glands- I do my homework and viewed several of these biopsies on YouTube, (!) prior to mine, but the labs came back and I was told “they didn’t find any SALIVARY glands in the tissue…I’m embarrassed, this is the first time that’s ever happened…do you want me to do it AGAIN?” NO, I DON’T, that was Dec. 08 and I STILL can’t feel the part of my lip where the incision was made, and by the way, if that pathologist was up on his SJOGREN’S stuff, he’d know that if those glands had been under attack for a long enough period of time, they’d have completely damaged the cell structure- enough so that he WOULDN’T see “salivary glands,” but guess what? He DID see “fibrotic tissue,” aka SCARRING. Gee, I wonder what might’ve caused THAT? SIGH.

Sorry for my rant! The last thing I’ll leave you with is after that episode, when my ENT suggested I see a rheumatologist about the Sjogren’s and my blood came up sero-negative FOR EVERYTHING, ESP. Lupus, which by that time, I was SURE I had, since I’d also been losing hair for the second time in 6 years, the rheumatologist DID add that one NEW dx, “Ehler’s-Danlos hypermobility disorder to my “repertoire,” and then said the following: “I wish I could help you….you’d be better off WITH LUPUS, then at least I’d know how to treat you.” He then added, in a matter of fact way, (because he could see that I’m a matter of fact kind of person, “you’re only 45 and your body is falling apart.”
Until THAT appt., I’d “only” thought I was dealing with everything BUT Ehler’s-Danlos, but the addition of the EDS not only made sense with my skeletal issues and why I have the heart valve problem, but also told me that from here on, I can ALSO expect my JOINTS to start falling apart rapidly from “overuse,” even though they never really had been overused- they just have too much “play” because of loose and/or “stretchy” tendons, ligaments and more fragile skin…which also adds to making IT look older than it should, too!

That’s MY story, and why I can relate to SOOOOOO much of what you write! I wish I was as organized as you are, (I also have, and have even been officially tested, via a battery of psychological tests, ADHD, which I can’t really treat because of my BP. But I find ways to make lemonade out of these lemons.

I have a great, extremely smart husband, (who now, oddly, has issues of his own, mainly terrible allergies and now some skin thing and arthropathies, AND also, ANOTHER form of EDS, good thing we never wanted kids, and HE’S only 37,) who makes enough for both of us, plus my SSDI, and we aren’t into “stuff,” we’re into LIVING, so we don’t need as much as most people seem to. I do MY part by using one of my special talents- I help him behind the scenes with his job- I’m VERY good at writing letters/emails in which I use the law, or loopholes in the law, or work-related issues, etc. to work FOR us when it comes to apt. issues, his job issues, (MY advice got him two $20,000 raises in the first 3 years at his current job, because I can read people, even ones I haven’t met, with very little info about them, and I can do THIS from my COUCH!)
I’ve also set up or exploited situations in the past several places we’ve lived, (I refuse to buy a home, it scares me!) that gave us the legal upperhand and allowed us to move when things weren’t being taken care of, etc….or just allowed us to get out of our leases with no penalties and our deposits back whenever we wanted…simply because I’d found some things that the landlord wasn’t doing or was doing illegally, and they ALL do.
That may sound like I’m a terrible person, but all I do is attempt to make these people do what they are supposed to do, hold up THEIR end of the bargain, and when they don’t, I see that it gets enforced. In the case of landlords, (or big developers,) they hate me, which is a GOOD thing- they know they can’t get anything past me and don’t know what I’ll find or do next, so they’re more than willing to play by the rules…or let me leave whenever it’s convenient for us.

When it comes to my husband’s career, I have the TIME to analyze what’s going on and look up the laws, etc. and the people skills to see the whole picture…from my couch.

When it comes to “nastygrams” that I’ve occasionally been sent by certain entities’ lawyers to “scare” me, I have the legal knowledge, (because I’ve had the time to research those things,) to send my OWN reply without ever consulting a lawyer and my replies have silenced lawyers for the developers of condos in which I was renting as well as former employers while I was still working.

So, while I can’t “work,” I make sure that my husband and I are taken care of in other ways.

….Now, if only I could make a business out of writing letters like that for other people! lol

Christine,

I’M listening…. with my eyes as I read your words, and more importantly, I’m listening with my heart as you speak the words that describe what life is like for me, and so many others out there in the world as touched by your experience as I am. Oh yes, I’M listening, dear Christine. We all are. And we love you just as you are, no illusions necessary. And you have more love and support, on good days or bad, than you could ever imagine.

Bright Blessings,

Diane

simply amazing !!

Ditto everything you wrote and all of the comments posted. What a blessing to find this website, thanks to a friend who has Discoid Lupus. I’ve emailed this article and the Spoon Theory to my close friends and my family; I was so touched, I knew they would be too. I have a sister that has Fibromyalgia also and many times I’ve felt that she is the ONLY one that truly understands, without me having to constantly explain, how I feel. Thank you for sharing your heart.

I have interstitial cystitis, and have had debilitating symptoms for four years now. For a long time, I pushed and pushed and tried so hard to have a normal life. At this point, I have had to quit my job because I was denied a medical LOA (under my 90 days at work), am losing my car because I can’t afford the car insurance without a job (even though I can’t drive anymore because of the pain and fatigue), have been on disability for years, and am in really bad shape physically. The pain and other symptoms are extreme. I have been forced to stop acting like I am okay. On the rare days I have just enough energy and the pain is tolerable enough to allow me to have dinner with a friend, I try to smile and at least be decent company, but I can’t pretend like everything’s fine anymore. Thankfully, the friends I do have are very good ones, and they don’t expect me to pretend. My partner has chronic pain syndrome. He knows what it’s like to live in pain every day, and fully understands that I just can’t act anymore. I am very blessed to have him. Thank you for your article. It helped me feel understood some more.

Thank you Christine and everyone else who shared their feelings. This has made me stop and think, I am in my 60’s and disabled through back and leg problems, having led an active life with no need to drive I now have to rely on family (no friends left around).

I have adapted and accepted my disability rather too well I realise and have given in, to the degree that going out means an exciting trip to the supermarket (lift there and back) hey! nothing wrong with me! I can push a trolley around and do the shopping! Then it’s home and struggle to put shopping away even with help. Then I cannot do anything else for the day, Reality dawns!

I always longed for Grandchildren now I have them I struggle and can’t do the things I always thought I would be doing with them. I will not let myself be upset about it, I must carry on as if this is normal. BUT IT HURTS!

I am not acting, I am living a lie, and saying that I don’t care, I can still potter do a bit here and there, well, that’s not living.

I am going to try and change and live life a bit better, stop living a lie and let people know if I can’t do something because I am in pain, instead of trying to hide my darkness and only upsetting everyone with my frustration and anger at myself.

YES! Thank you for verbalizing these feelings.

I, too, have to do the whole plan thing. When will I take my medicine and will I be able to drive? How do I handle a party with alcohol and everyone trying to give me a drink and trying to insist and then joking about me being prudish.

Does the place have a bathroom convenient? Is there a place I can rest(like some malls have couches and chairs in the hallways?) I learned to stop and lean on the cart in a store and pretend I’m looking at something on the shelf just to catch my breath and get a break.

I carry enough meds and medical contraptions in my purse that it is almost too heavy. And when mine dumps out people try to help but then I get the look when they see the number of rx bottles.

I have a spinal cord stimulator, it has a remote control so I can adjust the electricity. It’s a little bigger than a cell phone, but people always ask me, “Why are you carrying your TV remote around?” So I’ve learned to hide it and to discretely use it. No more just walking out the door, have to make sure the battery implanted in my body is charged enough and if not, I need to bring along the charger to attach.

You truly have a gift. God bless you for sharing. I have ms & wish I could say half of what you’ve written. Thank you for giving me a voice.

WOW is all I can say, you brought me to tears it is nice to know I am not the only one out there. I have RA but I feel the exact same way. Keep strong one day we won’t have to act anymore. Empathy is far more powerful than any sympathy could ever be.

Christine, that was absolutely amazing and exactly how I feel! Thank you for sharing this with us. Wishing you many more Spoons!

Thank you, Christine. {{{hugs}}} Today is one of my non-acting sick days and I just don’t have the energy to say more…

It’s not acting. Nor is it illusion. It’s a little of who you were and what you were like before getting sick.
When I go out, I try to be upbeat and charming and very friendly – but before I go out I determine if I have the energy to go out. Because being the old Shannon who I miss so much requires a lot of energy. It’s acting, but it’s not lying. I’m simply showing a part of myself that is ordinarily swallowed by illness. It’s still me, though. It’s more like a flashback of me, or a memory come to life. But I can only do it for a little bit, and only with time to rest between outings. Because being a butterfly, even the social type, takes a lot of energy.

I had to let you know how much your article meant to me! It’s always hard for me to find the words to express how I’m feeling or thinking and you said it so well!
I’m really bad tonight and my pain was greatly exacerbated by cleaning out the litter boxes tonight. This is always hard for me…any suggestions????
carolann

Wow.
You really blow me away sometimes. It’s so awfully uplifting to hear your struggles and be reminded that there really are people out there going through the same thing that I am and that I’m not a crazy hypochondriac…that it takes far more emotional and practical effort to be sick than it ever took to be well. This one made me cry…for both of us.
I also have lupus, I’m 24 now and was diagnosed 7 1/2 years ago…I was just diagnosed as also having the limited systemic form of scleroderma and pulmonary hypertension, which has left me in an awful place with both my health and my head. I don’t know how to act like I’m normal anymore…for a few years there I was pretty good at it, but as the good days became fewer and fewer and more friends dropped out of my life and I became unable to work I just stopped trying…it hurts when it’s depressing to just be yourself…

Great essay, Christine. This one really hits the nail on the head. Even though I’m one of those people who might say “I need a nap,” or “Aw dangit I forgot my meds” or very very often “I have to sit down now, I can’t stay on my feet that long.”
I can see why you don’t want to be seen with a cane or wheelchair. I get angry at the condescension and the way they expect someone physically sick to also be a little dumb in the head or to act like a child. And hold the gratuitous medical advice, most of which I’ve heard a thousand times and would do serious damage to my health if I did it.
Thanks for this rant. You’ve reminded me women have a lot more to do to keep up appearances in this culture. Me, I like the pallor, it works for a creepy goth who always wears black.
But I want the power chair, want to get out as if I could walk and be able to keep up without always being left behind.
Robert

Hay Christine,
Call me obsessive but i read your essay twice. I must say good on you for letting out who you really are. As being some one else is extreamly fatiguing. I only learnt this lesson this year – glad i did though.
Going through chronic pain and fatigue is neither easy or fun, but life changing. A Day at a time my Rheumatologist says – i get it now!!!!!
Any way well done once again, and you being you – a great mum, sister, daughter and wife.
From Mellissa Gaynor.

Christine,
That was a very good read. You put to words what is in most of our hearts and brains. My Dad suffered back to back stokes early this year-2008. Since I live the closest to my parents-I became the main caregiver. Yes, I am older with grown children & I don’t work because I am on disability-but of course that doesn’t matter because my brothers feel that my parents were there for me thru all my hospitalations and for my kids when they were young in my first DX’D years. However much I understand their feelings-the bottom line–is—there is still no acknowledgement that their sister is sick and being a caregiver to my Mom as my Dad is stuck living in a nursing home & Mom doesn’t drive and has always been a nervous wreck & is totally dependent doesn’t seem to phase them at all. They just expect it!!! I do it because of my love for my parents & I have had a few crashes (flares) this year. Sorry for ranting, but, I just wanted to let you know how much I appreciated your post and to tell everyone-just take it one day at a time-because it is all any of us can do!!!!!! Thanks for listenning–Love, Patrice

Wow.
I agree with all the above comments, and would just like to [slightly] mis-quote someone famous (famous to us Brits anyway lol!), I think of him whenever I’m on the site, think of you, or just think about spoons…
“Never in the history of invisible illnesses has so much been owed by so many to so few. Well, one person actually!”
Thank you Christine. For sharing some of yourself and letting us in, and also for giving me the words, phrases & strength to express how I really feel to those I have to live with.
All the best
James***

Thank you so much. It’s what I’ve been feeling right now. Thank you. Thank you.

Thank You Christine for opening up and sharing what it is like I identify with you on so many levels I too have a invisible illness I have Fibromyalgia and Chronic fatigue Syndrome and I have a limited amout of energy and I have to spent it wisely and mangage it well. Thank you so much.

I really need to share this with family and friends. Today is my 38th birthday.
I still have a tough time not being angry with myself, short tempered with pain or embarrassed at large wheeled bags, sitting on the front of the bus, asking for a set in front, asking for a seat anywhere – canceling on friends…
I have Sjogren’s Syndrome.
www sjogrens org, www sjogrensworld org
Sending some love out there,
Paige

Thank You for speeking out for so many of us who suffer in silence. Family and friends try to understand, but sometimes fall short. I feel your words came from my heart and you posted them for me. Thank You and Bless you!

I am speechless, in awe, overflowing with compassion and my heart is racing for 2 reasons. A family member sent this to me so I could better understand her daily life and also because it could have been copied from my own journals. wow ….

I had a sister who had a mysterious disease that was finally diagnosed as vasculitis. She died 3 months ago of an overwhelming infection because her immune system was weakened by years on prednisone. Because of your sensitive sharing of your own feelings, I finallly know how she really was feeling when I would ask how she was. I wish I had known then what I know now. I would have asked instead, what can I do for you today? One happy thing I did do for her. We went on vacation together on the proviso she could rest when she wanted or needed, and could say no to any activity if she wasn’t up to it. Of course she also expected my husband and I to go ahead with the activity. We had a wonderful week together. Then her tragedy struck and even the best doctors in the country couldn’t save her. I am lucky to know her last week out of the hospital she ate what she wanted, enjoyed musical outings, and swam in a lake with me.

I couldnt believe it as I read your words. You spoke every single solitary word in my own heart and life. EVERY one!
Our diseases are not the same, but the outcome is.
Thank you sister of my soul for writing down for me my own thoughts and feelings. I am going to save this post and reread it at times that I need to.
Here’s mud in your eye 😉