I have had a bad backslide this month. It started with headaches in the first week of June, then bowel inflammation and bloating, then weakness, exhaustion and a constant buzzy/numb head… On the 10th, I had one day of terrible pain in all my joints: hips, shoulders, hands, wrists. On the 11th, I had a histamine reaction with my throat spot getting very itchy for the first time in ages, coupled with the internal fire that I call flushing. On the 13th, I had unusally bad blood pooling and swollen hands and feet. On the 14th, I woke up with the worst muscle pain I have had in probably over a year… full-body, every movement hurt, muscles I forgot existed… and it sent me into the emotional doldrums: I can’t do this anymore. What’s it all for? I can’t live like this. My whole life was useless. I never had a family, I never made a difference in the world, I worked and studied and worried for nothing because it was all for nothing and useless and life is meaningless blah blah blah… That was brought on by seeing an old friend’s holiday photos of beautiful people gallivanting in the sun with their beautiful children and their happy, youthful I-haven’t-aged-a-bit-in-the-last-23-years smiles. One should never look at Facebook when they are bedbound in extreme pain and it’s summer.
On the 15th, I realised the deadline for Social Security to receive my disability paperwork (work history and function report) was the next day and I panicked. I’d read the letter wrong and thought I had another week. It should have taken a week to do, but I had to cram it into 24 hours. They write on the form that it should take about an hour to fill out, which is hysterical. It took me about 10 solid hours. I had to research the jobs I had and how much I was paid back to 1997! I had to describe every position I held. I had to estimate things like how many hours a day I stooped, bent, knelt, sat, walked etc. For each position! Seriously? How many hours a day I bent?? For fuck’s sake. For all my restaurant jobs, it was fairly easy: I walked all day, every day. But, they wanted to know things like how many hours a day and days a week I worked. Well, some weeks it was 3 shifts, 10 hours a day and some days it was 14 hours a day and 7 days a week (when we were opening restaurants). I was that person who was writing in tiny letters in the margins, giving explanations and qualifiers that will never be read. They’d ask something like, “What did you do all day in this job?” and give me one line to answer. What didn’t I do all day? That would have been easier to answer. As COO, I did everything. They wanted to know how heavy objects were that I lifted: “What was the heaviest object you lifted? How much did the objects that you lifted most of the day weigh?” I wound up texting my friend from my old job: “How heavy do you think 3 of those dinner plates loaded with food were?” We were blessed with the heaviest plates in the industry and the heaviest food. Tex-Mex doesn’t leave any blank room on the plate.
For the function report, they asked the same questions different ways for 12 pages. Maybe they wouldn’t be the same answers with other illnesses, but with this one they are: “How has your social life been affected?” “How have your cooking habits changed?” “What household chores can you do?” “How have your hobbies and past times changed?” “What can’t you do now that you used to be able to do?” Over and over: I can’t do any of it anymore. All of it has changed. I was excited when I got to the question about dressing myself: Yes! Yes, I can do that!
So, the 15th and 16th turned into the familiar nightmarish feeling of deadlines and all-nighters. Oh, how many times did I leave all my assignments and studying to the last minute in college. It was my M.O. Always was, even in secondary school. I stayed up all night studying for my leaving cert (the final exam at the end of high school in Ireland) maths exam and then took a nap in the early hours of the morning and slept through it! (Side note to any young ones reading this: I thought the world was going to end. I was a perfectionist even then and, when they wouldn’t let me retake my exam, I thought my future was lost… I’d never get into the colleges I wanted to attend… it would be a black scar on my record for evermore… But, guess what, it made no difference in my life. You’ll be ok, no matter what the outcome of the leaving or the SATs or any of it. Life is much, much more.)
I put ear plugs in and sat secluded for hours upon hours trying to fill out the paperwork. My brain wasn’t working and I had to get my husband to help (“What symptoms do I have, honey?” “What hobbies do — did — I like to do?”). My hand was cramping and my vision was pretty much gone, so I went to bed and finished it the next day in a complete stupour of pain and nausea and bricked-ness. The SSA said that it was okay that it was late. I called 3 times to verify that and they kept saying it’ll be fine, so fingers crossed I didn’t screw myself.
On the 17th, I awoke in the middle of the night with an evil migraine, which is still lingering today. I have been chilled and achy and wired the last few days, trying to figure out if it is something I ate that caused the joint pain, muscle pain and migraine — is it because of all the histamine foods I have been adding in? — or is it just the unrelenting disease and the stress and overworked brain? Last night, I couldn’t get to sleep until 1am and I awoke at 5am with my heart galloping from a nightmare. I’ve been wide awake with my brain on fire ever since. Can’t deep breathe or meditate, can’t concentrate or be productive, can’t jump out of bed and tackle the day. Just have to lie here, my body a bee hive of activity and my eyes barely able to focus.
Chronic illness gods, I’m sorry I mentioned that something was working. How dare I?! Please give me some respite. I’ll be good.
Rag and Bone Shop of the Heart 
This post makes me want to punch the chronic illness gods in the liver. Or livers. Why are they so damn cruel!?!?! I’m going to sacrifice chocolate to them tonight in your honor.
I’m angry at them for you.
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Thank you! I’m going to sacrifice ice cream in OUR honors. 🙂
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If only martinis….. 😉
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Ha! Or margaritas on the beach! I’ll sacrifice to the gods every day for that. 😉
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Oh no, I’m so sorry. It’s the setbacks that are the most suckiest things ever. Especially when it’s sunny and everyone else is having fun. And benefits forms are even more suckier! I hope it evens out again.
PS. I call it flushing too.
🙂
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Thank you for the empathy! I do flush, but I also get this incredible burning internal heat that doesn’t cause facial redness, but I call it flushing, anyway. I think they’re all related. 🙂
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I get both too! A really intense burning inside of me or under the skin. The closest thing I can describe it as like is feeling the sunshine scorching against your skin. Ah, the joys! 😉
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Blah!!! Mean illness! Go away! I’m so sorry you had a crappy few weeks! I had a ‘pain crisis’ yesterday- just like you describe- like every pain nerve going off at once! Overdoing it = bad plan. Hang in there, take good care of yourself, rest a lot, eat well, and the worst will be over soon!
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Thank you so much for reading and commenting. Your support means a lot! Hope your pain crisis has abated (pain “crisis” to differentiate it from the normal, everyday pain, ugh).
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So sorry Sara for this downturn. Sending you love and the never ending question….what can I do?
Sent via the Samsung Galaxy Mega™, an AT&T 4G LTE smartphone
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Thank you so much for wanting to help, Maureen! I promise, I will tell you if I can think of anything. X
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Ewwwww, I remember that paperwork! Good luck! I got turned down the first time, but I got it the second with one of those tacky law firms that advertise on TV. The whole process is so dehumanizing. I hear you on the Facebook thing too! I had to hide certain people from my newsfeed (the same people … the ones with adorable children and magical vacations). So sorry you are having the nightmare flare from hell.
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Thank you for understanding the dehumanizing aspects of applying for disability AND watching perfect vacationers! Maybe I should hide some of them from my feed… or keep them for inspiration?
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Nooooo Noooooo Nooooo. I hated the paperwork I had to fill out for the disability allowance here, I too was a margin, extra pages sort of girl. As for the bad month, the bad nights, Noooo Noooo Nooo. How mean. I hate to curse but this deserves a big, FUCK. Hopefully tonight will be nicer to you and your body behaves for the weekend and beyond. x
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You make me smile every time I read your comments. Sorry for the ridiculously delayed replies and thank you for cursing the universe on my behalf! (Irish and you hate to curse?? 😉 )
XO
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I felt the same way about the disability paperwork! It was so depressing to have to focus on all I CANNOT do rather than the things I can…
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That’s what’s inspirational about you, Jackie- you remind me to focus on the things I can do, which is very, very hard for me. X
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Thank you!
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I want you tobe aware, the most likely will send you to one of their chosen doctors for an exam and then they will send you a denial letter, but DO NOT BE DISCOURAGED. This is just the process. APPEAL APPEAL APPEAL! It goes up the line with each appeal to different people to approve or deny. The first set of eyes on it are not even medical professionals, because my sister got offered that job and her highest education at the time was a Bachelor’s in Psychology. It’s basically 90% denial on everyone on the first application. I got approved on my first appeal. It took less than 1 year, approximately 8 months for approval and another couple months before a first check. Just wanted you to be aware. A lot will also depend on what your says, if they agree you are disabled, and their medical notes. Also, I suggest a lawyer or using allsup.com rather than doing all this work on your own. Someone who specializes in this will know how to word the answers on the applications. They will ask you the questions and summarize for you and ask if that sounds sufficient. (much less stressful to have someone else filling that out – but kudos for you for filling out all that stuff! ugh not a fun job, not a fun thought process, it is depressing and overwhelming.)
I also agree with your comment about Facebook. and all those thoughts you have and depressed, not having children, having to leave a career, school for nothing… what am I even here for? …etc,. So, I hear you and I understand because I feel the same way.
I too scramble to think what caused me to feel so terrible. My mind races wondering what I did wrong, even after 8 years of this, I still think the same thing, oh no, maybe I shouldn’t have done this or that. This seems to be the nature of the disease, it’s predictably unpredictable. Something you eat today can be fine, but if you eat the same thing tomorrow your body will be like.. NO REJECT… This thing is waymore complicated than any doctor or scientist can figure out so, how are we supposed to figure it out? There isn’t an answer. It’s an illness that makes little sense. It must be something so internal and so complex. It is just so distintly different from “normal illnesses”, even other chronic illnesses, due to the “after affects”..you never know which thing affected you… was it too little or too much sleep? Was it adding or taking away a food or supplement or medication? Sometimes our bodies react to something that happened yesterday or a week ago, it just hits us strangely. I’m currently recovering from 3 weeks ago, driving too long, in the heat. I’ve had the worst headache ever and body aches and joint pains worse than usual, several vaso vagal syncope episodes etc.. June has been a sucky month!!
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Thank you for the advice to continue appealing… I need to keep that in mind because it seems like such a hard slog. I do have a lawyer, but I’ve learned that they are useless so far. I didn’t know they could/should help with the paperwork (and they’ll still get paid, of course). I’m hoping they can still help in the long run.
I’m so sorry you’ve had a rough month, too. Vasovagal syncope is terrifying! I’ve had to be carted off in an ambulance too many times after collapsing. Hope you’re doing ok otherwise? I’m not caught up on your health at all. You were having heart trouble, right? And how’s your dog? Happy to hear your car is working (weren’t you having car trouble a while ago, too? My brain is mush. 🙂 ).
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When I was recovering I relapsed every 3 months or so initially. It was soul destroying and I really feel for you. It took about 6 years for me to stop relapsing for no good reason – now if I relapse it’s for a reason (I caught a cold or bug, or had a bad reaction to a drug or food), so at least I feel more in control. Hang in there and good luck with your disability application (I know the situation is very different here in the UK, but they turned me down initially but I got it on my second application after employing a specialist lawyer to help) x
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Soul destroying is a good way to describe it. It wouldn’t be so hard without the constant fear of going back to the darkest days last December or worse…
I’ve got to work on the fear. And, of course, having some sort of disability income would help that, so fingers crossed. X
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[…] appointments and the odd dog walk on the scooter. I do think I’m marginally better than this time last year, though, which is heartening considering the horrendous ordeal of last autumn. Mostly, I think this […]
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