My husband and I have been married for five years- and before that we were best friends for sixteen years. It's probably safe to say that we know each other about as well as any two people can. You would think that with such a strong foundation for our relationship, one thing that we WOULDN'T have any trouble with, after all that time, would be having a good time together. Unfortunately, like many people who have been in a relationship for awhile (and especially something that's extremely common with parents of young kids like we are!) - fun had fallen off of the top of our priority list quite a while ago.
When we were younger (and back when we were just friends) - we did all kinds of things together. Festivals, renaissance festivals, amusement parks, concerts, bowling, street faires, - you name it- we were all over the place at all hours of the day and night. We never had a hard time finding things to do together, but even as we settled into a committed relationship and parenthood, we still enjoyed many of the same kinds of things, they were just altered by our desire to take our kid along with us (and because we have such a laid-back kid, we have taken him nearly everywhere we've gone right from the time he joined our family!). But more than familiarity and parenthood - one thing VASTLY affected our free fun-time together: My becoming disabled by Ehlers-Danlos Syndrome.
Yesterday, we attempted to have an evening together that was not much unlike things we've done hundreds of times in the past - we made some plans just a few days in advance, we planned to squeeze in some fun-time around my husband's crazy work schedule (he works for himself, so he doesn't have a 9-5 schedule) and we threw together a plan, despite my not feeling well and not having slept at all the night before. It was the first time we'd decided to do something without our son (the show that we were going to see was for adults) - and the plan involved my parking my car, walking to a bus stop, riding a bus for two hours up to New York City, where my husband would pick me up and we'd head to the show he wanted to see.
Unfortunately - everything about our date-night went very *VERY* wrong. It started small - my husband got held up at his last job. My husband is one of those people who thinks that he can do ANYTHING no matter how ridiculously short a chunk of time he has, and as a result, he's always running late, or telling me he'll be "right home" and showing up six hours later. He doesn't INTEND to do it - but he's the world's worst estimator of time. So naturally, he thought he could finish his job, get to the subway, rush to where I would be getting off the bus, and not have me waiting long... but that didn't happen. (and by the way, there's no cell-service on the subway). The other problem was that instead of communicating with me - or basing his plans around the bus-schedule, my husband tried tracking our bus real-time on their app, which showed him my bus was running really late. We arrived at 6:15, and he thought I wouldn't be there until 7.
When my bus pulled up to a dark street in the middle of Manhatten, I was exhausted and cold, and tired - and I REALLY had to pee. I've got interstitial cystitis, which for those of you who are fortunate enough NOT to, it's like having a permanent UTI. I've had the symptoms of a kidney infection for several weeks, so when I say I had to pee- I mean, I REALLY was uncomfortable. My husband knows how I feel about public restrooms (Saying I'm "not a fan" is a severe understatement) - but I guess he didn't really think about the fact that I'd never use a bathroom on a moving bus. Or, that when the bus stopped and let us off, someone would be in there anyway - and we would be shoo'd off the bus. Everyone who poured off the bus with me disappeared in minutes, getting picked up and walking off into the city. There I was - with an armload of things he'd told me to bring - my big body pillow for the ride(s), my heavier coat, a snack I'd packed... I was pretty much stuck there where the bus let off, because I am typically in a wheelchair any time I'm walking more than a block or two. My hips/knees and ankles can't handle long hauls - and two blocks is a long haul these days - so when I got off that bus, very uncomfortable, and I start calling to see where he is - and I get no answer, you can see how one might panic.
By the time he texted to say he was on the subway en-route, I was already trying to figure out how to get back on the bus that had just arrived, that was heading back home. A two hour nap on the bus (after finally getting to pee) seemed like a fine alternative to standing on a cold,dark city street alone. Unfortunately- the driver could only take cash, and you couldn't buy a bus ticket online or over the phone using a credit card close to the bus's departure. By the time my husband came around the corner to "pick me up"- a full FORTY MINUTES after the bus had dropped me off - I was LIVID. First of all, I had to pee so badly that I was in panic-mode. There were no businesses in sight, no cabs anywhere near where we were dropped off, just the occasional person walking by from god-knows-where. There was no ATM within a mile and a half (said my cell) and when my husband finally got there, only to tell me that "picking me up" meant that he was going to come GET me, and we'd walk a few blocks to the subway... I was beyond angry. There were ugly words exchanged - and with no cabs patrolling- I had literally NO CHOICE but to speed-limp almost five blocks in blind-panic trying to get to the subway, so that we could get to the next stop (Times Square) where he ASSURED me, there WOULD BE a bathroom. I was DYING.
I still don't know how I made it - because that "short walk" that was "just around the corner" involved limping, in so much pain, easily a MILE in total - not to mention up and down over a DOZEN flights of stairs, plus a panic-attack inducing ride down the world's tallest escalator.
It was 7:39 when I finally got to the McDonald's in Times Square...
...where I found out that the women's bathroom was UP ANOTHER FLIGHT OF STAIRS.
The fact that I made it into the only working stall out of three after all of that, without having peed myself during the entire miserable hour it took to get there- was a miracle in and of itself. I was mortified the entire time, trying to limp my way there, while focused on nothing more than my pelvic floor muscles. I was so tensed up and petrified - it's no wonder I was in so much pain.
When I came out of the bathroom, I collapsed into a seat at a table, that would have otherwise been a beautiful view out into the heart of Times Square. I promptly broke down, sobbing hysterically. It was a mixture of exhaustion, being in much pain that I couldn't see straight, and the totality of the situation - I was SO angry, frustrated, hurt, and in so much pain that I couldn't do anything but sit there and cry for over an hour. My husband first waited downstairs, but I wasn't walking anywhere at that point - I don't need to tell you that we didn't make it to the show my husband had wanted to see.
After taking the maximum dose of pain medication - meds for the cystitis, and trying to calm myself down (because being angry and upset wasn't helping my pain) - it still took hours before I was willing to go anywhere. We got home at four o-clock in the morning, and I spent my entire day tossing and turning, trying to focus on anything other than the blinding pain I've been in from severely over-doing it last night. I know that my husband was really apologetic, and that he was listening when I explained on the way home just how seriously I was hurting and how unfair it was to put me through that - but I knew that this could never happen again.
When I finally crawled out of bed this evening - I had another thing to add to the list of regrets about last night. I don't WANT to give up on our having spontaneous fun. I don't want to give up doing "crazy" things. So how do you go about making sure that date-night, or any planned activity, doesn't end up going completely awry and landing you (or your disabled significant other, if you're the able-bodied one in the relationship) - recovering in bed for days afterwards? I decided to put together some tips for taking your significant other into consideration when you want to do something together.
One thing is for sure - in almost all aspects of life, disabled people everywhere just wanted to be treated like ANYBODY ELSE. But dating someone disabled is the one time when you really SHOULD consider (and plan for) your significant other NOT being "just like everyone else" - because that's how you avoid a disaster like last night was for us. Here's a few tips for having a fun, interesting and most importantly - a considerate time with your disabled significant other.
First and foremost - plan to do things you know that the other person can handle. You wouldn't take someone who can't handle long periods of time in the heat to an outdoor summer concert. If you're new to the relationship, or if your significant other's health is constantly changing, this means communicating with them about how they are feeling and what they can handle RIGHT THEN. Yes, it means it's difficult to plan some things way in advance, but it also means that you're more likely to end up not having to cancel plans entirely and that you'll both get to enjoy them. So if you ARE going to plan something far in advance - like traveling somewhere - make sure you check into accommodations in case things change. If you're planning on going to another city and visiting a zoo - what can you do if your significant other is having trouble waking - or if the weather is way hotter than you'd originally planned for. Maybe you could have a back-up plan, or maybe you can make minor adjustments to your plans (like renting a scooter or wheelchair!)
Next - keep in mind ALL of the disabled person's special requirements. Does she need to have quick and regular access to a rest-room? If your significant other has to take medications at certain times, make sure she's packed them. If she needs a drink to take those meds - or has to eat before taking them, then plan for that. (Don't find yourself somewhere where you have no access to food for hours at a time!) - this can mean simply planning ahead and packing snacks, or stopping to get a drink whenever you have a chance, but it can also mean the difference between a small inconvenience and both of you having a miserable time. Does walking long distances or standing for long periods of time cause problems? Then plan on bringing a wheelchair - you can rent one if you're on vacation or visiting most theme parks, zoos, malls and other popular locations. If you're in a long-term relationship, it may be a great idea to have a serious talk about how buying a wheelchair could positively benefit the both of you and your ability to do far more things without costing one of you days of unnecessary pain!
Make sure - as the able-bodied person, you take into account how things like being late will affect the disabled person. Let's face it - we are all late now and again - and disabled people are late more than most. But when a disabled person DOES have the opportunity to do something special, and they get up, get dressed and are prepared to get out of the house, and then they are kept waiting for a long time, there's a good chance that those spent-spoons are going to catch up with them and you're going to lose your window of time. For many of us with chronic fatigue syndrome, the seriousness of suddenly being overcome with exhaustion is all-encompassing. If I'm up and moving, and then suddenly find myself waiting around for long periods - my energy can QUICKLY be zapped and that's the end of my day. If you make plans with someone who is living with chronic-illness, plan to be on-time, even if they are running late. Plan for things like traffic (get whereever you need to be AHEAD of time, rather than taking the chances you're going to run late) and make sure that if you're picking someone up or meeting someone -that you know exactly where you're going and that you are there when you are meant to. These days, apps like Google tell you how long your travel will be (WITH TRAFFIC!) - so plug in locations even if you know WHERE you're going - because it will tell you how long you're going to take getting there!
Have a back-up plan in place for EVERYTHING. One of the things I pointed out to my husband after our disastrous date night was the fact that he should have known I couldn't handle getting off the bus and walking a long distance. If he knew that he wasn't picking me up in his truck - and especially that he was going to be late - he could have called ahead to have a cab meet me when the bus arrived. This would have meant that I didn't have to sit anywhere, waiting, AND that I didn't have to walk anywhere.
In your case- this means taking a coat in case it's suddenly cold, packing an umbrella, extra meds - it means packing a bag to carry on the wheelchair in case you need to take things along with you. It means planning on something indoors in the event that it's too hot or too cold to do whatever outdoor activity you'd wasted to do.
When it comes to food - keep in mind that while everyone needs nutrition- it's NOT the same for everyone.
My husband has known me for a long time -and he's always known that if I get hungry, keeping me waiting is NOT a good idea. I get cranky and miserable VERY quickly once my blood sugar starts to drop, so he's planned around that for most of our friendship, long before we were a couple. But now that I'm living with chronic illness - I have other issues with food that are just as important, for example, it's important to ask about the contents of food before I eat things and find out the hard way that they contained an allergen (I'm allergic to peppers and black pepper, which fortunately won't kill me if I eat a little - but if I eat enough, it'll make for a really miserable day if I don't get benedryl quick.)- others aren't so lucky and running into an allergen or a food that triggers serious GI issues can impact the rest of your day and turn into an ER trip.
Make sure that if you want to take a disabled person to a new restaurant - ask ahead about their dietary restrictions, and make sure you know what's normal - how often and how much do they eat? If a person has a feeding tube or issues with Gastroparesis - planning a date around food might be better avoided, but you won't know if you don't ask! Some of us are grazers who go long period without eating, or hardly ever eat much of anything, so a date based around checking out a food-festival might not be the best idea. Other folks might love to eat -but then need a long period of time to recover afterwards, so check into what's normal. You can always have a nice meal - then go sit somewhere calm and relaxing for a time, and THEN move on to do something else - but knowing what the person NORMALLY does after they eat. And keep in mind - even if eating isn't part of your plans for the evening, everyone's bathroom habits vary widely, and some of us are VERY particular about where and when we'll use the bathroom. One of the biggest things that I was angry about after our disastrous date-night, was the fact that my husband had the nerve at one point, to say, "Why didn't you just use the bathroom on the bus on the way down?!" - this is a man that's known me over 20 years. He knows how I feel about public restrooms- and he SHOULD have kept that in mind.
Don't give up on doing fun things entirely - you can still probably do ANY of the things you've ever wanted to do, even if you have to take MORE time to do them, or to make special accommodations in order to be able to enjoy them. After all - I will go back to NY. I will even go back by bus and meet him there another time - but next time, I'm not going anywhere without my wheelchair, and he better be there when I get there (or have a cab waiting to meet me!) You may not be able to handle going to the renaissance fair in August when it's a hundred degrees out - but maybe you CAN enjoy it in October when the weather is cooler and more comfortable. More importantly than anything - if part of your special plans involves something that you're going to enjoy MORE than the person who's putting their entire body - their energy, their pain levels, etc all on the line for you - please be sure to go above and beyond. Make sure you take into account every possible outcome - that you plan for delays, that you look into schedules, the routes you'll take, the weather, the traffic - and that you make sure accommodations are possible that will make all of these things navigable for your loved one.
Last night, I took a bus to NY to see a show that my husband really wanted to see - and he didn't plan ahead for just how badly our night would be ruined by having me wait around, alone, for a long time (in the cold), and then having to walk a long distance (and a lot of stairs) just to get to a bathroom - and our night ended in total disaster. I felt bad that he didn't get to see the show that he wanted to see - but maybe - just maybe - next time he'll show up with flowers and a cab, instead of running forty minutes late and expecting me to hike all over the city to get where we needed to go. I really hope we get to spend some time together doing something for just the two of us again soon - but I also hope that we never have another night like last night - because it was pretty awful, and if it had been at the BEGINNING of our relationship rather than five years in - a night that disastrous could have easily been a lot more than just a bad memory and a few days of recovering physically.
Best of luck on your future dates and having a good time with your friends and significant others. If you keep a person's needs in the forefront of your mind, you'll never go wrong. The best foundation for a relationship is knowing that the other person really cares about you and what will make you happy - so keeping in mind how to make their life easier and more enjoyable (and less painful!) - it's always going to be appreciated and make for a better relationship.
Despite our night being a disaster, things turned out okay.
Despite our awful night - and a long time of sitting at the McDonalds (waiting and hoping my meds would kick in and allow me to be in a little less pain - no such luck) - eventually my husband went and got me a much more comforable pair of shoes, and some food, and called a cab. We took that back to Queens, where his truck was, and then we took the long (very painful) drive home. I've been recovering at home all day. :-(
Thank you for taking moment to read my thoughts from tonight.... I know chronic pain isn't fun to think about, but I ask that you take just a moment to hear a few thoughts.
I hope that if you're suffering with chronic pain, that this blog will help you share how you are feeling with those that don't understand. And if you don't have live in pain, that this may open your eyes to a situation you didn't know existed.
Your comments are welcome & encouraged.
Do you know what living with chronic pain is like?
I have to ask - have you ever woken up from the pain of your hip having been dislocated for hours? Has the weight of carrying a magazine or holding a package of markers ever dislocated your wrist? Have you ever been so exhausted by taking a shower that you spent the rest of the day recovering? Have you ever had to stop in the middle of signing your name because your fingers dislocated from the pressure of the pen? Have you ever taken a step only to hear a sickening snap, unsure if something broke this time - or if its just 'out again'? Chronic pain isn't a competition - maybe you live with migraines or have suffered from a serious car accident. Regardless of the cause - living with pain that doesn't go away is more than most people can wrap their minds around.
Chronic Pain and how we're treated by Medical "Professionals"...
I want to talk for a moment about how chronic pain is TREATED and how badly those of us who seek treatment are treated by medical staff. I would like to talk about how you can go into any doctor's office and you have 100% of the staff's attention and concern until you mention ONE thing - that PAIN that just won't go away.
Let me be clear - I have never been diagnosed nor have I been suspected of suffering from mental illness. I was a police officer (back in my health) who had a respectable career which was never marred or disgraced. I've never been arrested, never been in any real trouble of any kind, and I have never abused or misused prescription medications - my experience with "partying" was limited to trying marijuana a handful of times at 20 years old when I worked at the Renaissance Faire. I knew early on that I wanted to work in law enforcement, and I took that seriously. And even though years later, I take powerful opiate medication EVERY day - I have to be clear: I am no more addicted to the pain medication that I am DEPENDANT upon than a diabetic is "addicted" to the insulin they take.
People like myself, living with severe chronic pain KNOW that you emergency room nurses, ER doctors and our own family physicians are so cynical and burnt out that by default you don't believe ANYONE who leads off complaining of pain. We've been talked to like the scum of the earth while writhing with pain worse than you've likely ever experienced. Short of major surgery, days of undiagnosed appendicitis or a compound fracture - it's not likely you've ever had to answer questions while unable to complete your thoughts because of pain.
We see the looks you give us from behind the pharmacy counter - the suspicion, the disgust. We hear your whispers from beyond the curtain. We've heard it from our own family members or friends, not to mention every medical staff member who's asked what medications we take. If, god forbid, someone HAS prescribed any controlled substance, that questions is immediately followed by a disbelieving "but WHY?". AT the first mention of ANY opioid (unless we're also dying of cancer) the suspicion abounds and our treatment immediately disintegrates. We're treated as if we're criminals, addicts, common junkies... and we hear you. We see you. And we'd like to know- what would YOUR solution be to the pain we live with? For whom do you think these medications were created? How exactly would YOU do it better and would you be willing to take our pain for 30, 90, 365 days in order to prove how you could handle it with just ice packs and ibuprophen?
My Pain Management.
Yes. I do take morphine. Every day - for five years, once a month, I drag myself out of the house regardless of how I feel to sit through an appointment that can last up to five hours. I'm subjected to a urine test monthly - to make sure I'm taking the prescribed medication and not selling it. They also make sure I'm not taking anything they haven't prescribed. And I have to PAY for the indignity of not being trusted - did you know that?
Sure; The bottle says every 12 hours, but I'm human... occasionally I'm lucky enough to sleep too long, or I get mentally busy and I forget- and then I get to feel not only the pain. The pain that comes rolling in, in waves, but I also get to feel that distinctive sickness...I get to experience the SUDDEN, SHARP and repeated painful yawning (there goes my jaw, out again).... the ice cold sweat stinging my eyes, the nausea, the dizziness, and quickly my mind can't focus (even on the pain). My palms sweat... and that's just the beginning. But thank god I have another pill to take- and in fifteen to thirty minutes both the WORST of the pain and that awful illness will fade... that's what I remind myself each time I'm overdue for a dose. At least I have the option to take a pill and it will fade.
But without that monthly appointment, and without that pill, I'm reminded, in excruciating detail- of every movement I've made in the last ten days. I'm reminded of just how many fingers, which wrist, knee and how many ribs I've dislocated and subluxated and, of course, which hip has spent more time *out* of its socket than where it belongs. Don't get me wrong - I'll still feel all of that once the pill kicks in, just a little less clearly (thankfully). It never actually goes away.
We aren't all so "lucky".
For hundreds of thousands of others like myself - those who have yet to be diagnosed, those who have yet to be believed, those who have yet to find a doctor willing to prescribe them any kind of long term or extended, slow-release or powerful enough pain medication... for them the relief never comes. They get to feel ALL of it, ALL of the time.
Thousands of people living with the same pain that I face , will make a heartbreaking and permanent choice - often the only choice they feel they have left: many of them end their lives. I even, sadly, can understand why they make that choice.
These people aren't dying from losing the fight with depression. They aren't overdosing because they lost the handle on an addiction. Please, take my word for it- living with this constant chronic 10/10 pain, in which EVERY movement you make, every breath you take, is met with excruciating pain... there are only two choices- PROPER pain management or death. There is no in between- no one is designed to live in devastating pain. And when you have NO options for controlling the pain - people resort to things you never think they would. Honest, law-abiding people will inject themselves with sketchy heroin just to get a brief break from the pain - and sometimes those people overdose and die, and then their family learns that they overdosed, and people are blaming this horrible situation on the DRUGS and not the REAL PROBLEM: Chronic pain that is being IGNORED by the entire medical industry!
I know that despite the Ehlers Danlos Syndrome, I am so very lucky. I am EXTREMELY fortunate to live in a place where I have help watching my son, where I'm covered by insurance that pays for most of my medical care and medications. I know how lucky I am to have an incredible husband who fought for me and advocated for me and who attended SO MANY awful hospital stays and doctors appointments with me until we found the right team of doctors. But even with a rheumatologist, a gi, an endocrinologist, an orthopedist, an allergist, a dermatologist, a uro-gynocologist, and an oral surgeon who specializes in EDS (and pulled ALL my disintegrating teeth thanks to the EDS) plus a fantastic general practice doctor... it was only ONE specialist, after three years who was willing to write scripts that would eventually get me out of bed and keep me out of the constant rotation of hospitals - by prescribing the powerful long acting opiate pain medication that I've taken every day for five years. But I can't tell you what I might have chosen if I hadn't finally gotten relief through LEGAL and WELL REGULATED medication - it could have been heroin - it could have been suicide.
I remember, each time I'm late taking a dose, each time my pain is still a 10 and I can't take anything more medication for hours for the breakthrough pain... I try to focus on the hundreds of thousands of people who DON'T have that one amazing doctor, or that incredible husband to advocate when they were too weak or too depressed and in too much pain to make just one more phone call, or to go to just one more appointment - Many people can't stomach one more visit with a doctor where they can expect to be treated like a junkie looking for a fix rather than a patient in PAIN. I know how lucky I am.
What do you do when you can't get anyone to help?
People like myself live with pain that makes you break out in a cold sweat, the kind of pain that you can not experience without squeezing your eyes (filled with tears) closed and focusing on your next breathe, a pain that is SO searing, so hot, so electrifying that you can't sleep for days at a time...giving rise to the term "painsomnia"... and there are *millions* of us living with this unending pain, and the *LUCKY* ones have access to medication that only *sometimes* helps.
The pain NEVER fully goes away - even when we're laughing, or eating our favorite food or celebrating our birthday or a promotion or doing something unusually active (that we'll no doubt pay for later)... the pain is still, EASILY, the number one thing on our mind, no matter how hard we try to focus on whatever BETTER might be going on.
And on our bad days? If you don't live with one of us, you've likely never seen or heard from us during the bad days. When we're sick or sad or heartbroken or swimming in one disaster after another...our pain just AMPLIFIES anything bad and makes it THAT. MUCH. WORSE. It's not a mystery why people with chronic pain are ending their lives in STAGGERING numbers, or why people are turning to street drugs when their pleas for relief from the pain have been ignored for months or years on end.
Having a "good day" can be the worst thing -because we tend to over-do it. We want to cram in everything we haven't been able to do in the last few weeks, or months, because hell, we never know when -or if- we'll ever get another "good day". And worse than overdoing it, and paying by needing days of recovery for a simple day of running errands - is the immediate judgement when we're seen out and about - god forbid we are laughing or smiling - because then it's assumed we are ALWAYS fine and that the other 99.9% of our life is a great big lie. How do you think that feels - to be told that we aren't EVER allowed to look or act well, because while sure, our friends and family want us to participate in our own lives... as soon as we do, it's assumed that we should ALWAYS be able to. It's a horrible, horrible Catch-22.
In reality, chronic pain and chronic illness doesn't conveniently disappear when the weather is nice, when we're starving and need to get groceries, on our wedding day or when the baby cries and the dog needs to go out... it doesn't turn off during that one day we have off from work this week, during the vacation we planned months in advance, or on the afternoon our spouse is both off from work AND "in the mood"... it doesn't give us the evening off on the evening of the concert you got tickets to AND found a babysitter for. It's ALWAYS there. And PATIENTS with chronic pain and chronic illness don't go away just because the hospital discharges them, the ER sends them out the door, or their doctor's office says "sorry, we can't or won't prescribe you medication that can help you."
Severe chronic pain is all-encompassing & it doesn't give you a break, ESPECIALLY not when you need a break the most. As a matter of fact, those are the times when the pain is at it's worst.
And we aren't supposed to talk about it either.
We try not to talk about it for fear of being a constant bummer - we are often downright in FEAR of the moment a doctor asks for a number to describe our pain. Do we downplay it so they don't think we're exaggerating? Do we tell the truth and risk that they assume we're hypochondriacs or just jonesing for a fix? They don't see that we turn down attending FAR more fun events than we attend or have missed so much work that our job is in danger and when we were absent and we say "I had a bad day" or "I wasn't feeling well" it WASN'T just like last week when you had the sniffles and stayed home from the office with a good book and a hot tea. When we are brave enough to tell a doctor that our pain is a 10 - it has probably BEEN a 10 for a very long time. And sadly - we're probably EXPECTING an eye-roll in response.
If you work in the medical profession I have ONE request... (PLEASE understand - I know that you work in a VERY demanding and difficult line of work. I do realize how much pressure is on you NOT to treat our pain.)
But PLEASE... Please take a moment with each and every patient to remember, for a moment, that not everyone who tells you they are in pain is just looking to get high.
1) Speaking for all of us in constant pain - I beg of you: PLEASE don't immediately judge us. Please don't assume that because we are crying too much, or not enough - because we are preoccupied on our phone or curled into a ball - please know that we all cope differently and just because we aren't sobbing and begging, it doesn't mean that we don't want to.
Please don't leap to the conclusion that no one is *really* in pain. For many of us, it took 200% of our effort just to drag clothes onto our bodies and to get to this appointment or into your ER in the first place. At least listen to us. Please talk to our close family members, take a complete medical history, really LOOK at the big picture. Please don't just tune out the moment that you hear that we're in pain.
And for those of you who don't work in the medical profession : perhaps you have a friend or family member suffering. Please try to remember that we didn't ask for this pain. We don't deserve to be treated like addicts, like people who make poor choices or who take "drugs" for fun. If we're lucky enough to HAVE access to pain medication, and we're taking it responsibly - please don't judge us. And if you're concerned, TALK to us, not about us.
Now if you'll excuse me, I have to put my wrist back in and tape it there before the swelling gets any worse- typing this really did a number on me. I'm about nine hours from my next dose, so I suppose I won't be sleeping again tonight... the chest pains from my out of place ribs feel very much like a heart attack... but I'm going to try some meditation and to lie in the dark and hope I can will away the throbbing that started from dislocating my left wrist that happened from holding my cell phone while I tapped this blog post out on it.
I hope you'll rest well tonight. Please keep those who can't rest because of chronic pain in your thoughts.
We really DON'T want your sympathy. We just want to be treated with respect and understanding.
Please try to be a good friend to the person you know who battles chronic illness
The following are some suggestions on ways that you can be a good friend to someone who is struggling or coping with adjusting to life with a disability. Your friendship is more important now than ever. Being chronically ill can make you feel isolated, depressed and some people with severe chronic pain consider suicide. You never know how much of an impact even the smallest gestures can make when you are doing something nice for someone who is dealing with the difficulty of living with chronic illness. Your words and actions can provide everything from emotional support to reduction of symptoms - just by being a good friend.
1) Even if you know there's a good chance they can't make it, please remember to invite the chronically ill friend in your life to events, parties, and one-one-one outings.
Everything from large events and parties, to the occasional social outing for coffee. When a person never knows how they are going to feel from day to day, it can be common to cancel plans at the last minute or turn down lots of offers, and sadly, as a result, many friends stop inviting the friend to do anything at all. Unlike a flakey friend who always cancels last minute or blows you off when a better offer comes along - your chronically ill friend probably doesn't WANT to cancel plans, but has to for one reason or another. Please try not to take it personally when someone with chronic illness has to cancel - and please don't use it as an excuse to stop inviting them at all - it's very easy for friends to just stop inviting you after you've had to turn down or back out of plans. Please try to remember that just getting showered, dressed and leaving the house takes a GREAT deal of effort - so try not to call us up last minute and then get frustrated when it takes an hour or more for us to get ourselves ready. Just please don't stop inviting us to things- even if we've turned you down multiple times in the past. Cultivating and keeping friends is difficult when you're battling chronic illness- a little patience and understanding goes a LONG way.
2) Please try to set aside special time to invite us to do something that you know we CAN do.
Ask if they mind if you drop in just to chat, or invite us to come to your house (for a change of scenery) just to have a cup of hot chocolate. Invite us to go get our nails done together, or another passive activity that doesn't involve tons of movement, standing, walking,etc. While there are some days that we could handle a trip to the mall or even an amusement park - please try to invite us to do things we're almost ALWAYS capable of doing. It would mean VERY much to us that you care enough to plan something special - it shows that you care about us as a person and value our friendship.
3) Feel free to ask questions about our illness or current symptoms - talking about it often helps.
We don't want to feel like Debbie-Downer by bringing up our current problems or the struggles we've been facing, but when you ask, it shows that you CARE and you aren't afraid to be a friend with everything isn't all sunshine and flowers. The best thing you can do is to be a good listener WITHOUT trying to offer us medical advice. Please know that while you mean well - we have a whole team of specialist doctors, many of us regularly see a chiropractor, the health food store and a plethora of other professionals, and we've heard ALL the suggestions before. And whatever you do - try not to bring up the suggestion that "loosing weight might help you feel better" - those of us dealing with chronic illness are well aware that extra weight doesn't help, but most of us are also making a valiant effort not to continue to gain weight or hold onto those extra pounds - sometimes the medications we take have a side effect of weight gain, and there's simply nothing more we can do. Please remember that while we may be very frustrated about a particular health issue at hand, most of us would rather talk about our hobbies and interests, our families and what's going on in the world. If we're wearing a brace or on crutches, feel free to ask "How is your wrist doing?" - we like to know that you care and I promise, we won't go into a tremendously long timeline of our recent ailments just because you acknowledge something that's obviously a current issue.
4) Please try NOT to push us to participate in things you KNOW we can't do - if your circle of friends is going sky-diving, you can certainly bring up the topic, but don't try to push us to do things that we don't feel up to doing.On this same note - if we've politely declined because we aren't physically up to tagging along, try to find a way to include us after the fact. You can always bring pictures from the crazy drunken midnight ghost-tour or that sky-diving trip and tell us all about how it went -it will help us feel a little less left-out. Or, if we can't participate in something incredibly phsyical-maybe we'd like to come along to take pictures. You can sometimes find a way to include us without putting us at risk for further injury.
5) Remember that small gestures go a LONG way - Maybe we haven't felt up to leaving the house in weeks, but you could always offer to come over with a home-cooked meal (or take-out) and a red-box rental to have a night-in. Remember, during those long periods of time when we are home-bound - it gets incredibly boring and lonely to be stuck at home all the time - Any offer to spend time with us means so much, even if it's just dropping by and insisting that we can stay in bed in our jammies and you're content to just "hang out". True friends don't need to "DO" things together all the time - sometimes just having another person to talk to (rather than text messaging or chatting online) is enough to bring us out of a really bad mood.
6) If your friend is going through a REALLY rough time (symptoms that are being terribly persistent - chronic pain that's become really bad, or depression / anxiety resulting from their inability to do much of anything at that point and time) - remember that even the SMALLEST gesture counts; A quick phone call to ask how she's feeling, a Facebook message on her wall just to let her know you miss her, a text-message chat checking in on her - it's a little thing that can go a LONG way. Emotional boosts are KNOWN to translate into improved physical symptoms - so remember that even the smallest show of love and support can make a world of difference to a friend who is trapped inside a body that isn't cooperating.
7) Bring a gift - it doesn't have to be anything expensive or elaborate: a couple of home-baked brownies, a container of your mom's home-made chicken noodle soup, a pretty candle or a good book you've already read three times- everyone loves a gift, and make sure your friend knows that you don't expect anything in return.
8) Bring them food- it becomes really easy to live off of microwave meals or skip entire days when you're not up to standing in the kitchen and cooking. If you've made a big dinner and have leftovers- why not offer to stop by your sick friend's house with a single-portion so they can re-heat it for lunch when no one is home and they aren't up to making something for them-self!
9) Just outright ask: Is there anything I can do for you today that would make your life a little easier?
You could offer to walk their dog or to take their kid(s) to the playground for a few hours. You can drop by with a small bunch of flowers, or ask if you can throw a load of laundry in the wash for your
friend. Maybe that sink full of dishes could be put in the dishwasher or you could offer to carry their trash outside to the can?
It doesn't have to be a GRAND gesture-and no one is suggesting you offer yourself up for a full day of house-cleaning (although if your friend has recently had surgery, this could be an AWESOME group project for your circle of friends to offer!) - sometimes your sick friend is internally stressing out about the fact that it's trash night and she's simply not up to carrying that kitchen trash bag to the curb... so your offer to help with such a small chore (Even on your way out - "Hey, I'm heading out now, would you like me to take your kitchen trash bag out with me, or did anyone bring your mail in today?") -these types of offers can be so minor, but yet such a big deal to someone who is having trouble staying on top of their household chores. You just have no idea how such a simple offer can really ease the mind of someone who is feeling trapped on the couch by unrelenting symptoms.
10) My last suggestion is my favorite - because there's not a single person I can think of who wouldn't appreciate this type of gesture. It doesn't have to cost you anything, but it can make a world of difference to your friend:
Pack a mobile "wellness kit" - include a snack you know your friend enjoys (and can eat) - take along a movie (preferably something funny or that you've already seen a million times and know you'll both enjoy) and have an old-school "sleepover" style get together. Bring a hairbrush, and nail polish - give your friend a mini-manicure or paint her nails with cute designs. Do you give a good back or neck rub? If not- bring along a microwave-style heating pad, and offer it up for the persons neck and shoulders. You could offer to run a brush through your friend's hair and try a new style - a simple braid or even a pony tail or bun can make someone who is sick and really down feel like a whole new person. And who doesn't love the sensation of having someone else play with your hair? This type of mini-makeover can have lasting affects - not only do you let your friend know that you care, by planning something that doesn't require her to get up and do much of anything, but you're spending quality time, and when you leave, your friend might have really cute nails and a brain in her hair - leaving her feeling much better than she did when you arrived. There's not a person on this planet who doesn't enjoy the tingly sensation of having someone else brush their hair - a soft bristle brush is best. Or bring along a nice-scented hand lotion and give them a hand massage - this type of personal attention shows that you truly care, that you want to make them feel special and loved, and doesn't require any effort but for your sick friend to kick-back, relax and enjoy the special attention.
An old-school style sleepover- where you braid her hair, paint her fingernails and watch Clue for the 300th time can be JUST what the doctor ordered.
Do you have suggestions for what a friend could do for you to make you feel better when you're feeling bad, or have you done something special for a sick friend lately? Please share in the comments - we'd love to hear your ideas!
-------- WARNING: Discussing Heavy Shit At Bed-Time --------
I WILL BE UP BLOGGING ALL damn night.
For the record: Not a good idea. I was exhausted when I laid down at 9pm. I thought "we're all nice and calm, let me address something minor while were both in a fine mood and maybe we can come up with a solution."
NOPE. MY husband went to sleep looking like a kicked puppy,and I then stayed up, unable to sleep, thinking over everything we'd discussed and becoming more and more frustrated and less and less able to sleep.
When my husband awakes from his nearly 18 hours of slumber, he has to leave very early for work so I knew we wouldn't have much time to chat, so...We tried to chat before bed -namely about how my husband and I love each other deeply, but don't "get" how the other thinks...and how it seems to leave our communication a blurry mess with a lot of misunderstandings.
In bringing this up, all I did was royally hurt his feelings....Ten minutes later, he's falling asleep
as if nothing happened, yet I'm in tears and I'm so upset that I can't sleep at all.
I realize despite taking 2-2mg alprazolam (aka Xanex 4gm)- but now the sun is up, and I started thinking, then I began writing (A solid nine hours ago) but I quickly realized I was finding far more questions than answers....
------- My Dysfunctional Part in all This ---------
As my husband is half asleep (It was only 8:30 PM when this discussion started, in all fairness, it's not as if I was trying to start this chat at 4am.) I get that he had a long day, but the reality is, so did I.
I was trying to explain how differently we think... And how, while we have a wonderful bond and a solid relationship,we definitely have certain times that we simply don't understate each other because our brains function in very different ways. As result, I want to dig a little deeper into how
my brain works, vs how my husband's brain works to help us understand each other better.
With the fundamental difference between my brain,(which has a High IQ - I have repeatedly been tested well above average, including exceeding a 1400 on my PSAT's in 7th grade and getting a near perfect score on the SAT's as a senior (1560 to be exact). Unfortunately, many people with high IQ's also have issues like ADD and ADHD, and I am definitely one of those people.
The main negative attributes that are brain-related (you could almost call it a flaw) that come along with ADHD (Attention-Deficit Hyperactivity Disorder) are symptoms such as I have a reduced ability to focus on one thought at a time, I have a very difficult time shutting my brain off when it's time to sleep, and when I am awake and alert, it's very difficult to stay on one collective topic of thoughts - I'll often forget what I was saying mid-sentence, or forget what TV show was on during the commercials. It takes a special person to live with and put up with me - I get that.
Some of the main issues of living with an ADHD brain is that it came be difficult to keep your focus on anything that doesn't particularly interest you, or especially if the person is overly tired.
As an example, while I am really interested in writing this article, it has taken me hours lo write due to the lack of focus, while I have a tendency to SPEED through mundane work,what with my inability to slow down and follow directions. I've heard that my ENTIRE LIFE. There's major issues with
concentration that comes along with ADHD, as well as some issues with impulsive behavior.
------- My Husband is Definitely from Mars ----------
So what are the differences between his brain and mine? Well, first of all, he has no trouble turning off when it's time to sleep. It endlessly frustrates me that he can sleep away entire days when he doesn't feel a pressing need to get up (IE - he doesn't have to work that day). He's late for everything, and has poor time management. Worse, he can't understand that I have trouble with many of these same issues because of my ADHD but rather than helping me, he tends to make things worse, and even worse than that, often applies the blame on me.
------ So we used Christmas as an Example, because it's always a hot-button issue around here. ----
I try all year to drop hints, to make it easy on him. I feel like I am a very easy person to shop for, I don't request or hope for outrageous things we can't afford, but I do sincerely wish for him to either ASK ME what I would like, or do a little thinking and researching rather than just taking the "easy" way out and shopping for me at the very last minute when he can't get 90% of the things I was hoping for. It's lead to several years in a row of disappointing Christmasses, Birthdays and Anniversaries.
...sometimes I flat out tell him what I want (which he hates)- But all the dropped hints fall on deaf ears and are as good as if I'd never spoken them. I'm REALLY easy to snoop around and figure out.
I have an amazon wish list pages deep, a Pinterest and dozens of Etsy favorites ( shops and items tagged) of everything from $2 items to $2000. It shouldn't take much to figure out a few small gifts I'd really find to be special. Receiving ANY of these items would shock and THRILL me on Valentine's, our anniversary, my birthday, or even Christmas. Sadly, we've gotten into the habit of not really giving each other gifts EXCEPT for Christmas, and that alone is depressing. As much as enjoy shopping, I really enjoy the occasional gift for no reason. Like when we go to the renaissance faire - not once has he bought me a rose. I've had literally hundreds of roses given to me at faires over the years, but never once from Justin. He just doesn't think that way.
I'm no diva and under $100 could go a long, long way.... In all our years together, I can honestly say he is the least emotional, least romantic and least thoughtful of the men I've dated in the GIFT giving department. (He's much more giving in an emotional, thoughtful, even sexual ways). But when it comes to buying presents... he pretty much stinks. :-(
I've gotten a craftsman multi-tool (that became useful a cop) and a tattoo certificate for Xmas from one Bf, another gave me a gun for our anniversary,and a motorcycle just to celebrate our tax returns, even my married gay bf got me ice cream gift certificates for cold stone card, but other than the occasional card, Justin isn't much of a present guy, and almost never for no reason unless it was a trash find. Sure, he brings home flowers left from weddings he works, but he'd bring them home to his mother, if he was still living at home with his folks. I am not fooled. Sorry honey.
---- He hates that I hate surprises ---
Truth is - I don't hate surprises. I hate the build up, the suspense.. and then being let down. Inevitably, I'm let down anytime someone says they are going to "surprise me". THAT is why I hate surprises so much.
Sadly - he gets FURIOUSLY angry that my Christmas Tradition started long, long ago-disappointment had reigned until I took over buying for myself a reasonable amount of things each year, with mom's credit card. She'd fork it over, I'd go spend a few hundred dollars - Don't get me wrong, I never went nuts, but I'd get some jeans, tops I liked, a neat trinket or two, and ta-da... I had a merry Christmas.
What it came down to was that I'm the eighth child, the last kid, and the only girl. Ten years
is the age gap between me and my brothers. I wasn't spoiled (on the holidays) - rather, I was all but entirely forgotten. So, since I was about ten, my mom (who loathed shopping anyway) would give me her card, I'd spend a few hundred bucks and boom -Christmas DONE-
I'd wrap my own gifts and call it a night. I'd always hated surprises anyway, and for years, relatives who couldn't remember my age had dumped dollar store "Barbie-knock-offs" and I got weird, hideous clothes often far too big, or other things I just generally couldn't use or didn't like (not because I'm picky or snobby, but because the person buying it put LESS than ZERO effort into their gift). I've always tried to be thoughtful of the person and mindful of what they'd really truly LIKE and USE...
As a little girl every year, l clearly wrote outs a list- no unicorns and "million dollar wishes" each year, but even so, I'd never get anything I'd ask for or want; All I wanted was some legos, maybe a new soccer ball, simple things, but those requests always ended up COMPLETELY IGNORED. And so I gave up on surprises and expectations and hopes, and just bought myself whatever it was that I wanted, while feeling guilt-free because then I could honestly ask people NOT give me gifts because I didn't need or want them, it made everything much more simple!
So I'd spent nearly my WHOLE life disappointed by the feeble attempts of people who never really cared what would make me happy, and nearly every gift I've ever been given by my family was so far from my tastes, eight sizes off, or simply something I would SWEAR was some re-gift of an item they had lying around that they KNEW I wouldn't need or want, but they'd wrap it up anyway. Depressing. My grandmother would always sneak each grand-kid $100- and every year my mom made me return all but $10 of it, claiming each of my cousins did the same. Come to find out years later - that was a bold faced lie! My aunts never made their kids fork over their Christmas money, just me!
So, starting then, and through today, I flat out choose my own gifts... I've learned to LOVE IT.
And then, in stark contrast, there's my husband, Justin: He LOATHES it...
...It's been three Craptastic-Christmases - (each one has resulted in someone in his family butt-hurt and angry for weeks, usually with Justin and I driving home yelling at each other,all while trying to keep quiet enough for the baby (he's three!) to sleep on the way home. I can't stand the family drama and ridiculous bickering the holidays bring out in families - Last year it was because I asked them to delete a particularly gross and unflattering photo of me, which apparently set off a temper that in turn, caused the photo sessions to end. Yay me, for screwing everything up for everyone!!
---- The Good Old Days ---
As a cop I was *NEVER* shocked by the spike in suicides...."Merry f'n holidays," we used to taunt each other as one shift would head out, while others went 10-8! "Jingle Bells, Corpses Smell, Brain Matter splatters Walls. Oh what fun, the shot gun's done, grey matter's on the walls, Hey!"
-- He tries, but... ---
Sigh. While he TRIES to put forth slightly more effort each year its hard to be upset with him but he really has stunk at gift-giving. Plus, he AND his family (who insist on buying me non-refundable clothing that is nowhere near my style or size).....Sigh. So I smile, nod, toss everything in a pile until my mom hauls it out to get picked and donated. That sucks. I don't like seeing people waste their money on me, I'd rather just not get a gift at all, you know?
Last year, I'd scrimped and saved and bought his gifts as far back as eight months. (On record, he's STILL never used the $300 in Broadway tickets I got him, agreeing to attend ANY SHOW, not a small feat for me and my low tolerance for crap I dislike.) Seriously, they are now three years old, I don't know if they are even any good or if he even knows where they are. How depressing. (and he's upset that I "beat him" to buying a picture frame I didn't even really care about? sigh.
Last year, for example, I laid off, but as Christmas approached I'd realized he hadn't bought me anything just five days before Christmas except the lego sets I'd bought and told him to go ahead and wrap for me. And then tonight I accidentally insulted a Christmas gift he'd *almost* gotten me last year (it turned out to be one of those "Gift of the Magi" type situations, sort of) -anyway in Nov 2013, I'd run across my Red Sox world series photo print (8x10") from 2004 and decided to put it somewhere safe.
But not long before last Christmas, while doing some thrift shopping, id found a funky CHEAP piece of art (the three wise men actually), in shiny 3D, set in a bad-ass gold sparkly frame- so i picked it out, eventually at home, ripped out the ugly art a few weeks before Xmas, glued in my Red Sox photo and hung up my work in our bedroom. Turns out, Justin was upset to see it....he had been planning to kidnap the photo and was thinking of having it framed for me.
I was like.... "what?" I mean, I love the Red Sox.. but this is just a photo that's been floating around since 2004. It wasn't anything I particularly prized, and he was very weirdly upset that I'd gone ahead and framed the photo before he got the chance.While it would have been a somewhat thoughtful idea - having the photo framed was NEVER high on my priory list.. It's a little creased, bought offline for $8, a reproduction, not signed and of no value except that I Iove the Sox. He didn't plan to have it signed or anything...just framed, to wrap as if it would shock and delight me as the highlight of my entire holiday. That's what I mean by "he doesn't get me."
Also, some things are nice gestures if you bring them home on a Tuesday in March, but make weird / creepy and even insulting Christmas gifts: Imagine my heartbreak when my stocking was filled with acne creams, buffers, lotions and worse, he'd clearly had them laying around for years. I was crushed... I was ALREADY feeling ugly...depressed and unwanted. I cried IN MY ROOM while everyone ate breakfast. He didn't know. I managed a "thanks" but it really bothered me.
--- And it's not just about Christmas gifts and such... ---
He simply doesn't understand my priorities, what I want in life, what I care about and what I feel like I really REALLY need. So, here he is hurt over this present that never even happened because I found a cheap frame first.....and I'm sad because the consignment sale check I'd worked my ASS OFF FOR...that thought we'd set aside for passports for my tubal reversal trip .....were apparently *blown* without my knowing.... He STILL hasn't filed our taxes even though that return is the ONLY HOPE OF GETTING TO MEXICO FOR MY TUBAL REVERSAL, and that I've made it quite clear if I'm not on hormone injections and trying for a baby come April, I'm giving up and were done, despite how very badly we've really wanted to have a second baby.
No wedding. We never had one, and just as I predicted - we never will, and he doesn't care. He worked a wedding the other night in the location we'd chose and posted about in on Facebook, tagging a friend saying "haven't been here since your wedding"- but not a single text to me saying how sad he is he wishes it could be us there. Hell, All five of my $10 and under engagement rings have gone in the trash after tarnishing or losing stones. It really makes a girl feel so VERY special when in THREE YEARS of marriage, HER HUSBAND hasn't found it a priority to tuck $5 here and $10 there so that maybe someday I could get a REAL RING.
I feel so insecure and unhappy that none of this seems to get through to him...that he doesnt understand how important ANY of this is to me;
1) Sometimes I feel like he married me out of pity because I was scared, pregnant and alone- just like his "best friend" pretty much accused him of doing a mere ten feet from the hospital bed where I laid with my newborn son, Adam whispered that Justin was "about to ruin his ENTIRE life" (and *yes*, I heard you, Adam.). Of course, that became a major bone of contention because I didn't want the best man at my wedding to be someone who doesn't even believe the groom should be marrying the bride, nor do I even want this guy AT my wedding since he's STILL never bothered to apologize for trying to take Justin into leaving me and not "ruining his life".
2) Because we had to marry to complete the adoption, it certainly feels like no one would actually care if and when we had a REAL wedding...
... And here three years later, my dress doesn't fit, and not once has he or anyone in his family expressed a single thought about us actually HAVING a wedding, so by now, I've accepted that this will never happen. All I wanted was for ONE thing to go "according to plan". I don't know a single other person who "eloped' or got married at the courthouse and did NOTHING for their wedding including not getting wedding rings. It's so depressing. I feel like a HUGE thing I should have gotten to do was just totally forgotten about forever.
3) And because no one cares about the wedding, it's clear he doesn't care that I have never had an engagement ring, let alone a wedding band. Sure, he got me a pretty (but completely inexpensive) ring for a placeholder, but he didn't make any effort in the three years since, to find me a ring - so to this day, I have no engagement ring and no wedding band. It's embarrassing. By now, I realize how irresponsible he is with money, and I realize that saving for or somehow borrowing for it simply isn't going to happen and at this point, I'm supposed to be okay that my name hasn't changed, and the most expensive ring I wear cost $4 from a yard sale. He was making upwards of 70k when we married. I knew he had school loans and credit card debt and a car to pay off (it's long since been.) but clearly giving me an engagement ring that didn't come from the hospital gift shop just isn't ANY priority. It's hard to feel important and valued when he doesn't even seem to notice just how much it eats at me that this is of NO importance to him.
And my husband....True- I'd never flat out said how important a real ring means to me, after all, he'd married me, fought the legal war and won, and adopted our son, and I felt I owed him everything and deserved nothing....
AFTER ALL... HIS OWN BEST FRIEND CALLED ME AND THE BABY "A COLOSSAL MISTAKE" just hours after giving birth. I have a hard time with the fact that Justin's (then) best friend, Adam had no problem coming to my labor and delivery room, and warned Justin, in FULL EAR-SHOT of me, less than three hours after giving birth, that by Justin taking on me and the baby as his own, he was "throwing his entire life away" and right then- essentially disowned him shortly after.
(Think I'm exaggerating?) The "gift" his friend Adam and his wife sent us for the baby was a book entitled (more or less) "Parenting the difficult and disobedient child." I guess that was their way of saying that I'm going to be a terrible mother and we'll raise a moronic monster. He and his wife had a child over a year ago now- we have received no invitation to visit (and drop that book back off to them for their son, Lmfao! I mean, wasn't that so sweet and thoughtful a gift in the first place from his best friend and his wife...Screw it, let them have it back and see how they feel about someone presuming their child will turn out to be a monster!)
(DON'T GET ME WRONG; No one told my husband how I had longed for a real proposal- the kind you share on Facebook with a close up of the ring .... I didn't want a flash mob, or anything ridiculous....but his original proposal to me was private, in bed actually, but I bawled like a baby... Hell, I was shocked anyone wanted ME, my baggage, our beautiful son (but a child neither of us had ever wanted to begin with)- i had been waiting for him to take Adam's Advice, wise up and leave us...)
I just remember going out to dinner days after we got engaged - we went to IHOP for father's day and everyone in his family was going on and on and wanted me to show off the ring... but I couldn't show them the ring... because just three days after giving it to me, almost all the shiny silver had worn off, andmy finger was deep green plus one of the stones was missing already.
I really don't mean to come across like a brat... but I just would really like my life to start having some things go right, and for Justin to understand how important this stuff is to me. I don't want a $10,000 ring, or a $60,000 wedding. But I do want a real ring, and I do want a wedding. I want the tubal reversal done before I'm too old and it's too late and too dangerous. I'm just sad that he doesn't seem to understand how much these things bother me.
Just like the Christmas gifts he can never seem to get the knack for. I just can't help but feeling like I'm never going to get the surgery paid for and done, a ring, the dress and the wedding if I don't find a way to do it all myself - and then what's the point? I just wish he could figure out how important this stuff is to me, and that he actually cared. :-(
I was 29 years old when I became pregnant - the specifics of the situation are a story for another time, but at that time, I was, by all accounts, a fairly healthy and very active person. I was a police officer, I raced BMX on the weekends, I rode a motorcycle regularly and went horseback riding every Sunday morning. I had a lot of "little accidents" and bruised easily plus I suffered with an unusually weak immune system, and I had lots of small things that seemed odd for someone my age - but I never would have dreamed that I would one day be completely disabled because of something I'd had all along.
It wouldn't be fair to say that being pregnant CAUSED me to become disabled, but had I not become pregnant, it's impossible to know if i would have ever been seriously affected by the Ehlers-Danlos Syndrome, especially to the extent that I am now. I may have gone through life just being sick more than the average person, being unable to tolerate the heat, and having an unusual number of "little issues" here and there with my health.
I didn't want to have a baby- I had never wanted kids, but all of that is an entirely separate story. Regardless, by the time I was nine months pregnant, my best friend was doing the best he good to take care of me as the swelling (of my legs and feet) had gotten so bad I could barely walk and all I wanted was the baby O-U-T. When we had gone to the hospital to have the baby, my birth plan was a scheduled c-section but my baby plan was open ended... I was fairly sure my son would be headed to an adoption agency as my life-plan had never included children and I had no intention of being a single parent.
During my pregnancy, I had moved to my home state of NJ to be with family - and with my best friend who I came home every other month or so to see during the ten years I'd lived in Florida. How we didn't know that we'd one day end up married neither of us can figure out in retrospect... and even though we never technically dated (about a week before our son's birth we discussed that by entering a relationship we were basically acknowledging that we were planning to get married - hell, hadn't what we'd been doing all that time we'd spent together over 14 years essentially been dating without the kissing and whatnot? Anyway, he is Kaedin's father, and he had been his daddy since our son was the size of a lima-bean growing in my belly even if we didn't actually know we'd choose in the end to become his parents.
Justin also had never wanted kids, I was dead-set against them, and despite our being the best friends for fourteen years, it wasn't until I moved home pregnant and in crisis that we fell in love... right there between the morning sickness and my ever-expanding mid-section, somehow it happened. The first time he told me that he thought I was beautiful was a slightly sideways comment about how pregnant women can be really beautiful. I got what he was throwing out there... neither of us had ever been the mushy type - after all, we had been platonic besties for over a decade, but somehow it worked.
And as it turned out, he is the most amazing father in the world - like I said, he was, even before we knew we'd be parenting the little munchkin. He was incredibly supportive, from foot rubs and staying up all night with me when I was feeling really awful to emotionally supporting me through the entire crisis that had caused the pregnancy in the first place. But my amazing husband (he's my husband now, he wasn't yet then) isn't what this blog is about... this is all about how my pregnancy caused me to become disabled.
Despite his best effort to keep me smiling and get me comfortable, even all of the foot-rubs, and back-rubs (Not to mention and how amazing to go from scared, alone and pregnant to having the most wonderful man in the world supporting you through a rough pregnancy ALL all the emotional trauma to boot), I was still getting more and more uncomfortable.
He would hold his hand on my ever-expanding belly to feel those insane kicks (and the hiccups my son had for almost an entire month before he was born!) and it was truly amazing to know how loved we both were - but still, I was in a LOT of pain by the time the 9-month mark rolled around. I hadn't gained much weight throughout the entire pregnancy (in retrospect, thank god for that!) - but all the sudden at eight months, it looked like I'd swallowed a basketball.
Due to the traumatic nature of my pregnancy, sadly, there are few pictures the documented the journey, so you'll have to take my word for it, but at seven months along, I was still getting the side-eye whenever I'd park in the "expectant mothers" spot, and yet less than a month later, right around Christmas, everyone (including myself) was quite positive I would burst at any moment, possibly with twins! So when the day finally came (and yes, we made the decision to keep our son and bring him home while daddy was holding him in the middle of my tubal-ligation... the big emotional mess of a decision I'd made as a kick-back from the trauma of the pregnancy in the first place...) - I thought that all that back pain, leg pain, etc would finally end.
I went home on pain-killers - for about ten days after my c-section and during that time felt pretty great. Of course, much it it was probably the fact that I was now engaged and in love with both of my amazing men... I remarkably feeling well for someone who had just had a human being ripped from their abdomen and I was actually up walking around quite a bit just hours after our son was born.
I had remembered the horror stories from my sister in law who couldn't walk for days afterwards, but none of that was the case. In all reality - had my digestive system responded better to the dilaudid, I probably could have gone home that next day, but instead we got snowed in and spent six blissful days with nurses and catered meals and we all snuggled together and slept in my hospital bed. (It's a pretty weird way to start a marriage, by the way... his family was all "So... you're not coming home after work because you're at the hospital with your new baby.... um....)... but again, THAT is a whole other story. :-)
Our First Family Photo (1/24/11): I was crying. Right before this photo was taken, my then fiance brought the baby over for my first look and said to me, "I think we need a car seat." Until that point, we hadn't decided that we would be parenting vs. my placing the baby for adoption as I'd been planning through my pregnancy, so this picture is incredibly special to us. I was so incredibly blown away that my best friend had fallen in love with our son so completely before I'd even had a chance to lay eyes on him.
The problem wasn't my body wasn't the c-section or the recovery afterwards, what actually "upset" my faulty collagen had started long before the surgery as my body was moving through the stages of pregnancy and preparing for labor. All the low-back pain and hip problems I'd been writing off as pregnancy-related weren't actually -they were foreshadowing.
The problem began to show itself in the weeks after the birth when the low-back pain from the pregnancy (it had crept up right around the eighth month) had never gone away... by early summer it had gotten so bad I was at my GP asking for pain medication and MRI and x-rays. Disappointing and confused by "minor arthritic change" being the only notable thing, I couldn't understand why my pain was only getting worse. And spreading. It seemed like my knees, my ankles, my shoulders... one at a time, every joint in my body was starting to slip out of place, to sit funny - I'd dislocate a hip during sex (sorry for the TMI, but I promise, no one was more traumatized than we were!) - I'd step down a step only to find that my ankle had slipped out of place and end up in a heap on the ground.... something was very wrong and it wasn't related to my now months-gone pregnancy. By now my son was standing on his own, and I was becoming less and less able to stand on my own, even sitting up for long periods was excruciating. While he was having tummy time, all I could do was lay flat on my back on a heating pad, taking twice the recommended dosage of Advil and nothing was helping.
Finally, almost a year after my son's birth- after various referrals and two orthopedists who told me that nothing was horribly wrong with my back, I saw an orthopedist who was able to give me some REAL answers. (For the record, my husband had already come to the right conclusion) But for me, this was a real specialist, who I really trusted, who could explain what no one else had figured out: I have Ehlers-Danlos Sydrome, Type III. Otherwise known as Hyper Mobility Syndrome, it's a genetic condition that causes faulty collagen, which is otherwise known as the glue that holds us all together. So here I was, feeling as if I was coming apart at the seams... and I really WAS! As upsetting as it is to have a genetic disorder and no hope for a cure - everyone I know who has been diagnosed to this day is just glad that they finally have answers.
Being told that it's not real, that it's all in your head - it's demeaning, it's downright abusive. To have doctor after doctor treat you as if you are a head-case while your body is being racked with such severe pain that your quality of life is becoming non existent, you just don't understand what that's like until you're living it. I was just glad to have something I could go home and Google, to read about, to learn about, to learn to cope. The first stage of accepting this condition is knowing you have it - so at least I had that.
And for the record, I really have to thank my orthopedist Dr. Levy from Sprains Strains and Fractures in Cherry Hill, NJ because he's an amazing person and he really may well have saved my life, because up until the point where I started getting proper treatment for this incredibly painful condition, it was not looking good for me.
I spent the first few days after the diagnosis in tears- at first I was terrified I had Type 4 (Vascular EDS, which is often deadly) - I do not, I have type III. But still -this has no cure. It's a lifetime of pain. The dislocations will never go away, they will never stop - surgery won't help. This is a condition you manage and learn to live with - but it's not something that you can change because it's faulty genetics. And worse... I could have passed it to my son. But now you know the end of the story, and you didn't really find out HOW I went from being a healthy happy 130 lb police officer to a 185 lb disabled woman with a three year old son... so let me explain how pregnancy (and later, an inept moron of a doctor at Virtua Hospital in Voorhees) destroyed my body...
(but first let me say... even had I known that this would be the outcome... we wouldn't trade our son for the world.)
HOW PREGNANCY CAUSES EDS SYMPTOMS TO GO AWRY ...
The relaxin hormone floods a woman's body at the end of pregnancy to prepare her hips and pelvis for birth - unfortunately that hormone loosens up ALL your joints, not just your hips and pelvis. A healthy women's body will slowly tighten back up, and her lax joints from pregnancy hormones will slowly go back into their normal place after labor as the healthy collagen does it's job after the pregnancy is over.
Unfortunately, my defective collagen couldn't help my body go back to where everything belonged. The pregnancy set me up for a lifetime of joint dislocations each and every time I move, even ever-so-slightly, the wrong way. If I reach for something in front of my, my shoulder can drop out of the socket. When I roll over in my sleep, my hip often slides in and out of socket more times than you flip your pillow to get to the cool side.
Every joint in my body regularly dislocates, except oddly, my elbows, which seem to have remained free from the effects of my hyper-mobility. Everything else in my body is affected; my jaw broke during surgery to pull my wisdom teeth, my fingers dislocate from typing, writing with a pencil is physically painful, my wrists snap from picking up my cell phone to look at my text messages, toes slide out of socket and are so cramped and painful the only way to put them back in place is to get on my feet and apply pressure to them with my whole body to "re-set" them into place, my ankles drop if I try to run (that's a joke - trust me, there's no running going on here!), my knees dislocate from staying bent on an airplane or at a movie, and more than anything, my hips.
My hips are why I walk funny - they are why I'm in horrible pain as i type this blog, they are why I can't sleep, why my back is constantly a huge tangle of painful knots.
My hips are the bane of my existence... That's what the collagen disorder, EDS Type-III is, after-all. As a child, they put these awful bar-shoes on my feet to try to stop me from "toe-ing in" as they called it. Doctors told my parents not to worry and that I'd "outgrow it" and not one specialist was concerned that I can rotate my feet well over 180 degrees inward, even walking with my feet facing forward and backward at once. Here's a photo to illustrate. And here's one that shows what I can do standing up...
It's quite typical for woman (and their doctors) to only put together all the puzzle-pieces of a lifetime of "little things" together after a pregnancy, when all the damage done by the relaxin begins to cause chronic pain. And that's what happened to me.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.