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. :-(
HOW LEVOQUIN AND CIPROFLOXIN CAUSED ME PERMANENT INJURY AND A LIFETIME OF PAIN...
One of the biggest things that contributed to my life-long battle with chronic-illness (in addition to the pregnancy that triggered the onset of severe symptoms) - was 100% the fault of Virtua Hospital and the HORRENDOUS admitting doctor who was put in charge of my care there. (*Please see the foot-note to this story) That's a story for another time, but I promise I'll tell it.
There is some debate about the facts - but this we know for sure: Shortly after my son's birth my husband and I both were diagnosed with Mono (well, to be fair, he had Mono, I was battling with the Epstein-Barr virus as I have immune system issues we didn't yet know about). My husband became jaundiced and was hospitalized, I had an IV infiltrate and and had a serious issue with cellulitis I began to battle with nearly permanent urinary tract infections and kidney infection symptoms.
I had sharp pelvic and abdominal pain, pain in my low back near my kidneys, burning and the constant feeling of needing to pee.... it was never-ending and so severe that I went to the ER nearly a dozen times because absolutely nothing would reduce the pain short of IV morphine or dilaudid. It became unbelievably bad during my periods, after sex, after bathing, swimming... I did everything possible to avoid UTI's - literally followed the handbook to a T - including giving up sex for quite a while despite the fact that I was newly married and very much in love. Nothing I did helped.
I was admitted to Virtua Hospital more than nine times in the year after my son was born, and several more times in early 2012. During the first few hospitalizations, I was told that I had MRSA in my kidneys... MRSA is a HIGHLY infectious staph infection. It HAD to have been given to me during a cathaterization... and up until that point I'd had exactly ONE catheter in my entire life: DURING MY C-SECTION... at Virtua Hospital. Isn't that nice? I was treated like a bio-hazard. Everyone who came into my room suited up as if I was an E-Bola patient and even friends and family were supposed to wear gowns, masks and gloves to come see me. My newborn child who I'd care for at home, skin to skin, I was told was not allowed to visit me in the hospital (they got WW-III about that, and I won, btw.) I missed my own baby shower (it was after my son's birth) because I was in the hospital, and I was in quarantine, so they wouldn't even let me guests visit me.
So the onslaught of antibiotics started. They pumped me full of antibiotics and I never began to feel better - only worse. The only thing that ever seemed to help the UTI symptoms was over the counter AZO (which I still use to this day on a regular basis) - even the various antibiotics didn't keep the infections at bay for more than a week or two. Some of my hospitalizations were LITERALLY just days after I'd been released. I was repeatedly treated with two strong antibiotics: Levoquin, and Ciprofloxin.
Each time I would get a bag of IV antibiotics, the pain would come. I felt as if they were pumping wet cement into my body and it felt as if every joint was hardening to a solid. I felt like I couldn't move - the fire-y pain that shot through my veins was worse than the broken jaw, worse than third degree burns, WAY worse than the c-section, even worse than the bowel impaction and intestinal tears I'd survived... it was HELL. I reported to the nurses my horrible pain. Occasionally a doctor would up my dilaudid from every 6 hours to 4, or add Vicodin on top of my morphine, but nothing was ACTUALLY helping. I was just getting sicker and no one knew why.
I'll tell you another time about the world war that went on between the doctors and I, but suffice to say that if a hospital can't explain your symptoms, they have two responses...
1) They'll tell you that they don't believe you're actually sick because your symptoms "don't make sense" or because nothing you're complaining of is showing up on their tests.... and they'll discharge you, even if you have VISIBLE symptoms, such as bacteria or an infection they can confirm.... they'll discharge you, after having you on anti-inflammatory medications, pain medications, antibiotics, probiotics and ran a whole bunch of tests.... and they'll send you home with NOTHING. The hospital will flat out tell you that they don't know the answer and that they "can't keep you here forever" and will simply send you home with NO answers.
2) They'll imply that perhaps you have a mental illness, that the pain is in your mind, or worse, that you are simply there seeking pain medications because you are a drug addict. I repeatedly told the doctor after being trearted with antibiotics that I was experiencing SEVERE and worsening pain... and in response, the admitting doctor flat out accused me of "drug-seeking behavior" claiming that my report of pain made NO sense and COULDN'T be true. (*Please see the foot note below about the serious affects of the Fluoroquinolone family of antibiotics.)
*I was accused of this once - by the same idiot doctor I mentioned above and in the blog post (here).
Why? Because at the time, in her words "No one being treated for a kidney infection SUDDENLY has sharp severe pain in her hip, shoulder and lower back. It makes no sense." Seven months later, a black-box warning was added to the Fluoroquinolone family of antibiotics- including LEVOQUIN and CIPROFLOXIN. Read more about this in the footnote or (here).
Basically what it comes down to is this- SEVERE PAIN as a side-effect of those antibiotics is a sign that something is VERY very wrong. And she continued to treat me with those same drugs, over and over and over, all the while, claiming that I was "over reporting" my pain and wasn't being truthful. In the end, her ignorance and ignoring my reports of pain, ended in PERMANENT damage to my joints, throughout my entire body, that I now have to live with forever. .
** Footnote Regarding Fluoroquinolone Antibiotic **
Approximately 7-9 months after I was accused of lying when I reported severe pain during and after IV antibiotic treatments - the FDA released new Black Box warnings about the SERIOUS dangers associated with these antibiotics. Here's the information from the FDA.
Warning: Fluoroquinolone Antibiotics May Cause Permanent Nerve Damage.
“The U.S. Food and Drug Administration (FDA) has required the drug labels and Medication Guides for all fluoroquinolone antibacterial drugs be updated to better describe the serious side effect of peripheral neuropathy. This serious nerve damage potentially caused by fluoroquinolones may occur soon after these drugs are taken and may be permanent...
Peripheral neuropathy is nerve damage in the arms and/or legs, characterized by “pain, burning, tingling, numbness, weakness, or a change in sensation to light touch, pain or temperature, or sense of body position.”
Due to their tremendous health risks, fluoroquinolones should be reserved for treating serious bacterial infections that won’t respond to any other treatment, when the patient is made fully aware of the potential for serious adverse events. Instead, they’re often inappropriately prescribed for mild conditions like sinus, urinary tract and ear infections.
In fact, fluoroquinolones are among the most commonly prescribed antibiotics in the United States. I highly recommend you take pause before filling a prescription for these drugs, especially if you have a “routine infection” that has not been treated by other agents that have a safer side effect profile.
You should not expose yourself to this degree of risk unnecessarily! The dangerousness of fluoroquinolones definitely warrants some serious discourse with your health care provider about whether they are really necessary, versus safer treatment options.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.