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!
If you or a loved one is coping with Ehlers-Danlos Syndrome, POTS, ADHD, or a variety of other disorders that affect your sleep, surely you know how frustrating this can be. The amount and quality of the sleep we get affects every part of our lives. If you are one of the million plus people who doesn't get enough sleep, or doesn't get QUALITY sleep, then you understand the frustration that comes along with staring at your ceiling for hours, unable to turn your brain off and just relax.
I have had trouble with sleep that dates back to my being a teenager - it always seems like I've had trouble finding the "off-switch" for my brain, or worse, I'll get sleep that is constantly interrupted. It's infuriating to be completely exhausted, yet unable to fall asleep - and worse, getting a lousy night's sleep doesn't just affect you that very uncomfortable night. Getting lousy sleep (or no sleep at all) worsens almost every symptom and side effect that comes along with chronic illness.
HERE ARE JUST A *FEW* WAYS SLEEP IMPACTS THE CHRONICALLY ILL: (But don't worry - a little further on, I'll help you find solutions to get better rest!)
-Chronic pain intensifies significantly.. Folks who suffer from migraines and other headaches often report that headaches are infinitely more intense when they haven't had enough rest. Musculoskeletal (muscle & bone) joint pain as well as nerve pain pain (like the kind caused by fibromyalgia) also tend to be significantly worse. The very act of laying in a poor sleeping position, on a mattress that is too firm OR too soft or by not properly supporting your neck and joints during sleep will cause a bunch of problems: It can cause or worsen muscle spasms, you can suffer from
dislocations and subluxations and can cause lasting sciatica and numbness, tingling, electrical-type pain and burning in your limbs as well as worsen Reynaud's Syndrome.
-You'll have trouble thinking clearly, focusing, listening to and truly understanding what you're hearing. If you are anything like me - you already suffer from brain-fog, difficulty concentrating and trouble finishing your sentences. The fact that your brain needs solid rest in order to function properly is no secret - we've all tried to make it through work or school after a night of no sleep and if you have children you know EXACTLY how badly your mind functions on very little sleep.
-Your moods not only worsen, but become more unstable. While it's not impossible to still find a reason to smile despite a bad night's rest, it's not surprising that it doesn't take much to ruin that good mood. We've all been there - your body's exhausted, your mind is fuzzy and all it takes is someone to look at you sideways and you snap. When your body and mind don't get enough rest, it's difficult for your logical brain to keep control of your emotions and it's much easier for you to become irritable, confused, argumentative and if this goes on for some time it absolutely leads to depression or symptoms similar to bi-polar disorder. Our bodies are unpredictable enough - the last thing anyone with EDS needs is sudden mood swings.
-Your hormones become out of whack, which affects EVERYTHING. If you've ever dealt with a thyroid disorder, you know first hand how important it is that your hormone levels be correct. When you don't get enough rest, your thyroid can become thrown off and start over OR under-producing the crucial chemicals your brain needs to control things like your body's thermostat - it you find yourself sweating uncontrollably, suffering from headaches around the sinus area when you're not sick or don't typically suffer from headaches, your menstrual cycle can be thrown off and periods skipped entirely and much much more.
-Mast Cell Activation and other hystemine/allergic reactions are more likely to occur.
. While there are still many questions about what causes Mast Cell Activation - it is generally thought to be brought on by a variety of things including reactions to physical triggers such as foods (similar to an allergy), irritants in the environment (such as scented perfumes, soaps, and other body products), insect bites and stings, as well as certain drugs and alcohol (including NSAIDS, antibiotics, radio-graphic dyes as well as a reaction to heat and cold, friction, sunlight, fever, and as an emotional response to stress - but everyone agrees that all of these factors are compounded when you aren't getting enough quality sleep!
If you are a medical Zebra like myself and a believer in "The Spoon Theory" (Click the link to read Christine Miserandino's blog that explains Spoon Theory) - then you know that we already have limited amounts of energy. The most imperative part of re-building that energy is getting rest. So what do you do when counting sheep isn't cutting it and the Benedryl isn't working anymore?I have some suggestions that have helped me - and hopefully they'll help you too!
INCREASING NOT JUST THE QUANTITY BUT THE *QUALITY* OF YOUR SLEEP.
It always seems like my WORST nights of sleep happen when I have something to do the next morning - weather it's an early doctor's appointment or a day that my parents aren't around to help take care of my son in the early part of the day - if I have to be up early, inevitably I can't sleep the night before. This means that any time I've got something important to do, I'm going into it after having stayed up all night - not good - so I've found some things that help e get better sleep and more of it. Try some of these tips and then comment to let me know what works (and does 't work) for you!
1) When I know I have to be up early one day, don't wait until the night before to set your alarm. It's a little bit of mind-trickery, but if like me, you find yourself doing the mental math ("If I fall asleep right now, I'll only get six and a half hours of sleep....") - then you're already setting yourself up for failure. If you have a doctor's appointment on Friday at 9am, set your alarm on Monday and don't forget to give the alarm a name - so you don't accidentally forget the appointment. By doing this, you will prevent a little bit of last-minute fretting over how many hours you do and don't have to sleep. It's not a bad idea to turn your alarm clock around so that you can't see what time it is - you can always turn it back around in the morning when you actually NEED to know what time it is.
2) Prep your environment for sleep - in a big way. If you're having trouble sleeping all the time, get a bed time routine and do your best to stick to it, Especially those nights when you know you're working with an early morning. My bedtime routine includes taking the warmest bath I can tolerate (I'm sure many of you have POTS like I do and warm water + warm bathroom = dizziness and syncope.) Make sure your bedroom is dark - turn clocks away from you, put your cell on silent and lay it face down so the glow can't be seen. Turn computer screens and TV's off. Don't watch ANY tv, read text messages, check emails or do ANYTHING else related to electronics in the HOUR before you want to fall asleep. It's impossible to turn your mind off fully if you're anticipating an email response or worrying about something you just read on facebook. By giving yourself an hour of tech-free time every night before bed, you give your brain the chance to focus on the task at hand - getting proper rest.
3) Get comfortable. The ideal position for a good night's rest is lying on your back, with your head slightly elevated by at least one pillow, and a bolster (round pillow - or a regular pillow folded in half) under your knees. This is one time when it's okay to splurge - new sheets, a really comfortable comforter, a great supportive pillow, some aromatherapy candles and black-out curtains for your windows can be a great investment. When I bought my house years ago - I absolutely splurged on my new bedroom. I bought luxurious curtains that blocked out all sunlight (because I did shiftwork, and often had to sleep during daylight hours) - and the high thread-count sheets and the luscious down comforter I bought really made slipping into bed feel like a high-end hotel experience. Pamper yourself, even if your only upgrade is a new pillow!
4) Lower the temperature- if you have a/c unit specifically for your bedroom (and I HIGHLY recommend that you do - it's FAR less expensive to run a window unit A/C in your bedroom that worrying about adjusting the entire house's thermostat to get your bedroom comfortable at night) - then go ahead and turn the temperature in your bedroom down - low - under 70 is preferable. It's more comfortable to sleep in a colder environment, even if you then sleep under a big fluffy pile of blankets. My bedroom temperature is set down at 64 degrees (we have a window A/C unit specifically for our bedroom - and it's the best $35 I've ever spent - we got it at a yard sale!). My quality (and quantity) of sleep has improved IMMENSELY since investing in an A/C unit that is beside our bed. Another option or additional help is a ceiling fan. On top of pumping in icy-cold air, we also have our ceiling fan on high most nights, even when it's snowing outside!
5) Pick clothing that allows you to move freely and isn't overly warm. Some people like to sleep in just a t-shirt, others need "jammie pants" (those fleece fuzzy draw-string style pants) - some people like yoga pants or capris, and others prefer to sleep in the nude- but whatever you choose, make sure you aren't too warm. Another tip is to keep socks or slippers, and a robe beside your bed. If you lower the temperature in your room - and you need to get up during the night or in the morning, you don't want to freeze - so keeping warm clothing at arm's reach is a good suggestion. Many times those long sleeve flannel pajamas that felt great when you first climbed into bed felt warm and fuzzy, but if you wake up in the middle of the night in a pool of sweat, then they weren't an ideal choice. Consider if a pair of socks will help keep your feet warm or if you're the type that likes to stick a foot outside the covers to help regulate your temperature! Whatever is right for you: Dress appropriately!
6) Don't eat right before bed - but don't go to bed hungry either. Have a light snack, like a couple of peanut butter crackers, a handful of grapes or even a small bowl of ice cream about two hours before you plan to head to bed. Try to shy away from carb-heavy snacks, lots of sugar, or caffeine before trying to get to sleep. Make sure your last cup of coffee was at least two hours before your intended bed-time, and if you DO want to have something to drink while you're drifting off to sleep try a decaf tea or warm flavored milk - like chocolate or milk with cinnamon and vanilla extract added. A small warm non-caffinated beverage can help you off to dream-land. Remember to eat at least an hour before bed, especially if you didn't have a big dinner -If your tummy is rumbling with hunger, you're going to have a hard time both falling -any staying- asleep.
7) Always use the restroom before you settle in. You might not FEEL like you need to go - but there's nothing worse than climbing under the covers, focusing on falling asleep and then realizing you sorta need to pee. You'll lay there trying to decide if you'll be fine until morning - struggle over the thoughts that you'll wake up painfully over-full and needing to dash to the rest room, and one way or another, this will disturb your rest.
8) Time your medications wisely. If some of your medications need to be taken in the evening or at night time - how do those medications affect you? Do they make you sleepy? Perfect, those you should take after you've climbed into bed and before you drift off. Do others give you a burst of energy, make you hungry or need to be taken hours before -or after- a meal? Use a pill organizer so you aren't digging around looking for a missing pill bottle. Have a drink ready and by your bed for your night time medication - and another drink standing by for the morning if you need to take medications before you get out of bed.I have noticed that some of the pain medications i'm prescribed can make me jittery - and larger doses tend to keep me awake at night, so I've learned to dial back the dosages or take those hours before I intend to head to sleep. And if you're still having trouble dosing off, consider taking medication that will help ease you to sleep - something like benedryl (this is the ingredient in Nyquil and Tylenol PM that helps make you sleepy) or a more natural choice - Melatonin. 10 mg of Melatonin really helps me fall asleep quickly on nights that I'm having trouble turning off my brain!
Remember - most prescription sleep medications can have a lot of ramifications - from the dangers of mixing them with other medications that can affect your breathing (like pain killers, certain psychiatric medications) - these medications can be habit-forming, they can have effects that last well into the next day (this is especially important if you have an early morning - most prescription sleep aids say right on the bottle "Do not consume this medication unless you have at LEAST 8 hours to dedicate to rest") - regardless of their recommendation, many sleep-aids like ambian and lunestra can leave you feeling groggy, bleary-eyed, unfocused and downright tired well into the next day. Another thing to keep in mind is that prescription sleep aids may force you asleep - but they might not help keep you asleep,so always take these medications for the first time when you have plenty of time to dedicate to sleep, as well as a person to check on you throughout the night to be sure you're not having any kind of negative reaction. Lastly, many of these medications can cause periods of amnesia - some of which last 24 hours or more - so always test these medications when someone is around to make a note of any odd behavior or unusual things that you say or do while under the influence. In general - it's much better if you can find natural ways to get good sleep rather than taking medication.
9) Now this is my favorite secret - and the trick that (for me) works without fail....
Have you ever heard of ASMR?
ASMR stands for "autonomous sensory meridian response" and it describes that pleasant tingling sensation in your scalp and spine - or sometimes gives you goosebumps when you're experiencing something relaxing and wonderful that feels *so* good - like when someone plays with your hair, or gives you a massage. ASMR isn't experienced by everyone - and some people only experience this response to actual physical stimuli - so if you have a spouse, ask them to dedicate fifteen minutes or so before sleep to helping you reach this deeply-relaxing state by gentle tracing letters on your back or lightly running their fingers across your neck and under your hairline - up and down your arms, on the palms of your hands or by gently massaging your scalp.
Don't have a spouse - or your spouse isn't available reliably at bedtime? NEVER FEAR! There's an online alternative that can help you reach that fuzzy relaxing state of near-unconsciousness. There is an entire online community of folks called ASMRartists who create audio and video content specifically for the purpose of eliciting the tingly response from your scalp - and for many people, it works WONDERFULLY. I have watched hundreds of these videos and even on my WORST nights of anxiety and pain-somnia, i've found great success.
So prepare yourself for immersion in the world of ASMR... get yourself a pair of headphones (preferably "Sleepphones" - a headband which has phenominal sound and you can sleep in any positoon you prefer).
Lay back - relax, and check out a few of my favorite videos. Below, I'll link you to my favorite ASMRarist's You Tube Channels, so you can peruse the various styles - there's everything from role-playing, to watching people draw, paint (Think the "Fluffy Little Trees" of Bob Ross on PBS) - to elaborate story-lines with sci-fi added special affects.
So get comfortable, plug in your head phones, and try ASMR.... check back tomorrow for a list of some of my ASMR favorites!
-------- 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. :-(
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.