No One Gets Flowers For Chronic Pain

This was a thought that just occurred to me a few days ago--no one gets flowers for chronic pain. People get flowers when they have have a heart attack, break a leg, surgery, cancer--hospitalized for any reason overnight. Not that I'm trying to compare what I'm going through with cancer. At this point, I don't necessarily see cancer as a death wish now, like ALS but it is comparable in a lot of ways--effects everything you do and you're constantly surrounded by doctors, dealing with a lot of emotional and clearly physical pain. (Crazies of the internet--I am not saying you shouldn't be sad about cancer and that some people obviously die from it.)

I'm sure most people just see this as my daily life now and if I'm not outwardly crying and have a smile on my face (which is the norm), everyone just assumes I'm okay. Like I've said a million times before, even when I describe in detail and unless you're around me 24/7 (Sorry Mom and Dad!), you just can't know. Or you just don't want and I totally understand why. It's a lot of sad shit sometimes and I wouldn't judge you for not wanting to invest your time involving yourself in it going into detail. 

Side note: this isn't a pity post--I wouldn't want flowers because you feel sorry for me. I would want flowers as "I respect what you're going through and I think you're handling it well. Here's something beautiful to look at while you continue to deal with it." flowers. 

But then again, I am the kind of person who would send someone flowers just for dealing with life anyway…everyone should be respected and appreciated for dealing with whatever shit they're dealing with anyway. Let's face it, pain or not, there are a lot of people out there dealing with a lot stuff. 

Then again, I've been really #blessed by having really considerate parents. These were "Happy Ides of March" flowers I received at work from my dad. I really am lucky to have them. 

Online Shopping Guide, You're Welcome

Bored as hell? Stuck in bed and looking to feed your online shopping addiction? Well, I've been asked a few times for a list and now I'm bored enough to make it. Although there are a lot (well, maybe not to some people), I'm not posting every brand I've ever known. Just ones I've periodically used over the last few years.

FYI, some sites obviously may have more than the category they're listed under but I will try to organize for what I believe each brand is best known for. Enjoy!

I will put asterisks according to price range so no one is disappointed. One asterisk will be the cheapest.

Menswear:
Jack Spade***

Bonobos**

Topman**

Exclusively Online:
Everlane */**

ASOS*-***

Farfetch**-***

Revolve Clothing**/***

Choies*

SheInside*

Romwe*

River Island**

Stylenanda (Korean)**

Runway Bandits (Korean)**

Piperlime**/***

boohoo.com*

Nasty Gal**

Need Supply Co***

UrbanOG*

SHOPBOP***

Zady***

Front Row Shop**

Soceity6*/**

Swell*/**

Tobi*/**

Shoptiques**/***

Kate Spade Saturday***

The Reformation**/***

Misguided*/**

Eloquii (Plus size)****

SABO SKIRT*/**

FIRST BASE**

Etsy*-****

Department Stores:
Bloomingdale's**-****

Nordstrom**/***

Saks 5th Ave****

Selfridges***

Neiman Marcus***/****

Barneys***/****

Harrods**/****


Private Chain:
Joe Fresh*

Massimo Dutti**

UNIQLO*/**

J.Crew**/***

Zara*/**

Club Monaco ***

American Apparel**

H&M*

Urban Outfitters**

Free People **

Anthropologie**/***

Mango**

Madewell**

Loft**

Topshop**

Forever 21*

Old Navy*

GAP*/**

COS***

& Other Stories**/***

Sandro***

French Connection**/***

Reiss***

Allsaints***

Brandy Melville**

Parker***

Patricia Field*-****

Opening Ceremony***/****

Aritzia**/***

Greylin**/***

The Kooples***

BCBG***

Hope STHLM (Swedish)***

Denimwear:

Levi's*/**

Activewear:
Athleta**

Lole Activwear**

Carbon38**

Sweaty Betty**

Live The Process**/***

Cory Vines**

Lululemon**/***

Home Products:
Zara Home**/***

Z Gallerie***

Dot & Bo*/**

Restoration Hardware***/****

Williams Sonoma***

Casa**

Wayfair*-***

Crate and Barrel**/***

Intimates/Swimwear:
Victoria's Secret**

Agent Provocateur***

Zodee**

Kiki de Montparnasse****

Linda the Bra Lady**/***

Minimale Animale***

The Girl and The Water**/***

Norma Kamali***

Jewelry/Accessories:
chloe + isabel**

Henri Bendel***

Flight 001**/***

Stella and Bow**

Catbird***

Verameat**/***

Dannijo***

nOir Jewelry**/***

In God We Trust**/***

Bauble Bar*/**

Paire**

Moorea Seal**/***

Sabrina SL**

Flash Sales/Designer Outlet:
GILT***

THE OUTNET***/****

Barney's Warehouse***

Last Call-Neiman Marcus***

Bluefly**/***

Luxury/Designer:
Moda Operandi****

NET-A-PORTER.COM****

La Garconne****

Luisa Via Roma****

Matches Fashion***/****

OTTE NY****

LYST**-****

yoox***/****

Intermix***/****

DOVER STREET MARKET*-***

Colette*-****

10 Corso Como*-****

Shoes:
Cole Haan***

Steve Madden**

Aldo Shoes**

Dolce Vita**/***

Sole Society**

SOLESTRUCK**/***

Big Box:
Target*

Beauty:
ULTA*-***

Sephora**/***

Discount:
Overstock*-****

Since I've been home any "nice" clothes are mostly, usually, always 100% ASOS. They have an amazing selection and the buying/returning policy is simple and easy. Most jewelry is from Etsy and most activewear/loungewear is from Target/Old Navy. Since I'm heavier right now than I'd want to be, I haven't been buying anything expensive or even moderately priced until I'm able to drop it.

Hope this helps!

Great Link for How to Understand Someone With Chronic Pain

Great Wikihow article to share with family and friends.  I added my own GIFs/pics for entertainment value.

1

Remember that being sick does not mean that the sufferer is no longer a human being. Chronic pain sufferers spend the majority of their day in considerable pain. If one visits or lives with a chronic pain sufferer, the chronic pain sufferer may be unable to enjoy things they used to enjoy. The chronic pain sufferer remains aware, and desires to do what they used to perform. The chronic pain sufferer feels as if they are stuck inside a body in which they have little or no control. They still want to enjoy work, family, friends and leisure activities, however much pain puts that enjoyment out of reach.

2 Learn the code. Chronic pain sufferers will often talk differently from people free of constant pain. A numeric pain scale is used as a quantitative measure for identification of intensity for pain so the health care providers can measure effects of treatments. The measure describes pain on a scale from 1 to 10; the 1 is "no pain at all, feel wonderful" and 10 is the "worst pain ever felt." Do not assume the chronic pain sufferer is not experiencing pain when they say that they are fine. The chronic pain sufferer attempts to hide the pain due to lack of understanding in others. Accept that words may be inadequate to describe how the sufferer is feeling. Recall a time when you experienced pain, then multiply the intensity and attempt to imagine that pain present twenty-four hours a day, every day, without relief, and then think about this happening for the rest of your life! It's hard to find the words for that sort of pain.

3

Recognize the difference between "happiness" and "healthy". When you have the flu, you probably have felt miserable. Chronic pain sufferers have experienced pain from 6 months to many years. Pain has caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they feel.

• Respect that the person who is in pain is trying their best. When the chronic pain sufferer says they are in pain - they are! They are merely coping, sounding happy, and trying to look normal.
• Look for the signs of pain: grimacing, restlessness, irritability, mood swings, wringing of hands, moaning, sleep disturbance, teeth grinding, poor concentration, decreased activity, and perhaps even writing down suicidal thoughts or language.^[1]

4

Listen. The previous two steps made it clear that chronic pain sufferers can speak in code or make their pain seem lighter than the reality. The next best thing that you can do is to listen to them properly, and to make it clear that you both want to hear what they have to say and that you really have heard it. Use your listening skills to decode what they're hiding or minimizing.

5

Understand and respect the chronic pain sufferer's physical limitations. Being able to stand up for ten minutes doesn't necessarily mean that the sufferer can stand up for twenty minutes, or an hour, or give you a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn't imply that they will be able to do the same today. With a lot of diseases, a person may exhibit obvious signs of immobility, such as paralysis, or total immobilization due to weakness, etc. With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up, and each day has to be taken as it comes. In many cases, they don't know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

• Insert "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, to this step, as the curtailment on a sufferer's ability to be responsive applies toeverything that you'd expect a person in good health to be able to do. That's what chronic pain does to its sufferers.

6

Leave your "pep talk" for your kids and your gym buddies. Realizing that chronic pain is variable, keep in mind that a pep talk can be aggravating and demoralizing for the chronic pain sufferer. As already noted, it's quite possible (for many, it's common) that one day they're able to walk to the park and back, while the next day they'll have trouble getting to the next room. Therefore, it's vital that you don't fall into the trap of saying: "But you did it before!" or "Oh, come on, I know you can do this!" If you want them to do something, then ask if they can, and respect their answer.

• Get over the need to give platitudes about the value of exercising and fresh air. For a chronic pain sufferer, "getting out and doing things" does not make the pain vanish and can often exacerbate the problems. Bear in mind that you don't know what they go through or how they suffer in their own private time. Telling them that they need to exercise, or do some things to "get their mind off of it", may frustrate them to tears, and is not correct advice, especially if you're not medically trained and haven't got a clue. If they were capable of doing some things any or all of the time, they would.
• Remember that chronic pain sufferers are constantly working with doctors and striving to improve and do the right things for their illness. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain; not to mention the recovery time, which can be intense. You can't always read it on their face or in their body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

7

Never use throwaway lines. Assuming you know best by making such statements as "Ah well, that's life, you'll just have to deal with it", or "You'll get over it eventually. Until then, you'll just have to do your best", or worst of all, "Well, you look well enough", etc., are lines that might make you feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope.^[2] Psychologist Mark Grant suggests that you throw lifelines rather than throwaway lines, by saying something like: "So how have you survived?"^[3]

• Admit it when you don't have answers. Don't paper over your ignorance with platitudes or bold allegations not based on fact. There is no harm in saying "I don't know" and then offering to find things out.

8

Check your own patience. If you're impatient and want them to "just get on with it", you risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.

• A chronic pain sufferer may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
• Be very understanding if the chronic pain sufferer says they have to sit down, lie down, stay in bed, or take these pills right now. It probably means that they do have no choice but to do it right now, and it can't be put off or forgotten just because they happen to be somewhere, or they're right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

9

Be sensitive when suggesting medicines or alternative treatments.Prescription drugs, over-the-counter medicines and alternative therapies can have side effects and unintended consequences. Some may not appreciate suggestions, and it's not because they don't want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven't worked carry the emotional pain of failure, which in and of itself can make the person feel even lower. Of course, if there were something that cured, or even helped people with a particular form of chronic pain, then they should be made aware of it. There is worldwide networking (both on and off the Internet) between people with chronic pain. Those can be good resources. Be sensitive in how you bring it up.

• On the other hand, never be afraid to ask them about how satisfied they are with their treatment. Mark Grant says that it is important to ask helpful questions about whether the chronic sufferer thinks their treatment is satisfactory or if they think their pain is bearable.^[4] He suggests that people rarely ask these open-ended "helpful questions" that would help the chronic sufferer to open up and really talk.

10

Don't be put off if the chronic pain sufferer seems touchy. If that's the appearance, it's probably because they are. It's not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.

11

Be helpful. The chronic pain sufferer depends a great deal on people who are not sick to support them at home or visit them when they're too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. You can be their link to the "normality" of life. You can help them keep in touch with the parts of life that they miss and desperately want to undertake again.

12

Balance your career responsibilities. If you are living with a chronic pain sufferer or supporting such a person on a regular basis, you need to maintain balance in your life. If you don't take care of your own needs, health, and work-life balance, being around the chronic pain sufferer can bring you down even though you're probably trying hard not to be. Avoid suffering from carer burn-out by getting other people to help, taking time out, and curtailing your guilt trips. Care for this person as much as you're able, but also care for yourself.

TIPS: 

• Although the person with chronic pain has changed, they think the same; remember who they are and the things they did. They are still the intelligent mind that made a good living at a job they may have loved and had no choice but to give up.
• Pain is a difficult thing to describe to another person. It is felt personally, and it is based in both psychological and physical parts of us. The best thing you can do is to never assume that you know how it feels for that person. Sure, you know how it feels for you but each of us is different and it's impossible to get right inside a person's skin and feel their pain.
• Don't compare health problems. Don't say I've had that before and I'm fine now. Don't tell someone with chronic pain to suck it up and do their part. It shows your lack of understanding and makes the person living with chronic pain feel like a failure that they can't handle what they are experiencing and others would do a much better job in the same situation.
• When the ill person may finally open up to someone and are told, "call anytime", or "I'm here for you", "I will listen" only to be told later they "talk about it too much" or it's "all they talk about" they become more isolated and it becomes an impossible circle. What should they talk about? The latest beach trip they took? The new golf course they tried? Perhaps it is all they can do to get through each day, and with a family or children to care for the struggle is 100 times worse.
• No one wants to feel this way. It's awful living with chronic pain, but it's even worse when people give up on them or misunderstand. Punishing someone for not following through with one thing or another is going to make them feel worse and show them that you really don't understand. Those experiencing chronic pain already deal with more than most could ever comprehend. Everyday life is so hard and very lonely. Constant support, positiveness, communication and of course showing your love are all crucial, because life is quite depressing day-to-day with any chronic pain.
• Not everyone has pain every day and at the same time. It can be very stressful when the sufferer is achy one day then pretty good the next day, and maybe worse at night. You just have to understand that they can't control it and it's frustrating to them, too. Just be understanding and don't sigh and walk away.
• Remember the pain or discomfort and the ability of a chronic pain sufferer can vary greatly even within the span of one day.
• People who live with chronic pain know how they feel and are well aware of their situation, so avoid projecting onto the sufferer how you think they should be feeling.
• When asked about their pain level, chronic pain sufferers may not give you their actual level of pain. Because their pain is chronic, they are used to a certain level of pain, and may just accept that as normal or no pain. They may only give you a correct pain level when they have some form of acute pain, when the "normal" level of pain that they live with daily changes, when they experience pain that now feels differently (I.e., "shooting" instead of "aching", " burning" instead of throbbing"), or when they are asked directly about their current levels of both acute and chronic pain.
• Just learn to be a good listener; sometimes sharing silence is good; you don't have to fill every minute of conversation with words.
• Please don't suggest another doctor, another treatment, another miracle cure or tell how someone else died from the same illness or someone else was cured. We'll smile and thank you, but it doesn't help.
• Instead of suggesting how we 'fix' our pain, consider just being empathetic and giving them a gentle hug to let them know you're there to support them. They already hear and see endless doctors who tell them how to 'fix' or help their chronic pain.
• Sometimes just laying your hand on the shoulder of someone helps give them comfort. Remember to be gentle. Use a soft touch, something to help them connect.
• Truly think about all the responsibility that comes with caring for someone who is sick before dating them. Understand there is a lot to deal with and if you're even the tiniest bit hesitant, DO NOT BOTHER trying to talk yourself into it. You either are in it to be in it for it all or you need to respect yourself and them by not pushing yourself into a situation like having a relationship. It does not make you a bad person to think you can't handle caring for someone with health problems, but it does when you end up resenting them or putting guilt on them for being sick.
• Don't forget that they are still just as normal as you, even if they have different struggles. They want to be seen and enjoyed for who they are.
• Many people offer to help, but really aren't there when asked. You like to think you will help, and you want to be that kind of person. To some, it is simply a habit to say it; it makes you feel good about yourself but in reality you instead have a ready excuse when the request comes. Perhaps deep down you are afraid it will happen to you, and the distance you built helped you to move happily down the trail you have laid for yourself. The chronic pain sufferer no longer "fits" or "belongs" on that trail so off you go. You intend to invite them, you truly want them there, but you think or know they can't make it, they are different now, so you think "oh well, wish she could be here but she can't so..."

Catch Up Post

Hi guys! Sorry I've been MIA for a little. A lot of things going on. Just wanted to check in and post about some of the things I've been using lately that have been helping. The past or month or two have not been the greatest (pain-wise) but I'm convinced things will start to get a little better soon. Myofascial Pain Syndrome is a high maintenance syndrome--I need to do a lot to keep up and feel as normal as possible. Dealing with myofascial pain, to me, is essentially figuring out all my perpetuating factors and figuring out how to correct them (i.e., posture, headaches, balance issues, etc.)

1. Sleep (at least 8 hours, or I know I'll feel like shit. Sorry morning people, I won't be around.)


2. Supplements- I am currently taking B-12 and D for those vitamin deficiencies as well as turmeric, Biotin, Align (probiotic), a multivitamin and a few other random ones. I've really tweaked it down and this is what's working for me. Although the grass is always greener, so I'm constantly looking for new and better things.

3. Exercise and Wellness- This is been a long process for me. The last few months I was really starting to think I was plateauing. I was discharged from PT but it was hard to get to the gym to do my exercises. Swimming feels great but immediately getting out of the pool, freezes my muscles and puts me back where I started. I also feel it's very important to have a professional watching you to make sure you don't re-injure yourself, which is very easy to do.

LUCKILY, I have a found a trainer I just started with last week who specifically deals with people with chronic pain. I think it's going to go great but it'll take some time to tell. Ultimately, I need to get myself back into shape and straighten all my muscles that have atrophied and this guy will most likely be the best way to make that happen.

Once or twice a month, I am also going to a chiropractor to get realigned and a massage therapist who works at calming down my nervous system. (Fun fact: when you become a chronic pain sufferer, you become conditioned to associate touch negatively from constant poking and prodding.) Massages are slowly starting to feel good and become less painful.

I am also continuing to get injections once or twice a month depending on the severity of the trigger points. My last visit had 8 people total in the room watching me. I am really developing a posse. And I also made them take a picture because I knew no one would believe me. I spent the next hour or so answering questions and lecturing a bunch of 2nd years about MPS and hypermobility.  I kind of love explaining medical related things to med students as the girl in fashion.  Suck it, med school.

I'm also talking to my therapist when I need her. I think I've been able to handle my stress more lately. 

4. Knowing Your Limits- This seems like it should be pretty simple but is still hard for me to this god damn day. Take breaks before you get pain--whether you're cooking, shopping, whatever. Bring snacks if you get hypoglycemic. Don't be an idiot.

5. Potential Breast Reduction Surgery- Met with a doctor a few weeks ago after both my doctors suggested breast reduction surgery. My posture is bad and I have a lot of trigger points around my bra areas. I don't think it wouldn't..not help at this point, although it will be miserable to do without pain meds. Sad face. But assuming it will be covered by insurance,  I am very excited at the thought of having normal sized boobs.

6. New and Old Products I am continuing to use for pain-
(Where to buy old products in previous posts.  I will link new products.)

China Gel

Kinesio Tape- Like I said earlier, posture is a super important perpetuating factor in dealing with trigger points. Until I can get my breast reduction surgery (and after), I will need to strengthen my muscles to better my posture. You can wear this stuff for a few days and it's pretty water proof, so I even wear it in the shower. I've had PTs put it on me before but I actually prefer the way I do it. You can watch Youtube tutorials but I know what I needed.

RAGE Muscle Therapy Curve Cane- This thing kinda looks like some wild sex toy,  but it's just a theracane for athletes. I like it because I hate touching my trigger points. A lot of them are in my neck and shoulders and this crazy thing actually helps sometimes.

Instant Cooling Towel- So guess what store indadvertedly has the best trigger point stuff? Dick's Sporting Goods. Their Sports Recovery section is just ridiculously awesome. You can wet this towel and it'll immediately stay cool for like 2 hours. Cool, right? Good for long car rides, impromptu pain situations. Me likey.

Aches and Pains Shower Gel- This is made with eucalyptus and menthol. Feels good in the shower and lets me do a little more than I usually could post shower. I put it in straight when I get in and let it sit until I'm done to set in.

Emergen-C- This stuff tastes like nasty crap, but I chug it post injections and it seems to help. Has electrolytes, etc. I felt like I recovered much faster than usual.

Ergonomic Computer Stand- Like I said, posture is key. I lay down a lot when I'm on the computer and I'm slowly transitioning over to sitting with this thing and I think it helps.

Amazing Grass Superfood Powder- It's hard to eat healthy when you feel like shit. This green smoothie supplement actually tastes pretty good. I mix it in my nutribullet with some OJ, water and 3/4 of a banana and try to drink one every day.

Paleo blueberry muffin and green smoothie. Who am I?

TENS Unit

Nike Roshe Runs- I have flat feet and these are supremely comfy.

Resistance Bands and Stretch Out Hamstring Strap

I'm gonna have a whole closet of shit soon.  It's nap time, bai.