Friday, July 21, 2017

Wonder Woman or Mr. Glass


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    When I was little, I loved cartoon superheroes. And even as a girl, I had several characters to choose from. But I didn’t imitate any of the standard “good” characters like Wonder Woman, Supergirl, or even Batgirl. Nope, not me! I chose a darker, more enigmatic character that I read about in the comic books most of our Saturday morning heroes were based off of. I followed the escapades of Black Widow and then reenacted them in my attic complete with gold toned bracelets and black boots.   

    I’ll admit, part of her appeal was the fact that she was a spy and considered a bad girl, which I definitely was not! The irony that I was morbidly afraid of spiders was not lost on me either. Nor was the fact that even then, I was showing signs of physical weakness. (I just did not know why back then.) So when I couldn’t breathe trying to complete the required mile run at school, I came home and read about Black Widow’s speed in capturing the bad guy of the week. And when I couldn’t climb the rope for the fitness test, I’d pretend I had her special web-slingers and climb to the attic ceiling. (The fact that the ceiling was especially low helped a lot!)Screenshot_20170722-011327.jpg

    As I grew, I retained an affinity for ‘doing good’ and worked with the disabled* but my health seemed to take on a life of it’s own. And like every Nerd knows, even good guys go bad sometimes. Remember Spiderman 3? (No, I’m not talking about the dancing.) So now I felt even more like the heroine of my youth. A lot of good mixed with something very bad. Well guess what? I spent my childhood fighting evil in my attic. I was already mentally prepared. After all, isn’t a disease attacking you from the inside the embodiment of an evil arch enemy?Screenshot_20170722-011521.jpg

    And this enemy is trying to break me. I feel like someone has stuck kryptonite EVERYWHERE. (I know, wrong analogy. Bad Nerd!) But seriously, I leave the house in hot weather, I wilt. Touch me during a flare up and I’ll hit you.
Touch me during a flare up and I’ll hit you. (Glad I didn’t pick Wonder Woman
now aren’t ya?) I fall And I break things. (Heck, I broke something bending over once!) Anyone remember Samuel L Jackson’s character in Unbreakable? I own braces for so many different body parts that I rival Iron Man’s armor! (His is much more stylish though.) I’m even weaponized with a cane like DareDevil, but mine can’t do cool stuff. (Note to self, upgrade cane.)Screenshot_20170722-011752.jpg
  
  So here I am, some 40 years after my attic adventures, and 21 years after being diagnosed. I have had many battles over the years. Many many battles. And I have won a lot of them. But I have also lost some. Such is the life of a closeted superhero. But I still believe in the tenets that superhero lore was built on. The good guy always wins. And maybe that doesn’t mean the whole war for those of us with chronic diseases. Maybe it just means the little battles. Because I know I’m always going to be sick. And I may lose the balance and grace (haha) I used to have, but a bunch of white cells that have clearly lost all sense of what planet they’re on are certainly not going to take away my sense of humor. Or my sense of right and wrong. Or the fact that I snort milk out of my nose if you make me laugh.
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(Shhhh! That’s my real super power!)

*Side Note: Black Widow frequently partnered with DareDevil who was blind.

Sunday, July 16, 2017



What The Sports World Needs To Learn About Sjogren’s


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    Yesterday, I was reading about Venus Williams. You know, The phenomenal woman who plays tennis better than anyone ever, except maybe her sister? The Venus Williams who also happens to have Sjogren’s Syndrome. You know, the debilitating disease that most people think is just dry eye and dry mouth but is actually so much more? Ms. Williams first announced she had Sjogren’s in 2011 and it has been the subject of much discussion in the sports world since with Williams herself giving few interviews about it focussing mainly on her healthy diet and lifestyle. But the articles I read yesterday were about here latest tennis championship attempt and the role her Sjogren’s may have played. And I for one, wasn’t happy.
    Here’s my issue, which has nothing to do with Venus herself. The media seems to have no idea what they’re talking about when addressing the issue of Sjogren’s in connection with Venus Williams and her tennis. I really shouldn’t be shocked about this. Most people have never heard of Sjogren’s. I’ve had to educate most of my own care team over the past 21 years. Some doctors even now are still at a loss when I come in to the ER. So why should I fault the media?
    Because the media is supposed to do their research before putting out a story, or even a headline, for publication. So yesterday’s headline worded “[Williams] has overcome a lot...including...Sjogren’s” particularly upset me. My reason is simple. One does not simply ‘overcome’ Sjogren’s. It is degenerative and incurable. It does not go away, only into “remission”. Not even someone as strong as Venus Williams, a woman destined for the International Tennis Hall of Fame cannot overcome a degenerative and incurable disease. And to suggest that her daily struggle with such a disease is anything less than it is by suggesting the disease has been overcome  is to diminish what she on a daily basis; especially when she competes with this monster of a disease hiding somewhere inside her body like a tiger waiting to pounce.
    It also diminishes what rest of us out in the world live with and accomplish everyday with this disease. We raise children. We work jobs. We go to school. We manage families. We fight the monster. We fight and we keep fighting because there is no overcoming, just fighting, getting through the day, and waking up again. It’s a constant battle. It’s our lives. And it’s invisible. So many of us are told it does not exist, it can’t be that bad, and we are making it up. So we depend on news stories to uphold our pain and our struggle so our families know it’s real.

                              And then the media says it can be overcome.

                                             Do you understand now?


    And let me just mention the commentators. Believe me, I understand that they will know more than I ever will about tennis. I was a swimmer, ok? But they know nothing about Sjogren’s. NOTHING. And I do. So I may be overstepping here, but I have to call out John McEnroe. Tennis is a really demanding game. It’s fast paced and physically draining. Any player can “hit the wall” during their final sets. For McEnroe to say “Sjogren’ could be rearing it’s ugly head” in reference to Venus Williams and her seeming loss of energy is speculative at best and inappropriate in my opinion. I realize injuries are always brought up when players are not at their best, but this is NOT an injury. It is a forever thing that Venus will learn coping techniques for that may or may not always work. As an athlete, he should know most don’t like to have a loss blamed on old injuries, illnesses, or anything other than “Hey, she outplayed me today.”. And because her illness is chronic, it should not be brought into speculation. In other words:

  She has earned the respect of speaking for herself about her performance.

              Sjogren’s or not, she knows her body best and what affected it.

    So the moral of this very long rant for those of you in the media is; Ask Venus what’s going on, don’t assume it’s Sjogren’s. This disease is nasty but it comes and goes. Realise there’s no overcoming it. It’s degenerative and incurable. I get that Ms. Williams has more resources at hand to hinder the progress of the disease than I will ever have and that for her, that means more chances at “remission”, but for the sake of awareness, please write about this disease with accuracy. It helps us all.
     
                We all deserve respect for what we deal with-SJOGREN’S.

   PS: Keep up the good fight Venus, you’ve got a whole community backing you!


    

Thursday, July 13, 2017


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     Technology That Can Help Those With Sjogren's


    For those of us with Sjogren’s Syndrome, life is full of unpredictable complications. This means we have to be prepared at all times. Usually, we do this by carrying a purse full of stuff that no one else even thinks of. Sometimes, it takes an entire extra bag of stuff. But there is something I have learned in my 21 years of being diagnosed and listening to my body and it’s triggers; and that is that there are things that reduce the need for some of this excess stuff. Actual products that have been invented that help Sjogren’s though I doubt that was their original intention. Here are my favorites and why:



1) My Tablet: OK, this is not a new invention, but as an English Lit major, I love to read. And I am quite good at it. Meaning I can devour a book in a day or two tops. Now I never thought I would give up my paper books, I love the smell, the turn of the page, the feel… But lately, my hands have been getting weaker and I have started to drop the books while I am reading. It is also getting harder to turn the pages due to my Essential Tremor. Shaky fingers make everything more difficult. So I switched to ebooks. No more dropsies, no more hand cramps, and the back lighting option is so much easier on the eyes that it eliminates headaches as well!

2) Migraine Glasses: For me, these have eliminated a lot of tension headaches and reduced many of my trigeminal headaches. They are designed for people with extreme light sensitivity. And as people with Sjogren’s, so many of us have that issue due to our extremely dry eyes. These have a pleasant pink hue and I am currently rocking the over Rx pair before I decide if it’s worth it to tint my everyday wear glasses.

3) Wrap Shoes: I know-what? These are relatively new on the market, but I was intrigued when I saw them. Sjogren’s can cause neuropathy. Not in all of us, but from reading my support group pages, it seems a great many of us have it. At this point, I really cannot feel my feet. So I get into a lot of trouble because I love walking around barefoot. Enter these wrap shoes. The sole is rubber, the top is rubber and fabric. The can be worn indoors and out. Not exactly for rock climbing, but then again, when was the last time any of us went rock climbing? They are comfortable, easy, and protective. What else do I need in my oh so hectic (LOL) life?

4) Litter Boxes: There are a lot of new “scoop free” litter boxes out there. With three cats and three recorded back fractures (only 2 of which I remember-go figure) scooping each and every clumpy thingy became impossible. My new sift tray system has made cleaning 3 boxes quicker than cleaning one was previously! My back feels so much better with these. And in the long run, the litter isn’t getting wasted adding to the overall benefits of this system.

5) Light Up Water Bottle: My overall favorite. My new water bottle. Though I wish it held more, it’s sensor syncs with my phone and keeps me on track with my hydration. As a Sjogren’s sufferer, I need to drink more than the average person. But as an average person, I sometimes get caught up with day to day activities-talking, watching a movie, running errands… If my own thirst does not become overwhelming, I can often forget to keep up my hydration at regular intervals like I should. Like we all should to be honest. I can program this bottle to my hydration needs and it will track my intake and remind me with texts and flashing lights when I am falling behind. To be honest, even the best of us could use reminders like this and it has been a real eye opener about my drinking habits!

    I know to some of you, these objects may seem odd and a waste of money, but to many of us with Sjogren's, these items can be the answer to problems we have been struggling with on a daily basis. And I totally understand that not all Sjogren’s sufferers will develop all the same symptoms, but knowing there are products out there just in case, at least in my mind, could be really helpful if the need arises. I spent months thinking researching these items and then thinking about trying them. They all actually worked for me. By writing this, I am hoping to bring some hidden but helpful products into the light.

Wednesday, July 12, 2017


Leisure Time

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    So today I was watching Dr Phil. It was an old episode about a study showing how stay at home moms have more leisure time than they think. Granted, some of the definitions given for “leisure” were quite unusual, (getting a root canal if alone?), the basic theme of the show was redefining how we spend our time and if being busy is really the status symbol we think it is.
    I’m here to tell you it’s not and be careful what you wish for. This essay will be harsh. But the fact of the matter is, I am sick of people saying that they wish they had more time. Even more, I am sick of them saying they wish they had the free time I have. Because seriously people, you really do not want the free time I have.
Let me tell you why…

  1. I do NOT live a life of leisure. My schedule is filled with doctor’s appointments with life sprinkled in between. Today I was supposed to take my dog to the vet. But I wasn’t feeling good. So I had to cancel it. Now I get to try to fit it in between an eye appointment, where I just might get a lumpy thing removed, and my nerve conductivity test, yup-shooting electricity through my arms to measure how much of it gets to my brain! (sort of). Such is my life.
  2. Even when I have leisure time, I CAN’T leisure. It’s true. The days I spend at home doing nothing, I can’t usually relax. I’m either in too much pain, hence the reason for being home in the first place, or I’m trying to to get some sort of housecleaning done. And since my house is a complete wreck, I usually make very little progress.
  3. If I do get to leisure, I usually gets WRECKED anyway. Since my disease is unpredictable at best and comes on quickly at times, I can be out having fun one minute and unable to breathe looking for a chair the next. I bring my cane and water everywhere but it’s not always enough. Last week, I suddenly became dizzy and nearly fell over trying to sit back down at my volunteer position. I cuddle kittens. KITTENS! Not exactly physically demanding.
  4. When none of the above happen, I’m usually too exhausted to enjoy leisure. Either that or I really can’t decide what on earth to do. I do love to read but can’t count the times I have fallen asleep with a book. I watch a horrifying amount of movies. Twice. Because I literally cannot remember the ending. So you tell me, does sleeping count as a leisure activity?

    Like I said, be careful what you wish for. I was diagnosed when my second child was born. I was never in the position to overschedule myself and then wish for more time to relax. I only had enough in me to allow them to pick an activity and drag myself to it and then wish I needed less time. Less time for me. Less time for doctors. Less time for hospitals. Less time needing to rest. And more time running around with my kids.

Thursday, July 6, 2017



Am I Unpatriotic For Not Standing During The Star Spangled Banner

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    Recently, I had an experience that made me question some of the actions that I have always taken as a person who experiences pain as the result of an unpredictable illness. The event wasn’t directed at me personally, but was so aggressive in nature that it actually caused some concern to me and several other people in the vicinity. And it was all in the name of patriotism.
    The story is this: My family and I went to a baseball game on the fourth of July. It’s kind of a tradition with us-see the game and watch the fireworks afterwards. Anyway, during the fireworks, the song “God Bless America” sung by the incomparable Ethel Merman was played over the PA with some amazing displays. As the song began, the man sitting in front of us stood up and took off his cap. When it became apparent that no one else was going to stand, he started to urge the crowd to follow his lead. He actually started yelling at all of us and informed us that it was our patriotic duty to stand during this song. It was very aggressive and very uncomfortable.
    Fortunately, nothing untoward happened. But this situation made me think. I don’t always stand for the national anthem. No, I’m not making a political statement, and I’m not an unpatriotic person. Quite the opposite. I know our country is great even if it’s confused at the moment. And our service men and women deserve our support and thanks for their sacrifice. No, my issue with standing is much more basic.
    I don’t stand because on that day, I can’t. It hurts too much. Or the simple act of getting up is too hard that day. I may have expended all my energy just getting to wherever I am and need to rest- my knees, my back, my hips… This isn’t every time I’m out somewhere by the way. I stand whenever I can. It’s my idea of use it or lose it. I just can’t always use it. But then I encountered the gentleman described above.
    So back to my question: Am I unpatriotic for not standing? Is my pain a justifiable reason for remaining seated or should I try harder in recognition of those who lost limbs or lives? After all, I haven’t lost either, I am just in pain, as are numerous others who fought for our country. How do I justify my infirmity as being such that I not pay respect to the country, my freedoms, and those who fought for them?

    I guess in the end, it will remain my decision on any given day if I am able to physically push myself or not. Even more, I know what’s in my heart and that is respect for all people. And showing patriotism isn’t yelling at people. It is, simply, this respect. Sitting or standing. Towards all who live in this great nation.     

Thursday, June 15, 2017

Accepting Failure

    When living with a chronic illness,especially a degenerative one, one of the hardest things to get used to is the gradual loss of abilities. It can happen overnight. One day you open jars, the next you're just too weak. Or, it can happen gradually. Like when you notice you're carrying less and less on each trip into the house after shopping. This is the nature of of chronic illness and it is probably the one thing that our friends and family understand the least.
    Take the recent vacation I just took with my husband. (Recent as in I'm on the plane flying home as I type!) Being that I have been fighting my disease for 21 years, we have been on many trips together requiring air travel. Yes, it's not easy for me but I know what I need and so does my husband. He's more than willing to pick up the slack.
    But this time was different. This time I failed.
    Usually, I am able to walk to check in, rest, walk to security, go through the disability line, rest, and get to the gate. Even in larger, busy airports I have been able to accomplish this. But today at McCarren Airport in Las Vegas, I did not. I made it to the security check point and I crashed. The line was so long and I was so tired and dizzy and achy that I called for a wheelchair. And then I cried.
    I know that doesn't sound like such a big deal. I have a condition that causes pain and breathing issues and now I have near constant pain from back fractures. But mentally, I just wasn't ready to take that step yet. And I'm still struggling with it.
    Now I know that this isn't really a failure and that by using this word, I am being exceptionally hard on myself. But the reality is that to us, the chronically ill who are used to being able to do certain things, being able to meet our own expectations is vital. In our minds, it means we're still winning. Even though we know that some day we may not be able to do what ever it is we are attempting, as long as we can do it that day, all is right in our world.
     So back to my failure. I know that year after year, I will lose my ability to walk longer distances and stand for long periods of time. I had actually prepared for having issues with this in and around Vagas itself due to the heat. But I did well with my walk, rest, drink strategy so it did not occur to me that the airport would take me down. But it did and I have to face it. I have to accept my failure.
     However, in doing so, I will also be accepting myself. My continually evolving physical self. And as a chronically ill person, that is a necessary process. Each and every time my disease progresses or I finally have to give in to another loss of abilities, I have to accept my new self. And that's OK. Because it's actually a process everyone should go through as they age. It's just that healthy people can try to avoid it or put blinders on while we cannot. And truthfully, ignoring these changes can be really dangerous.
    So although I'm still not fully on board mentally with my body’s decision to shorten my walking distances again, I am dealing with the realization that I am at another stage in my disease process. And I am OK with that. That's how this all works. I knew that from the beginning. And at some point, I'll realize it's hard enough fighting this monster of a disease, I need to stop fighting my mindset about it as well. After all, that wheelchair ride was pretty darn restful! And my attendant was a riot! (They didn't let my husband push me.) So in reality, what's wrong with making my life a little easier and not putting my body through quite so much when I travel?
    I want all of you out there who question yourselves when you need special accommodations or worry about how others perceive you when utilizing such accommodations to just stop. Put all that down. We are all fighting whatever illnesses, conditions or disabilities we have already. Physical or mental. It's time to stop adding unrealistic expectations and guilt on to that as well. Deal?

Saturday, June 10, 2017



Are There Rules To Disabilities?

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    So right now, I’m on vacation in Las Vegas. I know, lights, action, celebs… (Seriously, James Woods and that guy from ‘Coach’ are here!) But this isn't about here. It's about getting here.
    You see, at this point in life, I've sustained enough damage from my chronic illness and fractured vertebrae from medication side effects, that I need to wear a back brace and utilize a cane when travelling. Hardly earth shattering. And, at *cough* 51 *cough*, I'm still on the young side to be needing concessions. So why am I even bringing this up?
    Because it became an uncomfortable issue on a plane ride on the way here and I needed to handle it.
    The backstory you may not know is that I am over 6 feet tall. As a woman, I get looks. As a plus sized woman, I get whispers. And as a plus sized woman with a cane and a back brace, well… silence speaks volumes. And in the case of fitting into arranged seating? I just don't. But not because of my weight, because of my legs. And now, because of my brace.
    On an airplane, this comes into play because there is a thing called pre-boarding. It allows people with disabilities or injuries to board before others so they don't have to wait in line or climb over other passengers to get to their seats. I started using it on our last vacation. It helped so much with my pain. But his year, we hit a glitch: wheelchairs.
    You see, I can still walk well. So I do. Some are not as mobile and utilise wheelchairs to get from gate to gate or even to their seats. I was raised to play by the rules and wait my turn patiently…  Apparently, not everyone thinks the way I do. I was denied a seat I needed, by chronically ill women like myself, because they choose to save seats for family members who didn't need them. (Pre-boards get to bring one person to help them. Others sit elsewhere.) I was in tears.
   Thankfully, the son of the woman ahead of me switched seats so I could have the room I needed to stretch my back during the flight. She, however, complained loudly stating ‘it’s only an hour and a half flight, what’s the difference?’. She clearly saw both my cane and back brace. My issue was not invisible at that time. And I’m not disputing her need for pre-board. Her joints were a mess. I'm guessing RA. But she stood 5 foot 4, if that! Did she need the front row leg room and did I have the right to question that?
    The answer is yes, I did. And in the right situation, so do you. You see, I wasn't questioning her or her pain, as she so loudly did mine. I was asserting my need for the one thing I can't get anywhere else on that plane, leg room. While my reluctance to “cut” ahead of wheelchair users was due to respect, I was undermining my own need. A need they might not even have! So after speaking to the gate attendant and explaining my situation, I got seated first. I got leg room. And I got to fly without worrying that I would get to my destination in too much pain to enjoy it. Which is a right we all have no matter what our disability or illness is.
    This seems to be something most of us forget. Not just when travelling, but in everyday life. Do you need to be the one to do that load of laundry because hubby or soccer star needs a shirt tomorrow? Sure, I always did, until I couldn't. I'm asking you who are younger and hopefully healthier than I, do you NEED to? I NEED leg room to be pain free and get it now.
   But, I also PREFER a window seat. I don't need it, however, I sit there whenever I can. But if someone needs that window seat more than I do, I have no problem moving. Because we need to support each other just as much as we need to stand up for what we need individually.
    I don't want to ever cause anyone more pain than they already go through. I get it. I'm right there with you.

                So let's keep standing together, OK? Or sitting…  Whatever!

    

Monday, May 22, 2017



5 Reminders Of The Not So Helpful Support
Of Support Groups

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     Support groups can be really helpful when you have an issue you’ve never experienced before or you feel like no one around you understands what you’re going through because it’s just not that common! Support groups are also a great place to get tips for ways to talk to your doctors, alleviate side effects, and reduce pain because we can’t always think of everything ourselves. But it’s this wide open field of info sharing that can also be dangerous if you’re not careful. Here’s my point:
  1. There are millions of us out there living with chronic illnesses and chronic pain.
  2. There are new discoveries every day about the health benefits of this fruit or that vegetable.
  3. There are millions of people out there who want to make a quick buck.  
Personally, I see a perfect storm of get rich quick schemes targeting the chronically ill with products that will “heal” them or “eliminate” their pain. And they seem to pop up all over support group sites.Because that is where we are at our most vulnerable. We expect everyone to be truthful. We expect them to have our best interests at heart. And we expect them to be as caring as we are.
    But remember, these diseases are all different, they act differently on each body, and not everyone cares about everyone else. So here are a few things to think about.

  • Herbs are Unregulated. There are currently no standards for the amount of active ingredients in herbs that you buy anywhere. How they are prepared can result in higher concentrations within the same company. What helps you 5’11” friend can put your 5’ butt in the ED. Also, our American culture isn’t used to many of these remedies. Some recommended amounts that are harmless in other countries can really hurt someone here. Then there’s the fact that many herbals increase the effect of medications many of us currently take acting as if we took double or triple the dose. (Ie: St John’s Wort with Antidepressants) This can and has caused death. Consult your doctor and a nutritionist before adding that herb that cured Jane on Facebook. Please.
  • Vitamins are NOT More Equals Better. We now live in a society where we probably do not get enough vitamins from our food unless we are eating very carefully so the need for vitamin supplements is understandable, but just because extra Vitamin D is recommended for bone health, especially in cloudy climates, more can actually be toxic. The same goes for many minerals that are necessary for our health such as potassium. Necessary for our hearts and electrolyte balance, potassium toxicity mimics many symptoms of neuropathy we all struggle with. Any “cure” that recommends MEGA anything should be seriously questioned unless highly supervised by a professional. (Not just the author of a book who claims he’s/she’s one.)
  • Over The Counter Medications Have Specific Uses. Seriously. Read the package. Yes, they occasionally have alternative uses that have been figured out and are doctor approved. Benadryl is commonly recommended for short term use if you’re having trouble sleeping. BUT, by and large, the OTC medications out there are not meant to be used long term, in large doses, for off label uses. In other words, your run of the mill decongestant is not suddenly the cure for your Fibromyalgia and you should not start taking it daily against package directions without talking to a physician. One common decongestant, Mucinex, actually interacts with antidepressants classified as MAOIs and can cause real problems if not monitored by a doctor. (Even if Betty says she’s fine.)
  • Exercise Builds Up not Down. Many of us find it hard to exercise due to severe pain and exhaustion. Still, it is good to keep us mobile and flexible. But if a trainer promises you a cure by pushing you beyond your limits to reteach your body, it can result in much more harm by triggering flare ups and injuries due to all the extra swelling our bodies are prone to. There is no break down to build up in our world. Physicality is fine, but we need to protect ourselves from going too far. “Cures” that do not take that into account do not understand the illness they are trying to address.
  • There IS Such A Thing As Too Much Water. OK. As a Sjogren’s sufferer who drinks water all the time, this is tough to say. But it needs to be said. Yes, you can drink too much water and it can kill you. It’s called hyponatremia. Basically, you inundate your body with so much water, your cells flood due to abnormally low sodium levels. So, yes you need to drink. Most Americans do not drink enough. But be careful how you do it.

I know it sucks that there is no cure for what we have. It sucks that our bodies attack our own cells. And it sucks that people would take advantage of all this, and us, to make money. Just remember that if something seems too good to be true, it probably is, and extremes are a sure way even more hurt. But, we are strong in our circumstance and, ironically, we are always here for each other.

Saturday, May 20, 2017



So, What Do I DO ??

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        Recently, I noticed that when these stories get published on The Mighty pages, there are comments that we, as authors, can see. (I know, right? You’d think I’d have looked for that immediately!)  In response to an essay I wrote about things I don’t admit on my bad days (https://themighty.com/2017/02/bad-pain-day-struggles/) someone left a response that I hadn’t previously thought about.
    
    Basically, I was asked what can someone do to support a person dealing with chronic pain.  
    
    Seriously. And in thinking about it, I realized it’s something I’ve never been asked before. After 21 years of being chronically ill within a marriage, what I came up with surprised even me.

  1. Give Me Space.  I know that doesn’t sound helpful, but sometimes it’s exactly what I need. This disease is relentless. And it’s progressive. Which means that every time I think I come to terms with it and how I am feeling, it changes and I have new stuff to deal with. It makes me angry and it makes me cry and sometimes I don’t even know how to help myself so I definately don’t know how you can help.

2. Give Me A Hug. Yeah, coming right ‘after give me space’ this makes no sense
whatsoever. BUT… a hug can go a long way. You see, I get that you want to help
me and I get that you don’t want to see me in pain. Hell, I see the pain in your
eyes when you look at me this way and all I want to do is make it go away and I
can’t, so how can you? And we both know words don’t help when I’m like this.
But a gentle hug says so much more than any words ever could.

     3. Get The Kids On Board. OK. So this is a tough one if not impossible, but I’m
          going to say it. Most of us with Chronic Illnesses are women, so I am addressing
          this as a mom. I just physically cannot do the stuff I used to. Some days, just
          vacuuming is an issue. So any day you can get the kids out of my hair is a
blessing. Be creative and make up quiet games or get them to help make dinner
          or clean up. If they’re older-like my actual children-remind them that I seriously
          can’t carry their laundry up the stairs and lizards can survive on one day of no
food if I forget to feed them because you work out of town and… I’ll stop here. And ladies-don’t expect perfection if your guy is helping out here. There is none in the world of children or chronic pain. He’s trying.

  4. Help Me Find My Bliss. Going philosophical here, but it’s not as highbrow as it
      seems. Just talk to me about my pain. Talk to me about what I need in reference
          to my pain. The sweetest thing my husband ever did for me was to purchase a
          personal TENS unit (Electrical muscle stimulation) to help relax my muscles. I  
          love it! (That and the nightly backrubs when I was overexerting myself caring for
          my  mom) Find out what works and buy it, do it, commit to it. It’s hard and  
          disappointing when I’m alone in trying to make a change that I know will help
  reduce my pain.

5. Talk With Me. Ask me how I’m doing. And listen to my answer. Then ask me
     how I’m REALLY doing because you know I lied to you when I said I’m ok the
     first time. I know you’re tired too. And I know you work hard. You may be the
     only one actually holding down a job. I don’t want to add to your stress. Talking
     with me lets me know you want to know what I’m going through even though
     you can’t fix it. And also know I don’t expect answers. Maybe just a hug...

6. Appreciate Me. Understand that the things I mentioned in the beginning are
    always true. And it affects me mentally. I feel like a burden more than you will
    ever know. Becoming chronically ill, autoimmune, disabled, a pain patient, any
    or all of the above while in a loving relationship changes everything. I know it’s
    not what you signed on for no matter what you say. Those little romantic
    gestures other women are so nonchalant about can change my whole week.


But the most important advice I can give is to go with your gut! Go with Love. It always works!