Taking Back My Life, One Country at a Time

I did it!  I went to Scotland for two weeks, not only survived, but also had a good time.  Of course, it was different from traveling when I was healthy, but it was a giant triumph.  Traveling is one of my greatest passions and knowing that I can still do it gives me something very powerful to hang onto when everything else is falling apart.  Not only did I get to see Scotland again, but I’ve regained some meaning to my life.  Naturally I’m already planning my next trips, yes the ‘s’ is intentional.  With that in mind, I’ve put a lot of thought into how best to travel with a chronic illness.  What I did right this last time and what I can do better the next.  Since I want all of you wonderful people out there suffering a similar fate to have the greatest advantage possible in any endeavor taken on with a chronic illness I’m going to share my findings, so you don’t have to make my mistakes.

sexy kilt

Scotland, I hear Scots live there.

Plan, Organize, Research, and Plan Some More

I did more planning, organizing, and research for this two-week trip than I ever did for moving to a foreign country.  Mind you this had nothing to do with setting an itinerary or buying tickets to this or that.  The only things we had set ahead of time were places to sleep and the rental car.  All of the planning and organizing and researching had to do with my illness.  I researched the medical system and how a foreigner would access it. I looked into what kind of handicap facilities they had available; foreign countries don’t have the ADA, so you need to be self-sufficient. You have to consider stairs everywhere.  I had to make sure my medications were going to fill at the right time so I would have enough for the trip and extra just in case.  I checked airline rules to make sure I could take all of my medical devices in my carry on.  Anything I wasn’t sure of, I looked up and printed out, because…brain fog!!  Traveling with a chronic illness is a lot more complicated, you can’t just throw some clothes in a bag and walk out the door.  You simply wouldn’t survive. Also, the better you plan for your illness the more comfortable you will be, the better your trip will go.

buried under paper work

Packing

Make sure you get luggage with wheels, preferably four wheels.  Don’t be afraid to ask friends and family to borrow anything you don’t own that will make traveling easier. Chances are they will be glad for the opportunity to help you. First you want to separate your stuff into two categories, items that you can’t go without like your meds, any medical devices, any electronics, camera, phone, wallet, passport, teddy bear, etc. This is your carry on.  Never let it out of your sight. The other stuff, though it would be annoying, is possible to replace.  When you check luggage, there is always the possibility it will go somewhere else, so keep that in mind.  When you are chronically ill it’s difficult enough dragging yourself around, much less a bunch of stuff. With this in mind, pack LIGHT.  Pack layers and don’t pack multiples of anything.  Don’t just pack three pairs of pants, they should each have a different use.  For instance, I packed a pair of scrubs pants, which feel like PJ’s but look decent, a pair of tactical pants (which are heavier, have lots of pockets, look like cargo pants, but have a stretchy waist, I’m all about comfort) and a pair of sweat pants for sleeping. I packed 2 T-shirts(thick and thin), long sleeve shirt, sweat shirt, sleeping shirt, and a pair of silk long johns. Also, keep in mind you will be wearing one of these outfits on the plane, wear layers because sometimes planes are hot, sometimes cold and go comfy!  The only thing you can’t pack enough of are underwear and socks. It is always helpful to have some fresh wipes or even baby wipes in both your carry-on and your checked luggage so you can freshen up before the plane lands, it will really help you feel more alive to just clean your face and hands.  Having them on your trip you can use them after long days just to quickly clean off the day and for days, you don’t have the energy to shower.  Another great product for rough days to get the oil out of your hair is this dry shampoo.  It is amazing,  leaves your hair looking like you are fresh out of the shower and even works on my hair which goes down to my waist.

Other things that were immensely helpful, I bought a good water bottle that could do both hot and cold drinks.  This was fantastic for having tea or water throughout the day.  I also packed a ziplock full of good black tea bags and another with Splenda packets, so all I needed was hot water and I could have my tea anytime.  You could do the same with instant coffee, Starbucks via is pretty decent.  It’s a good idea to be as self-sufficient as you can if you are going to a different country.  Another thing that is a traveler’s best friend is ziplock bags, there is no end to how useful they can be from holding things that might spill, to keep food fresh, to just keeping you organized.  Pack both the little and the big ones a handful of each.  Other countries run on different hours and sometimes you can’t find a restaurant and sometimes you’re traveling on a budget.  A great trick is to pack a small collapsible cooler, and a couple utensils, then hit a grocery store and grab some cheese and meats and crackers and bread and munchies and use the cooler to store the perishables.  I survived a lot on caffeine and sugar.  Check to see if there is anything specific you should plan for in the country you are headed to, for instance, Scotland has midges, which are like mosquitos only half the size and twice as annoying.  Their bites are terribly itchy and when we went Scotland was experiencing a bit of an outbreak, the only thing recommended to keep them away was Avon Skin So Soft, so that is what I packed. Finally, pack for emergencies, small first aid kit, matches or lighter, safety pins, sewing kit and a utility knife (if it’s legal in that country, it’s not in the UK).

KONICA MINOLTA DIGITAL CAMERA

My laptop didn’t seem this heavy yesterday!

Save, Beg, and Plead

While, yes, we have to save our pennies to travel just like everyone else, we also need to save up some meds.  I’m not talking about your daily meds, I’m talking about the meds that control your pain, that help you sleep, that give you energy, etc.  Anything that could give you an advantage on your trip.  From the second that you have decided to travel you should figure out what is going to be useful to you and start  putting aside a few pills each month.  Just use one of your old prescription bottles like a piggy bank and whenever you don’t use your full dose put the extra pill in the bottle.  Out of sight, out of mind and it will build up, even if it is only a few pills a month, it worked for me.  I realize you might be thinking you won’t want to be dopey while traveling, and this was true for me.  For the most part, I took my usual dose or less while traveling, but I was no end of grateful for the extra meds when I was paying the price after the trip.  Also, you’re going to be pushing your body, so you are going to want to pack meds for every contingency.  Pack vitamins to help you out, pack allergy meds, eye drops, cough drops, nasal spray, and cold meds, just in case.  I didn’t and needed them ALL.  Also, tell your doctors you are going on a trip, they may disagree with you, but ignore them, what do they know!  Very little, we know this for a fact! The good ones will know it will be good for you.  Ask those to help you out with a few prescriptions.  Sleeping through the flight will really save you wear and tear, my pain doctor gave me some Xanax and boy did that knock me out.  Also, there is a medication called Provigil or the newer one is nuvigil, it gives you energy.  I used to take it when I worked so I had some left over, it really really helped.  You can ask your GP for just enough for your trip. I felt like I was carrying a pharmacy and probably looked like it too, but there wasn’t a single med that I packed that I didn’t use and a few I had to buy.  So in this case, you can’t over pack, but if at all possible, consolidate, all those bottles take up a lot of room.  I ended up pulling off labels and putting multiple meds and their labels in one bottle, just in case customs got suspicious.  I mean, I did have a fortune in pharmaceuticals in my bag.

 

french

You have this, you can practically taste the wine.

 

Choosing a Traveling Companion

The reality is no matter who you are, what your health, your traveling companion can make or break a trip.  Before I go any further I do want to say that I fully believe that we capable of traveling alone.  It will take a little more courage, but it will also relieve some of the pressure of trying to keep up with someone else, especially someone who is healthy.  As for a traveling companion, you want to try to find someone who matches the way you like to travel.  If you like to make an itinerary and stick to it, then you should find someone who likes schedules.  If you like to just go with the flow and let things happen then find someone who matches that.  When you are chronically ill you need to be extra super double dog careful who you travel with because you need someone who you can not only basically live with for however long your trip is, but also someone who is able to deal with all the impacts your health will have on the trip.  I don’t mean you need to find someone to take care of you as you travel, but you do need to find someone who is understanding, compassionate, and most of all capable of communicating.  If you find someone that can just communicate, then they can just say to you, “I really want to hike up that mountain, how can we make that happen?” and you work it out.  Likewise, you’ll be comfortable saying, “I’m exhausted, can we check in early and I’ll nap and you can take the car.”  Also, when you are getting along and having fun you can chat at night about the day, unwind, have a drink, have a laugh, really, your companion will make or break it for you.  I highly recommend talking at length before even thinking about traveling with someone to make sure that you will enjoy each other and be able to communicate your needs.  Otherwise, you’ll wish you’d gone alone. (Roll cursor over pictures.)

 

Zen and Have Fun

You have spent a ton of time researching how to deal with all the worst case scenarios.  You have packed with your illness in mind and all the worst case scenarios in your mind.  It’s not surprising that you are probably feeling anxious about traveling.  Now you need to remind yourself that all this work you have done is so that you will have the best trip possible and that even if something does go wrong you will be prepared and it will only be a minor bump.  Spend some time looking around at the fun things to do and see where you are going.  Imagine yourself there having a great time.  I was worried that I would be frustrated that my illness and lack of energy would stop me from doing too much and I would get frustrated.  I decided that just being in Scotland, wherever I was, I could sit in a pub or coffee shop or even a meadow and watch the world and I would be happy.  This was true, I was happy just to be there.  Everything was beautiful.  I went on short walks by myself many times and just reveled in the fact I was ‘home’ again and it was glorious. We also use Airbnb and had some fantastic experiences.  The unique thing about Airbnb is that you can not only book a lovely place to stay but if you really read the reviews and you look out for the designation of super host then you are also booking some fantastic company.  When I lived in Scotland it was the people, the culture, the way they thought and treated each other that made me love the country so very much and Airbnb gave me a way to spend my vacation with the Scots, ones that were eager to meet and talk to travelers.  We sat and had tea or wine and had long talks about everything from the arts to politics to higher education to the differing medical systems to how different cultures deal with grief and round again.  The hosts really went above and beyond to make us feel welcome and comfortable, gave us rides, gave us meals, gave us information, gave us their time and companionship, and had lovely animals to cuddle up with and their homes were beautiful and the land was stunning.  Not only was it economical, but it’s so much more of an experience than you will ever receive in a hotel or even a B&B business.  If you ever go to Scotland I  can’t recommend Pat and Fedor in a remote and stunning area between Glencoe and Inverness and Karen and Elaine just outside of Glasgow enough.  They were the highlights of my trip and you can bet when I go back to Scotland I will be staying with them.  They better watch out, I might just move in!  You will enjoy yourself too, all you have to do is allow yourself the freedom to be happy with the simple things.

travel

 

 

Posted in humor, Scotland | Tagged , , , , , , , , , , , , | 3 Comments

Why Should I be Grateful?

Most days this is an impossible question to answer.  Not just for someone like me.  We all have our struggles and it’s hard to find that proverbial silver lining.  Especially when we are bombarded from every angle by news of murder, racism, animal cruelty, human cruelty, war, and so much more.  Still, when struggling with chronic pain and illness it’s very hard to even reach for, much less find what is actually good in your life.  Living hurts, it’s a constant struggle, and it seems that the world as a whole is bound and determined to make it harder on us.

It can be tough

It can be tough

The last few months I’ve had some pretty rough experiences.  Instances where both friends and strangers said and did things that were extremely painful.  I’ve always been pretty sensitive, but with this illness I find that being attacked or mistreated because of it really strikes me in a way in which I have no defense against.  I don’t want to be sick.  I don’t want to be in this position and being pinned to the wall for it is just a knife in an already open wound.  I can’t fix it or change it.  I got nothing.  So instead it throws me backwards in my whole coping process to the kicking and screaming and gnashing of teeth. It’s not productive at all.

Yep, that's about right.

Yep, that’s about right.

So, last time I talked about control.  I can’t control other people. Obviously. I can control the people who are important to me.  I can pay attention to how people treat me and follow a path to a place where I will spend my time with people who treat me well.  This got me thinking.  They say that practicing gratitude can greatly affect your own perception.  Our brains work kind of like a computer, where the more often we light up certain parts of our brains the easier it is to access that area.  So, when we take the time to think about what is good in our lives, even if we don’t find anything, just the act of looking around, it lights up the part of our brain that has the good stuff.  If we make a habit of taking a minute a day of looking for something good it will make it easier for us to spot good things in our lives.  At least that is what all the books say, but I will admit when I have practiced gratitude, even when all I could come up with was my fuzzy blanket, it did make a small difference.

Just a little bit.

Just a little bit.

Last night a series of small things really got me thinking about what is good in my life and though my life is a constant struggle, I realize now that there are some amazing reasons I am still fighting and they deserve to be recognized.  The first is my big brother, he does so much for me.  He is the one that takes me to all the concerts that always give me something to look forward to, something to live for.  He finds the concerts, gets the tickets, drives me there and I always know I’m safe with him.  If anything goes wrong he will take care of me, but he magically walks this line of not treating me like I’m an invalid, but also making me feel like I’m not being pushed to do more than I can do.  He is always great company, fun to talk to, full of stories, intelligent conversation, and ready to laugh and have a good time.  Sometimes he stops by just to take me out to lunch or dinner, or brings by a sandwich or coffee and sits and chats.  He also did something really amazing by giving me some purpose, he needed some help with the social media side of his work and asked if I was interested.  It’s not hard work, it’s actually pretty fun, I got to learn a lot of new skills and it’s something that doesn’t have to be done on a deadline.  I can do it when I feel up to it and not do it when I don’t.  It makes me just a little bit less of a waste of space and I get to help him in some small way, which is nice considering all he does for me.  Thank you, Mike, you’re an amazing person and even better brother.

You're my hero.

You’re my hero.

Then there are my parents, who, of course, desperately just want to fix it, but since that isn’t really in the cards they try everything they can to help.  My Mom helps me keep track of my doctors appointments and keeping my medications refilled, neither of which are small jobs.  Sometimes she goes to the doctors with me and sometimes I go to the doctors with her.  She understands a lot of what I’m going through because a lot of what I have is hereditary.  We can commune over the evils of showering and agree that a big day is a doctors appointment and lunch.  We both have a fine appreciation for naps, it’s nice to have someone around that gets the physical struggles.  She tries to keep me fed and I say try because I’m not a very good eater, but without her I would be living on cereal and peanut butter and jelly.  She always greets me with a cheerful “good morning,” even though my answer is usually a mumble.  She is happy to see me, happy to have me, and shows me she loves in a million small ways.  She is beautiful and I wish she could see herself through my eyes.  Thank you Mom, you’re my heart.

Purrr Love

Purrr Love

My Dad really wants to fix it.  I know that he struggles with feeling helpless in the face of have no ability to do so.  Still he comes down and checks on me all the time.  Asks me how I am doing and is always, always hoping for improvement, though I can’t give it to him.  He sometimes keeps me company during dinner. This is different because I eat lying down, so there is no all sitting at the dinner table. He randomly takes me to lunch or brings back a rootbeer float and often comes down just to chat. He always asks if there is anything he can do. He doesn’t know much about medical, but is willing to do or try anything I can come up with.  I told him about health advocates and within a couple of days he found me one.  That’s the way it works with him.  Just knowing how much he wants to help is enough for me.  On the rare occasion I can think of something he can do to help, it’s usually done within a day.  He’s a stud that way.  All three of us are trying to navigate the insurance and medical bills, but that’s a constant uphill battle no matter who you are.  I wish that I could give him something to fix, something that would somehow make it all better, but then if I knew that we wouldn’t be in this situation.  Still, what I think really matters here, no matter what he does or doesn’t do, is how much this shows  he really loves me.  Thank you Dad, you’re a wonderful man.

I'm so proud you're my Dad.

I’m so proud you’re my Dad.

I have friends that I don’t see all the time, but check on me when too much time passes just to make sure I’m alright.  It’s a little thing, but it means a lot.  I have other friends I know I could call in the middle of the night and they would help no matter where or when, no questions asked. I have friends that always bring a smile to my face when we are together and sometimes even just thinking of them. I have a small group of friends that suffer from similar illnesses and in them I find understanding, empathy, kindness, and a willingness to help anyway they can even though they are suffering terribly.  I have a friend that trusted me enough to ask me for a favor.  Even though she felt she was putting me out, I felt honored that she knew she could ask and that I would come through for her.

Friends are the best.

Friends are the best.

Finally, last night we went to a concert, but stopped by a party at a friends house for a few minutes on the way and I was greeted with the warmest hug from another friend I don’t see often.  It made me realize that this was another person that has always treated me with nothing but kindness and warmth.  Another intelligent, talented, successful person in my life that was offering amazing things.  Someone I should draw closer.  At the concert my brother had invited a friend I never met before, he was another intelligent, successful, charming, fun, and witty individual.  We all talked quite a bit over the course of the night, stories, economics, politics, traveling, you name it, we probably hit it.  I had a great time and at the end of the night a certain topic came up and I asked for a referral and instead of a referral he is actually going to make something happen that I’ve wanted for several weeks now.  We are practically strangers, but he is doing me a great kindness. I’m pretty blown away.

Holy Crap!!!

Holy Crap!!!

My life may not be the one I wanted, the one I worked hard to get and it certainly isn’t easy, but I am grateful to those in my life who help me fight, give me reasons to smile, and do so much for me.

You guys are awesome.

You guys are awesome.

Posted in anger, anxiety, caring, cats, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, conditions and diseases, coping, depression, disability, family, fibromyalgia, friends, friendship, health, helping, hope, humor, invisible illness, love, lupus, Medicine, struggles | Tagged , , | 6 Comments

Control over our lives? We have no control. Or do we?

It’s been a really rough couple of months and while I have sure spent my fair share of time wallowing, I’ve also managed a thought or two.  I’ve come to the conclusion that when you are chronically ill or in pain you lose a lot of control over your own life.  This presents itself in small ways in social situations where we are invited to something a week from today and we can’t really say yes.  Not because we don’t want to go.  We definitely do.  We can’t say “yes” because we don’t know what our body is going to do to us a week from today.  Honestly, we don’t really know what it’s going to do 45 seconds from now.  It’s like we are subject to the change of invisible winds and try as we might to do everything right, one shift in direction of those winds and the whole house of cards we so carefully assembled comes crumbling down.

Man, I did it just right, why????

Man, I did it just right, why????

Of course that is the little stuff.  Many of us struggle with household chores. I know I’m not alone in just skipping dinner because I simply didn’t have it in me to make it or even pour myself a bowl of cereal.  Most of us can’t work, we did when we were healthy, but it was one of our many losses.  So we feel like we have no value in this world.  We often have to stare at our dirty houses, that drives us insane, because we can’t do anything about it. We struggle with terrible guilt of being a burden on others.  We try to explain this life to the ones around us, the loss, grief, depression, loss of self, loss of control and so much more, but people can’t really wrap their heads around it.  They aren’t being mean, it’s just so far from their experience that it’s hard to relate.  In most cases people get sick of your limitations and move on with their lives.

Although our houses do NOT look like this. It feels like they do in how overwhelming the smallest task feels.

Although our houses do NOT look like this. It feels like they do in how overwhelming the smallest task feels.

None of this is in our control, their isn’t a single thing we can say or do “right” to change any unwanted outcomes.  If we had control over our illness and pain then we wouldn’t be in this position and we could go live a normal life.  No counting spoons, pouring pills, waking in pain, making daily choices between things normal people don’t even think about like a having breakfast or doing your hair.  We live our lives walking on a balancing beam, always trying to make sure that you have enough meds in your system that your pain isn’t of control, but not so much you can’t think. You only commit to things you absolutely need, which is pretty much doctors appointments and on those days you do nothing else.  You carefully space out basic care like showers from any other activity because one shower can put you down for a day or more.  Still, sometimes, many times, it doesn’t matter a bit if you did absolutely everything right.  Our body is in control, not us.

Something else is pulling the strings and it has a strange sense of humor.

Something else is pulling the strings and it has a strange sense of humor.

So, what do we have control over?  It feels like we control nothing, like we are just being dragged along on some demented version Mr. Toad’s Wild Ride and it is different than fun. I actually had to think for quite some time for something that was completely within our control and I was  surprisingly victorious.  The way I figure it, the only thing that we truly control is our reaction to all of this.  Everyone just hold back that groan a second.  You should know me at least a little by now.  I’m not here to tell you that a positive attitude will change everything.  That’s a load of crap and I’m not in the habit of pedaling lies.

I'd make a terrible politician, I'm entirely too straight forward.

I’d make a terrible politician, I’m entirely too straight forward.

What I mean by you being in control of your reaction is that as far as I can tell, that’s the one thing we can actually own.  Mind you I am not discounting all of the mental, emotional, and psychological impacts of chronic illness.  We fight grief, depression, and in many cases suicidal thoughts and actions.  So, even here, there is a fight, a really big one.  I’m not discounting it at all.  However, in the midst of all my depression, with multiple situations and issues swirling through my mind, I kept asking myself, “Yeah, but what can I do about it.”  At first it was a helpless, useless question where I had no power.  Interestingly, over time I actually started probing for an answer.

Maybe there was an actual answer.

Maybe there was an actual answer.

I came to the conclusion that I had control over my response.  Even though I face these problems with the depression, grief, anger and so much else always going on in my head.  It would be like a healthy person trying to take on major problems after the worst week of their lives.  It’s going to be a little more complicated.  I think the trick is to take your time, wait until you’re calm, and then work your way through it.  Lately I’ve been struggling with severe depression, that trial was just the last straw.  So for weeks I’ve been asking myself “What can I do?” at first helplessly and then seriously.

question

I have been doing the same things and getting the same results and I’m not happy with them.  I’m not less of a person because I got sick and I don’t deserve to be treated that way and neither do any of you.  However, I have tolerated being treated as such. I can’t keep doing the same things and expecting different results, that is the definition of insanity.   I’m going to move slowly and carefully so can do my best to avoid mistakes, but I’m going to suss out what I want my life to look like and then figure out the steps I need to take to make those changes happen.  I’m controlling my reaction, I’m making choices that will over time change my life, in small, but I think significant ways, this won’t change my health status.  I plan to do it slowly so I don’t feel any pressure and I can celebrate the tiniest of victories.

perspective

I’m still terribly sick, had the same cold since early September.  I’m almost done with my second round of antibiotics and don’t feel that much better.  Sure, I’m miserable, my body hurts, nothing is working right, and I can’t keep my eyes open most of the time, but I’m absolutely in love with a mug I just got, it’s just the right size, shape, and color. It’s awesome!  Each morning I look forward to hot tea on my sore throat, in my new mug all wrapped up in my blanket and every morning for the briefest of moments, this makes me happy.   I think a big part of taking back control is just making choices, even small ones and realizing that they are yours.  I want to make more choices and be mindful of my reactions so that I can find joy, even in the dark.

It's a new path, I'll give it a go.

It’s a new path, I’ll give it a go.

Posted in anger, anxiety, caring, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, conditions and diseases, coping, depression, disability, fear, fibromyalgia, hope, lupus, Mystery Illness, pain management, rheumatoid arthitis, suicide | Tagged , , , , , | 12 Comments

The Worst of the Struggles

I’m not doing well.  Really, that’s a huge understatement.  I don’t have any clever sentences or pieces of humor to lighten this terrible disease we struggle with day in and day out.  Still outside of personal struggles with our symptoms, pain, fatigue, depression, limitations, grief, loss and so much more the hardest thing to deal with is other people.  We have to fight with our doctors and insurance companies for help, with our friends and family for understanding and empathy and the world at large for a little bit of room to move not like a “normal” person.  Even worse is when our illness is used against us, when we are treated like criminals, drug seekers, malingerers, liars, and so much else.

The disability hearing was emotionally painful beyond words.  It was the sum of all those years of everyone from doctors to employers to strangers to friends accusing me to my face that my illness was nothing more than a farce and if I just tried harder I could go back to being a normal person.  It was devastating.  I would give anything, anything in this world, to have my life back and suggesting otherwise, well, it’s just a button I think that everyone single one of us can’t handle being pushed.

This is a terrible life, most of us don’t want to live it at all.  However, we do.  We fight, we fight in the hopes of getting better.  We fight in the hopes of just finding a way to balance the life we are leading now.  We fight for the little moments of joy that are so very rare.  We fight to find meaning in the darkest of places.  Still life throws us things that make this fight harder and being attacked for being sick is the hardest for me to overcome. It happened once a long time ago, leaving quite the scar.  It happened again recently where my limitations were used against me.  I find it hard to describe the feeling of helplessness and betrayal.  I don’t think the mental repercussions were considered. That’s this life though, right? You don’t get it unless you’ve got it. Between the two I’m done.

I work and I fight and I work and I fight and I work and I fight and it feels like I just can NOT catch a break.  Maybe it seems like I’m complaining about a few little things, but really, I’m just not willing to list all the fronts I’m battling at the moment.  I’m tired.  I’m sick.  I’ve had enough.  I need a break.  Don’t we all?

Posted in humor | 11 Comments

I Just Had My Disability Hearing and I’m Sending Them All My Future Therapy Bills

When I was healthy people who were supposed to help me when I was sick pretty much did.  If I came down with something I just called the doctor, got an appointment, they asked questions, checked me out, probably prescribed something, I went on my merry way and got better.  Never once was I treated with such incredible cruelty, suspicion, and indifference as I have since I’ve been severely ill.  The time when I needed the help the most is when I was treated like a criminal, a drug seeker, a mental case, and in a startling number of instances less than human.  That makes no sense!  In the moment when you are desperate for our medical system to show a little humanity is the exact moment they suddenly turn into sociopaths.

Never has this been more evident than in my disability hearing today.  Not only have I already been denied three times most likely because of my age and nothing more.  Not only have I been fighting with the system for this for two and half years.  Not only have I struggled with medical bills, doctors appointments, insurance companies, pharmacies, medications, side effects, on top of being sick.  But it seems to me that everyone, EVERYONE has forgotten that I am NOT, in fact, asking for a hand out.  I am asking for MY money back.  Since the day I first started working this government has garnished my wages for social security and disability.  I have worked from a very young age and believe me, if they just wanted to return to me the exact amount of money that they have taken from me over all of these years with the standard interest accrued over that time, because I am done giving this government zero percent loans, that would be perfectly fine with me.  The truth is the government takes these taxes and hopes you die before you can get social security and makes it impossible to access disability, but let’s not wander into politics.

The hearing today was downright traumatic.  My hearing was held in Nevada and I had Janice E. Shave for a judge and I have no idea if this is normal, but she was downright mean.  She interrogated me, it should have been a darkened room with a single bright light shining right into my eyes.  She could calmly unpack all of her torture devices while she asks me questions.  It was one of the worst experiences of my life.  She asked if I did my own laundry and I said no.  She asked why not. I told her that lifting and bending are the most painful things you can do with a bad back.  She asked if I changed my own bed. I said no. Why mot? Again, lifting and bending are the most painful things you can do with a bad back.  Keep in mind that her voice was somehow consistently superior, suspicious, and scornful.  As if it was a foregone conclusion that I was lying and I best come clean before things turned nasty.  Next she asked if I drove. I told her that I drove to doctors appointments.  She then asked how exactly it was that I couldn’t do laundry or change my bed, but I could drive myself to a doctors appointment.  The tears started, but I explained that when you are chronically you have limited physical resources and life is all about choices.  So if I have to choose between wearing dirty clothes and sleeping in dirty sheets and trying to get better, I going to try to get better.  That was just the first five minutes, that hearing was the longest half hour of my life.

The good news is that their vocational expert said that there was no job that I could perform, skilled or unskilled, sedentary or not.  Additionally, my lawyer said afterward that he doesn’t see how they could deny me and if they do they will appeal it immediately, which he explained is something they only do on winning cases.  So, most likely I will get it.  I won’t find out for one to two months.  I just don’t understand why, when these people (doctors, insurances, pharmacies, disability) are supposedly in a helping profession they would compound the misery of being severely ill with cruelty?

Now I just need a lot of hugs to recover from that evil woman.

What a day!

What a day!

Posted in anger, anxiety, caring, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, depression, disability, disability hearing, Doctors, fear, fibromyalgia, struggles | Tagged , , , , , | 11 Comments

The Oxygen Mask Rule

You know that really long boring safety speech we all pretty much ignore before we take off for any flight?  Remember how they always say to always put your oxygen mask on first before helping anyone else? The reason is simple: if you don’t have oxygen yourself you are pretty useless to anyone else.  While all of this speech seems pretty self explanatory in terms of what to do in case of an emergency, what you probably never realized is that they were giving you a priceless piece of life advice.  You must put the oxygen mask on yourself first, before you can help anyone else.  In other words, you have to take care of yourself before you can really help anyone else.

oxygen mask

Put your own on first!

This is a basic truth for everyone, healthy or sick, that every single one of us tends to forget.  We get so caught up in keeping all our balls in the air that more often than not the ball that is our own welfare is the very first one to get dropped.  We sacrifice our sleep, our health, our energy, even our mental health to keep the little things, that seem much more important than they really are, going.  We do this time and again until ultimately we have neglected ourselves to such a point that all our balls come tumbling down right on our head.

There is collateral damage when everything comes tumbling down.

There is collateral damage when everything comes tumbling down.

Why do we do this?  I suspect that we forget that we actually DO need to take care of ourselves.  We believe that somehow, magically, by keeping up with everything else, we are taking care of ourselves.  It’s not true.  At all.  Even a little bit.  No matter how much you would like to believe otherwise.  The truth is that we actually need to take time and care for ourselves.  That putting ourselves first should not be a rarity, it should be a consistency.  If you don’t put on your own oxygen mask, you simply can’t do anything else.  Try as you might.

It's not even a little true? :-(

It’s not even a little true? 😦

This is true with chronic illness especially.  We deal with so many challenges day in and day out that we can easily get lost in the minutia of keeping track of our medications, our doctors appointments, not upsetting our bodies, while still keeping up with our relationships, housework, the kids, the bills, in some cases our work,  and we absolutely forget that we need to do something just for us. Plus because our health slows us down we always feel behind, and we tend to feel guilty for taking any time we don’t absolutely need.  Truth is, we absolutely need self care.  Something to make us happy.  Something to calm us.  Just a little time every day to do for ourselves whatever it is that we need.  No one but us knows what we really need and no one but us can really give it to us.  So it really is our own job to meet this need.

Try a few quiet moments somewhere like this.

Try a few quiet moments somewhere like this.

I know that some of you might think that what I’m talking about is being selfish, but it’s not.  This is the opposite of selfish.  When you do right by yourself you can also do amazing things for other people, because you are coming from a more stable and compassionate place.  You have so much more to offer when you are mindful enough to take just a little time out of every day to take care of you.  If you do this, bit by bit, you will find that it is an easy habit to form and the pay off is exponential.

This looks inviting.

This looks inviting.

This approach is also a great tool in relationships, something that suffers terribly when you are chronically ill.  There is such a break down of understanding, some much difficulty in understanding each other, and often there is a lot of resentment on both sides.  All of which is very understandable, being chronically ill and those of you living with us have a rough life.  It’s a huge challenge and everyone involved needs to acknowledge how it effects them and take care of themselves. You can use the term oxygen mask as an easy way to communicate that you have reached a point where you need to take care of yourself right now.  Whether you are having an intense conversation or out in a social situation it’s a quick way to call a time out or communicate a need to leave.  I have a friend that designated an oxygen mask day every week in his relationship, where his partner was to put herself first and communicate any issues or needs regardless of what she thought he might need at that moment.  It worked great.

Sometimes this, an empty house and some seriously off pitch singing is better than any therapy.

Sometimes this, an empty house and some seriously off pitch singing is better than any therapy.

Really, You Deserve It!!!! Take Care of You! Thems the rules!

Everyone gets caught up in the details of everyday life and it’s human nature to put ourselves last.  To forget that we need some TLC too.  So take a moment, consider your own needs, put them first every once in a while. So go ahead, take that bubble bath, take an hour to read, watch you favorite show, have that glass of wine, or piece of chocolate, get a massage, color in a coloring book, they have ones for adults now and I’m looking into it for myself.  I can’t think of anything more relaxing than a good set of colored pencils and an intricate design and at the end you have a piece of art you created.  Just do something for you.  Something that will make you smile, even if only for a moment. Designate days with your partner to discuss your hurts and worries, days where you each put yourself first, you’ll be surprised at the result.  It’s not selfish.  It’s the kindest thing you can do for yourself and everyone around you and all of you deserve it. Trust me!

Really, You Deserve It!!!!  Take Care of You!  Thems the rules!

Really, You Deserve It!!!! Take Care of You! Thems the rules!

Posted in anger, anxiety, caring, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, conditions and diseases, confused, coping, depression, family, fibromyalgia, friends, friendship, health, helping, invisible illness | Tagged , , , , , , | 3 Comments

What does it mean to live?

Now I’m not asking what it means to be alive.  Then we would get into arguments about plants, fetuses, the whole Terry Schiavo thing, and even the argument about the potential for life being enough.  This discussion is going to be esoteric enough without jumping down that particular rabbit whole.  I want to know what it means to us as human beings to live as opposed to merely surviving.  This is important because this is a questions that people who are chronically ill and in pain ask themselves on a regular basis.

What does living mean?

What does living mean?

Still living is hard to define because it means something different to everyone.  Some people live with a bunch of books or video games, while others can’t imagine life without dance clubs and big parties, or others live to explore mountain tops and vast oceans.  No one is wrong or right in how they choose to live, but what if that choice was taken from you?  I was a mountain tops, oceans, motorcycles, dancing, travel, endless adventure kind of girl, until I got sick.  Now my life revolves around medications, my bed, my couch, and endless doctors appointments.  When I do brave a social situation I listen to other people talking and I can no longer relate.  Other people talk about work stress, their latest adventures with friends and family, their plans for travel, their relationships, and general gossip.  I know that for a while I had a life like that, but I remember it in the way that we as adults remember childhood.  We know we spent many years with no worries, nothing to do but play and maybe go to school.  However, at the time that was all we knew and we didn’t understand that it would one day end. So we didn’t know to appreciate it. The same thing happened with my health.  I had no idea it would suddenly go away and so I didn’t appreciate what I had.  Now I don’t actually remember what it’s like to not be in pain.  Intellectually I remember a time when my worries revolved around doing my job well, paying my bills, keeping the house clean, keeping food in the house, keeping up with the laundry, maintaining my social obligations, having all the fun I could manage and sometimes getting some sleep.  Sadly that memory is just as far away as my days in preschool.  I know it happened, but I can’t touch it.

My old life

My old life

So now my life of places to rest with ice packs and heating pads, medication doses, countless doctors and painful treatments has me wondering, is this living?  Is placing one foot in front of the next, day after day really a life?  My answer is a resounding, “NO.” This is not a life, this is just surviving.  I breathe in and out, my heart beats, and I go through the motions.  The things that made my world worth living in have been stolen.  One foot in front of the next.  When I first got sick it was easy to fight because I believed that we just needed to figure out what was wrong and everything would go back to the way it was.  One foot in front of the next.  It’s been nine years and I have since learned that regardless of what any doctor says that I should not get my hopes up, because when they fail to find a diagnosis the fall is that much further.  One foot in front of the next.  Still I spend my days researching what has been diagnosed, the latest research, new specialties, and finding new doctors in the hopes of finding help.  One foot in front of the next.  Of course I’m desperate to get better, I do everything suggested to get there, and I smile and nod through every unwittingly heartless comment from doctors, strangers, friends, and family.  One foot in front of the next.  I have learned every trick to pull me through the worst of times, and there are many, and to cling to the few good ones.  One foot in front of the next.  But really, is this a life? *STUMBLE*

First step is a doosy.

First step is a doosy.

I’m not living, I’m surviving and the two are vastly different.  Someone lives a life, but they only survive a car crash, or cancer, or a hostage situation.  Survival is temporary, then you go back to living.  Survival is a struggle, where you are torn down to nothing but raw and naked skin and then fight beyond what even you knew you were capable of to find your way back.  It is the point of our lowest of lows and those of us that pull through it can lead us to our highest of highs.  We, as a species, are hard wired to struggle to survive.  However, there are always limits.

Survival is about holding on until help arrives.

Survival is about holding on until help arrives.

To be clear, I’m not trying to freak anyone out.  This isn’t a cry for help, a threat or a promise.  I’m just being a little more honest than usual.  I’m tired.  Tired of being the one with the brave face and the fake smile.  It’s not real.  There is so much that you just don’t see.  So much that we hide because we don’t want to scare you, because we don’t want to frighten you, because we don’t want to have to worry about you worrying about us.  We don’t need that on top of everything else.  What you probably don’t see are all the tears, the ones we cry when we are alone, when no one is looking.  You don’t see the hopelessness that seeps in around the edges with every shrug of a doctor’s shoulders and every blank look from friends and family.  You don’t see the anger that chokes the air out our lungs when nothing changes day after day no matter how hard we fight.  Most of all you don’t see how lost we feel.  That we no longer even know what to hope for.  Yes, of course, we all just want to get better, but what is the path to get there?  Do we hope the doctors find a diagnosis?  What if that diagnosis is terrible?  Is that better or worse?  Will things ever change or is this it?  Most of us face all of this alone, so our loved ones can sleep easier at night.

despair

But back to the original question, what does it mean to live.  Those who are chronically ill or in pain are extremely limited in how they can engage with this world.  Whether the illness is physical or mental or both we spend most of our time fighting for small moments of normality.  Whether it was getting to the grocery store or an hour with a friend, it meant more to us than a trip to Italy means to many who are healthy.  We cling to these victories because they are our life lines, they are the moments that help us remember life as we once knew it.  I know that each and every one of us has our tricks, our ways to find a piece of happiness in all this struggle, but I still have to ask: Are you living or just surviving?  And the bigger question–is it enough?

You tell me.

You tell me.

Posted in anger, anxiety, chronic fatigue syndrome, Chronic Illness, Chronic Pain, coping, depression, fear, fibromyalgia | Tagged , , , | 37 Comments