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Mistakes Made When Traveling

With Chronic Pain/Illness

 

We have friends who have a ranch about 5 hours from here, give or take with traffic. The drive, from my point of view, isn’t too bad on a mild pain day and we typically stop mid-way for snacks and just to get out for 2o minutes. The problem, however, is that even someone who writes about chronic pain/illness all the time is bound to make a mistake when traveling. Here are a few of mine from this past trip (I’m sure there are more).

 

  • Cover your bases: In effort to travel light I didn’t pack a sweater or jacket. Though I do better when the temperature starts dropping, I also seem to feel temperature changes more acutely, so when it drops below 70֯, I typically need a sweater. We left home at 90֯ and then arrived at the ranch bringing the rain with us and a drop-in temperature to about 60֯. I was freezing my butt off and miserable so that I couldn’t enjoy myself outside as much as I wanted to without shivering.
  • Don’t be a slave to fashion: I’ve been lamenting my jogger and legging wardrobe and wanting to wear my jeans again. I’ve never been stylish, but constantly in leggings and joggers has begun to wear me down a little and I do love jeans. I found two pairs in my closet that seemed to fit comfortably, but I only wore them for about 30 seconds. That didn’t stop me from bringing a pair along and instantly regretting it after the first 30 minutes. I was so very uncomfortable that I wanted to cry and realized how stupid I’d been to give into a sense of fashion when pain is involved. I have to take care of me and part of that is dressing in clothes that don’t make me want to cry.
  • IBS Doesn’t Go On Vacation Even When You Do: I had a good week in the IBS department so I was pretty optimistic for this little weekend excursion. But IBS doesn’t take a holiday and that second day, right after lunch, all hell broke loose. There is nothing more embarrassing than having a diarrhea flare up in someone else’s house. I did have medicine, which helped, but those damn jeans- ugh, I was so uncomfortable!
  • The Perils Of Eating On The Road: I’ve talked about before how stressful eating is when you are dealing with something chronic like IBS. My situation is like many others where it’s basically Russian roulette. I toggle between trying to be careful of every bite and not giving a damn because it doesn’t seem like there is any rhyme or reason to it. When you are traveling and maybe needing to eat on the road or perhaps like me, at a friend’s home whose cooking you are unfamiliar with, it can lead to issues. This experience has caused me to consider perhaps bringing some things in a cooler that I know don’t bother me so that I up the odds in my favor and maybe don’t have a flare.
  • Feeling High-Maintenance: I said no to bringing my heated blanket or an extra pillow or two. Seriously, WTF was I thinking? I’ll tell you what I was thinking: I’m so complicated. I’m so high-maintenance. I can’t just travel a weekend without bringing half my house. Slap-self-silly. I know it’s only a weekend, but it’s not something I can go without. I know I’ll hear that horrible term, high-maintenance, in my head, but if I’m going to travel I need to practice what I preach, right? I need to bring those self-care items with me or be left unnecessarily miserable the entire time.

 

I think the biggest issue is not wanting to inconvenience everyone. When I look at myself and these chronic issues I deal with life has very much become about things I can do to make my existence more comfortable. However, when I step outside that little box and I look at all the things I do from perhaps the perspective of someone who has no idea I deal with chronic issues, it appears that I am a spoiled brat, or high maintenance. Almost worse than that is the perception that I’m so sickly that I need all these things which can lead to being excluded from activities, or not thought about being included because surely, someone who needs all these extra things to be comfortable couldn’t do that. My husband is very active and has friends who are very active and I hate being seen as his wife whom he needs to take care of. There are a lot of things I can still do, I just have to think about how to do them. And sure, there are things I can’t do, but I want to make the decision myself. Thinking about how you might be inconveniencing other people diminishes your importance and also your enjoyment of the trip. The whole purpose of getting away, for a short period of time or long one, is being able to enjoy it. So bring the extra sweaters, bring the heated blanket, bring the cooler of snacks and drinks so that you can enjoy the time away.

 

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The Chronic Patient/ Doctor Relationship: It doesn’t have to be complicated.

As a person with chronic illness/chronic pain, your relationship with your doctor is an important one. In many ways, it is the most important relationship you will have because he/she will be directly involved in your treatment and your medication which can alter (good or bad) your quality of life. Many of us however, find this relationship to be a most tenuous one because we often feel that our doctor is not actually listening to us, that instead they are taking a cookie-cutter approach to our treatment and throw their hands up in the air when we express to them that the treatment isn’t helping. Our frustration can lead to a chronic switching of doctors, with this ridiculous hope that if we “kiss enough frogs,” we may find the right one. It doesn’t have to be that way.

Understand first, that the majority of doctors did not go through all their training with the end goal to “manage” chronic illness or pain. They became doctors to heal and you cannot heal a person of chronic illness or pain. This is not to say that these doctors don’t want to treat you, only that they may be fumbling as much in their attempt to treat you as you are in your understanding of your illness. There is a lot of trial and error that goes into treating chronic illness or chronic pain, especially if your doctor is listening to you and not trying to apply some cookie-cutter treatment. It is imperative that you talk to your doctor and that discourse begins when you first meet them.

When you meet your doctor explain what type of relationship you are looking for. Are you the kind of patient that likes to understand their illness beyond the basic understanding? Do you research your illness and the varied treatments that are offered? Tell them. Do you want to be involved in your treatment decisions? Do you want to get to the root cause rather than just applying band-aids to treat the symptoms? Tell them. I don’t believe all doctor’s share the same philosophies about treating patients. You are going to have those that take on a very patriarchal outlook, where they are the ones that diagnose and treat and the patient obediently follows their instruction, and others, who want the active participation of the patient. If we talk to our doctors on that initial visit and explain to them what we want, and what we expect, it will help us weed out those who simply won’t with out ideals.

Understand that when you find a doctor who meets your criteria and whom you are able to build a relationship with that it still may not be perfect. Even if you are involved in your treatment there may come a time that you do disagree with how things are going. It’s normal. Talk to your doctor about it. Don’t let it fester so that by the time you do voice your thoughts they are spoken in anger and frustration. Remember that respect is a two-way street and that most things can be worked out and common ground found if you speak rationally about what you disagree with. I know most of us have been through hell and back when it comes to doctors. We have become inherently distrustful and if not that, there is a constant waiting for the other shoe to drop. It may be naïve, but I still believe that most doctors do want to help us, even when I hear stories of patients who are not being helped. I don’t want to make some broad, generalization about the profession because it is unfair, but I am also human and sometimes I get incredibly upset by what I see and hear first hand and through others. But nothing is ever solved through doubt. All that does is build a wall around you where no one can get in and no one can help you. It’s exhausting putting yourself out there all the time and being disappointed, but keep trying. Finding a good doctor with whom you can discuss and disagree and find alternative treatments that work for you can be life changing. Good luck!

 

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My Bizarre Obsession

Since I was a little girl I struggled with OCD. It began as counting my fingers, starting from my pinky and just going back and forth, from pinky to index and back again. It progressed to an obsessive-compulsive need for cleanliness and when you are a teen-ager and breaking out and thinking it is because you are dirty it can turn into something nightmare-ish. I was somewhat lucky in that not only was I still able to function for the most part, they were compulsions I could hide or be discreet about. I was fifteen when I developed an eating disorder that I personally link to my OCD because counting calories became my undoing. Though I saw a therapist and got back on track with my weight and health, I feel that it had less to do with emotional pain and more to do with OCD. At the very least, it was half and half and while I got better there, it seems that my OCD just relocated to something else. That something else was skin-picking, also known as dermatillomania, also known as excoriation disorder. This has been the most difficult to overcome and I still deal with it presently, though to a lesser degree.

If you don’t know, Dermatillomania is a condition where a person feels compelled to repeatedly pick at their skin, scars and other areas of skin, sometimes causing visible wounds. This is sometimes accompanied with self-harm, though it doesn’t have to, but almost always goes hand-in-hand with OCD. In my case, it was all about the OCD and while I guess you could say that I do self-harm by picking at my skin and causing small wounds, I don’t do anything more than that. It is, in my opinion, the most distressing of my mental health issues of which there is bipolar and anxiety and mild PTSD. It is distressing because sometimes I don’t even know when I am doing it and by the time I am conscious of it I’ve already damaged my skin. It is distressing because the concentration seems to be my face and that is the most visible part of you. It used to be my fingers- that space between the knuckle and first joint- I would pick at and pick at until they were truly destroyed. I got myself so worked up and distressed about infection that I stopped, but just like previously, it simply relocated. The damage to my face is not as severe as what I used to do with my fingers, looking more like I picked at zits than large wounds; I can cover them up with minimal make-up, but because it’s on my face, I feel like the whole world can see it. It’s one reason I am in-love with Snap Chat and filters. If you follow my Twitter or Instagram you know, filters are my friend, and not just because chronic fatigue does not lend to being photogenic. This is an embarrassing and weighty secret coupled with not just a little bit of shame that I have carried with me a long time. In fact, so long not even my psychiatrist knew I was dealing with it until about a year ago.

This condition is not something I had a name for. I had no idea it fell into that OCD group and I can’t even begin to articulate my shame. It wasn’t just about picking scabs or picking at my skin. It was every little imperfection seen as the enemy and to a certain extent, still is. I am currently dealing with a heat related eczema and recurring rash along my arms and face, but the eczema is all over my back  and thighs and so when I run my fingers across my skin at any given time and feel these little bumps or dry patches it sets off this alarm in my brain which causes this inexplicable desire to pick at it as though picking it away will make it disappear and my skin will be smooth again. And like I mentioned earlier, sometimes I don’t even realize I am doing it until my fingers come away with blood. Still, when it’s over, I feel relieved. Like that itch was finally scratched and I can breathe. It’s a lot less now that I am medicated. I take Tegretol and while that is not the go-to drug for OCD, because I also have seizures, it’s like killing two birds with one stone and it’s helped. It was amazing to me when I realized it was helping. Just one day I realized, oh my goodness, some of those wounds are healing or scabbed and gone and I felt saved. Yes, it still happens but between medication and talking about it and using mindfulness as a part of my inner healing, I am over-coming it.

Sharing it has helped me feel less alone and less ugly. Reading about other people who are going through it, or who have gone through it and come out the other side, has also been helpful. I have to work at being positive every day. I have to work on self-love. When I wander off my path I feel that urge more deeply and I do wander off the path. I am not perfect. But instead of chastising myself for it or hating myself for it, I forgive myself and work on veering back to where I need to be. It’s a lot of work. Sometimes it’s exhausting because I don’t just have this one issue, I have a lot of issues.  Don’t get discouraged if you are trying to work through this and fail sometimes. It’s not easy. But know, you are not alone.

Chronically Seeking

I began the day writing about one thing and after a doctor appointment, decided to take a different route and write about something else. Something that I think many of my Spoonie friends out there understand. I am sitting here feeling frustrated and angry and like I am not being taken seriously. I feel like I have little in the way of choices and I wonder how many of you feel the same way I do. I am talking about our doctors.

Don’t get me wrong, I am not on a doctor witch hunt. I have and have had, excellent doctors. In fact, if it wasn’t for a few doctors I have had, I might not be here writing about this. So this is not a hate filled rant against doctors; this is, instead, something inspired by frustration and feeling very much like I am caught between a rock and a hard place.

This doctor that I speak of has not been terrible, either. In fact, for the most part, has been very good and very helpful. However, I feel that we haven’t been on the same page for a long time and in recent months, I’ve felt our paths diverging even more and also feeling as though they, too, are feeling the frustration of a patient with no clear “fix.” There is also a sense that they are focusing on me in parts and not as a whole and the problem with this view, in my opinion, is that these parts cannot be fixed because they are part and parcel to a much broader issue- Chronic illness, which, the majority of doctors do not know enough about. Instead, they look at parts. I can’t tell you how many surgeries I have had that were needless, because no one was seeing the broader issue. While I do have a doctor treating me for the broader issue, I still have other doctors who are integral to my treatment who don’t always have the same opinion.

This is my question and why I am writing this: if you don’t agree, how do you go about getting a second opinion, or looking for another doctor completely? For me, the first place I look is always my insurance. Are they on my insurance? Then, I typically look at where the doctor is located, because I am relying (most days) on my two eldest to drive me. It can be complicated with kids who are working and going to school to find an appointment, but I manage. The next thing I will look at is if there is any kind of feedback on Yelp or other doctor rating sites, because they help in deciding whether or not this might be the right doc for me. I understand that not all the reviews are honest or fair, but I try to come to my own conclusion. After considering all these things, I am not left with many choices. Using this as an example, only three. Two of which I have already seen and have proven to be as horrible as their reviews, and then my doctor. So, what is a patient left to do? Grin and bear it? That seems to be the motto among chronic patients everywhere because I think besides being limited in who we can see, there is also an overwhelming feeling of exhaustion because we have had to see so many doctors. We’ve had to weed out the good from the bad, sometimes after extensive testing, only to have to start from the beginning again. It’s tiring and emotionally exhausting.

What to do about it? I was sitting here brainstorming what I could do and then something funny struck me. Want ads. They should have want-ads or maybe a website catering to the chronically ill who are seeking physicians. I can write a great one. It would go something like this:

I am a 44-year-old, chronic pain and chronic illness patient. I am looking for a kind, empathetic physician who understands my plight and who can think outside the box. Moreover, I am looking for someone who isn’t afraid that I know more about my illnesses than they do, who will integrate a holistic approach, meaning looking at me as a whole person and not just parts that might be damaged. An added bonus would be someone who isn’t offended that I want to be a part of my care and not just simply follow directions based on their advice because I understand my body and how I am feeling better than anyone.

I think that is a brilliant ad, if I do say so myself, but I am not sure there would be any takers. Still, if anyone is considering an app that pairs up doctors to their patients and vice-versa, I’m all in. Until then, I remain, chronically seeking.

 

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On the Fringes After a Suicide

If you’ve read my blog, you know I have dealt with suicide. In fact, I have been on both sides of the fence, having known someone who has taken their own life and having attempted it myself. I have read countless books and articles on suicide and how to move past the pain and loss. It’s been almost 20 years since my ex-husband killed himself outside my workplace and I still struggle with it but it has gotten much better. In these 20 years I have discovered there is little information about how to deal with the suicide of a person you are no longer in a relationship with; there’s little information on how to grieve a loss when this person caused you a lot of grief and whom you really weren’t speaking to but had two children with. These are not examples found in books and articles. It’s always about someone you love, who you were friends with or married to or a sibling or son or daughter. Not an ex. During that time, though I was re-married, I felt on the fringes of emotion and I felt alienated and very alone. People who had known my situation would comment with words of relief, which was two-fold. Relief that he’d no longer be able to torment me and relief that he had not taken me with him. But this person had been my husband and this person had been the father to my two children, who were too young to understand what had happened and who I’d not be able to sit down and discuss the nature of his death until they were much older. I floundered for a long time trying to deal with things in what I wrongly labeled as the “proper” or “normal” way to respond.

It is true that at the time of his death we were no longer married and that I’d moved on and found a great man and love. But affection and/or romantic affection are not exclusive to grieving the loss of someone who had been in your life, even if that person had not been the best representation of themselves that they could have been. After-all, I’d married him and spend a handful of years with him and had two kids with him. But I hadn’t been allowed to attend the funeral and again but very literally, I stood on the fringes of where friends and family had gathered under the canopy at the gravesite and saw his casket from afar. My dearest friend had brought me and we stood there, awkwardly watching and she held me while I cried. I can’t express how difficult it was. I was caught between grief and guilt, feeling that all of it was somehow my fault and I spent many, many years trying to grapple with guilt that was never mine, but had been re-enforced by his family in ways like not allowing me to be at the funeral and instead watch from the sidelines. Those subtle gestures are profoundly impacting and leave lasting damage to a person.

Even now, as I type this, I know that some would question why I felt so grieved by what he did. After-all, he had come to my place of work and could have, very easily at the time, come up to the office where I worked and done much more, lasting damage. We’ve all seen the deadly after-math of workplace violence. I think the difference and what has made it such a difficult thing to deal with is that I have seen things from the other side. Way before this happened, while I was still married to him, I’d tried taking my own life. I understand on a molecular level; the deep and profound pain he must have been in that it would lead him to show up at my work and would end with him dead. I understand so deeply that I don’t think I ever hated him for it. That is a lie. I did for a little while. I hated the knowledge that had he chosen a different path that I might not be here. But hate did not last as long the grief and guilt I felt and still feel to a much lesser degree. The anniversary of his death is coming in a couple of months and I will re-live every moment of it in a single thought, but the mood will last awhile, like lingering storm clouds without the rain. I have come to terms with it. I think death leaves its’ mark on all of us because we are afraid of it and when it’s unexpected it reminds us how fragile we truly are. This is true for suicide too, because while it may not be old age or illness that implies a fragility of the body, it is instead a fragility of the mind and no one is exempt from that.

I think it is difficult being on the fringes when someone takes their life. Even without the complications of my particular tale it is difficult. One of the things that can help people get past a death like this is having people to support you and it is difficult to get the support you need when you are unable to speak about the person in a way you need to because those around you feel you are better off. The difficulty continues and extends to friends of the person who died because they might not feel inclined to talk to you and may not even feel like your grief is genuine. When you aren’t exactly in a relationship with the person anymore people tend to feel like you shouldn’t have the feelings you are having. That grief and pain and whatever else you might be feeling aren’t yours, that somehow you forfeited your right because you are no longer with them. It sounds ridiculous when you read it, but it is very true. We’re funny as human beings when it comes to that and feel like we own the rights to how someone should feel. But being human, I care. I am also very empathetic and that empathy doesn’t see a boundary. So, I grieved long and hard and very privately for a long time, not feeling that I had a right to my grief.

My best advice would be to allow yourself your feelings and to grieve the way you need for as long as you need. If you don’t have someone in your life who will listen to you without being judge-y then start a journal. Writing has always been therapeutic for me and you don’t have to be prolific. You can write as much or as little as you need to. If you weren’t allowed to attend services, like me, you can light a candle and say good-bye the way you need to from home. I think it is very important to have closure in any way it feels right to you. I wrote a letter to my ex. I was sobbing at the end of it but it was cathartic and I did feel better. The most important thought I can leave you with is knowing that you are allowed your feelings and that no one should deny you. That by making you feel as though you don’t have a right to this and alienating you and leaving you on the fringes, they are doing greater harm. You may never be able to talk to their friends and family about how you feel but you don’t need to. You can self-heal on your own and become a much stronger person afterwards.

The Trouble with Spoonies and Fun

Prepping for a Concert and the Flare to follow

Every Spoonie out there understands the consequences of doing too much. I think most of us try to balance work and home and any fun we do so it won’t stress out our body and we won’t have a flare. But sometimes flares are unavoidable. There are things in life we have to do, even fun things that we want to do and we weigh the options and go for it despite the likelihood of a flare. For instance, a recent early Anniversary gift from my hubby that I have known about for months: Evanescence and Lindsey Stirling tickets. The concert was this past Saturday and I’m still recovering. It was well worth it the seats were amazing and I enjoyed every minute of it, but the venue was difficult for me though it is a beautiful place. It is outdoors, the grounds are sprawling and unfortunately, I found their accessibility lacking. Handicap parking was first-come-first-serve and even our very early arrival, several hours before the first set, we still found nothing. The venue is out-doors and from the drop-off point to the actual pavilion where the concert takes place was quite a walk for me with my cane. It is also August, in Texas, which means it feels like you are just a few inches from the surface of the sun and I fall into a category of people whose body is not agreeable to the warm temperatures. I am not sure if I am in the minority, especially when you are talking about the heat here in Texas, which I think could offend even the most tropical of people but, I seem to fare better in cooler weather. I think I must have sweat about a gallon, no joke, even after 8pm when it was dark, it was still around 85 ̊. Even after living here almost 23 years, the heat just takes your breath away. You don’t get used to it, you just tolerate it and are grateful that most of the time you are in a/c. After the concert there was some difficulty in picking me up because I had wandered too far in migrating with the throngs of people leaving and I ended up having to walk around quite a bit in meeting up with the hubby, who ended up having to park in BFE. This post is a combination of two things that occurred to me afterwards: Things you can do to ease a flare the day after and, how you can prepare for an event (like a concert) better than I did.  I don’t go out much, in truth, so I suppose that is why I’m pretty shoddy at preparing. But where I fail, you, my friend will reap the benefit of hindsight!

5 Ways to Prep Before a Concert

1.)   The Venue: Do your homework! You can’t determine where a concert will be held but you can recon the venue so when you show up it’s not all a big -inconvenient- surprise.

2.)   Parking: Make sure you know where the disability parking is if you are able to use it. If you don’t have a placard or plates, try to find the most convenient place to park that day.

3.)   Call the venue: This one is the most challenging for me. I don’t like feeling like some prima-donna who needs special treatment. Don’t be like me. I mean it. I may have suffered quite needlessly all because of my own stubbornness something that may have had a solution had I called. Having a disability and needing special accommodations doesn’t make you spoiled. You are just wanting the same, reasonable access as everyone else. So, call the venue and see if they offer any services that can assist you in getting around better.

4.)   Clothing: Make sure you are comfortable for the event and season of the event, if it is outdoors. I must have changed four times before I settled on something that I felt would keep me the coolest and I am grateful I did. The black leggings that was my first choice, while comfy, would have been the death of me in the heat department. You want to enjoy yourself so don’t sacrifice comfort for style.

5.)   Ear Protection: This is huge. Typically, we always bring ear protection with us but this time we forgot and by the end of it I was not alone in my ear pain. Not to mention it triggering a migraine that luckily, I had brought meds for just in case. We use the squishy ones for the shooting range and they do not impair your hearing of the concert, just your ears. Even two days later, I am still experiencing ear pain.

I’m sure there are more ways to prep before a concert that I haven’t addressed. Please, feel free to share them with me.

5 Ways to Self-Care the Day After

1.)   Rest: This is the biggest and most important thing you can do for yourself. There is absolutely no shame in it and your body will recover faster if you take the time out for it instead of just trying to jump back into life.

2.)   Crock-Pot-Rescue: When you plan your meals for that week of, make sure to include a crock-pot dinner, or something equally easy, for the day after the concert. This is part of self-care and resting.

3.)   Netflix and Cuddle: Or Hulu, or Amazon or Crunchy Roll! It doesn’t matter, just grab your favorite cuddle bug, sprawl out and indulge in your favorite movie snack and relax. It’s amazing what cuddling can do in combination with relaxation.

4.)   Bath or shower: Grab your favorite essential oil or bubble bath and sink in. If sinking in is not an option you can still drop some essential oils into the shower and just luxuriate in the hot water and soothe muscles and psyche while inhaling the fragrant scent.

5.)   Pamper yourself: Pick that one favorite thing you never indulge in and do it. It doesn’t mean you have to go out anywhere either. Love getting your nails done? Grab your favorite color and set up a comfy spot and paint your nails. Never have time to read? Here’s your chance! Make a nest on your bed and curl up with that book you’ve been meaning to get to. Sky is the limit and remember, you don’t need to wait for a flare to do these things either. Self-care can be any day of the week.

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The Demoralization of Not Working

I stopped working almost two years ago now. I had been working for the school district for a before-and-after school care program. It was a pretty good gig at the time. It paid well and while I had to be at the elementary school at an un-Godly hour, I was done at 8:15 and didn’t have to come back until 3pm and I liked the kids. It wasn’t day-care and the kids were always engaged in an activity and I really enjoyed it. My reason for leaving was surgery. I had sacro-iliac joint fusion and not only was it a painful recovery, but I did not have the success with it I was hoping for. My reason for not returning was in-part because of the less than satisfactory result of surgery, and because of the nightmare that my chronic illnesses had become and the pain I was in and still am in.

I decided to move forward with disability and (at least in my state) I could not be working while trying for disability. Two years later, and a lawyer involved on my behalf, I still am waiting on a hearing date and have not worked. Making the decision not to work was not an easy one. I think that even those closest to me may think it was the easiest decision in the world, but it wasn’t. It was the hardest decision I ever had to make and I’ve made some pretty tough decisions. Having a job is not only something that provides for your family, but also makes you feel like you are a capable and functioning adult. When you have to decide that you can’t work, not only are you cutting out a paycheck that helps your family live better, you are cutting out something that makes you feel independent and complete.

I deal with a lot of guilt over my decision to quit working because of my health. I see how my husband has to pick up the slack and how hard he works so we don’t feel the impact of my not working as harshly. Still, when life happens and we are faced with unusual expenses like when one of our dogs became extremely and suddenly ill, that absence of a paycheck is acutely felt. It’s not just guilts about the lack of a second income, it’s guilt about not doing my part. I have two parents who worked extremely hard all throughout their lives well past the average age for retirement so they could live comfortably and because all they’ve known is work and if they were hale enough to work, why stop? I think retirement was hardest for my dad and even know he keeps himself busy at 81 years old and volunteers at the local hospital in their ICU. I am 44 years old and looking at disability and feeling like crap because I don’t feel like I am doing my part.

Not working has a unique way in demoralizing you. There are simply so many things attached to having a job or career. Self-esteem and independence and pride you feel when you do well at your job, a paycheck that is yours and that you can spend as you see fit, and the benefits that come with a job that can help to secure a comfortable future when you do retire. Not working at 44 years of age brings skeptical looks from people as well as pity. “Oh, you poor thing.” Or “Isn’t that a shame.” My favorite, “At least you’re married.” I feel as though I am no longer ranked among the adults of my age. I am an adult, sure, but an adult that has to be taken care of. I am a burden on those that I love. And don’t think I haven’t considered some very frightening possibilities, like what happens if something befalls my husband? Would I have to rely on my daughters to help me live? Would I be forced to work despite all my issues and would I be able to keep a job or would I be jumping from job to job because I get fired because I am sick? It’s humiliating and keeps me up sometimes worrying.

As I said earlier, the decision not to work anymore and seek disability was not easily made. I looked at every issue that I struggle with on a daily basis and the many jobs that might be available to me, with my education and skills and determined that the unpredictability of a couple of my issues alone makes it extremely difficult to be relied on as an employee. Debilitating migraines that come on suddenly and cripple me for anything else but laying in a dark room and praying that it will pass quickly. The IBS-d that doctors can’t treat effectively because I take opioids and so every couple of weeks I am in agony and running to the bathroom. The seizures I have, that even though I am on meds I still have absent seizures that make it dangerous to drive. The pain I am in daily, whether it is all over my body because of the fibromyalgia or specific to joints because of the RA make my life unpredictable and makes simple things like getting out of bed hard, never mind going to a job for 8-hours a day. The opioids I take for the pain which make me a risk on the road and dull my mental acuity. There is nothing I can do for long periods of time that don’t cause me pain. Standing, sitting, walking and even laying down for too long hurts. I am at risk for falling because I have balance issues and I use a cane for both balance and because my SI-joint hurts all the time. All of these factors and more were brought into consideration when I decided I just can’t work. The more? Looking at it from an employer’s point of view. Who would want to hire me? And if they did hire me how long would I last before “reasonable accommodations” became tiresome and before my absences became something they could not overlook anymore? I don’t think it would take long. Employers kind of like hiring reliable people. I am the antithesis of reliable.

I suppose my final thought would be extended to those who are able to work, to not look at those of us who can’t with disdain. We’re not being lazy. We’re not sitting around at home all day eating bon-bons. Chances are that we feel horrible about not being able to work. Chances are that we feel extremely guilty that our partner is out there working every day and we can’t help. We make a great effort to do what we can at home so that we can feel useful but it will never compare to going out there day-after-day and working, sometimes over-time and holidays to make up for the other partner needing to stay home. And understand that we are grateful. That we understand the great sacrifice of our partner has made so that we can be home. Staying home is tough.