Why is support such a hard word to comprehend?

I’ve been thinking a lot about support recently.

We, the chronically ill, think about it all the time to be honest. We lay in our beds, or sit uncomfortably in our chairs, just wondering when we will have enough.

The ladies in my support groups get it. We can talk all day about the lack of support we get from our own doctors, friends, family members, even spouses. Some of us have been sick for many years, and yet we always are surprised by the painful sting of the lack of understanding around us.

And it’s not like our disease is uncommon. You can find a wealth of information online regarding the disease and its symptoms. Rheumatoid Disease is unfortunately common, I know at least four other people with varying stages of it. So, I find it fairly ridiculous when I’m faced with comments from people I know, saying “Oh I don’t really know much.” Yet, these are the same people that feel the need to lecture me on how I could be cured if I started yoga and went gluten free. *insert eye roll here*

Just for the record (in case you’re a new reader), I have tried so many diets, workout routines, and herbal treatments. I’ve tried acupuncture, CBD oil, vitamins, spiritual healing, magic moon rocks, I mean I could go on for ages…

When you are as sick as I am, trust me when I say this, you will do anything and try anything. I never asked to be sick, this wasn’t in my life plan. Do you think when I was young I dreamed about one day being 37 and unemployed? Do you think I imagined dealing with pain day to day that was so bad that most medications in the world don’t work for me? Do you think I hoped to have such a debilitating disease that it scared away most men in my life, leaving me often single and lonely?

No. The answer is no.

I have tried everything in my power to find something, anything, that would work. So, once again I am here pleading with people to not be bad friends to your sick friends. They don’t need your judgement. You will not and cannot ever understand what they go through day to day, unless you’ve experienced it yourself.

The best support is just being there. You promise to show up, then show up. If you promise to listen, then listen. Be supportive by understanding that what we are going through is something difficult for us. That we didn’t ask for this life, but that we struggle through it every day. And we want to be better.

A women in one of my support groups is realising that her husband is not the man she thought. He is very unsupportive of her struggle, and instead of trying to uunderstand, he checks out. This is not the support we want or need. Spouses and family members may have it the hardest, it’s true. They see us at our most vulnerable, at our weakest moments. The best way to support us through that is to just BE THERE. Don’t make it about yourself, your needs, why it affects you. We know it affects you. But we need you to be strong for us because sometimes we can’t be strong for ourselves.

This last month was a hard one for me. I was in the hospital for pneumonia, an ailment which I’m still recovering from. During the worst of it I cracked My ribs on both sides from all the coughing. It has been a hard month of pain on my body, and a very slow road to wellness.

Because of the multiple hospital stays I’ve had within the last six month, my mother and I decided to move in together. It seemed the best way to give support to each other. We move this weekend.

Now obviously I don’t have to tell you how painful it is to move with broken ribs. Packing has been a nightmare. The last two times I’ve moved I was in a romantic relationship. Now that I am single again I am reminded how hard it is to do things like this without the support of a partner.

So, I took to Facebook and asked if any friends could help me with the move.

I was shocked at the lack of response. During the best times I’ve always had close friends offer help if I need it. But when I call in that offer? Crickets…..

At the same time, a friend who I don’t know very well, stepped up. Not only offering her help, but also that of her partner. It’s times like these when I feel my faith in humanity gets restored bit by bit.

But I’m still disappointed.

I am a giver. I will give and give until I have nothing, if only to ensure the comfort and well being of others. I know this about myself and I know it has been overly taxing on me before. Especially in the midst of me living day to day with the illness that consumes me. But I will always offer help, and give whatever I can. That’s how I was raised.

It’s taken me many years to realise that not everyone is the same. Some people take. Some people are only present when it suits their needs. Some people are flaky. And honestly, some people just don’t care. And it can take you a while to really figure that out for yourself. I’m 37 years old and I still hold on to the hope that everyone cares the same degree that I do.

I’m an optimist, what can I say?

I guess the point to my litany is to be self aware. Be supportive to those who need it. Be a good friend, spouse, family member. Give what you can, not just take. Try to understand what it’s like to walk in the shoes of others. Listen. Care. Be.

I still don’t understand

I grew up with Disney, and fairytales, and romance. I grew up believing one day my prince would come and sweep me off my feet and save the day.

In my twenties I quickly learned how silly these concepts were. That Disney wasn’t real, that fairytales were rare, and that there was no prince waiting on a white horse.

In my early thirties, I woke up one day with Severe Rheumatoid Arthritis. In the six years that have passed since then I’ve learned that my body wasn’t made for romance, fairytales, and dreams come true.

I don’t know what the meaning of life is, or why we are here, and what we as humans are meant to do. But I’ve come to realize that I my body and mind were meant to endure colossal amounts of pain.

Pain from the diseases in my body that won’t quit multiplying. Pain from cancers that won’t give up. Pain from being destroyed from inside out. And the pain from being constantly let down by those who don’t stay.

If my body was meant to endure such stress and pain, why give me a heart and mind that is so vulnerable to the human condition?

Why let me know sadness and sorrow, heartache and loss? Was the physical endurance not enough for one person to take? Must I feel the destruction of everything inside on such a monumental level?

I don’t understand why I was made to experience so much pain. I don’t understand. I don’t understand.

little by little

I was looking through #quotestoliveby on Instagram tonight and came across three small words.

“little by little”

I’m sure that this is probably a mantra for many, as it could encompass so many aspects of life. It might have been written to encourage people to strive for their goals, to not give up. Maybe to save their pennies, and go for that dream vacation. Or keep chipping away at their education, until they’ve succeeded in their dreams.

I used to love seeing quotes like this. I’d save them to my quotes board on Pinterest. I even contemplated getting some of them as tattoos, so powerful a message they were, I wanted them as a permanent reminder.

But tonight I see these words and they don’t speak to me as they once might have. I see “little by little” as a reminder of my mortality. I see it as my disease chipping away slowly at my body from the inside out.

Little by little my bones grow brittle and break more often.

Little by little my fatigue consumes me to where I wonder if I can get out of bed again.

Little by little my hair falls to the floor.

Little by little the drugs fail and I wonder what will be next if I’ve already tried everything.

A lot of people have commented on how strong I am about my disease, how in control I seem, how optimistic. They don’t realise that this is the mask I must wear, my uniform. Because if I share how scary it is to not know when the end is, then I’m being “dramatic” or “looking for attention”. No one wants to hear when the chronically ill are suffering. It’s a nuisance, something that should be kept to themselves. So we do. We keep it in. We become experts at the “I’m ok”.

But there are days like today, moments where the gravity of everything collapses our resolve. It might be a song on the radio, or a comment someone made at dinner, or that moment when we look in the mirror while washing our hands. Everything we hide from everyone, including ourselves, shatters. We remember what we are going through and how bad it is.

So tonight, when I read those three words, I remembered that little by little my body is dying. And that just sucks.

Oh, is my hair loss from chemotherapy inconveniencing you?

For those of us who take forms of chemotherapy for our disease, it’s a pretty big deal.

It’s bad enough that we get flak from the cancer community for using the term “chemotherapy” when explaining our biologics, when that’s what it actually is! I get that some of us aren’t on the high doses that cancer patients are on, BUT IT IS STILL CHEMO AND IT STILL HITS US HARD. It’s not a competition to see who’s on the worst drug or dosage.

I’ve been on biologic infusions for a couple years now. That means that I willingly consent to toxic chemicals being pumped into my body in the hopes that it makes me well. Sometimes, they do. I have unfortunately been on the other end of that a few times. The last time my body didn’t like chemo, the backlash consisted of multiple heart attacks and an eight day stint in the ICU.

It’s not a competition, so don’t tell me the chemo I take doesn’t have a toll. I get nauseated and vomit for hours. My body turns to lead and I have to sleep like the dead for up to 20 hours sometimes, just to recoup. AND my hair falls out.

Its gotten better over the years. The first time I went on chemo it came out in large clumps, to the point where I had to cut my hair short to hide the gaps. These days it doesn’t fall out en masse. But it does fall out! I have strands all over my floor, all over my pillows, and all over my bed and sheets. It sticks to my clothes, and it stands out cause I’m a redhead these days. You really can’t miss it.

It makes me very self conscious. You don’t need to tell me my hair is everywhere, I KNOW. No one knows better than me!

Most people are pretty cool about it. Sometimes they pick it off me discreetly, or mention I have a chunk sitting on my shoulder. I blush, take care of it, and we act like it didn’t happen.

You know what’s not ok?? Acting like you’re put out because my hair is in your vicinity. I’d love to not have my hair fall out, but I didn’t choose to be chronically ill, and I certainly don’t love being on chemotherapy. Have some fucking sympathy or compassion. But saying “Ew your hair is everywhere” or refusing to touch things in MY room because the hair “grosses” you out… Like are you serious?

How entitled do you have to be that you shame me for something I can’t control and hate about myself?!?! That shit is not ok. And while in my naivety I may have put up with it in the past, I will not longer.

No one in any circumstance is allowed to make you feel bad about yourself or your circumstance. EVER. That shows their insecurities, not yours.

So that will no longer fly with me. Nor should it for anyone else.

Marking Time

I often find myself thinking a lot about time. Not time in the sense of watches and clocks, but more as how it relates to me, and how it passes. For someone with an illness or a disease, time can mean a lot of different things. Time can mark minutes til your next medication feeding, days until another doctors appointment, weeks between ER visits, or years left on your life clock. I’ve been thinking about how precious my time is. And how limited it can truly be.

I marvel at how my time is perceived by different people around me. A family member made a comment to me the other day about how well they thought I’d been doing in the last six months. I found it to be such a strange observation, as I felt the last six months had been fairly brutal on my body and mind. Since January I had been in the ER five times, broken three ribs, had one particular episode where I was very close to almost dying, and had sustained a lot of mental stress surrounding my filing for Social Security Disability Benefits. How did that appear as doing well?

I guess it all depends on everyone’s perception of time. For the person who thought I was doing A-OK, well, I guess that was to be expected since they only saw me on my good days. No one wants to visit or support during the bad days, so most of my family and friends only see me on manageable, low-pain days. And if there were more of those days in their memory, then I guess a lot of time had been spent with me on good days. At least they were showing their support, however, by wanting to see me. They may have had a different perception of how I was actually doing, but at least they made time to see me often enough to draw that conclusion.

For my mom, who is my primary caretaker, my time has been marked as not so well. She sees the good, the bad, and the ugly. Now, in saying this I’m not inferring that my last six months has been a torturous journey. I have certainly had my good days, maybe even good weeks. But for us, the time marked is seen through a different pair of lenses. While this part in her life was definitely not chosen, my mom has done extraordinarily well in her role. I may not have even made it through to this time and place if it were not for her. My mom always has time for me. She understands more than anyone what I’m going through and does everything in her power to help and support me.

A friend of mine was recently saddened by a situation involving some of her close friends. It was made known to her, and apparently not in a nice manner, that  her presence was unwanted at a social gathering. Understandably, she was devestated by this. But upon comments from concerned friends, she lamented that while their behaviors were unsatisfactory, the people in question were still her close friends. I understood exactly where she was coming from regarding letting bad behavior slip by when it concerns people your known a long time. While having not dealt with the exact same scenario, I have on many occasions let people walk all over me, or treat me unfairly, only because of our history and the time spent knowing them.

The whole ordeal gave me a lot to think about, and actually plagued me with thoughts on it for a few days. My time, more so now than ever before, is precious. Because of this, I want to surround myself with people who want to spend time with me. Not because they have to, or because they feel obligated, and especially not if they feel guilty. But real time spent because of love, friendship, and support.

My lens, much like an hourglass, views my time like grains of sand, slipping through my fingers at the beach. I see it in front of me, clear as day, and yet there is nothing I can do to stall or slow it. And one day, the sand will all be gone, along with my pain.

 I have an old friend who works extremely long hours, with little to no breaks, and often for weeks at a time without a day off. She is very dedicated to her work, so her full schedule while hard, is not a deterrent. Because of this, and the fact that she travels a lot for work, we rarely see each other, often going months between visits. However, she always commits to making time to see me and catch up whenever she can, sometimes sacrificing her only day off in weeks to drive to my side of the island to take me to lunch. And when I object, which I often do as I’m concerned she doesn’t rest enough, she always tells me that

“You make time for the important people in your life, Christine. Actions speak louder than words.”

I cannot agree more with that statement.

I’ve always been a big ‘people person’. I have a lot of friends, a lot of acquaintances, and I’m constantly meeting new people. And while my disease has changed my life a lot, and I’m unable to make as much time as before to accommodate seeing all my friends, I make a pretty good effort. I’m pretty good at keeping to my social engagements, and even if I’m ill and have to cancel due to a pain flare or last minute doctor’s appointment, I almost always reschedule for the next day or the closest next time available.

I have someone else in my life, whom unfortunately does not make time for me, despite their insistence of how important I am to them. They make plans with me often, and yet there is always a last minute cancellation, with apologies all around, though sometimes there’s no explanation at all. As much as the world is in a rush, there is always time to make a quick call, apologies can take a few sentences at the most. Hell, they can even be texted. Anyone who says they don’t have the time is lying.This person often makes it very clear that I am to drop everything to accomodate them when their schedules clear, however if I ever have a request or an invite, they have no time for me. Frustrating… I can’t stand flakiness..

Actions speak louder than words.

Here’s where marking time becomes important. Whether you’re like me and have a debilitating disease, or you’re a regular Joe Schmo, your time is important. Your life is important. So the people you give your time to are also important. Why do we give our time to so many people who make it clear that it’s not as important as them and theirs? Why are we wasting our efforts on people who don’t return our love and support?

Is it because they’ve been around a long time? Does length of friendship or family history make it ok for others to walk all over us, or hurt our feelings? The answer is no. Family and friendship mean nothing if love and respect don’t go hand in hand.

Time is important no matter where you are in your life journey. We respect time, and in turn we should respect the time of others as well as ourselves. I realize that while my time may be limited, and my life span will unfortunately be cut shorter than others of my generation, my time is still important. So I need to surround myself only with those who want to play an active role in my life. If you truly believe you are an important person in my life, well… Prove it.


 

 

 

Thanks to all those who continue to read my blog and have supported me throughout my journey with Rheumatoid Disease. If you like to help support me on a final basis please visit my page at http://www.gofundme.com/sixthousandsteps

Mahalo

Should I or Shouldn’t I? A Dilemma of My Disease

When I opened my email inbox this morning I had a new article from Psychology Today, an online magazine that I subscribe to. The title of the article was “Should I or Shouldn’t I?” The Dilemmas of Chronic Illness, written by Toni Bernhard, a fellow victim of a chronic disease. The entire article was like an insight into my brain,  basically discussing the day to day difficulty we chronic illness patients go through trying to keep up with the rest of the world. I’ve personally dealt with these questions in my own l life several times, so I’ve taken the same questions Toni addressed personally in her article, and have answered them with my own opinions/feelings here. Perhaps it will provide insight into my life and actions that friends and family have wondered about..

 

Do I accept an invitation from a friend to get together or do I refuse it?

For me, this really depends on how far out the invite was received. If it’s weeks in advance I tend to tell the person that I’m interested in spending time with them, however I don’t know how I’ll feel that day so let’s make the plan tentative. I don’t want to flat out refuse an invite in case that person writes me off, and I don’t receive further invites. But at the same time, I hate being flaky. I would prefer a plan be tentative so if I’m not feeling well it was already suggested that I may not be able to attend. To be clear, I love spending time with family and friends, I just don’t always know how I’m going to feel.

 

Do I tell family and friends how I’m faring with my health or do I keep it to myself?

Sometimes, I feel if I talk about myself I’m worried they are tired of hearing it. My chronic disease is is a large part of my life, so the reality is if someone asks me how I’m doing, they are asking about my health. I worry about sounding like a broken record, but if I don’t talk about it, I’m isolating myself from others. My pain therapist often stresses how important it is to talk with friends and family about what I’m going through so I don’t risk getting depressed or bottling things in. Though, even with his advice, I find myself couching it a lot. Not telling people the true extent of what’s going on because I don’t want to sound like a complainer.

 

Do I try to look my best when I’m around other people or do I let my looks reflect how I’m really feeling?

If I try to look my best, I’m concerned that people will misinterpret the state of my health. I’ve always been really into makeup and fashions, and since becoming sick I don’t have the opportunity to dress up much anymore. So on days where I feel even remotely energized enough to make the effort, I tend to want to put makeup and a cute outfit on. But is this sending a message that I feel totally fine? Because there is never a day or even an hour where I’m not in pain, and or feeling the affects of my disease.

But if I let my looks reflect how I’m feeling, it usually brings my spirits down. I hate leaving the comfort of my home feeling dowdy and unkempt. Sure, I look exactly how I feel, but that means I look like crap. It brings my morale down and opens me up to more unwanted criticism, such as “Wow, you don’t look so good”, or “How come you don’t put some makeup on to hide those dark circles?” Vicious cycle.

 

If a special opportunity arises, do I go beyond what I know my body can  comfortably handle or do I play it safe?

If I participate, I could wind up stressing my body or becoming too exhausted, landing me in bed for days. If I don’t participate, I could be missing out on fun or uplifting life experiences that can keep my morale up.

I was recently invited to a fashion show style event, that some friends were running. It was planned weeks in advance and I was a tentative guest, not knowing how I would feel on the night in question, so I didn’t say yes definitively. I knew the event would be a lot of fun, many of my friends were going, and there was a lot of excitement surrounding it. However, I also knew the event would be a high energy affair, and be a late night. Even throughout the morning of the day of I was on the fence on whether I should go, but leaning towards yes, as I had been feeling quite isolated.  Unfortunately that day I had a lot of doctors appointments as well as clinical testing, and I was exhausted by late afternoon. I knew I could probably take a nap and still really and go to the event if I really wanted to. But knowing me, and knowing my body, it would have been a mistake. One that I may have had to pay for days on end. So I didn’t go. Was I said that I missed a fabulous opportunity to see a great show and socialize with friends I hadn’t seen in awhile? Of course! But health comes first, and I have to trust my instincts.

 

Do I try a new treatment someone is urging on me or do I take a pass?

I’ve talked several times about how often people urge me to try new diet schemes or anti-inflammatory treatments that they swear worked for their best friends hairdresser’s accountant and could for me too. It is very frustrating to have things like that constantly pushed in my face, especially when the person in question isn’t sick themselves or haven’t done the so-called miracle cure diet.

So usually in this case I take everything with a grain of salt. Sometimes I’ll do research of my own, looking through various websites and articles and reviews to see if these treatments really do work. However, I have to constantly remind these people who mean well that just because a treatment or diet plan worked for one person, it doesn’t mean it works for everyone. I mean if that were the case, our country wouldn’t have an obesity epidemic, because everyone would know the one and only diet that works.

I appreciate the sentiment and wanting to help me with my health, and my chronic pain, and my weight gain. But I’d prefer if everyone would just let my doctors do their jobs, and keep the “helpful suggestions” to themselves.

 

Do I pursue a new interest even though it exacerbates my symptoms or do I stick to my old routine?

If I pursue it I could be opening myself up to new interests and entertainments that can enrich my life. It could boost my morale, lower my depression, and have an overall positive impact on my mental health. However, depending on what it is, I could be causing myself more physical pain and exhaustion in the long run. Which in turn means days of bed rest where I’m exacerbating my symptoms, prolonging the pain and denying myself fresh air and movement.

If I choose not to pursue it then I could be cutting myself off from a healthy lifestyle change, that could be good for me long term. I’d also be passing up the chance to focus on something other than my health for a change, which in turn raises morale. It’s a slippery slope.

A great example of this is my adult coloring. Last year I was introduced to the now very popular phenomena of adult coloring. They now make hundreds of beautiful coloring books for adults with intricate pages of all sorts of designs. I lean towards the paisley and mandala varieties. I started out slowly, with just one book and a small box of colored pencils. But I loved it! And started doing it more and more, obtaining more books, a larger pencil set, and electric sharpener. I now have a coloring box that sits next to my couch, filled with 5 books of different designs, two boxes filled with a variety of colors, and two binders filled with completed pages. The coloring, while a great distraction from my disease, also calms me and is very therapeutic.

However, there is a downside. I have a chronic pain disease that mainly affects my hands and feet. And after an hour or so, my hands get too cramped to color anymore. But I love my hobby so much that sometimes I ignore the pain and discomfort and push through until I literally can’t move my fingers anymore, and blisters have formed at my knuckles. Every time I do this I know I should stop and just color another day. But my ocd pushes me to finish the page, and it’s so nice to do something so enjoyable.

I guess it’s different for everyone. But I’ll admit that I do cause some of the pain I contend with myself, just so that I may enjoy some creature comforts.

 

I understand that everyone deals with their disease differently, some things being harder than others, and it can be a challenge. Life is a challenge. I know that I just have to take one day at a time, step by step, and that I’ll find my footing and my path eventually.

 

If you’d like to help support me in my path and journey please visit my website here. Thank you for reading and sharing me experiences.