Coping with Chronic Illness

I don't have the luxury of worrying.

Stress triggers my symptoms. I'm not alone in that, stress is a fairly common trigger for many people with many illnesses. Over the years I've learned that if I get upset, that upset will exacerbate my symptoms and I'll experience a flare. I could end up with a CFIDS/ME flare (meaning exhaustion and pain), a PHN flare (lots and lots of pain), an insomnia flare (lack of sleep that in turn will make everything else worse), or a migraine (oh dear gods the pain). So when I say I don't have the luxury of worrying I mean that worrying will literally make me sicker.

So, yes, to me, worrying is a luxury I cannot afford. When something bad happens I have to disconnect from it. I have to do everything in my power to keep from getting upset. If I don't, everything gets worse, and I'm no use to anyone--not even myself--when I'm going through a flare. Because of this, sometimes people think I'm not upset or that I don't care. Because of this, sometimes people try to hide upsetting things from me. 

I wish I could afford the luxury of worrying. I don't enjoy worry itself, but I do wish I could participate in my life the way I used to, even in the bad parts. Tomorrow morning I'm going to get up and continue working on the papers that are due on Monday. I'm going to do my best to not think about what might be wrong with my husband's truck and how that might cause problems for us in the future. It won't be that I don't care, it's that I can't let myself.

This is how ableism hurts people…

This came across my Tumblr dash with the caption "This is how ableism hurts people…"

So one of my in real life friends unfollowed me today because she said I was too negative and she needed to surround herself with positive people and that I was too much of a drain, which I understand.  It’s not like we’ve been best friend since childhood and people have their own issues to deal with and I don’t fault her for that at all and I hope she finds the positivity she seeks, but it has kind of just reinforced my theory that I am quite alone right now, because once you stop being the fun person everyone met, and your troubles grow beyond a reasonable amount, you just aren’t really worth it anymore particularly when you yourself are really sort of mentally incapable of supporting anyone else because everyday is a struggle to be alive.  And you know, I have known that about myself for a long time, I just haven’t really had anyone say that to me until now.  You know, I’ve also tried to keep a lot of these feelings contained to this blog because I don’t want to be even more of a burden to my friends and family, and I feel like if I am just typing it that it makes my problems less so but then they became more of a burden to people who do read this.  I just don’t want to do this anymore.  (http://hotblondecocktail.tumblr.com/)

Yeah.

Friends and Support Online

Stephanie Kennedy at But You Don't Look Sick writes about her "friends in the box":

These people exist.  They make me laugh, they make me cry and they know just what to say when I don’t.  We are an online community, and while the stigma of “cyber friends” has softened and become more acceptable in the past few years, there are still those who refuse to see online friends as being “real”.  I can try to explain to my long time friend sitting in my house, that the aches in my muscles are intolerable to the point of gnawing my own arm off….but she’ll never know.  My Spoonie family knows…they’ve been there, the pain is real to them and they know sometimes there’s just nothing to say  to make it better.  That kind of inspiration isn’t found in the local playgroup or with friends at a dinner party.

Planning

The Question of the Week at Oh My Aches and Pains! is something that's come up quite a bit lately in my life: How Do You Plan for Special Events?

'Tis the season, as you know, and I've been trying to socialize with my family and friends as best I can. I'm also going to school and still riding the doctor-hospital merry-go-round. Frankly, I'm busier than someone with my health condition should be. I've mentioned before that people don't fully realize the planning that goes into my life, so I'm going to give you an example.

A few weekends ago my family and I went to the Jack O Lantern Spectacular at Roger Williams Park Zoo. Planning for this event, I knew a few things: it's a walking trail; it was outside; it would be chilly. The first thing I did was tell my family that I couldn't participate in any other events that day otherwise I would use all my energy prior to walking the trail. The second was to plan to dress in layers so as to stay as warm as my body needed to be so that the temperature wouldn't exacerbate my symptoms. The third was to spend the day before and day of the event resting. I slept as much as I could, I napped, I stayed sitting or lying down.

During the event I walked slowly and sat down as often as I could. Sometimes a family member sat with me, sometimes I sat alone. Everyone knew approximately where everyone else was, there was no rush. Because of other complications we didn't go to dinner afterward, as we had planned, but that worked out well for me because I was far too tired by that point.

I also knew that going to this event would make me extremely fatigued afterward and would lead to an episode of post-exertional malaise within the next twenty-four hours that could last for another twenty-four. This meant I had to do any assignments, chores, errands, etc., prior to Friday because it was likely I wouldn't be able to do anything at all until Tuesday. Not unexpectedly, I was sound asleep not long after we arrived home, was tired all Sunday morning and early afternoon, and by Sunday afternoon the post-exertional malaise had set in and I was in pain and exhausted (and asleep!) well through Tuesday.

Bet you didn't realize a few hour trip to see some pumpkins actually took four to five days of my time, did you? That's how it is for me with CFIDS/ME. And it's exhausting.

Back to reality.

Did you ever go on a vacation and when you got home at the end of it think "back to reality"? Yeah, me too. At least I used to. Now I just envy those of you who can truly get away from it all.

I would give almost anything to get away from my reality. Sure, I can take a vacation, but that isn't going to help since the reality I need to get away from is my own body. No matter what I do or where I go, I'll still have CFIDS. I can't leave it at home like you do most of your stressors when you go on vacation, it's going to follow me wherever I go.

Sometimes I get the impression that people think it must be wonderful to stay at home as often as I do, to recline in bed on a stack of pillows and just do nothing. I think it must be, too, if that's really all you're doing. But I'm lying here on my pillows with my whole body aching and feeling so tired I could cry. I'm desperate to find a way to finish my homework and I already know I've no energy to make dinner. To be honest with you, I should just call an end to the entire day and go to bed.

Boy, I said to myself earlier today when I realized how stressed I was, I could use a vacation. I could. But until they come up with Total Recall style virtual vacations I'm just going to have to take my reality on vacation along with me.

How The Chronically Ill Form Relationships Online

This post really struck a chord with me. I've met some wonderful chronically-ill people online, some who have the same illnesses I do, some who don't. But all have a similar understanding of what it is to be chronically ill and I can't stress how wonderful and valuable that is.

We want to find others with the same symptoms or diagnosis as ourselves, and upon making this connection we immediately begin spouting off our personal stories, complete with symptom progressions, medications, prognosis, and views on the future.

...It means information may be available about how to cope with many of the problems I face, and that it’s been around long enough for there to be data for use in framing a prognosis. ... I am guaranteed to find people I can talk to who I know will understand what I mean when I try to describe weird symptoms or processes I go through, and if they understand that must mean I belong. [Read more.]

It's lonely being chronically ill. In my case it's especially lonely because I have invisible illnesses. To look at me you'd think I was well. It's hard to get people to understand what's going on with me, maybe especially because they can't see the nerve pain zinging along my arm or the fatigue pressing down on me.

I've mentioned before that it's rare for someone my age to get Post-Herpetic Neuralgia. When you experience an illness that is generally not exerpienced by your age group you can feel abandoned. But you can also post about it on the internet and meet someone your own age with your own illness and the two of you can bond over something that next to no one else in your lives can understand. And that's valuable.

A #spoonie lunch invitation.

I received the best gift today. A chronically ill friend invited chronically ill me to lunch at a future date, saying as she did that she knew it was possible that neither one of us would have the spoons (energy/physical health and well-being) to go through with it. Spoonies out there know what I'm talking about when I say what a fantastic gift that invitation was.

Invitations for social activities come with such pressure attached to them. How do I explain that I might not be able to go, no matter how much I want to? How do I make my friends understand that my health is so variable that I can't give them a definitive answer? How do I make it so neither they nor I end up with a confusing mess of hurt feelings? I always explain, my friends always try to understand, but knowing right up front that I didn't have to explain because the person extending the invitation already understood (and knew I understood the same about her) is something I will treasure for a very long time, whether or not we actually do get to have that lunch.

Smile, smile, smile.

Let’s make a deal, you can pretend I am healthy, and I can pretend I am happy. I am sure it would work for some time… but would it really be working? Do you really care “How are you feeling” when you ask? There are so many things I wish people knew about me, but I won’t say, because you don’t ask and when you do, you’re not truly listening.

[But You Don't Look Sick]

Beautifully written, from the heart, about living with chronic illness.

Planning for chronic illness' ups and downs.

A healthy person can “push” himself or herself even when tired or even sick. But someone dealing with an illness cannot “push” anything without dealing with the consequences if they can even “push” at all.

I think what makes it truly confusing for those surrounding me or anyone living with a chronic illness, is that there are days when you feel like you could run a marathon. I look great, I have a smile on and I do more than most! Then as quickly as the energy came, it leaves in a flash, and you are left with nothing. You are completely depleted of any ounce of energy you had and are left with pain in its place. It is like living two separate lives, and it is so hard to plan your life according to an unknown schedule. You need to learn to accept help, even when you don’t want it. You have to learn to always have a plan B, and be prepared for the worst, while remaining positive and hoping for the best. It’s a difficult balancing act.

[My Roulette Kind of Life]

I was thinking about leading this kind of life as I looked over my Facebook Events this morning. All my answers are "maybe" because I just can't make promises. I never know from day to day how I'll be feeling.

Luckily, for the most part, my friends and family understand this. But even with that understanding it's still difficult for me to have to say maybe. I wish I could commit to things in advance and keep those commitments. I want to do things. I want to attend every class and be the life of every party but some days I just can't.

It's just as hard for me to understand as it is for those with their healthy perspective who are looking in from the outside.

Chronic pain and social space.

It’s hard to make conversation without ever mentioning anything remotely related to your chronic pain, because the thing about chronic pain is that it’s chronic. It’s not an abstract, it’s not transitory, and it’s not something you can leave at home when you go out to dinner. It’s part of your life, like eating and shitting and breathing.

So you are basically erased. You have to pretend your everyday life doesn’t exist. You don’t exist in that social space. What exists is a construct of you – a happy, shiny construct that has no pain. This often consists of memories of yourself before you got chronic pain. Or the parts of you that aren’t boring and irritating and discomforting and in pain. But it’s not the whole you, because that huge, chronic part of your life is a forbidden subject.

[Don't Talk About That!]