Just a Little Easier

Another sleepless night.  All I can do is sleep when I want to be up and doing things, but at night…nope.

I’m scared and alone.  I can’t stop thinking about the future and how I’m ever going to manage like this for any length of time.  I’m barely scratching out my survival every month, and it’s just not sustainable.  Pretty soon (the end of June) I’ll lose C for good, and unless I magically find a therapist, I’ll have no one left to rely on except Idiot Case Manager.  (I think I’m just gonna call her ICM from now on.  It’s easier.)

I feel like there’s something seriously physically wrong with me.  I mean, besides just the UC.  My energy levels are non-existant.  No matter how much water I drink, I still nearly pass out every time I stand up.  Sunday, I couldn’t get through an hour and a half of canvassing before I thought I was literally going to collapse.  I barely made it back to the car.  I’m sure this is somehow related to the UC–before my diagnosis, I was walking and running around 5 miles a day and doing intense martial arts training for around 6 hours a week.  I wasn’t an olympian, but I was in good shape.  Now I can hardly stand up.  Seriously, I had to buy a cane, and I STILL couldn’t finish my canvass.  All the tests come back normal (or as normal as they can be for someone with UC): iron levels, B vitamins, Vitamin D, thyroid–all normal.  My doctors just shrug it off: “Fatigue is pretty common with autoimmune diseases.”  But I see all these other IBD patients who run marathons or do martial arts or, you know, can be on their feet without collapsing.  I’ve spent a lot of time since my diagnosis talking to other people with IBD, and I’ve never heard of anyone else with this level of fatigue and weakness.  I don’t know if it’s the disease or the meds.  I kind of suspect it’s the 6-MP–I don’t recall fatigue like this before I went on it, and it’s gotten worse since the doctor on call upped my dose a few weeks ago.

I feel like I need someone who can look at this integratively.  I love my gastroenterologist, but he seems uncomfortable with addressing anything that isn’t directly related to my intestines.  My GP is also good, but when my tests came back normal, that was pretty much the end of it for him.  I can’t afford to pay out of pocket for any kind of holistic doctor, so I’m basically just shit outta luck.

I just wonder how I’m ever going to be able to function like this.  I was working part-time on the campaign, and now I’m barely able to do even that.  Most days I don’t leave my bed, although I do manage to spend a few hours sitting up.  I’ve got a stack of canvass packets two inches thick that I haven’t entered because I’m too fatigued to concentrate enough.  It’s not even difficult, just detail-oriented, making sure I enter the right data for the right person.  I could do it in bed, but I’m struggling even with that.

Once I lose C, I don’t even know how I’ll grocery shop.  Right now, that’s what she and I do on our shifts.  To grocery shop on my own, I’d have to take two buses each way and wait at stops with no benches, which right now is basically impossible.  ICM has made it clear, when I asked about help getting to the grocery store, that they “don’t do that.”  I’ve yet to determine what she actually does, other than make sure I’m still alive once a week and make comments that make me want to punch her.

I feel like I’m being left all alone in a world too big for me to manage, and no one even notices, let alone cares.

It’s just like when I was a kid.  My mother used to disappear sporadically.  It was always after one of her rages, and a lot of the time she’d threaten suicide before she disappeared.  She was never gone more than two or three days, and sometimes it was just for several hours or overnight.  But it started when I was 8 years old, and I had two little sisters to take care of.  I was never sure if she was going to come back, but I did the best I could to take care of my sisters.  We ate a lot of cereal, peanut butter and jelly sandwiches, and macaroni and cheese from a box, since those were the only meals I could make.  I learned not to think ahead because then I’d panic about what would happen to us if my mother didn’t come back.

It was the same way when my father was abusing me: just deal with this moment, and don’t think about the future or you will fall apart.  It was always about mere survival.  I couldn’t imagine things being any different because I was so small and he was so big, and no one even noticed what he was doing to me.

And now it feels like that same situation is playing out again.  I need help and compassion and care, but what I get is neglect or abuse.  I can’t think about the future because the hopelessness is too overwhelming.  There’s nowhere to turn.  No one will save me.  There’s no rescuer coming.  I am alone.

Yes, there’s something to be said for not expecting someone to magically save you or fix you, but I don’t think that’s what I’m doing.  At least, I’m trying to convince myself that’s not what I’m doing.  I’m willing to work as hard as I can to get better.  I’ve tried so hard for so long.  I don’t expect some idealized savior to come make everything better.  There’s this scene from The West Wing where two White House staffers are talking to a guy in a hotel bar, and the guy’s talking about the struggle to afford college for his daughter:

It should be hard.  I like that it’s hard.  Putting your daughter through college, that’s–that’s a man’s job.  A man’s accomplishment.  But it should be a little easier.  Just a little easier.  ‘Cause that difference is…everything.

That’s how I feel.  I don’t want my life to be easy–I would get way too bored.  I’m one of those people who loves to fight, which is why I’m so good at politics.  I’m willing to keep fighting for my life–that’s a real accomplishment.  But it should be a little easier.  Just a little easier.  ‘Cause that difference is the difference between “I think I can manage this” and “My life is so impossible that I have no viable choices besides killing myself.”  ‘Cause that difference is everything.



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13 responses to “Just a Little Easier

  1. Hope, this is such a sad article to read. But I have enjoyed reading your posts over the last few weeks, since you are are insightful, intelligent, and clear in the way you write.
    My younger sister had a severe autoimmune disorder that took her out of college and left her bedridden for about a year and a half. No doctor could figure out what was making her feel so weak, or what exactly it was at all. Eventually, she found a medication that worked, and after 18 excruciating months, it spontaneously started to improve. We still don’t know why it started or why it got better. Her experience taught me how difficult these conditions can be.
    Perhaps a large part of your fatigue and lack of energy is not only the physical problems , but also feeling that no one cares. I have felt that way; it’s so horrible… eventually, if not reversed by contact with people who care, the hopeless state drains a person so that they lose a lot of their will to fight.
    As I mentioned before, I’d like to be in touch and hear what’s going on with you more. Maybe you find it hard to trust or believe that. But, perhaps you should confront yourself with the fact that there are people like me reading this article who do care and have offered to help in what small way they can. So, I encourage you to reach out to me at bpdtransformation (dot) gmail (dot) com . Who knows what good could come out of it? – Edward

    • I don’t think my fatigue is psychological at all. I’ve been in worse situations than this and never had this level of fatigue.

      And I don’t think that no one cares. I think that the people and agencies that could help me don’t care. There’s a big difference there. It’s nice for people to care, sure, but that only has limited usefulness. People caring isn’t going to pay off the medical bills that collections agencies are calling me about. People caring isn’t going to pay for my expensive diet. People caring isn’t going to fix my immune system. People caring is not going to eliminate the prejudices that say people like me don’t deserve to survive and don’t deserve adequate benefits to allow them to survive.

      Contact with people who care is helpful, yes. But what I need more than warm fuzzies is concrete solutions to concrete problems.

      • Hope, I expected you might respond like this. I would probably feel the same way. I remember feeling dismissive toward people whose concern felt useless in the face of my concrete problems.
        May I ask, do you have no close friend or family member who is willing to loan you money or contribute to your care? Usually a parent or relative might be willing to help. I only speak from my own experience, of course. Perhaps you have no one. Or, are you unwilling to ask people who might help? No offense intended.
        Secondly, why don’t you start a kickstarter or donation site so that people who read your blog and want to donate a small amount of money can help you financially? I would contribute something. There’s no shame in that, and I would do it for myself if I needed to. In the news I recently read about someone who made such a site, promoted it, and got thousands of dollars in donations in a couple of months.
        Yes, there are horribly prejudiced people (especially some Republicans) who have those attitudes. But, I think few of them actually believe that people like you don’t deserve to survive. However, they are ignorant and have utterly distorted views of what needy people really experience and what they are capable of doing for themselves. Many such prejudiced people just don’t know better, unfortunately. Although it may not be a very practical difference, there is a difference between that attitude and saying that people don’t deserve to live.

  2. I can’t do much to help but know I care. I think of you all the time and always want the best for you. Xoxoxo. Keep trying, keep fighting. Much love from me. Xox

  3. Ahhh Hope! I wish there was some magical fix, but there rarely is, you and I both know. I feel sad that you have to go through all of this. It really sounds truly awful and there’s not much I can say, other than to keep on keepin’ on. Which, I know you will. If you ever need someone to hear you out, feel free to email me and I’ll talk through things with you. Unfortunately, that’s the best I can offer.

  4. kat

    i so understand what you are saying, where you are. and i do so agree, that life should be hard, but not so hard that your only choice is suicide. i would like to tell you that in time things will get better, but i don’t really know that. i know for me after 8 yrs, things are looking better, but that during those 8 yrs i felt pushed to the wall as if there was no other option besides suicide. just keep working forward, trying to get better care, to feel better and stronger, and hope that in the meantime, something will give, some new med or treatment, something. i am sending you lots of (((hugs))) and support and soothing thoughts.

    1–can you apply for Fed disability (that is, Soc Sec disability) If you get this, you will also get Medicare. If you are poor enough, you will also qualify for full Medicaid, so all your health care would be covered. i know it takes a while, but if it is for physical illness, then it goes faster than for mental illness.
    2–can you check with your local DHS (dept of human svcs) to see if you qualify for food stamps (and when you fill out that app, it automatically searches to see if you qualify for any other programs, like SSI ((Supplemental Sec Income, which is separate from SSDI-you get one or the other)), or Medicaid, which you may qualify for while waiting on fed SSDI (soc sec disability) and you may qualify for even without being in the process of applying for SSDI–with new Obamacare, many states are now offering Medicaid benefits to childless working age individuals who are poor enough.
    3–State Disability–if you dont qualify for SSDI after all, or if you need help while waiting on SSDI decision, if you go to your state DHS office, you can apply for state disability (you would only be recognized as disabled in that state, and the monthly amount is not based on your years worked as it is with SSDI. SSDI follows you wherever you live). But if you qualify for state disability, you get full Medicaid (all healthcare is covered).
    —-So, apply for SSDI, When you apply for SSDI initially, you can do it online, but after that, you should contact a disability attorney. don’t worry, you don’t need money for them. i recommend Binder & Binder (a national firm) but you can also look at regular local attorneys who do disability law. No disability attorney will ask for money, unless you win your case and get SSDI benefits. Then, they will take between 20-30% of your total award amount from SSDI. apply at DHS for food stamps and medicaid. apply for state disability at DHS. You can apply for most of this online, never even have to leave your house. you will probably also need a scanner to send the documents they ask for to them. or you can just use regular mail. some states require renewal once a year, while others require it every 6 mos. they will send you a letter saying you need to renew, and what you need to send to them to do so. They have expedited processing if you are in real need of food, or medical care. they also have a list of state food banks/pantries/boxes, in addition to a list of other non and for profit food dispensaries, like from churches and others. Most food places do not require any ID or proof, and you can go to most of them once a week. so, if you can find 4-5, then you can have a lot of free food to help your cash go a little farther on other things. you don’t have to be disabled, or on medicare or medicaid or show any kind of proof or ID to use any of the food box/pantry/banks. just go there and take the box of food. people can go for you as well. or, take your case manager or C or whoever and then you both can collect the food (and you will get 2x as much!).

    i really really hope some of this information helps you stay afloat, at least for now, and that that will then help you get your long term situation sorted out too. SSDI is longterm (it takes about 1-2 yrs, less for physical disabling illnesses), and could help you for the rest of your life to be stable. state disability is more a medium term, probably takes less than a year to process, and if approved, you get medicaid. while for right now, you can probably get medicaid, food stamps. and for as long as you need/want, you can utilize all the free food locations.

    hang in there. good luck. hope this helps.

    • I’ve got SSI/SSDI. I’ve got Medicare and Medicaid. I’ve got food stamps. I’ve been to the local food bank, but I can’t get there regularly because it’s not on a bus line, and they usually only have a few things I can eat anyway. I’ve pretty much got everything offered to poor/disabled people, but it’s still not enough. And the people in power know that it’s not enough. Most of them just don’t care.

      • kat

        im sorry. im sorry i couldn’t help. i’m sorry you have to go through all this. i’m sorry it seems the light ahead has been obscured. best wishes to you, keep fighting.

  5. All that shit really sucks hope. I hear your deep pain throughout this post. I hear you and I am sending you hugs. That’s all I can do from so far away. Just know that you are thought of by us. XXX

  6. That fatigue sounds terrible. It sucks that they can’t figure out what’s causing it. Have they checked your vitamin B levels? I’ve heard that people have had those go low and it’s caused fatigue.

  7. They’ve checked my B levels, my D levels, my iron levels, my thyroid levels, my hormone levels. Everything just comes back normal, so then the doctors act like it’s no big deal. I can’t stop thinking that something is seriously wrong. It’s getting worse and worse, and it happened pretty quickly.

  8. bginbama

    Hope – I’m not one to offer advice or try to solve other people’s problems but there has been something on my mind about your situation for while now so I decided to share it with you. I saw a documentary about a singer who described very similar symptoms to yours that went on undiagnosed for years and even devastated her career. Turns out it was lyme disease and no one thought to check for it. Anyway, just a thought with much care and compassion behind it! cheryl

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