Welcome! My health problems add craziness to my life. Here I post ideas I've tried, also questions I'm still asking. I have an electrolyte disorder. So I have crazy neuro stuff like complicated migraines, alkalosis, loosing my speech and paralysis. (including legs and hands) Little by little, foods had to go, they affected my brain and immune system. So I avoid like the plague: soy, dairy, gluten, nightshades, and try to avoid refined sugar. My body requires pink salt and electrolytes. I now use a speedy red wheelchair that I love. I've craved a simpler life, but how do you do that with crazy health stuff? I've already had a fire and flood, so I really don't value possessions. I value people and experiences. I am not compensated for any posts, just my opinions.

Monday, December 26, 2016

Complicated Feelings: chronic health

I wanted to share my perspective and some honest feelings and opinions regarding chronic health issues. I'm reading/hearing most people with chronic health problems struggle with their feelings and wonder if they should feel the way they do. I consider myself a generally happy person. So people are surprised when I say stuff annoys me or makes me mad. Many people think they aren't allowed to feel these things, they're already enough of a burden, so they carry a lot of guilt. Feelings are often extremely complicated, hard to understand, and feel overwhelming on bad days.

I feel like I can be really patient with others. But I'm not very patient with myself. Annoyed at myself because I get so tired doing stuff I'm sure I could've done for hours when I was 5 years old. The last few months I've had major digestive issues. I was really discouraged and impatient because I worked so hard at making healthy food choices, working around my difficult food allergies and copper issues, ... yet I kept getting incapacitated spending way more time stuck in bed than I wanted; trying not to the think about all the stuff I was supposed to be doing. Each day, I felt I was getting more behind in responsibilities, and no matter how hard I tried to not think about it, it kept making my body worse. Then that annoys me, that I couldn't process those feelings, so then my body rebelled. It's a bad vicious cycle to be in.  I found some good video clips about digestive problems for wheelchair users (another post soon), and saw the problems I was having took people with spinal cord injury a year to really recover and get in a good body rhythm. How long should it take me, since I don't have a spinal cord injury? No idea. But I realized expecting to have my problem resolved in 2 weeks wasn't very realistic when it takes some people a year. Having a more realistic time frame helps me be more patient with myself.

I've been working really hard a few months now with exercising and food. (another post on that soon too) I built myself up gradually, to being able to do an hour of exercise a day. Then I woke up one morning last week and couldn't lift my arms up. I could barely sit up in my chair. For 3 days, no matter what I tried, my body refused exercising. My muscles kept shutting down within two minutes of trying. Not exercising seemed to make my bad disks flare up. I  kept trying not to cry at everything because I was just so frustrated! I only wanted to go forward, I didn't want set backs to where I was physically 6 months earlier! Then I had to rationalize with myself that I didn't waste 6 months of exercises, that this wouldn't be permanent. I was messaging with a friend, who had just had these same challenges the week before. Talking with someone else who understands really makes a difference.

Here's some jumbled thoughts and opinions, in smaller pieces: 
  • I've read many times that when life altering things happen, we need to let ourselves grieve. Even if we haven't had someone we love die, we are still allowed to grieve without guilt. When someone gets in a car accident and is paralyzed for life, they need to grieve. Here's a definition of grief: http://www.dictionary.com/browse/grief
    • 1. Keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret.
      2. A cause or occasion of keen distress or sorrow.
      3. (idiom) come to grief: to suffer disappointment, misfortune, or other trouble; fail:
  • We can mourn the plans we had to change, that life won't turn out the way we wanted. We can feel disappointed that we can't do stuff like we used to.
  • Having to change how we do everything is really overwhelming! It does cause exhaustion, stress and distress. That stuff can consume most of our thoughts for months! I don't think we can really avoid those feelings.
  • Comparing usually isn't helpful, unless it's to try to understand typical time to recover, or looking at someone with a similar health problem to see what they found helpful. It's important to keep flexibility for your differences in mind..... If you need a cane, and your friend uses a wheelchair, ...you both have needs. The important thing is to each have your needs met, the best way for you. Just because someone looks worse off than you, doesn't mean you should deprive yourself of the help that you need. Trying to justify why you should just get over your "insignificant problem" only causes you harm.
  • We can feel we failed that day. We can feel it was a bad day, and just try again tomorrow. A bad day doesn't mean we are a failure. It just means we had a bad day, and we're allowed to have bad days. We're allowed to have several bad days in a row. We can also look for nice things during that time, like seeing a rainbow, seeing a toddler smile and wave at you, watching birds play in a puddle, or smelling roses and lilacs. 
  • Every one processes thoughts and feelings differently. We don't get to pick the speed others process those thoughts. We can't rush anyone to grieve so they can move on with their life. We each have different speeds we need to go, no one processes things in the same way.
  • I don't think anyone should tell you how to think, feel, or react; and we can't choose how others think, feel or react. 
  • Sometimes family and friends can be hurtful. Sometimes we misunderstand what they meant. Sometimes we want the same thing, to have a better life, but have different opinions on how that can happen. Sometimes knowing you have the same goal lessens the bad feelings.
  • Sometimes people feel awkward and don't know what to say to us.  Will they offend us if they say "go for a walk" when we can't? It helps to tell people where you stand. I explain that sort of stuff doesn't bother me. I tell people I prefer humor, and that I prefer to hide out in the background. 
  • People may disagree with your health choices or tell you that you are wrong. They don't live with your body, so ultimately your opinion is the most important and most correct regarding your body. 
  • When we're sleep deprived and too tired to make food, we can get extra cranky or extra sensitive.
  • We can be surrounded by people, even people we love, and still feel lonely or isolated. 
  • When my electrolytes plummet quickly, not only do I physically feel awful, crazy emotions pop in my head. I can feel angry, lonely and like crying for no reason. No thoughts attached, just a surge of unwanted feelings. When I feel that surge of feelings, followed by the thought "I'm going to barf!", I get to my electrolytes as fast as possible! As soon as I balance, those feelings go away. That's my body's warning sign that I need to fix my electrolyte levels fast.
  • We can feel angry and its really OK.  I just need to be left alone to blow off steam and work through it by myself. I usually don't stay mad very long. Most of the time, if I can just say something makes me mad, be left alone 10 minutes, then I can then move on to the next thing in under an hour. I can be mad at nothing specific, or just feel mad that I don't know how to get unstuck from that moment, or that I want to be able to do it myself but don't know how. (impatience) I'm usually not mad at the person I'm talking too, unless I specifically say, "I am angry at you for this ____".  Anger at feeling limited, usually makes me want to fight back, in a good way, to not quit.
  • When I'm overloaded about new health things I have to deal with, my body shuts down, and I need to just stare at a wall and do nothing,...for hours. Once I get through that phase, then I'm ready to tackle books, whatever I can read, to figure out how to fight back. That phase usually lasts a few days. Then I feel ready to try new things. Finding out I was allergic to nightshades about 5 years ago was really overwhelming. I felt overwhelmed for a few months. But I recently discovered Vietnamese food doesn't use any of my many food allergies. Except sometimes peppers which can usually quite easily be left out. I'm now a huge fan of pho!
  • Getting stuck in bed for a few days gets really discouraging. It's when I feel most alone and bored. I don't want to hear or see electronics because I already feel sensory overload. I can't get in a car like that, so I feel rather isolated. I get dependent on my family during these rounds and don't like that, I like to be independent. It's easy to worry about how long I'll be stuck like this, or if I'm being too big a burden. Is this a new permanent problem? I'm too tired to think of plan B.
  • Escaping is good, for awhile. Until we can process feeling yucky. Then it's nice to live life in the moment. I like to escape by reading historical fiction novels. I'll also watch videos and read biographies about other wheelchair users to try to get ideas for adapting. So when I'm feeling better, I'm ready to try stuff!
  • Even after years of this, I still feel guilty cancelling stuff last minute, or arriving late. I get up and get dressed every morning and try. Sometimes I make it to the car then suddenly start throwing up from alkalosis. I know there's only so much you can do, but I don't like feeling like I'm not dependable. It still stinks.
  • I've learned that while playing a stringed instrument, you need at least a temporary grip on your emotions if you are playing for other people. If you're mad you can't get that note, you can hear those feelings in the song. I think playing an instrument gives a healthy outlet to process feelings.
14 Questions I ask myself (periodically reassessing):
  1. If you could change things, how would you spend your time? Not the answers people expect you to give. But if you had 10 hours of free time a week, how would you spend it? Would you take a music lessons? paint? learn cake decorating? join a sports team?
  2. What is the most important household stuff to help your day run smooth? Can you hire someone or reward your kids for helping with these extra things? Top 3 things for me right now: 1) a clean kitchen (meals are hard enough with a clean kitchen); 2) clean floors (sticky stuff sticking to my wheels makes me irritable very fast); 3) clean, unwrinkled laundry. (Trying to get dressed without clean clothes in my dresser can be unnecessary stress. And wrinkled stuff doesn't work with my sensory skin issues.)
  3. What do I need to get to, and how can I get there? Doctor appointments, meetings, they go on our Google family calendar, that shows up on everyone's phones. As I add things to the calendar I first check on transportation with my family. There isn't public transportation right by my house. I do have some things I'd like to do in DC. When I get better, I know I can be dropped of at the train station, then feel independent by getting around for the day on public transportation. 
  4. What things can I do when I need to decompress?
  5. Which friends/family can give me a sympathetic ear then make me laugh about stuff? Which friends/family can help me readjust my expectations when I'm impatient? 
  6. What stuff am I good at, that I can still do when my body wants to shut down?
  7. What stuff am I feeling guilty about?
  8. When I'm annoyed about having to depend on people, (or embarrassed about something), how does my family feel about that? Ask very specific questions. Most the time I find out I'm the only one annoyed by that issue, and I'm surprised how they feel.
  9. If I only had energy for one responsibility today, what would I do?
  10. When I have a bad day, did I try my best? Do I feel it was enough? Does my family feel it was enough? They're usually nicer about this than I am.
  11. How else could I do this same thing? Ex: bad hand day adaptions, order online if grocery shopping is too tiring, etc.
  12. Is this thing or idea worth my limited energy?
  13. What things calm my body/mind quickly? For me right now: Listening to violin music, stretching, sewing, puzzles, reading books, decompressing by sitting still in a dark room for 10 minutes...
  14. Do I want to try something new? New food? I've always been terrible at sports, but I'm wanting to attempt wheelchair tennis with my husband when the weather warms up some.
Feelings are complicated. I think it helps if we give ourselves permission to just feel things, even if we don't know what to do with the feelings yet. They can affect us physically whether we want them to or not. Trying to  ignore them doesn't usually resolve things: Instead it can make us feel stuck or hold us back from joy. Life also doesn't pause until we get a grip on our feelings. We may still feel overwhelmed trying to get a grip on our feelings when a family member is diagnosed terminal, or deployed, or we get a new injury, loose our job, have to move,....Adapting can be hard, and it's normal to feel it's hard. Normal to feel disappointed, mad, hurt, left behind, deficient, misunderstood, frustrated and lonely. But we can feel better knowing it's normal. That it will get better. Even if we have a progressive illness, it will get a little easier when we figure out how to adapt to the latest problem. We may have more bad days than good, but that doesn't mean all days are bad days even though it may feel that way. And one day can have good and bad things through out the day. I once had a horrible day that kept getting worse as the day went by. A friend showed up surprising me with a delicious bowl of soup that was free of all my allergens...that changed my bad day to a great day! Finding people to love, and doing things with people makes life more meaningful. Trying to work through our feelings lets us grow. It helps us see the good things in life. Therapists may be needed. Friends and family are also very helpful , and sometimes they are enough. Thanking people for their help and time really helps.  Is there anything better than spending time with someone you love, an unconditional love that goes both ways? It means you love each other on bad days too. I know I am very lucky and blessed to have the husband that I do. I also know a best friend or close sibling can make all the difference in happiness too. On my worst days, these are the thoughts that keep me going and keep me happy. It's so worth making the effort to nurture our relationships!

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