5 challenges, 5 small victories #HAWMC Day 27

Prompt for today:  5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

I think this is a very good prompt, and normally I’d be able to write it very easily, but the depression I’m feeling right now will make this more difficult.  (yes depression, but it’s deserved, I’m not clinically depressed at the moment.  I’ve had a lot to deal with, and the loss of a loved one, so I’m depressed.  Please no worries about my sanity. *smiles*)

A Difficult Challenge - Deciding on treatments.

5 Challenges – 5 Most Difficult Parts of My Health Focus

  1. The constant changing.  Things seem to be settling down, and wham I either get new symptoms or a whole new diagnosis.
  2. Making hard decisions.  Do I get the surgery that may help?  Do I try to live in the deaf world?  Do I take this drug even though it has some harsh side effects?  Do I get another opinion…..
  3. Keeping Positive.  OK, I’m not doing this very well right now, but it will get better.  I know it will.  (there see still positive! I just think it will take longer this time.)
  4. Risking leaving home.   This sounds like I’m afraid to leave home, and sometimes I am.  I have vertigo attacks with no warning.  If I’m more than 30 minutes from home and have an attack start, it terrifies me.
  5. How to keep my caregiver from burning out – How to keep my marriage strong through all of this.

A small victory, a night when I can cook.

 

5 Small Victories – 5 list for the little, good things that keep you going.

  1. For dealing with the constant changes.  I decided long ago that life isn’t going to be as I expected, so I decided to change my expectations.  I’m usually pretty flexible now at thinking, well this will change some things…what will it do, and how can I change to keep myself going.   (I will admit here, I’ve had a new diagnosis that has thrown me for a bit of a loop, the treatments are hard, the decisions are hard.  I haven’t quite gotten to the point where I feel I can think about my new expectations, I simply don’t know what to expect…but when I do, things will fall in order I’m sure.)
  2. Making hard decisions is still difficult, but I feel better about it because I know how to look up many resources, I know other people (on-line) who have the same issues I have so I can ask them what their experiences have been, and I’m very lucky to have a husband who helps me weigh the pros and cons and is able to look at things objectively.  However, he always leaves the final decisions up to me.
  3. Keeping Positive.  –  This hasn’t been a hard thing for me until recently.  I get a bit upset about things when things change…I’ll have a pity party.   Then I say “Enough!”  And start thinking of how I can stay positive.  I think of things I can still do.  I think of others who are going through the same thing, and know many of them help me see that it can be alright, and I want to help others know that too.   Yes, again, recently this has been hard.  I’ve had a lot dumped on me in a relatively short period of time.  I’ve lost a lot.  But I have no doubt that I will get back to the positive me.   I still believe in living every day you feel well enough to the fullest.  Even if that means just sitting out in the backyard.  Do not take things for granted.  And try to think of something you are grateful for every day.  Sometimes I write the same thing every day for a few days because that’s all I’m feeling grateful for that I can think of….but other days I can list many things.   (Toni Bernhard’s book How to be Sick, has helped me keep positive thoughts, and helped me to look at things a bit differently…I highly recommend it!)
  4. I risk going out of the house much more than I used to.  I’m still afraid of having an attack, but I carry an emergency kit with me all the time.  It contains emergency meds, water, wash cloths, small trash bags to throw up in, some Zip-Loc bags to put cloths in after being sick…..things like that.   I’m still a bit leery about going more than 30 minutes from home.   When I have an attack it is not pretty.  I feel humiliated and degraded.  I can’t stop throwing up, I can’t walk, I often have diarrhea, and cannot control my urine.  So I recently decided if I’m going on a longer trip, I will need to wear disposable adult incontinent panties….just in case.  If I have an attack in public, I do not want to be mortified by strangers seeing me defecate and wet myself.  I also always carry emergency medication for migraines.    These measures may seem a bit drastic to some, but it has made it so I can go out and not be terrified that if I have an attack I will be left with no help.  I also carry my phone with me all the time and it has an emergency button if I need to call 911.  I won’t be able to hear them, but I can tell when they pick up and tell them what is happening, and where I am.
  5. Making sure my caregiver takes care of himself, and keeping our marriage strong.  This has been a bit difficult.  My husband will not admit that caring for me wears on him.  He will say sometimes he feels weary then he thinks about what I’m going through and it goes away.  He also says it is an honor to care for me.  He loves me so much, he feels honored that I trust him so much with so much that he has to see.  He never gets grossed out, and always makes me feel loved, even during the most degrading moments.   We keep our marriage strong ….in many ways.  I thank him every day for the things he does, and when I can do things, I do.  I try to do little things he really likes, for example when I can cook, I try to make things I know he loves, and that is healthy.   In many ways my being sick has brought our marriage closer.  One BIG thing we do, we see a counselor together.  Sometimes we individually go in, but normally we are together.  We can say things there and it’s safe, and if we thought it might hurt the other, she can defuse it and make us understand where it’s coming from.  This has made a HUGE difference in how we treat each other.

We also take advantage of my good days. We even try hard on the bad days.  We always show each other that we care.  We curl up together, we massage each other (I admit I get more than I  give here), we go for drives together….and on special nights when I’m really feeling good, we go on a date.

 

This was easier than I thought it would be.  I do still have some positive outlooks still in me.  Yes, I’m depressed, but I should be, as I said before.  I think the only reason I haven’t been able to deal with the latest diagnosis (Intracranial Hypertension) is that I’m getting conflicting news from different doctors in my team.  And I just don’t know what’s going on with this….my migraine specialist thinks most of my symptoms are caused by migraines.  So the IH, may not be a big deal right now.  But the medication for it is still helping, so that says I should have it….but I’m confused.  So confused.  But I’m positive, it will get better.

So yes, this was a good prompt.  It made me think about my health issues, and it made me look deeper about things than I had been.  I’ve only been dealing with the overwhelming emotions, not the thought process behind them.

So thanks WEGO HAWMC team for this prompt!

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7 thoughts on “5 challenges, 5 small victories #HAWMC Day 27

  1. It posted! I miss you too. We should get together soon. It was a nice night, thank you for all the work you did that night, hope the dinner was worth it! : )

    love you.
    w

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  2. Great lists, lady! I think being aware of the strain on your caregiver is a huge plus. Can’t take them for granted. And you don’t! 🙂 🙂
    Staying positive can be difficult sometimes. You do have a right to grieve, though…and should. This too shall pass. *hugs*

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  3. Wendy,

    Exceptional insight into all the issues you deal with. Great to know you prepare yourself with all the necessary things to go out … and just do it! Don’t worry about what others think. Sad, our society doesn’t tolerate ill people in anyway when it’s visible. Don’t let that keep you from leaving the home, because all you can do is prepare yourself in case something happens. You’ll become more confident over time. Two decades later, and I have vision problems with significant vertigo…it’s never changed, but get worse at times. Just keep on moving and you’ll adapt to it, when others wouldn’t know how to adapt to a couple episodes.

    Your marriage is built on the commitment in sickness and in health and your husband took the vows seriously as you did. Every marriage should be to that level. Happy you are going on dates and I notice when you can cook you do something special for your husband. Our marriage will celebrate 40 years, because we took our vows seriously and are devoted to each other.

    Surprisingly, when you mention “when I can cook” believe me I get it. I don’t cook often, but I can cook and I love to but my life doesn’t allow it. Do you get asked why you can’t cook?

    Decisions are very hard especially when they involve your health. Actually, it’s great that you are thinking them through so carefully. Is it that decisions are hard? Or are they hard decisions? Something to think about.

    I’m happy you are positive. It takes an optimistic person to make it through chronic health issues. Keep on smiling and laughing!

    Take care and stay safe,
    Edie

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    • Edie,
      Thank you for such a thoughtful reply.

      I do feel better now that I’m learning more ways to prepare myself. Yes things may happen when I’m out, I may be mortified that others see me that way…but I’ll be as prepared as I can be, and I will not stop living my life because of this illness. (although it has gotten in the way of some things…so I just try to change those things to something I can do differently, or more of)

      One thing I’m most grateful for in my life is my marriage. We try very hard to not have my illnesses take over our love life…so to speak. Some interfere, but we are so close. I can’t imagine not having him in my life.

      No I don’t get asked why I can’t cook. But I love to cook, so it’s hard not to. And I have so many food intolerances, it’s hard to eat healthy and safe if I’m not cooking. Stuart tries, but he gets exhausted. Luckily, we have learned to use the slow cooker much more. It makes things so much simpler…and possible for me to cook sometimes even when I couldn’t other times. Stuart’s also getting much better at cooking….I think he’s proud of that. It’s nice when we get to cook together.

      About the decisions….both. Sometimes it’s just so hard for me to make any decision…other times especially with my health issues…the decisions are hard. Very hard. and confusing….but that’s the nature of this type of thing isn’t it?

      I’m trying to stay positive and optimistic. I lost part of if for a while there…but I feel it coming back.
      Think I just need a little rejuvenation time for me. Reflection. Meditation. ect. I need to pay a bit more attention to the spiritual side of me, I’ve been so wrapped up in the sick, and mental side.

      thank you again
      and always
      stay safe.
      w

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      • You’re doing well Wendy given all that you are dealing with. Do know to expect that things will always fluctuate, so don’t be too hard on yourself. Just as you get settled into one thing, another might come you’re way…but eventually you’ll get use to the unpredictability of health issues.

        Change the things you have the power to change and prepare yourself to enter the world in confidence regardless of one’s circumstances. You are not a lesser person because you have health issues…you are a stronger person because you have to learn how to live life and deal with them as well.

        Slow cooker is the best way to compensate for a healthy meal and conserve energy. I can’t count how many I’ve been through. We’d starve otherwise!

        Blessing to you and Stuart.
        Edie

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  4. Pingback: #HAWMC Day 28 – 5 Challenges & 5 Victories | Picnic with Ants

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