#HAWMC Day 28 – 5 Challenges & 5 Victories

Today is Day 28 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

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.

5 Challenges5 most difficult parts of my health focus:

fear

  1. FEAR- My number one challenge is Fear.  I’m afraid of the vertigo.  Of course I’m afraid when I’m having it, but I’m constantly afraid I will have it even when I’m not.  I’m afraid of the pain, the migraine pain, the arthritis pain, all of the pain.  I’m afraid the pain will get worse and I won’t have any way to manage it.  I’m working through some stuff in my past and I’m afraid of what I’ll find out.  I’m afraid of more than I like to admit, but I’m working hard to be less afraid.
  2. Finding Doctors – I’ve had a difficult time finding doctors that treat Meniere’s Disease.  Even if they say they do, they often have little knowledge of the disease.  It’s also difficult to find a doctor who knows a lot about migraines.  It has been difficult to find good doctors to treat me.  In each field I’ve felt I’ve found a good doctor, only to be hit with the “I can’t do anything else” line soon.  It is a definite challenge to find a good doctor.
  3. Freedom taken away – Isolation, is a big challenge.  Since I can’t drive, I have to depend on my husband to get me out of the house, this is a difficult thing sometimes.  He works hard and when he is at home sometimes he has things to do here, or he just wants to relax, he doesn’t need to be taking me out all the time.  Plus I have to get over my fear of having vertigo in public before I can go out at all.   My freedom isn’t just taken away because I can’t go out, it’s also taken away at home.  Because of my illness doing certain things are not only difficult, they can be dangerous.  I can no longer cook because it’s dangerous.  I can’t take a bath or shower by myself, because it’s too dangerous.  It’s very hard for me to do any housework, sometimes because of the danger, sometimes because of the fatigue.
  4. Friends – It is a challenge to keep friends, and to make new friends.  Many of the friends I had before I became ill are not in my life as much now.  (various reasons, but let’s face it, I’m a different person.)  Making new friends is a huge challenge.  (I wrote a post about this, Making Friends?.
  5. Food – Food has been a challenge for a long time.  I have had GI (Gastrointestinal) issues for as long as I can remember.  Then I found out that I have Fructose Malabsorption, IBS, and a wheat allergy.  I have a specific diet I must follow so I won’t get sick.  This makes it hard for me to eat out, or to travel.  It’s hard to explain to people, “oh, I’m sorry I can’t eat that lovely meal you prepared”  It used to be hard to explain why I can’t eat wheat, now it’s really hard explaining why I can’t eat onions, apples, and all kinds of things.

5 small victories – list of 5 little, good things that keep you going.

wedding-love

  1. Successful marriage – This isn’t a small thing, this is a HUGE thing, but it’s what helps keep me going.  My husband and I both agree when we think about it we don’t feel that we work hard on our marriage, it’s just something that comes natural, but that isn’t exactly true.  We do work hard, it’s just something we want to do, so it doesn’t seem like work.  When I first started losing my independence it was very hard on our relationship.  I shut him out and he didn’t know how to talk to me.  We decided to see a therapist.  It was there that we learned to communicate again, and we both have a better understanding of how to deal with my illnesses.  If I could give one bit of advice to any couple going through one partner becoming ill, it would be to get a therapist. It might just make your marriage better.  I know mine is.
  2. Days I can deal with vertigo alone – this is a big victory for me.  When I start to have vertigo I panic because I never know how bad it will be.  See number 1 under challenges, and you will know, I’m afraid!  So going through a vertigo attack without help is a huge victory for me.  I’ve done it a few times, where I’ll have vertigo when hubby is at work and I don’t callv him home.  This doesn’t happen often, so this is a small victory, but it’s a big victory really, every time it happens.
  3. Making new friends – I’ve made many new friends on line.  I have a hard time meeting new people in person, but I’ve found that I can meet some wonderful people on line.  I’ve made some wonderful friends through my blog.  I have one friend that I met through my blog about 7 years ago now, our friendship has transcended the blogosphere.  We email, text, and send packages to each other.  We have called each other, but I can’t really talk on the phone.  One day I hope to meet her.  I think this is a pretty big victory, to go from losing friends to gaining such a deep friendship with someone I’ve never met in person.
  4. Getting out of the house – There are days I can fight through the fear and get out of the house with minimal distress.  When I’m having a good day we can go out and do normal things.  Those times are small victories, they get me through until the next time.  They remind me that I can do it.
  5. Diet – Eating my restrictive diet has made it so I can eat with minimal to no GI distress.  It may be challenging to eat this diet, but I think it’s a small victory, actually a big victory, to be able to eat without GI distress.

 

I wrote a similar post to this one here.

I’m participating in WEGO’s #HAWMC, if you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

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I Give Myself Permission to …

I’ve been participating in a Chronic Pain and Illness photo project.  I participated in the same group last year, you can see those photos on these posts: Chronic Pain/Illness Photo Project, Chronic Pain/Illness Photo Project 2015 Week 2 , and Chronic Pain/Illness Photo Project 2015 Week 3.  This year I’m sharing a few photos here and there, not the whole project.

I’d love to hear your take on this topic.  What do you give yourself permission to???

Today – I give myself permission to Cry.

My x-rays showed more degeneration in my neck. C5-C6
The pain is intense. It just hit me that this is only going to get worse. The pain will always be there.

My father is in the hospital. I can’t go. I can’t ever go.

Today I give myself permission to cry.

(photo taken today, I manipulated it with photoshop, but the tear is real.)

crying

I didn’t expect…

Sometimes you wake up and think it’s going to be a great day, and it isn’t.  Sunday was that kind of day for me.

First thing I cuddled with hubby when I woke and had a silly dog jumping on us all excited and playing, so waking up was loving and fun.  Soon that changed.

I’m not sure what the first thing was but the day became full of petty little arguments and bad feelings.  We would disagree, apologize then something else would happen and we’d disagree again, or we were just very short with each other.  I know I spent most of the day in a huff, or tears.

I tried to talk about what was discussed in my last therapy session….loss….and I got very emotional (read sobbing like a baby).  He did not react like I wanted.  Notice what I said, I felt he was in the wrong because he didn’t behave like I wanted, like I expected him to.  So who’s at fault there?  I think that would be me.  We aren’t hurt by people, we are hurt by our expectations of people.  And I think that is how the rest of day kind of played out.  We didn’t act the way the other person wanted, or expected and that caused bad feelings.

equanimity 6

This can happen with anyone.  If I admit it, that is what happened when I felt abandoned by my friends when I got sick.  I was so hurt, so angry, they didn’t react the way I expected.  This caused all my unhappiness.  That is why I was so hurt.  My friends did not react the way I expected.  What did I expect?  Visits, talks, help, I expected this and more.  People aren’t always going to do what we expect.  It doesn’t make them bad people.  We don’t know the reasons.  Perhaps my illness brought back bad memories, or fear over their own health,   Some people simply don’t know how to be a friend during these times or they don’t really want to be.  We have to accept this.  More than anything we need to understand that the hurt comes from our expectations, not from the people.  Does that make it hurt less?  Sometimes.  When a person I’ve loved for years and years disappeared after I got sick, it hurt.  It hurts more when I know I was there for the person when they needed me.  However, their need ended, there is no end in sight for my needs.  I will always be different than I used to be.  That’s a hard thing for any relationship to endure.  We loose relationships for a number of reasons, we fight, we move, we change jobs….  Not all relationships stay in our lives.  Things change.  We can look at friends we’ve lost since our illness took hold and think, “they showed their true colors”, “they weren’t real friends”… The truth is, they aren’t what we expected them to be and it is that expectation that causes us pain.

I can hear some of you saying, “They abandoned me, shouldn’t I be hurt?”  I’m not saying it won’t hurt, what I’m saying is, we often bring more hurt upon ourselves than is needed.  We have to let it go.  Did the fact that they are no longer in our lives negate all the good times we had?  I hope not.  It changes how we will interact with them in the future.  We’ve changed, they have changed, the relationship changed.  That change may be that it is over.  It may be that the relationship becomes something different from what it was before, we have to decide if it is worth it.  We can have bad feelings about this, but it is our decision whether to hold on to these feelings or let them go.  I try hard to let them go, to find equanimity.  Do I always succeed?  NO.  Sometimes the hurt comes back to the surface, I think that’s a part of grief.  But now I can sit back and think, why is this bothering me so much?  I always come back to the same thing, I want it to be different than it is.  My wants are causing me harm.

Not everyone has to understand what I’m going through, and not everyone has to be there for me.  It is a great feat to be able to accept a person for how they are, even when they let you down.  I’ve decided to let go of the past relationships that didn’t work.  I work on relationships with people who understand my limitations and are willing to work on our relationship the way it is now.  I don’t have many friends from before.  I have made a number of friends on-line since I’ve gotten sick, and lost my hearing.  Due to my limitations, I haven’t been able to make friends outside of the house, maybe that will happen in the future, but I’m okay with that.  I will continue to nurture the relationships I have and focus on these things.

When I got sick most of my friends were starting a family.  I had many friends who were pregnant at the same time the year before I got really sick.  Keeping up with me kind of went by the wayside.  They had a new life, one that would have been new if I were sick or not.  Our friendships would have changed.  Would they have survived if I hadn’t gotten sick?  Probably, at least for longer than they did.  Things changed.  I could no longer nurture the relationships the way I had before, my friends couldn’t find a way to bend to my new limitations.  Is there hard feelings?  I’d lie if I said they aren’t ever there, but for the most part, I’ve found peace with this.  Realizing that my pain comes from me, makes it easier to have equanimity in this situation.

Something else I noticed, when I tried to attend a few gatherings with my friends after I’d been sick for a while, I realized, I had nothing to say.  I used to be a social butterfly, always being able to have conversations with anyone.  After getting sick my world shrank, I rarely go out other than go to the doctors.  My friends still worked, ran around with their kids, and had rich social lives; my life revolves around my health.  That doesn’t give us much to talk about.  I wanted to hear all about their lives, but I had nothing to contribute to the conversations.  I was uncomfortable, and I made others uncomfortable.  Conversations were forced.  We had changed.  The fact that our friendships didn’t survive doesn’t mean either of us are bad people, we grew apart, as many people do.  When you become chronically ill to the point that your life changes so dramatically, it forces all of your relationships to change in a very short period of time.  Suddenly I didn’t have hardly anything in common with my core group of friends.  Normally if relationships change it takes time,  If you lose a relationship it doesn’t normally come in a mass exodus.  That is exactly what happens to many who are chronically ill.  We don’t see this as a natural progression in a relationship, we see this as abandonment.  It hurts much more than when you lose one friend because of something, you are suddenly losing many friends.  When I realized things change no matter what, and I will never know just how they would have changed without me getting sick, it helps me accept these things.

I realize now how much relationships change no matter what, and how much we need to nurture a relationship to keep it alive.  I hope this helps me to be a better friend and find compassion for others and myself when dealing with changing relationships.

 

Does a House Make a Home? uh, oh….guilt followed me home

written but not proofread…..that’ would be a big reason I don’t publish as much as I should….I reread things and think they aren’t good enough…whey would anyone care?….Oh I shouldn’t say that!  ect….ect…  So here you go, what was on my mind….  and another little painting I did on my phone.  

We moved a year ago.

We haven’t sold our house.

Turns out we can’t.  Sounds kind of odd huh?  Technically we could, but it would have to be for much less than we owe on it, and much less than we had offers on it.  We would have to do a “Short Sell”, and ruin our credit.

How does that happen?  Foreclosures in our neighborhood.  Due to the foreclosures our house is appraising for much less than it should.  There are other houses in the neighborhood in the same predicament we are in.  It’s really hard when we had 2 good offers and they couldn’t get loans because of the appraisal.  I do not understand why the amount the foreclosed houses sold for has anything to do with the amount our house should sell for, but the appraisers have this magic formula they go by.  News Flash!  That magic formula, does not work!  We had our hopes up a little bit because one of the other families trying to sell challenged the appraisal and everyone thought they would beat it.  That the numbers would change.  They lost, and everything stayed the same.  That was a sad day.

What do we now?  Rent it.

For a little over a year now we have been paying rent and a mortgage and all the expenses that come with both….like utilities, insurance, and for the house….HOA dues, lawn maintenance…..ect.    I don’t talk a lot about money on here, we have been lucky, Hubby has had good jobs so we haven’t had to worry about paying for the necessities, medical insurance, and my bills…ect.  Right now, things are tight.  We don’t have debtors knocking at our door, but I’m not comfortable with the situation.  It is making me feel even more guilty that I can’t work….that I can’t help.  Hubby had to take a big pay cut for this job.  He didn’t want take a job that didn’t give him very flexible hours so he could come home if I needed or that prohibited him from being  able to take me to doctor appointments.  That was hard.  Another thing, I felt very guilty about.  He was out of work for 16 months, it was hard to find a job with these requirements.  (Well I have to admit, it was hard to find a job at the time anyway.)

This whole situation has been tearing me up inside.  Because of the Avascular Necrosis, and the increased vertigo and migraines, I wasn’t able to travel back and forth to help get the house ready to sell, and Hubby didn’t feel like he could leave me alone to go take care of it, and we sure didn’t have the funds to have professionals come in there and take care of everything. So it took many months to get the house on the market to begin with.  (More Guilt – a pretty useless emotion in situations like this…but I just can’t help it.)

So, I’m stuck in this city, alone.  There is no one for me to call on for help if Hubby goes out of town.  My cousin and his family live fairly close, but it would take them at least 45 minutes to get to my place.  If I fell, or started having a scary vertigo attack…45 minutes or more, could feel like forever.  However, I wouldn’t want to call an ambulance unless it was a true emergency..and yes I would call them for that.  (yes I learned my lesson after I broke my foot)  Often need some help, but not a hospital.  Plus, who would come and get me and take me home?  Hubby would be 3 hours away, and he sure doesn’t need to drive under that much pressure.  Plus, my darling husband would be so worried the entire time he was gone, he wouldn’t get much done, so why go in the first place.  (G-U-I-L-T….don’t fuss at me…I know, I know, gotta get over it, I was better about it, I’ll work on it.)

We had to depend on the kindness of others to help us.  Our amazing neighbor helped us so much.  She ran a yard sale, and got so much stuff out of the house.  Another friend of mine, came and got a huge amount of stuff out of the house.  Yes we downsized so much, many people helped by getting things, and a dear friend came over many weekends and helped sort, and clear things out.  Moving from our house, to a little bitty duplex, was very hard….just physically getting rid of things.  I have become a firm believer that I don’t need much.  Especially since I’m sick.  I got rid of a lot of stuff, and most I don’t miss at all.  I gave away most of my art supplies.  now I miss it.  I do think it will get better when we get settled some place, but right now, we live in a place that is just so…..not a home.  I miss seeing things where they are supposed to be.  I hate seeing things that look out of place because they just don’t have a place.  It looks odd.  Our couches wouldn’t fit in this small place, so we had to get something else, it doesn’t look like us.  Then I had to get a recliner when I had my surgery we were forced into something that really doesn’t match anything because of the short notice, and it’s hard to find one that doesn’t rock.  I really tried to make this place feel like us.  I have paintings and photos all over, we really tried to make it comfortable, but it isn’t.

The duplex is now….falling apart….No…really!  The floor started buckling up, and last week the vent in the floor kind of exploded.  When it started we thought it was water damage.  It started last year, and we told the landlord.  The caulked the window, even though there was no sign of water coming into the window.  It seemed to stop during the winter.  When it got warm it started again, now the floor is bulged out about 6 feet into the living room…in waves.  It’s dangerous.  The landlord is finally paying attention (after I mentioned it was dangerous, and I tripped).  They finally had a professional come out and look at it yesterday, and it looks like it’s termites.  It will take at least a week to fix it and they will be tearing up the whole living room floor and the hall that goes to every other room in the place.  We could not be here, and neither could most of our furniture.  So we kinda need to move.  Before they found out it was termites, Stuart asked if we could wait until the house rents, and the landlord said yes.  Now, I’m not sure he will say that, termites causing damage may trump us needed to wait on money.

What do we do if we have to leave early?  Take money out of retirement, of course.  Hopefully our house will rent fast.  If not, that will not be good.  When we move we will have to pay a new pet deposit, higher rent, a deposit (who knows how different it will be from here)….and someone to help us move….and who knows what else we have to add to this.   Hubby is never going to be able to retire.

When I’ve been back to the house, it has hurt so much.  The last time I lived in a house that was owned was when I was in the 7th grade.  My parents moved that year and we started renting then.  My father still rents the house he lives in.  I always felt odd that we didn’t own the house we lived in.  I always thought, if they changed their mind, we could possibly not have a place to live.  When I was almost out of high school, the heating system went out in one place we lived in for a long time, and the owners decided not to fix it, we had to move.  My father still lives in that house, I never felt like it was home.

After I moved out, I rented.  I never felt like I had a home.  Funny thing though, I’ve lived in two places that I rented that I felt comfortable in, one was a condo that I shared with a girl who is still one of my very best friends.  There was one house Stuart and I rented that I felt could be our home.  Then something happened to the house and again the landlord didn’t want to fix it, and we had to move.  My heart broke.

Finally we bought a house.  It took me a while, but I felt like it was our home.  I had a little herb and wild flower garden in the front, I had a big kitchen I could go crazy in, I had a room that was all my own that I could create art in…we had a place that we could call home.  That meant so much to me.  As I got sick it was harder to go up and down the stairs, but I managed.  We realized that the house was just too big since I couldn’t maneuver the stairs any more, and I couldn’t really create art like I used to, and we weren’t going to add any children to that big house.  We thought about selling and buying a new house, but we were going to wait a bit until the market came back up a bit.  Then….Hubby lost his job and things had to change, fast.

 artrage watercolor of one of the wildflowers from my garden.  by w. holcombe 2015
artrage watercolor of one of the wildflowers from my garden. by w. holcombe 2015

I went to our house recently. Now, my little garden is gone.  It is a patch of dirt, grass, and weeds.  The house looks so odd being empty.  It needed to be cleaned, painted…and some various things done…..I cried, just a little, I knew it would bother Stuart.  He doesn’t understand how I feel.  I don’t understand how I’m feeling.

Home is not a House.

Home is where my love is.

Home is where Stuart, Max, and Kiki are.

as long as we have our necessities taken care of, what else should I be worried about.

I feel lost.

and I feel GUILTY   is it completely stupid…maybe.

But let’s face the facts, people with chronic illnesses often feel guilty about …. a lot of things that they have no control over.

And I’ll talk more about that later.   I’m just way too tired to talk about it now.

At a different time, This post would not have been posted because I would have gotten here and gotten overwhelmed and decided I didn’t want to show everyone how I was feeling and not end a post on a more positive note…..but today…..I’m just writing….

But know….I don’t let this guilt consume me.

One of the BIGGEST things I believe in is COMPASSION.  I bet almost everyone, if not everyone, reading this post also believes in compassion.  (a lot of shaking heads out there…yep, you are agreeing huh?)  Then why is it so hard for us to be compassionate toward ourselves?   Yes, I feel guilty over things I have no control over.  Then I sit my butt down and have a little cry….yep I get all over whelmed with all of this and just cry….then I talk to me, like I would talk to you….and I feel that wonderful feeling toward me….compassion.

And the guilt isn’t so big any more.

Sure sometimes it seems to build back up and crawls back up on my back, but I’m a pretty compassionate woman.  I can reach out and feel compassion for others and me.

There are other ways to deal with the guilt, but I think that compassion is the best place to start.

Heck…I think compassion is just a pretty good place to start…….period.