Human 2 Human

Relationships with other humans have to be one of the most difficult and complex aspects of life. They are for me anyway, and there have been a few issues which have reared their ugly head for me in the past few days.

I know that friendships, family connections and intimate relationships are really hard for me and now days I am inclined to pull back from all of them.

With one failed marriage behind me, along with a string of failed relationships, I am alone and pretty certain that I will remain alone. I believe now that I not supposed to have  someone by my side. I have never believed that there is a soul mate for everyone, nor will everyone find their soul mate. Actually,I suspect my soul-mate might just have been and gone.  And sometimes circumstances just get in the way and block the way for what might have been true love.

On the other hand, it was some years ago now that I also came to the conclusion that close friendships were perhaps something I would be best to avoid. You may call it sad but I call it safe. After being let down by a number of friendships, I made a specific decision that friendships I might have been able to rely on were no longer worth it. Yes, I do have friends but not many and I try hard not to rely too much on them. I am inclined probably too much to withdraw rather than depend.

And then there is family. I have been fortunate to date with my family connections. Maybe they didn’t always understand me or my needs, but they did seem to love me. I think they still love me, but their availability  for me to rely on them is perhaps changing.

I know that my Borderline Personality Disorder (BPD) plays a part in how I relate to other humans. I’d like to say it isn’t part of the story. I’d like to say that I have it ‘under control’. But it is part of me, part of my personality if you like, and no matter how many ways I learn to control or even recover, I know that it will always be there.

An article I read highlighted for me some of the issues that float in and out of importance as issues for me with BPD:

“Most patients named gaining control over emotions, mood swings and negative thoughts, followed by reduction of municipality, self-harm and other destructive behavior and improving self-acceptance and self-confidence. However, improving relationships and improvement of social participation, social competence and job situation has been mentioned as important.”

It speaks of the issues important to patients with BPD in the treatment they need. But I use it as it easily highlights in a paragraph issues I deal with when connecting Human 2 Human.

It’s hard. It’s constantly hard, and with those issues at play perhaps it is easier to understand why I choose so often to withdraw.

This week someone important to me said:

“I don’t care…” [about you]

Ouch! Actually, it was more than “ouch”. It was fuck! Under my breath, of course.

The rest of their words no longer mattered. I had heard that they “don’t care” I didn’t matter anymore. They possibly weren’t even aware of having said it, but it was loud and clear. Maybe this person was someone I could no longer rely on (for any number of reasons). Maybe this was connected to my having BPD. Maybe I was too much. Maybe I had misinterpreted what another person might have taken differently. But then maybe it was simply about their issues not connected to me. It hurt anyway.

Do you see why Human 2 Human is hard?

Another relationship came up on my Human 2 Human radar. I know my mother’s Alzheimer’s Disease is not about me, but how I respond to something that is ever-changing is totally about me. I can’t escape this one.

In a conversation with my mother, I discovered that her memory has gone so much that she appears to know nothing of my life beyond my name and that I am her daughter (I am thankful that she still knows this). She also appears to know nothing of her life when I have been a part of it. Of course, I knew that this was coming some day but that day had arrived and it cut deep. My own mother doesn’t know me. Maybe even I don’t exist for my mother anymore.

My father passed on nearly six years ago, and it seems that while my mother sits in front of me, she is in some way gone too. I have heard the expression of grieving for someone who still lives, and that is even harder than it sounds. I feel like the wind has been blown out of me.

My parents have always been very important to me, although I admit that my mother and I have never been close, never even been friends. The tension between us has gone now. Something I can’t totally explain. But maybe she has gone too.

Perhaps my feeling of loss this week connects to my BPD. I know there will be a connection because there always is. It’s just that I have yet to work it out, to be able to put it into words. Meantime it hurts. Both instances I have described here. I need to hide away and lick my wounds.

I want the luxury of time with my therapist again, but I have no therapist anymore.

All I can do is write. I don’t claim to have any answers. Just questions. I hope that what I choose to write and share with you makes even the tiniest ounce of sense. I suspect it will make more sense with others who travel with a Borderline mind.

Thanks for reading

 

Cate

 

Me And Mum

World Alzheimer’s Day – 21 September

Image credit: courtesy of digitalart at FreeDigitalPhotos.net
Image credit: courtesy of digitalart at FreeDigitalPhotos.net

I hadn’t intended to post again so soon after my last post, but World Alzheimer’s Day today is too good an opportunity to say let’s support the people in our communities who live with Alzheimer’s. People who have the disease, people who support those with the disease, and people who are employed in working with both groups of people.

In writing about Alzheimer’s and my family’s journey it is really important to me that I don’t take advantage of my mother’s plight. She deserves her privacy, something which she has always held tightly to. She doesn’t deserve to be some kind of joke. The struggle she lives with is real, but she is also real. She has feelings. Part of my task in supporting her is to protect those feelings, even though she might not be able to express or even understand them.

This post comes from my own reactions to my mother’s illness. I have tried to write from a perspective of my journey, rather than my mother’s. I hope that in doing so, I have preserved at least some of Mum’s right to privacy.

It’s funny how things happen. I think I would be pretty much the last person my mother expected or even wanted, to be there for her as she traverses her last years – with Alzheimer’s Disease.

“The phrase ‘Love one another’ is so wise. By loving one another, we invest in each other and in ourselves. Perhaps someday, when we need someone to care for us, it may not come from the person we expect, but from the person we least expect… [ someone] whose love for us has assigned them to the honorable, yet dangerous position of caregiver.”

Peggi Speers, The Inspired Caregiver: Finding Joy While Caring for Those You Love

Mum and I never got on. Not when I was a child and not for most of my adult life. It might seem harsh but the reality is that I think Mum and I tolerated each other for the sake of my (now late) father. I always got on great with Dad, but Mum didn’t appear to understand me and I didn’t understand her. I fully expected that when she was old, we would simply go our own ways.

My father died suddenly nearly six years ago. My parents had been temporarily living with me (after they lost their home in the Christchurch 2010/11 earthquakes). I remember the night after Dad’s funeral, I looked across the room at Mum and wondered how we would go from here. Mum hadn’t been diagnosed with Alzheimer’s at that stage, but both Dad and I were clear that she was showing symptoms.

You see, Alzheimer’s runs in my family. My grandmother died of it, as did one of my uncles more recently. Earlier generations possibly bore it’s burden too. I have known it for most of my life, being only about ten when my grandmother was moved into residential care back in the late 1970’s.

Sadly, it’s something we have grown to expect. Mum never talked about this family heritage, but I’m sure she was probably quietly terrified. Frankly, I’m quietly terrified of it myself. But I’ll face that when I get there. My fear is not the focus for today.

It wasn’t long after Dad died that I got a very clear sense that he would want me to ‘be there’ for Mum. People have since told me “don’t be silly, he wouldn’t put that burden on you” but that’s not the way I saw it. To me, it was just one last thing I could do for him. I never stopped to see it as some type of burden. It was just the way it was going to be. Strangely, doing it for Mum never came into it back then. Supporting her would be definitely something I did for my father. Perhaps that’s just the way I needed to see it back then.

Mum was finally diagnosed about two years ago, but symptoms were obvious to those of us who were with her regularly, about six years earlier. And I’ve been learning ever since. I thought I knew the disease, but I really didn’t know anything until I learnt to live with it daily. There are new lessons each day.

Our relationship has changed enormously. It’s still not what I would call a typical close mother-daughter relationship. It never will be. Our relationship centres around her, and what she needs. My needs don’t really come into it. Some days that is really hard. Some days when I’m not well myself I want to scream “what about me?”. But mostly it’s okay. While Mum isn’t able to acknowledge it, I know that she needs me to prioritise her. This is her time now.

Mum needs me. She is living in a rest home, so yes, her basic needs are met. But I see her most days. I am clear that when I am not there, the staff take good care of her, but they are clear that Mum needs (and wants) my presence.

I’m the one that meets all Mum’s other needs. It might be the little things that no one would ever think of, or maybe bigger things like making decisions for her. I’m the one that notices the dirt on her shoes and stops to scrub it off just before taking her out to church. Maybe the dirt doesn’t matter, but it would have mattered to her… and so, now it matters to me.

Mum never appears to have any difficulty knowing who I am. She’s never once hesitated over my name and has no problem telling anyone who will listen that I am her daughter. That said, there are times when it’s quite clear to me that she is talking to me thinking I am my father. Other times I am a mystery third person, who she was eventually able to reveal to me was her sister (she never had a sister!).

I know that Mum has a great deal of difficulty knowing who most other people are. She’s confusing names or having to ask me who someone is. I admit that I try to keep the family names alive in her mind. I talk about my brothers (by name), about her grandchildren (again by name). I talk about my father because I can’t bear to think that she might forget the man she was married to for 53 years.

Maybe I do all of that for my own sake. Maybe I make decisions for her in such a way that will save me from having to see her suffer. I don’t know if it’s that I don’t want her to suffer, or that I can’t bear her suffering. Does that make sense? The two things are different to me.

Alzheimer’s Disease is a terribly cruel illness. I’m not the first person to write that. I see it’s cruelty daily as it robs little pieces of my mother.

I see the pictures in many Alzheimer’s publications of two brains side-by-side. On the left is a ‘normal’ brain and on the right is the smaller ‘Alzheimer’s’ brain. I wonder what my mother’s brain looks like now. How much has it shrunk? And for how long it can go on as it is? I don’t know.

The future of the journey which Mum and I are on is unknown. There is so much that is unknown. Each day, I don’t know what it will contain. Even though I already see my mother struggle so much, I know the struggle will only get worse. It’s just a matter of time. Will it be today? Or some time ahead?

What I do know, is that I have a remarkable opportunity to serve a woman, my mother, in her final days. What an honour. Seriously. I never thought I would say that, but Mum’s willingness to let me be there for her is a gift.

I read that “being a mother is about protecting your children from every conceivable thing that might cause them hurt”.  I’m not a mother myself but I now see my role as protecting my mother from everything that might cause her hurt. Sometimes I can achieve that but sometimes I can’t. At least I can try.

By choosing to look at our journey in these ways makes it bearable for me. I dearly hope that I am somehow making it bearable for Mum.

Thanks for reading

 

Cate

 

Other Posts You Might Be Interested In

Bewildered

Never Say Never

 

I’ve Got Nothing To Complain About

First things first, let me say that I have been missing in action for too long. Somewhat ironically to this post, I have been sick. This is something I have been living with symptoms for about six months now (I know this is relatively nothing).

With this physical illness has been a bad dose of brain fog. If you’ve had it you’ll appreciate why it’s hard to write while dealing with a brain that amongst other issues, I haven’t been able to finish my sentences and I have been mixing up my words, if I can at all bring to the surface of brain the words I want in the first place. I still have little idea as to the ‘why’ of the illness. That question is yet to be answered. I try to take advantage of the good days, and so far, this is one.

I have only been anywhere near homeless once. Nearly 20 years ago. I use the word ‘homeless’ with what has to be a stretch of the imagination, but I use it for a purpose. At the time, I was mentally ill. Actually, that mental illness was far out of control and I was usually (at the time) resident in a psychiatric hospital. Actually, I spent most of 1997 as an inpatient, sometimes as a voluntary patient, and others as an involuntary patient. Neither was pleasant.

One day I was given the opportunity to go on a ‘van outing’. Wow! I don’t remember my status as a patient at the time, but I know that because I had been self-harming, I was initially told I couldn’t go, until the last-minute. While out on the van trip (to get ice-cream) I chose to run away, with another patient. There was no plan to run, on part anyway, just making the most of the opportunity. I am still embarrassed by my actions, given circumstances I took advantage of. It was plainly wrong, in so many ways. There was no way that staff could stop us because of the staff member’s incapacity. That’s why we did it.

I split up from my co-conspirator fairly quickly. She was largely interested in getting drugs, not something I was after. I spent the rest of the day walking the streets of Wellington, New Zealand trying to avoid the possibility of seeing anyone I knew, or being caught by Police. I had soon self-harmed and needed medical treatment, but I kept walking anyway. I didn’t want treatment.

For a ‘few’ hours I had no home, that was accessible to me anyway. Eventually, I was picked up by Police, taken to the local Emergency Department before being escorted back to the psychiatric hospital.

Why have I told you this? It was a long time ago but it was the closest I ever came to being homeless. I recognise that I wasn’t homeless. I just couldn’t go home. And I didn’t want to either.

Today I read an article about having a chronic illness while being homeless (in the United States). It focused on chronic physical illness, which I am now battling more than I was then battling mental illness. The article opened my eyes to something I had not stopped to consider. Living in my nice warm home with chronic illness, I have nothing to complain about when compared to the hardship faced by homeless people living with chronic illness.

Have a read.

The Impossibility of Managing a Chronic Disease While Homeless by Maralyssa Bann 

http://www.theatlantic.com/health/archive/2016/03/homeless-patients/475830/

“Living on the street, even something as simple as finding a place to store medicine can be an insurmountable challenge.”

It made me think about my attitude to my own illness. I have got nothing to complain about. I hope you are challenged in reading the article too.

Thanks for reading

 

Cate

Never Say Never

I did say ‘never’. More than once. Actually I said it repeatedly for about 20 years. That’s a long time to say ‘never’ but I was sure of myself. I was sure that I never wanted to do this again. I’d been, got burnt several times, and wasn’t going to go there ever again.

About six months ago I had my first inkling that perhaps I had said ‘never’ with a little too much certainty. But I had never pictured myself in this situation, ever. While I was still saying ‘never’, I was starting to realise that I might have to change my mind sometime in the future.

I can tell you that I hate that! Having been adamant for so long, having been sure that this would never happen, and now because of a number of decisions I had made over recent years, I knew that I should never have said ‘never’. Never say never, Cate!

I have shared in past posts that my mother has Alzheimer’s Disease. It’s a cruel disease. Everyone says that but I had little idea just how cruel it was. I had seen my grandmother’s journey through Alzheimer’s. An uncle’s journey more recently. And one thing that’s sure is that I’m nowhere near the end of this Alzheimer’s journey yet. I know now that contrary to past thinking, it’s a much worse experience for my mother than it will ever be for me.

I remember being told “at least they don’t know what is happening to them”. That was a somewhat comforting thought. Just yesterday someone told me “they’re really already dead” (ouch!). But research has now found that patients do know. It’s just they don’t know what they can do about it. It’s a good reminder to me that no matter how hard this is for me, it is much worse for my mother. That’s enough for me to never say ‘never’.

For all of her life, my mother has gone to church. It has been central to her life as a child and as an adult. She was married to a minister. Now it continues to be a key aspect of her life, although she is more limited in the extent of her church activities. Apart from perhaps when she has been in hospital (rarely) I can’t think of a time when she didn’t go to church on Sunday.

When mum had to give up her driver’s licence and so couldn’t get herself to church, we set up a system where another brother (who went to the same church) would pick her up and take her to church. I would be waiting outside church at the end of the service to take mum home. Many times I have been invited to go to church with her, but I was saying ‘never’… quite firmly. I had absolutely no intention of going. But the system we had set up worked.

For a big chunk of my life, I had gone to church. I had grown up in a minister’s family so church was central to our family activities. As an adult, I had continued to go to church.

Several things happened in my teens and twenties. They dulled my enthusiasm, although I never said anything and I kept up my participation. When I was first diagnosed with a mental illness, in my late 20’s, a number of statements made to me by a few unwise people, left me concluding that church was no longer the place for me. I felt judged, and I felt uncared for. To the extreme perhaps, people who had hurt and abused me were somewhat more important to some church people than I was. My needs for safety and protection were seemingly unimportant. My experience was that church was not the compassionate and accepting place they said it was.

And so I stopped going to church… about 20 years ago.

Until now.

My thinking has driven me further away from the church. But just sometimes, it’s necessary to put that aside. My mother now needs someone to be with her when she goes to church, otherwise she probably wouldn’t be able to go for much longer.

I made a choice. I would go to church with her until the point where she can no longer go (with me).

Aside from my own beliefs and thoughts, I’m not ready to see mum unable to go to church. It is very important to her, even with her disease. For some reason that I don’t fully understand yet, I’m prepared to help her keep it in her life.

Ok, so I have only been once so far. There is little that has changed in 20 years, except some of the music. It wasn’t somewhere I felt comfortable, but my comfort was not what this exercise was about. I don’t call myself a Christian, and suspect that will continue. I didn’t agree with everything that was said. It is a middle-class church and I wondered where the inclusion of others was.

But I will be there, with her, again this Sunday. And the Sunday after. And for as long as Mum can make it.

This is about being there for my mother. Making sure that something so important to her remains in her life, and setting aside my own thinking, I hope, for her sake,  that we can keep doing this. You see, when we can’t keep going, a very large chunk of mum’s life will have been taken away by Alzheimer’s. And that will be tragic.

It’s going to be a hard road for me. But I am willing to do it, not because I love her but simply because I hate to see this disease swallow up someone’s life before it has to.

Thanks for reading

 

Cate

“looking at my reflection, in the window opposite, hollow and translucent, I see a woman disappearing. It would help if I looked like that in real life – if the more the disease advanced, the more ‘see-through’ I became until, eventually, I would be just a wisp of a ghost. How much more convenient it would be, how much easier for everyone, including me, if my body just melted away along with my mind. Then we’d all know where we were, literally and metaphysically.”

― Rowan Coleman, The Day We Met

Hope… I’m Back Writing It

It was six months back, my Last Post.

At that time I was sure that this blog had done its time.  I had my reasons, and they were enough for me to sign off something that I had loved for three years. But I missed it.  I missed you, and in time a certainty grew inside me, that just maybe this blog hadn’t done its time. Now I know I want to be here again, and so I’m back.

You’ll see that there are a few cosmetic changes.  It was time for a facelift.  What remains are the daisies, and that’s because daisies have always been a symbol of what I want to be writing about.

It’s not just hope.  It’s about what daisies stand for. Look at the image above and think about daisies for a moment. The daisies grow almost anywhere. In the grass, they get trodden on, and perhaps worse still get decapitated in a lawnmower. Yet they keep growing back. They are completely resilient and keep growing almost no matter what.

What better symbol for a blog about getting through some really difficult times (both mental and physical illness) with a sometimes underrated thing called hope?

Hope is explained in many different ways.  I don’t think it is possible to put just a few words into one definition. Rather I believe that we each need to find our own definition. Something that means something to me (or to you).

Perhaps most commonly used as a definition is the phrase ‘Hold On Pain Ends‘. If that describes your situation and works for you, then that is something you can use.  But it doesn’t work for me for one reason: the pain doesn’t necessarily end. I have come to a point where I have realised that I have to find hope in spite of pain. I’m working on that.

A little over three years ago, I wrote this about my understanding of hope:

“It’s a specific belief that the future looks better and I can make a difference in my own recovery.”

Hope Is A Four Letter Word I Use Now

Maybe it doesn’t work for you.  Certainly other writers will have penned it better.  That doesn’t matter though, because what matters is that it works for me.

“Better than this”

It’s simplistic, but it’s manageable regardless what type of pain I’m in, and what degree of pain is my current reality. I know that ‘better than this‘ can be and so with that in mind hopefully I keep on going.

So how do you define hope? What works for you?

After six months of very little writing and almost no reading, it’s going to take me a while to get going again.  My reading is completely affected by my concentration levels.  Brain fog, courtesy of fibromyalgia, is to blame for that. As I am able, I look forward to getting back to your blogs. Please bear with me.

Cate

PS: You may notice that I’ve changed my gravatar (see to the right of the screen).  My old one didn’t work for me after three years.  This new one is formed from a photograph of street art built around construction sites in Christchurch, where I live.  I love it, and I believe that ballerinas must from hope in pain as much as anyone.

Further reading

A New Look at Daisy (Bellis Perennis) PositiveHealth.com

To Cope

cope

Pronunciation: /kəʊp

 VERB
[NO OBJECT]

1(Of a person) deal effectively with something difficult:
 

his ability to cope with stress; it all got too much for me and I couldn’t cope

(Source: Oxford English Dictionary)

And now that the English lesson is over for the day, let us get on to more meaningful issues around this word.  Like how do we cope?  What coping mechanisms do we use in order to get through life?  Are those means of coping, healthy or otherwise?

But here’s the catch… I don’t want you to tell me how you cope.  I have enough dealing with my own means of coping.  Tell yourself, instead.  Tell yourself what coping mechanisms you use to manage physical or mental difficulties.  Maybe you have both and so you need to tell yourself about both.  And check with yourself, are they healthy or unhealthy?  And perhaps more to the point, does it matter?  Be honest with yourself.  Know what it is that keeps you going.

And now I will get on with my post. I have had a means of coping with a particular aspect of my life, for a very long time.  Actually I have used this means for as long as I can remember.  I’m talking pre-school.  I can’t remember when I didn’t do this as a way to cope.  This is a very longstanding way to cope.  And it worked.  First as a child, and then as an adult.

There are only two occasions in my life where this coping mechanism of mine was denied (for want of a better word).  Actually they were similar but different.  One involved me sharing some small detail of my means to cope with another, and that other using it to abuse me.  Obviously that didn’t work.  The other refused to accept me if ‘me‘ included that means of coping

Both times I had to weigh up what was more important, my coping mechanism or the people involved.  Both times it required a potentially life-changing decision.  These people insisted I remove the coping mechanism from my life in order to have some type of connection with them.  Actually I chose my means to cope with my life, and it hurt like hell.  But… I never had a doubt that I had done the right thing.

For a third time, this week my means to coping was challenged.  Actually it was more than challenged because of the environment involved.  This time my means of coping was totally chucked out and I was told I ‘couldn’t use it anymore’.  Gone.

If I could go into details, then I could go some way to explain just how devastating that has been.  I can’t.  But maybe it doesn’t matter so much because perhaps my feelings are what are important.  I’m not sure if I can adequately put those in a few words but I will try.

Hurt, denied, shut out.  I was fighting for air to breathe.  Literally my means of life was being denied.  It hurt to the extent that it felt my skin was being peeled off.

I know that it is difficult to comprehend, but go back to your own means of coping.  Maybe one you used from childhood, or something you had to do to keep yourself alive as an adult?  One that actually meant a difference between life and death.  Now have that taken away from you, by someone important in your life.  Maybe it’s happened to you already.  Can you see now a little of how I might feel?

To be honest, I spent most of the week in denial.  There was too much to do, people to face, it couldn’t work any other way.  It simply was the only way to handle it, without totally losing it.  But then I had to go back to the person who did it.  That’s where it felt like my skin was being peeled off all over again. Fuck!

And I felt myself crumbling, not sure if myself even existed anymore…

“You think you’re lost but you’re not lost on your own. You’re not alone. I will stand by you, I will help you through when you’ve done all you can do.
If you can’t cope, I will dry your eyes
I will fight your fight, I will hold you tight and I won’t let go”

— Rascal Flatts

Good Intentions

I had good intentions.  You know when an event is coming up and for once you’re organised?  Each day leading to the event is planned?  That’s how I was with Christmas this year.  I knew what I had to do, I had most of what I had to do done.

But then I got a phone call on Monday morning.

It changed all that.  While Christmas still happened (like such events have a habit of doing regardless of what we have happening in our lives), Christmas changed.  The days before, and the days afterward changed.  I think I’ll remember this Christmas.

I had already come to the conclusion that Christmas this year would be about family.  For once, I was actually looking forward to the day.  I don’t usually.  I’m one of those people who would rather ignore the day.  Usually I grudgingly do the things expected of me, but mostly detest this celebration… for a number of reasons.  This year was going to be different.  Somehow my mindset had changed just a little.

Early Monday morning I got a phone call to say my almost-87-year-old mother was not well.  I wasn’t yet dressed but threw on the nearest clean clothes I could find, and drove over to Mum’s flat in a nearby retirement village.  And there began a search to get help for her.

To be honest, I wasn’t quite sure what to do to begin with.  We are all fairly new to all this.  Thankfully I was able to get some quick advice and then acted on it.  Many phone calls later, Mum had an emergency appointment with her doctor in a few hours.  That followed with more appointments.

I can tell you that a few days before Christmas is not the time to seek help from health professionals.  Everyone wants to see them, but luckily those involved made room for mum.  Unfortunately the problem wasn’t solved and the conclusion was eventually that family would have to provide the care Mum needed.  That basically meant me!

What followed was three nights on Mum’s couch.  The most uncomfortable sofa bed I have ever had the misfortune to attempt to sleep on.  I have now spent seven days with Mum, although we agreed that she didn’t need me so much at night and that because my back was now extremely sore, I have been home at night.  I only live five minutes away and I can easily jump (if my body lets me) in the car and go back (as I have had to do).

Nearly a week on, Mum is doing better although is not herself.  I wonder whether I will ever see that ‘herself‘ again.  I don’t know.  That’s the nature of the illness.

I will continue to spend days with my mother, and then on Wednesday she will move to a rest home, providing residential care for the elderly.  This is something that was already planned.  This past week we tried unsuccessfully to move Mum early.  It didn’t happen because… well, I won’t get into that here.

That is the short story.  The purpose of sharing it here, as well as to simply write out for myself what happened, is that it very much fit with what I had already been thinking of for Christmas, and what I had intended to post about on Monday.  Obviously it didn’t happen.

Image credit: Permission obtained from Penny Redshaw http//: motivating giraffe.wordpress.com

I am sharing this image firstly because I love Penny’s blog.  Somehow, without my involvement (obviously… it is not my blog) she illustrates what I am thinking.  Amazing!  I also love images of giraffes.  I’m sure I would love giraffes themselves but there are not many in this country.

For some weeks I have been thinking about what is important for me at Christmas.  My thoughts came from a disappointment that I simply wasn’t going to be able to give my nieces and nephews gifts this Christmas.  I had no money as a result of not only a very small income but also because of some recent very large and unexpected bills.

I started (a few weeks back) to feel pretty down about this, not to mention embarrassed.  I had to shift my thinking somehow, and I started to do that with Penny’s statement in this image.  Remember what is important.

What is important is that I am alive and can be with at least some of my family.  The niece and two nephews who I would be with were really what mattered.  But that doesn’t exclude the other family members I would also be with.

When my mother got sick this week, it gave me a new appreciation of the fact that I still have her, and that regardless of her illness she would (and was) with us on Christmas Day. Who knows how long she will be with us? I had to take her presence on Thursday as another thing that mattered.

It’s been a long, hard week.  And it’s not over yet.  My fibromyalgia is screaming, as are side effects of a new medication which made it almost, but not quite, impossible to get down on the floor and do jigsaws with four-year-old niece L.  Getting up afterwards was even harder.  But it was fun, and that was what was important.

Hey, life goes on and I have a new appreciation of what’s important for me.  It didn’t matter that I hadn’t given gifts.  I suspect the teenagers might have objected a little, but they didn’t to me.  We just had fun together, with their Grandma quietly looking on.  I wonder what she was thinking.  I know I’ll never know

But that’s what’s important to me right now.

 “My dear young cousin, if there’s one thing I’ve learned over the eons, it’s that you can’t give up on your family, no matter how tempting they make it.”

― Rick Riordan

Facing The Mundane Realities Of Chronic Illness

There are some things which are obvious about chronic illness, although admittedly when it is an invisible illness even those obvious things are hard to see and be aware of.  I don’t mean for this post to be a ‘moaning Maggie‘ post, so forgive me if you think I am heading there.  But this is on my mind.  With most posts I publish it is my desire that people read them (ok, I’m stating the obvious), but this time I admit that the shame involved in posting leaves me with mixed feelings.  Yes, I want you to read but yes, I am ashamed of what I say.

I read awhile ago that Fibromyalgia doesn’t kill you but you just keep getting sicker.  I don’t know if that is true, or another internet rumour, but this past year certainly seems to have been worse than before.  I feel a bit like fibro has become just one long line of flare symptoms, with little or no break.  My head seems in a permanent fog.

On Tuesday I have a small army of people coming through my house to do yet another assessment of earthquake damage left from 2010/11.  Yes, you’re quite right.  That was a long time ago but recovery takes… forever it seems.

They always promise ‘minimal disruption‘ but around ten people going over (and under and through) the house with a fine tooth comb is not ‘minimal disruption‘.  That’s ok though as I am just happy that someone is doing something.  Maybe one day there will be a decision on just what to do with my poor home.

From many of these assessments before, I am fully aware that they will see everything… including the fact that my house is not just untidy, but also unclean.  And yes, it’s got to that stage where it’s plainly obvious.  I am ashamed at the state of the place, but it has become like that simply because my fibro has been bad enough to prevent me from doing housework.  I also know , like a promised added extra, that when I actually get to cleaning it is likely to land me in bed for a week, simply from the effort involved.

So why am I telling you about my shameful dirty house?  Because if you looked at me you wouldn’t see a reason why I couldn’t have kept on top of it.  I look healthy.  I look able.  I look like there is nothing wrong with me.  Yet I can’t keep up with what is simply a small two bedroom house with only one person to mess it up.

I don’t have a lot of people come to my house usually.  I admit to being somewhat of a hermit.  I have no idea of what judgements those who have been here lately will have made of me.  There is always silence.  And uncomfortable silence where you wish to god that they would just say something.

Right now I am very aware of the judgements that this army of people might make on Tuesday.  Yet there is very little I can do about it.  I can hardly stop them at the door and say “BTW excuse the mess, I have fibro“.  I really don’t think they will care for excuses.  You see, I look fine and so the judgement will be made that I am fine, but lazy.

That old adage “don’t judge a book by its cover” applies in so many ways.  If you walk into someone’s house and notice it is unclean and untidy, stop to think that there may be a reason.  Most of us don’t choose to live in such a state, but some of us find ourselves having to.

You see, apart from when ten people are about to come through my house, I can kind of overlook the state of my home.  I don’t like it, and I would love for it not to be the reality, but my priorities are largely my health and my mother’s welfare.  After those, if I have no wellness and energy to deal with housework, it simply has to be as it is.  I’m learning to live with it, even though I will probably never like it.

It’s not just chronic physical illness that can prevent us from staying on top of such mundane tasks.  Mental illness can too.  Certainly for some people with mental illness, they can find it therapeutic to do those things but for others, it is simply too much.  For some, their illness can be affected by the state of their home, but for others illness almost keeps us from seeing the obvious.  Actually I have no difficulty in seeing the obvious today.

We need to find ways of being kind to ourselves.  I could choose to beat myself up about what I can’t do right now.  It would make sense as more than likely I am going to be judged by it shortly. But this time I’m trying not to get stressed.  If cleaning happens, it happens… and I’ll probably spend the rest of the week in bed.  If I can’t do it, so be it.  It won’t be the end of my world.

And now comes the big question… do I publish or not?  This is, afterall a post about housework and my unclean house.  Can I swallow the pill of shame in order to say out loud that this happens.  It’s real.  Actually I bet it’s real for many more than just me.  Maybe it’s not the housework.  Maybe it’s some other mundane reality of chronic illness.  We can talk about the illness, but there’s more to it than just symptoms.  There are all the realities of just keeping life going.  The best we can do for each other is to be real about them.

“When you argue with reality, you lose, but only 100% of the time.”

― Byron Katie

Who’s Going To Look After Me?

Who’s going to look after me?  Well, I guess that’s Me!

(If you’ve got this far then you’ve got the answer now, so if you choose to skip the rest of the post below, I’ll understand😉 )

I live on my own and have done so for a while now.  Actually to many people’s surprise, I like it that way.  And I’ve learnt how to look after me, simply because there is no one else who is going to do it.  That means that I know how to do many things that others assume need two people.  Chronic illness (and low income) mean I know how to fend for myself with whatever is in the house, and whatever is missing.  Sure, sometimes it would be nice to have someone look after me, but I don’t need it.  And that is a huge advantage in my life as it is right now.

Today was one of those days where I woke up immediately knowing that fibromyalgia was here for a visit.  With an anthem of Beethoven’s Ode to Joy ringing in my ears (thanks to the still ever-present music hallucinations) I can’t say I was overly enthused about the day.  Played once is lovely but when it’s gone on repetitively for about 30 times, any music turns to beyond ugly.

Add to that, a feeling around my head that brain fog was back (oh yay!) and my body feeling the presence of a hundred rocks and shards of broken glass.  Nothing was looking good, although I don’t want to misrepresent things.  There are plenty of days which are worse, I just knew that today I needed to rest.  Otherwise bad would probably become worse.

As usual there were things that weren’t going to happen.  Perhaps most important (to J anyway) was that I wasn’t going to get my nephew’s birthday present wrapped and posted in time for his birthday on Saturday.  Sorry J.

And the usual support I give to another human being most days, was also not going to happen.  She’s used to this.  She doesn’t necessarily understand the existence of chronic illness in my life but she knows the consequences for her.  And that’s what matters in her world.

I rang and made my apologies.  Right now is the time I most need to hold onto looking after me.  It would be very easy to give in, regardless of how bad I feel, when I hear on the other end of the phone:

What About Me?

followed shortly after by

Who’s Going To Look After Me?

Those are really hard questions to answer, especially when you’ve had almost a lifetime of wonky learning that I have had to re-learn for myself with many hours of therapy and self-talk.  I should stick in right here that actually there wasn’t necessarily anything wrong with the teaching I got.  It simply wasn’t detailed enough.  You see I learnt half the message, and more often than not, failed to get the important part.  While I don’t have children and so I don’t know a whole heap about teaching them, it strikes me that many times something I needed to learn as a child was simplified so much that I entirely missed the point.

I’m not blaming anyone for this. It just happened.  I missed the point so many times, but I know many children taught the same lesson, got it.  Maybe I just learn differently.  Maybe I just needed more specifics.  Maybe… anything.  It’s simply that what I got in the way of teaching didn’t work for me.

One of the things I learnt, rightly or wrongly, was to put other people ahead of myself.  My lessons with Christian based and there is plenty in the Bible that I could misinterpret to believe (as a child) that everyone else was more important than me.  This isn’t a biblical post so I’m not going to get into what the lesson really was meant to be.  What matters is what I learnt.  Anyone on this planet was more important than me and I had to put their needs first.  It’s just a shame that no one realised how wrong I had got this.

While I’ve now learnt that I matter and that I need to take care of myself, the damage was done and in spite of many hours therapy, and many hours talking to the person who taught me as a child, if I’m not careful I still find my thoughts going back to putting everybody else first.  It’s nothing to do with selflessness either.  Just me not realising that my needs mattered.  Actually the line I learnt (from a Sunday School song) was “Jesus first, Yourself last and Others in between”.  It spelt J-O-Y and I was under the impression that I would be happy if I put myself last.  It is still very firmly stuck in my mind, and I have to consciously change my thinking.  It’s really no wonder that I ended up deeply depressed years later.

So today when the question “Who’s going to look after me?” came through the telephone I had to consciously stop myself from leaping to look after her.  I had to put my needs first, and I know that if I hadn’t it would be longer before I could be back to her.

Maybe it seems so simple, and I know there have been a few therapists in my time who didn’t seem to understand how much I had this stuck in my mind.  I guess when I learnt this as a child, even though I got it wrong, I held onto it.  Tight.  So much so that many years later, it is a constant battle in my head to change that almost automatic thinking.

Today I’m looking after me.  Tomorrow I will be too.  And for the third person in this post?  I left her with a few ideas of how she could care for herself today.

“If I had my child to raise all over again,
I’d finger paint more, and point the finger less.
I’d do less correcting, and more connecting.
I’d take my eyes off my watch, and watch with my eyes.
I would care to know less, and know to care more.
I’d take more hikes and fly more kites.
I’d stop playing serious, and seriously play.
I’d run through more fields, and gaze at more stars.
I’d do more hugging, and less tugging.
I would be firm less often, and affirm much more.
I’d build self esteem first, and the house later.
I’d teach less about the love of power, and more about the power of love.” 

— Diane Loomans

 

Going Around In Circles

For a while now this song has been going around in my head.  My head has been going around in circles.  It’s getting tiring.  I just want it to stop.  I just want some clarity about what do I do now.

 

“Oh, Delilah Blue, what do we do now? What do we do now?
Magnolia memories fill my eyes and the sweet bird of youth done flown away
But don’t let anybody ever say
This old dancer never had her day
’cause this old dancer always knew we’d make it through, Delilah Blue.”

There is a growing amount of stress in my mind.  It’s caused by a number of things.  Health, wealth (or absence of it), family, oh and let’s not forget life in general.  Admittedly the first three are perhaps giving the biggest stress, and then because the stress grows inside my head, it eventually becomes a case of everything.  Everything has my head turning in circles, and it don’t feel too good.  It’s time to take some action on the things that I still have a little control over.  Maybe that will make the uncontrollable things seem less daunting.

Some of you might know that I started another blog recently.  If you didn’t know, it’s just that I hadn’t got to you yet.  For those that did know, the blog no longer exists.  I quickly realised that it wasn’t going to serve the needs I had.  Everything is now gone, so if you missed my most recent posts there, then you’ve missed.  Apologies if you think I messed you around.  That wasn’t my intention.  It’s just sometimes it’s easy to see that “this ain’t going to work“.  It didn’t.

For those of you who didn’t know I started a new blog, life goes on as it was.  In time, I may (or then again, may not) publish the material from there on here.  Meanwhile I’m still answering my question “what do we do now?“.

Back to the real purpose of this post though.  There’s one thing I really hate and that’s not being in control.  I spent years with an eating disorder all about that issue.  I couldn’t control aspects of my life so I chose to control how little food I put in my mouth and how many hours exercise I did each day.  So I know control has the potential to bite me (excuse the pun).  Not just on food though, I know it has the potential to destroy me… if I let it.

I seem to have little control over my physical health right now.  I have got into a pattern of going from (fibromyalgia) flare to flare, with nothing in between.  Where are the good days?  They don’t happen and still having not resolved the issue of pain medication, it isn’t fun and it’s doing my head in.

Wealth?  Well most of us have that issue don’t we?  Especially if having to rely on government welfare.  Especially having to face medical costs.  I guess I find winter even harder for the wealth issue, thanks for power bills.  A house that constantly leaks warm air (thanks for earthquake damage) is not helping.  I seriously considered this week shifting myself entirely into just one room of the house.  Impractical as it was, I was reminded of a children’s story I loved when growing up.  The main character broke her back and was shifted, bed and all, into the family lounge so that she could be part of the family.  Considering this for myself left me unsure whether I wanted to laugh or cry.  Anyway, I didn’t do it.

And as for family?  Sometimes, and more often than not right now, I feel exceptionally helpless.  I can watch but can do so little.  This week I have felt incredibly alone with this burden.  Loving someone but not being able to make it better, hurts like hell. And it seems like when I’m not there because of my own health, their health suffers too.   It’s a lonely road, and I know there are few answers that I can actually make happen.  I just have to be there, and often that’s harder than anything.  I guess my family had to watch me fade from their eyes for what was a very long time (thankfully I eventually came back).  I think what I feel now is a little like that.  Watching someone fade.

It hurts.

“Are the days of winter sunshine just as sad for you, too? When it is misty, in the evenings, and I am out walking by myself, it seems to me that the rain is falling through my heart and causing it to crumble into ruins.”

— Gustave Flaubert