For Her Sake Or For Mine?

World Alzheimer’s Day – 2017

I haven’t been blogging much lately. It’s not because I haven’t wanted to. I have. And generally, I still have a lot to say.

But my brain isn’t functioning too well, and it gets in the way of getting the thoughts (and feelings) from my brain onto my screen. I start plenty of posts but they simply don’t end up saying what I want. And so I don’t even start to write. It’s easier that way because as a writer, there isn’t much worse than not being able to get the words out. Don’t mistake this as writer’s block. It’s not.

The problem I have is called brain fog (aka cognitive dysfunction) and I currently have two chronic medical conditions which make this a daily reality. Then there are several medications I take which contribute to the severity of my brain fog. And let me just say for those who have never had it, that the term ‘brain fog’ drastically underestimates the issue.

It was only a few days ago that I tempted the derision of another by raising the issue with my doctor (again). My brain fog has been so bad lately that I feared some type of permanent brain injury had somehow taken place, or perhaps even early-onset Alzheimer’s Disease. (There’s enough Alzheimer’s Disease in my family to know that it could well be a reality for me some time ahead).

My doctor told me to take a multivitamin. There is a lot I could say about her response, but I won’t because well, this post isn’t about her.

Regular (yes, I realise there has to be something to read to become regular) readers will remember that my mother lives with Alzheimer’s Disease. You can read previous posts that address this aspect of her, and my life here and here, as a starter. What’s important to know is that World Alzheimer’s Day is important to me. It’s right up there as far as awareness days go. Not just because of my mother’s current fight, but also the past fights of an uncle and my maternal grandmother, and of course, that one day this may well be my fight too.

Mum has been living in a secure facility directed at dementia care for nine months now. In that time, I have witnessed her fight become more intense. I have watched as she now struggles to recognise anyone but me. Sometimes she knows I am her daughter, but other times she is adamant I’m not her daughter, and that instead, I am a long-standing friend. Then other times I’m not altogether sure just who she thinks I am, except it is clear that I am of meaning to her. Only a couple of times have I got the sense that she had no idea who I am. Yes, all of that leaves me sad. I am grieving for someone who stands in front of me.

All of that leaves me thinking about why I do what I do?

Why do I spend time with Mum most days, often while I am in a great deal of pain, and often when brain fog is leaving me struggling to even speak with her (and/or the staff)?. Why is it important to me to be there for her, regardless of what physical, emotional or mental toll that has on me? Or simply when I could be doing something else?

I am the only person in her life that she actually recognises now. I find this terribly hard. Each time I have the realisation that she doesn’t recognise someone, it hurts. Each time she tells me she doesn’t remember being married, or the man she was married to, it hurts. I find that one particularly painful, simply because she was married for 53 years (to my Dad) and her brain has shut out all those memories.

But I have a unique opportunity to attempt to keep those memories alive, whether that maybe in telling her about aspects of her life, or simply keeping the memories alive in me. I can do that for her. And I can be her voice in a world she finds increasingly bewildering.

Imagine if you knew only one person. That person would be so important to us, and we would probably rely on them a great deal. I would hate for my mother to not have that one person, and so I do what I do for her sake. For her sake, to have a person in her life.

Realistically though, I know there will come a time when she no longer recognises me, but I am determined to be there anyway. Determined to be that person for her, even if/when she isn’t aware.

The truth is though, that I do what I do for me too. A year or so ago I would have told you that I am there for Mum for the sake of my late father. Doing what I thought he would want. But I know now that I also do it for my sake.

I have never had a good relationship with Mum. Actually, we now have the best relationship we’ve ever had. This is my opportunity to have a relationship with my mother. It might not be the sort you would hope for, but we have a connection. It is unique, it is largely one-sided, but it is something I have never had.

I’m not making up for lost time, but rather simply having what I am fortunate enough to be given at this time. Perhaps neither of us were ready for a relationship before, but now we both benefit. It is for her sake, and for mine.

And with that note, I will take my multivitamin (because I’m just a little scared not to).

Thanks for reading

 

Cate

Vicious Circle

It goes round and round. Each time the circle escalates and the effects grow more.

Stress causes Pain cause Stress

Oh, and add in depression.

It looks like this:

Image credit: www.orthop.washington.edu
Image credit: http://www.orthop.washington.edu

I have one month to find somewhere else to live.  At that time, the repairs to earthquake damage to my home will finally begin. Don’t get me wrong. Because I’ve been waiting nearly five years, I am happy that they are finally about to start. Very happy. The repairs will take approximately six months.

The biggest stress right now is that I hope my insurance company are going to help with the costs of shifting and somewhere to live. But they won’t tell me how they will help (I mean specifics beyond what the policy document says) until the insurance company doing the repairs provide a specific completion date. I’m waiting. And I understand because they can’t finalise exactly how long the work will take until they lift up the floor and see just how bad things are down there. Meantime though, what my insurance company want is a best estimate.

The reason that’s the biggest stress for me right now is because I can’t find somewhere to live until I know what assistance I’m getting. You see I expect to have to pay three to four times what I am currently paying in rent. Yes, three to four times! And that is more than I get in income each week. I REALLY need my insurance.

My current rent is low, thanks to my family who own the property. But equally rents in Christchurch have skyrocketed since the quakes because of demand for housing, and a little bit (that’s generous!) because many landlords have been mean and taken advantage of the situation.  The Government keeps reporting that rents are coming down again, but not when you look at what is advertised. Rent is still really steep. The demand for rentals is not as great as it was maybe two to three years ago. Repairs are getting completed and homeowners are moving home. But it’s still not going to be easy.

So there is plenty of stress in my life, and the vicious circle kicks in because, for me, stress is the biggest trigger to fibromyalgia symptoms. Stress equals pain. And pain equals stress because pain means I can get less done. And when pain goes on, increasing stress, then I start to get depressed. Or more accurately, more depressed. Oh, and add in fatigue… and an unhealthy amount of brain function. In other words I can hardly function at all and I’m hardly likely to come over as a great budding tenant to an agent or landlord.

This week I have been in a lot of pain all week (it’s Thursday here). I have rated my pain  as “being able to leave the house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping and using the computer“.

I have limited activity to visiting my mother (she has Alzheimer’s and doesn’t really understand why I can’t visit her). I don’t know for sure but I suspect an Alzheimer’s patient works on the way many people choose to view Invisible illness. S/he can’t see it so it doesn’t exist. Maybe that’s a bit harsh, but I think it’s something like that. Certainly there is little understanding. From Mum’s perspective, I get it. Some others, I’m not so charitable.

Of course, Mum’s illness simply adds to my stress. Today I decided to say “no” and not visit her. I wondered whether by keeping up the daily visits, whether I was exacerbating my own illness.

There are actually more and more facets to my vicious circle. What I really need is that completion date and then the details of how my insurance company will help me. Right now insurance companies are not my favourite people…

Instead of focusing on the negative, the positive is that by mapping out that vicious circle I actually remind myself what is going on. Better yet, maybe I can stop it all winding up just through awareness. I know for myself that if I can limit the flow of stress then I can limit the onset of pain and depression. And that will make for a happier Cate. Anything for that!

PS. By the way, do you remember Lucy? Lucy is my music hallucinations, and she continues. This week she is louder and more invasive than ever. I’m starting to think that Lucy is also affected by stress.

 

Flared

Today is day two of my latest fibromyalgia flare.  There seems to be less and less space between one flare to the next.  Actually I’d go so far as to suggest that I have had a bad case of brain fog (it usually partners a flare) for at least a month. I am shamed to admit that the other day I couldn’t do a three-year old’s jigsaw puzzle for the life of me.  My niece, L was keen for me to ‘participate’. I realised quickly that what she was after was for me to do the puzzle and she would ‘assist’.  Hmm.  The only problem with her plan was that I had absolutely no clue what I was doing. My brain was out to lunch.

Eventually L’s father, who was watching this, came to my rescue.  Brothers are so good… when they want to be.  Anyway he had the puzzle sorted in a matter of moments and while I quietly swore at brain fog, I was equally glad that L’s teenaged brothers hadn’t arrived home from school yet. They would have loved that Aunty Cate couldn’t do a three-year old’s puzzle.  They laugh enough when they have to show me how to use my phone.  If it’s not too late I might have to take out a confidentiality contract with L and her Dad.

But back to the flare. I’m used to these.  More often than not they spring up unannounced and unwelcome when there is something going on in my head. No wonder I get fog, there’s simply not enough space in my head.

Today has been Mothers Day here, and I admit it is always a difficult day for me. Last year I skipped the issue by being on the other side of the planet.  Not so easy this year.

I’m not a mother. Never have been, never will be. Aside from pets and the odd ( not that odd) teddy bear.  And don’t think I’m somehow mourning for the mother I am not. I’m not. I am perfectly satisfied with having opted not to have children.  Actually I am relieved I saw sense at another time when my brain simply wasn’t working.

What is difficult for me is my own relationship with my mother. Out of respect for her, I’m not going to go into details except to say that we have always had a difficult relationship.  We have impacted each other’s lives in ways we probably didn’t intend and possibly regret.   At this stage it is something that I don’t expect we can ever resolve for a number of reasons.  It just is.

Actually my mother, at 86, relies on me a lot now. A situation I would never have imagined, but then sometimes life has surprises for us along the way.  I am the person she most relies on, and just as that’s not easy for me, I don’t imagine for one instance that it is easy for her either.  We simply go on from day to day, doing what has to be done.  Personally I think that is more important than grand gestures.

But I draw the line at Mothers Day. It’s not the occasion itself but more the hype.  As we fill lives and screens with pink sparkly images of perfection… Me? I cringe.  Perfection is not always what is real, and it seems to me that we are more able to accept that not every father is perfect than every mother being less than the ideal.  The hype, drummed up by marketers usually, ignores what is real.

I don’t in any way want to be critical of any mother, including mine. I simply think we need to be real. Mothers Day for me today meant picking my mother up after her church service, as I always do, and then back to her home for a shared lunch. Mothers Day wasn’t mentioned.  If that makes me a cruel, heartless daughter, then so be it.

The cost, of course, for me bas been this latest flare. The rest of the day has been spent in bed in a lot of pain. I hope it will ease tomorrow.

“She preferred imaginary heroes to real ones, because when tired of them, the former could be shut up in the tin kitchen till called for, and the latter were less manageable.” 

― Louisa May Alcott, Little Women

Fatigued Hope

Hope has been important to me for a while now.  Finding my own, and then holding onto it has been a break through for me in terms of my mood and my mental health.  But once I’ve got it, I admit that it’s not always that easy to hang onto.  This time it’s not my mood which is directly affected, although it’s clear to me that if I don’t get a grip on it soon, my mood could easily start to falter.

Right now I am so tired.  Fatigued seems a more appropriate word to use because tired just doesn’t quite capture the extent of it.  You know that feeling when you’ve taken sleeping medication, and your eyes are getting heavy, and you can’t concentrate any more?  I feel like I’ve been taking sleeping medication three times a day regularly, and am still trying to function as a normal, awake adult – without sleep.  It’s really not working.

I know that this is just standard for fibromyalgia, but right now my fatigue is worse than my pain (but don’t be fooled because that is still substantial).  All I want to do is sleep.  Give me a few spare minutes and you’ll find me drift toward my bed.  “Just a few minutes“, I tell myself.  But it will never be enough, and so usually I just keep going.  Actually right now I would have said I was sleeping better than usual.  But I wake up exhausted, and that is simply the way of fibro.  Apparently we don’t get any deep sleep, and so I find myself like this often.

My eye lids have been twitching (I’m sure there is a proper word but you’ll hopefully get the idea) for about five days now.  Initially I was worried, and wondered what was wrong with my eyes, but now it seems like it’s becoming normal.

I sat in therapy today struggling to comprehend what my therapist was saying.  I don’t have brain fog as I usually know it but it was just too tiring to follow one end of his sentence to the other.  And when I tried to explain it?  I didn’t get the message across.  He had been surprised that I was sitting there in pain (I’ve only had fibro for a year and been seeing him throughout that time).  Seemingly I should have had a sign around my neck.  While he heard that I was exhausted (and I appreciate that he did) it was difficult to get the full extent of my struggle across.

I’m getting the clear impression that if I look fine to others, then apparently I must be fine.  And isn’t that the difficulty of an invisible illness?  Fibro is one of many illnesses where a sign around the neck is important.  Of course I can tell people how I really am, but the repetition would drive anyone to sleep (including me).

Instead of driving people to sleep I keep it too myself largely. “I don’t want to complain”  “It doesn’t matter.”  There are lots of things I can tell myself but the reality is that largely it’s just easier to keep it to myself.  The thing is that quietly my hope is fading.  And I hate that because I just don’t want to go back there.

So what is hope in respect of an illness like fibro?  I don’t know.  This is a chronic illness.  There is no cure.  At the moment I can’t get medication to treat either the symptoms or the pain.  Oh, and I can’t afford alternative treatments right now either.  So how does hope fit into this scenario?

I have this sense that somewhere inside myself I need to come to a point of accepting the illness.  But how?  I don’t want this pain and fatigue for the rest of my life.  So how do I accept it without resigning myself?

My symptoms have got significantly worse in the year since I was diagnosed.  How do I have hope for my future with that in mind?  Right now my symptoms are dictating how I live my life.  I want to choose how I live my life, not have an illness do it for me.  How?  How do I be the one in control?

If you’ve had any flash of inspiration I’d love to hear it.  But don’t just tell me it will look better tomorrow, because I doubt that.  Tomorrow might be different levels of pain and fatigue but they will still be here.  That’s just the way it works.

“I want to explain how exhausted I am. Even in my dreams. How I wake up tired. How I’m being drowned by some kind of black wave.” 

―    Elizabeth Wurtzel

This Is Getting On My Nerves

Or an alternative title which I could turn into a song?

‘There’s Coke In My Veins’

How does that sound for a song title?  Lyrics have never really been my thing, but I had this brainwave so decided to share it with you.  Let me be clear though, that I am not talking cocaine here,  I mean coke, as in coca-cola.

Image credit: Mike Gonzalez (TheCoffee) Wikipedia.com

Right now my fibromyalgia is getting on my nerves, both literally and figuratively.  This past week I have started tingling (according to the texts) but I prefer fizzing.  I feel like someone came along in the middle of the night (Sunday night, I think) and switched my blood for coke.  It’s not just my hands and feet either.  It’s every where.  And I have this weird, what seems like a permanent state of feeling like all my hairs are standing up on end.  I am in a permanent state of shock.

I know using the word permanent is probably exaggerating, but on day five it feels like it has turned permanent, and I don’t like it.  Actually it’s very… uncomfortable and weird.

I learnt quickly that fibro is one of those conditions that is different for each person.  For me, it seems that nerve pain, fatigue and brain fog are perhaps the worst of the following list of symptoms.  Don’t be mistaken though, and think this is the complete list.  I’m sure most fibro sufferers could identify other symptoms that exist for them.

Here’s some of the symptoms of fibro:

  • Chronic muscle pain, muscle spasms or tightness
  • Moderate or severe fatigue and decreased energy
  • Insomnia or waking up feeling just as tired as when you went to sleep
  • Stiffness upon waking or after staying in one position for too long
  • Difficulty remembering, concentrating, and performing simple mental tasks (“fibro fog”)
  • Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
  • Tension or migraine headaches
  • Jaw and facial tenderness
  • Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
  • Feeling anxious or depressed
  • Numbness or tingling in the face, arms, hands, legs, or feet
  • Increase in urinary urgency or frequency (irritable bladder)
  • Reduced tolerance for exercise and muscle pain after exercise
  • A feeling of swelling (without actual swelling) in the hands and feet (actually I get this in my knees)

Fibromyalgia Health Center, Web, MD

As you can probably tell, it’s not fun.  As I said, one of the biggest struggles for me is nerve pain, which doesn’t even really show up on this list.  Regularly I feel like I have electricity pulsing through my body, some times burning as it goes, now tingling as it goes.  (My brother, who is lucky I love him dearly, kindly suggested I remove my fingers from the light socket).  The weird thing about nerve pain for me is that it doesn’t physically prevent me from movement, and actually sometimes movement is best because it masks the pain.  But then fatigue means that constant movement isn’t such a good idea, let alone a possibility.  I’ve learnt that the hard way.

This week has been a write-off as a result.  The fatigue and brain fog, added to feeling like a bottle of coke, leave writing too much for me.  My brain just won’t work how I want it to, and without the aid of spell-check you’d be unable to read this.  Reading other bloggers posts has also been pretty much out of the question because I just can’t focus.  I try, and find myself either distracted, or simply going back and forth over the same line.

So if you’ve missed my posts this week, this is my excuse. And if you think I’ve missed that special post you wrote and thought was a major contender for ‘fresh pressed’?  I haven’t missed it.  I will get there.  I have an enormous pile of posts to read.  It seems to be growing by the hour, and probably serves me right for developing an addiction to the word ‘follow’.  Meanwhile, fibro wins.  Damn it!

PS.  No sympathy required.  We all have our trials and battles, This one is simply one of mine.  Just send dark chocolate.

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”   

―    Haruki Murakami