Time is of the Essence

“Next Tuesday, we’re going shopping,” says my Mommy.

Monday arrives and I haven’t forgotten that we are going shopping on Monday; I just haven’t realised that it IS Monday.

One of my big problems is keeping track of time, especially dates. Birthdays and special events creep up on me and catch me unprepared all the time. I know when things are supposed to happen. I hear when some-one tells me about something. I also know how long it is supposed to take me to get ready to leave the house – I really hate being late, but I can’t seem to get a handle on this particular issue.

Like Adrienne Dellwo has said:

The farther out something is planned, the worse it seems to be. It’s like my brain files it under the heading “months away” and then never updates it to “next week.” If something is set for tomorrow or a week from Thursday, I do pretty well. Those things apparently go into the “really soon” file and stay more on the radar.

There’s a learning disability called dyscalculia – a learning disability that deals with math. It is similar to dysphasia, which includes those word-finding difficulties so many of us have. Dyscalculia not only impairs math and number abilities (forgetting concepts, transposing numbers), it also involves:

  • Difficulties with time: inability to remember schedules, keep track of time, or remember a sequence of events.
  • Spacial problems: impaired direction sense and memory of how things are laid out, leading to frequently getting lost or becoming disoriented.
  • Difficulty sight-reading music or learning instrument fingerings.
  • Inability to remember names.

72. manufacturers warrantyResearch shows that dyscalculia involves dysfunction in a specific part of the brain – all of the above problems stem from the same cause. It means that this is ONE problem only; and not a whole lot of unrelated issues being attributed to FM.

This doesn’t necessarily make me feel better after being at the casino last week and not being able to work out the action on the Craps table (I was a Craps dealer/supervisor for 14 years!)

Dyscalculia can occur as the result of some types of brain injury, in which case the proper term is acalculia (or Acquired Dyscalculia), to distinguish it from dyscalculia which is of innate, genetic or developmental origin.

Dyscalculia isn’t something you can take a pill for – it’s something you have to live with. Scientists have yet to understand the causes of dyscalculia. 119-fibro-fogThey have been investigating in several domains including short-term memory being disturbed or reduced, making it difficult to remember calculations (Does this sound like Fibro Fog to you?) I haven’t found any scientific research that says that FM causes Dyscalculia (if you do, please share it with all of us!) but it certainly makes it worse.

The good news(?) is that it is a recognised learning disability, just like dyslexia or dysphasia. If it causes problems for you at work/school, you can talk to your boss/teacher about having this learning disability without having to disclose that you have FM, or trying to explain brain fog.

Another One Bites the Dust

Back in April, I wrote the article that follows. And, despite writing the article myself, it appears that I obviously haven’t been able to identify where I stood within the grief scale.

Guess what? I now know.

How did I reach this epiphany? Well, recently Mommy mentioned (as carefully as possible) that she felt like she was stepping on egg-shells whenever she was around me. Then tonight, a so-called friend and I were texting when he wrote:

Last two texts I’ve got from you have been sarcastic and unnecessary and you think that’s how “friends” talk to one another. You wanna know something about me, I don’t wanna talk to people who are like that.

I answered:

It started because you wouldn’t tell me why you were feeling sorry for yourself…but as I said I’m angry so you needn’t talk to me anymore.

So I sit here on a Friday night, surrounded by all my friends (that is: alone!), as another one bites the dust!

Living With the Loss of You

There are 5 stages that make up the framework that allows us to live with loss: denial, anger, bargaining, depression and acceptance. They are tools to help us frame and identify what we may be feeling. They can also be applied our grief over the loss of our ‘old’ selves.

These tools are not stations on a train line. Not everyone goes through all of them or in a prescribed order. Have you been to any of these places? Stuck at one?

As you accept the reality of loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade.

But as you proceed, all the feelings you were denying begin to surface…

People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage like getting on and off a train. We may feel one, then another and back again to the first one.

At times, people in grief will often report more stages. Just remember your grief is as unique as you are.

Loneliness is the Most Terrible Poverty

lonelyI’m lonely.

I can’t even describe my loneliness

Mommy is stuck in bed: she can’t move (and Mommy, don’t feel guilty – you are entitled to rest and get better)…Thais is now in India (and Thais, no feeling bad – you keep having fun and sending back photos...the boy that I may have been interested in(and who I had hoped may help me escape this total solitude) is out-of-bounds…and I can’t confide in my cousin/friend (who ‘called’ the boy out of bounds) because I am still angry that she has imprisoned me in my isolation (whether the boy and I worked out or not)…

The last few days I have stayed in the same pyjamas, not leaving the house – swimming in my seclusion. Is there a record for how long some-one can stay in one pair of pyjamas non-stop?

I’m looking forward to the hospital because I’m hoping the higher dose of ketamine will let me sleep for the whole week – that’s a week less loneliness! (And I’ve organised extra posts for this blog, just in case I am unable to string two words together.)

I’m realising that I have nothing to do – no work, no friends, no life – and I’m hitting the ‘now what?’ time. I can’t be bothered with anything – it’s just sad. Despondency is the only word I can think of.

loneliness_working_from_homeI tried to distract myself by starting a new website – it’ll be called fibromodem.com – and putting everything in the one place. All I got was brain frazzled (and couldn’t do anything for 2 days – good thing that I save some extra research posts for such occasions)! The website will be up soon…it just seems that I need a little more time than I originally thought. I HATE that I can’t have what I want immediately (especially when I’m using it to hide from myself!)

I have no idea how to fix this problem. I have no idea how to meet any new people. I have no idea why all my old friends are gone.

I know that all of you (whether you’re married, attached or single) understand this without me having to find the right words, and I realise that many of you look to me for some answers; but this time, I have no solutions.

Blast Off -2 days

Two days until the beginning of the hospital visit (again!)

When we (the Team: my pain specialist, Mommy and me) decided we were going to try this ketamine thing again, my doctor suggested we put in a central line instead of trying to find veins for a cannula.

You might remember I had a lot of trouble with cannulae last time: 6 wonderful needles into my veins instead of what should have been only 2 or 3, and then, finally, a subcutaneous cannula in my tummy – to which I had a horrible reaction. So you can imagine how happy I was to hear that this wasn’t going to happen again.

In fact, I was so happy that I didn’t bother to ask any questions…off to Google I go, and now I’m a bit worried…

A temporary central line is a short-term, long, fine catheter placed in a vein, with an opening at each end used to deliver fluids and drugs. The central line is inserted through the skin into a large vein that feeds into a larger vein sitting above the heart, so that the tip of the catheter sits close to the heart. There are several veins that are suitable for access, and the line may be inserted above or below the collarbone, on the side of your neck, in your groin or at the front of the elbow. The actual skin entry site depends on which vein is used. AAAARGGHHHHH! I am really hoping they choose above the elbow – I seem to have gotten that impression from the doctor.

picc for procedureSo, at 9am on Wednesday morning, I am expected to arrive at the Radiology department of one hospital, where an interventional radiologist will use x-ray and ultrasound guidance along with minimally invasive techniques to insert a special hollow needle. Supposedly, I will be under conscious sedation (a twilight sleep) and be given pain medication in order to minimize any discomfort. Bit, it really is beginning to sound VERY scary!

A tourniquet will be applied to my arm (hopefully – I really don’t like the idea of a needle going anywhere near my neck!) and the area is cleaned and draped; a local anaesthetic is injected into the skin near the vein. The catheter will be inserted through the needle, threaded through the vein and positioned so the tip of the catheter is in the large vein that carries blood into the heart.

Next, about 3 hours later (or so I’ve been told, although my Google searches says it only takes an hour), I will go to another hospital. No, blood will NOT be gushing from the protruding tube! When the line is not in use, a plastic cap and a clamp to prevent leaking of blood close any part of the line that sits outside the body. It should be secured with a “Stat lock” device (ie without stitches), and can be left in position for several weeks to months as long as it does not become infected. Thank God I only have to have it in for a week!

And, then, the ketamine experience will begin again…

 

A Night in Paris

I am dead, wrecked, exhausted…but I deserve it.

Yesterday was Henry’s (Mommy’s partner) birthday. He turned 78. (It was also my father’s partner’s birthday but I am no longer in his life (see The Pain of Family vs the Pain of Fibromyalgia!) Now, Henry is very well off and has been so helpful to me, in every way possible. I am unable to give him any gift that he can’t or won’t buy for himself; but I am able to ensure that he is surrounded by his friends and family for his birthday. So, we had a party…

Henry was born in Paris – it was only natural to have A Night in Paris as the theme.

Front of Invitation

Front of Invitation

Front of Invitation

Back of Invitation

centrepiece 1We decided not to have snails and frogs legs, as most people wouldn’t like them, AND they’re REALLY expensive.

fruit platter food 4 food 3 food 2 food 1 eiffel towers

C'est moiThere were about 70 guests and I acted as the help; if I didn’t Mommy would have to do all the work and then she’d be in pain. This way, we shared the pain!

We tried to make the house look like a French bistro.

boxesentryway bistro
backyard 1

 

 

 

 

 

 

 

It ended up being a very successful party but I could really use a warm water pool right about now (and probably, a couple more days)!

Happy Birthday, Henry!

Real Magic

I am too excited to write a ‘real’ post.

For the last two weeks, I have been doing what I love most: planning a party. My nieces, Hannah and Naomi, are celebrating their birthdays together this year. Hannah is turning 7 and Naomi is turning 4. For some reason, they chose a MAGIC themed party…with a magician. So, tomorrow is the day and I can’t wait to see their reactions!

It is being held at an absurd hour – 9.30am on a Sunday morning! What is that? And it is being held at my Mommy’s house (because it is bigger and, supposedly, there will be 40 children!) But I have to be there before the girls so I can record the look on their faces when they see how I decorated the place:

40 jelly beans x 40 children = I had to count out 1600 jelly beans during the week - don't want the kids arguing that some-one has more!

40 jelly beans x 40 children = I had to count out 1600 jelly beans during the week – don’t want the kids arguing that some-one has more!

The view as the kids (and parents) enter

The view as the kids (and parents) enter

Pink and black is less 'adult' than the traditional magic red and black (or so we thought)

Pink and black is less ‘adult’ than the traditional magic red and black (or so we thought)
I blew up 81 balloons with my own little (?) mouth - I figured that it would help with the cigarette cravings! And then made this archway, according to instructions i found on the Net.

I blew up 81 balloons with my own little (?) mouth – I figured that it would help with the cigarette cravings! And then made this archway, according to instructions I found on the Net.

What kind of magic party would we be having without some magic potions?

What kind of magic party would we be having without some magic potions?

magic beans 3

And the leftover magic beans - can you guess how many are in the jar?

And the leftover magic beans – can you guess how many are in the jar?

Be greeted by dancing stars and cards

Be greeted by dancing stars and cards

My favourite part - the "Can you pull a rabbit out of my hat?" centrepiece!

My favourite part – the “Can you pull a rabbit out of my hat?” centrepiece!

Mommy and I made top hats from marshmallows (dipped in chocolate) stuck to Oreo cookies. The magic wands are orange sticks dipped in white chocolate.

Mommy and I made top hats from marshmallows (dipped in chocolate) stuck to Oreo cookies. The magic wands are orange sticks dipped in white chocolate.
A magic fountain and magic mirror...

A magic fountain and magic mirror…

Wet-wipes camouflaged as a top hat instead of serviettes/napkins.

Wet-wipes camouflaged as a top hat instead of serviettes/napkins.

Remember the puppet theatre from the school holidays? You can't even telll that we hid a piano behind it!

Remember the puppet theatre from the school holidays? You can’t even tell that we hid a piano behind it!

My special presents for the girls

My special presents for the girls

A child-free sanctuary for parents

A child-free sanctuary for parents

Magic loot bags

Magic loot bags

Phew! Then it is Henry’s (Mommy’s partner) birthday on January 6 and we’re doing A Night in Paris.

Bed-time now – I have to be up in the morning

A Different Pain in the Tummy

Just after writing my post last night, I began to feel some extreme pain in my new cannula position. Uh-oh!

Now, I jotted down notes about what happened last night (in really bad hand-writing). I’ll let you know why at the end but here are my contemporaneous notes:

  • Dinner – 6pm
  • Bing for My Nurse (MN) – tummy cannula hurting. Unknown Nurse (UN) arrives – MN is on dinner break: wait ‘til then? Sure, ok.
  • Ketamine alarm goes off – empty bag. UN comes in, turns off alarm: will be back to change bag.
  • Alarm goes off again. UN returns: right back with another nurse (Ketamine protocol)
  • Alarm goes off again. UN changes bag. MN will still come in after her dinner break.
  • Wait 15 minutes – pain increasing. No, it is not the drugs making me feel things!
  • Bing for MN: no-one comes.
  • Get up to go to nurse’s desk. MN and I return to room to check out site.
  • Need to change cannula site. Try 4 different places before finding good vein.
  • Ice tummy site as all swollen, inflamed and burning.
  • Feels like site is being torn open. Very hot!
  • Ask to see member of the pain team.
  • Crying
  • New Nurse (BN – Bitch Nurse) appears: Are you crying? Yes. Crying will make you feel worse. I know, but I hurt – I would like to see a member of my pain team. We have paged some-one, now stop crying!
  • 8.30pm – ask BN for valium. Told to stop crying again.
  • Between 10-10.30pm – Pain member arrives and prescribes antihistamine. Between BN and pain member, I feel like they think I am making up the pain; that I’m crazy but even I can see that my tummy is swollen, red, lumpy and burning hot.
  • Midnight – ask for seroquil when vitals being taken
  • 1.10am – BN changes bag without another nurse (protocols?)
  • 2.30am – ask for another valium
  • 4am – BN takes vitals – hoping to just get through the night. Have never felt this kind of pain before.
  • 7am – BN changes bag, still without another nurse!
  • 8am – Morning nurse takes vitals – Yippee! I survived!

Now the main reason I wrote all of this down was because I seriously thought something major was wrong with me and that I was being held prisoner in my hospital room. I could have called Mommy to take me away but where were we going to go? A hospital?

Supposedly, I had an allergic reaction – it could have been to the dressings, the cannula or the ketamine – and 24 hours later, I am still in pain (but much less, thank you). Just like I would never complain to a waitress before I had completed my meal (she might spit in my food!), I didn’t complain or make a scene but, needless to say, I have written an appropriate complaint to the hospital management.

Gotta say – so far, I would NEVER, EVER do this again!

 

Take Control!

Mommy came to the doctor with me today – actually she comes to every doctors’ appointment with me. It’s very helpful having her there: she remembers to tell the doctor things that I forget; she remembers things the doctors say that I forget; and when I’m just too tired, she can tell the doctor everything that needs to be said.

(Mind you, today, I was VERY vocal: I asked Dr B his age & if he was married! He is…but, hey! a girl’s gotta try!)

We often lose our voice, when we are tired and not feeling good – and instead let other people take control. I know how easy it is to let that happen – I let Mommy take control a lot of the time. Sometimes, it’s just easier.

It is difficult to cope with doctors, specialists, alternative health practitioners, boyfriends/girlfriends/spouses, parents, bloggers, employers (if you’re still working), etc. Everyone has an idea of how or what you should be doing. Guess what people, they don’t know everything. No one knows you better than you.

It’s not easy to get back some independence, when we have let others take on what we should be able to do for ourselves. You CAN speak up.

If you are troubled with how you are being treated, you CAN say so. Tired of taking drugs that aren’t helping? You CAN say no to them (and your doctor). Your boyfriend thinks you are being lazy? You CAN tell him he is wrong. Your parents think you are ‘just depressed’ – you CAN say ‘no, please listen to me’ (whether they listen to you is another thing, though).

So, how do you start taking back control? Firstly, start saying no to the things that aren’t working in your life. When the stressors, depressors, and all round toxic forces have been eliminated (or at least reduced)….then you can return to ‘yes.’

So what will you say ‘no’ to today?

Holy State of Amazement, Batman!

I am in a state of amazement…

Yesterday, I went shopping with Mommy. I left her at a massage place for 40 minutes of bliss so I could explore. In that 40 minutes, I hit Target, Best ‘n’ Less, The Reject Shop, Home Express and Vodafone. WOW, huh?

I figured that I hadn’t been shopping since before my operation, and I wouldn’t be going for at least another full week. So, weighing up the pros and cons, I decided it was worth using all my energy to do this, and I was ready to write off today.

And, when I met up with Mommy, we hit Big W, K-mart and a couple of little shops.

Waking up today, my ankles were their normal very-painful self but I felt surprisingly good. I FEEL good. What the…?

How cool (and cheap) is this!

Today, I went back to K-mart to pick up a garden swing that I saw, then I did some gardening, then I put together the swing with my uncle…and, then I felt tired (quite understandably).

So, I am in a state of amazement.

My thoughts on the matter:

  1. My body realises that I will resting for a whole week (in two days); or
  2. All those supplements, that I’m paying a fortune for, a finally working; or
  3. I’m about to crash BIG TIME!

 

 

The Pain of Family vs the Pain of Fibromyalgia

Bet you thought the saga with my father was over, huh? Wrong!

So, first, we had the letter I sent, followed by the thoughtful text he sent…and then silence on the western front.

When we had the family event for my brother’s birthday, I asked my brother if he wanted to invite his father (even Mommy thought it was a good idea). My father decided he would do his own thing with Mitch.

A couple of days before my operation, my father called to wish me luck. It was a very abrupt phone call with no other discussion permitted.

I decided to send some of the photos of my brother and his son (at the birthday party) to my father, as my brother would never do it and I thought he would like them. I didn’t attach a message – they just were.

So, a couple of days ago, I receive an email from my father:

When I was in rehab, you had a letter delivered, which everyone in the room read, attacking both Yvonne and myself over things you know nothing about. We are very upset about this, and therefore if you want any sort of relationship with me or Yvonne, you will write and have delivered both a letter of apology to Yvonne and myself. Dad.

I waited a day (as suggested by my Mommy) so I wouldn’t overreact then replied:

Yes, Dad, I sent a letter marked PERSONAL to you; and you chose to share it.

The letter was not meant as an attack on either you or Yvonne – it was a missive to you (and you only) describing my feelings; the letter was an explanation of how I feel. And I will not apologise for my feelings.

After much thought, I believed that this was the only way for me to communicate to you my point of view. I spent a lot of time and emotion writing that letter so that you could understand me. It upset me to write the letter but I thought it was necessary as it was becoming impossible to approach you alone, and in a non-emotional state (every phone call with you ended with me in tears).

I had hoped that the letter would encourage you to acknowledge my feelings; and allow us to talk about them and your reciprocal feelings. But I guess not.

P.S. I sent the photos because I thought you might want some photos of your son and grandson. Don’t worry – I won’t do it again.

Today, I received a reply. My first thought when I saw the email was ‘leave me alone!’

The whole reason I wrote the letter was so I would no longer be stressed by the situation and here it is, encroaching on every day. And, in my recuperating state, I just don’t give a damn. I hurt so just go away!

Anyway, his email:

Firstly, Yvonne has been my partner for over 20 years, and we do not have any secrets.

Secondly, I do know the difference between writing about feelings and unsubstantiated rhetoric. Writing that Yvonne is alienating me from my friends and that I am only staying with her because I have nowhere else to go is uninformed bull and just plain nasty. This is what I want the written apologies for, after which we are willing to sit down and discuss your feelings and anything else you might want. Dad.

I just want this to end – I had already come to terms with the fact that I would be upset to not have a relationship with my father; but that was more because he is my father, not because of the wonderful, supportive person he is in my life. I have had the time to think about it all logically and unemotionally and decided that I really wasn’t going to be missing anything. But it seemed that this was never going to be over and I would have to deal with the stress of it forever.

So, my reply,after thinking about it for a day, just in case I am being overemotional or overreacting or just plain over it:

As I said in my original letter, concerning the two statements for which you request an apology, ‘…that’s just my psycho-babble – I could have it very wrong…’ and, obviously, you think I have; so, yes, I apologise (you can have that in a written letter).

Nonetheless, I wanted to talk, about the topics in the letter, with you alone (hence the personal letter). It has nothing to do with having secrets from Yvonne. It has to do with how you and I relate to each other.

You have made it clear that you are not interested in ever ‘choosing me…’ so, I guess, following receipt of my written apologies, we will endeavour to preserve some sort of relationship.

And I have two pretty, little pink envelopes with two pretty, little pink cards inside that say:

I am sorry that some of the comments in my letter offended you. It was not my intention.

As I said in my original letter, the comments, which you have described as unsubstantiated rhetoric, were ‘just my psycho-babble’ and that ‘I could have it very wrong.’ Obviously, I did; and I apologise for that.

Can it all be over now? Please?

P.S. For those who were worried, my shoes are all lined up like soldiers along the wall now thanks to my Mommy and Henry (her other half).