Category Archives: Fibro

Some Day I’ll Realize

Posted on by

that I really can’t keep going and going and going and going. Because I’ll end up in tears sitting on the step stool in the kitchen with my son sobbing as well as Daddy walks in the door from work.

And then I’ll need to take a taxi the next day for school pick up and to get Adam home.

And I’ll get nothing accomplished during my Adam free time except eating too much chocolate, drinking too much coffee and reading MN (you can never read too much MN).

No more long wanders through City Centre on days that I am picking up and dropping off Adam from school/day care. I probably walked 10 miles yesterday between the school run and shopping.

And I paid for it last night and I’m paying for it today.

So instead of working on the new website or folding the laundry or uploading stuff to Mumsnet Belfast I’m sitting here.

Eating too much chocolate and drinking too much coffee.

And the taxi back to school is booked.

The Things I’ve Lost

Posted on by

because of my chronic pain: –

  • Shopping all day long. Now shop ’till you drop means about an hour, two if I’m lucky.
  • Fountain pens. Can’t hold any sort of pen for long now. Writing on the computer just isn’t the same.
  • Beautiful notebooks. No point in having beautiful notebooks if you can’t write in them.
  •  FM heels. I haven’t worn a heel higher than about an inch in about a decade.
  • Dancing the night away. Only if I want to not move for two days afterwards.
  • Working full time. I do miss it, sometimes. Having an actual job in an actual office. Not that I don’t love working for myself, I do. But it would be nice to have more money. But that would mean more work. Which I can’t do.
  • Playing on the floor with my son. Lately my leg has been so bad (Ortho referral being waited on. Again.) that I can’t even sit in the bean bag chair for long. Makes it hard to help him lay out the 1,000 pieces of train track he got for Christmas.
  • A full nights sleep for more than one night in a row. I honestly don’t remember when I’ve felt rested for more than a few hours. I get one good night and then four or five bad in a row. And I can’t exactly nap in the afternoons. Except on the weekends.
  • The knowledge that doing something today won’t mean I can’t do anything tomorrow. Especially if I sleep badly.

What brought on this maudlin post? The fact that I’ve been awake since 0345, again, after several nights in a row when I appear to have slept all night but didn’t feel like I did, so I must have been at least partially waking up every night. Most likely brief bouts of awakeness, if not awareness, when I’ve rolled onto my bad leg.

And the fact that Simon is away to Dublin until very late tomorrow night. So no rest for me. Adam is at daycare for a half day today, I need to go get him in about 45 minutes and then, of course, tomorrow is Saturday. He has his class in the morning, so we’re out of the house by just before 10. I may get some ‘sitting around doing nothing’ rest if he sleeps tomorrow, but won’t get a sleep in the afternoon myself because the grocery order is due and I have some work to finish.

So I’m feeling a bit sorry for myself. Okay?

Why I Don’t Work Full Time

Posted on by

1 trip to school

1 walk to the bus

1 bus ride

1 shopping trip

1 bus ride

1 monitor setup

1 ride in the car

1 meeting over coffee with a client

1 meeting/networking event with strangers

Means I’m out of spoons at 3pm

Still have to do:

1 pick up of a small boy from child minder

1 dinner cooked

1 boy into bed, with no help as Simon works late on Wednesdays

So I’m about 3 spoons short…

I’m Not Doing Very Well…

Posted on by

Adam has been having nightmares, which he seems to sleep through, but once I hear one I can’t resettle to sleep until I’m sure he’s moved through it so I wind up awake for at least 20 minutes, sometimes an hour.

We think something is going on at his daycare, although they say there isn’t. He’s only there for 5 more sessions and then it’s child minder and school so we’re just going to plow through.

Anyway, lack of sleep is making me sore and grumpy and not feeling like doing anything except sleep and eat. Really great for the eating plan, no?

So there you go. Now you know why no updates.

Hopefully I’ll get some sleep this weekend.

My Current Goal…

Posted on by

I have taken up yoga again, using an app on my iPhone. It’s a fab app where you put in your level and what you want to do and for how long and it gives you a program to follow.

I have been concentrating on stretching, thanks to my fibro, and have found a fantastic 42 minute program that I have been trying to do at least 3 times a week. Not sure how it’s going to work once I have to get Adam to preschool every day, but for the next few weeks I’m going to do it.

It’s a fairly straightforward series of positions, starting standing and ending up on the floor. And I can do all of them.

Until the end. When I get to half boat pose or Sahaja Navasana: –

Half Boat Pose

Half Boat Pose

Credit

In the program you are suppose to hold that pose for 45 seconds. Which doesn’t sound like much, does it?

Try it. I’ll wait.

How’d you do?

I currently can hold it for, about, 10 seconds.

My goal is to hold it for the full 45.

I’ll keep you posted…

Why I really Bought A Tablet

Posted on by

If you happen to read my Business Blog for Designed To A Tee you will note that I bought a tablet this week.

It wasn’t the tablet I crave, which is an iPad, but a nice little Android tablet that was 1/3 the price of a iPad.

As it says in that blog post, I did buy it so I could learn about Android. But I bought for another reason as well.

My hands.

At 43 years of age I have mostly reached the point where I cannot hold a pen for more than a few minutes. So I can sign my name but can’t really take notes in a meeting. I can make out a cheque but I can’t write in my journal.

And I need to be able to do all of those things, from note taking to journalling. And sometimes you don’t have your laptop with you. So you have your tablet.

I have been using my iPhone for these things, but the keyboard on my tablet is so much bigger I can practically touch type on it, as I am on this keyboard as I type this. Not quite as fast as I type on a keyboard (which is somewhere around 80 – 100 wpm) because the onscreen keyboard doesn’t react as fast and because it’s not full size.

But faster than on my iPhone. Easier, also.

So I bought a tablet.

I love her.

Her name is Sally.

This Must Be What Normal People Feel Like

Posted on by

For the past two weeks I have been working my butt off, both for work and around the house. My in laws were down this past weekend and so the house needed a tidy, which was on my schedule anyway. The whole house gets cleaned from top to bottom twice a month with spot cleaning in between and last week was my week to do the overall clean.

Usually after I do my overall clean I’m not good for much else that weekend. It’s part of the reason it only gets done every other week. Some may call it slattern. I call it self preservation. It hasn’t killed anyone yet, so I guess it’s okay.

Anyway, usually a week’s cleaning equals at least one day in bed on the weekend. I did wake up feeling sore, tired and headachy on Saturday, but it passed with food and the double aggravation of the late Tesco delivery and trying to get the straps on Adam’s car seat adjusted and the seat into the in laws’ car so we could go out for the day.

Sunday I did spend a fair amount of time resting. I didn’t sleep well Saturday night due to pain and so when Simon didn’t sleep all that late in the morning, I headed back to bed for awhile. And then did the same in the afternoon after lunch.

But overall? I feel better than I’ve felt in ages. So well in fact that I continued with box unpacking and house sorting on Monday afternoon, without resting at all. I can usually do about a hour of unpacking and then need to at least sit down, if not lie down, for an hour or two. Yesterday I started working at 730 when Simon and Adam headed out and didn’t stop until I left to pick up at Adam at 3, which included running some errands. Of course I had some lunch, but that was about 20 minutes!

I am waiting for it all the catch up with me. I am waiting for the day I get Adam to nursery, come home and sleep until pick up time. I imagine it will come in the next week or so.

But I could be wrong. Maybe Adam mostly sleeping through 8 – 6 is all my body has been waiting for.

Fingers crossed…

Learning To Accept My Limitations

Posted on by

So, as I’ve said, Sunday the 5th was my birthday. And we had plans for the Saturday. Plans for lunch, for a nice evening meal, a glass of wine, some cake.

Instead, I woke up with a migraine Saturday morning. So I spent the day in bed throwing up and resting. And resting and throwing up. And sleeping. And did I mention throwing up?

And I cursed my head. My body. For once again letting me down. For ruining my plans. Something it does all.The.Time.

I mentioned this to my mother and she, correctly and sagely, pointed out I should get over it. It’s the body I have.

So I am trying to remember that. That it’s the body I have and the world isn’t going to end if all of our boxes aren’t unpacked yet. Or if Adam’s toys aren’t picked up.

I’m finding it very hard, though.

To accept that there are days when, truly, all I can do is sit and rest. Unfortunately, sometimes those are days that Adam is home. And we do nothing but play quietly, colouring and watching TV. And I try to at least take him for a brief walk or have a romp in the back garden. But sometimes even that doesn’t happen.

I know soon he’ll be in school full time and it won’t be a problem any more. For one thing, if he goes where we want him to, it’s a 1.5 mile walk one way to get there! For another, of course they have recess or whatever they call it in the UK.

But I still wonder what he’ll remember. Will he just remember that Mummy loved him always? Or will he remember being bored out of his mind stuck inside because Mummy Hurts?

I’m also really fed up with not being able to do what I want when I want. To run out of spoons some days as soon as I get out of bed.

And it happened again today. I woke up at 5:10am with a headache that felt like it was heading into migraine territory. So I got up and took some Migraleave. And I never puked but I was in bed all day with pain. And it was a beautiful sunny day. And I missed it. Again.

Simon and Adam went to the park. And for a coffee. And to get some shopping done.

And I lay in bed all day. In pain. Sleeping. Missing it.

Again.

And I don’t accept it. I don’t know how to accept it. I also can’t change it.

I like to think I live my life not worrying about things I can’t change. Except I can’t change this and I worry about it. It’s a huge disconnect in the way I want to be, to live.

It has taken me over a week to write this post and I’m still not sure what I am trying to say. But I think it’s time to hit publish and get it out there.

I usually like to end on a high note.

I have no high note on this issue.

So This is What Lack of Pain Feels Like…

Posted on by

Last night as I was heading up to bed it occurred to me that my arms didn’t hurt. At all. I could lift them over my head easily. I kept swinging in them in amazement!

This morning they are sore again but not as sore as they have been recently. Simon and I were discussing why that might be.

The first may be medicine. I took Migraleave yesterday for my headache. It is a combination of paracetamol, Codeine and something for nausea. It’s entirely possible the codeine killed my fibro pain. Too bad you can’t take codeine long term.

The second may be a lessening of stress. You see, our previous landlord had not returned our deposit in over a month, on top of my largest client writing my cheque wrong so money was very very tight for awhile, while I waited for the cheque to be reissued and then clear the bank, and I was in the middle of investigating our rights in terms of the deposit.

I had actually written a letter threatening the landlord with Small Claims Court that would have gone out Thursday, except I was home ill. Karmatically, the cheque from the landlord landed on our doorstep Thursday. That would have been a red faced phone call if I had made it to the post office!

In any event, our money issues have lessened thanks to my cheque clearing, the deposit showing up and Simon getting his pay on Thursday. Then, in a true Nearly Christmas Miracle, I got a letter from Revenue and Customs to tell me they owed me nearly £500 from an overpayment in 2005! Of course, if I owed it to them there’d probably be 6 years of interest on it, but I’ll let it go and receive my payment gratefully!

So whether my pain lessening is medical or circumstance, I think I’ll just enjoy it.

And perhaps try a Migraleave next time my arms are really, really bad.

Either that or rob a bank! 😉

So, As I Said, It’s Been a Long Week…

Posted on by

This was due to me working over 13 hours for my main client, over an hour for another client as well as my usual ‘mother to a toddler’ type activities.

Now, I am well aware that plenty of women work 40+ hours plus their usual ‘mother to a child/ren’ type activities. But most, if not all, of them do not have my health problems.

And what not getting any rest Monday (worked, then headed to get my new varifocals

Emperio Armani EA9774 from Specsuperstore.com

My new glasses.

and do some errands) or Wednesday (lovely morning with a good friend from England, then worked starting at 2pm, getting home at about 10pm) led to was my being flat on my back all day Friday and most of today. I was in so much pain yesterday I was in tears at dinner and Simon had to do some of bedtime.

I then had a lie in today and then went back to bed for 3 more hours while Simon and Adam headed to the park and get some groceries. And then had lunch and a very hot bath and finally feel about 95% of well.

And this is why I no longer have a full time job and doubt I ever will again. Or at least not a full time job that is 8 hours in a row 5 days a week. I could see me working that many hours, but stretched out over 7 days, in fits and starts, so I have time to rest as well.

It does make me wonder how I would be if I had been working full time when my fibromayalgia started. Would I have had to quit my job? Probably.

So no matter how much I hurt sometimes and how tired I can be, being the mummy of a toddler, I have another reason to be grateful for my son. His birth gave me the strength to strike out, open Designed To A Tee and work for myself, as and when I can.

So, thanks Adam. You rock!