Category Archives: Fibro

So I Haven’t Written About My Health in Awhile

Posted on by

Mostly because there is so much other stuff going on. But, truthfully, I’m not doing very well.

Part of it is all the stuff I am trying to get done with the move. Although we are paying for the moving company to pack us, I still have a lot of sorting and organizing to do, along with cleaning the flat to ‘leaving’ level. A lot of that cleaning will happen next Sunday after all of our stuff is moved out, but I am doing some of it over the next week.

All that bending and stretching and leaning and pushing and pulling means I am sore. A lot sore.

Muscles anterior labeledAll the places I am sore.*

It’s not helping that I am not resting as much as I should, and I know this. On a regular Monday, Wednesday, Friday, when Adam is in daycare, I usually work in the morning, have lunch, work for about another hour and then have a rest until pick up time. I haven’t been doing that this past week or so, so I can get more done, and probably won’t be doing it this next week either for the same reason.

I am also, of course, working. Major stuff going on with my biggest client. Other majorish stuff going on with another client. Possibly another client in the pipeline.

The good news is that my mental state is excellent.

But I’m going to be sore and tired for awhile. I’ll try to not be too cranky!

*Having the ‘are pictures necessary’ debate on MN again. Still think it’s silly in this instance. I mean, do you really need that image?!?!

I Really Did Intend for Adam And I to Go Out and Do Something Fun Today…

Posted on by

Thursdays are now earmarked as Mummy and Adam fun day. Monday, Wednesday and Friday he’s at daycare. Tuesday we need to run errands. So Thursdays are suppose to be fun.

Instead we are stuck inside. Partially because the weather is horrid and there really are no indoor fun activities for a toddler in Belfast City Centre. Mostly because I am very very sore and very very tired.

I had a migraine on Monday which was a good day to have one as Simon took Adam to daycare and picked him up. So I had the whole day to rest. Except that my Migraleave failed and I continued to puke into the night.

And then it was Tuesday. Migraine Hangover Day (TM). I used to spend that day in bed as well. Except now I have a toddler. And a husband who had to be at a remote campus for a thing, so he couldn’t take the day off. And no food in the house. So I had to take my hungover self and my toddler to the shops. After dealing with 3 temper tantrums. In a row. One because I needed to eat breakfast and he wanted to play. One because I need the loo and he wanted to play. And one because I, apparently, picked a pretzel up off the floor in a wrong manner!?!

Anyway, we got ourselves out the door. I offered Adam the choice to walk or ride in his pram, he choose the pram. Right there is a signal, along with the 3 tantrums, that he was either not feeling well or really tired. He loves to walk. So we do our errands and at the end of Tesco I notice he’s yawning his head off. So I push the pram into lie down position. And he does his ‘But I’m not tired Mummy’ shriek for 2 seconds and falls asleep. And sleeps for three hours!

If I had known he was going to sleep so long I would have lay down as well. But he has this psychic ability to wake up just as I’m falling asleep, so I didn’t bother to try, eating lunch and lazing on the sofa instead.

In any case, 3 hours of sofa rest does not equal a day in rest to finish recovering from a migraine.

So Wednesday he’s back in daycare and I not only had to catch up on my work from Monday but I have the washer repair man and some guys to finish fixing the water damaged bathroom wall coming. So rest was, once again not in the cards. I did manage to lie down for about an hour in the afternoon, but still not enough rest.

And then it was today. And Adam’s home. And I have zero energy. And the weather is total crap. So we stayed home.

We played on the floor some with both puzzles and trucks. We watched TV some. I tried to get him to nap in the morning. No go.

Then we had lunch.

Adam had scrambled eggs with cheese and tomatoes: –

20110811-122234.jpgLook! A picture!

I had scrambled eggs with yellow peppers and spring onions: –

20110811-122304.jpgAnd another!

We both had some corn bread, thanks to my friend Lisa in England who sent me a care package last week: –

20110811-123727.jpgThree pictures! 🙂

I have no idea why I took pictures, BTW. I just did. 🙂

Anyway, Simon managed to come home early today and I went and lay down for about 2 hours. And Simon managed to get Adam to finally nap.

And so tomorrow is Adam’s first Friday in daycare, ever. And I have to finish catching up with work. And go buy some more groceries (what are we having for dinner tomorrow?!) without a toddler in tow. Oh and pick up the dry cleaning.

And, hopefully, have a nap.

Next week, we’ll do something fun.

I hope.

Pin Point Pain

Posted on by

Pin point pain is the name I have given to those sudden unexplained pains that come and go in an instant. I have no idea if they are called something else by the docs.

They are, in a lot of ways, worse than the constant ache in my upper arms. A constant ache can be adjusted to, accepted and dismissed, to the point that it feels really odd when my arms don’t hurt.

But a pin point pain is sudden and harsh and unpredictable. Suddenly, I hurt a lot more. And just for a minute or less. Sometimes they are so strong they leave me breathless. Sometimes I barely register them.

I think these pains are a good indication that the latest theory of Fibro is correct; that it’s not that I’m actually in pain, it’s that the pain receptors in my brain are working incorrectly leading me to believe I am in pain. And the pin point pains are a sudden ‘misfiring’ of those receptors, sending a strong pain signal. For a pain that isn’t there.

Which leads me to the question; why can’t they find a med to fix the misfire? I mean, my brain misfires all over the place already, this is why I have depression and anxiety. And for those I take meds. So where’s the meds for the pain receptor misfire?

Eh?

I Don’t Know How Long It Will Last

Posted on by

but last night Adam slept from 8 – 7. He hasn’t slept that late in, possibly, forever. Never mind without a peep.

Well, not a peep. I did hear something around 2 am. And then heard nothing. And I mean nothing. Not even his snoring. And he snores like his Daddy snores. Being an anxious person I had to get out of bed and make sure he was okay. And to pee. 🙂

He was fine. But I was up for at least another 30 minutes. My stupid brain.

At least Fridays are my morning off and Simon is still on holiday so I got to laze in bed for another hour or so when Adam woke up at 7. And tomorrow is my other morning off and it’s Saturday so more lie in for me!

I was still exhausted today. So tired Simon actually said I looked tired, which I rarely look. I had a long nap after lunch and that helped some.

The other good news is that the cortisone shot I had in my hip seems to be doing some good.  For the first time in a long time it doesn’t hurt. Neither do my knee or my foot. It’s very odd to not be in pain down my left side. The Ortho said if it was going to work I would definitely have less or no pain all down my leg. And he was right. He’ll do a follow up call in about 5 weeks and when I tell him it worked he’ll do another shot in a couple of months. A person can have 3 a year, if it seems to work.

There is definitely something further wrong with my knee but there is nothing they can do about it. And I’ll never be pain free, thanks to the Fibro, but at least things are much much better.

This was suppose to be a post about Adam’s sleep. ::shrug:: I’ve had some wine. I’m rambling. 🙂

 

Mummy’s Sick Day

Posted on by

What’s that you say? Mummy’s don’t get sick days?

Usually true. But this Mummy has been feeling horrid for at least a week. Missed sleep, stress of ill boy, stress of an emergency with a client (which is thisclose to being resolved, thank god) and, as of this afternoon, a low lever fever led to me saying to Simon ‘I’m taking to my bed on Thursday.’

And I did.

This, of course, was only made possible by three factors. Factor one: Adam at daycare. Factor two: Simon off work on holiday and able to get Adam to and from said daycare. Factor three: the ability to ignore my to do list, which is still as long as my arm and growing all the time.

So I got up with my boys as usual. And the second they were out the door I was back in bed. And there I stayed. Slept. Read some stuff on my phone. Actually did about 5 minutes of work dealing with said clients said emergency. Ate lunch in bed. Slept some more.

I’m still not feeling great and will try to have an early night. But I would feel worse if I had pushed myself, my spoons were so low already.

So Mummy had a sick day.

And feels a bit better for it.

Memories…

Posted on by

After a month of a sick child equalling very bad or very little sleep my memory and aphasia have, once again, taken a nose dive. When this happens I always start thinking about memory and memories in general.

I have very few childhood memories. I have no idea why this is but you’ll find my brother says the same thing. Makes me wonder, sometimes, what we’ve both blocked.

The memories I do have are (mostly) good ones.

I remember being in our condo in Manchester Connecticut and my dad bought a new stereo that could record tapes and my brother and I making a recording and getting called to dinner. I remember then wondering why all that time at dinner wasn’t a big empty space on the tape.

I remember my dad’s CB radio in our playroom of our first house in Westport.

I also remember having cousins or maybe friends over to stay and we were all sleeping down in that same playroom and there was a burning smell (I was asleep) and I woke up to a house full of firemen because we had placed a sofa cushion over a light and it had burned.

I remember sitting under the big tree in front of that same house crying as my divorcing parents fought in the living room. My brother was with me.

I remember the poem my step-dad wrote me when I got my stereo for my birthday. Not exactly what it said but that he went to the trouble. Something about ‘always trying to do what she aughta.’ He was lying. :O)

I remember packing my car to drive to Iowa to go to University.

And every time Adam climbs up on a piece of furniture I remember a picture. It is of me as quite a small baby, only a few months old, if that. My mom is holding me on a sun lounger in the backyard of our house in Holliston MA and my brother, who is only 22 months older than me,  is in the act of climbing up to join us. Adam climbs just like his uncle.

I do often wonder, though, what I’ve forgotten…

This Past Weekend My Leg Was Quite Bad

Posted on by

after a week of a 28 pound child spending most of his time in my lap, on that leg, it’s not surprising.

Sitting on the floor, which I used to do all the time and prefer to sitting on a chair, hurts. A lot. Especially if my leg already hurts.

But, for the first time ever, on Saturday, Adam came over to me and took me by the hand and asked me to sit on the floor and play with him. He usually prefers to play by himself so him asking me to play was momentous.

So, despite the pain in my leg, I got down on the floor. We looked at books and pushed cars around and, for some reason known only to him, held the pieces of the big puzzle in our hands. When I tried to lay them out and put them together, they were very decidedly picked back up and put back into my hands!

Iggle Piggle Card!!

Did it hurt? Oh hell yes.

Did I do it for long? Not really. Maybe 20 minutes.

Was I happy to do it? Oh hell yes.

And I think that’s the thing non-parents and even, sometimes, my husband, don’t understand about being a mummy. That you’ll do anything for your child. Even cause yourself pain, lose yourself sleep, hold your bladder or not eat, if your child needs you for something.

Granted, playing on the floor or not playing on the floor is not a need, per se. But my son asked me very directly to join him for the first time ever. He came over to where I was sitting on the sofa and took my hand and most definitely asked me to sit on the floor with him.

And so I swallowed my pain and went with him.

And would do so again in a heartbeat.

Playing With My Son

Posted on by

Today Adam and I are off to view at flat at noon so have spent the morning playing in the house. He watched some CBeeBies, managed to draw on the front room door while I was on the phone, so had timeout (it wiped right off, BTW), played with his barn and then sort of wandered around so I asked him if he’d like to play with puzzles? He loves puzzles so I got an enthusiastic nod of the head.

Now anyone who has read this blog for more than 2 seconds knows I have some minor mobility issues so playing on the floor is very very hard for me. Alas, the puzzle Adam picked was this Tractor Floor Puzzle that his aunt and uncle sent him for his birthday

I love this puzzle with it’s big colourful pieces and interesting ending shape but it has to be put together on the floor or a table. Adam isn’t quite up to sitting at the table so on the floor I go. Which hurts.

But I do it anyway, because it’s a chance to sit with my son and do something we both enjoy. Once it was together I suggested he grab one of his board ones that can be done sitting in my lap but he was done with puzzles just then.

So maybe I can’t play with hours on the floor, or run around after him the way Simon does, but we do play. In fact, he’s just brought me a board puzzle. I think we have just enough time to do it before we have to get ready to go out.

 

My Greatest Fear

Posted on by

I can’t link to it, because of The Times paywall, but Melanie Reid’s Spinal Column in today’s Times Magazine really hit home.

Her bio from the magazine says “Times columnist Melanie Reid broker her neck and back last year. Now back home after 12 months’ rehab in hospital, this week she reflects on her changing role as wife and mother.”

She currently can’t walk and can barely use her arms. She is trying very hard to walk again. But the thing that frustrates her the most? The loss of her hands. She says “I can cope with being in a wheelchair; what cripples me is my numb, clawed fingers.”

Oh yes. That is what scares me. That the arthritis in my hands will become so bad that I won’t be able to use them. Won’t be able to type or write or, some day, drive again.

Melanie’s son is in University, but she still laments that she can’t help him as she used to. He rings, during exams, looking for help with a headache and a lack of food. And instead of being able to jump in her car and bring him migraleave and some food, she talks to him on the phone.

My son still needs nappies changed and picking up and helping with getting dressed. Some of those things will pass soon, but some will go on for years yet. What if my hands stop me from doing them? I already can’t play with him as much as I would like as I can’t sit on the floor for long because of my legs. How much more will I have to hand over to someone else if I lose my hands as well?

I already get frustrated with opening packets, jars, sometimes even the milk jug as my fingers refused to grip them hard enough to turn. I have items that help, rubber mats and things, but sometimes stubborn me would rather keep trying, to deny that I can’t do it, then spend the minute to dig them out of their drawer.

And, of course, I have Simon. Who always comes right to me if I say ‘Can you open the milk, my hands are quite bad today.’ But I hate having to ask.

And, let’s not forget, I am a graphic artist. Yes, I use a mouse not a pen and paper, but what if I lose even that ability? Terry Pratchett, world famous Disc World author, turned to voice recognition software when he began to show signs of Alzheimer’s disease, including some neurological issues with his hands. I don’t think the same would work for a graphics. How to you speak your graphic thoughts out loud?

So it worries me. The possible loss of my hands.

But, like so many things in my life, there is nothing I can do about it. If they stop working, I’ll cope. I’ll cope as I always do.

But I’ll hate every minute of it.

So My Last Post Was About Pain

Posted on by

which I talk about a lot on here.  But I almost never mention the most frustrating part of fibro, which is the fog.

The fog is a condition where your brain is, simply, foggy.  This leads to aphasia or partial and total language impairment.  Well, technically, partial is dysphasia, but it is rarely used that way these days.

Anyway, it is incredibly frustrating.  It means you cannot, for the life of you, think of words.  Sunday it took me at least 30 seconds to come up with the word screwdriver.  Today it was about 20 minutes until I could tell Simon I thought Adam should have rice cakes for snack. Rice cake was the impossible word. I wound up pointing at them instead.

I don’t know if anyone who has never had this can understand how it feels and how frustrating it is. You know the word, really you do, but it just won’t come out of your mouth.  It feels, sort of, like a block on  your brain.

For someone like me, who revels in words, in writing, in speaking, it’s my worst fear realized.  It’s what I imagine dementia must feel like in some ways.  Knowing you know something but it just won’t come to the front of your head.

In any case, this has been a particularly bad week for it for some reason.  I haven’t been getting enough rest, but I never do, so I don’t know why it’s so much worse this week. But it is.

I’d tell you more…but I’ve forgotten the words! 🙂