Category Archives: Fibro

Pain

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I haven’t been posting much because I haven’t had much to say.

Yes, I know I am two months behind with Adam’s newsletters. And, yes, I know I have never written about my trip to Dublin. So I have things to write about. I just have nothing to say.

One reason for this is my current levels of pain. My bad leg has been hurting worse than ever. In fact, it’s so bad I’ve been limping. I start acupuncture in a week and we’ll see if it helps.

But the thing about pain is that it is consuming. There are things that *have* to get done, i.e. childcare, and that takes priority over writing in this blog. Ye old spoon theory strikes again.

How can it take spoons to write, you might be wondering. Well, then you’ve never written! Everything takes spoons.

And for right now? I’m out of them.

I’ll have more in the morning, of course. But those are already laid out for using. For work, for making dinner, for folding laundry, for walking to get a small boy from daycare. If I have a chance to rest, maybe I’ll have a spare spoon to write another entry.

But maybe I won’t. Only tomorrow will tell.

The Big News In Chonic Pain This Week

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Is that The Spoon Theory is now available in several languages.

While I 100% agree with The Spoon Theory, I do think it leaves some things out.  Like the fact that there are ways to preserve your spoons, when necessary.

How?

Well, take the dinner I made last night; meatloaf, champ and broccoli cheese.  Each of these things take some spoons in their own right as they require me to use my arms to mix, and my arms are my area of greatest pain.  Meatloaf gets mixed by hand, champ needs the potatoes mashed, which I prefer to do by hand, and broccoli cheese requires about 5 minutes of constant stirring to get the cheese sauce nice and thick.

And I knew I didn’t have the spoons to do all of that.

So I compromised and mashed the potatoes in the food processor.  If you do this wrong they come out gloopy due to the starch being over processed, so its a bit fiddly.  But much easier on my spoon reserve.

I take pride in serving my family fresh homemade food at least 5, more likely 6, nights a week.  Which takes spoons.

So I use gadgets to help.

And the champ wasn’t gloopy at all.

And if Adam had eaten any more broccoli cheese, he would have turned green. 🙂

I Once Put As My Facebook Status

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“People without chronic pain illness cannot understand that a lessening of pain is as good as no pain at all.”

That holds true every day of my life.

I am in pain of some sort 24/7/365.  Whether my left hand aches from arthritis or my left leg hurts from ass to ankle with early degenerative disease or my upper arms protest from the simplest actions due to fibro, there is some kind of pain in my body.  Sometimes all of the above at the same time. Sometimes even more than that.

So when I wake up and its only one of those things? That’s an awesome day.

Today? Is pretty much an awesome day.  My left hand doesn’t hurt (although it is stiff).  My leg feels pretty good.  My arms are less sore than they have been lately.

The main reason for this is rest.  Simon is on holiday for two weeks, this week coming up being the second, and, as we try to do when he’s off, we’ve been each having 2 nights on, 2 nights off, getting up with Adam.  And not only have the last two nights been my nights off, but Adam has started to sleep better again.  So really, I’ve had 3 fairly decent nights sleep in a row.

And all it really takes is 2.  2 good nights and I start to feel better.  The problem has been the 3rd night.  But, with any luck, Adam will sleep well tonight and I’ll get 4 decent nights sleep in a row.

Man, imagine how good I might feel tomorrow!

Reflections on a Year

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Well…over 13 months.

Anyway, as Adam and I gear up for our next big adventure, him starting day nursery and me having free time away from him on a regular basis, I’ve started to reflect on the past year.

As this year has gone by there have been some truly horrible moments.  Moments when I’ve sat crying, Adam in my arms, exhausted, overwhelmed, aching with arthritis and fibro and depression, knowing Simon wouldn’t be home from work for hours.  Knowing that I couldn’t even call him and ask him to come home early because he told me about a big meeting or he’s teaching at a far away campus.  And wondering if I was the most selfish person in the world for having a baby with all my health issues, both mental and physical.

So I asked my sister, was I? Was I incredibly selfish to have Adam?

And she was, as always, brutally honest.  She said, you well know that I had reservations and worries when you got pregnant.  That your brother and I were both worried about your mental health and physical health issues.  And you know what? We worried for nothing.  You are a wonderful mother.  Adam is thriving.  Your company is taking off.  So, no.  You were not selfish to have Adam.  You wanted a baby and you had a wonderful one.

And I cried.  And I cry as I write this.  Because saying it out loud was hard enough.

Finding out I was wrong? Was even harder.

Because it showed me something I’ve never wanted to believe about myself.  I am just like everyone else in the world.  I have doubts.  I am, at times, hard on myself.

And I hate that.  I hate that I care what others think sometimes.  I hate that I question my ability to be Adam’s Mummy.

Because Adam is indeed thriving.  Not just because he’s 31 inches tall and weighs 28 pounds.  But because he’s starting to talk.  And walk.  And feed himself.  So he doesn’t talk English and he stumbles and the spoon is usually up side down?

He’s learning.

And so’s his mum.

I Felt Like Such A Bad Mother The Other Day

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Anyone who reads this blog for anything more than 2 seconds knows that I have quite a few health problems.  Fibromyalgia.  Type II diabetes.  Anxiety Disorder.  Borderline Agoraphobia.  Early Degenerative Disease.

And I do everything in my power to not let these  things affect the care of my son.  I had a horrible fibro flair a few months ago and I managed to take care of him.

And then came this past Wednesday morning.  When I woke up with a borderline migraine.

Now, other than a reaction to some stuff I took for my fibro right after diagnosis, I haven’t had a migraine in ages.  I never have any warning that I am going to get them.  They just show up.

So when Adam got me up about 530 Wednesday morning, I was hurting.  And nauseated.  And ready to steel myself to get through the day.  I certainly could not ask Simon to take the day off.  I would manage.

And then Simon got up for work.  And took one look at me and said ‘Do you want me to stay home?’

At first I said no, no way.  I can manage.  I have to manage.

But he kept asking.  And when it got to the point that I thought for sure I was going to have to puke I finally said ‘yes, please, stay home. I need to go back to bed.’  And I did.

And I felt like the worse mother ever.  Mother’s are suppose to muddle through, no matter what.  They are suppose to put everything to one side; pain, illness, sleep, to care for their children.  And I just couldn’t on Wednesday.

I know, if Simon hadn’t been able to stay home, or had been on one of his trips, I would have managed.  But I still felt horrible that I didn’t manage.  That I, in the end, leapt at the chance to stay in bed for the day and not have to manage.

I know I am lucky that Simon could do that.  And I am very thankful for it.

But, still, I felt like a bad mother.

Of course, most anything can make a person feel like a bad mother.  There is so much competition out there, so much ‘my baby does this’ and ‘how can you not do that’.

Well, I lay enough guilt on myself for the decisions I make, I have decided to not play the ‘my baby is better than yours’ game.  I refuse.

Although I am looking for a baby yoga or baby signing class, its part of the reason I am so reluctant to join a Mummy and Baby group.

That and the fact I’ll probably be about 20 years older than all of them.

Its Been A Tough Week

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Adam has not been sleeping well.  Staying up way past his bedtime and waking during the night.  I know it is jet lag and he will get passed it, but I am shattered.

Because I am so tired I’ve been having fibro flares.  So we’ve spent a few days playing inside when we probably would have normally taken a walk at least.

Today, for example, he spent about an hour playing on his pay mat. I put about 10 toys in there with him, including his Christmas ones, as the box I shipped from the States arrived today.  And what does he play with? The ribbon hanging off the arch that holds the toys! Babies!!

Another thing that I forgot to mention is that my sister found my baby blanket.  I remember giving it to her when her oldest daughter was born and saying ‘I’ll never want this back.’  I called her a few weeks before the trip and said ‘I want it back!’  She wasn’t sure where it was, but she found it and gave it to me when we were there.

My Nana, my dad’s mom, made me that blanket over 40 years ago now.  My mom remembers asking her to make it from cotton yarn, so she could wash it, but my Nana insisted on making it out of wool so it would last.  I had horrible eczema when I was a baby, so wool was bad, but the blanket looks as good as it did the day my Nana gave it to me.  Although Adam also has eczema, so he won’t really get to use it either.  Also, it has a huge girl on it!  At least its blue!  So it is living on the back of the rocking chair.  It may go on the bottom of his bed some day, but since it has a girl on it? Probably not!

I’m still happy to have it, though.

I’m dying to talk about what I am doing for my mom’s 70th birthday in March.  But she reads this.  So y’all will just have to wonder along with her.  I’m so mean…

The good news is Adam went down only about 45 minutes late tonight.  It has been getting closer and closer to his bedtime each night.  So hopefully he’ll go down on time tomorrow. And stay down.

Except tomorrow? We move him to his own room…

Yesterday I Woke Up With Very Few Spoons

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What that means.

It actually started at about 330am when either I was awoken by Adam needing me or I woke Adam because I moaned in pain in my sleep.  My upper arms and my thighs hurt with every move.  I was having the worst Fibro flare I’ve had since having my son.

Lucky for me Adam settled back down after about a half an hour of playing ‘find me my dummy mummy’ and slept until 630.  That extra 2.5 hours helped a lot.

When Simon woke up for work at 7 I told him how much pain I was in.  Well, he could see it, as I limped around the flat and groaned as I reached for the peanut butter for breakfast.  He offered to stay home but it was really important to me to be able to take care of my son no matter what.  So Simon did bits of help (the most important being getting a coffee cup down for me!) and then headed off to work.

Adam and I had no plans yesterday, although I was hoping to walk up to the park.  Instead we stayed home.  He spent a lot more time in his bouncy chair than he normally would, but other than that, it was a normal day.  Right up to and including his 230 ‘I’m exhausted but I don’t want to sleep’ crank which can only be soothed by walking him around and singing silly songs to him until he’s so tired he falls asleep.

By around lunchtime I was feeling somewhat better, although I still couldn’t lift my arms over my head.  And I was exhausted.  I did ring Simon at one point and ask if he could even come home an hour early, it would help, but if he couldn’t, I’d continue to manage.

And manage I did.  My son was fed, dry, warm and happy.  Maybe he didn’t get as many snuggles as usual, but he still got tummy time on Mummy and Daddy’s bed while Mummy got dressed.  Maybe Mummy didn’t spend as much time  bouncing him on her knee as she usual does (he loves that) but she did sit next to him while he was in his chair and talked to him and tickled him.

When I got pregnant my family’s major concern was how I would cope with my mental health issues.  Mentally, I’ve been fine.  Oh sure, I’ve had sad days, who doesn’t?  And I’ve had some major anxiety and panic attacks.  But none of these have affected taking care of my son.

And yesterday I proved my Fibro doesn’t either.

Letter To My Son – Adam – 4 Months Old

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Dear Adam

Today you are 4 months old.  I was hoping to say that you managed to stay out of A&E for this entire month but, alas, it is not to be.  You were there just after your second set of jabs to have your lump investigated.  You can read the whole story of that here.

This has been quite the month otherwise as well.  You’ve been laughing up a storm, really starting to sleep through the night and even thinking very hard about rolling over.  Your Daddy and I can just tell!

What we’ve learned this month:

  1. You love sitting up.  The bumbo is great for that: –

    2. SDC10553

  2. You have started drooling.  A lot.  But still no signs of teeth.
  3. If Mummy thinks you are too tired and doesn’t sing to you, you won’t go to sleep until she does.
  4. You hate wearing a hat. Even though you look so cute in one

    5. SDC10557

  5. You can take your dummy out of your mouth.  We are just waiting for you to be able to put it back in!
  6. The best toy in the world? Daddy’s fingers: –

    7. SDC10540

Winter is rapidly moving in here in Belfast, so mummy is getting ready to move you into a more sit up version of your pram.  You see, that version has a warm sleeping bag like thing that attaches to it, so you’ll be very snuggly warm this winter.  Also, you are definitely ready to be able to look around as we go about our day.

Mummy was recently diagnosed to fibromyalgia, so, once again, she has to ask for your patience.  She might not be able to be as active as you as you get older as some mummies can be, since she hurts quite a lot.

But she promises she will always be there to hold you, or pick you up, no matter what.

Love

Mummy

Diabetes…Anxiety Disorder…Borderline Agoraphobia…And Now…

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Some of you might remember that about 2 years ago now I started have trouble sleeping.  As in waking up for the day at 4am.  No matter what time I went to bed.

After a few months of various sleeping pills didn’t work, I was sent to the rheumatoid clinic.  I was tested for every known type of arthritis.  I had x-rays.  It was determined that I have early degenerative disease in my left knee and hip.

And then I got pregnant.  And any possible proof that I might have what they thought I had (fibromyalgia) went out the window as who can tell if you’re not sleeping and you hurt all over because of fibro or because of the big belly and kicking baby?  So we agreed to postpone diagnosis until after the baby was born.

Yesterday was that diagnosis appointment.  I have fibro.

So what makes today different from yesterday?  Today my aches, pains and exhaustion have a name beyond ‘you have a 4 month old son’.  The occasional weakness in my right hand has a cause.

Of course there is no cure for fibro. In the UK there isn’t even an approved drug for treatment.  In fact when I mentioned to the doctor I saw yesterday that my mom has fibro and she takes some sort of medicine for it, he actually rolled his eyes and said ‘there is no drug that treats fibro.’  I raised my eyebrows at him, but let it drop.

The treatment is what I already do; ibuprofen/paracetamol, gentle exercise and plenty of rest.  I can do all but the last. See aforementioned 4 month old son!

So I’ll keep popping ibuprofen at night and in the morning.  I’ll keep taking walks with the pram.  I’ll keep doing yoga.

And until the landlord finally gets the plumber here to sort it, I’ll keep yelling for Simon to turn on the cold tap in the kitchen on days my hands are too weak to manage it.

And avoid doing the washing up when he isn’t home…