A Tricky Parenting Secret

Do you want to know a tricky wee parenting secret? After three years of being a mama with a chronic illness, it’s just dawned on me…A Tricky Parenting Secret

It doesn’t take as much as you think to make a nice day for your kids.

Take a day recently as an example, I’m exhausted and my pain levels have been creeping up thanks to the baby waking up to six times a night. We went to church (with a baby and a three year old, it’s not so peaceful anymore) got frustrated with Nu not being quiet. We’re not crazy, we know he can’t sit quietly for just over an hour. But not yelling would be great.

Back at home, he was frustrating us, we were feeling cabin fever but also the weight of the incomplete housework (sorry our bathroom gets cleaned fortnightly now eek). Baby wasn’t playing ball with the napping. I was so tired I felt sick.

But we decided to go out. I wanted to be tired and sore out, instead of tired and sore at home. So we bundled into the car, drove half an hour, of which the baby slept 25 minutes (he’s a chronic catnapper) and visited a nice beach with a park. Parking was difficult, we got a 30 minute park, unbundled and faced the cold but beautiful scene. Nu happily rode his scooter up and down the beach, baby watched. On the way home we stopped for chocolate sundaes at a special chocolate cafe.

Nu was difficult to keep occupied as we waited for our order. He was loud on the drive home.

But at the end of the day, as I remembered how frustrating it was to wrangle Nu and the overtired baby and my own issues. While admitting I had a nice time. Nu remembered a great day. He had fun. He remembered the scooter, the birds, the swing, the chocolate sundaes. And our photos look so great.

All it took was a park and a treat. And I managed to give that to him (granted, with Husband’s help) despite pain levels of 5/10 and fatigue levels up the whop.

It is a timely reminder as I worry about my lack of energy and time. As I worry that I don’t have enough to split between two kids. But I do. I continually find reserves I didn’t know I had, for their sakes. And my little efforts to keep Nu occupied pay off.

On days where we’re housebound by baby and pain levels, Nu is just as happy to bake (he loves to stir!) and colour, an ride his digger (as long as I’m watching!) and snuggle while watching a movie.

So now my definition of a successful day is when I ask Nu, “did you have a nice day?” And he responds with an emphatic yes!

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Nu loved his chocolate sundae!

Knee Flare Up – What I Did

The last few weeks have been difficult but illuminating.

I went to the pain clinic and did some physical testing that left me with a knee flare up.

I dealt with it fairly well, but it was hard. I couldn’t walk due to the severe pain. The not walking caused my back to flare up too. The extra pain caused extra fatigue.

But I did what I do best, I coped. On the first few days I rested and took medicine as the pain was rather severe. I used the space the pain relievers bought me to do my leg strengthening exercise (essentially leg lifts focusing on engagement in my thigh – my physio gave me this specifically for the knee pain). I also used an ice pack on it as I couldn’t bear the thought of heat on it.

After a few days I went to the pool. I walked across the pool in hip/chest height water holding my son (I had no childcare, plus he loves the water!). We managed 10 times across and then soaked in the family spa. It was bliss. We have done this three times in the past two weeks.

As my knees calmed down I slowly increased the amount of incidental walking I did during the day. When that brought less pain, I walked to the shops and back (20 minutes with a break in the middle).

Eventually that led to me resuming our usual 20-30 minute walks.

Now I am still sleeping with a pillow under my legs and stretching my legs like a maniac, but my knees are better and my back is under better control.

In a nut shell here’s how I dealt with the knee flare up:

  • Rest
  • Ice pack
  • Pain relief
  • Stretching and gentle strengthening
  • Walking in the pool (any exercise tolerable!)
  • Soak in the spa
  • Gently resuming old activity level as pain stabilised

Interestingly, my physio doesn’t think the knee pain is just Fibro. This means I need to get it checked out to ensure it’s not actually causing damage. Exercise will almost certainly keep it in check, but once it’s sore, if it is causing damage, I may need another plan to deal with it. I will keep you posted about that!

A Brief Note on Fighting Flare Ups

It can be handy to have an unreliable memory. I forget just how bad it can get when I have a flare up.

This morning, I woke up after a night of extremely restless sleep (after a string of similar nights) with very tight muscles in my neck and upper back, the pressure wrenching my trigger points tighter. I felt on the verge of vomiting all morning.

But instead of getting lost in the pain, today I was able to put small coping mechanisms into place.

I thought I would share them just in case others fall into a quiet panic when they flare up too.

The first thing I did was take appropriate medicine. Unfortunately I did force myself to go to work because I had an important workshop. When I found that it had been cancelled I took the opportunity to go home. It was a good call.

The second thing I did was lie down with my heat pack with my legs up on the couch in half legs on the chair pose.

After that I went to bed and did a 20 minute Yoga Nidra meditation sequence. Then I felt ready to quietly continue my day, still in a lot of pain but able to cope.

I’m so grateful that I have these mechanisms in place, so that I know what to do when I get so sore that I could fall down and not get up.

Opportunities to give up when you have Fibromyalgia come often, but with them opportunities to fight arise also.

This Week 22.02.2015

So much happens all the time, so I thought I’d provide a little roundup of the week.

I have been working on my experiments, following the windy threads that people throw out to ideas of things that could potentially help. This week I found this website which was founded by Dr. Bill Rawls and promotes his treatment plan. In addition to this, it provides some useful information and has suggested some new herbs/supplements to try in my next tiny mission. COQ10 has been reinforced from a few different sources, including in Chronic Fatigue Syndrome: What You Need to Know About CFS/ME by Dr. Megan A. Arroll.

I’ve been reading, more like devouring books, I’m in a non fiction mood and have rea

Superpowers for parentsd the above book, and begun:

Superpowers for Parents: The Psychology of Great Parenting and Happy Children  by Dr. Stephen Briars

The Way of Serenity: Finding Peace and Happiness in the Serenity Prayer  by Father Jonathan Morris

I’ve been racing around after my boy as he grows increasingly mobile and unable to tolerate sitting nicely in one spot. That’s been tiring!

In addition to work my few hours that I am contracted for, I have had a job interview for a more stable position of 24 hours per week. I am fretting because I know that it will mean an increase in neck pain (my neck responds extremely negatively to sitting at the computer, well, I am yet to find what it responds positively to!). I am hoping that this amount of hours will be a nice fit for our situation.

We set up our Nintendo Wii and played Grand Slam Tennis for the first time. Here are the key stats: 30 minutes of playing, burning approximately three calories per three minutes, one very sore finger from a meeting of the hands when both my husband and I went for the swing (mine not his) and 30 minutes to entice myself to get up again after I lay down on the couch at the conclusion of this! The next day, I felt muscles that I haven’t used for a while, so it wasn’t all bad!

We have begun the Lenten season, which means a significant increase in the amount of events I must attend for my Catholic conversion programme. That’s an evening a week and a Sunday morning mass commitment (me and my baby ready for 9.30am mass? Hard!) for the period.

My fatigue flared up for two bad days and clung up near 7/10 for most of the week, making the evenings with the baby almost impossible. But we have made it, seven days done!

A Letter to Midwives

I remember it vividly. Sitting in a low, grey chair, behind a curtain with a double breast pump at work, tears streaming down my face. I started crying that morning and couldn’t stop.

It was three days after a hard pregnancy and delivery, and I’d had very little sleep.

The midwife said my fibromyalgia must be pretty bad.

I didn’t say anything at the time, but I can’t stop thinking about it.

I want to tell her that it’s not.

I usually cope very well. But she saw me on one of the worst days of my life. After a pregnancy of increasing pain and decreasing sleep. After a hard labour. After three days of very little sleep, with a baby who couldn’t get enough food from me. Hideous pain in my breasts and in my stitches. To top it off my husband wasn’t allowed to stay. So I was alone with this baby from 9pm to 9am.

The midwives on the nightshift didn’t help very much. They latched baby on and left. They didn’t see the pain caused by his latch becoming shallower as he drank. If I took him off to try to re latch, he’d refuse it.

On that last day the best things happened. And only because I couldn’t stop crying.

They taught me to express milk for my baby to drink via the bottle. This meant I was able to see that my baby had enough food, that I could bother my very sore breasts only three-hourly and that I had an element of control.

This enabled me to give my baby breastmilk for eight weeks, instead of just that first week.

We need options. I was committed to feeding my baby, but I needed the option to help me do that. I am so thankful for this, so thankful that they were not judgemental. Cos damn, breastfeeding hurt me!

They also let my husband stay on the final night.

He is why I managed. We took turns feeding, so I got some sleep. I also had a person to experience it all with me. Alone, in pain, with a screaming baby is not a key for coping.

What I want to tell all midwives is that my fibromyalgia isn’t so bad. But there are people who have it worse.

Please educate yourselves so that you can help. Even if you know enough to know that the husband or a support person needs to stay to help.

A person with fibromyalgia is likely to have a higher perception of the pain.
They are more likely to have had a very painful pregnancy.
They are more prone to emotional changes – when you’re in a lot of pain and so tired you can’t think straight, you can’t keep your emotions on an even keel.

So please know this. Please be aware. We need a little extra help.

Delivered

We were blessed with our beautiful baby boy on 19 April, born after 37 weeks and 3 days.
I awoke with a shock at midnight on Good Friday with severe back pain and contractions. To cut a 19 hour story short, the extreme back pain lasted the entire labour, the epidural failed, he was the wrong way round and had his head in an awkward position. He was born weighing a healthy 7 pd 7oz.

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Unfortunately he had a problem with wind from the beginning, which degenerated into severe vomiting by his 18th day. On his third week anniversary he was admitted into hospital for tests that eventually revealed he had pyloric stenosis. An operation to trim the muscle in his stomach that had gotten too thick (a problem for about 3 in 1000 babies, predominantly in first born boys) enabled food to pass from the stomach to the intestines again.

At last, just before his fourth week begins, we can take him home and effectively meet him and learn all about him again. He’s like a new baby.

I am so in love with this little being!

My pain and fatigue levels were doing rather well up until our second hospital stay. With the stress of my precious baby being sick and sleepless nights ensuring he didn’t choke on his vomit, a flare up has ensued. But, thank God for my husband! He has done most of the night shifts at the hospital so I can sleep and express breast milk for baby. I never could have survived if not for him. He has been AMAZING!

The combination of my husband’s help, choosing to express and then feed via the bottle and my mother-in-law cooking our meals has enabled me to survive and enjoy my baby. I am so thankful, so blessed, so happy.