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I Don’t Want to Feel Like That

Recently I’ve been called upon to make a big decision, to go to India for two weeks with my husband and not yet two year old baby.

I’ve been asked to explain myself. Told my reasons against going are invalid.PhotoGrid_1445107463651

But I don’t want to feel like that.

I don’t want to be in so much pain that I wonder why I haven’t collapsed, why I’m not in hospital, why no one realises how bad it is.

I don’t want to be so very alone and have no control and feel like that.

I have just pulled myself back from that after pregnancy and the birth of my son. I crawled my way through, existing, waiting for it to get better. For sleep to come, for pain to reduce. And it has just recently become more like a life, not a struggle.

After several awfully unwell years in my early to mid twenties, slogging my way through progressing symptoms, feeling worse and worse, I pulled myself out. But it took two years of working 3/4 time, doing little else, working my way up to tolerating 30 minutes of walking and being able to reduce physio appointments from weekly to three weekly. I can’t go back to feeling like that.

I know in my soul that going on a long plane journey, to a hot, dirty, noisy place where there will be many social expectations and food that will upset my sensitive stomach – right after having people staying in my house for a few weeks and going to the social obligations of a wedding at home – won’t work. Going to a place like that with people who ignore or don’t understand Fibromyalgia is not a good idea.

I don’t want to feel like that, vulnerable, alone, sick, scared and unable to look after my baby.

My baby is my first priority. He doesn’t sit still for more than one word per page books, he needs to run and climb and wriggle. He doesn’t yet understand. When his routine gets upset and he goes to sleep late, he wakes early and has a miserable day after.

I’ve said when he’s 3 we could go, it would still be hard, but by then he’ll have less of a baby routine, he’ll understand and hopefully he’ll sit through a movie!

Just because I have Fibromyalgia, doesn’t mean I should have to feel so miserable, I don’t have to feel so bad that I wish I were not alive, I don’t have to feel like that. That’s what all my experiments have been about.

It’s not acceptable to have to feel like that. And I shouldn’t be forced to be. People in my life should be happy I don’t have to feel like that. And that I know how to avoid it.

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Food, Body Image and Fibromyalgia

There are some serious struggles involved with having a chronic illness, especially one that heavily impacts your energy levels.

I have struggled with body issues for forever (don’t most women?). Before I was struck by the chronic fatigue syndrome in in my last year of university, I exercised a lot. I walked everywhere and I went to the gym. Sometimes I walked to the gym (20 mins each way).

Before I left my full time job I was forcing myself to walk as much as possible and do one Pilates class each week. But my legs, glutes and lower back were ALWAYS tight and sore.

When I changed my lifestyle, I allowed myself to find the balance between enough exercise but not so much that it hurt. I walked 20-30 minutes each day and did a 20-30 minute Pilates or yoga routine three times a week. But I was less rigid on “bad” days.

Due to my body type and my previous levels of exercise I have very muscular legs. So when my pregnancy forced me to slow down (a very slow 20 minute walk by my last day) my legs became less defined.

As I progress further from pregnancy and my baby sleeps a bit better, I am able to pick it up a little. I have been able to do more walking and exploring which I love to do. I love finding a new walkway or beach and I love sharing this with my boy and husband. Numerous family adventures include walking in new places.

With the tremendously low levels of energy and high levels of pain that I have experienced since I had my boy, I have come to look at food more as fuel. I am more relaxed about it. My husband loves that I am not super finicky about food (as I’d have to be to maintain a tiny figure). Though, he does love the idea of my having a flat tummy!

I have a better understanding of food and exercise for fuel and survival, rather than aesthetic reasons. But I still struggle with my body image and that is a work in progress. I am learning to be thankful for what my body can do. That it carries me through each day, even if some of those days are slower than others and all of them are slower than most people’s. Having chronic pain means that I am more aware of my body and all of the work it does to keep me alive. And for this, I am thankful.

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Dear Future Daddies

Dear Future Daddies

Congratulations! This is going to be such a soul-stretching, exciting time in your life. Your relationship will be tested and strengthened. You’ll learn more about yourself in these months than your whole life combined.

I have a request for you. Please, please, please be your partner’s champion.

Support her in her pregnancy. You’ll never know the pain and energy drain that pregnancy is. But try to be compassionate. 

Be her rock in the delivery. She will be in the worst pain imaginable. You need to be the safety in her storm. There will be decisions to make and there may be people you need to remove from the room. Do your homework, solidify your partner’s wishes beforehand and try to help her stick to them (unless it’s her who wants to change!).

In the first few weeks at home with your precious, potentially persistently crying bundle, be your wife’s superhero. She is recovering from delivery, she is learning to feed, she is beyond exhausted and there will be a deluge of well-meaning advice.

Be the guard dog. Limit visitors. Avoid them in the first two weeks if you can. And limit their time while they’re there. Watch your partner. If she seems tired or like she just wants to deal with the baby without prying eyes, send them off.

Be her advocate. No matter how you choose to feed your baby, advocate for her. Support this. Yes, breast milk is best. But there are many options and it is a two person relationship – mama and baby are equally important here.

If breast feeding doesn’t work or your wife hates it or your baby doesn’t take to it – whatever reason, then you support the formula route too.

It is your job to protect her from the people that would give their two cents worth. Choose your people to listen to and help your wife say, “we’re following the advice of…(gp, midwife, plunket nurse, mother etc)”

Your attitude and your support will be vital for your new mama. If she must fight you too, it will be the hardest time in the world for her. She won’t enjoy it. She won’t feel loved. She’ll feel alone. There will be some fluctuating hormones, this is the time to support her and honour her feelings. If she cries, hold her. If she feels bombarded, fix it. If she feels happy, celebrate with her.

Of course, you’re important too. I’m just offering the perspective of a new mama with fibromyalgia. What I wished for myself and didn’t always get. 

Good luck!