I love you but mommy is tired- Parenting with Fibromyalgia & ME

I love you but mommy is tired- Parenting with Fibromyalgia & ME

 

It has only been about half a year since I was diagnosed with Fibromyalgia and ME, but the symptoms have been there for years.

I have kind of been neglecting my blog ( and the rest of my life ) due to lack of energy, pain and honestly being depressed because of my health problems.

Health is wealth

What is fibromyalgia & ME?

Fibromyalgia is a chronic illness which causes musculoskeletal pain amongst other symptoms.

For me it manifests itself with pain everywhere that moves to different places, brain fog, forgetfulness, feeling like my skin has giant bruises and burns (which it hasn’t), headaches & a general flu like feeling. Sore and stiff muscles are also a big part of it.

All of that sprinkled with a dash of extreme fatigue.

Fibromyalgia gets easily triggered by stress and lack of sleep/rest.

I’m a single mom so I have a lot of stress and absolutely no decent sleep. I’m screwed

 

ME is chronic fatigue. Which shortly said means you are exhausted.
Not tired, but exhausted to the point where taking the stairs is too much, where putting on clothes make you lose your breath.

Luckily my ME has gotten a bit better right now, although I still get tired really quickly.

 

I am so sorry Daya

Most days I just crawl out of bed, pain or no pain. But somedays it’s just too much.

Those are the days when I just can’t get out of bed.

 I literally can not get out of my bed.

To have those moments as a young person is hard. Hard to accept, hard to understand.

I cannot explain how disappointed I am in myself, in my body, when I have to spend the whole day in bed with my daughter.

On those days I feel like the biggest failure ever and I cry my eyes out.

Luckily she doesn’t mind too much to be snuggling with mommy in bed all day.

Party time

Whenever I am feeling good I make sure that it’s party time for Daya.

I’ll go all out and take her to the playground, go swimming or go for a walk..

I bust out the craziest dance moves because she loves dancing so much.

I don’t want her to miss out on things too much because I am not feeling well.

However I do have to pay for it the day after.

But life is worth living and I refuse to let pain and fatigue be the boss of me.

Chronic illness isolates you

I have lost ‘friends’ due to my illness. 

I have had to cancel a lot of times because I simply cannot know how I will feel at any given moment.

And some people don’t seem to understand that.

But that’s okay, you don’t need people like that in your life.

Chronic illnesses isolate you, you have friends leaving you and you have yourself working out your anger at those that are still left.

I’m sorry.

This is why there are so many people with chronic illnesses that are also depressed.

So please check on your friends, and understand that there is more than meets the eye.

Just because someone looks okay doesn’t mean they are okay.

Self image

It messes with your self image so much. 

During bad days I think that I’m not good enough of a mom because I get too tired and can’t do a lot, that I’m not good enough of a friend because I disappear when in pain.

That I don’t look good because I can’t fitness much, because I have bags under my eyes from the pain and fatigue.

It messes with your head when people don’t believe your pain is real, when people think you are faking.

So you start doubting yourself in every way.

Work

I got fired from my last job because I was sick too much.

They didn’t understand fibromyalgia and were sure I was faking it. Because after all I am way too young to be sick.

So I recently opened an online clothingstore so I can work from home. I hope it becomes succesful enough for me and Daya to live off! 

http://www.daydayfashion.be if anyone is interested ! 

I am also working on a book idea, I love to write, and I have some beautiful stories inside of me waiting to come out.

Finding a suitable job is hard, but let’s hope I have found it now ! 

 

Selfcare

It can’t be expressed enough how important selfcare is for everyone.

Although I struggle financially I still make sure I get a massage every +-6 weeks to re-energize.

I need it, it’s me-time and let’s me unwind for a little.

And if I get a hotstone massage it helps me relieve some pain ! Win-win!

But honestly self care doesn’t even need to cost anything ! Go for a walk, meditate, learn some yoga from YouTube, read a book..

Whatever makes you unwind and makes you happy: DO IT!

Selfcare also means proper nutrition, lots of water and vegetables. 

Accept & heal

To this day there is no known cure for fibromyalgia or ME.

You get prescribed pain killers, physical therapy and talk groups.

I am not a fan of pain killers, never been & never will be.
Before my daughter a certain plant medicine was my rescuing angel.

However since I still breastfeed that’s not a solution right now.

I noticed how my fibromyalgia gets extremely triggered by stress, lack of sleep and bad weather.
Being in a legal battle with Daya’s father has only made everything worse. It is stress that I do not need.

No matter how sad and defeated I feel at times, I still have hope.

I REFUSE to believe that it cannot be healed.

Being am a firm believer of how your thoughts and state of mind affect your whole life, I recommend anyone to read ‘you can heal your life’ from Louise L Hay.

I have read that book over 8 years ago to help with my Panic attacks back then. And I probably should read it again to refresh and retrain my thinking. 

I’ve fallen in the ‘pity pit’ for the last months, which doesn’t do anyone any good.

It made me go into a cycle of selfpity and feeling sorry for myself, only reinstating the fact that I feel shit so I will keep on feeling shit.

It’s hard to think positive when you feel like shit, but you need to make sure you don’t stay in that negative cycle.

So today, I will work on myself, on how I think and I will take proper care of my mind, my body & soul.

I would love to document this, and hope it might help me and anyone else suffering from this.

We might not all fully heal, but we sure will get better, together. 

For us & for our children, because we deserve a better life.


 

Do you have Fibromyalgia or ME ? What helps you?

-x Gitte

 

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