Disability
Comments 3

When our strength fails us and we crash.

What happens when we fall apart ?

I noticed with me that life goes so fast but over the past 12 months things slowly were getting harder to manage.

My tiredness was much worse my eating habits up and down and mood swings around. I was so tired I couldn’t fall asleep and I found my head racing round hours after hours then suddenly I had fallen asleep and my alarm would wake me for next dose of meds for A.

I don’t even think adrenaline was even keeping me going. Seizures increased to daily over and over. It became so often it was the Norm.

Fear increased with this.

I tried to avoid the negative thoughts time after time but they were there sitting on my shoulder reminding me daily. It was like hearing a second voice.

Love is why and what keeps me going.

Last year was super challenging. Besides raising two sick kids and one declining so rapidly in front of me I’m also mum to teens. 19, 16 year olds.

Learning to drive. Learning to date and experience love. I’m struggling to be me yet be mum of all. It truly was hard and it finally crushed me.

I found myself withdrawing from friends I deleted numbers, deleted social media and would only occasionally text family.

I was in a bubble – how to you find a way out when you know your the strength of the family. The main carer the Rock!

I started to become physically sick and was having anxiety attacks out of no where and chest pains. I was hospitalised and had procedures and started heart meds.

Then a few months later and about 8 admissions to hospital I woke one morning and couldn’t stop crying. I was still doing all the meds cares cooking parenting for kids but I was broken inside. I’m not a crybaby ever and I was a mess.

Not once did I think I would escape this fear of losing A, with her up coming surgery. I felt I had failed her as a mother for being so afraid and letting her body fail her. I questioned myself in everything and every way. I actually thought I was losing my mind. Then I said to my partner to help me. I had never felt like this before. I decided to call a lifeline to speak to someone. Then I realised I had been on new medications the past few months and looked up the side effects.

Thank god an answer to this horrible time I was having. The medication was making me so depressed, dizzy , dropping my heart rate to 40bpm. It was making me vomit several times a day. Belly aches.

So I weaned. Yes I’m being very brief with this story of events. Each 24 hours I started to feel more and more like myself,

My point is anyone can fall. Even the strongest people. Yes I did count myself as pretty emotionally strong: and seeing me this vulnerable was a shock.

But I learned a lot to. I am a broken hearted mum – my pain runs through my veins and I truly didn’t know just how sad I am.

I don’t have any idea how to fix it as it’s not a fixable. How are you not meant to hurt when you have kids with life limiting illness and your a carer 24/7.

I have regular contact with Palative care but we need more help. Parents don’t want to admit how hard this is and how distressing it can be. High needs kids are so vulnerable and we only want the best for them. I still struggle the days she doesn’t wake up after having days full of seizures. Recovery takes time. But fear rules. Tough to put the feelings into words. I am sorry I am so sorry but I’m surviving and trying.

Thanks for reading

This entry was posted in: Disability

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I'm a mum of four who loves my kids but juggles some amazingly hard battles with disability and illness with two of my children. Sleep deprivation, time and being Homebound you will hear about many issues I face daily but mostly with a positive view. I just need somewhere to vent So thanks in advance if you even bother to read my mumble jumble

3 Comments

  1. Jenny Porceddu says

    Jo your blog made me cry. So much to deal with every day, you are truly amazing. You are strong but not invincible. Your body is letting you know that it is struggling, maybe it is a sign that you need more help from those around you. Please dont dismiss your symptoms as being only stress related. You ned a proper diagnosis from a qualified heart specialist. Please take care of yourself and try to let others around you help you, show them what needs to be done and allow them to share the load. You cant do all this alone. We love you so much and we feel your pain.

    Like

  2. Sue Bradbury says

    You are amazing Jo. Your kids are so fortunate to have you and Simon. Love you all xxx My Dad is dying from cancer right now, but I’m always here xxx

    Like

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