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Parenting with a chronic illness

 


My 2017 didn't get off to the best start, I was diagnosed with ME/CFS and osteoarthritis- which is in addition to my hypermobility syndrome (which I was diagnosed with in 2011)

I'd been feeling pretty rough for a while, and was gradually getting worse - my old doctors failed to diagnose me despite several visits to them over the course of a year and a half. My new doctors, after a few tests were able to diagnose me in three months.

On a good day I can just be a little tired and feel a bit achy - on a bad day I can be exhausted and feel like I've been hit by a bus.

Unfortunately pain killers don't work, they don't even take the edge off. Some days the pain is so bad I cry, I cry because it hurts and I cry because I'm frustrated with my own body, and I can't just stay in my bed because I have two little little boys who rely on me.

My hubby is a long distance lorry driver and he works away Monday to Friday, and we have one car so I take him to work on a Sunday night and collect him on a Friday night (each trip is a 50 mile round trip).

So through the week it's just me and my two boys.

On a bad day it's hard to be the life and the soul of the party for my two little boys who don't understand when mummy is having a bad day.  My eldest has now started to pick up on when I'm having a rough day, and he'll say 'I'll give you a hug mummy, and that will make you feel better'.

It's hard to explain to anyone that you're having a bad day.

 

A close friend, who also has a chronic illness told me about the spoon theory.  

Most days I run pretty low on spoons, and some days I run out.

 

The exhaustion isn't just being a bit sleepy, it's being completely drained and exhausted, and wanting to just collapse and sleep, but then when I get into bed I can't sleep because of the pain.

Something as simple as a day out with the family or doing some housework can take me days or even weeks to recover.

I'm now using pacing to manage my symptoms - my day consists of periods of activities and periods of rest in order for me to try and manage my symptoms.

Easier said than done with two toddlers!

Some days I do feel sorry for myself, generally on the really shit days - but then I have to remind myself that there are people who are going through far worse shit than me and they're just cracking on with it.

To the parents out there dealing with shit and staying strong - you're amazing.



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Comments

  1. Have you tried Gabapentin? It is not an analgesic it blocks the pain message getting to the brain. Therefore you don't get the tiredness you get with analgesics .I used to fall asleep marking books, children often had a pen mark slide across their work.
    I think gabapentin are brilliant, pain seeps through if I over do it but on the whole my life improved a hundred fold when I started taking them.
    Might be worth asking your Dr.
    Remember we are always here if you need us. Spare beds if you need a break whilst Alan away. Nigel would love to take boys to seaside every day. Charlie isnt in primary yet is he.?
    X x x x Denise

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    Replies
    1. I haven't tried it - I have just been referred to the hospital by my GP as I keep having episodes of passing out, it calmed down a bit now thankfully, but he just wants to get me checked to make sure they aren't missing anything, so when I see the specialist I will ask about the gabapentin.
      Thanks so much, its nice to know that you are there if we need you, hope you are both well xxxx

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