feeling down and going round in circles

Hi I have a daughter 5 with mild cerebral palsy and a daughter 7 with severe asthma . Both of them in different ways are really suffering at the moment and it is really getting me down. Lauren who is 5 had a colostomy bag as a baby and then had it reversed. She is in her 2nd year at school as is still not yet dry during the day/night. Lauren is waiting for some more surgery but in the mean time wets up to 20 times a day and school are starting to get fed up of changing her . They are adamant that she is not to wear a pull up but are also reluctant to help her change and leave her wet to come home most days.we have had so much conflict at school lately that i am beginning to give up fighting for my kids and thats a bad thing for a mum to say. Chloe has severe asthma and is controlled with a sub -cut pump but we are still in and out of hospital like yo-yos . Chloe had another stay in ITU last week ,came home had 2 days at school and is now off with another chest infection so the head is getting at me about her attendance. Chloe don't seem to recover before another attack takes hold. Today I got the shock of my life one of my friends aged 33 has 2 girls aged 4 + 5 was diagnosed with leukemia last week . She passed away today her whole body was riddled with cancer. I can't get her poor girls out of my head . I'm sorry for the moan but i'm having a week of feeling really down and sorry for my self. I'm sick of the sight of hospitals and would do anything to have 2 healthy girls. They both go through so much. Sorry6 again for moaning . Take Care Nikki xxx

5 Replies

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  • Have pm'd you :)

  • Oh Nikki, I'm so sorry you're feeling down - it's not at all surprising with everything you've got to deal with, anyone would be feeling a bit overwhelmed. I'm so sorry both your girls are having a hard time, and that you've just lost your friend as well - what a horrible time for all of you.

    I'm not sure I have much to suggest in the way of practical help - I'm sure some of the others with kids will have better things to suggest re managing with the school and so on. The only thing I can think of is, do your children have Statements of Special Needs? I'm not sure if it's relevent with purely physical health problems as opposed to different educational needs, but I know from my mum (who's a teacher) that if kids are 'statemented' it often means that there are other resources that can be pulled in to help deal with their problems. Either way, it sounds like you might need to sit down with the school and draw up a formal plan of how to deal with their issues, if you haven't already.

    Do you have any local support or anyone you can talk to locally about the difficulties you are going through? I know that around here there is a very good group for parents/carers of children with disabilities - do you have anything similar locally? Do you have a babysitter you can trust, so that you can get away from the house occasionally for some 'me' time? Don't feel guilty about needing some time to yourself now and again, if you are less stressed the whole family will benefit so it's really for everyone!

    Lastly, if things are really getting on top of you and you are feeling persistently low and miserable, can you go and discuss it with your GP? If there is anyone sympathetic at your practice that you get on with, it might help to go and see them. I think when we are surrounded by physical illness, it's all too easy to forget that it's just as valid to go and see your GP if you are very stressed or distressed.

    I do hope none of this 'advice' is too intrusive. I really just wanted to say - hang in there, am thinking of you all.

    Take care

    Em

  • Oh Nikki, I'm so sorry you're feeling down - it's not at all surprising with everything you've got to deal with, anyone would be feeling a bit overwhelmed. I'm so sorry both your girls are having a hard time, and that you've just lost your friend as well - what a horrible time for all of you.

    I'm not sure I have much to suggest in the way of practical help - I'm sure some of the others with kids will have better things to suggest re managing with the school and so on. The only thing I can think of is, do your children have Statements of Special Needs? I'm not sure if it's relevent with purely physical health problems as opposed to different educational needs, but I know from my mum (who's a teacher) that if kids are 'statemented' it often means that there are other resources that can be pulled in to help deal with their problems. Either way, it sounds like you might need to sit down with the school and draw up a formal plan of how to deal with their issues, if you haven't already.

    Do you have any local support or anyone you can talk to locally about the difficulties you are going through? I know that around here there is a very good group for parents/carers of children with disabilities - do you have anything similar locally? Do you have a babysitter you can trust, so that you can get away from the house occasionally for some 'me' time? Don't feel guilty about needing some time to yourself now and again, if you are less stressed the whole family will benefit so it's really for everyone!

    Lastly, if things are really getting on top of you and you are feeling persistently low and miserable, can you go and discuss it with your GP? If there is anyone sympathetic at your practice that you get on with, it might help to go and see them. I think when we are surrounded by physical illness, it's all too easy to forget that it's just as valid to go and see your GP if you are very stressed or distressed.

    I do hope none of this 'advice' is too intrusive. I really just wanted to say - hang in there, am thinking of you all.

    Take care

    Em

  • Thanks everyone for pm's and replying on here . Feeling a bit more positive today both girls had clinic yesterday. The surgeon who done Laurens 2 previous operations has been in touch and he is going to see her again. So fingers crossed we'll make some progress. The school nurse was also in touch yesterday and has called a meeting with myself and the head to set up a care plan.Chloe is already on one and it makes things run so much smoother. Chloe is being admitted for 2 weeks tomorrow for iv antibiotics as she has a chest infection that is not going easily.She is also going to hospital school 3x a week all through the winter as she misses lots of school because of illness.Chloe is also having a bronchoscopy done whilst she is in there. They are going to have to work hard to convince her though because she hates the thought of theatre she has a massive fear of being put to sleep and not waking up again. ( thank god for play specialists ) Chloe has built a fantastic relationship with a couple of them at our hospital. We have RBH in a few weeks aswell so hopefully she will be a bit better than she is now . Offf the top of my head I think its 24th October so if anyones about then see you there . Thanks again . Hope you are well Nikki xx

  • Hi Nikki, Sorry to hear you having such a stressful time with the girls. Do you go to the tues/fri asthma/resp clinics at Rbh? We are there every 3-4 weeks at mo so our apts maybe at same time at end of mth. Let me know when you going and i'll check when Seans next apt is.

    Jx

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