Why I Am Struggling

If you know me, see me out, talk to me you may not understand why I am writing a post about why I am struggling.  But today I am speaking out for myself and many other parents out there.

As many of you will already know, I have a child with a chronic illness.  This illness has robbed her of an important part of her life, she is 15 years old now and been ill since she was 12, so has never experienced the teenage years.

sad

Every day I get up and wait for C to wake up, as I know she will have had a bad night due to being in pain, when she wakes she will message me and she takes her first medication of the day.  I have to get her meals and drinks, sometimes help her to the bathroom.

I see on Facebook, or when talking to friends what their children are doing, laugh at the funny things they do, go through the worry when they are out and do not make contact or are late home.  Listen to them moaning about the latest drama, while I am screaming and crying inside wanting to join in and do the same.

I get you are so lucky, at least you know where C is, you don’t get the answering back and slamming out of the house.  I just say nothing where all I want to do is shout back telling them how my heart breaks everyday as my child is bedbound not being able to stand light or noise, sometimes not being able to walk, having no education, yes of course I am so lucky, but i don’t I just sit there and say nothing.

Although, she will not admit it I see the hurt, the loneliness in C’s eyes, as in her own words, all she wants to be is normal and go to school, go out with her friends and just have fun.

She has lost her teenage years, she has lost her education and although we have a very strong bond and relationship, there is only so much she can take of me and her Dad.

I know I am not alone as I hear this all the time from other parents going through the same.

If you know someone who is going through a similar thing, don’t forget them, we have lost a lot of friends as they don’t understand and just prefer to stay away than speak to us.

At the moment I am struggling probably more than usual, as C has just gone onto a new medication and we are dealing with the side effects so everything is mirrored.

If you know someone going through this, please just send them a text, give them a call or if you see them just ask how they are doing it really does mean a lot

I know I am not alone and it is not just us parents with a child with a chronic illness who has bad moments, Laura at dear bear and beany shares her week where she shares how the weather has reflected on her mood.

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28 Comments

  1. Melissa
    18th January 2019 / 7:20 pm

    Dealing with chronic illness is so hard. I started having symptoms of genetic dystonia at 16. My mom and four of my siblings have it. It can be quite difficult at times both for the one experiencing it and for their loved ones. You will be in my prayers

    • admin
      18th January 2019 / 7:37 pm

      Thank you, I have to be strong and cheery for my Daughter and it just carries over into real life as well, but inside it is breaking my heart and people just do not seem to realise and I do not want to be seen as just moaning all the time, so I hide it x

  2. 18th January 2019 / 10:27 pm

    I can’t even begin to imagine what you and your family are going through seeing your daughter dealing with a chronic illness. It must be really tough on you to feel like you need to put on a brave face x

    • admin
      19th January 2019 / 10:07 am

      It is normal for us now with that hope it will change, but it does get hard putting on the smiling I am ok face at times x

  3. Elizabeth O
    19th January 2019 / 10:49 am

    It can be quite difficult but you are strong. You are always in my prayers.

    • admin
      20th January 2019 / 10:31 am

      Thank you x

  4. Monidipa Dutta
    19th January 2019 / 5:22 pm

    Chronic illness truly is hard. But you know one thing more, C is lucky to have a person like you by her side. You give her strength.

    • admin
      20th January 2019 / 10:31 am

      Thank you x

  5. 19th January 2019 / 10:32 pm

    I cannot even begin to understand having a child with a chronic illness. I am sure you all do the best to live life to the fullest possible. I can completely understand why you would struggle, we all can only handle so much and sometimes we just need to recoup from it all. Hang in there.

    • admin
      20th January 2019 / 10:31 am

      Thank you most of the time I just get on and carry on but sometimes it just hits me x

  6. 20th January 2019 / 6:21 pm

    I have no idea how you cope with this, I also have chronic illness but that is my own personal burden and I can’t even begin to imagine how I would deal with this if it were my child. Much love.

    • admin
      20th January 2019 / 9:02 pm

      It is hard, and at times I have no idea either but I have an amazing friend who also knows C from before her illness who understands as she is going through it with her son and she really is my rock. A lot of the time I lock myself away and hide from everyone as I can’t face normality x

  7. 20th January 2019 / 8:41 pm

    I am so sorry to hear this. I know I had to deal with something similar for my daughter but nowhere near as long. It only lasted about six months. But it was hard watching my daughter suffer in pain and not know what to do about it.

    • admin
      20th January 2019 / 9:00 pm

      Thank you, that is the hardest thing not being able to take it away, our job as a parent is to keep them happy, safe and healthy and take away pain and or 4 years solid I have not been able to do this x

  8. Erin Haugerud
    20th January 2019 / 9:15 pm

    So sorry you are going through this!! Thank you so much for brining light to your pain!

    • admin
      21st January 2019 / 11:07 am

      Thank you x

  9. 21st January 2019 / 12:08 am

    I am so sorry to hear this. I can only imagine what you are all going though.

    • admin
      21st January 2019 / 11:06 am

      Thank you sometimes I just need to let it out x

  10. Aia
    21st January 2019 / 5:57 am

    im sorry to hear this. My mom maybe felt the same way when I was battling with cancer. Be strong mama.. I know it is easier said than done but I know you are her strength..

    • admin
      21st January 2019 / 11:06 am

      Your Mum probably did feel the same, it is how us Mums are x

  11. 21st January 2019 / 10:11 pm

    I’m probably a little guilty of this myself . When Friends who I maybe don’t see so much anymore I feel I can’t reach out and offer friendship , but that’s simply not true . If you care it’s so easy to show you care .

    • admin
      21st January 2019 / 10:20 pm

      I didn’t write this to cause guilt just to show we need to be asked as we are so good at hiding how we are truly feeling x

  12. 21st January 2019 / 11:09 pm

    I am so sorry to hear, but one thing is true, you are not alone. Do your best to stay positive, your displayed strength will help your daughter than you know.

    • admin
      22nd January 2019 / 10:22 am

      Thank you x

  13. 22nd January 2019 / 7:09 am

    All my respect to your inner heart article!
    Eva @ UrbanWheelz.co.uk

    • admin
      22nd January 2019 / 10:21 am

      Thank you x

  14. Jennifer Prince
    24th January 2019 / 2:05 am

    It is good to talk to others, though. It’s hard to hear that other parents are going through similar things, but it is comforting, too!

    • admin
      24th January 2019 / 10:26 am

      It is very bittersweet you want to know you are not alone but also do not want someone else going through it as well, but it does help to talk to people who truly understand x

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