Blogtober 2018 – Day 23 – Wishlist For The Future

Today is day 23 of Blogtober 2018, and we are talking about our wishlist for the future.  Apart from all the usual things we all wish for there is one that I really want.

As regular followers will know, my Daughter C suffers with a chronic illness, she has ME, Fibromyalgia and just recently been diagnosed with Papiledema, basically this is where she has increased fluid around her brain pressing on her optic nerve and causing 24/7 type migraine pain.

She has suffered with these 24/7 migraines, and nothing was helping her, until we went for her opticians appointment and they picked up something was not right, you can read about it here.

Her headaches have come back, and we spent 7 hours at hospital last week, where she underwent another lumbar puncture, as the pressure had built back up, new medication and a referral to a neurologist.

We have since spent the past few days since the hospital visit, watching her either sleeping where the medication has totally knocked her out, or be totally not with it when awake, in pain in her shoulder blades and a headache that is killing her (her words) and is worse than the migraine when she sits up or walks about, I have even had to wake her for her meals.

We have made the decision to stop the medication, as she was worse than she was before taking them, and currently trying to get a message to her Consultant to seek her advise.

So for me, my wish list for the future, is my Daughter to get better.  She became ill at 12 years old, she turns 15 in two weeks time.  She has missed out on her teenage years, she has missed out on school, and lost all her friends, due to her being so ill and bedbound.

I want to find a cure, or medication that will let her live a normal life, where she can socialise again and be a normal teen.

#Blogtober18

 

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29 Comments

    • 23rd October 2018 / 12:27 pm

      Thank you, so do we x

  1. 23rd October 2018 / 3:25 pm

    I am so sorry your daughter is suffering like this, I do hope they can do something for her soon x
    #blogtober18

    • 23rd October 2018 / 6:32 pm

      Thank you, I really hope so too, I do try to be hopeful and upbeat but it does get to me at times and I feel so sad for her x

  2. 23rd October 2018 / 7:15 pm

    Aww! Bless her. Your poor girl. I hope someone can help her soon and she feels better x

    • 23rd October 2018 / 7:19 pm

      Thank you, so do we x

  3. 24th October 2018 / 9:41 pm

    Oh my, now that’s a powerful wish for the future. I really hope they manage to sort something for her soon x

    • 25th October 2018 / 9:42 am

      Thank you I hope so too x

  4. 25th October 2018 / 4:32 pm

    I really hope your daughter does get better, it must be so difficult for you all.

    • 25th October 2018 / 9:22 pm

      Thank you, it is heartbreaking and so stressful x

  5. 25th October 2018 / 5:21 pm

    It must be awfully worrying for your daughter to be so ill. I hope the consultant finds something that can help her, sending all my love to her.

    • 25th October 2018 / 9:21 pm

      Thank you, I think she just wants to feel ill rather than be worrying, she leaves that to us, but then she knows I am like a dog with a bone and will not give up x

  6. 26th October 2018 / 11:19 am

    I can’t believe that’s she’s going through so much, hope she finds a way of managing everything.

    • 29th October 2018 / 10:50 am

      Thank you, always seems a step forward and three back all the time, hopefully we are now on the right track to get her head pains under control x

  7. 26th October 2018 / 3:04 pm

    I also have ME and fibromyalgia, and several other chronic illnesses so I can relate to this. I just wish there was a cure. Lots of love,

    • 29th October 2018 / 10:49 am

      Sorry that you suffer too, I wish there was a cure as well, she has a condition which is affecting her head which is showing as migraines, we feel that once this has been treated and under control, she should be able to cope better with the ME and Fibro and start to live her life a bit more x

  8. 27th October 2018 / 3:28 pm

    Bless her. I hope you find a solution. I’ve never had to deal with anything remotely close to this but often I hear about people being more sad about missing out on their lifes due to medication so maybe this is the best solution for you all currently x

    • 29th October 2018 / 10:46 am

      She has missed out on 3 years of her life, missed education, lost her friends heartbreaking for a child of that age. Currently bedbound again and waiting on a new referal

    • 28th October 2018 / 12:52 pm

      Thank you it is hard but hopefully not too long x

    • 29th October 2018 / 10:44 am

      It is hard, probably more so when it is your child, thank you hopefully will not be too long to wait x

  9. 27th October 2018 / 7:40 pm

    Oh lovely – I do hope your wish comes true – I had no idea about C’s migraines – how awful and scary for you both. Lots of love, Kaz x

    • 28th October 2018 / 12:52 pm

      Thank you, she has had them as long as her ME and Fibro 24/7, it is to do with excess fluid building up around her brain and pressing on her optic nerve. We now just have to sit tight and wait for a referal to a neurologist to come through x

    • 29th October 2018 / 10:44 am

      So do I, she has suffered 24/7 migraines for 3 years since being ill, and only just found out that this is the cause. Now waiting for further treatment

  10. 27th October 2018 / 9:23 pm

    Im so sorry to read this, such a heartbreaking read. I really hope you find a solution soon and at the very least manage to get hold of her consultant. Sending much love xx

    • 28th October 2018 / 12:50 pm

      Thank you, we have to live with it at the moment which is hard as she is in pain if she sits up or stands :(, waiting on a referal to a neurologist at the moment, where hopefully they can start to help her x

    • 29th October 2018 / 10:43 am

      Thank you, we have spoken to her Consultant, nothing we can do now as we are waiting to hear from a referal to aother hospital at the moment x

  11. 3rd November 2018 / 8:15 pm

    I’m super sorry to read this and that your daughter suffers as such, I suffer retinal migraines myself where the optic nerves seizure restricting the blood flow, causes the worse nose bleeds! I hope a medication that gives her a better quality of life can be developed soon.

    • 5th November 2018 / 11:07 am

      That sounds awful, luckily we have no nose bleeds but it is constant she is currently dealing with constant pressure at the top of her head and dizzyness, hopefully beginning of next year she will have the correct treatment to prevent this. Thank youx

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