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.