As you will know my Daughter C has a chronic illness. At 11.45pm on 31st December this marked her 4 year anniversary of living with this chronic illness.
How it all began
For those who have only recently started to follow C was 11 years old when she became ill. She had been away with my parents and returned home with what we thought was a virus. Looking back now she never recovered from this and later on we learnt that she had in fact had Glandular Fever, a common trigger. She started Secondary school in the September and settled in well. Was doing well in class, made new friends along with her old friends. She started to enjoy that bit of freedom of going out with her friends shopping etc. She started to go to and from school on her own by bus. Some days she would text me to pick her up after school as she was just too tired. We still never thought anything of it.
School broke up for the Christmas break, and she was tired. But we just thought it was getting used to Secondary school. Until New Years Eve, I can pin point it and can remember it vividly. We were at friends for a small party, C was with the other kids. When at 11.45 she looked awful and said her legs hurt and her head really hurt. I saw the new year in sat on the settee cuddling her and rubbing her legs, she never recovered.
It has been a very long, stressful and hard journey, you can read our journey and updates here. Last year has to be one of the worst years so far. The lovely Consultant we were under, retired and we were put back under GP care. Who are pretty useless as they do not understand ME and Fibromyalgia or that children can get this illness. I ended up begging them to find us a new Consultant and also a councillor. As the illness has taken a toll on C’s mental state and she is very down.
And still there is more
In August we went for a routine opticians appointment. The Optician (who I am forever grateful too) requested us to go to eye casualty urgently with C. It turns out she has another condition and excess fluid around her brain. Which was pressing on her optic nerve and left untreated would have had serious consequences. This led us to being put under a new Consultant, who is amazing and working on one thing at a time to get C better. She had a Lumbar puncture which was traumatic for both of us as it took 4 attempts, another aborted one after another 4 attempts, and then another Lumbar Puncture.
We are now under regular checks with they Eye Unit to keep an eye on the fluid build up, which so far is ok, we were also referred to a Neurologist, who agreed 4 years of migraine type headaches 24/7 is enough and looked C in the eye and told her it will be sorted.
We saw him mid December, I have spent since then trying to get hold of the letter, in order to get our GP to write the prescription. I finally got hold of the new medication yesterday after a lot of tears and arguing and refusing to wait any longer, knowing our GP now had a copy of the letter.
I will of course keep you updated on how this medication is working.
For those of you starting your journey with a chronic illness, I am always available, there are some amazing groups out there, and other amazing parents who are a mind of information and support.