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Living with ME 4 Years On

Living with ME 4 Years On

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.

The start

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.

More checks

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.

 

Living with ME 4 Years On

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Comments (20)

  • Gervin Khan 8 months ago Reply

    I am so sorry to hear what happened to your daughter C. I know how hard for a parents to know your child is sick and the most painful thing only waiting for the results of her treatment. I am hoping for her fast recovery and hope for her to be healthy.

    admin 8 months ago Reply

    Thank you, it has been a very hard 4 years x

  • sabrina barbante 8 months ago Reply

    I can’t help thinking how lucky your daughter C. is (I know, it might sound weird but I really mean it) to have you at her side. Having such an aware mother, can only make her a stronger woman. Take care

    admin 8 months ago Reply

    You have made me cry (not in a bad way) thank you so much as quite often I feel like a failure as a Mum

  • Laura Dove 8 months ago Reply

    Sorry to hear this. I have lived with ME for the last 15 years, alongside other chronic illnesses, and I wouldn;t wish it on my worst enemy let alone a child. Much love.

    admin 8 months ago Reply

    I am so sorry you understand how this feels x

  • Monidipa Dutta 8 months ago Reply

    Your daughter is lucky, you are there by her side. I do not have parents. 🙂 Your girl will be fine sweetheart. Just be there, mostly emotionally.

    admin 8 months ago Reply

    Thank you, I try to be a good Mum x

  • Konstantina 8 months ago Reply

    I am really sorry to hear that. I wish you the best for you and your family. Indeed there are some amazing support groups out there that offer so much help and support.

    admin 7 months ago Reply

    Thank you, I am just taking it one day at a time at the moment with her and her new meds

  • Kemi 8 months ago Reply

    I am so, so, so sorry to hear about C and I pray that both her and you will find the required help, treatment, care, succour and all good things that you need. May you both be blessed.

    admin 7 months ago Reply

    Thank you x

  • Daydreams of a Mum 7 months ago Reply

    The illness itself is bad enough , bit having to go through all you have just to.get decent medical care for her is awful. There’s no wonder it would impact on mental health too. Thank goodness she has you fighting her corner

    admin 7 months ago Reply

    Sadly I am not alone in the constant fighting, I see and hear it multiple times every day. It is so unfair they are ill and we as parents suddenly have to become medical experts and educate the professionals and fight for everything. It is like they are being punished for being ill x

  • Growingclan 7 months ago Reply

    I’m so sorry to hear about your lovely daughter C, your a strong wonderful mumma to be by her side every step x

    admin 7 months ago Reply

    Thank you, I dont always feel it x

  • Blair villanueva 7 months ago Reply

    You are a tough Mom and full of unconditional love. Stay strong because your C needs you, and dont feel weak because people around you are your bigger protector.

    admin 7 months ago Reply

    Thank you I am a very protective Mum

  • Becky Willoughby 7 months ago Reply

    I can’t imagine what it’s been like for you. Hope things can take a turn for the better

    admin 7 months ago Reply

    Thank you, its not easy but that is mainly the lack of professional care available and having to fight every step of the way x

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