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Living With ME 5 Years On

Living With ME 5 Years On (1)

At 11.45pm on 31st December it was the 5 year anniversary of C’s illness.  The moment when all our lives changed and she no longer was able to lead a normal life.  But that of a child with a chronic illness suffering daily.

Each year I write a post marking the anniversary, not as a reminder but also for those who are following our journey, or just facing life with this illness.  You can find last years post here.

The Beginning

We now know why, but at the time we had no idea what we were facing.  We were at a friend’s house having a New Years Eve party.  C came over to me said she did not feel too well and her legs hurt, and then she collapsed in my arms.  Luckily she was near a sofa where I managed to move her too and sit with her.

We did not know then, just what we were about to face.

The battles

At the start of this, we had heard of ME, but had no real idea what it was and how it affected sufferers.  One thing I do know is that everyone suffers differently.

I have been very lucky with her school, who have worked with us and not against us.  The sad part is that since her illness began she has barely been in school and has been bedbound for most of it.

The medical profession her Dr’s are a different story, the battles we have had, being told to go to A&E and sitting for over 7 hours before being sent home, the times they have had to google her illness as they had no idea what it was.  The times I have been told she is putting it on as children do not get this illness.  The list is endless I could go on and on.

This year we have started seeing a consultant privately, now she is 16 we are able to see him.  Who we are lucky is in our area, as I know people travels from all over the country to see him.  We have seen him before but this was before he gave up NHS to do more research into ME.

A Special Birthday

This year C celebrated her 16th birthday, but sadly as she has not been in school, she has lost contact with friends.  So there was no party, no going out with friends like a normal well 16-year-old should do.

We wanted to do something special for her, to make it a happy memory and not see the sadness in her eyes that it is just a normal day and just how alone she is.

We decided to take her on a mini cruise, this way she could rest up as much as she wanted.  It was a total surprise and her face said it all.  She loved the cruise (and our first time away as a family since her illness), which is what we have al missed.

Looking Up

Things have been going a little better, C has been managing tuition 3 x 1 hour sessions a week at home, before moving into school.  It was lovely seeing her start to get a bit of routine going.  When another crash came.

With this she has developed bad stomach pains, we initially thought it was her appendix but after seeing a Dr was told no, but then this same Dr wanted to see her jump (this is the child who shakily walked into the surgery), after me explaining about her ME. She told me she would arrange an ultra sound scan for her, which we are still waiting on.  I rang chasing and was told it would be at least 6 weeks before we heard anything, so I rang our surgery again and another request was put in escalating it.

We ended up at out or hours the Sunday before christmas as she was in so much pain.  This time told it could be kidney stone and see what the scan says

I will of course keep you updated on what happens.

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 5 Years On (1)

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Comments (34)

  • Kim Carberry 3 months ago Reply

    Oh no! So sorry things are not good for C with the stomach pains. Good luck with the scan. At least if it is kidney stones it is treatable. I hope she feels better soon x

    admin 3 months ago Reply

    Thank you, I finally got to talk to the department today apparently she had an appointment on 31st December which we had no idea about, so got another one for next week x

    Janet Yarwood 3 months ago Reply

    You’re both so brave and strong. I hope the scan goes well and gives you some answers. I’m glad C still managed to have a good 16th – a mini cruise sounds lovely!

    admin 3 months ago

    Thank you had the scan that was ok, but now having to fight to get an urgent MRI scan as been advised she now needs one. There is always something

  • What Mum Loves 3 months ago Reply

    Thank you for having the courage to share this blog post. I can not even imagine how you must have felt when the A&E doctors had to google your daughter’s illness because they didn’t know what it was. You’re very strong.
    Good luck with the scan <3

    admin 3 months ago Reply

    I think my face said it all, my Daughter gave me a look as to say Mum please don;t, which of course I had to say something x

  • MissPond 3 months ago Reply

    Sorry to hear she is unwell at the moment. I was diagnosed with rheumatoid arthritis at 18, it was a real shock. I hope things improve for her soon x

    admin 3 months ago Reply

    Thank you we are 5 years in and no further forward x

  • Rebecca Smith 3 months ago Reply

    She is so incredibly brave, as are you – dealing with this illness as you have for the past five years. She is so lucky to have you, every step of the way x

    admin 3 months ago Reply

    You would do exactly the same, its not easy but you just have to get on and fight every step of the way x

    Mujeeb Alimrany 3 months ago Reply

    Oh sorry! I can feel the pain of her. It really touch me most especially when no party is arranged due to contact lost with friends. Good luck with the scan

    admin 3 months ago

    Thank you that is the most heartbreaking the loss of friends not that you can blame them x

  • I am sorry to hear that things are not going well for C at the moment. I hope the scan sheds some light on it. It sounds like your family have been through enough. The mini cruise sounded like the perfect way to celebrate turning 16 as a family. 🙂 I hope C feels better soon.

    admin 3 months ago Reply

    Thank you, finally have a date now for scan so fingers crossed x

  • Viano Dee 3 months ago Reply

    I’m so sorry about all you’ve had to go through. Hang in there. I pray everything gets better soonest.

    admin 3 months ago Reply

    Thank you, always look for positives so hopefully one day things will improve x

  • michelle twin mum 3 months ago Reply

    Gosh, how difficult this is for you al to deal with, having to keep battling to find out what is going on. I’m glad C got her mini cruise to enjoy to mark her birthday. Mich x

    admin 3 months ago Reply

    Sadly it is a common thing, everyone I speak to has to battle, in some ways I have it easy compared to what others go through. But it was lovely seeing her celebrate and enjoy her birthday for the first time in 4 years

  • Maysz 3 months ago Reply

    This post makes me feel sad but a lot of encouragement. This is difficult for you but you’re brave to share this to inspire us so proud of you and always keep going wishing you all the best and happy new year!

    admin 3 months ago Reply

    Thank you, I share as others have followed this from the beginning, plus it helps those starting out on this journey that thet are not alone x

  • Katie Desborough 3 months ago Reply

    Oh Sam, I am so sorry to read about some of the ignorance you have experienced. And am even sadder still than it is unsurprising; far too common with more complex health issues to have to deal with this. It is also sad how friends have lost contact too, the mini cruise sounds like a lovely celebration though. I hope she gets the scan soon, that they get to the bottom of it quickly and are able to easily treat it. Katie x

    admin 3 months ago Reply

    Thank you, the hardest thing is the ignorance of the medical profession, when we had her at out of hours before Christmas the Dr said he knew little about ME and had been recently reading up on it and was such a relief that he knew what we were talking about. But it is far too common. I had a battle with the hospital the other day and she has an appointment next week so hopefully we can find out what it is as it is drawing her down into another crash 🙁

  • Di 3 months ago Reply

    I feel your pain. I too live with an invisible illness. 2019 was my roughest year to date, but I’m determined to make 2020 better!

    admin 3 months ago Reply

    So sorry you live with an invisible illness and had such a rough year, hopefully this year will be a better one for you x

  • Marjie Mare 3 months ago Reply

    I am glad you were able to take her to a cruise for her birthday. This is a great reminder not to take everything for granted.

    admin 3 months ago Reply

    She loved it and meant she could do things at her own pace, and it is a great reminder not to take everything for granted, it can change right before your eyes at anytime x

  • Karla 3 months ago Reply

    I also want to experience going on a cruise for my birthday! I’m praying for you and your family. Happy New Year!

    admin 3 months ago Reply

    The cruise was amazing, we all had a great time, and it meant C could rest as needed x

  • Michael 3 months ago Reply

    You sharing this is so brave. Thanks for letting us know more about this illness as to we can help others who also have it. God bless and praying for an even healthier 2020.

    admin 3 months ago Reply

    Thank you, and awareness does need to be raised about this illness x

    Elizabeth O 3 months ago Reply

    Living with a chronic condition is incredibly hard and takes enormous patience and compassion to handle. I commend you and C for pressing on. My heart goes out to both of you. Stay strong.

    admin 3 months ago

    Thank you, the hardest part is people believing about the illness there is so much negativity around chronic illness still x

  • Kara Guppy 3 months ago Reply

    I am so sorry she has had another relapse, I really do feel for her as the teens are the years she really needs friends around her. Sounds like the mini-cruise was perfect though

    admin 3 months ago Reply

    It is heartbreaking, but she has a few online friends she talks to which helps, the cruise was amazing and we all benefited from family time x

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