Living With ME 5 Years On

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.

You may also like

34 comments

    1. 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

      1. 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

  1. 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

  2. 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.

    1. 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

  3. 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!

    1. 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

  4. 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

    1. 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 🙁

  5. 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.

    1. 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

  6. 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.

    1. 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.

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

  7. 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

    1. 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

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.