After sharing my health sorry so far and while I am awaiting diagnosis I am very honoured to be hosting blog posts from other bloggers about heath conditions they or their loved ones face everyday
Today on my Health Story Series is the lovely Sam who writes about family life with a pre teen on her wonderful site Stressed Mum. I am really honoured today that Sam is sharing her 12-year-old daughters story of living with ME/CFS.
You can also find Sam here:
Living With ME/CFS
My Daughter is 12 years old, she started Secondary school in September 2015 and had just started enjoying a little more freedom, she went to school and home again by bus, went out with her friends shopping and having fun.
On New Years Eve just before midnight (yes I can pin point the exact time), her life and ours changed forever. We were at a friend’s house having a little party, she had been sitting and chatting to the other children there and suddenly came over to me deathly white and saying she hurt, her head hurt, her legs hurt and she could barely stand. If I am honest I just thought she was tired or had a bug coming on.
Unfortunately, the ‘bug’ never disappeared, and she has remained the same even worse really.
Our second home was the Dr’s, where they kept saying it was a virus, she had numerous blood tests, and I have even rushed her to A&E when she has collapsed on me as she could not walk.
Eventually, she was diagnosed with ME/CFS it was a huge relief in a way, as we now knew fully what we were dealing with, but on the other hand it hit hard.
We found out that Glandular Fever was the trigger that brought out the ME/CFS in her, I think she caught this on holiday last year as she was very ill when she returned and was never 100% right after.
For those of you, like us we had heard of ME/CFS but had no idea really what it was, below is a list of some of the symptoms a sufferer with this chronic illness has
- Intolerance to exercise, joint pain, muscle pain
- Memory, concentration or attention problems
- Clumsiness, walking difficulties
- Sore throats, enlarged glands
- Temperature control problems
- Flu-like symptoms
- Sleep disturbance
- Bowel problems
- Emotional issues or mood swingsThe man symptoms that my Daughter suffers on a daily basis is
Fatigue – she is totally wiped out all the time and has no energy
Pain in her muscles and joints constantly
Memory, concentration and attention problems – she used to love reading, but can no longer read as she can not concentrate , her memory is all over the place and she has trouble with attention due to head pain.
Walking difficulties – she either can not walk, or is in pain when walking.
Headache – she is now on daily medication and finally has something that helps with the head pain
Sleep disturbance – she has disturbed sleep due to pain
Emotional issues, and mood swings – she is very up and down and it breaks my heart
There is also a fantastic video that I have shared all over the place which describes just what it is like to live with
Any activity no matter how little you think it is, will bring her into a massive crash and she will be bed ridden. We now have a wheelchair for her so when she does go out she doesn’t have to walk and have recently been awarded a mobility badge.
As a parent, it is a constant battle, there are still prejudice out there from medical professionals who do not believe that this is a real illness. So from having to deal with all the issues my Daughter faces on a daily basis, I am fighting for education, counselling (as she needs it after a recent CAHMS meeting), support, and medical help.
We have no idea what the future will hold for our Daughter, hopefully we are now closer to getting home tuition for her, so at least her education will not suffer. Socially it has been one of the hardest parts as she is missing so much, and you can see the pain in her eyes when at weekends and school holidays everyone is out doing something, and she can not anymore. We hope she will wake up one day and be going through the remission stage and be able to get her life back.
Thank you so much Sam for sharing your daughter story of living with ME/CFS and enlightening me and no doubt my readers too.
Why not pop over and see what else Sam is writing about over on her blog Stressed Mum.