For those of you who do not know me, I am Sam and write my blog over at StressedMum, I have a 13 year old Daughter who has a chronic illness.
She became ill on New Years Eve 2015 when she was just 12 years old, at that moment I had no idea how much our lives would change.
During the early weeks we had no idea what our futures would be facing, I had a child who was so tired all the time, had problems with mobility and constant headaches, that she could only describe were like migraines 24/7 but was not a migraine (she has had these since she was little so knows what migraines feel like). We were living at our GP surgery and hospitals, while she was having blood test after blood test, MRI scans, when finally we were given the diagnosis of ME/CFS. If I am honest it was a relief to have a diagnosis, although it hurt, we finally knew what we were facing, but never knew how hard our journey was going to be.
My Daughter has always been lively and outgoing, she has a strong personality and wicked sense of humour, she was in the top classes at school, had a great group of friends and as she had recently started Secondary school in the September, she had just started to get some freedom. This horrible illness has stolen that from her.
For those of you who are unsure what ME/CFS is here is a link which explains more about the illness.
Unfortunately, this illness is not one that all medical professionals agree is a ‘proper’ illness, so apart from trying to care for your child and get them the help they need, we are also quite often having to fight and provide information to the professionals as well. I have found this with both Dr’s at our surgery and her consultant at the hospital, although we have been referred to another hospital and had our first appointment a few weeks ago, it was under a specialised unit with Drs who understand the illness. It was so refreshing to find someone who understood and listened, and then hit me with diagnosing her as having severe cfs.
On top of this she also has Temporomandibular joint disorder (TMD/TMJ for short) which you can read about here, unfortunately, as her referral was lost, she has got it very severe and I am now worried we are looking at surgery.
Having a child with a chronic illness, is one of the hardest things a parent has to go through, since January 2016 she has hardly been in school, and recently started home tutoring which we have now had to put on hold as she can not speak due to her jaw. She spends her days in bed and getting up if she feels strong enough, one thing I am thankful for is social media, as it is her life line and she can chat to her friends via this, taking breaks in between.
She used to love reading, but since her illness she can not concentrate on reading a whole page and gets brain fog.
I think the hardest part of this illness came when if she goes out, she has to use a wheelchair and we now have a disability badge, that did hurt. As do the looks people give her when she is out in her wheelchair, which they usually stop when they see the protective mum stare. Also the medication she has to take.
I am also finding school holidays very hard, as friends post about days out, and fun times and we have just been stuck in doors, and I can see her pain in her eyes when she sees this as well.
As a parent the emotions you go through is amazing, you are angry, heartbroken, positive, protective. As a parent your life changes as well, we have to be here 24/7 or rely on my wonderful Mum to be here if we are out, I have had to catch her if her legs fail, bath her, you become a carer full time and it is a very lonely place as well, it certainly shows you who your true friends are.
Luckily, I have found a wonderful page on Facebook, for parents of children suffering with ME/CFS and it has been my lifeline, the support and help you get on there is amazing, there is always someone who can sympathise, dry your tears, give you advice it has really helped. I have also made a new friend who lives close by, who has known my Daughter since she started school when she was 4, as she was a TA at her primary school.
I write weekly updates on my bog where I always write about how my Daughters week has been, plus do full posts. If you would like to know more, or can relate to this illness, please feel free to follow or get in touch.
Sam xx
You can find me at
Blog – StressedMum
Twitter – @stressedmum01
Facebook – @StressedMum01
Thank you for sharing your story. I absolutely understand your stress. My 15 yo was diagnosed autistic at the age of 8, missed two years of school, I homed schooled him. At 12 he developed shingles then at 14 glandular fever which became a very rare lymphoma that we are now in the middle of battling he hasn’t been in school since July 2016 and still hasn’t begun home tutor as he hasn’t been well enough.
We blog about his life at BellybuttonPanda.co.uk
I have followed you on twitter too as only other mum’s can really understand that are going through similar.
I have started my own lifestyle blog too now as a way of therapy.
I am so sorry you are having to struggle through your son being ill, I do find it helps writing it down, as it helps me from bottling it all up, but also helps others knowing they are not alone.
I am always available to chat if you need an ear x