ME Awareness Day 2017

ME Awareness Day 2017

May is ME Awareness month, and today is ME Awareness week. Where we highlight and share about this awful chronic illness, that affects thousands of people young and old.

I wrote an awareness post last week, which you can read here, and I will be writing the next awareness post over the weekend.

I am going to write about our story and explain just how much this illness has affect all our lives.

My Daughter was 12 years old when she became ill with this horrible illness. She had gone away on holiday with my parents on a Cruise (something my parents did with her every year).  When She came home and was really ill with what we thought was a virus.  She recovered and started her first year in Secondary school.  She loved it, she settled in very well, had a lovely circle of friends and had started to enjoy a little bit of freedom. From going to school and back on her own by bus, and out shopping in town with her friends.

Sadly, and looking back now, she never really recovered from returning home from holiday with her illness. She was not 100%. She would ring me or text me to ask me to pick her up after school as she felt unwell, or was too tired. We just put it down to her age, and settling in to her new school.  She also got lectured about bedtime. We have always been strict on school nights and we just thought she was chatting to friends after lights out.

The big crash

However, at 11.45 on 31st December 2015, our lives changed forever. We were at our friends house enjoying a little party to celebrate new year. When C came over to me looking awful, said her legs hurt and were shaky and she did not feel well.  I got her to sit on the settee and thought she was just tired.  She never recovered.

The next few months were just horrible, constant trips to the Dr, and hospital for blood tests, even trips to A&E when her legs gave way.  Eventually she was diagnosed with ME/CFS. She had caught it from having Glandular Fever which is what she came home from her holiday with.

School

School were amazing, I have to say I am one of the lucky parents. A few have had such bad experiences with their childs school.  C’s school have been very supportive. We have tried various things to get her into school, but she could not cope with lessons. One of her (many) things she suffers with is 24/7 migraine type pain, and concentration. Eventually after many meetings, it was agreed that she would have 1-1 tuition in school 1 hour a day, 3 days a week. Her tutor, is lovely, C got on great with her.

Although she did not understand the illness fully, she did understand C and her needs. She would pick up if she was struggling.  This worked great until January this year, when C went into a major crash. She could not cope with going into school. Eventually we arranged home tuition but sadly she just had one lesson and has been too ill since.  She has since been diagnosed as having severe ME.

Unfortunately, she also has a couple of other conditions, which I believe is also down to the ME. One is a jaw problem which is causing her constant pain, and me constant frustration as she can not eat properly.

A typical day in our house goes like this

  • Wake Up – see if C is awake (leave her if not as depends on what her night has been like).  Once she is awake we have a little chat and see how she is. Then the task of what she can eat for breakfast.  Usually is soft fruit, maybe yoghurt, banana smoothie or jelly (yes she has had jelly for breakfast)
  • Morning – depending on her jaw and how she is feeling. I will sit in with her or leave her alone and just pop in to see if she wants or needs anything.
  • Lunch – Another long list of questions as to what she can manage to eat, lately it is ice cream
  • Afternoon – pretty much the same as the morning
  • Dinner – this has to be my most stressful time. She has hardly eaten all day and trying to find something she can eat for dinner is a nightmare.  Most nights she will try something but will end up with soft fruit.

Daily living

She also needs someone at home 24/7 as she is very wobbly with her walking. She needs a wheelchair when we go out, but sadly these days she just goes out for hospital appointments, and this takes it out on her.

This is just a very small glimpse of how this awful illness has affected our lives, I often say to C, if I could swap places and have the illness instead, I would in a heartbeat, so she could live her life.

I hope our story has given you a little more understanding on how this illness affects the life of a sufferer.

 

 

 

 

 

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Comments (38)

  • Sarah Bailey 2 years ago Reply

    Thank you for sharing this – it is so important to get out how real ME is and how it does change lives. Sending you both big hugs.

    admin 2 years ago Reply

    Thank you, I hope it does help people understand the illness a little bit more x

  • Louise 2 years ago Reply

    I’m so glad I read this, Samantha. I didn’t know much about ME at all, but now I feel I understand it a little better. And I hope other people do too. Sending you both big hugs.

    Louise x

    admin 2 years ago Reply

    Thank you, I am glad it has helped x

  • Elizabeth 2 years ago Reply

    Thank you so much for sharing that. It’s so important to share our stories.

    admin 2 years ago Reply

    Thank you x

  • stephanie 2 years ago Reply

    What a lovely and honest post, it’s definitely help me understand the illness more x

    admin 2 years ago Reply

    Thank you, I am glad it helped x

  • hannah 2 years ago Reply

    I think it’s good that there is an awareness week about ME. Must be really awful to have this

    admin 2 years ago Reply

    It is a very horrible illness, and one that affects 1000’s of lives, but one that little is known about x

  • Ali Rost 2 years ago Reply

    I can’t even imagine how difficult this is for not only your daughter, but your entire family. Isn’t it amazing who quickly life can take a turn? Thank-you for sharing your story, I’m sure it will help other families who are in the same situation x

    admin 2 years ago Reply

    It is very hard but it is daily life now, I can not remember what a normal day is like now, and helping raise awareness is something that sadly needs to be shared x

  • Anosa 2 years ago Reply

    I truly can not even begin to imagine what it must be like for both C and you. Thanks for sharing your story and making some of us aware of ME

    admin 2 years ago Reply

    Thank you, it is hard some times are harder than others, I am happy to share our story to raise awareness x

  • Whitney Abigail 2 years ago Reply

    I had no idea what ME was. Thanks for raising awareness. Seems like a difficult illness but your family must be so strong x

    admin 2 years ago Reply

    It is a horrible illness, I am glad I have raised a bit more awareness x

  • The London Mum 2 years ago Reply

    I just cannot imagine how your daughter must feel, or how you as a family deal with such a chronic debilitating illness. You’re all so strong and brave.

    admin 2 years ago Reply

    C is amazing, yes she has her times where she just sits and cries her eyes out in my arms, but we try to laugh our way through things, we try not to look at the downsides and try to lighten it all up, it helps C. I hide my heartbreak from her apart from saying to her if I could make a wish and have the illness myself I would in a heartbeat x

  • Helen 2 years ago Reply

    I’ve followed Cs story for a while on your blog. My heart really goes out to you all. It’s great you are raising so much awareness of ME, I didn’t know much about it until I read your posts.

    admin 2 years ago Reply

    Thank you, I didn’t know much about it until she became ill, and now I could talk for hours on it, if I can raise just a bit of awareness it is all positive and will hopefully let people understand just what this illness is like x

  • Baby Isabella 2 years ago Reply

    My heart goes out to you 🙁 it is absolutely life changing and we never realised the impact it could have on a family. One of my mummy’s old school friends suffered from ME and we never really understood why she was tired all the time. Now we know, thanks for sharing your story.

    admin 2 years ago Reply

    Thank you, I am glad it has given you a little more understanding it is such a horrible illness x

  • Rhian Westbury 2 years ago Reply

    Thank you for sharing this, this is such a horrible illness and you are such a strong person x

    admin 2 years ago Reply

    Thank you, I am not strong I do have down times, when I just sit and cry feeling heartbroken x

  • Hayley Warren 2 years ago Reply

    You don’t really hear a lot about ME so it’s good that people are trying to raise awareness as I know it can be absolutely awful.

    admin 2 years ago Reply

    There is not a lot about ME, like many illnesses, so awareness days and months are a great opportunity to raise awareness x

  • Joanna 2 years ago Reply

    I didn’t know anything about this disease before I read your blog and then Googled the condition. Oh, how awful it must be for your daughter…. such a young soul having to carry such a hard disease. You are both brave for fighting with it!

    admin 2 years ago Reply

    Thank you, it a horrible illness, sadly there are so many young children suffering, the youngest I know of is 4 years old 🙁

  • Steph 2 years ago Reply

    I’ve read a few of your posts about your daughter over the last few months and can begin to imagine what your life is like. Even this small insight makes me feel for you..keep being strong x

    admin 2 years ago Reply

    Thank you, it is one of the hardest things I have faced as a parent,our job is to keep them well and make them better x

  • MELANIE EDJOURIAN 2 years ago Reply

    It must be a struggle to cope each day with this and she must feel awful about not being able to do what others her age can. All you can do as a parent is give her the support she needs.

    admin 2 years ago Reply

    It is a struggle and some days I just want to close my eyes and wake up again and everything will be ok, that is the hardest part her life has been taken away, luckily we are incredibly close and I do try to get a smile out of her everyday even on her worst days, when I sometimes just get that look she gives x

  • Tanya Brannan 2 years ago Reply

    I have been reading your posts about C for sometime, however I had no clue as to how her condition started, so I read this almost as a “prequel” to the other posts I have already read.
    However, I didn’t expect this post to make me as upset as it did. My heart breaks for C and the pain and suffering she is going through, and ultimately the stress and pressure it puts on a whole family,
    I am sure I don’t need to tell you that a girl her age deserves to be running around with her girl friends, having fun and teenage adventures and it must be difficult for you all that she is so limited by this hideous condition!!
    I keep everything crossed that either they come up with a treatment plan that gives C her life back, or it’s a condition she could eventually outgrow? Either way I am sending you my best wishes xxx

    admin 2 years ago Reply

    Thank you, it is such a horrible illness and every day is the same at the moment, just this morning I kept going into check on her and she was asleep (typical as I had hoovering to do and obviously could not do it haha), and when she did finally wake up she just looked awful. It breaks my heart daily, and I often feel that I have to justify to others why she is so bad x

  • Francesca 2 years ago Reply

    Oh goodness this sounds like one heck of a trialling time for you all!! I really wish you all the best! Thanks for sharing something so personal its given me auch an insight!

    admin 2 years ago Reply

    Thank you, it is hard but sadly it becomes a way of life, we have forgotten what life was like before she became so ill, in time I really hope we can get back to that though x

  • Mel 2 years ago Reply

    Oh my goodness, it sounds like C s having such a tough time living with ME. Thanks for sharing her story as I am sure it will help many.

    admin 2 years ago Reply

    Thank you, she is having a tough time, and this is the side that is usually not talked about, and the response has been great and I know it has helped a few people x

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