Living With A Chronic Illness A Year On

ME/CFS Awareness Week

As regular readers will know, C got ill on 31st December 2015, and was finally diagnosed with ME/CFS last year, you will have seen my weekly updates filling you in, mainly about how she had been that week, so I thought I would do a full post, on how it has been, the struggles and how she really is coping with her illness and how it affects us all as a family.

C before her illness struck

This time last year, C was ill and in pain, and we seemed to be living at the Dr’s and hospital having various blood tests, she struggled with school and could not cope with full days, or weeks.  I have to say school were great I never had any of the problems a lot of parents have faced, about attendance or threats of further action.

When C was finally diagnosed, we had meetings with school, to try to get her in but work at her pace, but she could not cope with it, she was obviously so fatigued plus continuous migraine type headaches meant she could not stand loud noise or crowds, and brain fog as she could not concentrate, and then there was the pains in her body, the amount of times we would have to support her or catch her if her legs did not work, we called these times her bambi days.

In July, we had a huge meeting at school with various people, and a 1-2-1 tutor was put in place, and it was agreed that C would go into school for one hour a day, 3 times a week.  I felt her going into school and in uniform would give her a bit more of a boost and make her feel a bit more ‘normal’.  Her tutor is amazing, she really gets C and now she has worked with her for a while she can tell by her face if she needs a break or if she can carry on, and she has been blown away by her art and has got to see her full character come out, C gets on great with her as well.

a-little-trip-out
A Little Trip Out

It has been such a tough and emotional year for us all, but being a parent it is heartbreaking, your once happy carefree child, is gone she needs me all the time, she is in constant pain, and every day is a battle for her.  We had to cancel our holiday last year, as she just was not well enough and we had about 2-3 little trips out for no more than an hour.  She speaks to a few friends online, but has not seen her best friend since November, this is the part I find the hardest. If she does go out now it is in a wheelchair and we also have a disability badge for her.

The huge battles we have faced with the medical profession as well, has been awful, I have literally had one battle after another, you get through one brick wall to find 2 more waiting.  C now refuses to see her consultant, and I can not blame her after our last visit in November (and yes I am still seething over it), we went in to see him due to how much pain she was in with her legs and head, and also following up a Dr and Dentist appointment regarding her jaw, where he said in front of a 13 year old, about her weight, and a scan on her jaw will give her brain damage.  I somehow managed to stay calm for C, and had so much repair work to do after we left.  She has always been a skinny girl, but obviously with medication and lack of activity she has put on weight, but is not huge.  I think she is ok now.

She has got another condition now with her jaw called TMD, it is basically something that should get better, it is where her jaw bone clicks and locks and goes out of place, which is great fun with her eating.

At the moment, we are in a bit of limbo land she is in so much pain and her legs are getting worse, her head pain is getting worse and her jaw quite frankly makes me feel sick, when I hear it grind or click, but we laugh about it, as we have through all of this.  We are waiting to go and see a consultant in London next month, who deals with ME/CFS and we are hoping things will slowly start to improve from then.  We just have to struggle through at the moment best we can and take each day as it comes.

She has not managed a full week at school for a long time, last week she managed a proper lesson with a class, but it wiped her out, she managed to go into school on Tuesday but could barely walk through the door and she did her lesson in reception.

It is breaking my heart, and it is tough and although I do not want to be I am very jealous of people living normal lives, as ours has changed totally, we can’t just have days out or pop out on our shopping trips and I see it in her eyes as well.

I am on a fantastic group on Facebook, for parents of children with ME/CFS, and the support on there is amazing and has really helped so much, even just knowing you are not alone, and I have a great friend who lives local who has known C since she was 4 as she was a teacher at her school, her son has it and she has been amazing.

I know this is long and I am sorry, I just had to get it out and also show you all how she really is, but I know my posts have been found by other parents feeling alone and struggling, and wanted to let them know I am here to help, support or talk to.

 

Thank you for visiting x

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24 thoughts on “Living With A Chronic Illness A Year On

  1. It must be heartbreaking seeing your daughter like this, especially as it only came about last year. It’s good that school have been so understanding though x

    1. admin

      It is heartbreaking and I hate it, if I could swap with her I would in a heartbeat x

  2. I can’t even imagine what you’ve been through. I am really wishing that 2017 proves to be a much better year and things will slowly improve day by day! Glad you’ve found the facebook group, sometimes knowing you’re not alone is the best thing to keep the spirits up!

    1. admin

      The facebook group has been amazing, it really has made such a difference as this illness is such a lonely one, am hoping once spring is here and the weather starts to improve that C will start to improve as well x

  3. I hope the consultant in London is a lot better then the one you have now and your daughter will be spoken to in a professional manner xx

    1. admin

      I am hoping so too, it was so hard for me to keep my cool and not tell him exactly what I thought, as it would have upset C even more, she sat there with her head hidden into me and refused to look or speak to him again, which I can not blame her, and she has refused to see him again, which I really do not blame her or want her too. I need her to have someone who will at least support and try to help her x

  4. I can’t imagine how difficult this year has been for you watching your daughter go through this and having to deal with all of the repercussions her illness has caused in your family. I think it is completely normal to be jealous of other families that are living “normal” lives that don’t have to deal with something like this. I can only hope that C will improve and that life will get better for you.

    1. admin

      It has been hard, and I have really struggled at times, it is so hard to see memories of how she was and see what friends children are doing, and then seeing C suffering so much, hopefully it will improve and she will get some normality back in her life x

  5. hannah

    This must be difficult to see your own kid like this. Hopefully she will get better. That support group on Facebook does sound like a very good idea x

    1. admin

      It is heartbreaking, especially how quick her life has changed, the support group is amazing and it does help with making it not seem so lonely and being able to talk to people who do know exactly what we are going through x

  6. I will not even pretend to know how you feel but I can imagine – what a brave young girl and mom and together you will overcome any obstacle put in your way wishing you both much love and happiness on your journey together

    1. admin

      Thank you, it is a hard and emotional journey but I will be there for her every step of the way x

  7. Kristina Maggiora

    wow I can’t even imagine what it’s been like. You’re very brave and helpful for posting this as many people will take comfort into knowing they’re not alone. I hope this year will be a good one for you and your family xxxx

    1. admin

      Thank you, it has been very hard, but more so for having to fight for everything, but we will get there eventually, it is nice to be in a position where I can share and offer help to others x

  8. I am so sorry to hear about how much pain she has been in and the impact it has had on her wellbeing. That consultant sounds like a dick, excuse my language how dare he say that to her x

    1. admin

      Thank you she has been suffering a lot, I called the consultant a lot worse, was not impressed at all x

  9. Sounds like a tough year, it’s good that shes got a great 121 tutor and that she did manage a less x

    1. admin

      It has been tough but we have learnt a lot, it is such a relief that her tutor is great with her and C gets on really well with her

  10. Don’t ever apologise when recounting what has been happening and sorry to hear about the november meet with her consultant. C is lucky to have you and the support from her teacher and school sounds like a God sent

    1. admin

      Thank you, her last consultant appointment was a nightmare, we have been very lucky with her tutor and school x

  11. Sorry to hear about this, not a nice thing at all, wishing you both the best

    1. admin

      Thank you, it is hard but hopefully we will get there x

  12. You seem to have such a positive attitude which am sure will help your daughter immensely! It is horrible to hear a consultant commenting on any kid’s weight and at an age you’re most self-conscious and vulnerable. I think even saying that to an adult is out of order! x

    1. admin

      I think my look told him he was out of order, fuming was not the word, but had to keep calm for C, she will not be seeing him again x

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