It seems ages since I last wrote about living with ME, and the impact it has on family life, not just for the sufferer but also family.
In July we saw an amazing new Consultant who actually understands ME, those of you who do know someone who suffers or you ar the sufferer will understand just how amazing this is. We are also lucky that we are in this Consultants area and did not have to travel far to see him. I do know people from all over the country who travel to see him. He was like a breath of fresh air, he actually talked to C and listened to her. His final diagnosis for her was Severe ME, Fibromyalgia, Joint Hypermobility and TMD (her jaw complaint). Her medication was altered and we were given a huge sheet of supplements to try.
It has been a tough few months for us all, we have gone through the summer holidays with no holidays or fun days out, she has lost contact with her school friends. Her 14th birthday arrived and we tried to make it special for her, she wanted to help me make her cake and we had planned to take her shopping to spend her birthday money and then out for a special dinner. The day arrived and she was suffering badly, we did not make her cake and ended up with a takeaway at home. We made the cake the next day and still have the promise of our little outing and meal out when she feels up to it.
I have to watch daily as my once lively happy Daughter lays in bed too exhausted to get up, missing out on her teenage years of going out with friends, missing her education as she has been too ill to have her home tuition lessons. Seeing friends teenagers doing all these things, hearing them get frustrated when they argue back, or bend the rules, wishing I could moan about the same thing.
Tuesday night C broke down, I have never seen her break her heart so much she sobbed her little heart out and she let out all her upset and anger. I sat there holding her and calming her down and we talked. She feels dumb doing tuition, not because she is dumb she was always in the top classes for subjects and is like a sponge for obtaining information, she just feels that because she is not doing normal lessons in class she is not good enough. She is also very lonely as she has not seen her friends in such a long time, apart from a few times in the summer holidays. As a parent there is only so much she can put up with me and needs to be with people her own age. She speaks to friends online but it is not the same thing.
Yesterday morning, I sat and wrote an email to her school, tutor and head of Learning at our local council, all who are incredibly supportive and will work with her at her pace. We have also arranged for her to see the school councillor to have a chat with and help her integrate back into school and with her friends.
One thing that people on the outside do not see is the pain both physical and emotional that comes along with an illness. Some people think it is just laziness that the sufferer does not get up or sleeps so long, others feel jealous and joke you are so lucky I wish I could do that. And although not said in any malice it hurts.
As a parent of a teenager (or nearly teen when she became ill) I was starting to get used to not having to run around after C all the time, to start sitting back a bit and letting her find herself and start to enjoy the little bit of freedom. We now have to be here for her 24/7 or have someone here with her, as she could collapse when her legs go at any time, sometimes we have warning and know it could happen, other times we just hear a thud as she has fallen. Going out now is always in a wheelchair, one thing I find hard is the looks people give, and this is where my protective mummy bear side comes out and I look back, I can not help it. I am a friendly person will chat and smile with anyone, but upset or potentially upset my child and I let it known I am not impressed.
Is there a cure for this illness, No there is not, will she ever recover, that is something time will tell. We have to take one day at a time, and cherish the better days, and make sure we do not do too much, as it can cause a crash. She could go into remission and become well and never have a symptom again, or she could have days, weeks, months or years where she is well and then crash again.
If you know someone who suffers with an illness please remember them, even if it is a quick text to say hello, my friend text me last night to see how we were as she had not heard anything for a while, I apologised for not being in contact but I as a carer have shut myself off, I do have chances to go out but this is with my husband or my husband and our friends. I shut myself off from everyone else, because although I am thankful they do not have to live as we do, it hurts and I am jealous and it just highlights just how much C is missing. This is my problem and one I will come to accept or learn to live with at some stage.
But one thing I will never stop is being so proud of how C copes with the pain, and how I can get a smile or a laugh out of her. You have never seen me smile so much if she is up to a little trip out even if it is just a short trip somewhere boring, she is up and dressed and out of the house.