Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Sam's Story'

Lake view

My name is Sam, I turned 50 last year and I blog over at StressedMum, I have been married to my Husband for 15 years and we have our Daughter c who is 14, I also have two Stepsons who are now both adults, one made us Grandparents to our gorgeous Granddaughter in November, and the other is going to give us a Grandson in February. I also have a very mad dog who is my cuddle monster and the one I can cry into when things get to me. I started my blog in July 2015 just as our Daughter C, who was 11, was finishing her Primary school and moving onto her next adventure of Secondary School. C was so excited, and so was I as I thought I could get a bit of me time back and watch her gain her independance's and need us less. Just before she started her new school my parents took her away on a Disney Cruise. How i wish we had kept her at home. The night before they were due to come home, C fell ill, when she got home she had a temperature, sore throat and what I thought was a bug. She got better (or so we thought), and started her new school and started to enjoy a little bit of freedom, while I enjoyed no school runs, texts to ask if friends could come to tea, or could she go there instead of coming home. She celebrated her 12th birthday in the November, with a shopping trip into town with her friends and then a sleepover at home. She used to get tired and some days she would ring me and ask if I could pick her up as she was too tired to get the bus, now in hind sight we should have realised she had not recovered, but you just never think it could be anything else really. Christmas 2015, came and went and although now it was plain to see she was not well, we just thought she was a bit run down or picked up a bug. 11.45pm on New Years Eve our lives changed forever, we were at our friends house having a party when C struggled to walk over to me and looked ill. This has been our lives ever since. When school returned in the January C was in bed, she was too ill to get up, she was so tired and her legs would not hold her, I lost count of the times I would be stuck in the middle of a room holding her up. She tried going back into school when we thought she was getting over it, but could only manage an hour or two at the most a day or two a week. This was probably the hardest part of our journey so far, my baby girl was ill. She was too ill to go to school, too ill to see her friends and do what all normal 12 year old girls do. We seemed to live at our GP surgery or on some occasions hospital, our GP referred us to a Paediatrician, who at first seemed lovely and understanding, she also had so many blood tests I felt for her. We kept having to see our Paediatrician who would keep saying to C, it is just a bug you will be running around next time I see you. Just before one of our appointments my Husband was looking on the Internet and read out a list of symptoms about ME and we were both saying yes to most of them. On our next appointment I mentioned this and was told I was being stupid. We carried on going for appointment after appointment to the GP or Hospital, including visits to A&E, all the while C was ill, I was going out of my mind with worry, and seemed to be hitting brick wall after brick wall. All I wanted was someone to tell me what was wrong with her. While all this was going on, she was too ill for school, I have to say her school have been amazing with us, we have been very lucky as have heard some real horror stories. They really tried everything to help her be in school. Finally in the March 2016, C was diagnosed with ME, at the same time I felt relieved we had a name for it, but also heartbroken it was not just a virus or something that could be treated and she would get better. It turns out she caught Glandular Fever on holiday, which caused her illness. Her Paediatrician, continued to keep saying you will be ok and be running about soon, and on what turned out to be our last visit to him, he sat there in front of a young girl, telling her off for not being active enough and she will get fat and lectured her and also said her illness was in her head, C sat crying her eyes out into my shoulder. I actually sat there open mouthed trying to believe what I was actually hearing. I cut the appointment short and we left as we were leaving I told her, we will never go back to see him again. Before C became ill, we would love to go out as a family on day trips, little breaks away or on holiday, or if my husband was working we would have our little girlie shopping trips, where we would go around the shops and have lunch out, or if we went after lunch a drink and cake stop. But since she has been ill this has had to stop, as she gets too tired, she says it is like when you go to bed and you are really really tired but you are like that all the time. C is not able to attend school at the moment, and we now have a tutor in place who will either come to our home to give her tutoring or we will go into school, she is meant to have an hours session twice a week, unfortunately this rarely happens. We had to cancel yesterday, and today she clung to me for support as she walked in, as she did not want to use her wheelchair, and looked so ill. She ended up staying in the reception area and having a 10 minute lesson. When we got the diagnosis, I started looking for support, as a lot of professionals do not know about ME and many think it is just a made up symptom. I found a great group on Facebook for Parents of children with ME, and within minutes of me joining and saying hello, the first person to say hello back, was one of C's old Primary School TA's. Her Son also has ME but is older, she has been my life line and helped me so much. Through the group, I heard about a great Consultant who actually knew about ME and was sympathetic to it, he is such a great Dr that people travel hundreds of miles to see him. We are very lucky he works in our local Trust so was not a traumatic journey for her. We saw him last year, we walked in with a completed questionnaire that had been sent to us to complete, and had so many questions on. But he sat there and talked to C, and he listened which is another thing that had been lacking in our care. He examined her and his diagnosis hit me hard, she has Severe ME and Fibromyalgia, we left with increased medication and a list of supplements to try. When C has a crash, she is stuck in bed, she looks ill, and is freezing cold and in pain, often her legs just will not work and she will collapse on the floor. This happened on Monday luckily it was by her bed and I managed to lift up the dead weight of her and somehow got her back onto her bed. I am very bitter about this illness, as it has taken away my Daughters normal daily life, no school, no friends as they have all slowly drifted away, she is lonely and often breaks her heart that she wants to be normal again. All I can do is sit and hold her until she has calmed down. We know if we have something planned like going out to see family for a few hours even, we make things as easy for C as possible and she rests up before hand so she can cope with that short time out, and we know she is probably going to go into a crash the next day, which will mean her legs are painful, and will just go from under her, she has constant migraine type headaches which she takes medication for, and she is just so tired she has no energy. My heart breaks daily for C, as I run around after her, helping her, I am angry that this illness has stolen so much from her, I understand but also get upset that her friends have forgotten her, I am lucky I can work from home and be here for her, and when I need to be out, my Mum is there for her. I always manage to get a smile from her or a laugh, even when she has collapsed on the floor and I have to try to move her, we have found a way to laugh at everything, it is something that gets us through each day. As a parent, I find each day hard watching her suffer, but it has made us extremely close, I am also very sympathetic to anyone who has any sort of illness, where others may think they are putting it on, they are not, one piece of advice I was given at the start of C's illness was always believe her, never think she is lying, as this is what they face all the time from professionals. One thing that has become a positive through this is my blog, I can write about ME, which I now do monthly in my monthly catch ups, as I have people follow how C is doing, and can also spread awareness of chronic illness. Our next step is to try to get C well enough to have at least a bit of a normal life, since she was little she has wanted to be an animator, and this illness has not taken that away from her and she does some amazing drawings still. If anyone is reading this and suffers with ME or Fibromyalgia, or know someone who does and wants to ask questions, please message me, because if I feel I can help others then at least the heartache and pain will have been worth it. You can also follow me on Twitter and Facebook

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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