Hughes Fatigue...and a beautiful daughter...

Hello all,

Well I haven't been around because it has been my daughter's birthday and my hubbie's birthday this week and now I am absolutely cream crackered!! It has really taken it out of me, physically and emotionally and I am finding it very difficult to stay awake!!

Tuesday afternoon I promised my daughter that we would go and spend her birthday money at the Bear Factory!! We did and some!! The stuff there is fabulous, with huge "awwww" factor, but everything is sooooo expensive!! Anyway many tens of pounds later, we had a new bunny, with 3 new outfits, a raincoat, wellies and shades in a big blue box and off we went. When we go to Meadowhall Shopping Centre, I take my wheelchair as it gives me a bit more confidence to get around without falling over. Even so, moving myself in the wheelchair up slight inclines is very tiring and I do find myself out of puff and very tired. To an able bodied person, they would not notice how slopey the walkways are, but when you are pushing my weight, plus the weight of the chair, my arms and stomach muscles suffer, so that is aching arms/shoulders/tummy for 4 days after!! I only do these type of trips occasionally as it takes me so long to recover. It was my daughter's birthday though, so I had to make an effort.

She breaks my heart with her compassion and love for me...I am proud of her every day that she asks how I am, if she can help or reminds her brother to think more about the mess he is making...Every time we go out in the car she asks me if I need one crutch or 2, she puts the disabled badge in the window and always grabs my handbag so that I don't need to stretch to get it... she will always offer to push me in my wheelchair even though she has the strength associated with a 3.5 stone 9 year old!! She understands when I can't play stuff with her, she is fine with me not coming to sports day because it is being held on a field miles away that I would have difficulty getting to...she never seems embarrassed that I am on crutches and always explains to her friends that Mum has a bad back and Hughes..the bad back seems to resolve any questions that most people have instantly on meeting me...she can explain the Hughes though, what is happening with my body and why I get so tired and why I am achy etc...She has asked these questions and I have answered her honestly. She has seen me burn up in the sun, my joints swell, my skin rashes and mouth ulcers, my hair falling out. She sees me like this, yet she always says how beautiful I am and how none of it matters because I am the best Mum in the world...Well I am not sure about that, but what I am sure of is that I have the BEST daughter in the Universe..who doesn't know how much she means to me and how I wish that I felt better on a daily basis so that I could do more with her, that I wished that I wasn't an embarrassment to her, that I wished I didn't get snappy with her because I am so tired and how I wish I could summon the energy to get to that field to watch her come 2nd out of all the girls in Y4. Well done angel, I got to watch you dance at 4 galas and festivals this year and I got to watch you sing your heart out in the choir at the school production of Oliver. I also saw you perform your cheerleading routine that you had choreographed. You are great, you are talented, beautiful and so very very loved....you are my reason for keeping going sweetheart..

To all the Mums who have Hughes, I know that this will strike a chord, the frustration of being so ill, invisibly ill a lot of the time, really does take away a lot of the joy that our children can give us, but we need to keep going because of those children and hope that they understand that it is not our choice to live with Hughes, but it is our decision to live in spite of Hughes that keeps us going...and the love of our family that helps us do that.

Thanks for reading

Much love
Wend x x x x