Tuesday, 4 October 2011


Me with my assistant Canine Partner dog, she is the best when I am ill.

I have those days where I lie in bed awake at ridiculous o clock thinking I do not know how I will stand up today. I literally do not know if my feet will engage with the floor and if they do, if I will be shot to the ground with pain.

We had a nice day out yesterday as a family, the first in ages but wow the bird and deer park is hopeless for buggies and wheelchairs! It is all built on a steep slope! Sure the tame deer were almost at my side standing still as if to give me a hand, but at times I just couldn't climb because my stupid ancient ankles don't flex that way. As for my poor husband with dodgy shoulders and hands any way, he was left trying to haul my son up in his buggy. Still we managed somehow and sort of laughed although our son ,who was wailing, was saying how we all really felt. We decided we had earned a Carvery meal,we got there and Christopher decided we were not going to get to eat it so we fed him half of it and shoved what we could down our mouths. We got home at 2.30pm and were exhausted, we could barely walk. The irony of it is is that the little so and so cheered up as soon as we got home, grrrrrrrrr. Still for his own good we are going to struggle out once a week as a family.

Today my husband and I just moaned for a good two hours, we both were stumbling to our pain killer drawers. It isn't the pain that zonks us out, it is the immune side of the illness that gets us, it starts off wiping your body out of action the same day as any activity, by the next day you feel swollen, hot, like you are burnt all over,like someone has stood on your hands and feet in huge football spiked shoes. The problem is our son is ready for action at 6am and he is there with a huge grin and babbling chatter. However many steroids we take for the day, no matter how many opiate pain killers we gulp it can't sort the immune side effects out. Son is sat there on our bed looking around for a good fun time and he has two young ish adults who are like 100 years old in their bodies, looking back at him with pale faces and black rings of immune illness around their eyes,I am surprised our son doesn't cry when he sees us in the morning!

So today we all went back to bed at 12.30pm after having played with his bricks on the bed, reading every book he has in his room and doing his flash cards, all stuff that can be done on a bed. We physically could not get our hands to function any more than to do nappy changes and to stick a vest on him. He was happy with that.

We will go out again next week, we have to for his sakes but we have to just get used to accepting that the next day we will need to do very little, that's hard for a Psychologist and Graphic artist, we don't have numb minds, we hate daytime tv and we try to keep mentally full days. However sometimes we need to accept our limitations,deal with the exhaustion. Our son will need to learn that we will give our absolute most to him in whatever way we can but there will be days where we just can not be full on fun machines. We will never let our son do any thing to care for us because we had him to be our son and for us to care for him but I always think it is good for a child to grow up being perceptive of others plights and be understanding and patient.

Heck he may get sandwiches instead of big meals on these bad days but we'll sling in some lettuce leaves for the healthy brigade,he may get read every Mr Men book in my extensive collection of "childhood books brought to bribe me to stay still for my blood tests", instead of playing in the park but he'll always have so much love.


  1. I honestly don't know how you bear the pain. But your little man clearly receives more love, time and affection than most babies. It really won't be long before he is off running about and climbing up onto the sofa with toys. I would recommend a rucksack baby rein thing for him though. I have one..... it fits a nappy some wipes a drink and a snack in. The straps are padded.....only one clip and is far less fiddly than most harnesses. It means they carry their own stuff lol! Xx

  2. That sounds an excellent idea! I shall look into getting one of those. I can't wait till he is vertical! I don't like to moan on here but goodness it is tough sometimes and I know any parent will know what I mean when I say that.

    Thanks for the suggestion, it is good to plan ahead at every stage so I shall get thinking about my plan of attack when he is zooming around :)