Saturday, 24 September 2011
The art of juggling
Well I went to London to see about updating these knees, you know a bit like updating a laptop or a computer, you feel your technology is getting a bit slow, you don't know if you really want to take the next jump but you can't keep waiting for an age for something to work and get into gear! That's what it is like as a mummy with any physical illness and in my case plastic knees that have served me well for 18 years.
Off I went yesterday,with a Mr Chatterbox ambulance driver, for my 7 hour round trip to see the specialist surgeons for JIA. These surgeons are specifically excellent at sorting out tiny, almost baby sized joints and because I was treated solely on steroids since 15 months old my joints have not grown to full adult size.
I got up at 5.30am, fed my son,cuddled him,read to him, practically tried to live a whole day in one hour with him as I wouldn't get to say goodnight to him that day. I got him dressed for the day because Daddy tends to dress him in a daddy way, I'll say no more on that but mummies know what I mean!
I text ed my sister to ask if she could help my husband in the afternoon and take Christopher off his hands for a break which she did, my sister takes my son out for his Physical Education, she is a bit of a health addict,so he went for a jog around some fields which gave mark a break from lugging him around which has a big impact on his pain levels. I am so grateful to have a sister.
All the time I was texting the ambulance driver who couldn't stop talking was offering running commentary to my phone use. Finally we got to UCLH to see Mr Witt the fantastic plastic surgeon.
UCLH has self service checkouts like you get in Supermarkets, it won't be far off before they have patients wearing bar codes at that place so we can just swipe ourselves in and swipe ourselves out. However the system was drastically going wrong and I got into a department of irate patients which helped my Mr Chatterbox headache no end! Fortunately I am known in the department as I have been going there for 30 years so even though self service was not logging patients in, they could see I had turned up.
I went to see the surgeon who was a registrar, my heart immediately sunk, if I am to travel 7 hours then I expect to see the main star of the show at least! However he was actually quite good, Mr Witt obviously selects his people carefully. He had interpersonal skills and actually listened,registrars often are so keen to make it they forget to listen! I explained how my knees were crunching bla bla bla.I explained that I was so worried about having to leave my son right now because love aside, practically I fear for my husbands joints and the strain they are under when having to spend potentially weeks without me and having to carry Christopher, get Christopher dressed, bath Christopher, all things that cause us both an awful lot of pain and that is sharing the load!
The x-rays showed my knees were stone age knees and needed updating as they were worn and unstable. The little guy went and got the big gun in so I got to see Mr Witt, they are such nice chaps they said "call us if they are getting worse, we'll keep an eye on them and see you in 12 months" I was so happy! It had weighed on me all week the worry of what would I do about Mark and Christopher if I was made to go in next month for surgery.
So I am home, with my family and thankfully not got to worry about leaving them unless something drastic happens to my knees. If they can last just another year, maybe no wii fit for a while, I won't even attempt to do a stair for the next 12 months, I can make them last long enough for my son to be walking and able to understand basic commands so hopefully it will be lighter work for my husband. My son is so amaizing to me, I want to be with him, I dread leaving him, it will be heartbreaking when I have to go for a few weeks away from them both. When the time comes I will do it with a smile, I will do it knowing that I am doing it so I and the family have a better quality of life together.
Thank you for reading x