There was an error in this gadget

Friday, 28 June 2013

TIME APART

It has been four month since I last wrote anything. To be honest I didn't see the point or writing unless there was something to write about and the last four month to some degree has been the same old same old....
However saying that certain things have happened.

Still trying to battle with the Fibromyalgia which has included and not limited to CB Therapy which didn't work for me, upping my exercise, changing my diet, playing around with the pain killers and just in case some herbal remedies.  So far the attacks are not as often unless I do something really silly like write, hold a book for too long or try to bake (Easter saw me laid up for over a week!)Still waiting on the Sleep clinic, off to there next week so lets see what happens.

With regards to my personal life I have re booked Disney for next year and I am happy to say that I have got my place at university to study Psychology in September.
 However as a disabled student I am still trying to get the college I am doing the first year with to complete a questionnaire I need done to enable me to be assessed by the University for the help I will  need whilst there.  I am glad to have something to look forward too as I am sick and  tired of being out of work even though I know it can not be helped.  I really don't understand how some people actually like this kind of life!  David is still working hard with his photography and my eldest is due to leave to go Staffordshire University in September. My eldest daughter is achieving well at school and I am very proud of both of them. I am unsure if I have mentioned this before but my youngest son Tyler has been diagnosed with ASD(autism Spectrum Disorder), which has proved to be challenging but very rewarding at the same time. It looks like last years trip to Florida helped him to adjust and accept certain things better so hence the reason why we have booked again, even if it kills me or breaks me, we are going back if it means it will benefit him.  Not to mention the brilliant time we all have as a family.
We have been told it is more social interaction that he has the issues with and is 2 year ahead in maths and reading then his year group/age and could sit his SATa now.  He is 98th percentile when it comes to using and understanding context and grammar of language....in other words he is a smart arse :)
The biggest thrill for me so far has been when I was asked to do a screen test  for a major film role but it is all hush hush so can say no more, but how many people get a chance to even do that, it was one hell of an experience !

Things with rehab and the amputation have came to a screeching halt am afraid.  Was trying to up the anti with the walking and being more independent (due to the fibro I can no longer self propell in the chair) and was using the recent nice weather to  try walking and physio in the park. It looks like I have developed a pressure point though.  Woke up 2 days ago, put my legs on, went to the bathroom (ooh which I forgot to tell you has now been fully adapted, we paid for all the decoration, the council paid for the adaptations)and when I took my legs back off it was bleeding right next to  my scar. After trying to get some information on what had happened and how to manage it (GPs as usual wanted nothing to do with it as it was down to my amputation and the district nurse couldn't do anything or suggest anything to do as it was not an open wound),  it looks like a problem with the legs so I need to go to the Freemans...but there is a problem you see....they will take my legs off me due to the fact am overweight for them.

Great choice eh? lose the legs, become totally housebound again (screwing up uni), and be a fat bird in a chair with less chance of losing weight (how do you lose weight when you can't get out of a sodden wheelchair?), or say nowt, wait for the pressure point to(hopefully) heal and keep trying to lose weight by exercise as well as diet (without starving yourself),praying the pressure point doesn't come back or get infected?

I am starting to wonder what help there is for amputees in the UK, or more specifically in the North East of England.  My experience's so far are not good. There seems to be no support network, or places to go to find out answers to everyday questions concerning pressure points or weight /exercise problems for example. It is very much a case of being bounced around from the doctors, nurses,limb centre,walk in centres and physio with many of them either unwilling to deal with you or just no understanding of what you are experiencing.



2 comments:

  1. Keep your chin up!
    Bruce McVey
    www.leftleglost.com

    ReplyDelete
  2. My uncle got into a construction accident and had to get his left leg amputated just below his knee. It was such a mess going through all the legal stuff but he had a pretty great personal injury lawyer so that helped a lot. I hope you keep your spirits up and keep blogging! I love reading your stories.

    ReplyDelete