Sunday, 17 July 2011

8 weeks post op

Its been eight weeks now since the amputation of both my lower legs.  It seems a  LOT longer then that believe me !!

Over these last eight weeks I have experienced  a roller coaster of emotions and feelings. Some of them real some of them not - these ones tending to be due to over exaggeration and sensitivity on my part.  Don't get me wrong I never thought It was going to be easy or that I was going to get away with things scot free, but the scary thing is no matter how prepared you are for something like this it still hits you harder then you expected.

I think the biggest problem for me has been stuck in the house and in this wheelchair.  Now I know that plenty of people have to live there lives in a wheelchair through no fault of there own and to me those people deserve medals as to try and do ANYTHING from one of these things is a nightmare !  I have been waiting on OT to come out and access the house as it is not adapted at all after 8 weeks they finally turned up, only to be told they don't think there is anything they can do .  So I can't reach things on the bench, prepare a meal for myself   or get a drink, go in the shower or bath, in fact I can't be left on my own for long and I am totally dependant on other people.  I hate this. With a passion!!

My day's at the moment consist of doing my physio which takes and hour, playing on the laptop, doing updates for my husband , reading and watching telly. The problem is I do this day in and day out, seven days a week.  Because there is no ramp for the front door I have to access outside by my husband lifting me and the chair over the step at the front door, but because the car is not adapted which we can't afford, I can't go anywhere!!  The frustrating thing is that a lady called Allison (no last name given) from North East Press, pulled some strings with the press office at lego land and got us all free tickets to go!!.......hoorrraaayyy I hear you shout, but hold on do I get there? who know's cause I sure as hell don't !!
The Carers Centre has grants/ funds available for carers to have what is called restbite breaks, so we are applying through that for funding to get down to lego land.  We are also getting quotes for adaptations for the car and applying for a grant through the Mobility fund to pay for it, but if this gets refused then we are stuck as these things can some times run into thousands of pounds.
Depression is starting to slowly set in as I feel stuck in a rut and not getting any where fast.  I have been signed off from the surgeon which is good news but still need to go to re hab and fittings at the limb centre at the Freemans in Newcastle and Physio at the Sunderland Royal as well as getting signed off the sick by the GP.  The wound is healing well as you can see by the photo opposite the compression bandages have now been removed and I now have stump shrinkers called "juzos".  But things are not all good news. Because of the set back we had with the wound opening it looks like things will take a lot longer then I expected.  I will be lucky if  by the end of October I will be able to transfer from my wheelchair with a walking aid to another seat!! I cried when I got home...a lot, then I cried again. Fittings start in 2 weeks time although am still waiting for my appointment for physio to come through.  My boss is eager for me to return to work but I now have no idea when that will happen, the money would be good as SSP is not a lot to  keep a family on especially a family my size!! Still waiting for Adult services to see if direct payments could be used for transport so I can go out and DLA has informed me it will take them 11 weeks to reassess my case!! Well, what does it matter, am not going any where.
  I have to admit sometimes I do sit and wonder why I put myself and my family through this, was it worth it? sometimes,more recent at the moment, I would have to say no.  I am pain free (for now at least) but the los of my previous life, keeping active, being able to be independant, the extra pressure David and I are under( although he is coping fantastically),the financial los and the extra responsibility Annabelle and Michael have makes me feel shelfish.

Sometimes getting out of bed is an effort because I think " why bother?" "whats the point?"
To make things worse I have just found out that my eldest sister has a brain tumour that is going to be operated on soon.  We are not close, to be honest I haven't seen her in 5 year since my mother's funeral who died of stomach cancer, but she is still blood, the last remaining member of my family......
The only light at the end of my tunnel at the moment is our planned trip to Orlando and Disney next October, but the way things are going at the moment am not holding my breath, lady luck doesn't seem to like me much  at the moment and its not easy to try and ferret money away when  you are not getting a full wage.

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