Epic Fail

Trying to battle through depression this week.  As you may have noticed.  I think being stuck in the house and finding my life at a standstill compared to what it is normally is finally taking its toll.  I have been focusing on everything that is wrong and trying to force things to move along that it has caused me to shed a lot of tears at the moment and put an extra ordinary amount of pressure on myself.

So the focus for this week is to try and ease up on myself, learn patience, and let things happen when they happen.  Not easy when your a control freak like I am.

Have upped the amount of excersise am doing so up to about an hour and a half every morning. Not too bad. Was weighed last week at the Freemans and OT came out with  the surveyor and there is nothing they can do to this house regarding access or bathing.  The only option was to do major structual work which means moving the kitchen into he dinning room and turning the kitchen into a wet room.  They have decided that this would be a waste of funds as we are apparently over crowded and would need to move soon any way.  So there idea is to look for a larger house....another move..great.

Been on the radio again this last week . Radio Newcastle (BBC) talking about over coming adversity, so think it might be about time I practised what I preached and looked for my inner strength.

Two appointments coming up this week one at the Freemans for my first fittings and Sunderland Royal to see the nurse practioner at the limb reconstruction clinic.  Lets up next week is better then this.

Looking for the light at the end of the tunnel.

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 ..how 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.

Wound Check

sorry it has been a while in coming, but there has been some issues with my wound.

As you are aware after the amputation the compression bandages where supposed to stay on for 3 weeks before my first wound check.  After two weeks the compression bandage on my right stump fell off when I was transferring.  We rang the out of hours doctors who after a few calls passed it on to the emergency nursing team, who did come out and dress the wound.  Unfortunately within the space of  a few hours that bandage also fell off.  The next day we contacted the  doctors who told us to contact the district nurses which we did. They passed us onto the ward that discharged us who told me that they would only put a normal dressing on  and it should be the dressing room. After being told by the dressing room at the hospital that they didnt have me booked in and it would be up to the district nurse at the GP's.  So once again I rang the district nurse who then asked if we had bandages and told us to dress it ourselves, which we did.

A week later I attended my usual hospital appointment to find out to my horror that wound had opened and looked infected.  I was rushed straight back into hospital that day to receive antibiotics via IV. Due to the ward house officer being busy, these where administered late on the second day of being admitted.  I was informed however that if the wound didnt start healing that there was a good chance of ending back in surgery for it to be cleaned out or even re amputated! at this stage it was safe to say I was scared stiff !! luckily on the Saturday after assessment the wound looked to be clean and all tests came back clear for infection, so i was given antibiotics orally and discharged from hospital.

Thursday last week I saw the doctor again .  The wound is still open but looking clean still and does seem to be healing, all though slowly.  Fingers crossed it does other wise it could be surgery again.  The hospital are happy to move me on to the next stage which is to physio and fittings for my new legs with the Freemans.  The problem now is getting physio to agree to let me  start my re hab with the wound still being open and being so slow to heal.  The picture above was when bandage fell off 2 weeks post op if you look carefully you can see the beginning of the wound opening , it is much bigger now.

I have the appointment from physio for re hab.It starts on the 27th of July. keep fingers crossed!

Mood wise, not good I am afraid.  The main issue is boredom.  All of a sudden my life has gone from a million miles an hour, from working, housework, shopping, running a business and running after the kids, to full stop.    This is something you need to be prepared for...I wasn't. Another thing is I cannot bring myself to look at  the scars, they revolt me.  I am hoping that this is something that will change in time, touching them however does not bother me. I don't feel any different then i did before, no grieving, no sense of loss, no feeling of being less of a person which I think is good. However my world feels dark. Things at the moment seem to have come to a standstill for me, even more so now with the wound issue.  I have become practicably house bound due to the fact that i can not transfer into our car, which is an i800 8 seater, to high for me to transfer into. Even though it is a mobility car we cant get the money to have it adapted to enable me to use it. There fore every time we wish to go some where we have to use a disabled/wheelchair accessible taxi, so just to get to the town center and back is £14 before any thing else!  Still waiting for  a decision from the DLA regarding higher rate care. If we get that then we can apply for carers allowance for David, which he will be entitled to for looking after me.  We have requested help from Adult services for a ramp to make it easier to get in and out of the house and for bathing but still nothing yet.  Have also applied for Direct payments to help with the housebound issue but they wont help!The system in this country for the disabled and the vulnerable is a joke !

However  on a brighter note. My faith in human kind and the human spirit has being restored by a beautiful gesture . Having mentioned in one of the news articles that I did a few month ago that I wanted to take my family on a break, a lady from North East press at the Echo in Sunderland knows the girl in the press office at Legoland, so a few days ago we received in the post tickets for the whole family to visit Legoland!!!

So now am busy planning and saving for that. And to add another glimmer of hope David and I have decided to renew our wedding vows...in Florida!! so something for us all to look forward too, we are trying to book that for October 2012.

So light they may  be a light at the end of the tunnel after all, who knows?

Now if I could only get back to work..............