TIME TO START AGAIN

Well I know its been a while since I have posted anything, but to be honest there has been very little movement ..until now.

I cancelled my appointment for my castings at the Freemans Limb Center so that I could take the kids to Lego Land.  It put everything back around 1-2 month but so worth it when I saw the children's faces when we arrived at the hotel let alone the two theme parks.  However traveling was a worry as I couldn't transfer into our car as it is  the size of the A Team van.  so with a help  of a friend who used to be a carer, we devised a way of my eldest , Michael, and my husband David , to lift me in and out of the middle seats.  To say i was nervous was an understatement and when we stopped at the first service station i was concerned but everything went with out a hitch much to everyone's relief !  However the whole trip put me out of my comfort zone. Over the last few months I have become so used to be stuck in the house, I had started to become agoraphobic , so this trip to Thorpe park and Lego Land was (excuse the pun) huge step for me but one I needed to take in order to put things back in to perspective.

The hotel and disabled room was fantastic !! I would recommend Wotton House to any one.  There was load of space to maneuver and the staff where brilliant every where bar some of the gardens where accessible.  But the time looms closer now for my castings which is taking place on the 28th of September and hopefully it will be a couple of weeks after that my legs should be ready to use in Physio.  However I have been given another appointment to see the surgeon which is confusing because as far as I was aware there was no more need to  see him. Pain is back to some degree, along with the pins and needles, I also have some numbness in the stumps which is bizarre but the true test will  be when I am up and about on my new legs.  Then we will be able to see if the pain is back as bad as before. Didn't get on any rides as  I couldn't transfer onto them  but was very happy just to sit and watch the kids have fun. Still working hard on my exercises every morning and planning on a complete makeover when I go back to work and when I get my new legs.  So bought hair dye, looking to get hair cut, new out fit and some new size 6 shoes.

Have also had work on the phone wanting me back asap, which is great because I am more then ready to be back at work, although I would have preferred to have been upright on my legs, using the metro instead of in my wheelchair using taxis to get  back and forth from work.  But lets take it slowly to begin with and here's hoping that I am up and about on my new legs in time for Christmas,which would be great.

Pointless

Not a lot of movement at the moment.

Had the measurements done for my inner liner but things now seem to have come to a standstill. This is disappointing.

Was hoping that the casting for the socket would be done quickly after this but no.  The appointment  is not until the 1st September.  This means that it will be at least another 4 - 6 weeks  before the legs will be ready for fittings, then we will have to see if  they fit properly.  If not then they will be further delays.  So over all this means that end of September maybe even middle of October before my legs will be ready.

Got my first Physio appointment through for last Friday.  What a waste of time !!!!!!

They where under the impression that I had my legs and was ready to learn to walk as the Limb Centre had told them they would be ready for the middle of August.  So that was an hours appointment wasting my time and theirs as there was nothing that they could do until  I have my legs from the Freemans.

They tried to be very nice about it but you could see she felt sorry for me as my face must have spoke volumes.  To say I was disappointed is an understatement.  Tried very hard  to stay calm,happy and smiling as well as non tearful . Not an easy task.  So just ended running through my exercises that I was doing at home and talked about things I want to achieve with my legs.  They have also agreed to let me use their pool so I can learn to swim again without legs.

So trying to see this as a bright side....hard.

So next for me is to see if there is any chance of bringing my casting appointment forward but no joy as yet.
Nothing from work about going back as yet and still trying desperately to get to Lego Land but looks if it will be well after the Summer holidays now. Managed to get out of the house. Went a street away to a friends house who cooked us a meal. It was lovely!!! Don't know what I enjoyed more being out, the meal or just being jen instead of mam.

Guess who's Back?

The pain in my stumps that I suffered with before is back.

What can I say?

Other then am disappointed and upset by this, but it was one of the risks we where aware of.  We knew that it might not help the pain I was experiencing, the burning feeling or white hot needle of shooting pains, nor the feeling of the skin being too tight feeling like there is a tight elastic band around it and don't forget the jumping leg muscles as they cramp.
The only consultation (if that is what you can call it), is there is no constant needles and pins feeling.  However it does mean that sleeping has become a problem again.  Can't bear the legs to be under the duvet nor on top of each other for two long as it is unbearable.  So it means constantly turning over and have you ever tried to turnover with no legs? no? well it is not easy! It means that my sleep is disturbed every night.
They said that the pain I was experiencing previously may be ingrained in my mind, psychological pain if you want, due to the fact that I lived with it for 4 year after the last amputation.
So instead of leaving it at that or going on to anti depressants permanently which is not an option as far as I am concerned, I am going to do my own research into cognitive therapy and alternative therapies to see what I can find out.

I am depressed.

But this shouldn't be a surprise to any one. House bound for weeks, no movement on any front, not being able to have a shower now this.

Oh and to top everything off my next casting for the socket is not going to be until the 1st September which means no legs ready to use until at least November/December time.

Trying to get back to work for the first Monday in September.  The building is disabled accessible and so is the bathroom, but it means still being stuck in the wheelchair with stump boards for at least 3/4 month, waiting to hear from my boss regarding start date though.

Really hit a low point at the moment.  Even the house is getting me down.  I know people in wheelchairs go to work everyday and deal with day to day things in the house like cooking,cleaning, bathing etc but ever tried doing these things in a non adapted house? with out the needed equipment? its not easy! I would kill for a shower!!!  Occupational Therapy (OT) cant do any more to help other then suggest we move, they can't even adapt the downstairs shower as it is too small.  The council don't have any where big enough and social housing only have 1 private land lord in a run down inner city area with no outside space for the kids (or dog).

I just want my independence back, I want to be able to go out, do social things like the pictures and shopping, go to work, do my own housework, have a bloody shower!

I just want some good luck for a change and things to start going right for us.....