Tuesday 16 August 2011

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.

Wednesday 10 August 2011

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.....

Wednesday 3 August 2011

Glimmering Light

First fittings where simple it was just taking measurements for of my stumps for the inner sleeve of the cup.  Found out that they have deceased in size thanks to the stump shrinkers, so now just waiting on the appointment to come through for the casting for the cup itself.  The system am getting prescribed  is I think called the lock and bolt system.  From what I understand I will wear a thin sock liner, in liner then the cup its self.  Then the leg will twist and lock into position using a type of bolt/fastener on the bottom of the cup.  No straps or carry on with them.  At the moment I will be still limited to the size heel I can wear but if I can lose the 2st required I will be able to have a more flexible foot where I can wear any shoe I want!!!!!


I can't even imagine what that will be like! Never in my life have I been able to do that, I just wish my mam was still alive to see it after all the years of pain she had, blaming herself for the way I was born and what I had to go through.  I think the biggest thing am looking forward to is buying a pair of knee high suede boots in the winter.  From being 14 I have wanted a pair of boots like that or the pirate ones, I can't wait.

Still not back at work yet although am hoping to get signed off to go back beginning of September.  Need to speak to OT yet as I may need to have a risk assessment carried out first, then need to speak to access to work to get taxis put into place to get me there  and back.  Have decided not to go for a WAV vehicle as it means putting in for  whole new / different type of car due to needing the wheelchair adaptations, so seeing as it will only (hopefully) be till October /November time then we have came up with a way of two people lifting me in and out the MPV we have.   This means that we can now go to Lego Land (courtesy of Allison from NEP), which will help keep the kids spirits up as they are stuck in the house as much as I am at the moment.

Port Orleans

this is where we are staying

wish it was now!!!
My silver lining at the moment is we have finally booked for the Clark family holiday to Florida (Disney ) in 2012 !!! Although am still having more bad days then good on the emotional front I try to keep this in mind.  We have made a count down calendar and when I feel things are starting to get on top of me  I look at it and remind myself why am doing what am doing, that everything I have done and am doing is for the better and worth it in the long run.  Just being able to do some of the simple things such as shoe shopping with my eldest daughter, dancing with my husband, playing in the park with the little ones and going on the attractions with them, keeping up with them , walking without pain...these are just a few of the things I will be able to accomplish by the time we go to Florida......I hope.........