LIFE GOES ON

So not coping too well with the staying at home thing until my health is better.

Applied for a job today, just local and part time but lets see how it goes. Other then that still waiting to hear from the rheumatologist, as still need the ultra sound on my hands and the results from the x rays and bloods.
In the mean time I have opted to down grade from the morphine back to Tramadol for pain relief.  Unfortunately this doesn't work as well as the others but it gives some relief and I am hoping along with the Amitriptyline and the sleep clinic and therapy, it works.

Still doing the physiotherapy in the mornings, now up to 45 minutes each time but  without them I have a lot of pain and great difficulty in moving.  Some mornings I can't. So at least the exercise keeps me moving... literally

This is where are hoping to stay the next time we go to Florida.  The weather there was amazing and really helped  my legs and arthritis  This was when I noticed how bad things had got.  Whilst in Florida not only did the aches disappear but my mobility increased dramatically. Upon return to the UK it seemed to hit me in a matter of days.  Not only did the pains come back ten fold but my mobility suddenly dropped.

The  stumps are not doing so well either, due ton so if swelling and circulation issues. Will eventually have to bite the bullet and go back to the limb centre to be remeasured and re fitted for my legs. The only concern is that due to my considerable weight gain I may not be able to wear prosthetics. Trying to lose the weight should be easy in my mind, but as most of you are already aware of, not so easy in reality. But lets keep trying. I was once told by my granddad that you get out of life what you put in so if you give 110% you will get 110% back. So every day I start again and try.

HOW TIME FLY'S WHEN YOUR HAVING FUN....NOT

Well it is hard to believe that 5 month has gone by.

The road I have been  on has been a bumpy one to say the least, with lots of twists and turns along the way. The first thing I guess would be to mention what happened at the tribunal.  Well I lost but not after proving my point and making them very uncomfortable.  They turned up 6 suited and booted to my three, they had a lawyer I couldn't afford one so represented myself. His statements where contradicting and he even tried to say that I was in a wheelchair prior to this amputation which is untrue. Although I lost it felt really good to be able to take a stand for myself for a change and not be intimidated to back down.  The holiday was excellent!! Best thing ever and just what the doctor ordered for me.  Although the legs did blister and I had to spend at least one day with out my legs on, it did not put me off  from having fun and I have to say all the staff at the hotel and theme parks where very helpful so a big thank you and well done to Disney world. In fact they where so helpful that when we turned up we found out that they had put us on the second floor, bearing in mind I still cant do stairs. They immediately changed that for us and because the rooms where not wheelchair accessible ( although they where still roomy enough for me to get in and maneuver with my wheelchair) they provided a bath seat for me to use. The flight staff where brilliant with Thompson's as well we booked in premium economy for the extra leg room and it made all the difference to me. They where great with the wheelchair and the assistance on  and off the plane, getting rid of all the fears I had.  In fact I enjoyed the holiday so much we are planning to go back next year. Nearly all the rides where wheelchair or disabled access and everywhere we ate very accommodating  in fact so where all the shops and transport as well.

However, on my return things took a  turn for the worse.  Within two weeks of being back in the UK I started suffering with pains in my hands, fingers,wrists, shoulders and back. This was annoying to say the least as in Florida it had not effected me in fact the sunshine and the heat helped to improve my mobility greatly. Within a very short period of time I ended up on the sick and have since had to leave work altogether.  The doctors checked for rheumatoid arthritis as I already knew I had arthritis just not what type, but this came back negative.   I have tried liquid morphine, zoramorph and oxycontin which just ended up in server side effects and a lot of time staring at walls!
In the end I was referred to a rheumatologist at the hospital who thinks I may suffer from Fibromyalgia that is also causing chronic fatigue syndrome. To make sure they have x rayed my hands, taken more bloods and I am awaiting a ultra sound as well. Unfortunately this is something I will have for the rest of my life but symptoms can be elevated with exercise, help with sleep and medication as well as less stress and relaxation ( 6 kids(one being a hormonal teen), one dog, one cat and two kittens..really? they think I can cut stress out and relax). So the plan is they want me to attend a sleep clinic and start taking amitriptyline.  I already exercise every day due to the physio  I do and I am looking at ways to loose weight, so cross your fingers (cause I can't ) that it works.  I am hoping to get back to work once the pain of this is under control. Obviously the knock on effect it is having with my walking as using the crutches or wheeling myself around is extremely painful and it also can be connected to the pain I have in my stumps.
So at the moment  I am waiting to hear from the dole regarding ESA and have applied to University to study Psychology so hoping that comes through.
OOh before I go another thing to add to the list of things wrong I also have a stomach ulcer.....my life is great  :)

TEARS, TANTRUMS BUT NO TIARA'S

Sorry it has been a while since writing anything down.  The only excuse I have is life getting in the way.

so much has happened since the last time I sat here to talk to you, where to start?  From the beginning I guess.

I am doing good. After a few false starts with the physiotherapy, things started to get a lot better. I had some issues with blisters that we thought was down to the sockets or the liners not fitting properly, but what we found out was it was due to the stumps sweating. I know this sounds bizarre, it did to me when it was first mentioned, but every time I put my legs on any activity I do will heat them up, there fore they will start to get "sweaty."   So after some research ( as this had never been mentioned before) I found out how to care for my stumps and the liners to help prevent this from happening again.

So every night I take the legs off to rest the stumps.  I wash them down with warm water but no soap then dry them thoroughly.  Then I use a soft lint free cloth and warm water and wash the inside of the silicone liner and dry it off with a lint free towel.  Then I use a little bit of baby oil on the stumps just to make sure the skin doesn't dry out.  At bed time I use a specially formulated deodorant in roll on format.  no I know what you think deodorant for stumps, but this was actually recommended to me by my limb specialist. you put it on and let it dry leaving it over night then wash it off the next day. you must follow the directions .  so far it has reduced the redness I was getting from wearing my limbs and as long as it keeps the blisters away I will be happy.  Especially as I am off on holiday in 8 weeks.

The physiotherapist was so happy with my progress that they have now moved me on to elbow crutches in the house and for transferring, which means that I am sorted for my holidays.  I ended up losing my temper (surprise), for the umpteenth time when I couldn't get into the car the way they where showing me.  In the end my friend came round with her car and I worked it out on my own, sometimes i think it just takes them to show you the technique but for you to actually go out there and do it for yourself.  I also believe that when you do finally conquer those demons that it means more and does more good for your own self confidence.  I have missed out on a lot over the last couple of month due to be too scared to try things including my sons 8th birthday party, going out with my kids and the Jubilee celebrations at the park and beach with my family. But know am ready to go back to work in the office.
My current employer has been fantastic in supporting me during these last couple of month and just wished there where more companies out there who could be supportive of there employees regardless of what is wrong or whether a disability is involved or not.  I am not going to lie.  Going back to work is scaring me shitless !! I don't expect you to understand. I don't really understand other then to say that am scared of making a fool of myself and not wanting to be relying on any one for help.  In an ideal world I would be able to wait until all my rehab is over, out the wheelchair, no longer needing the taxis, no sticks, fully independent.. But needs must when the devil is knocking at your door as the saying goes and I do have holiday money to save up.  I think my main concern is two fold really.  One that something will happen, I will fall or something at work and show myself up (again), in front of every one I work with and second, I stick out like a sore thumb when I all want is to "fit" in and belong.  I have to rely on everyone for doors, for drinks, dinner etc.

I could leave work and go on ESA but I have no idea if I would be entitled to it and it would mean a hell of a drop of income.  Why would I not be entitled to it ? Well that brings me to my other bit about what is going on in my life at the moment.  I am currently taking a former employer to tribunal for discrimination and unfair dismissal.  Part of this is non payment of National Insurance, which means am missing a years worth of contributions.  This in turns means no benefits, this is why I had no choice but to rush straight into another job when I could have done with taking the time out for rehab to be honest.  So as you can see no idea about ESA.
As yet the former employer will not accept the claim and is trying to say that I am ...well...basically paranoid, but he is also trying to get out of the unfair dismissal part as well by trying to get it struck off.  Looking at my new employer and my past employer , the difference  is unbelievable .  The size of the companies is not much different  but the way they treat their employers is phenomenal !!

And finally the holiday. 8 weeks till I leave for Florida. The arguments I have had with Thompson's is unreal over the dinning plan and believe it or not they booked my wheelchair on the plane and although it was requested no assistance for getting on the aircraft or off it !!  I have asked Disney for a adapted ground floor room so lets see what we get. It has been suggested that I email the holiday company direct and see what happens, maybe I will.

However I am still waiting for my lottery win so I can buy better legs and enjoy my holiday,but still no tiara....