TIME APART

It has been four month since I last wrote anything. To be honest I didn't see the point or writing unless there was something to write about and the last four month to some degree has been the same old same old....
However saying that certain things have happened.

Still trying to battle with the Fibromyalgia which has included and not limited to CB Therapy which didn't work for me, upping my exercise, changing my diet, playing around with the pain killers and just in case some herbal remedies.  So far the attacks are not as often unless I do something really silly like write, hold a book for too long or try to bake (Easter saw me laid up for over a week!)Still waiting on the Sleep clinic, off to there next week so lets see what happens.

With regards to my personal life I have re booked Disney for next year and I am happy to say that I have got my place at university to study Psychology in September.

 However as a disabled student I am still trying to get the college I am doing the first year with to complete a questionnaire I need done to enable me to be assessed by the University for the help I will  need whilst there.  I am glad to have something to look forward too as I am sick and  tired of being out of work even though I know it can not be helped.  I really don't understand how some people actually like this kind of life!  David is still working hard with his photography and my eldest is due to leave to go Staffordshire University in September. My eldest daughter is achieving well at school and I am very proud of both of them. I am unsure if I have mentioned this before but my youngest son Tyler has been diagnosed with ASD(autism Spectrum Disorder), which has proved to be challenging but very rewarding at the same time. It looks like last years trip to Florida helped him to adjust and accept certain things better so hence the reason why we have booked again, even if it kills me or breaks me, we are going back if it means it will benefit him.  Not to mention the brilliant time we all have as a family.
We have been told it is more social interaction that he has the issues with and is 2 year ahead in maths and reading then his year group/age and could sit his SATa now.  He is 98th percentile when it comes to using and understanding context and grammar of language....in other words he is a smart arse :)

The biggest thrill for me so far has been when I was asked to do a screen test  for a major film role but it is all hush hush so can say no more, but how many people get a chance to even do that, it was one hell of an experience !

Things with rehab and the amputation have came to a screeching halt am afraid.  Was trying to up the anti with the walking and being more independent (due to the fibro I can no longer self propell in the chair) and was using the recent nice weather to  try walking and physio in the park. It looks like I have developed a pressure point though.  Woke up 2 days ago, put my legs on, went to the bathroom (ooh which I forgot to tell you has now been fully adapted, we paid for all the decoration, the council paid for the adaptations)and when I took my legs back off it was bleeding right next to  my scar. After trying to get some information on what had happened and how to manage it (GPs as usual wanted nothing to do with it as it was down to my amputation and the district nurse couldn't do anything or suggest anything to do as it was not an open wound),  it looks like a problem with the legs so I need to go to the Freemans...but there is a problem you see....they will take my legs off me due to the fact am overweight for them.

Great choice eh? lose the legs, become totally housebound again (screwing up uni), and be a fat bird in a chair with less chance of losing weight (how do you lose weight when you can't get out of a sodden wheelchair?), or say nowt, wait for the pressure point to(hopefully) heal and keep trying to lose weight by exercise as well as diet (without starving yourself),praying the pressure point doesn't come back or get infected?

I am starting to wonder what help there is for amputees in the UK, or more specifically in the North East of England.  My experience's so far are not good. There seems to be no support network, or places to go to find out answers to everyday questions concerning pressure points or weight /exercise problems for example. It is very much a case of being bounced around from the doctors, nurses,limb centre,walk in centres and physio with many of them either unwilling to deal with you or just no understanding of what you are experiencing.

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....

ALL CHANGE....AGAIN !

Well my first physiotherapy  went really well and have had another one since then.

All concerns where laid to rest when I managed to impress them with a sit to stand from the wheelchair to the bars without using the bars for support. After 6 lengths of the bar they told me that if I could sit to stand from my chair to a zimmer frame then I could take the frame home! As I have always preformed better under pressure and in the face of a challenge, ( just take a look at the rest of my life!), I managed and felt rather proud  of my self to say the least.
I asked Emma my physiotherapist  for a prognosis based on what I had managed.  Although it was not fantastic I was really pleased with it.  Within 2 month I should be steady enough and confident enough to transfer from my chair to a front passenger seat of a car or another chair, using a swivel transfer.  Within 4 month (in time for my hols), I should be able to get into the office without my wheelchair, get around the house with out my chair and when out shopping etc using  mixture of sticks and the wheelchair.  This means that although I will still need a wheelchair to go away with as well as help on the plane etc , I should be able to transfer into the plan seat, use the toilets, transfer on to rides and sit at the dinner tables for meals.
They still think at least 6-9 month before am out of the wheelchair altogether and using just sticks/elbow crutches and 12-18 months before am fit and well.  This weeks physio went even better.  Since getting the frame to bring home I have been practising very hard with the stand to sits from the chair as you can see.  So much so that when I went on Thursday they took me out of the bars and give me a walker (frame with wheels), and I walked 35 meters !! I was ecstatic! We are aiming for 70 meters this week.

Obviously I was still concerned about work as the news was good for me but not so much for that.  After a telephone meeting with one of the managers of the company they agreed to support me through this period which was fantastic!!! So at the moment I am working from home for 16 hours over a 4 day period which fits great with my treatment and hospital appointments. This will be looked at again 2 month.
Although this does now mean that I am totally house bound and a recluse because I now only leave the house for appointments at physio and hospital.  Nothing more has been heard from the council re a ramp and unfortunately whilst out on Bank Holiday with my daughters, even with a wider solid ramp and wider doors, I still went off the ramp and nearly splatted on the floor !! David pushed too fast, the wheel at the front turned and it went off the edge.  With the speed David was pushing it didn't take much  for the momentum to take the rest of the chair off ! Lucky for me David caught the chair before it went completely off and lift it back onto the ramp.  Needless to say he is not allowed to push me up any more lol.

I still can't believe though that in this day and age there is still places that although refurbished not long ago don't have disabled access.  Last Saturday was my best friends wedding, but due to the premises not having disabled access  I was not able to attend the reception day or night.  I was disappointed and my friend was upset by this.  As to date I am still waiting for a reply from the company that owns the pub.  Will keep you informed.

NOT GOING TO PLAN

It is surprising how quickly things change..and not always for the good either.

So am not back at work since the near mishap with the taxi .  The directors of the company called to say that they could not guarantee  to have the type of car and ramps that I would need for my type of wheelchair. so contract ended.  So this left me in a bit of a dilemma. Have spent the last few days ringing around taxi companies to try and get the right kind of car/ramps for my chair so that I can get to work safely.  OH and who are happy to deal with access to work.  Not as easy as it sounds actually.

After talks with my employer I am now temporarily working from home. On top of all of this my hours are now having to be cut to enable me to go to Physiotherapy twice a week so I  can learn to walk again.  It means that things are in a fine balance at the moment and am going week to week with my job as at the end of the day it can not be worked from home on a permanent basis.   Not great news. So now looking for work to do from home on a permanent basis's until all the rehab is done and dusted and once more I can return to the world of full time employment in the big bad world.  It does however make me wonder how other wheelchair users get over this as I know  that I am not the only person out there that goes to work in  a wheelchair?

Things for the holiday coming along fine all the meals are now booked on site and the itinerary is done (trust me 9 of us we need one!) and passports being sent off for. We have even started the holiday clothes shop.  Although still stressing about paying it off , I have to believe that by hook or by crook I will do it, there is no way am disappointing those kids of mine!

 These are the liners for the new legs.  As you can see there are a screw/ratchet type of fitting and the liner its self are made of silicone type material.

My first Physio appointment is going to be this Thursday so hoping things go well.  Have been putting the legs on to try and get used to wearing them. As part of this been trying to stand at the table with them on to put pressure through them. I am a little concerned though as when I take the right one off there is some whitening on my scar that could be a pressure point .. guess we will have to wait and see.

The nerve damage is worse then it was and this causes a lot of problems during the day and at night I am finding it difficult to sleep with it.  Unfortunately they could only get me an appointment for mid July for the pain clinic.  Having  tried all the usual suspects it is time to move on to the big boys of drugs as well as alternative procedures that may be available to me.  These might include having something placed into my spine to release chemicals into my spine to block the pain / messages. Not so convinced with that one though


Some good news though for a change.  Heard from the grant department at Motability and we have been awarded the full funding for a Ford Galaxy that  I should have new issues transferring into with or with out my legs. Down side?  Of course there is ....it wont be delivered until August this year.