THINGS HAVE CHANGED

Things have not gone according to plan....at all !

Physiotherapy has and is being a slow process.  So far after 2 lessons a week over about 4 weeks all I have managed to do is stand for 35 seconds. The pain was so bad that we actually thought that the amputation had be carried out wrong which was a frighting thought.  I carried out some research and actually found out that the disability I was born with had a lot of other issues with it as well. To some degree this explained a lot for me and made sense of a lot of things in my life.  I also discovered what caused the disability and other issues that are linked that I was not aware of such as the curving of my bones and the deformity of my knee caps.
So armed with this new information off I went to see the Surgeon again.
After some X Rays and a consultation, it turns out that another amputation is not needed and the bones are not curved and luckily no bones sticking out either.

Even though am not happy with this, and it seems to negate the reason for the amputation, I have gone to the doctors and give in to get pain relief.  The doctor has given me Gabapentine and Naproxim .  The Gabapentine will hopefully block the messages from my brain to my stumps and I have to increase the dosage every couple of weeks until am on 900mg 3 times a day.  The Naproxim is for pain relief.  Theory is that after a couple of weeks the nerves will be deadened and any residue pain would be controlled.  This should enable me to stand and walk in my prosthetic s.

However the side effects are not great.  Not only am I trying to work and function stoned out of my mind, but I suffer dizziness, drowsiness, memory loss, mood swings and aggression as well as an increased appetite , just what I need when am battling with my weight!
After years of fighting against meds I have had to go down that road so am just hoping that it works.  My first Physio will be tomorrow when I have had a good chance to let the  medication take effect.

Every morning I get up at 5.30am and do my physio exercises, then I get up and put my legs on and do exercise with the legs on including tricep dips, pushing weight through the legs and leave them on for an hour so my stumps get used to wearing them, after this its off to work apart from a Monday when I go to physio then off to work. Its hard and I have to push myself but sometimes this is what you have to do isn't it?

Giant step for me

Well its been a roller coaster of a time recently.

Not sure if it has been mentioned earlier but my sister was taken in for an operation to remove a tumor from her brain, thankfully non cancerous, on top of that my eldest son has taken ill with problems with his kidneys, blood cells and low potassium.  Now this could be nothing just three separate things, but they could also be underlying problems of something a lot more serious so we are keeping our fingers crossed on that one!

On the back of this I have been to the limb center at the Freeman hospital for further fittings.  The liners are made of a silicone material and very strange to put on but once on feel like a second skin, you don't notice its on.
Went recently to try the finished product on with very disappointing results!! Tried to stand from the wheelchair and couldn't even put enough weight through the stumps to get out of the chair. I felt the fear creep over me, when after a further 3 attempts at getting out of the  wheelchair, I was  greeted with pain and failure.
By this point I was so upset and scared that my worst fears had came true and it had all been for nothing and i would not be able to wear the legs and walk.  Julie took me through to another room and we tried again from a raised seat and although I could stand from this I was unable to take much weight through the stumps and tried hard to take  few steps.  The pain was agony!! Julie told me to leave it as my ambulance was there and I refused. So I let the ambulance leave and for the next hour tried very hard to put weight through the stumps and to take a few steps. Eventually i manged to take a few steps, but only by taking 70% of the weight through my arms . As i spent the next 3 hours waiting for another ambulance to take me home and in immense pain I was left wondering if I would walk and what would happen.

In the mean time I have been back to work now for 2 weeks .  At first I felt like a fish out of water and very self conscious but my colleagues and friends have been brilliant and I am glad to be back , the only down side is trying to get help from the government.  In order to go to work I need to use a wheelchair adapted taxi otherwise I would not be able to get in to work. The government will provide this as long as I make a contribution, which is fair enough.  But this is where it stops being fair. My contribution is £130 a month, the extra I get for going back to work is £100 a month leaving a deficit for me of £30.So not only am i currently working for nothing but I am paying for the pleasure to go to work for nothing!  Just  another way the government fails the people,yet they are targeting disabled people on incapacity and DLA forcing them into work, punishing people on low incomes who are trying to make things better and provide for their families while people who are scamming the system, who don't want to work and are happy thinking they have right to chose not to work and be paid for it, get away scott free !!!!

Sorry......rant over...promise.

So this week went back to hospital expecting the worst.  Put the liners on, sat on the raised bed and put on the legs and my mind started racing!!! I reliased that if I thought about it too much it would be as bad as the last time so, putting it out of my mind just took a leap of faith (metaphorically) and went for it .  Pushing myself as much as I could I stood taking only 30% of the weight through my arms and walked! I got half way down the bars and started to feel my legs turn to jelly and my arms shake but was determined to make it to the end .  The bars seem to stretch on forever but got there but reliased that I had to turn around to go back !!! that was scary but made it and walked back although half way back I did think I was going to faint! Again I decided to push myself to the limits and did that another 2 times ! each time it got easier and in the end I was only putting about 5% of my weight through my arms and I was walking without faltering as much. So I was allowed to bring my legs home with me but not allowed to use them until I have the say so from physio but I dont mind .
I know I have a long way to go yet  and a lot of hard work ahead of me but it will be worth it .  I am looking at having the sockets spray painted and get some funky socks to cover the foot and Voila! a totally jen leg !

Now which way to the bar and who's coming clubbing.................?

THE WAITING GAME

Not been sleeping so well lately.  Stumps have started to ache and burn as well as the leg muscles jumping, but that is not the only thing that is concerning me at the moment....

Went for my first fittings last week.  The liners are like a second skin, they are how i would imagine a wet suite would feel and fit. Putting the first one on was fine just have to make sure the blue hard base with the screw on it is completely flat against my stump, otherwise if there is a pocket of air it could cause a blister by sucking one out ! ouch!!!!
However went to put the second one on and because we had to push the disc on to the end of the stump the roll the liner up, as soon as we started doing this, i nearly jumped out of my chair in pain.  The agony was unbearable but gritted my teeth and told the prosthetic fitter that every thing was ok, I was too scared that it would delay things again.  Now an sitting here worried that this might be a sign of problems to come. To make matters worse as you may remember just before i went in for the amputation I found out by accident that i had osteoarthritis in both hips,knees and in my back? well things are getting steadily worse.
Now it doesn't matter how long am sitting for , where am sitting, laying down or if am laying on my back or sides am in so much pain...constantly.  Not just the areas mentioned above it has now spread to my shoulders, neck, elbows, wrists and fingers.

I am scared and am not afraid to admit it either. As this condition gets steadily worse it means that  pain killers are still going to be needed and my mobility will still be effected, so everything i have put myself through and put my family through is still going to be for nothing!!!!
What is even more frightening is if the initial pain of putting the liner on ,or worse still, being able to weight bear through the prosthetic on that side, is not possible, well that's the end to my dreams of being able to keep mobile for the kids and myself and  for once in my life to say good bye to pain, pain killers and being different.

Its also the end to my life long dream of being able to wear normal shoes like everyone else, to be able to buy any kind of shoe..hell to just be able to buy shoes!!
Looks life hasn't finished throwing me curved balls yet.

I think the light at the end of my tunnel just went out.........

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.....

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.........

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..............

Post op day 17

It's been 17 days now since the operation to remove both my lower legs.  The bandages are looking a little worse for wear and are starting to come apart, don't think there going to last much longer to be honest.  Good job the appointment came through for the hospital.  I have to attend Sunderland Royal on the 16th at the dressing room to have the bandages removed.  Finally I will get to see what the stumps look like and what the scars look like.  This will be the first hurdle for me, making sure the wounds are healing properly and the skin is knitting together and there is no infection. If everything is OK then I will be able to go to the limb centre to get fitted for new legs and the phsysio can begin.  At this point I have no idea if the staples/stitches are going to be removed.  I am worried that it might not be healing and I would assume that if there was some form of an infection that I would be aware  of this by now.

Adult services are coming out on Friday afternoon to asses any help I may be entitled too as well as looking into the direct payments which I will use to pay for taxis, as there is no way I can transfer into our 8 seater car as it is the size of the A Team Van !  Still waiting for the new claim pack from the DLA to arrive so I can re apply for care component, they have told me that it can take up to 2 weeks just for the claim pack to arrive, god knows how long it is going to take to assess.

The blues are starting to hit now and I am trying hard to keep looking to the future and positive side of things. It is strange to think that I was the type of person that was so used to never sitting down, not stopping or taking time out for myself. That is now causing issues for me as I find my self feeling restless, wondering if I have done the right thing, wishing things to hurry up.  I don't know how to relax any more. I don't exactly have a choice of positions to sit in either. If it's not propped up in bed, then its sitting with my legs straight out in front of me in the wheelchair, or sitting with my legs up on the couch. Each day is starting to become the same for me at the moment, with nothing just over the horizon to look forward to. I feel useless a lot of the time as well, watching the kids run around doing things for me in the house and David trying to manage whilst am stuck in this chair.  This is why I went for this operation I suppose, so at the end of the day this is only a short term thing and not for life which it could have so easily have been.
I have achieved a lot this week, trying to put a positive slant on the whole thing.  I have worked out how to use the downstairs toilet, wash my hair, get dressed on my own (well mostly still need the odd hand with certain things),shopping in Asda and Shopping in the Town.  My sleeping has gotten slightly better and don't need so many pillows now and have also managed to get onto my side for short periods of time. The muscles in the back of my legs are cramping all the time and it is not the stump end as such that is hurting but the back of the leg.  It is tender to the touch and what is left of the leg is going into spasms which hurts a lot.  David thinks that it could be the muscle that is no longer going to the calf and feet shrinking or wasting away, all I know is that it is bloody painful !

RADIO INTERVIEW

Here is the Radio interview from BBC Newcastle Breakfast show http://www.bbc.co.uk/iplayer/episode/p00gztqt/Alfie_and_Charlie_at_Breakfast_06_06_2011/

News item from the BBC

here is the interview from the BBC http://www.bbc.co.uk/news/uk-england-tyne-13672409

ITV News Link

if your interested here is the clip from the news last night on ITV http://www.itv.com/tynetees/detirmined-to-walk-again60752/

they think its all over now......part 3

It's 12 days since the operation and it feels as if it has been much longer!!

I should get the appointment for the hospital some time next week to attend the week after. Can't wait to see what it looks like under all that bandage, although some of it is coming off now and I can see some horrific bruising.

Feeling tired today and a little low but this is only natural considering what I have been through.  In fact I would worry more about the state of my mental health if I didn't feel a bit low at some point.  Spoke to the doctors regarding pain relief and was given a prescription for Tramadol which seems to work at lot better.  I am sick of being in the wheelchair already and feel very restless to say the least.  Not used to having so much free time on my hands .  Sorry to say am even getting bored of Facebook !  Some days I feel that it is just too much effort to transfer and other days it doesn't bother me as it seems to be second nature, today however is one of those "too much effort " days.

I know I need to take it easy and if I was talking to some one else I would tell them not to be in a rush with everything, too enjoy the time off they had and to make the most of it , unfortunately I am not very good at taking my own advice.  The kids are coping very well considering and the oldest two are amazing they are doing everything I ask and more.  David is a special kind of man as well.  He has taken everything in his stride and not once has he uttered a word of complaint.  I have to admit there is not many blokes in this world who would willingly take on this type of responsibility and shine, but David does and am lucky to have him.  My ex husband baulked at the thought of me going through a operation some years ago and it didn't involve half of what am going through now and that was with one kid !!

My 5 year old is acting out at the moment and I think it is to do with the amputation. All am trying to do is look forward to the future with my family.  But on a lighter note.....I am being interviewed for BBC Newcastle  radio on Monday morning LIVE ! now how funny is that going to be 8am, school run. 6 kids, Monday morning....mmmmm. Also on Monday we are being interviewed for the News again,

What a media whore I am !!

Mum vows to walk again after choosing to have both legs amputated - Local - Sunderland Echo

Mum vows to walk again after choosing to have both legs amputated - Local - Sunderland Echo

part 2

It is now 8 days since the amputation and every day gets a little better.

I am trying to set goals for everyday, nothing major just little things. Such as getting ready, using the commode in over the toilet, washing my hair, getting some sleep, staying in the wheelchair for so long etc.

So far so good ! this morning I have managed to do my excersises, get clothes on , have a bed bath (this sucks btw) and wash my hair.

I am slightly concerned though as my left stump seems to be more swollen then the right . However this may be nothing but there is no point going to the GP as they will just refer me back to the surgeon anyway, and the appointment should be through soon. Really don't know what to do for the best on this one.

Spoke to the GP today and have sorted out my sick note and some stronger meds.  He is given me a prescription for Tramadol so fingers crossed it will help control the pain and I will only need them for  a short period of time. Have also spoke to Sunderland Council concerning direct payments and assessment for help in the house so they are getting a duty social worker to ring me on Thursday to assess the help I need and equipment I may need.  Although it is mind boggling to know how they will assess me for the equipment over the phone?

I have also spoke to the DLA concerning my care needs now and they are sending out a pack for me to claim higher rate care. Starting to notice that my fitness levels are increasing which is good, transferring doesn't seem such an ordeal any more but is still very exhausting. Getting used to walking up the bed with my bum to sit upright in the mornings as am having to use 4 large cushions off the couch to enable me to sleep on a night ( this means I can sleep slightly propped up in bed, stops my back from hurting too much, still not ideal).

My aim is too get back to work, from home, by the end of June. Actually getting into the office may not happen until the end of September or later. I am also hoping to restart the OU work I was doing over the summer, but just to stop me going crazy am trying to promote my husbands business through social media, marketing and PR.

My goals for the rest of the week is paint nails tomorrow and get kids breakfast on my own, Thursday go to do my shop at Asda and Friday go to town with David to pay bills and do some shopping.  At some point I want to go to the pictures as well and save up for a shopping trip to the Metro Centre, but these are things to look forward too.

Remember there is always some one worse then you in the world, stay positive and take little steps/set little goals. 

they think its all over now......

Well am now 5 days post operation.

Went in on the morning of Monday 23rd May. By 10.30am I was sitting in theatre being prepared for a spinal block with sedation.They have changed the system a lot since the last time I was in for an amputation.  This time I had to report to the day unit.  Of course this was me and easier said then done. You would have thought that the receptionist in the main part of the hospital would know where this was...ooh no !!

so after 45 mins of running all over the hospital we finally found where we needed to be. David wasn't allowed to stay with me which upset me as the last time he was able to walk with me to theatre. From the day unit I was taking to another waiting room upstairs with lots of other nervous looking people all with over night bags. After about 5 mins I was then taking around the corner to a ward area where all the forms where gone through and they checked what time I had last eaten and drank as well as making sure that I had removed all jewellery, make up and nail varnish.  After  this I was then moved to a single room on my own containing a toilet and a telly.  Here I met the anaesthetist who discussed how things where going to be done.  although it had been decided to go with  a general anaesthetic we both agreed that if we could get away with it to go for a spinal block and heavy sedation.  The bed in ICU was booked as a precaution just in case we had to rethink things half way through. I was then presented with a wonderful looking hospital gown and green foam covers for my shoes.  At  this point my surgeon came in to discuss what was going to  take place.  Once he had finished discussing the operation he asked me if I had any other questions, all I could think of was I wanted a hat like his funky green one!! Bless him, I don't know who is dafter but he came and give me one just before surgery !!!

I had a lot of mixed feelings at this point and really wanted David to be there.  From this little room after 10 mins I was taken to what they referred to as the "holding bay". this was a waiting room that had once been a staff room by the looks of things right next door to the theatres themselves.  After a further 10 mins I was then met by some one else who went through my paper work again, drew arrows on my legs ( this never stops being a source of amusement to me ) and walked me to the theatre. I have to be honest the phrase that sprang to mind was 'dead man walking'.

There was no way out at this point and I tried very hard to stay positive and keep my sense of humour. To the  annoyance of most of the medical staff I think!  snippets included when one of the sensors fell off and the heart machine reacted, my comment was " omg I have flat-lined" and " look every one was right I don't have a heart".  My last thought as I went to sleep with the sedation was of my eldest doing 'graceful ballerina' if you ever meet him or get the  chance you will have to ask him about that lol.

The next thing am aware of as the sedation made me sleep all the way through was being woken in the recovery room at 3pm, too which i asked for another 5 minutes.  As they where assessing my pain I ended up in a conversation with the nurse regarding Camden market and the Mayfair as well as trying to convince one of the male nurses to do a McDonald run....I was starving. After 20 mins I was then transferred onto the ward  Where it was commented on how well I looked and how alert I was considering, all I cared about was when was tea.  Needless to say not long after that I was given roast pork mash and veg and was very happy.

The new stumps are all bandaged up with what is called compression bandages.  I have been told these need to stay on for 3 weeks.  Looking at my legs now they don't look that much different. The biggest shocker for me is being back in a wheelchair.  I forgot how much effort went into transferring and how much i depended on my lower limbs for simple things like moving up the bed or repositioning myself on the settee ( you try laying flat on your back and without using you're legs or feet move into a sitting position up the bed).

I have also discovered much to my dismay that I am extremely unfit! Couldn't get on line in the hospital so couldn't blog but as you have more then likely guessed it was boring. Spent the 5 days in there flat on my back not being able to get out of bed or even change position to sleep.  The pain killers slowly came down in strength until am now using paracetamol and codeine, but being honest I think they need to take a step back up as I am finding now that i am out of bed the pain has increased.  I started my physo on day 2 with knee exercises to try and stop my tendons from shortening or wasting away.  By day 4 I had moved on to leg raises and a bastardised version of Thai Chi.  I would have been out of hospital on day 3 but the hold up was waiting on my wheelchair from OT as i need one that is anti tipping with stump boards.

Between you and me am not coping very well.  I got no sleep last night ( first night at home) as i couldn't get comfortable in bed, the duvet seemed to heavy and my back hurt ( in hospital I had been sleeping at a slight angle) transferring was a pain in and out of it so i spent most of the night in tears. And that has continued mostly on and off during today, my first full day at home and I have been in tears at least 4 times for various reasons, pain, frustration and temper being the prime ones.  Although saying that transffering is getting easier or so it seems and i have not felt sorry for my self ......yet......lets see what tomorrow brings eh?

2 days to go

well its the early hours of Saturday morning and its my birthday.

so apart from the world coming to an end what else is happening? I hear you shout!

Well Its only 2 more sleeps before I go into hospital and I am petrified!!  Still doing the decolonistion thingy and now have started the hormone tablets as well. Everything bought in for the hospital just need a dongle now which david is going to get for me later on as for the first few days I will more then likely not know who I am never mind where I am.

Its Jennifers getting leg less party tonight, but really don't feel in the mood any more.  David reckons I will be fine and that I have just got myself a little wound up and a little down about going in on Monday.  Hes probably right.

Rang the hospital tonight to confirm everything and my admission time on Monday, its all in place and I am a morning admission 8am so I wont even get to see the kids off to school.

That's something else that is killing me as well, leaving the kids mainly the younger ones to be honest.  Eden who is 5 had me blaring my eyes out yesterday. She has been acting out lately and we think it is linked to me going into hospital. I pulled her to one side and told her that I needed her to be strong as she would have to supervise the eldest two and help daddy whilst I was in hospital.  She started to get teary eyed then her lip wobbled and she burs in to floods of tears !!
"mammy please don't go into hospital, I don't want you to go into hospital" I tried to explain to her whilst trying to hold back floods of tears my  self , telling her that I could do a lot more things with her once I  had new legs to which she replied that I didn't need new legs and it was alright I could just sit in my wheelchair as daddy would push me and I could sit and watch her play in the park! - what do you say to that?

That really hit me where it hurt!

Update

well mixed feelings and emotions right now.  Started the decolonisation today so that has brought things home to me a bit more. What a carry on though.

Had a shower using the sterile lints.  Then had to put this foam on my body and my hair.  I have to do that  every morning now until I go in on Monday. Then it was the mouthwash, it was disgusting!! I have to gargle with this twice a day. Next was the turn of the nasal gel, now that was interesting.   3 times a day I have to put a dollop into each nostril  and pinch my nose together.  All this together should help to prevent me catching or kill any germs I could be  carrying of  MRSA when I have my operation.

I have also had Social Services on from the hospital checking on equipment that I will need for coming home.  This is a change as the last time we heard nothing from them and where left to sort everything out ourselves.  This involved fighting with the social services and OT to get the equipment we needed. The wheelchair with stump boards being the  hardest to get a hold of. At least this time we will have the wheelchair for me going into hospital or at least a couple of days after.  This fills me with more confidence then it did the last time.

Mood wise? I don't know really. I feel that I should be stressing or something but am not.  Maybe I am on the inside because I have noticed that this week I have become short tempered and I get irritable quicker. My patients seems to be none existing. But in my head I feel all non pulsed about it. Bizarre.

Trying to keep myself busy I have been trying to market David's Photography business.  And I have to dye his hair.  Not to be left out he is having a very good friend of ours dread his hair to look like Sephiroth!
To top all of this off there is the infamous "Jennifer getting legless party " on Saturday to celebrate my forth coming amputation and birthday.

Today I feel kind of flat.  I have tried to stay motivated and happy but the day has conspired against me am afraid and all I feel now is low, grumpy and bad tempered.

Can you believe it !!

Well here I am again and its one week to go!

Been to the hospital for my pre assessment and I think everything has went OK although I still have to have my ECG done. I have been prodded and poked all over, and swaps taken in places that no one should have a swap shoved !! But at least I know they are being thorough, it gives me some peace of mind.  When I was in nearly 5 years ago it was no where near as thorough. Some one took one vial of blood, they asked if you where on any medication and  they weighed you and took your blood pressure, then that was it .

Been told to stop taking the Vitamin's as the one to help my immune system and the one for the Arthritis in the knees as they cause issues with the anesthetic.  Also as from Wednesday I have to de contaminise my self its called skin decolonisation. Basically I have to have a shower every day for 5 days using this special shower gel that is also used on the hair, I have sterile individually wrapped clothes to use, mouth wash I have to use 3 times a day and nasal drops/spray that I have to squirt up my nose 3 times a day. lovely!I have also been advised that I will be in ICU for a couple of days after the operation as well.

I have to be honest and tell you that am now starting to get nervous.  I suppose its only natural, after all am only human (unless you are my kids who don't think so).  I miss work as sad as that sounds and am scared of how much things are going to change for me. The amount of time I will have off means that work will have changed as I will be out of the loop for so long. Things I do now and take for granted now will change again, socially things will change again there as I will have to build up my confidence all over again not to mention learning to walk again.

At the moment when I think about it and about the fact that it is only a week away, I get that knotted feeling in my stomach, that goes along with the butterflies you sometimes get.  I am going to try to fit a V log in soon and the morning of the operation before I leave am hoping to be able to sit here and let you know first hand what is going through my mind, am also planning a V log before I leave for the hospital and if possible one from the hospital.

On a lighter note some of you may be aware that I am now sporting a rather snazzy head full of colorful dreads . I cant wait to see the nursing staffs faces not to mention the doctors lol

3 weeks to go and who's counting?

Sorry its been a while since I have actualy wrote anything but it has bee such a busy time for me lately.

I have been trying to tie all the lose ends up at where I work so that I could hand my clients files over. My last day was Thursday and I am now on holiday for 2 weeks until the operation on the 23rd.
However the  holiday isnt really happening. David took on a business unit for a portrait studio, so I have been helping him to market that place and set everything up so that it will run smoothly for him whilest am in hospital.  To say things have been manic is a understatement!! I had more sleep with 6 kids when they where teething then I have had in the last two weeks with this!
However saying that we have had some lucky breaks. David as done some thrash metal bands one local and one from Boston USA at and inside the Newcastle keep. They have been so impressed with his work that they are talking about using some of it for their next album cover. I was just happy I pulled off geting them inside the keep.
I also managed to get him as Outlast TheSun's official gig Photographer as they are performing one night only as Stiletto to support Tigertailz at the O2 Academy this month. So have also asked if it would be possible to photograph Tigertailz as well. They told me that they didnt see why not and to speak to the tour manager on the day !! so really happy about that as well. Still trying to get him in to do a shoot with Adam Ant but no joy...yet .

So because am busy I havnt had time to think about the upcoming operation. But now as it draws nearer I must admit when I do stop to think about it,like now when am writting this, I feel a little tripidation about it. Nerves I guess.
I allready feel wrong not being at work.
I have already started to pack my bag bit by bit. Buyin new Pjs and tolitries,books etc and putting them in my hospital bag ready. Still dont know what the hospital policy is on me taking my laptop in with a dongle so I can use the internet and Skype?
I plan to update this on a other day or daily basis as I get nearer to the date as well as keeping it going all the way through my hospital stay. I guess I want people to read this and take comfort, hope,inspiration and help from it, for people to understand what it is like to live day to day with this and for other people who may be disabled to be able to say "well if she can do it so can I"
I am lucky to have such a fantastic network of physical and on line friends ( you know who you are!), thank you all of you and a fantastic husband and kids which has enabled me to do what I do and has helped me to get over the bumps in the road.
My operation pre assesment is on Tuesday at 4pm, am sitting here thinking that the carefully planed diet and exercise programme didnt 'quite' work ! and am wondering how much weight I can lose in  a few days !!!
ooh well at least I am trying , and still trying, to lose weight.  It might not be a roaring success but I will fight the good fight. Hey at least I dont eat Pringles any more......just lots of other things instead.

next V Log up and running

http://www.youtube.com/watch?v=GSeiKlsSOUY

PREPERATION

So how do you prepare for something like getting your legs chopped off? I have no idea!

Depression hit me really bad over the last few weeks, things basically just getting on top of me and all the little things seemed to be a lot worse then they actually where.  None of it stemmed directly from going in for the amputation, but I suppose it influenced them in directly. Its hard to plan ahead for after something like this and I was trying to put things in place for after it had all happened which you really cant do because you can not predict how things are going to go or turn out.
I wanted to have something to look forward too but until I return to work , which obviously I don't know when that will be, I cant book anything for holidays as we don't know how finances are going to work out or even if the dates we book are going to be realistic for my rehab.
So after lots of talking things through with David, who is being very supported, I have managed to put things into perspective.  The major issue is money & work. That is the base of the matter.So trying to tackle those two things head on . Kind of got them sorted. Have put holidays into work 2 weeks before I go into hospital so I can have some time with the family.  Starting to tie things up at work ready for going in, but this is creating a lot of pressure because as well as tieing things up I still need to do the job am being paid for. I now know that my employer will pay SSP while am on the sick but that isn't a lot to live on, so its a case of tightening the belts until I can work again. Hope fully this will be within a month working from home to start with until I feel confident enough to go into the office in my chair through using access to work. Eventually going in full time under my own steam when am up and about properly but who knows when that will be ?
Also starting getting things in for my hospital bag, putting things away ready to pack.  What kind of PJs do you get for an amputation? long legs are not going to work.  Nightie? shorts? opted for one nightie and some PJ shorts. Hoping to take the laptop in with me and put some credit on a Dongle as well so I have access to the internet, don't want to pay for the service in the hospital.
Taking lots of books, puzzle books and DVDs in with me as well . Not forgetting the music! Also going to use this as an time to take back up my Spanish and Psychology studies.
So as you can see lots of things  to sort out and do before hand as well as making time for the family, work and easter!
Still cracking on with the exercise but the not able to do the pilates as often as i would like. Still struggling with the weight,uurrggh!!
David is taking some more pics of my legs and stumps before I go in so looking forward to that. Hey at least I dont have to worry about having to get a pair of slippers ! I think the after care in the hospital is worrying me more then the operation itself which I know is strange but its from what I experienced before. Best advice i can give to any one who is going through something like this is plan as much before you go in as you can and talk to some one , especially if you feel that things are getting on top of you . Talking and planning these things will also help you to prepare mentally for the operation. Also dont worry getting down is going to happen, it wouldnt be normal if it didnt. Plan ahead for after the operation as well but unlike me try to be realistic about this, things will change as you recover and you cant predict what is going to happen or how quick !

Incompetent?

Well went to the doctors regarding the arthritis issue. My biggest concern is whether or not it will impact me having a BKA. He didnt have a clue. In fact the whole appointment was a waste of both his and my time.
All he wanted to concentrate on was me having the amputation and if I was doing the right thing. According to him am walking fine ( this judged from the short walk from the waiting room to his office,whilst he sat in is office, with the door closed therefore COULDN'T SEE !!!!) According to him my mobility,based on what he saw?!? I seem to have no issue with my mobility. so I tried to explain to him that the mobility issue was only part of the problem , that it takes more then a 30sec walk to his office after sitting down for 20 mins resting to be able to see if my mobility is ok,and that other issues where involved such as pain,nerve damage,swelling and not being able to weight bear.
So I mentioned to him about the fall and what we discovered and he just sat there and looked at me. Ignored what I said about osteo arthritis and starting going on about how he doesnt think he needs to test me for Rheumatoid arthritis. His way of knowing  this was to get me to hold out my hands and turn them over. I tried to explain to him about the pains in my elbows after excersise or lifting anything,carrying anything or at the end of the day. This is the same with my hands. Not to mention the fact that at I sometimes drop things because I lose my grip or I cant grip. Never mind the  fact that at bed time the pain in my muscles when they cramp or jump or the sound of the bones "crunching" in my fingers or wrists.
I wanted to talk to him about my concerns about the amputation, the effect the arthritis in the hips, knees and spine would have, could I find out how bad it is? Would this stop me from having the amputation? are certain things am doing causing issues or impounding this problem possibly making them deteriorate? Or are there things that am not doing that is making it worse?The ERTL (have i got that the right way round?) procedure and how the surgeon am under doesnt use it and of course the depression that seems to be spiralling out of control.
No instead I got a brief 5 minute appointment, told he didnt see why I was having the amputation and he didnt think I should go ahead with it, and I didnt have rheumatiod  arthritis and didnt think i needed testing.

God bless this wonderful nation and its Victorian NHS system. where the GPs dont have the training they need, cant speak expectable English,dont have the time to spend with their patients or the money to refer patients if necessary and its in patients best interest.

So unfortunately in this great nation of ours its a postcode lottery the type of GP service you are provided with, and I am in the wrong postcode.

..and so it keeps going..

sill waiting for the official letter from the hospital with the date of my surgery on, but his secretary confirmed over the phone.  Heard from social services but they cant do anything until after I have had my amputation, so cant arrange what I need wheelchair wise or bathing needs wise until am in hospital, which if you ask me is useless.  Work not getting any easier. Walking up the hill to work is causing a lot of pain and cant afford to take time off work as if I am not in I don't get paid. We must be the only firm in Newcastle who doesn't have a sick scheme in place! The carers centre has been great, they have had a lot of useful information that both David and I where unaware of.  Now wondering how much my arthritis issue is going to effect my amputation if at all. So off to see the doctor on Tuesday morning to get the low down on it all.

Managed to do some research on arthritis and on depression over the weekend, even though it has been complete and utter madness with the eldest 17th and the 2nd oldest girl turning 5. Turned out that the 5 year olds birthday party caused more stress and clean up then the 17/18  year old had the night before !

Went to get weighed on Friday and another blow to the self confidence..put on weight and back at what I started at 17st 11. sometimes I wonder "why do I bother " and "there has to be more to life then this ?"
Seems I suck at everything..well if nothing else am consistent, thats something.  Lots of friends seem to think that I should either leave work or go on the sick now. Thats easier said then done, as I mentioned before, the firm I work for must be the only one in the North East that doesn't have a sick scheme in place. Which logically is good to stop people form taking the piss, people like myself cant afford to be off work if we dont get paid though. So for now I will just have to battle on like thousands of other people in the same situation.

Feeling Flat

Got the letter on Tuesday from the hospital for a date to go into the pre assessment clinic for the operation. Decided to give the surgeons secretary a ring on the off chance she would know how long it would be after that I would be called in. she had the date ready 23rd May, 2 days after my birthday!!! what a present!!

My stomach sank and my heart raced and I felt like crying. It is a relief to have the date but also upsetting. Felt angry and tearful, all at the same time.  I suppose at least now I know when am going in and I can start to prepare for it , better then constantly dreading the sound of the letter box going every morning.

Having the date hasn't made me less stressy or short tempered though.  I am finding that I have very little patience for anything, especially the small stuff, it all seems pointless.  The spiralling depths of depression are calling to me, I recognise the symptoms, and am trying despretatley not to get pulled down, but it seems that am swimming against the tide.Lethargic, just want to sleep/stay in bed all the time, comfort eating,cant be bothered with anything or anyone come to that,It all seems so pointless.

But I have to keep looking on the bright side and remember why am having this done, how much better my life will be and the lives of my family. you can imagine that getting ready to go to work is something I have to kick my own arse to do everyday.  Still plodding along with the Thia Chi and Pilaties going to get weighed tomorrow but not holding my breath. Work been messing around with my hours, so still haven't managed to get to slimming world yet.
Yesterday however in the rain and mist was going through the entrance to Park Lane metro reading the "caution slippery when wet" sign then hit the floor!! went straight down !! how stupid did I feel.
Ended up in A&E  and after extensive X Rays discovered that nothing was broken but I have Osteoarthritis in both hips and my spine...could it get any worse? Sometimes I just feel that its not worth it and why should I bother.? No matter how hard I try or what I do nothing works out the way I want it too and I get no further forward.
Other people seem to get what they want, very easily, without much effort it seems at times. Not having to suffer much or do with out. Then there's me....hip replacements waiting in the not so distant future, further mobility issues to battle to stay out off a wheelchair, which might happen anyway no matter how hard I fight it .Pain from the day I was born.  Never made much of her self.  No further forward in life.

Yes am feeling sorry for myself, am allowed after all am only human......well for now.....

‘I’ll use my legs then lose them’ - Local - Sunderland Echo

‘I’ll use my legs then lose them’ - Local - Sunderland Echo

The week that was

What a whirlwind of a week it has been! starting last Friday with BBC look north contacting me  so they could do some news coverage, then signed with North East Press so they could look at a publication deal this resulted in Pick me up wanting to do a follow up on the story. This has also resulted in me being in the Sunderland local paper as well,

In between all of this have tried to live a normal day to day existence. Nothing been sorted at work yet so still no idea what is happening regarding me training some one else up or the VPN network being set up so that I can work from home afterwards. Still nothing on the sick pay side either . Although getting to work Thursday was very interesting with the amount of pain I was in ,now you are probably wondering why I went to work if the pain was that bad, I know David was LOL. It was all self inflicted . Had the day off for Davids birthday on Wednesday and Paul looked after the kids for us (well more like the little ones nearly finished him off and the eldest looked after him ) so that we could have a kid free day out to Newcastle shopping. First time in 7 years we have been able to do this !!
Had a great time even discovered a way of tackling escalators for the first time, makes life so much easier then using the lifts let me tell you, although David had to steady me getting on and off and still haven't worked out going down on the damn things, knowing my luck I will just have it sorted in time for the legs to come off !!
The moral of the story was I over did it a tad with the walking and standing and by the time we sat down to eat at tea time I wasn't sure if I would be able to get up again . The pain was intense!! the heel pad on my left stump felt like it was in fire as every time I tried to put weight down on it it felt like it was bathed in fire and the worse thing was  I  hadn't took out any painkillers and had to stand on the Metro home. Not one person would make eye contact with me or give me a seat even though my prosthetics where on show...charming or what.
The upshot was come Thursday morning I couldn't walk but couldn't afford to take the time off work and we where on a deadline with the new leads we had so had to painkiller up and take my elbow crutches with me I was an hour late and what would normally be a 10 min walk for me (everyone else 3 mins), ended up being a 20 min shuffle like the living dead up Granger Street.

Vouchers turned up for "fat" club so hoping I can get there on Thursday, Pilate's and Thia Chi going well and its starting to get easier as well, not looking so much like a beached whale any more when trying to do it but still looking like a fish when I  am floundering  around on the bed trying to get up. Weight loss not so well 17st 10 but the body fat has dropped considerably  to 45.7% so yeah me !!! Starting to fit into clothes that I havnt been able to wear in a while.

Still nothing from the hospital. Thinking of ringing the secretary to see if she can tell me anything. Really starting to get down about it all now, finding it hard to stay positive and look on the bright side.  There seems to be no light at the end of the tunnel.  David is staying up beat, keeps telling me to look at how well am doing with the exercise and how much of an inspiration I am to other people in the same situation, how we are keeping our head above water and how much good am doing for amputees in helping other people understand.  Which is good, but wheres my light at the end of the tunnel?
Need to sort something out to look forward too, before the "blues" that I have now spiral out of control and end up in full blown depression.  The comfort eating , or wanting too is killing me and finding it hard not to succumb every two minutes !! The temper is starting to get shorter which is not good as am finding my self taking it out on the kids and David, which isn't fair as the kids not only dont deserve it but dont understand why mam is like that..
Taking all the vitamins just hope there doing some good .  On Sea Kelp for the Thyroid, Omega 3 for skin hair nails ,Echinacea Root for my immune system (trying to build it up before I go in ) and Glucosamine Sulphate for my joints..
Knee abrasions are getting worse using E45 on them but not very effective so need to look into finding something else that works. David thinks that when the appointment comes through we should contact some one and see if any one wants to do a documentary on the amputation its self...would any one even be interested??
Just wish the damn thing would come....

Another Week

well its the start of another week and still waiting for the letter to come through from the hospital.  Trying to put it out of my mind but that isn't happening . I can feel the tension rise everyday, and my temper is getting shorter and shorter. Waiting for the vouchers from slimming world so haven't been to "fat club" yet, but the fight with the food especially the pringles goes on .  As you probably know by now been on our local news so all good to get the word out there for all amputees to be heard

Had North East Press sign me to a contract to see if any publications want the story. the log on you tube is doing well and have a few followers there so hopefully that will help the cause as well.Have been asked to do one on stump care which will be the focus of my next one.

Work is going well but not heard back from my boss yet regarding the sick pay or time. Still working  hard on the pilates but nothing happening yet bar sore muscles.

BBC Look North

Here is the clip from last night when we appeared on our local news .
http://www.youtube.com/watch?v=x7Dd0-Zttds

Trying Hard

No body probably reads these but its good for me to be able to put this out there just in case some day some one needs help and doesn't know where  to look..

Still nothing from the hospital.Still dreading the sound of the letter box in the morning. Started doing Thia Chi every morning, leg lifts,free weights and pilates every other day. Boy not that I could do much of the excersises but what i did do has left me sore and for  45 minute routine it feels like i have done a 3 hour intense gym session !! Also started trying to use the stairs at work.So far i walk up one flight and when i finish down one flight Have started  taking vitamins. something for my immune system,something for keeping  the joints supple,omega 3,and sea kelp for my blood and thyroid.

Changed the eating patterns although not doing so well saying no to the pringles. But trying to watch the calories in everything i eat and off to slimming world tomorrow with Katy so a weigh in. Must be doing some good as the blokes at work they have mentioned that i  look as if am slimming down.

Need to get the district nurse with regards to getting referred for  equipment for after the operation. On a positive note the health visitor has referred Toyah to nursery so just waiting for that to come through.

I swear its as if the stumps know there going to get cut off !! had a bad week with pain levels.so been hammering the painkillers but going to try and ease up on them. Kind of got stuff sorted at work will be working at home when ready after the operation.
will be  doing the  vlog soon.

To live with an Amputation: This is my latest V log from the hospital appointm...

To live with an Amputation: This is my latest V log from the hospital appointm...: "This is my latest V log from the hospital appointment on Thursday. Getting more things put in place today regarding the hospital appointment..."

This is my latest V log from the hospital appointment on Thursday. Getting more things put in place today regarding the hospital appointment. Jumping every time the post comes now. In a lot of pain today. Right stump feels swollen and leg too tight, Right knee also aching a lot.
http://www.youtube.com/watch?v=oditSLvmk7g

The Apointment

Well the appointment its self with the consultant was brief to say the least but the waiting around and getting x rays took longer. He has x rayed both legs and knees, nothing was said regarding and degrading of the knee joints. So assuming that this is a good sign the amputation will go ahead. Talked briefly with the consultant about the operation and what to expect,then signed the consent form. Couldn't stop my hand from shaking !!.
He didn't know what the ERTL procedure was but described how he was going to do it.It will be both legs together and he will be taking them 10cm from the knee joint.
He thinks it will be general anesthetic and ICU for maybe the first 24/48 hours. After that general ward I guess.
Pain relief after the operation will be down to the anesthetist but he thought I would be in hospital for at least  2 weeks. Again it will depend on how mobile I am and how soon.
The other factor is having my head in the right place after as well. 6 weeks after the stitches have been removed I should be fitted for my first prosthetics. He doesn't know if he will use staples or sutures  on the wounds yet.

Now the important bit..it will be early May or maybe even mid April when I go in..eek !!!!

So have started in earnest with the exercises. As well as doing the physio excesses for my legs ,I have also started to do Thai Chi and Pilate's .Also bought a dance keep fit DVD to have a go at..

I have been naughty this weekend and after Thursday have had a bit of a blow out but all said and done have lost another 1lb. Now down to 17st 9lb...but hopefully this will increase now that am trying more seriously.
Have spoke to OT and wheelchair services and apparently they cant access me for a different wheelchair or any aids until after the amputation..stupid really. So trying out my other wheelchair but no idea if its what I will need.
Need to start getting everything ready for the hospital ,the letter should come through at least 5 weeks before with the date and am speaking to work on Monday.They will take me in the morning of the operation but I wont be able to  speak to the anesthetist until the morning of the operation.
Have spoke to the health visitor regarding Toyah going to nursery ready for me going in and have also spoke to the DWP about money. Have also got an appointment with the GP regarding anything they can help with referrals etc. Writing to the kids schools to let them know what is going to happen and hopefully get there support ...although Edens and Tyler's school probably wont they still give us problems if I am having a bad day with my legs and we run 5 Min's late with them. They have threatened to  start attendance procedures over this !!

ooh well let the countdown begin....

GETTING READY

well I go on Thursday to see the surgeon to find out what the plan is about the amputation. All I actually know is that it will be below the knee and both legs are to be amputated at the same time.So most of this week will be writing down questions to ask when I go as well as doing research on some of the links you have sent me.

I am getting really nervous now.Don't know how long I will have to wait before I get a date to go in, but getting emotional every time I think about it. One of the advantages of being married to a photographer is I am going to ask him to do some pictures of my legs and of me before the amputation.

After seeing the surgeon on Thursday I am hoping to have a time line at least so I can start getting more serious regarding the weight lose which is  going OK but could be better. I also need to get more active. The appointment is in the morning so already explained to work that I wont be in for that day as am expecting it to be quiet an emotional appointment as well.

Mental note to ones self: need to contact wheel chair services and OT on Friday as well.......

Things to Prepare

well now that the pain issue has  settled down I need to look towards what I need to do to get ready for the amputation.  At least this time am well prepared in knowledge but still need to do research into various things.I would recommend this for any one going through major surgery of any sort !

I need to contact Wheelchair services as the wheelchair I have may not be the right kind.Possibly a weighted wheelchair or a one with a deeper / longer seat may be required.
Another thing on my to do list is get in touch with OT (occupational Therapy).  They will need to come out and assess what if anything needs to be done around the house,We should be OK as all the doors are wide enough for the wheelchair and my bedroom and bathroom are down stairs.
The biggest thing I need to do now is lose the weight and build up the strength for my quads and upper body. Easier said then done!! I am trying to eat as healthy as possible but need to cut out my biggest evil which is the crisps.
Lets hope I can

Pain Relief

 Unfortunately they don't take the pain away but make it bearable for me to do what I need to do during the day,and to help if in pain on a evening to get some sleep. If I was to take anything stronger then I wouldn't be able to work as I would be living in cloud cuckoo land !! These painkillers are great if you are not working as they don't just make it bearable but you are totally pain free...then again your totally not living in reality either lol.

Starting to look for reasons why I shouldn't go ahead with this amputation. I am not afraid to admit that am Scared. But having looked at and ruled out other possibilities, it only leaves the amputation. Especially if I want to lead a normal, active lifestyle and still work. I guess the main reasons is having the actual operation, I have an allergic reaction to dying lol, and having to start over again, the impact on the family and the kids...that's just to name a few.

Anyway I digress ! The doctor has weighed me and am 17st 7lb and is referring me for weight loss and exercises on prescription..what ever that is only problem is we have no idea how long the waiting list is for either. So eating healthy and trying to get the right exercises programme for me is still the best. Going to look for a good palliates DVD on Friday as physio have recommended that type of exercises as the best.

I would like to say thank you to all of you who have given me advice and for showing your support for me during this time and also for your support with this blog and the Vlog. With out you guys I wouldn't know what I should be asking on the 3rd.
I just hope other people get some comfort and support from this and the YouTube thing,or at least a better understanding of living ,not just with an amputation, but a disability in general.with my unique twist on things I am hoping to show people that its not all doom and gloom, that its your perspective on it and how you live your life with it that counts, and of course that no matter what or who you are you can do and be anything you want!!