Sunday 30 January 2011

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.......

Wednesday 26 January 2011

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

Monday 24 January 2011

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!!

Sunday 23 January 2011

You Tube

Well finally put a v log on you tube as requested hope some of you will take a look and even subscribe to it. I promise as I get used to it,I will get better !!

Any questions please feel free to ask and I will do my best to answer them on the V log or on here. http://www.youtube.com/user/TheVlogOfAnAmputee?feature=mhum

Saturday 22 January 2011

To live with an Amputation: some so good news some not so good news

To live with an Amputation: some so good news some not so good news: "Haven't had a good week of it with pain. Made the terrible mistake of running out of painkillers! As any person who has a medical issue will..."

some so good news some not so good news

Haven't had a good week of it with pain. Made the terrible mistake of running out of painkillers! As any person who has a medical issue will tell you its the last thing you want to happen. So as the week has progressed then the amount of pain killers in my system dwindled and by Wednesday I was fighting to stay mobile.Managed to get to work but by the Thursday it was a no go.The stumps could not take any more.I have also noticed that the abrasion's on my knees seem to be getting worse which is now causing major issues for the  wearing of the legs. Wonder if other amputees suffer from something like this? Using E45 cream to help it .
this is the state of my knees been using E45
On the positive side I have an appointment with my Doctors on Monday for pain killers. I have also been told that I may qualify for free gym classes and diet classes through my doctors to help me.Got weighed again this week and have only lost a pound ( although probably put that back on now) but have lost 5% body fat which am happy with.

David is going to do some more photos of my legs and stumps before I go into hospital to record the shape etc as trying to think back now before the last amputation I can barley remember what it was like with my feet,which as weird as it sounds is sad.

Also starting the whole "YouTube" channel as well so will post a link to that when done as more useful information links that I come across. I have also included today some close up of my stumps current scars as requested.They show scaring from previous operations I had due to the Disability and you can see why they don't really work for walking on or weight bearing with out the legs.


these photos show my right stump. You can see the scars from previous operations as well as a pressure point/ lump I seem to have


these images or of my left stump

Wednesday 19 January 2011

Its Arrived

Well it arrived this morning. The dreaded appointment  to see the surgeon. This appointment will be to plan out the amputation and the after care. Things that I will be looking at and discussing with him will be ;
length of time in hospital?
how long between operation and getting new legs?
what can I expect?
How long will I be off work?
What are the risks?

And the big one....when will I be brought in to have it done?

As am getting both done together and with it beginning a below the knee it could mean a longer stay in hospital.
Unlike the last time if offered the choice I think this time I will stay awake, mainly out of curiosity.

Its came as a shock as I was not expecting an appointment this soon after seeing them at the Freeman's.So mixed feelings at the moment......

Appointment is the 3rd of  February.

Also if its  of interest to any one been asked by many people to start a Video blog. Will be starting this on Saturday hopefully .

Sunday 16 January 2011

after the Freemans...whats next?

Doing well with the change in eating . Trying not to think of it like a diet because I never get very far on those and they seem drastic. Having my last blow out before i really need to get serious with this as it was my daughters 12th birthday so took her away on a shopping trip over night. Now its back to reality and digesting what as been discussed at the Freeman.

Saw a vascular surgeon, prosthetic fitter and the physio all in one meeting. They ran through the reasons for my re amputation ,which are wanting to keep working, staying active for the kids,and staying mobile and hopefully if not pain free then better then what i have at the moment.. They looked at other options such as new prosthesis, or even using a pain clinic but new legs/feet wont help the pain and as for the pain clinic the options aren't good. Once they realised that i had a sensible head on my shoulders and i knew what i was talking about they agreed that the amputation below knee was the best option although not to be taken lightly. They had a first wanted me to do one leg at a time, but as i pointed out that was no good to me with having the little ones around and a job. So after more talk it was agreed that both together would be the best.

Saying that though there is a 50/50 chance that it wouldn't work.

so choices are:

Give up work, lead a more sedentary lifestyle and take DF118s,codeine or stronger permanently therefore being permanent space cadet.

Don't take the mind altering drugs, go into a wheelchair ,give up work and lead a more sedentary life style

have the amputation and take the risk.

The risks are:

not loosing enough weight to be able to use them
hip,back and knees being too far gone for them to make a difference or indeed to enable me to walk
lived with pain for so long now that its ingrained on my psychic and afterwards its became phantom pain there fore still suffering and still end up in a wheelchair and no better off
stumps don't heal properly or get infected
not enough strength to lift the legs


Am looking at a long rehab after this and a lot of hard work. Need to sort out a strict meal plan I can stick too and an exercise programme it has been suggested that I use Palaties to build up my  core strength also need upper body strength and my quads built up as well.

so a lot of hard work ahead.
watch this space.

Tuesday 11 January 2011

weight and diet

well its done. Got weighed on Friday just gone and not as bad as I thought..bad enough but could have been worse.  17st 11lbs ! so I need to lose as much weight as possible before the amputation but my ideal weight is no heavier then 10st . I also need to start building up strength in my upper body because from what i understand am going to need more strength for transferring etc.

Going to start doing some research as well to find out what to expect although I must confess i have no idea what half the abbreviation's mean !

Should find out more on Thursday what to expect and should have an appointment to go see the consultant at the hospital again soon.

Nervous about Thursday already warned my work mates that I may be in a bad mood or at least a bit of a grump when i get in to work. not only will i have had to try and explain what am feeling and what the pain feels like, but am also going to be prodded and poked when am already in pain.

I really don't know how to explain the pain to you. Imagine that you have sat in one place for far too long and you have the worst case of pins and needles in your feet. then imagine that there are shooting pains racing up your foot and leg that feels like your being stabbed over and over again ,on top of the pins and needles, with cold ice. Then when you try to walk on top of this you get white hot pain searing through your feet and it feels like your wearing a pair of shoes too tight that if you could just sit down and take them off it would help the pain..only its not shoes but your skin that feels too tight and you have an elastic band tied around your stump, cutting off the circulation...well that's what it feels like for me 24/7, even at rest and in bed. sometimes having the legs off and laying with my legs up helps, but some times when i have had a really busy day with the kids,housework and work, my stumps and legs jump and go into spasms.

You can throw in the knee aches and hip pain as well as lower back pain on top of this . That's the best I can do to describe it. Will up date on or after Thursday

Tuesday 4 January 2011

Back To Reality

Well first day back to work and lucky for me no snow as that causes major issues for my walking. Changed shoes in the hope that it will help my walking as the legs I have at the moment are rigid. that is to say that the foot has no flexibility at all. So what is a unnotacable incline for most people can feel like climbing a steep hill.
Didnt sleep well cold effecting all my joints so breakfast included strong painkillers. But 3 out of 6 kids back to school today and house work done so getting ready for work now. Thought i was going to have a relapse on the pringle front but didnt..3 days without if i make it through the day and have also stopped drinking diet pepsi as well. Still not looking forward to getting weighed on friday
.http://www.bbc.co.uk/health/physical_health/conditions/talipes2.shtml
http://en.wikipedia.org/wiki/Club_foot

these links explain about the condition I was born with. Although in 1969 there was less aware so as well as the stints at night I endured multiple operations through out my life. Just to be straight about this Talipies dose not always end In amputation.

http://medical-dictionary.thefreedictionary.com/Syme's+amputation
http://www.gentili.net/amputations/SYMES.HTM


The two above links explain more about Symes amputation.

Monday 3 January 2011

HAPPY NEW YEAR

So am awaiting an appointment to see the consultant again so that we can plan the amputation. Going again for both legs at the same time. Have an appointment on the 13th of this month with the Limb Center at the Freemans to discuss physo and legs. I need them to write to the surgeon to concur with the decissions for the amputation for some reason.
So in the meantime am trying my best to get fitter and lose weight..not easy am ADDICTED to pringles. I dont smoke or drink any more so thats not bad. Stopped using marge and buying coffees from starbucks on the way from the metro to work. Not on a diet so much as trying to eat better, hopefully it will help when i come to go back under the knife and with my rehab after. The surgeon reackons 3 month from going under to  back up and fully functional. At least I wont be stuck for fancy dress ideas if am ever invited to a party. If I get metal legs I could go as Robocop or even Terminator..well..just a thought......
Actually the thought of this one scars me and David even more, not sure why. I keep trying to imagine what its going to be like and how much different things are going to be..but I cant. I hope the doctor is right and it is only 3 month.Not looking forward to going back in that wheelchair and I want to be able to get back to work asap. Knocked the holiday to Florida on the head this year for Davids 30th as we have no idea when I will be going in , so unless I get/win a substancial amount of money where it enables us to go instantly,then it will be next year now. Hopefully though we will be able to get away for short breaks throughout the year with the kids which will make things easier on the kids.
Thats another thing. How do you tell your kids mammy is going in to get her legs chopped off?Not so bad with the oldest two but the others are too little. At the moment they accept that mammy has no feet and has to put them on but what happens when I go into hospital?
Guess that  will be another bridge to cross when I get to it. At the moment its waiting to see what they say on the 13th and trying to get healther and fitter . Going to get weighed on Friday as well so you may hear my screams.
My amputation about 3 years later

Learing to walk again


horrible really

they get covered in Nora Batty Tights so I cover them in Groovey socks
watch this space as they say.

Aftermath

So  to follow on from my shaky beginnings I had a Symes Amputation, which is a through foot or through ankle amputation. Simply put I have no feet.The amputation was named after the Doctor who invented the technique in Scotland.
It was difficult. I spent only a week in hospital but that was because am stubborn ! I used a wheelchair for a long time and didn't want to go out in it. I suppose it relates back to the whole feeling more disabled then I was before.I was suddenly conscious of my situation and went through bouts of depression and not wanting to leave the house. I had never had to rely on any one or anything else before!

I customised my chair
It took a lot longer then expected to get back on my feet (excuse the pun). I became pregnant with my 5th child Trinity which delayed things even longer and had to have heparin injections every day from 6 month to stop blood clots. Let me tell you being pregnant and in a wheelchair is a lot harder then you may think!
I shopped for my first shoes, ever, in my life  soon after that which was an experience and a half. Having the amputation first time around took a lot of my self confidence and self esteem so I piled on the weight through comfort eating. So that combined with no exercise and carrying baby weight my size ballooned. I then found out I was pregnant with my last child Toyah and had just started to walk again,getting out the house a little bit etc I was determined to remain on my own legs and not back in the wheelchair again during this pregnancy and that is just what I managed to do although I still had to have heparin injections from 6 months on.

This brings me up to date.......well almost..........I started back at work early 2010 part time which helped my confidence no end and my Independence as I use the metro rather then help that is available. I go shopping around the town although stairs are still an issue, so I use ramps and lifts instead and I do have to have plenty of rests. Exercise is a pain. Anything involving jumping is out..tried it cant, kicking..tried it nearly killed the 50 inch plasma TV and the hubby, kneeling ..no go cant get down on the floor let alone kneel in these false legs, or lifting legs high..restricted movement due to type of prosthetic as it comes up to my knee.
I have been out clubbing once..nearly killed my self..but had a lot of fun, but still don't get out as often as I would like. I am always conscious more then ever of how to approach things and where I am going for access and can I get in/out etc.

Just before Xmas my GP referred me back to the hospital due to increasing pain in my lower back,hips and legs and the pain and numbness I feel in my stumps. The only way to describe it is like when you have lost the feeling in your hand or foot and you get really bad pins and needles...x10 and include white hot stabbing pain and the feeling of your skin being too tight and you come close !
Part of the reason for having the symes was over very short distances you should be able to walk on the end of the stumps with prosthesis..I cant..at all. So after speaking to the consultant who carried out the operation the first time a second amputation below the knee seems the  only option .

History

I mentioned to people that I would start keeping a blog to record everything on the run up to my re amputation.So where  to start? the beginning I guess. I was born with Congenital Bilateral Talipes of both feet and resulted in numerous amounts of operations and time in hospital. This intailed missing out on school a lot ,fun and building lasting friendships. It also entailed a lot of bullying,not being able to play sports and a feeling of being alone.School was DEFINITELY not my happiest days. I had to wear calipers when younger utill the age of 11 years old. The hospital moved me on to surgical boots made by Peacocks. My mam was a very special person as she never stopped me from attempting anything.In fact she encouraged me to be independent and try new things. Unfortunately what held me back the most was peoples attitudes towards me and my disability due to lack of understanding and fear. Aged 35 things took a turn for the worst and I had to go back to hospital to confer with a consultant.My mobility was starting to get worse and so was the pain. At that point I was given two choices,wheelchair or amputation.After a quiet word with Mr Jack Daniels and my family who Where Me David, Michael,Annabelle and Tyler we opted for the amputation.With in months of  this news we found out I was pregnant again with Eden so things where put on hold and 3 months after she was born I went in for the amputation called the Symes amputation, opting to have both feet done at the same time. Unfortunately at the time I didn't bother keeping a record of my thoughts,feelings or how it effected me and my family. In fact even though we had done as much research into it as we could we where still not prepared for what was to come or how it changed us. In fact dare  I say I felt more disabled afterwards then I had before.The world and society viewed things differently again. I wish I had kept some form of record back then hence starting this.


If you read this or indeed decided to follow my meanderings then hopefully it will give some insight into what its like to be different,a better understanding of disability's, or courage,comfort and support if it is something you or a family member are going through, have gone through or about to go through.