New shoe

It was time for my foot check up well orthopaedic appointment hoping my new shoes were here well other wise it would be a pointless appointment. I was shouted in by My doctor I was allowed to wear my right show and right only :( however it's a start. The shoes weren't as bad as I was expecting them to be they were black with like a puma stripe on the side made out of soft leather but were more like trainers then shoes. And they are the comfiest shoe I have ever worn I was allowed to wear it for 20mins a day and when walking but only around the house other wise it's the wheelchair still. If I'm seated them it has to come off this is to stop it swelling although some swelling is normal. At my next foot check up if my foot is the same temperature as it was before the shoe and if not swollen I will be able to drive an automatic car (how exciting bearing in mind I've never driven an automatic so that will be interesting). My left foot is still in an air cast 23hrs a day boo! However my last scan said it is healing and new bone is growing I have another scan in 6 weeks time I'm really hoping it will be healed by then and be able to wear my other shoe and begin weight bearing on that one too. It's so nice to have flexibility it my right foot specially as it's been in cast for the last 5 months and I can sit half comfy and it's so much lighter and also wonderful not to have to pump it up who would have thought that wearing a shoe would feel so strange had some other great news in the post today I've had my disabled blue badge confirmed so know more being stranded in the car park waiting to get run over. I'm starting to see a little light at the end of the ever long tunnel my journey continues....

Charcot continued

Update on the crappy thing that is charcot! I had my latest scan on Sunday to see how my fractures were doing results sometime this week in the mean time. I had an at home assessment from personal independent payment (PIP) I think? Anyway had to go through a form with her which I had already filled in (in June) but there computers were down so had to go through all these stupid questions again. I decided (in my head) to answer them sarcastically 1st question how do I get dressed? (I've got 50 pairs of clothes on just take one set off a day) 2nd question how do you get down the stairs? (I take my mattress off my bed and slide down great fun!) 3rd question how do you pull your trousers and pants down when you use the toilet? (I don't I just wee through them) 4th question how do you shower? (I wait for it to rain and ask my mum to dump me in the garden with my wheelchair, shampoo ect then she pushes me round the garden really fast to dry me) if only I could have answered the questions like that. But on a better note I did get my MRI results today my left foot isn't fully healed and need to continue doing what i am doing for a little while longer. My right heal is now fully healed and can start to weight bear on it with my air cast on and I know longer have to sleep with my right air cast on either :) (roll on bedtime) however I have my endo appointment tomorrow and I don't think that's going to go as well.

Charcot part 3

Well last Friday was my recent foot check up and it went very well despite the 3hr appointment time but they treat everybody's problems for as long as there needed and that's why it's very time consuming. The waiting room was rammed as it usually is I don't know if its the same in every hospital but our foot clinic only runs two days a week and if there's an emergency people get shuffled (like I did so I don't moan). There are too many chairs in the waiting room as the majority of us are in wheelchairs I'm sure it would make more sense to remove some other wise you get dumped by the water fountain. Some wheelchair users really do need L plates not me I'm fantastic my nurse has already put me down for wheelchair rugby! But it's an option. I was called in by the chiropodist (not the nasty one she hurts) my feet were fine no heat and non swollen (smug) I have my scan next week and my doctor is very confident that its possible my air casts might eventually come off. She even booked me in to have my feet measured the same day yay! The doctor was lovely he measured my feet and I had to put my feet in this strange box that sank when I put my feet in very weird experience  . Then I got to pick my sexy new shoes (snort) those catalogues really do know justice and they should be here in 4 weeks. I have funny feet apparently my big toe is not flat from underneath to the end of my little toe. However he thinks I may only need special soles eventually so I can't complain and also my heel now clicks but let's see what the scan says first fingers crossed. Although I was having a conversation with my friend only last week that if my feet have crumbled I would rather amputate then surgery (theres been times when i wanted to hack it off myself its been that painful) and I would like one of those blade legs (do I get a discount on shoes if I only need one shoe or should I save it for someone who had the opposite leg off) my friend just laughed and said you've really thought about that haven't you my reply was yes.

Lifestyle

I'm sure we've all dreamt to be richer, better financially off and debt free but sometimes things happen that can take that away from you at probably the least appropriate time. Myself for instance I was doing two part time jobs just to keep above water I was just getting myself back on track when I was hit with Charcot. Not knowing much about it I thought it wouldn't take that long to get better how wrong I was. Although I was in pain and discomfort I didn't think about the financial side but just 4 months into my treatment I noticed there isn't any financial help or support a losing battle. I'm currently receiving ESA (employment support allowance) which you can only have for 1 year except because I'm on a contribution allowance and not support I've got to start all over again in 6 weeks when I already know I'm going to be off work a lot longer. I also filled in a ridiculous form for PIA (used to be disability confusing i know) where every question was the same just written differently I may as well of banged my head against the wall (maybe the damage from that may of helped me get a claim) but its now been 15 weeks since. Somebody was suppose to come see me last week about my claim by Thursday Ive had no date or time so I rang them there response was someone forgot to ring me but can I get to Nottingham the next city over. I would love too! Put the kettle on and Ill just hop on the bus and ill be there (stupid) I'm in a wheelchair and have no one to take me at this short notice (oh they said whats actually wrong with you? me do you actually have my hospital notes which i know you've received!) well we have no one in your area for at least 2 weeks so still no money. I've worked ever since school only days I've had off are for shit diabetes I've paid my national insurance (although I had started using that way before I had started paying for it). And my tax a lot of people in the same condition seem to be having the same problem and I know a lot of them would quite happily go back to work if there's a job they can do with there condition.

Charcot part 2

Yesterday was my foot clinic appointment which I hate going to 1 because I don't like people touching my feet and 2 being around ulcers and amputees makes me shit my pants about the future (lesson learnt). But yesterday turned out great my feet are now normal temperatures (minus the 2 infected toes) and not swollen at all doc says its time to book you in for your next scan (yay) and if there healed its time to start learning to walk again (double yay). So yesterday I actually left hospital with a smile on my face (which if you know me is rare). Decided not to get my hopes up to much just in case they aren't fully healed but it sounds very promising Emma 1 diabetes 0 (blows raspberry)

Depression

I think with any incurable illness your more likely to suffer with depression compared to a healthy person (might get slaughtered for that remark) I some times look at these healthy individuals and think what have you got to be depressed about? Is that selfish of me? But they get depressed over the silliest things (oh shit I've put 2lbs worth of weight on) yeah because that is such a major thing to be depressed over least you don't have to eat a chocolate bar before you do exercise in which then what is the point of exercising. I'm quite down myself at the moment which I'm not afraid to admit even crying in the bathroom because I couldn't get myself dressed after my shower the simplest of things. In most people's lives and i no someone out there is in a worse place and there probably saying (really is that all you couldn't do I can't even feed myself). I will eventually get my head straight as I normally do myself but for now this song pretty much sums up how I feel right now. Hopefully tomorrow I won't feel so selfish you probably think that it's a bit dramatic and some of the lyrics are missing but most of it is to how I'm feeling specially the ones about life and what's happening in my life at the moment but tomorrow's another day and hopefully I won't be so selfish.

And the world was a song

And the song was exciting

There was a time

Then it all went wrong

I dreamed a dream in time gone by

When hope was high

And life worth living

I dreamed that love would never die

I dreamed that God would be forgiving

Then I was young and unafraid

And dreams were made and used and wasted

There was no ransom to be paid

No song unsung, no wine untasted

But the tigers come at night

With their voices soft as thunder

As they tear your hope apart

As they turn your dream to shame

And still I dream he'll come to me

That we will live the years together

But there are dreams that cannot be

And there are storms we cannot weather

I had a dream my life would be

So different from this hell I'm living

So different now from what it seemed

Now life has killed the dream I dreamed

NHS

NHS?? In many ways I am grateful one for giving me insulin to actually keep me alive and two for my rather expensive insulin pump. However I'm not grateful for my GP refusing me treatment as you some what think its my fault of course i asked for a disease in which i did not sign up for bit like mother nature letting me know I'm not pregnant and that i'm safe for now which also i never signed up for is that my fault to? and you now have a complaint pending its way to you (doctor not mother nature) Why is everything back to front? since having Charcot it has been a nightmare first of all my wheelchair it took me nearly 2 months to get bearing in mind my GP couldn't help and don't get me started on that! But because I was an out patient I couldn't have one. Yet surely if I was an impatient I wouldn't need my own wheelchair you have plenty I then got directed to the Red Cross who were a waste of time telling me that all there wheel chairs were sent abroad! I could say some harsh things! But I won't. I am now waiting another 15 weeks for my own made to measure wheelchair bearing in mind I might not even need one by then (and that's a big might!) and benefits are also back to front because if your not earning ( like myself cause I can't physically do anything ) I can't get free treatment but if you've just been released from prison (cause im sure minty breath is the first thing on their minds) you can oh and if your working you can also get help cause that makes sense. I won't mention what a palaver ( yes well done I can't spell) it is getting financial help as I'm still waiting 3 months and I'm aware this is more of a rant than a blog today but my shrink will be proud that I'm venting well!!

Negativity

Where do I start not everyone knows this as its not Sumat I shout from the roof top a lot of http://whitehurs.blogspot.co.uk/2013/07/family-outings.html?m=1 think I've just fractured my feet (yes both!) but in actual fact it's more serious than that I have charcot. It's a TYPE 1 diabetic complication this mean I am in air casts for the next 6-9 months non weight bearing and when they eventually heal (optimistic) I've got to learn to walk again this means ill be wearing shoes for 10 minutes a day only. I've so many times just wanted to rip the boots from off my feet and just walk but if I do my ankle will pretty much collapse and fall into my feet and the arch of my foot will come through my skin then it would all need pinning back together again. I blame myself for this complication no one else. I've had to give up me beloved job ( adog walker is no good with no feet) I've lost my independance and now have to sell my car. People keep saying it will get better and yes it will and that I shouldn't be so negative but if I'm negative then I can't be let down I try to plan things to look forward too but that never seems to go to plan I try not to get my hopes up but I always do and then I'm left disappointed. So my life is now on hold just what you want at 26!

Complications

Diabetic complications I myself have 2 Charcot and proximal neuropathy at 26! I've had un stable blood sugars for at least 8yrs I know! If I knew this would happen at such an early age it might have made me look after myself better or perhaps been shown a diabetic patient with no feet and blindness. I know it's my own doing and dont need a lecture but perhaps I would have needed one back in the day every diabetic is told of the possibile complications but this normally happens (later in life) apparently (wrong answer!) but you can kind of expect it when your older and have had the disease for like 50/60 years not 13! But not all diabetics have complications depends how well you are at stabling your blood sugars and getting enough support. A lot of people think its an easy disease just dont eat sugar and take your shots but your blood sugars can be very sensetive for instance stress, exercise can sometimes have a big affect. Every time you eat is a maths exam (and im shit at maths) but its not always bad there is also the posotive like free prescriptions and not having to go full term when you come o have a baby. But on a good note I have now started looking after myself better sooner rather than later and all that I am on a mission my blood sugars are now under 12 (USA 216) with the odd random 30! (USA 540) But it isn't going to happen over night so on I go...... :)

Appointments

APPOINTMENTS- I had an appointment at the foot clinic today that's not the problem I would say a  11:10am appointment was a reasonable time getting to the waiting room was fine till I saw the amount of people there. There were no seats mainly because most of us are in wheelchairs but this meant my mum and dad standing yes I have a chaffeaur I did ask my mum to ask the lady in the wheelchair next to us if her seat was taken ha! But it was rammed. Got chatting to a few people who had appointments at 10 who were already an hour behind it was getting on for half past twelve now and bearing in mind I had to be at the splint clinic for 12 so got moved on to there first. In all I was waiting for 2 hours to see the doctor she is very thorough and this is why I think they are always running behind I wonder if this is the same in all hospitals? However while I was waiting the gentleman next to me noticed my buzz light year boots who turned to me and said I used to have 2 of those that's when I noticed he only had one remaining leg yikes!!

May 15th 2013

2 weeks before this date I was adventuring on a new journey..... professional boxing (sort of) well it kind of ended before it began really. I jumped which is quite normal in squat jumps but being totally exhausted I only jumped a couple of inches (yes inches) possibly centimetres actually I got a spasm and sharp pain in my left foot so I walked it off (hobbling slightly). Next morning my foot was black off to a&e I went one X-ray later it's just badly bruised after the joke I thought you boxed with your hands not your feet ( really I never knew that). One week later 15th may I went back to hospital as now both feet swollen and still one black foot. Two hours later I was hit with the condition Charcot arthropathy a complication of type 1 diabetes but quite rare at my young age (coughs 26). I'm a naughty diabetic paying the price now unfortunately story of my life. But the news crushed me bearing in mind I'm a dog walker in real life so bye bye boxing professional athlete and hello 8 weeks in air casts hmmm cripple came to mind and thought life was over in which it was for a week. Then my brain said I was being selfish and there are worse off people than myself so I picked myself off the floor (with crutches obviously not that naughty) rubbed my puffy wet eyes and sat down which is where I'll be sitting for the next 4 weeks until my wheelchair comes in the next 15 weeks I am aware that doesn't makes sense?? To be continued.........