The Eve of the Rest of my Life?

This is exactly what it feels like. Tomorrow morning I will visit the orthopaedic specialist (the 3rd I have had to consult over this matter) for the results of an MRA (Magnetic Resonance Arthrogram) where dye is injected via a needle guided under x-ray, into the joint space, followed by a scan. 3 years ago following Joe's birth, I was diagnosed with a tear in the labrum (hip socket cartilage). This was suspected before I got pregnant with him but unable to be diagnosed due to the risk of having x-rays and scans during pregnancy. The specialist omitted to tell me it would be advisable to have a C-section so as not to aggravate the injury.

The most worrying thing is the tear is in my hip on my 'sound' side i.e. my non-amputated side :-/ The prospect of any sort of surgery on the leg I rely on ALL the time, on my ONLY leg quite frankly worries me sick. All sorts of questions like 'how will I weight bear on my prosthesis?' 'will I need to use my chair all the time?' 'How will I get the kids to and from school?' dart round in my head, so much so I just want to bury my head in the sand.

Living with chronic pain REALLY gets you down at times and it's hard to get yourself motivated to do anything, so the reality is you just 'fire fight' and keep your head just above water. You are shattered all the time, yet can't sleep, whether it's the actual pain, phantom pain or just the worry. My brain can feel wired at 2 in the morning! You snap at those close to you without meaning to and forget lots of things!

Referred pain becomes worse than the 'actual' pain...knee, shin, ankle. But everything is breaking down because it can't take the strain. Persistent 'tennis elbow' - ha if only it was caused by taking part in something so fun! Nope....using crutches and sometimes a wheelchair for over 20 years is why!

Then there's the guilt. Trying to be thankful for what I have, when the people around me are being diagnosed with and treated for cancer, needing transplants or having to bury their children. It's a vicious circle where you end up in a downward spiral; too tired and in too much pain to exercise, then feeling lethargic for not exercising. Feeling down so eating junk, then putting on weight and feeling even worse.

It's at times like these it's hard not to feel bitter or resentful about being wrongly diagnosed and all the unnecessary treatment I received. Because the reality is I JUST WANT TO GET ON! I really want to have the strength and energy to play with the children and do my job without hurting. I don't want to walk into the playground and have someone say 'You look shattered' or comment on how they've noticed I'm limping 'worse than usual' or 'not walking so well'. Don't people realise I KNOW?! I want to be spontaneous and not have to plan everything with military precision.

Despite what's happened I've always tried to pick myself up and carry on, yet it feels increasingly hard to do so. I have tried so hard to learn to run again and have achieved it, progressing to doing my first (short!) triathlon this summer, which gave me a huge sense of achievement. That now feels like it will be swiped away from me again, as not only should I not run right now, I can't.

In order to attempt to repair the tear they have to traction both legs, which becomes tricky when you only have one! The first specialist made me feel like a real 'problem' and made it clear he wouldn't really touch me with a barge pole. The second saw me as a 'challenge' and to give him his dues, was looking in to all ways to achieve it. The third, well he seems very genuine, not so phased by the 'challenge' I present, not wanting to rush into anything, very thorough and respectful of the fact that I may find it hard to put my trust in Doctors!!

So in a few hours time I will find out whether he thinks he can attempt the repair or I am heading on a roller coaster ride towards hip replacement, only to be put off for as long as possible with steroid jabs. The course of my life could change forever. My Mum had numerous hip and knee replacements over the years and I saw how she suffered, it's hard to remember the times when she didn't.

Please pray/send positive vibes/give me cake; whatever you believe in, as your support is, as always HUGELY appreciated.

I am not, and never have been looking for sympathy, merely understanding, Writing this blog helps me empty my head of the jumbled worries and straighten them out as much as possible.

The difference a week makes......

Just over a week ago I was on a high having completed my first triathlon www.triathlonpink.co.uk 

One week on and unfortunately I can't wear my prosthesis due to problems with my residual limb.

Many would attribute these issues to the above, but in actual fact I felt totally fine the day after, not even a twinge (I was shocked too as it was fun but HARD work!). 

The reality is it comes with the territory or as I like to say 'it's an occupational hazard'. Whenever someone has had a limb amputated and wears a prosthesis there will always have to be an interface between the two and this is where the problems begin. However well fitting a limb is it only takes some warm weather, a little chaffing and the skin has broken down, then gets infected and wham you can't wear it for days. Sometimes you can patch it up like below but even at times with this much 'padding' it is literally still agony to put weight on it :( 

I realised that this is something us amputees have to deal with on a semi regular basis and to be honest the sooner you accept that, the easier it is to deal with. I am a pro on crutches (should be after 22 years!) only last night when I was leaving cubs after their American Football session (which I wasn't participating in incidentally ;-) I went to return to the car and found I had to go over a small fence...which I had obviously come over on arrival but never noticed! I guess I was too preoccupied by my daughter telling I was 'sooooo embarrassing' after I had opened the car window and politely asked the parent who just parked in the disabled space....as there were no others free(?!!) .... If he had a blue badge. I think you can guess the answer. He did move with no further dialogue.

The thing that hits me hardest is that you so easily and quickly forget how hard it is managing on the crutches or in the wheelchair. I use a wheelchair morning and night when I remove my leg, but only briefly. You forget how hard it is to do all the things you take for granted day in day out. Helping Joe in and out of the car seat, standing putting fuel in the car, preparing a meal, emptying the dishwasher, trying not to slip in the pool changing room, carrying shopping, icing a cake, not to mention working....to name but a few. It's hard not to get frustrated and cross. It's not even using my chair, you can adapt to that, it's because it's such a change. One day, fully independent the next, far from it. 

I wonder why I'm still surprised by the issues we face when trying to use a chair, whilst out and about. I tried to follow Sean into Costa Coffee on Sunday but couldn't as there was no dropped curb, except leading into a disabled space that a car was parked in. Now that DOES make me cross when I'm prevented getting my caffeine fix!! 

Then the reaction you get when pointing out to the manager at Guiseley Zoo (AKA Pets at Home) that it's virtually impossible to enter without going all the way along on the road/car park to the next store because of the bird tables, rabbit hutches and charity collection blocking the path. And not being able to hold your 3 year olds hand and push while in this situation. 'Well it's not usually like that!' Errrr well it is today!! Exhausting just dealing with all that sort of crap. 

And maybe one of the hardest, most wearing aspects is dealing with others reactions and questions. Don't get me wrong I'm not 'touchy' about my situation and always more than happy to explain to the child in the playground where my leg has gone and why I'm limping or wearing a blade. Children are naturally curious and honest and that is great. They are also far more accepting than many adults. 

This isn't the first and won't be the last time I am in this situation. In fact I need surgery on my 'sound' hip due to damaged cartilage :-/ which could see me using a chair for a few weeks. 

I shall leave you with an image of one advantage of not being able to wear my leg when attending Joe's gymnastics class with him today. It was the final session of term and bouncy castle....and somersault time!! :-) 

Battling with myself....

You may say I'm pretty content with my lot, used to the way things are for me physically and I manage. I get on with it. I won't pretend things aren't hard because sometimes they are. Whether it's wincing putting my foot to the floor as it's so sore and I need the 'big guns' in terms of dressings, barrier cream etc or I lose one of my hearing aids and not only am I without it but have to claim two and a half grand on the insurance to replace it (you may ask why I have to pay privately? Well it's because the NHS who caused my deafness through their misdiagnosis and unnecessary treatment won't pay for them for me!) or having such excruciating phantom pain whilst driving I think I will crash, so pull over. But I am used to it and it's doesn't eat away at me. Once these things have passed I forget about them until the next time.

But will I EVER get used to the comments? 

People always manage to catch me off guard and often I am left stood there not having a clue what to say, with my jaw hanging open. Then afterwards I spend ages analysing what I COULD or should have said, and kicking myself for not doing so. Why can't I sometimes just let it go? Surely the person 'means well' and 'didn't realise what s/he was saying' or 'would be mortified if they knew they'd caused upset' and 'didn't mean anything by it'. Right? Well, yeah, sure but it's not what they meant or didn't mean but the EFFECT it has on the person at the receiving end ie me.

I'm 100% sure the cleaner at the gym the other night when I was getting changed had no intention of upsetting me or making me feel (more) self conscious (than I already do) BUT that's the effect that it had on me. It taps into my own insecurities and worries, that are natural to have given the circumstances. When she asked me 'how long I'd been like that' and 'don't the children mind?' yes I have every right to get a little defensive or cross but then what happens if I do? People then think I have a chip on my shoulder or I'm rude or can't handle it myself. Lose lose situation.

So no the answer is....No, I will NEVER get used to the comments. All I want people to do is think before saying things and if unsure don't say them. It's not about being politically correct or silencing people for fear reactions, it's about respect and sensitivity in my opinion.

Vicki's Triple Challenge

Oh dear it's been AGES again since my last post! As usual life and circumstances have taken over. There never seems to be enough hours in the day, but I guess with a business and home to run, three active children to ferry about and a real change of circumstance for us, with Sean based a long way from home with work and with frequent business trips away, it's not surprising! 

Even more so than all of that has tragically been Sean's Mum's diagnosis of terminal cancer last summer. Devastatingly for our family despite bravely fighting and being determined to beat it, the chemotherapy made her so poorly she was unable to continue with it and was cared for by the amazing Marie Curie Nurses and Doctors at The Bradford Hospice during her last months and weeks. She lost her fight on December 12th 2013 and we buried her two days before Christmas. Not before giving her 'Christmas Day' with all the trimmings. ALL provided by the Hospice. She loved every minute of it, especially having all her family with her and watching her 7 grandchildren dancing and playing under a beautiful Christmas tree. In the hospice's conservatory where she passed away just 4 days later. 

They really are special people who work there and seem to know exactly what to do and say when you feel there are just no words. They make the unbearable bearable.

Because of this I have decided on more crazy challenges this summer! Other family members are also fundraising, including my sister in law who is organising everything from a fashion show to a trek in the Himalayas. She has calculated that Maggie's care cost over £16,000. They need to raise £93 million every year.

Only 7 months ago my friend's husband, Andy, was diagnosed with incurable Motor Neurone Disease. It's a devastating disease and progresses very quickly. Not so commonly known is that Marie Curie also provide support and end of life care for people with terminal illnesses other than cancer, like those in Andy's position.

I dedicate this song to Maggie, Andy and our families. www.m.youtube.com/watch?v=EGLSk3AVcUU Also to my good friend Dawn who is fighting a hard battle right now. When I was running today and just thought I couldn't continue I played it full blast on my ipod and thought of these inspirational people who would give anything to be doing just that right now.

Wish me luck and please sponsor me here www.givey.com/gilbertvicki if you can (I also have a sponsor form) No problems if not and thanks for reading

Vicki x