Hospital Time

So tomorrow is admission day, my bag is packed, my crutches etc are labelled and my muscles feel like they have been torn to shreds!

I'm hoping that I will come back from a (largely) drug free (and therefore relatively coherent) hospital stay with a Pukka Pad full of writing-although discovering that the only answer to reading in hospital is to take my kindle may distract me-as well as a new appreciation of how a body is supposed to move and a plan to keep mine moving!

The truth is this is my chance to do everything I can to avoid the rather dire prediction of my Rheumatologist that having looked at my scans I will have at most two years before ending up in a wheelchair. There is nothing I can do about the existing damage (other than to ignore it with whatever help my largely ineffective-the best EDS side effect-pain killers can give me) or limit the future damage.

So off I go for a week of intensive physio and hydrotherapy with the intense hope that the pain I am currently feeling is due to overdoing the packing rather than a fibromyalgia flare up. Wish me luck!!

Getting Back on the Horse...Again

Once again it has been a while since I have posted anything here, it's not so much that I stopped writing it's more that I have been struggling to find the humour in life. At this point I should mention that I am currently making use of my years of typing practise as the cats have decided that the rain is in fact my fault so they are going to have a fight every time I take my eyes off them. Unfortunately my year of working on helplines and with children have taught me how to type while looking in the opposite direction and talking! I knew work would come in handy one day! So here goes my attempt at returning to the blogging world...

After months of tests and plenty of poking and prodding I have spent the last few weeks being treated for the results of those tests, this did result in a rather unpleasant two days in which I saw four entirely separate medical professionals, had eight x-rays, six shots of local anaesthetic- both in rather sensitive patches of skin and two of which increased the pain level rather than numbing, and two implants. This resulted in quite a few days of discomfort and the return of my four year old self.

However 16 days later I am back (although I did have two more appointments, two more shots of local anaesthetic, one more x-ray, one magnifying tool with magic cancer detecting lenses and three more foreign bodies implanted) and I am trying to remember to laugh at life. Incidentally having confined myself to sitting in the flat looking at the glorious weather outside in order to ensure the mole that was being looked at was not in fact cancerous I was informed that it is most likely not cancerous (YAY). I am now watching the rain pour down and laughing at my stupidity at missing one of the very few sunny weeks Britain happens to have!

Now I know this post has been more of a catch up than anything else and is rather devoid of humorous moments but this is me getting back on the horse. Hopefully the humour will return soon and hopefully I will be back in the next couple of days rather than the next couple of weeks! In the meantime I will be reading away looking for inspiration!   

Crutches, Teeth and Other Disasters!

Having cancelled my dentists appointment twice and with the sneaking suspicion of root death in one of my front teeth it was necessary to attend my last minute appointment. So having experienced iPhone disaster yesterday (it froze and had to be reset at my house-mate's step-mother's house) I prepared to set out to town with my computer (so I could fully reset the phone and get it to the point where it would makes calls etc). So with bag packed and cats separated (Tahora is not a fan of her cone post spaying and Mooku is very intrigued by the whole package of shaved wounded cat with strange object on her head) I went to grab my crutches. The only problem with this is that in my hurry to get my shivering, groggy cat out of the rain and into the house I left my crutches in my house-mate's car which she drove to work this morning.

This meant that I had to find a way to get my self into town with no crutches and no phone or internet with which to seek help-ironically my lovely neighbour with a slipped disc in her back was actually out of the house as well! Faced with the options there was only one choice-get to town and collect my crutches (apart from anything I couldn't just not turn up for an appointment that I had already rescheduled twice!). So I very slowly wall hopped my way to the bus stop (wall hopping is an extension of furniture hopping, it is what us disabled people do indoors when we don't want to use crutches and involves grabbing furniture-or walls-and propelling yourself to the next piece of furniture-or wall-thereby adding stability to an otherwise tretchorous walk) and then from the bus stop to the car.

Having achieved this and picked up my crutches I then headed to my nearest free internet provider in town and attempted to fix my phone. However this day is not designed for things to go right so from weak sunshine a dramatic downpour arrived, soaking me and making my walk wonderfully slippery! Then my computer took 20 minutes to connect to the internet source it has been using ever since I moved to the flat. Eventually, rather wet and unhappy, the internet decided to work, my phone was restored (with Tahora pictures-yay!) and I set off to my parents house for a quick teeth clean before popping round the corner to the dentist.

As suspected the root in my front left upper tooth appears to have died SEVEN years after it was inured. at this point I should probably add the story of the injury in order to entertain people... Basically on valentines day 2005 I spent the eventing with my boyfriend having dinner and some wine (at the time I had been teetotal). Arriving home I remembered my bed was broken so went to stay in my then house-mate's room. Somehow I managed to knock down the curtain she used to divide her room so got up on a chair to fix it. I should probably mention at this point that my leg was in a full leg cast... As you would probably expect I lost my one legged balance on the chair and fell off it over a small bookcase and face first onto the wooded floor. Jumping up (because admitting pain is forbidden in my mind therefore jumping up and continuing on is the only option following injury) I realised that there was blood pouring out of my mouth and my tooth was facing inwards towards my throat. In the spirit of jumping up and keeping going I quickly grabbed said tooth and yanked it back to its usual position (yep,it really was as painful and gross as it sounds). Anyway, after several weeks of room temperature mashed up food and a trip to the dentist it settled itself down and just wobbled a bit.

Seven years later my dentist tells me that a slow deterioration has occurred and it is likely the nerve is dead or dying and will need to be treated. So at the age of 27 I am going to have my  first experience of dental treatment (other than wisdom teeth removal which doesn't count due to the general anaesthetic. My x-rays have been taken and I have to return in two weeks for the verdict.

I guess the moral of this story is sometimes you just have a bad day and don't climb on chairs after drinking while wearing a full leg cast! Oh and when in doubt blame the idiot boyfriend who persuaded you to drink and left you babysitting his child while he went out to cheat on you-but that's another story-maybe the third moral should be chose your relationships carefully, if they pressure you to do things you don't want to do they are probably not right for you!

Anyway it looks like the rain is pausing so time for another trek into town!

The internet will soon be back!

Having settled into our new flat there were two things missing from domestic bliss, the first being the internet! However as of the 27th we will have a shiny new land line and there is finally a router on the way so hopefully on the 27th of this month I will be back!

The second thing missing (and the most important by far) was a tiny little girl called Tahora (Swahili for purity-my house-mate's cat Mooku is Japanese for purity so not wanting to call her by a human name following the trend seemed a good idea). A week ago tomorrow a tiny, abandoned, underweight, kitten sized cat decided to claim me for her own-I blame (and thank) the friend who took me to the shelter because I'd never been!

So for the last 6 days we have been enduring fighting and moaning and rumbles under the sofa and a couple of sleepless nights as the two cats get used to each other. I have also been enduring my own personal hell and milestone of pet ownership in the yucky goo her eye is producing (I have a massive eye phobia and have been known to punch or ostracise people who take advantage of this just so you know). So as a brand new cat owner (she is my first) I have discovered that a dirty nappy is better than a dirty litter tray, papers baby wipes taste better to her than huggies, and at 18months she is still very much a kitten but a little confused as to her breed! by this I mean that she (and on occasion Mooku) seem to think she is a dog.

At least 3 times a day I am treated to her chasing her tail around the rug (usually ending up flying off the rug sliding across the wooden floor and looking indignant) in order to me able to clean it-apparently it has a mind of its own and is determined not to behave! We try not to point out that chasing your tail is predominately a canine pastime, she has had a hard enough start! We also have at least 3 episodes of her walking around the flat emitting a sound that is somewhere between ow, no and a newborn crying. Having tried to discover the meaning behind this sound I can only conclude that she wants everyone to know she is still there so we wont abandon her (she frequently peeks round the door checking we are still there while she is exploring).

So those are the two major pieces of news, the rest of the time has been sent alternating between the hospital and the doctors for various appointments, oh and the fact that after my MRSA swabs tomorrow I will get a date for my stay in the Royal National Hospital for Rheumatic Diseases in Bath for intensive physiotherapy, hydrotherapy and general torture (of the useful kind). It will also mean that I can get a date to start my pain management therapy using mindfulness-it should go nicely with the pilates demonstrated so elegantly by Darcy Bussell that reduces everyone who has tried it to swearing at her description of a 'lovely burning sensation in your muscle'. Other than that (and her general gracefulness) it is actually a very good programme, even a cripple like me can do 90% of the exercises!  

I think that is it for news so far, there will be a picture of my beautiful cat here very soon (in fact comparisons of her in the shelter, her first day at home and her new healthier physique that is already beginning to show), now we just need to get her through her spaying and me through my biopsy (to see if my busitis is infected) and injections of various drugs that will apparently hurt enough to need a local anaesthetic (which work for about 2 minutes on me much to the annoyance of my last anaesthetist). Both of which are happening tomorrow! Here's hoping for speedy work on me and good work on her! 

Still Moving

So a week or so on and we are still gradually moving in but the new flat definitely feels like home, just needs a few more books in it. Unfortunately we have been hampered by a cold (which I hardly ever get), post-op limitations, a chest infection (thanks cold) and a stomach bug (lucky Alison, glad I skipped that one!).

The aim of today is to get the rest of my old room packed up ready for the final moving but I appear to be lacking inspiration due to general being generally sore- thanks weather change! and it being rather early so instead I am contemplating packing while writing blog posts etc. to distract myself from the inevitability of the fact that I really do have to do it :(

Ah well, better get started, the sooner you start the sooner you finish and all that...

Moving House!!!!!!!!!!

Um...well...I'm moving house...Knee hurts and knackered but love the new place already! No internet for the first month though it looks like so will be rather sporadic on the post front. Hopefully the writing will continue though and you may end up with a barrage of new posts!!!

Wish me luck!

There are Good Days and Bad Days!

There have been quite a few bad days recently, the endless stream of paperwork and physio and drugs and scar massage (don't let the term massage fool you, the aim is to rip the formed scar tissue off the muscle making my leg able to bend) but today was not one of them!

Reaity is knocking, do I really have to answer?

There are many different aspects to living with the reality of a disability. There are some that you barely notice because you have been living with them for so long. Others you will never get used to. For instance knowing that there is a time delay between waking up and being able to get out of bed is normal. Knowing to make large meals because there are days when cooking becomes impossible is just a fact of life and doing roughly an hour of physio every day doesn’t seem like such a hassle when you have been doing it for 16 years.

Baths

A bath seems like a simple thing to have. It runs for a few minutes and then you have hours of stress free relaxation time. That is unless it is your first post-op bath which happens to occur after physio. The first barrier to bathing is the type of bath you have, no handles equals no bath so challenge number one is walking around the corner to my parents house where a suitable bath is waiting.

Week 7

So we have reached week 7 of the Blueprint The Gruffalo Child Reward Chart which means we are half way through (as it is being used by two people). Last week didn't go too badly, helped along by glittery new stickers (week 6 is at the top of the pic due to its refusal to be included last week!):



The goals for this week are basically the same except not being hard on myself has been replaced by going outside...

• Write something every day
• Do physio
• Read a chapter of Living Well With Pain And Illness: The mindful way to free yourself from suffering 
• Go outside every day
• Have breakfast and lunch

So looks like it's time to giving the whole going outside thing a go, wish me luck!

The Realities of Post-Op Recovery

No one ever says that the (orthopaedic) recovery period is easy, they say it’s worth it, it’s challenging, it requires dedication and it ultimately leads to a greater degree of freedom than your pre-op state. The part that people who have got to the other side seem to forget to mention is the pain, the humiliation, the isolation, the desperation and the tears. I am as guilty of this as the rest but the only person who isn’t helped is the person currently going through the recovery period who is sitting there hearing all the platitudes about how it will all be worth it in the end.

Pain Management & Mindfullness

Over the years working in a book shop I kept spotting a book called Living Well With Pain And Illness: The mindful way to free yourself from suffering and instantly dismissing it. However after my intro to pain management book list recommended it I decided to have another look as it has always sold pretty well. My main compunction being that it involved mindfulness which i automatically assumed to mean some kind of spiritual crap and meditation. Well having reached the second chapter I am fairly convinced that I'm safe from spiritual stuff but today I had to face meditation, an activity I have consistently avoided due to my inability to sit still let alone empty my mind!

Deadlocks and Drop Curbs

There is a very strange phenomenon when you are on crutches and attempt to cross a road. As a standard pedestrian you stand there at the edge of the road for three hours in the pouring rain while drivers aim at puddles to splash you. However as soon as you are on crutches (and the slower you are going the more it happens) cars automatically stop for you and let you cross. Now as a pedestrian this is a fantastic thing to happen, however as a slow moving crutch user you are acutely aware of a queue of cars about the same length as the queue on a motorway in mid-summer following an accident. This pressure makes you more and more anxious until you are attempting to use your crutches as monkey bars to swing across the road thus increasing exponentially the chance of said crutch user ending up flat on their face in the middle of the road (luckily this phenomenon occurs about five times as often within sight of a hospital.

Week 6

So week 5 was another week of struggling, largely thanks to my incision getting infected and making me want to curl up in a ball (slight problem when in a straight leg brace) and sulk!

And to add insult to infection the picture refuses to publish,maybe I'm only allowed one a day?!
(imagine pic of gruffalo chart with less than usual stickers but just enough to get a reward!)

So this weeks goals are:

• Write something everyday 
• Do physio (even though it is hellish)
• Read a chapter of Living Well With Pain And Illness: The mindful way to free yourself from suffering every day
• Not be hard on myself (hmm...)
• Have breakfast and lunch (back to being a problem again)

And in a cruel twist of setting my aims higher I have increased the number of stickers required by five :S

Three Weeks On (inc pic)

So week three arrived with the fantastic news that the evil brace is history!!!!!!!! Unfortunately this does mean physio begins :( I had the brace off Monday afternoon and went to my first physio session at midday on Tuesday. The good news is my surgeon has given me unlimited use of my knee (sounds rather like a phone or internet plan but hey!) the bad news is that my knee is not quite so on board with all this no limits stuff!

Off to the Hospital

So today is wound check day and frankly its a very good thing that it is! I currently have a broken brace which requires two people to adjust and needs to be adjusted every time I stand up-this is not ideal! The wound itself is infected and the antibiotics are not helping, in fact the infection seems to be getting worse. Finally my foot is the size of a small country. In fact it looks like one of those cartoons where they try to pump up a person and the hands and feet become balloons with tiny fingers or toes sticking out! Hopefully today will get the infection and the brace sorted (although I really would like either a smaller brace or no brace at all).

Well, we'll see, off to the hospital this afternoon and hopefully more cheerful posts to follow!

Just Stuff (pic warning for the sqeamish)

“Life is scary, get used to it, there are no magical fixes it’s up to you”
“But what if it’s too hard?”
“Nothing in this life that is worth having comes easy”

I was sitting trying to figure out what to write and from the TV that I had on for background noise I hear this conversation (why is that comedy shows have an uncanny habit of hitting nerves a lot more often than they should-stick to the funny stuff!!!).

Two Weeks On

So it will be two weeks tomorrow. Usually this would be around the time that things are beginning to feel normalish again. Unfortunately this time I have been caught up in the set-back referred to yesterday which is actually a wound infection. At least now I know why I feel sore and generally crappy and now that I have my giant blue bullet antibiotics I will be back up and running in no time!

The plan to try to wangle a range on movement brace to replace the full leg monstrosity currently holding me hostage is still on and frankly after wrangling the receptionist at the doctors today I think I have a pretty good shot! The thing with my surgery is that you can absolutely see a doctor the same day you realise something is horribly wrong with you, oh but you have to let them know between 8:30 and 9am...

Set-back

For some reason, a week after surgery, I have suffered a major pain set-back. Having successfully reduced my pain killers with very little problem thus far I had a huge case of breakthrough pain Sunday night which came from no-where. Within 30 minutes I went from contentedly watching a film to literally writhing in agony. So for the past 42 hours I have been stuck in bed taking massive amounts of painkillers and moving as little as possible.

Week 5

So week four is over and while it wasn't the best of weeks I did in fact manage enough stickers to get my surprise (which was the reward for week four):