New Wheels

My wheelchair arrived yesterday and was quickly assembled and admired (although it may need a trip to the lovely Naomi at Pink Sky to make it a little less black...) so all that remained (in the midst of a stomach bug) was an outing!

Well the first thing I noticed was that the pavements around here are no supermarket! I can quite happily zip around Asda for an hour (occasionally being forced to stop suddenly-not fun when you hands are the breaks-to let through the ruder people in life) but a half hour excursion in the wheelchair was another matter altogether!

After a rocky (litterally, parts of the pavement are so bad my wheels were leaving the floor forcing me to rock my way over) 15 minute roll I retreated without reaching my target of the bus stop. I estimate that from my starting point the bus stop and back it is roughly 200yards or 183metres and I was roughly 60 yards short leaving me with a somewhat underwhelming 128metres travelled. Anyway I arrived back home breathless and completely knackered and collapsed on the sofa secretly pledging never to do such a stupid thing again!

Trip two-yep I tried again!-went a little better, having got the feel of things yesterday I knew a little more how to handle the (literal) bumps in the road and I actually got going a little bit and needed a few less rests. i arrived back after 30 minutes (again) having managed the extra 60 yards to the bus stop and back completing my 183m target! In addition I got home and climbed the stairs to get the post before sitting down rather than collapsing!

So what have I learnt from this experience?

1. The Paralympians really are superhuman! the 30minute 200m race would not be popular!
2. When you put plasters on your blisters they find a way to reappear a little higher up
3. When you see a wheelchair user with the handles folded down on their wheelchair it isn't because they don't want help (well not totally) it's because in order to go uphill you have to lean back further than the seat will allow when folded up.
4. Make sure Mooku-my housemates cat-is in the house otherwise he will help you home by zig-zagging in front of you as you make the uphill trek to the driveway.
5. Sometimes, if the hill is really steep (or mildly steep like my driveway) you just have to go backwards or you will waste all your energy trying not to slide backwards-thing how easy it is to pull someting to you rather than push it away, that's how a wheel chair works.
6. Hands do not make goo breaks! Bring on the calluses, these blisters hurt!
7. Don't go home and tell the Tahora-my cat-how it was because she will register that you are talking to her and forget that her tongue is sticking out making your efforts seem somehow amusing (as I'm sure they are to a cat!)

Squashed by the Black Dog

I guess I have been avoiding this post for about a month and a half now because if I didn’t admit it then it wouldn’t be true. I guess I shouldn’t be so surprised and disappointed in myself because it is something that was always supposed to catch up with me eventually due to the long term use of pain killers that reduce serotonin levels and in a way it still isn’t happening how it should because my brain isn’t the cause, my thyroid is.

Firstly I think I should apologise to the family and friends who I have been too ashamed to talk to, logically I know that I shouldn’t feel ashamed, deficient or defective but that is how I feel.

I have now been off work for fourteen months, I am in constant pain and I’m tired-not long day, been for a hike, worked hard or even done too little tired, it’s a bizarre, bone deep fatigue that never really goes away even on the rare occasion that I sleep well several nights in a row. I generally spend ten to twelve hours in bed in order to get four to six hours sleep. This fatigue is something that has never been a problem before, I have often spent months at a time living on four to six hours sleep with no problem, the thing that makes it so hard is the constant waking during the night, for every hour I sleep there is second hour that I spend trying to get the pain back under control and get back to sleep (something not helped by the neighbours from hell upstairs-eviction day tomorrow, YAY).

In addition there is the reality of daily life when there is very little to do. To start with it is great to have time off but once you realise that everyone else is at work and even the godsend of maternity leave tails off there are only so many things left to do and basically all of them involve being alone. Then you have those wonderful days during the week when someone has time off and wants to do something. Instantly there is a solution to the boredom and loneliness until the reality catches up. ‘Let’s go to Bristol/Gloucester/London/Liverpool, we can do a little shopping and the disabled badges mean we can park close so it’ll be fine!’ Yeah, great idea! Oh wait, during this shopping are you going to want to browse because I’ve had to give that up, I browse online then make a beeline for what I need before fleeing because the effort of standing in a shop is too much. So basically there is the choice of going somewhere like a zoo where I can hire a scooter or Cheltenham. Oh but Rory doesn’t go in the car so I need to charge him in town because he won’t survive the ride there, back and around town...

Anyway you get the picture, there are a lot of limitations on what I can do, the main place I go is the gym-in general quite a solitary activity- and the pharmacy, aka my new friends! For about eleven out of the fourteen months I was frustrated but it wasn’t too bad, I felt positive generally (obviously there were some bad moments but I laughed at them eventually) but something has changed and I don’t like it!

Today I went to the doctors, going in I knew there were several things to talk about including the fact that the two non painkillers that alter your brains reception to pain were not working correctly-I will be coming off them over the next 6 weeks to go onto something else but in the meantime my pain will gradually increase as they decrease-the fact that my thyroid is underactive and I had a whole list of symptoms which apparently are attributed to hypothyroidism. The result is that my doctor agrees that I am depressed, something I think he suspected after the last time I saw him a couple of weeks ago, and that the chances are my thyroid is on its way to ‘failing’ but in order to be sure I have to wait 6 weeks for another blood test to fully confirm. For those of you paying attention this means that the next 6 weeks are going to be rather interesting as my thyroid symptoms are likely to increase as my pain drugs decrease.

In the past I have understood the concept of depression and how it works but the reality is a bitch! This isn’t new, I always knew it was but its different to understand the concept and to experience the feelings. In addition (and I have been reliably informed that I’m being silly) the fact that there isn’t actually anything wrong with my brain chemistry-just my hormones- I feel like a fraud admitting that everything isn’t great and positive.

I guess at this point I am wondering what the point is, I do physio and go to the gym for rehab and to help protect against future dislocations but things are getting worse so quickly I have no hope of catching up let alone getting back to the point where I am ahead of the deterioration. There is nothing much I can do and no one really to see and even when there are people or something to do there are so many restrictions on what I can do I end up not wanting to put people out and just staying at home wondering if I would have bothered getting out of bed if I didn’t have a housemate coming home who would be worried if I hadn’t.

So my solution? Buy a wheelchair! Basically I am stuck in a catch 22 situation, it is very hard to go out and do something because I generally need someone with me and then I feel like I am holding them back with my limitations. In addition I find that at the moment I really don’t feel like doing anything. My reasoning is that when you combine crutches, Rory, blue badge and a wheelchair there are fewer excuses to not do something. Hopefully this will work. In the meantime I need to try to figure out where my motivation and concentration have gone. I am currently reading what is almost certainly the best book of the year, but I can’t motivate to read it and when I do my concentration won’t last more than a couple of chapters.

Well, there it is, the black dog has finally caught up, many years after it was expected but it has run me down (not a hard feat, I barely remember having the ability to run). I sit here watching the Paralympics wondering if there is anything I could compete in but I have yet to see a single sport that wouldn’t stress my joints in an unacceptable way. So I guess I will work on pushing myself in my chair at a reasonable walking pace while exercising my quads ready to get back on my feet after surgery. All I need to do now is to try to keep getting up and starting to get more into my day than staring at the wall wondering if things will ever get better. Of course they will, it’ll just take time and possibly hormone therapy!

Sorry for the crappy post but I guess this is what my blog was for...

The Dark Side?

Since getting out of hospital I have kept thinking that I should write about my time in intensive therapy. How they schedule you for three 30 minute sessions of intensive physio/hydro/occupational therapy a day (the normal session being 10 minutes) and send you off with the aim of doing that four more times today (in case you thinking that’s not so bad imagine doing 6 hours of the exercise you find hardest every day) and that is what we did. Through the days we found it hard to get up, the ones we couldn’t remember our names and the ones where the pain we were feeling barely touched on how much we missed home because we had an amazing opportunity and we knew that we did.

I’ll write more about that at some point (it has taken 30mins to type that single paragraph) but tonight I guess I’m more focused on the trip into the dark side. The reason I am sitting on the sofa crying adjacent to (id be in big trouble if the keys got jammed due to tears) my laptop. I have been typing with one finger for the last forty minutes because of the post hospital events.

Step 1: stomach bug

Step 2: wrist dislocation probably during episode of vomiting, retrieving dislocated rib or other routine activity

Step 3: recover from stomach bug to realise wrist is ‘wrong’, report to A&E

Step 4: A&E staff panic because they have never met someone with EDS and wrist looks ‘wrong’ to ortho clinic as hand and wrist expert fully booked

Step 5: ortho doc ‘not confident treating’ ref to hand and wrist surgeon and a half cast in the Edinburgh position on it in the meantime.

Fun huh? So I have a wonderfully heavy cast, sore and spasming arm and severe case of pissed off zebra! To add insult to injury this is the first upper limb injury in which I haven’t been staying with my parents meaning problems like I can’t get my bra on and it’s impossible to eat a range of foods single handed taken on a shiny new level of cringworthyness!

Part of this post is indulging in a pity party but part of it is a genuine question about the dark side. When you are always the one contact friends and arrange things are you barking up the wrong tree? Ok so I am housebound right now but that gives me more time to think about how much time I am home alone when I’m not. Can a health professional who sees you for 10 minutes really assess if your mask is you or if you are so used to dealing with the crap life throws you’re stuck in happy smiley land and can’t break free?

Finally given that we live in a country where summer is ten days in April why the hell don’t SAD lights come on the NHS? I don’t personally have SAD but I do need a lamp to help with hormones that are out of whack meaning sleep is harder than it should be even considering my joints go out (far) more than I do, especially at night? Currently my research tells me its damn hard to find a SAD light rather than SAD-like lamp and if you do they cost more than the £20 the UK benefits system allows for frivolities such as food and medicine (not even drug are part of the DLA package, pay out or get cut off!).

So nearly 2hrs later this sad zebra will take her faulty hormones and broken body back to bed for another night of not so peaceful sleep!

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!