Burning Issues

It has now been four months since that monstrosity of a blister appeared on my left heel and I’m happy to say that the ‘kiwifruit’ has now shrunk to the size of a grain of rice.  I do however occasionally wear the “orrtottic” boots as my heel still has a tingly numbness and a slightly purplish hue that I’m keeping an eye on just in case the kiwifruit decides to return for an encore performance.

The healing of my pressure wound does not however mean that I have given the district nurses any respite from tending my wounds.   I awoke one morning and found to my dismay that I had more blisters, but this time they were on my knees!  For an alarming moment I imagined my entire body becoming covered in inexplicable pressure wounds and spending the remainder of my life surrounded by health professionals earnestly debriding the necrotic and devitalized tissue from my mutilated body. P1030389

And then I remembered the freezing sensation I’d had in my knees the night before and the blissful sensation of the warm hot water bottle.  So delicious that it had sent me off to sleep.  But so hot that my knees, with their reduced sensation due to the MS, were in fact being burned.  It’s taken a while and some TLC but fortunately they are now on the road to healing.  I’ll be glad when I can be bandage free though – as much as I like our district nurses, it’ll be something of a personal breakthrough when I don’t need to have them visit me every other day.

I’ve heard of MS sufferers taking hot dishes out of the oven with their bare hands so I guess it’s all part of the MS learning curve which regrettably I’m at the bottom of … and now I have the scars to prove it.  Note to self to be more mindful of the reduced sensation in my legs and to be more careful in future.

Thankfully the reduced sensation is only from the waist down for me, although I have noticed a numbness in my mouth and that I often have a horrible taste that no amount of peppermints and toothpaste can disguise.  Food just doesn’t hold the same appeal as my sense of taste is only activated by something spicy, like a good curry or a delicious slice of ginger crunch.

And that brings me to that other ‘waist down’ nightmare for MS sufferers – going to the loo.  What a bloody nightmare that is!  There’s none of this “I’ll go now because I’m near a loo and I don’t want to get caught short later” luxury that we all take for granted.  With MS the messages from the brain get lost somehow and you simply can’t pee on demand – straining, pressing on your bladder and doing fake coughs might squeeze out an extra tablespoonful but at the end of the day, when you need to go, you need to go AT ONCE because your bladder has reached critical mass and heaven help the poor sod who gets in your way en route to the toilet.

Which is possibly why the Urodynamics team at Burwood decided it would be a good idea for me to at least learn how to self-catheterise.   I was dreading this.  I was told to be there early on the Monday morning and that it would probably take at least half a day (due to failures) to get the hang of how to do it.  I was also given some antibiotics as there was a high risk of infection.  Brilliant.  Pretty much the last thing I wanted to do was hang around a hospital for half a day failing to self-catheterise myself and eventually emerge with some ghastly urinary infection.  I think I’d opt for the emergency toilet dash over that any day.

Anyway, without going into the intricate details, I totally nailed it in less than fifteen minutes!  A piece of piss you might say.  It’s not something I necessarily need right now but it’s something to add to my ‘skill set’.  I might just pop that on my CV.

The other thing I was asked to do was to keep a diary using the corresponding diagrams provided on the ‘Bristol Stool Chart’.   I’ll spare you the details but suffice to say, the fact that a yardstick such as the Bristol Stool Chart even exists provides such a wicked source of infantile amusement for me, I nearly pissed myself laughing!

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A WEEK OF IT

The title of this post might suggest that I’ve been away on an IT course for a week and whilst that prospect doesn’t fill me with uncontained excitement, it would be infinitely better than the ‘IT’ that I’m referring to. This ‘IT’ should really have an SH in front it …

 

Saturday 14th January

The blister that mysteriously appeared on the heel of my foot last Saturday is now about the size of a kiwifruit.  If it gets any bigger it will need its own passport.  This must be some weird MS related outburst as I’ve never had anything like this before.  It’s something I might expect if I’d done a week-long tramp in ill-fitting footwear.  Needless to say, I’ve done nothing of the sort.  It’s like a huge water blister and underneath the fluid I can see a dark red patch which, to stick with the fruit analogy, I would say would be about the size of a cherry plum and about the same colour.  I went to the doctors last week and they gave me antibiotics and tried to drain it but the damned thing just filled right on up again.  I don’t think this is a ‘normal’ blister and it’s playing havoc with my MS symptoms, possibly because I’m having to tiptoe on my left blistered foot while my right leg (which is the weaker of the two) is bravely trying to bear the majority of my weight.

By the evening my hips were stiff and sore, my left leg had gone completely numb, the kiwifruit felt as though it was close to boiling point and my right leg was as weak as water and just about ready to completely collapse.  I laid down, kept the blistered foot up and stuck a bag of frozen peas on it.   About an hour later to my immense relief, the bloody thing burst of its own accord.  I now have the suppurating remains of the kiwifruit to contend with and under the flapping skin, a squashed cherry plum which hurts like hell and I still can’t put any weight on it.

Monday 16th January

My daughter took my car to town today.  She’s going to drop it in to the specialist VW mechanics for the repairs that need to be done before I can get a Warrant of Fitness.  I’m really looking forward to being able to drive again and have some independence but I’m on a waiting list for a disability assessment.  Evidently these waiting lists can take six months but they’re hoping that mine might be considered more urgent as it will enable me to drive to work.  We have access to public transport here but it involves taking a ferry which has no disabled facilities at this end, although there are at its destination, which would be kind of annoying if you didn’t know this and were making the journey the other way around.  Anyway, I just hope I’m over this blister problem before my assessment comes up because I think I’d struggle to pass at the moment.

The doctor phoned and I need to go in and show them my now burst blister which is weeping all over the place.  Getting ready for my appointment when Katie texts with bad news.  About a week ago a tree blew over in the driveway and it was sort of shuffled out of the way to clear the driveway but Katie had forgotten it was still hiding in there and backed into it.  When you’re not used to driving a VW Beetle, the fenders tend to stick out more than you expect and she’s dented the right hand side and taken some of the paintwork off.  Bugger.

Blister seems OK and is re-dressed.  Phoned the mechanics later in the day to see when my daughter can collect the car.  Receptionist there tells me she hasn’t phoned earlier as this is her first day back after being away on maternity leave for eight months.  There is no way Katie can pick the car up today because the job is going to be ‘very big and very expensive’.  This is exactly what I don’t need to hear right now.  I ask her to phone me back to let me know exactly what I can expect as her statement of doom has left me in a state of angst and apprehension.  I spend a dismal afternoon imagining myself making a disheartening effort to pay a bill well into the thousands on a WINZ benefit.  I finally get through to the VW repair place after several attempts throughout the afternoon only to get a recap on the ‘madhouse after the eight month maternity leave’ situation and a ballpark estimate that the parts alone could be anywhere between seventy and a thousand dollars.  If all this ‘busyness’ is due to a surplus of customers, I am confident this woman will be capable of single-handedly remedying that situation in fairly short order.  My blister hurts, my legs don’t work and now my car is dented and damaged and I have no idea how much it’s going to cost to get fixed.  I have another letter from WINZ but I’m not in the mood to try to decide whether it’s one to ignore or action so I leave it unopened.

Tuesday 17th January

I decide that leaving my car in the hands of someone who can only forecast lengthy delays and large expense without backing it up with some facts and figures is naïveté to the point of foolishness.   Furthermore if I have to listen one more time about this woman’s problems due to taking maternity leave, I will feel compelled to give her a blow by blow account of my own.  My daughter knows of someone who works at Pitstop and they seem much more helpful and communicative but before she could pick up my car  their ‘helpful’ receptionist made her pay $97.75 just to remove it from the yard.   I write an email to the Manager in the hope that I might at least be able to recover this amount as they’re normally very good and have never had this trouble before but I never get a response so I won’t be going there again!

Blister is really shit.  I hope this isn’t a relapse – what with this blister and the stress I wouldn’t be surprised but I try not to even think of that possibility.

Wednesday 18th January

Blister is still weeping and sore and it seems to impact on the MS symptoms with every day that goes by but I’m not sure what to do about it.  I try lying down with my foot up as I’m feeling really buggered.  There is a really lively rodent running around in the walls of the house and the action seems to begin just as I’m about to drop off to sleep.  In fact I suspect it might be rodents (pl.).  I put out some rat bait, hopeful this will put a stop to their nocturnal shenanigans.  I walked up the slope to the driveway today which was very difficult.  I think I’m going to have to move house as walking up that slope in the wintertime is going to be a challenging undertaking once the rain and frost really set in.  I find the thought of moving exhausting and I don’t want to but suffice to say that at this stage I think this place is going to become too hazardous for me.  On the bright side, the WINZ letter was one of the ignorable computer generated variety (at least I think so).

Friday 20th January

I was able to get a cleaner through Life Links who in turn go through Access who in turn got me someone who services the area to come every Friday morning at 9:00am.  I have one hour and forty-five minutes allocated to me.  In some ways it’s a bit of a double edged sword as it means I have to get up early to get showered, dressed and breakfasted in order to tidy up a bit before she arrives.  This sounds easy but when you have MS along with a blistered foot that needs dressing, successfully meeting the 9:00am deadline is quite an achievement.   Furthermore I suspect the cleaner may have her own disability issues and it would be an understatement to say that she isn’t particularly efficient.  However I doubt she’s earning much more than the minimum wage so I probably can’t expect too much.

Today however I didn’t need to rush as she didn’t materialise until 9:45 and announced that she would have to change her hours as Access had altered her timetable and she had another job before and after mine which meant that in future I would only be getting just under an hour of my allocated time.  I phone Access to ask why my allocation had been cut down and get hold of their call centre.  Evidently they hadn’t altered her timetable at all and when they spoke to the cleaner about it she said that it was because she had completed everything she was required to do.  When I spoke to the call centre again I said that this was definitely not the case and I was being told it was because of them changing her schedule.  I didn’t seem to be able to get it through to Access that she hadn’t done everything that was authorised on their list and if they hadn’t altered her timetable, what this cleaner was actually telling me was in fact, a lie.  This was met with a somewhat patronising tone that the cleaner had done everything on the list and was therefore entitled to cut down her hours.  I got nowhere – clearly Access was happy to take the cleaners word for it but not mine.

Just before the cleaner left I asked her again why she was cutting down her hours and again she told me it was because of Access messing around with her timetable, but this time I hit the voice recorder button.  I phoned the local coordinator and explained what had happened and although she was a lot more helpful than the call centre, I cancelled the cleaning service.  I was all set to go through their complaints process, however when I thought about it, what would anyone have to gain by this?  It seemed like she’s the only one servicing our area and if she lost her job I doubt she’d get another one very easily and it would just be another poor soul floundering around in the WINZ system.  Even though she’d lied to me, it wasn’t really her I was upset with.  It was that woman at the call centre who would probably come out it unscathed.

So I leave it at that and concentrate on completing yet another form from my insurance company.  If I can only get this income protection claim approved I can get the hell out of this crazy system so I focus on that happy thought instead.

Saturday 21st January

It’s still Friday in the USA and Donald Trump gets inaugurated as the 45th President of the United States.  God help us all.

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