Monday, 12 September 2016



My scooter broke!
Only people with useless legs will understand how the breakdown of a scooter could cause a complete meltdown.  My scooter is the difference between being a social butterfly or being a hermit! Admittedly 'social butterfly' is a little exaggeration, but... I really don't want to be a hermit either.
I have a TGA Minimo... its one of those folding scooters, which means at the yank of a handle, it folds down to a suitcase size and can then be hoisted into the boot of my car.  Mid-yank... the handle breaks!  Woe is me, thankfully with a little (a lot) of help from my dad, we wrestled the (now disgraced) scooter into the back of my car, after folding down the back seats.
  • an emotional meltdown
  • a useless scooter, still in the back of the car
  • tears
  • apprehension
  • worry
  • fatigue

After getting over my meltdown about my broken scooter (all sorts of ranting, crying and yelling - I became a little unstable for a whilst... stress will do that to an MS'er!), I moved on to worrying about how I was going to fix it.  Then I had a brainwave (doesn't happen very often, especially when I've managed to upset myself with recriminations, blame, fear and worry, but it happened), I found the TGA website, which, conveniently had a telephone number... which I rang.  A very nice young man took my details (and my money); ordered a new part for me and offer up all sorts of advice and helpful suggestions.
When the new part arrived three days later, it took my son less than five minutes to fix a new handle to the folding mechanism and hey presto... I'm mobile again!  Crisis over, disaster averted.  Except it made me appreciate my scooter all the more and reflect on just how lucky I am to have a scooter in the first place.
My scooter...

Image result for tga minimo
Image result for tga minimo

Tuesday, 6 September 2016

Nesting... in Autumn?


Nesting... no not birds, but ME!  I found that since walking takes SO much effort, its much easier to do nothing (all day sometimes!).  However, you can't actually do nothing... I mean apart from when the medication induced coma hits, we all spend our time doing something, for me it is either watching television or reading, sometimes watching the birds, eating/drinking (if my son's around to cater to my gastronomic needs) or internet surfing.  But my lack of mobility has had an unexpected side effect.  I now build a nest!
There are no twigs or sticks, no feathers or straw, but I find that during the morning I surround myself with ALL the things I may need for the day.  So, my comfy chair is now surrounded by several tables, one holds all my laptop paraphernalia (laptop, mouse, mouse pad, thumb drives, passwords etc.,); one table houses my bullet journals and colouring supplies (pens, coloured pencils, sharpener, eraser, colouring books and journals) and another table is on stand by for tea/coffee/food.  By the side of my chair I have an extension lead available with various chargers at the ready (laptop charger, kindle charger, mobile phone charger), on the other side of the chair is a smaller table holding my binoculars and a couple of bird books for identification purposes.  On the arm of the chair next to my 'nest' is a pillow for when I get sleepy, a blankets for when I get cold and my trusty bed socks for when the sensory disturbances tell me my feet have turned into blocks of ice.  Like I said I have learnt to 'nest', and whilst healthy people think nothing of just getting up and doing whatever they need to do, I find ensuring my daily needs are all together within arms reach is the best way for me to go.
  • One area of my lounge looks VERY messy
  • Sometimes I don't need to go to bed at all, everything I need is right here
The advantages of 'nesting' are very obvious to the 'nester' (nestee?), with lack of mobility comes an almost inevitable lack of independence.  However if you are able to build an extensive nest you are almost guaranteed not to need anyone for an extended length of time.  The obvious time when nesting cannot help with a totally independent lifestyle would be mealtimes, if you need your food delivered, then you will have to allow someone else to enter your nesting site.  Other times when it may be necessary to exit your nest site would be during toilet breaks (a funnel and piping system is not recommended!), also it IS necessary to bath and sleep in an appropriate area OTHER THEN your nest!
There are also some things to take into consideration. 1. you should be aware of the number of chargers you have plugged in at any given time and arrange the leads in such a way as to avoid tripping over them when exiting your nest.  2. food, empty drinks containers, cups, mugs, crockery and cutlery should be removed from your nest site on a regular basis.  Untidiness (and possible disease) can cause unpleasant smells and further tripping hazards.  3. not everyone appreciates your desire for a nest.  4. Over-extended time spend in your nest can result in anti-social behaviour with a desire to never leave your safe haven.  5. limits need to be set on the size of your nest, without careful supervision a nest can quickly develop into monstrous proportions.
In conclusion, I believe 'nests' are an inevitable progression for anyone who lacks mobility and as long as the situation is carefully monitored and not allowed to get out of hand... then nests are GREAT!

Saturday, 3 September 2016

Driving Made Easy...

I needed to drive my mother to my brother's residence in England and since we live in Wales it would require me to put on my 'big girl pants', 'step up to the plate' and address this driving challenge head on with confidence ("I can do this") and determination ("I will do this") - I talk to myself a lot these days!  I wonder if it actually does any good, is it an 'MS' thing?  An 'age' thing?  Or, maybe its a plain old 'crazy' thing, but I digress... -  all the while bearing in mind we'd really like to get there in a reasonable time, hopefully without an MS hitch occurring, but most of all... we'd like to get there... safely, without killing anyone and in one piece!
The last time I drove for over an hour, things didn't turn out so good for me and my MS Monster protested the driving in several ways, and since I didn't listen to it's initial warning (increased spasms) I ended up in pain and having extreme fatigue after having to deal with a 'bowel incident';  (NOTE TO SELF: Things to remember about driving any great distances - a. I must avoid exacerbating any sensory disturbances (we don't need the 'crawling ants' sensation whilst in charge of a deadly weapon car); b. remember not to take any medication as it can, and does, cause sleepiness (although its proving very difficult to find that perfect place between 'rigid leg' and snoring) and c. be prepared to take regular bathroom breaks (if I can find any decent toilets on route, although when MS says I need to go, 'decent' is not even a concern - I've peed in some truly disgusting public toilets over the past few years... MS has a lot to answer for, before you wouldn't even catch me in a public toilet, let alone 'grateful' for their existence, no matter how unsanitary they happen to be, thanks goodness I've learn - the hard way- to always carry tissues and antibacterial spray with me!).  I'm aware that with any journey it is important to take regular breaks, especially for MS'ers who can experience an increase in symptoms when fatigued,  My mother (bless her), who is to be my 'travel buddy' for this outing (after all, all  MS'er still capable of driving need a 'keeper', it really isn't safe for me to go anywhere alone anymore)... anyway back to my 'travel buddy'... I love my mother (really, I do) and she has a lot to put up with, trying to assist me when she, herself, is no spring chicken.  But...
She doesn't always understand the effects of fatigue has on both my body and my mental competency (or perhaps it's that, it's ok for me to be tired as long as it doesn't impact on the result she wants). Her idea of being understanding of my condition, is to offer to 'allow' us to have a break from our journey and 'rest up' in a café she has chosen, which happens to be in a garden centre about 90 minutes into our journey.  What she fails to understand (and I've tried to explain, really I have), is that the act of stopping the car; getting out; setting up my scooter; getting to the café; ordering; paying; eating/drinking; getting back in the car (after putting the scooter away) and setting off again - is all just too exhausting for me!  And... I really DO need a break after about an hour (that's 60 minutes not 90 minutes) of driving  (because by this time, a rest break is needed to stop me from collapsing to one side as my muscles begin to give out along the sides of my torso, this state of affairs seriously interferes with safe driving protocols!).  So I had a great idea (it happens)... I would take a flask of coffee and some biscuits and pull into a lay-by and all would be right with my world.
Ha ha ha...
Things do not always go to plan.
  • Total exhaustion before even beginning our journey
  • Chosen lay-by - extremely noisy
  • Chosen lay-by - excessive exhaust fumes
  • Spillage
  • Guilt
  • Full bladder
Although, being organised (with hot libations) seemed to be a good idea, the execution of said idea turned out to be a less than stellar notion.  Before even starting off on our journey I had managed to exhaust myself with all that needed to be prepared, the simple acts of brewing coffee; filling a flask (after I'd finally found it); cleaned said flask; hunted down a suitable container for milk (why not put milk in with the coffee, you ask... because my mum has black coffee and I have white); packing up some biscuits and getting it all into the car, had already caused the need for an extra rest, and we hadn't even started yet!

More thought was needed when considering where to stop and in which lay-by, as the one I picked was both noisy (hundred of vehicles were passing by my 'peaceful' haven at considerable speed) and smelly (car fumes really are disgusting), also outlook should be taken into consideration, as even though trees are quite pleasant to look at, piles of someone else's rubbish - are not... meaning the 'break' was rather thoroughly unpleasant.

Care, extra care, was required (if I ever attempt this again), when asking my mother to... 1. open a flask (I don't think my mum has dealt with mobile drinking containers for about 50 years, "you just twist the lid to open it, Mum" "I didn't MEAN to tighten it up so much" "pass it here"); 2. pour hot liquid and 3. not burn herself as she hands over the coffee.  All the while putting up with my mother's 'sour' face because she'd been denied "a decent cup of coffee" in a "proper" location, "not that I'm complaining" (yeah right, not much, mum!).  She did approve the choice of coffee cups (and by this point I'm grateful for any 'silver lining' and finally, I'd managed to gain some approval... only the best china for my mum... I'd packed my Royal Albert no less!), which mollified she somewhat.

So here we were, not enjoying our coffee break (I'd have preferred tea, but my mother doesn't touch 'the stuff' and it was too much effort to do both coffee and tea this morning, so coffee it is), and by now I'm feeling tired, twitchy and extremely guilty at having denied my saintly mother out of her beloved café break... for this!  And to top it off... I now need the loo!!!  When I told my mum about my urological needs, I could almost 'feel' her smirk, well she won't be smirking for long if I can't find a toilet soon (ha ha ha)...