Mid-Yank...

METHOD

 

DISASTER STRUCK...

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.

 

 

 

RESULTS

 

• an emotional meltdown
• a useless scooter, still in the back of the car
• tears
• apprehension
• worry
• fatigue

CONCLUSION

 

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...

 

 

 

 

TOGETHER WE ARE STRONGER! 

 

Nesting... in Autumn?

METHOD

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.

 

 

RESULT

 

• 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

 

 

CONCLUSION

 

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!

 

 

TOGETHER WE ARE STRONGER!

 

 

Driving Made Easy...

METHOD

 

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.

 

 

 

RESULTS

 

• Total exhaustion before even beginning our journey
• Chosen lay-by - extremely noisy
• Chosen lay-by - excessive exhaust fumes
• Spillage
• Guilt
• Full bladder

 

 

CONCLUSION

 

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)...

TOGETHER WE ARE STRONGER

 

Logical Recipe

Many (many, many) years ago, I remember having to write up my physics lesson following a certain formula (I wonder if everyone did).  You had <method>, followed by <results> and then <conclusion>.  So I thought I would follow along with this logical recipe.

 

 

METHOD (or in this case CIRCUMSTANCES)

 

As I've mentioned before my family own and run a caravan park in West Wales and even though my parents are in their 70s it was only at the beginning of the summer, early this year, that they finally gave up running the clubhouse, and let out the bar to a lovely young couple.  My mum and I have always run the various entertainment aspects of the clubhouse, but with new managers this task has fallen to other, younger and fitter organisers... or so we thought!  It turns out that experience is still greatly valued by the young and apparently my comparing skills are still required... and for some reason everyone, except me, become either a gibbering mess or a total diva when presented with a microphone. 

 

So... Saturday saw me overseeing a children's Team GB Sports Day (I managed to last an hour before I'd had enough of handing out medals - pretty good going, I thought). I then rested (that's another word for 'slept') for two hours before my wonderful son made me some food.  Saturday night's disco was next... problem? By the time I had changed ready for the evening... I was too tired to go out, and my legs had decided "no, we're not moving".  So instead of getting to the disco at 7pm, I managed to drag myself downstairs (I live in the flat above the clubhouse - noisy? yes, but at least I never feel alone!  Every cloud has a silver lining, right?) at 8.30pm after another well deserved and necessary - rest. 

They sat me in front of the disco, with my trusty mic and I rattled off raffle numbers, whilst my mum handed out the raffle prizes.  Then (no, I wasn't finished yet), I called up various children in a prize giving ceremony for the winning contestants from the afternoons sports day; handed out envelopes of money and my mum pinned a variety of children with rosettes, trying to avoid stabbing any of them in the process. By this time my bladder was screaming at me for release and my tena lady was getting wetter by the minute!  Time to go.

Could I get my leg to bend in order to get on my scooter to take me back to the stairs?  Could I hell!  Bloody spasticity... if I take any more 'Baclofen', I'll either fall into a puddle of human soup or fall asleep on the spot!  My son, seeing my struggle, didn't waste words and simple picked me up and carried me back up the stairs, he then left me to get undressed for bed whilst he made me  a cup of tea and then abandoned me to go back to his pint!  So concluded my Saturday nights activities, and to think it was only two years ago that I would of been dancing and drinking with the rest of the rabble-rousers!

 

How was my night's sleep? (I hear you ask!  Well I'll tell you), due to a recommendation from my GP, my 'Baclofen' dosage had been upped overnight (a bigger dosage was required due to my leg's increase in stiffness and hopefully taking it overnight would counteract the effect the drug has on making me so tired that I sleep the day away!), however, the only thing that the increased dosage managed to do... was give me cramp, meaning I had to jump out of bed (jump! ha ha ha).  In turn the 'Baclofen' then kicked in, doing its job of  reducing my leg stiffness - to such an extend that my leg wouldn't hold me up and I promptly found myself sprawled across the bedroom floor... wondering "how many bruises this time"!

 

 

 

RESULTS

 

Team GB Sports Day - a success with lots of happy children, stuffed full of sweets, hot dogs and lollies and even though the exercise has been good for them (so nice to see them using more than just their thumbs), I am exhausted and fatigued due to overexertion. 

• I am 'wicked' on the microphone.
• I cannot stand when tired.
• Tena lady's get wet
• 'Baclofen' counteracts spasticity and stiffness, but doesn't let you join in with the drinking games :(   and too much results in bruises!
• My son is strong enough to carry me upstairs.
• Floppy leg!

 

 

CONCLUSION

 

MS limitations need to come before other people's expectations.  I need to accept, that I simply can't do what I used to do, and stop trying to do too much, because if I don't pace myself... I'll miss out on everything!

 

Children need to do more exercise... I DO NOT.

 

I need to buy more absorbent Tena Lady's or invest in adult nappies!

 

My GP doesn't know what's best for me, only I do and an increased 'Baclofen' dosage needs to be monitored more carefully.

 

My son is the BEST.

 

I am jealous of all those people who can dance and drink, but it's nice to still be wanted and needed, even if it is only for my microphone skills, it seems everyone else is scared of it or won't get off it!

 

Accepting this new version of me... is hard, but I still have a life to live. Laughing at myself helps.

 

I still love myself... 'cause I am awesome.

 

Falling out of bed... hurts!

 

 

 

 

 

TOGETHER WE ARE STRONGER!

 

 

The Beginning...

So, I decided to blog about my MS... why? because the simple act of writing 'it' down is very cathartic for me.  If you have ever experienced this condition, you will know, you have to do whatever helps in order to get through each day... so I'm hoping this will help me...

I'm, Karen...

 

(April 2016)

Yep, that's me... just an ordinary person, no-one special.  I'm not particularly good looking; I'm not super-intelligent; I haven't invented anything or made a name for myself... I'm just me, ordinary, average, everyday... me.  Except, I was (finally... but, that's another story) diagnosed with progressive MULTIPLE SCLEROSIS (not to be confused with 'relapsing remitting' MS - I never get a break from this debilitating disease!)

 I supposed I should give you some background, but I think that'll come as I write more... so if you want to know me... you'll just have to keep reading as I unload to the world!

I will say... I was diagnosed (after a hard fought time with the NHS) in Sept 2014, after various tests, waiting for results and bouts of worrying (what is wrong with me?) and hoping (they maybe able to fix me, but not before they know what's wrong!).  The bad news was of course, that my MS was of the 'progressive' sort and therefore, "here is nothing we can do for you". Well, thanks for nothing!

ME: I'm divorced with two grown-up children.  I live in a flat (not ideal, but hey ho, beggars can't be choosers).  My family owner and run a static caravan park in Wales, we've been here for the past 30 years.  I live in one flat (above the clubhouse), my mum and dad live next door, my son (he works on the caravan park as a general dog's body manager) lives in the flat above mine and my daughter is an early years teacher, she works and lives in England.

MY MS: I have lots of moaning to do... but I won't overwhelm you with it all at once (I'll save some for future posts!).  Needless to say my 'progressive' state has progressed...
 
I have a few health issues (thanks MS - you'll probably read a lot of sarcasm in this blog, it may be the lowest form of wit, but I'm still glad to have any kind of wit at this stage!), I will name but a few...

• FATIGUE   -   its NOT tiredness (or being lazy), see 'spoon theory' it will explain it better or listen to this on how 'The Spoon Theory' was born.

·         BLADDER/BOWEL PROBLEMS   -   ooohh, these difficulties can make the difference about whether you want to live or die!

·         PAIN   -   neuropathic pain is so REAL, and something few MS sufferers do not experience in some form or other.

·         SPASMS   -   no explanation can do them justice, they are the worst!

·         SPASTICITY - (rigidity/stiffness) mine is mostly my left leg, so difficult doing anything when your leg is stuck in one position and will NOT move.

·         SENSORY DISTURBANCES-ABNORMAL   -   have YOU ever feel that cold water is dripping down the side of your head or ants are crawling all over you or constant pins and needles throughout your body?

·         SENSORY DISTURBANCES-PAINFUL   -   the 'hug' (not as nice as it sounds!) or freezing cold that cannot be warmed?

·         MUSCLE WEAKESS   -   until your body can no longer support itself.

·         COGNITIVE CHANGES   -   memory relapses (who am I?), confusion (what am I doing?).

·         DEPRESSION   -   I am dying a slow, painful death... but I'll keep smiling! (and there's that sarcasm).

·         There are lots more, but I'm getting depressed listing them, so I'll move along...

One thing that I've found that helps me cope in times of stress (stress... a very bad thing for MS'ers, it will exacerbate everything in a bad way and make it all SO much worse... avoid, avoid, avoid!) - is online support groups, particularly, for me, a Facebook group - The UK MS Support Group.  The like-minded people there have rescued me from deep depression on a number of occasions!  This was my last cry for help post...

24th August 18:25

Feeling sorry for myself 'cause progressive MS sucks!!!

People with progressive MS have a different illness -- physically and emotionally -- than other MS sufferers.

There’s no new treatments!!! Advanced research, medication and new testing is not for the likes of you! Progressive MS sufferers feel left out by health care professionals and researcher -- we are told... ‘we can’t do anything for you.’”...

The experience of progressive MS itself is different, too. Unlike people with other forms of MS, who have attacks followed by symptom-free periods, people with progressive MS are living with a disease that steadily progresses and worsens...

There’s no “bright side” to progressive MS.

Signs: While there is no definitive timeline and not everyone will experience each symptoms/problems, the following are some of the things which may happen with progressive MS (look what I have to look forward to...)

 1. Breathing: shallow and ragged sounding, laboured, many bouts of pneumonia (tick to the breathlessness, oh goodie pneumonia!)

2. Swallowing problems that cause choking on food, fluids, saliva (tick)

3. Worsening bladder and bowel problems, having a permanent catheter. (tick...TMI pooped myself today... bring on the nappies)

4. Pain starts or becomes much worse, and the person needs strong pain meds, such as morphine or fentanyl patches. There can be very dangerous drug interactions with the MS drugs, anti-depressants, sleeping pills that can slow the heart and breathing to life threatening levels. Drug addiction can result as well. (tick to the first part... drug addiction doesn't sound so bad about now)

5. The drugs and/or the MS make person more disoriented, lack of focus, crying out in the night, not sleeping through the night, needing more and more assistance from carers because they are uncomfortable, need a drink, repositioning, more pain medication.(what sleep, what carers)

6. Changes in mental attitude, worsening depression, forgetful, worried, anxious, confused... (tick)

7. Having a feeding tube. (I'll save on washing up)

8. Needing a respirator. (It'll be easier to give up by this point!)

9. Needing 24 hour care.

10. Many more trips to the emergency room and hospital stays for any of the above problems, and/or infections, low electrolytes, low blood oxygen, low pulse, and more.

Oh, yes... feeling VERY sorry for myself and all the poor people around me, who have to watch my slow decline into human jelly! No more reading up about MS for me!!!

Within just a few minutes I had people (strangers but fellow sufferers) offering support and advice, helping me through my MS blip and making me realise... I am not alone, there are people who do understand what I'm going through, who sympathise and offer whatever support they can!

 

 

 

Together We Are Stronger...