And as the panic sets in ……I S*** myself LOL !

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My  view from Ben Nevis and a rather apt message was found under the bridge ….

I lay in my bed …..

arms stretched up above my head …..

my boobs now looking like they used too …

lol …

well in my head they did !!!

you’ll know what I mean if you are probably over 30 and have yo-yoed in weight over the years ,breast fed if you were able  1) to conceive and 2) you could stick at it !!!

I’m hoping I look attractive …..I want to thank Chris for a wonderful holiday …all the driving he did ….;) 😉 😉

but seriously I was caught up in a semi normal moment , but in that moment whether I looked attractive or not was actually the least of my worries……

You see under the smiles ,under the surface of my being, bubbles MS… and I’m frightened …in control but frightened ….

bear with me …

It will all come clear as I take on my journey today ….

I’ve just come back from the most amazing holiday …12 days in Scotland ….

25 years ago this year we took our honey moon in Gran caneria ….

Then we travelled to a few places abroad with a tiny Naomi ….

The holiday packages were fair in price back then in fact she was free lol …So Crete and Rhodes were conquered with friends and family ….

then life for me started to change ……

In some respects our holidays were never big holidays (well to some people) but to me they were massive …

Paris…..

so what do I remember …..

yep ….Its where we got caught up in a protest at the Eiffel tower…. A train trip out of Disney land Paris to show the kids some culture …

I know I did this trip on diazepam …Diagnosed at the time with vertigo and panic/anxiety disorder … (as you know  a full diagnosis of multiple sclerosis now ..what a joke hey !!) …

Ibiza…

Hmmmm….That was to convalesce from life’s (damaging or opportunities for growth) kinda teachings. (There were a few that year ) !! This is where I got caught up with a nutty drunk recovering alcoholic led astray by a woman who we caught trying to drown her partner in the sea …she decided I looked better dressed in her bloody mary and all because  I was trying to help the AA ladies 9 year old son find the hotel bedroom key …..

I fled to sob my heart out in the shower …

humiliated and cross with myself ….. and my gorgeous white dress, that special holiday dress to show off the tan was ruined ….

hmmm….  I suppose I could have said no to the young lad but my son had befriended him as his mum drank away all the hard work she had put into her recovery …

its just who I am …I care I guess and that isn’t deserving of a ‘bloody mary’ attack …

I can’t believe I went through my entire teen years and the clubbing era and it never happened to me ..So for it to happen in front of the kids in a hotel foyer type bar area was so humiliating…

All eyes were on me …… I looked like the girl from the horror movie Carrie …..

You have to be strong as far as alcohol is concerned when you are at an all inclusive hotel I guess…..

Anyway tangent aside and back to holidays ….

A couple of french holidays out of season to keep the cost down in tents travelling  across the length of France to holiday in the south ….we were trying to guarantee better weather but it rained a lot and never rose above 15c ..I wasn’t flying I couldn’t bring myself to do it ….

Scotland …

On a plane before the trip to ibiza to see if i could stomach a flight with hypnosis  prior ….(how did I end up in such a state hey) ….

This was Tom’s 10th birthday pressie and a great time we had up there ….it snowed and was very cold but great fun and we all enjoyed the flight …

Yes I had conquered my fears …it was time to holiday !!!

I was so chuffed with myself ….

Our last family holiday 4 years ago now was to Tenerife ….

now that was special ….and although we had “stuff” going on it was a relaxing, happy place for us all to be together…..

Anyway we (that is Chris and I )always fancied an African safari …

we were doing it when we retired …all the big things we were putting off for retirement !!!!

Then we moved it to our 25th because of the surprise appearance and semi paralyses that MS bestowed on us ….

I could go …but insurance was expensive …and I didn’t relish the thought of an African hospital if a relapse hit me hard …..no disrespect ,but we all want home when we are poorly …family friends.. our own bed …our own language ….its comforting …..and the only way to heal the emotional turmoil set about by a relapse…

So Chris let me loose on exploring Scotland and the places that hit my buttons and excited me ….

A road trip was in the making…

The plans were coming together …

Scotland was exciting me …..

We simply couldn’t wait …..

Well we had some fun sorting out how the fridge was going to keep my meds cool …the bloody thing  buzzes on and off enough to wake us through the night and on top of the noise issue Chris had to fit a split charger so as we drove we stored power… he also proudly sourced a second hand solar panel for when we were based without hook up  …

so with all bases covered we confidently headed off ….

We also had a loo on board ….

no being caught on the hop ….caught short with embarrassing consequences…

That happened in Loch ness sadly …

(it had also happened back at the side of the road on top of dual carriage way  out of  lyme regis …

there I had an urgent need to poo …

yep the number 2 …

I was in pain and urgent …no real warning….

but my friend who’s car had broken down was supportive and helpful …I dug a hole covered my business and slid back down the bank relieved but embarrassed )…..

she joked about what happened at the side of the road stayed at the side of the road … I had to laugh really ….

but still I was on a slippery slope …

a noticeable change …dignity on its way out of the window …

I knew something would need to be sorted …I was starting to take note of where loos were and getting anxious if I was away from the house ….this wasn’t right …..

Anyway setting the scene back in scotland ….

I had been queuing with a load of Chinese sightseeers to have my picture taken at the ed of pontoon heading out into Loch ness …god they take a lot of pictures but I stood patiently waiting waiting waiting …WAITING !!!! took my picture turned on my heals and froze ….

I had walked back to Chris  but found myself rigid with fear ….

Chris was already walking away with Jackson….

he was confused as I started talking weird nonsense …(well to him it was )

“ohhhh no not now… please don’t come out “…..

“Help I need the toilet Chris “….

I dared not move ….the pain in my stomach griping, sharp…it made me feel sick ….

Good God were people looking at me knowing what was going on …..my legs firmly crossed buttocks as tight as well god knows what and my body weight drilling down onto my walking stick ….

Chris came to me helped me move …

I never made it back to the van …

I dived into a cafe the staff growling as I headed to the ladies room without buying any cake and coffee, but I was on a mission  ….

what a relief to lock the cubicle and sort myself out ….I stayed in there for ages exhausted confused embarrassed ….ashamed… upset…..

This was becoming a regular issue and something I knew would need to be raised with the MS team ….

Intimacy with Chris ….well its changed there is no denying that  …its not only that intimate time we have with each other (you know what I mean) because even that goes numb ….Its all very demoralising upsetting confusing ….  its also about our individual  health and wellbeing …  honesty between us both  with a load of patience compassion and understanding is what is needed now …..we have got this …because we are strong ….

Whilst on holiday Cake and hot chocolate went down a treat whenever a coffee stop was required because using a loo goes with a coffee stop !!! ……you see I can’t swallow properly at the moment …Dysphagia is the medical word ….

I have oropharyngeal Dysphagia…medically that means  the tongue has lost sections of sensation  and doesn’t always recognise it needs to propel the food down the oesophagus (the tube that carries food from your mouth to your stomach)…..I’m in the category where a stroke, parkinson’s ,dementia and motor neurones along with MS can have this issue ….Its the damage done to the nervous system in the brain and spinal cord that have interfered with the nerves responsible for starting and controlling swallowing…..

It won’t get better… just gotta put coping strategies in place  …

My coping strategy is cake as its soft and I like to wash it down with a mocha lol ….

I dread the day a tube may be required …but I won’t go there in my head space for too long as its frightening ……

I came back from the holiday bursting with happiness…  my head full of wonderful images that I will hold close to my heart ….

I pooed in lochness and I fell down a path in the lower sections of  Ben Nevis ….HHHMMMM well mountain walking … that was an epic fail !!! legs through fatigue just stopped walking …..

I”m not the girl I once was …..I have MS …..

we had conquered many holiday issues together …

well conquered is an overstatement …more nursed ourselves through them ….but it was  done together ….

The support from Chris was and always is second to none ……

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my man and me ….actually my rock and me !!

I came home to a cognitive report which left me in tears …..Chris was moved by the problems it foresaw ……

A collective scoring, general memory index of 76 which sits within the below average range  of the normative population, demonstrating several areas of cognitive difficulties….these cognitive changes have occured  because the demyelination of the myelin sheath that is responsible for these processes  has been damaged….

So as the panic sets in ..

the fear creeps over me …

my mind and body becomes somewhat estranged from the person I know as me …..

and I literally shit myself !!! hypothetically and literally speaking !!! I am honest as I know I need to be !!!!

I am grateful for small mercies …

I am alive and I saw Scotland in all its glory …

Funny though because  Scotland  saw me in mine !!!!

We’ve got one life and we have to live it whatever challenges are thrown our way ….

love and light kirsten xxxx

 

 

 

 

 

 

 

 

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1 thought on “And as the panic sets in ……I S*** myself LOL !

  1. Raw honesty. Xxx you are both rare and very special. Xxxx

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