I thought I’d record how a typical ( if I can use that word now ) 24 hours might pan out for me, and I’ll use the last 24, now that the 24 is up.

 

So last night  3 people came to our flat for dinner ( Mark P plus the 2 very lovely Doctors, Mike and Steve, that I met in Louisville, USA, now firm friends )

For a few hours, I was able to enjoy the social interaction, the clever company, the good conversation ( and maybe 2 glasses of wine )

At about 10.15 the spasms started, my legs jerking, my abdominal area sort of vibrating.

It makes concentrating on anything else quite difficult, to be honest.

I had to excuse myself prematurely, to go to the bathroom, whereupon I guessed that perhaps the  spasms were indicative of a need to ‘sit on the loo’.  I can’t actually feel the normal sensation of a ‘ need to go ‘ so have had to develop a 6th sense almost ( which is sometimes right, sometimes wrong, and sometimes too late )

There I stayed until maybe 12.15 am, long after Dani had said goodnight and gone to her room.

From loo seat, to wheelchair, to ‘shower seat’, shower, drying of some parts, back to wheelchair, further drying of other parts, the swallowing of so many pills from so many bottles,  to transfer from wheelchair to bed.

Sleep?  No.

Spasms restart shortly after, continuing for as long as I remember, my eventually falling asleep stopping that particular torture, but waking at 2.30 and 6.30am to have to catheterise, my spasms being so violent that I wake.

I don’t go back to sleep after that, and get dressed on the bed ( how else can I do it ) having put some clothes on the side that Dani used to sleep, before I transferred in.

I have my usual spartan breakfast, and get some help into my car, and drive to work ( a little zombie like ).

I park up and then talk on the phone to the lawyer that I’ve had to engage to negotiate me through the legal processes that are happening at work, which lasts for 90 minutes. All the way through the complex conversation, my legs and pelvis jerk violently in my car seat, but I force myself to still concentrate and speak coherently.

I phone someone at work, who comes out to help me from my car, and wheel in to the practice. There I sit in with my lovely student, helping her  in the course of her patient list, and giving both her and her patients the ‘benefit’ of my many years of experience, which is certainly of assistance to them all, at least giving me a sense of worth.  My spasms don’t stop until about 4 pm, but the distraction of work and company reduces how much they upset me.

I leave by 5pm and drive on the M25 and M4 with the Rush Hour traffic, to my home, and get help from my car an hour later.

The plan is to go the 200 metres or so to the launch night of a local catering business at 7.30pm, where I would brave a full room of people having fun, upright.

By 6.15 my spasms have started again, and I contemplate a social event where I’m the only one sat down, and definitely the only one sat down and uncontrollably shaking from the chest, down.

I decide reluctantly that I shouldn’t go, that no one will really understand why I might appear and come across as distracted at a launch party that, after all, I have willingly gone to. I mean, who goes to a party when they’re feeling like crap, unless they’re maybe obliged to go to a work event, or family occasion?

Dani  seems very happy to go, without me,  and I am left alone with my thoughts ( and my tremors )

I have to catheterise more often than usual, when  I’m spasming, as wetting myself occurs more frequently , but tonight they are proving difficult to insert. There’s no pain, as I can’t feel anything, but  any man can sympathise with a reluctance to jam something hard into his penis, so I try not to, and it takes for ever.

I feel so down, it’s awful, and the tears roll down my face yet again, a mixture of despair and frustration.

I decide to have some alcohol to perhaps mute my senses a bit, and it has soon become a full bottle of ( fairly decent ) wine.

After an hour or so, I get a message from someone offering to come over and give me a hand to the party, but that person never comes, I think having misunderstood my response. I really don’t want to go the, albeit short,  distance in the dark and arrive alone to a crowded room, so I spend the evening alone after all .

Actually  the alcohol seems to help, and I feel less sad after a while . I text Pia, and she lifts me a little, and distract myself with emails.

Dani gets back at about 11pm, and says it’s a fun night.   There were lots of people there that I knew, she said, but that everyone was standing up and it would have been hard for me to  interact properly.  As it wasn’t forthcoming, I questioned  whether anyone had asked after me and wondered why I wasn’t there,  and she said  that lots had, and a few had said that they knew I’d been having a rough time recently. That prompted me to ask whether any read my blog, as far as she knew.  Dani then proffered that some people ‘were quite principled ‘ about that, and said that ‘they didn’t, preferring to talk to me face to face ‘

I get that response quite often ( where a person might ask me how I am when they bump into me ) What am I supposed to say? That I’m great, never better? So I try to suss out the situation, and ask if they know I have a blog, as my ‘story’ is a bit complex . Usually the person will say that while they know I write a diary, they would far rather they talk to me to personally.

So then I ask when was the last time they did that ?

Which usually leads to an awkward silence.

 

Which I don’t think is a situation of my own making, just how it is.