I looked down just now to check that my catheter, which goes into my abdomen about 2 inches below my tummy button, was ok. It looked like I’d been stabbed, there was so much blood in my pants, and of course totally painless to me.

Anyway, largely kinda wiped off now. I suppose it just had to all work it’s way out of me.

My front tooth also fell off yesterday… it being a veneer/ crown thing fitted 4 years ago ( and apparently indestructible …. yeah right ) so I glued it back on with superglue, As there were 2 pieces and I’d already glued the bottom bit before I even found the top bit, it’s not exactly perfect, but it’s passable ( from a distance ).

All in all an eventful 24 hours of bodily malfunctions then.

On the upside we saw Sigrid the other day in Brixton. Wow what a talent she is. If you go to one gig this coming year, go to see her. Just going from strength to strength. Having seen her about February time previously, she has transformed into a superstar in the making

10/10 for Sigrid- best artist this year, for me.

I got my wheelchair back! I never thought I’d be so pleased to see a bloody wheelchair, but yes it seems that’s the way it is now.  They got the broken seized on wheel off and I have a spare wheel on there, and blimey it’s far better for it. I’ve realised that the broken one has been breaking for a long time, in retrospect, making the ‘ ride’ not great. With a change of wheels it feels very different.

That positive had to lead to a negative of course, and that came with the catheter change that I had today. I bled a lot internally, the catheter blocked with clotted blood and I was stuck with a full bladder and no way to drain it. Thankfully the nurse came back out to my flat within an hour, and resolved it, to my huge relief. Thoughts of ‘ here we bloody go again ‘ were rampant in my head, but actually not this time.

I have to thank my close friends for their love during a difficult time for me, and my parents and brothers, but most of all Wendy, who is a definitely a shining gem.

Thanks too to Fanny, who without knowing it also helped.

Big kiss for Fanny then.

So I’ve had my lil pet for almost a week now. She’s a pretty lady budgie, white with blue breast feathers and some yellow here and there and I’ve have called her Fanny.

She and I are bonding slowly, but you can’t rush these things, can you? I think it’ll take a while for Fanny to let me into her trust, but with a tactic of lots of smiling and gentle words, I hope that I will be able to stroke Fanny soon.

For now I smile as Fanny flaps around.

Fanny flaps loudly for a little bird, and the cage is big enough for her to fly a fair bit from perch to perch, and have a peck at various things I’ve put in there.

She has a bird bath so Fanny can get wet, though she hasn’t yet. Or maybe that’s what she does in private, when I’m not looking?

For sure I’ll look after and love my little pet, and definitely take Fanny’s maintenance seriously.
She’s in safe hands!

Now my wheel won’t come off so the whole chair has been taken away to a workshop. They gave me the world’s most basic replacement chair which makes it impossible to go out now.

Blimey, if this had happened a few days ago, I think id have fallen apart completely, but I’ve definitely rallied a bit, so won’t I think, but I can’t now go to a gig tonight or a course tomorrow.

Bloody hell.

So I’m en route to visit my psychiatrist, when two of the 3 struts to my left wheelchair rim snap. There follows a long and slow trip home with a constant clanking and creaking, and risk of the chair collapsing altogether – a touch psychologically stressful then… not what I expected ( but exactly the opposite )  from a trip to the psychiatrist.

I’m stranded at the moment therefore, but as it happens they are coming to service my chair tomorrow… and will bring a spare chair  in case they can’t replace my wheel ( as as well as being broken it’s also jammed onto the axle, and has been for a while.. )

Not exactly lucky, am I ?

My brother, Stu, sent me this picture of him  

He’s like a cross between Indiana Jones and something off Lord of The Rings.

My lung hadn’t changed btw, and he recommended inhalers to help my voice and breathing, so let’s try that then.

I didn’t realise I hadn’t written anything for a week until a lovely  friend texted me to ask what the score was

I think that when I’m down it can manifest in apathy, including ‘ bothering ‘ to write anything here.  My memory has also seemed to desert me too, I’m forgetting all sorts of stuff that I classed as engrained in my brain

The news is that I’m home, and have help to make that possible, courtesy of a lady called G who is helping me. My stay in hospital definitely led to an almost complete lack of positivity, that almost led me to the end of my road. I’m still definitely not ‘ ok’ but I’m better than I was a week ago for sure, better being defined as actually wanting to bother being alive. I’m struggling to ‘ be myself ‘ with full awareness of my being very subdued in every way.

I’m engaging in counselling though, to see the light in the dark and we’ll see what happens.

Yesterday’s trip to the theatre was a bit spoiled by the torrential rain in London- jeez you get wet when sat down rather than standing up. I’m not sure whether my ‘ mood ‘ made the play not very entertaining, or whether if I saw it again I’d really like it? I’ve liked all the other Pinter plays I’ve seen, a lot..

ive had my wheelchair semi serviced which has improved my posture a bit, though I do need a new one. That doesn’t happen quickly though so it’ll be the spring before I actually get one that’s made for me ( measured and suitable for me) I think.

Today I saw my lil brother and Mandy – thanks for dropping in, as in driving from Wales (!) and have had Wendy here this weekend, being her lovely self. What a totally giving and sensitive girl she is. I’m lucky to have her in my life, for sure

Tomorrow I have more medical appointments, including the results of that lung scan I had recently. I’m definitely aware that my breathing is shallower, and my already weak voice is of late weaker still, so something is up I’d say.

Im forcing myself to exercise, with the various means I have for that, and bought a speedball to punch. Wendy and I attached it to a wall- her first encounter with a drill, but she excelled as always. Yes, it’s still on the wall, and have used  it every day ( 3 days in total mind ) It’s obviously fitted low down, too low for another person to use, unless that person is a boxing midget of course. Thanks to G for the loan of her (pink ) boxing gloves which have saved my knuckles for sure, and go with my metrosexual gender neutrality

In the endeavour of keeping on keeping on, we are going to a gig tomorrow in Brixton that I booked ages ago. Sigrid is 18 and so very talented.

And I now have a pet.. a little friend that’s  non judgmental etc. She seems to be warming slowly to me, though her activity isn’t yet at normal speed I’d say , as she gets used to her new home.. watch this space for pet updates then.

🙂

I took the proactive step of talking to professionally qualified people about how I was feeling, and the thoughts I was having. Even whilst doing it I was thinking ‘ this is pretty pointless because it’s not going to change anything ‘. But actually it did ultimately help, and the worst passed again, the worst being my own little Jiminy Cricket telling me how pointless my being alive was.

A few days later I’ve done quite a lot of worthwhile things and I’m glad I was around to do them.

I saw my surgeon on Friday and well, either he’s an EXTREMELY good actor, or ( in his opinion ) nothing has moved in my internal frame. His positivity about my skeletal state was definitely reassuring to me, and we also established that my 5 year old wheelchair needs replacement, as it is breaking, and has been breaking,   for some time.

A new and therefore more rigid chair will give me support in the right places, combined with a new seat cushion that fits my arse, and a curved back rest that supports me properly. As I can’t actually feel the seat or thé backrest all I get is the outcome of how they fit me rather than the actual feel of them. I therefore know they aren’t right from how I appear to struggle in them to be upright, rather than being able to actually féel the problem directly.

Wendy and i saw a band too – The Feeling. I think I’ve realised that whilst being ‘ big in Chiswick ‘ they aren’t anywhere else. Anyway they were ok, in a packed with Chiswick types Shepherds Bush Academy, no one really getting very animated except for the quite vocal gay following they have, which was very amusing. Freddie Mercury may be dead, but his disciple wanna be’s live on and were in Shepherds Bush at the weekend.

After the gig we went to a bar next door. Never have I seen such a juxtaposition of ‘ letting yourself go behaviour ‘ in 2 different crowds separated by 50 feet of street.  One crowd was, well… ‘ very contained ( like the headmaster was watching) ‘ and the other was actually having a laugh, dancing, laughing, and extremely friendly with it. It’s been a bit since i had 3 people fall over my wheelchair in one night, had my drink knocked over, and been talked to by so many people I’ve never met.

It made me miss my iBot which no longer seems to work, but that I’ve not given up on. Jeez that thing made gigs SO much better. Today I’ve had a go at getting it working and it does seem to accept electrical charge, but won’t function properly. It just makes a lot of alarm and malfunction noises instead… which makes it not do what it does when working ie stand up on 2 wheels etc.

As a strategic manoeuvre I’ve decided to get a pet … for the company to a degree, but also because to have something that’s reliant on me means you have to stick around.

I imagine that’s what kids are for too, as a rule

Also my proper exercise brain is kicking in. I am very limited as to what I can actually do, and almost everything has to be with one arm at a time, but you do what you can do, as you can’t change what you can’t change. I’ve redeployed my arm grinder machine ( yes I’m home with help temporarily) and I’ll do / am doing a fair bit of strenuous ( non weight bearing ) exercise.

I have a CT lung scan tomorrow to see if that thing in my left lung looks worse ( probably curtains if it is ) but I’ve bought people Christmas presents in advance this year, just in case!

My sincere gratitude to the amazingly lovely Wendy for all of her compassion and help recently. For the record Shes a total star.

Thanks too to thé quite a few people that seem to be looking out for me, including my ( worried ) Mum.

❤️

As I’m fairly sure that I’m breaking internally again ( too many times lugging my Paralysed bits around beds/ chairs etc ) so my spasms have returned with a vengeance, and so my thoughts turn to hopelessness and resignation,  with suicide becoming extremely tempting again. It was so easy to do last time that it holds no fear for me at all.

Ive been x rayed to see if I am actually coming apart as I suspect, and I’ll know tomorrow I think. I did go on and on about them treating my body gently post surgery for a while, but my voice was ignored and I went with their insistence to move —everything involving lateral shearing forces- that now all of a sudden they are telling me not to do, in case it causes breakage……. So why did they insist I do it in the first place then?

I don’t  write about my 2 daughters often do I, having opted to ‘ keep some things out of my diary ‘ but let’s face it I talk about everything else that’s personal without hesitation. I think about my daughters so often and it’s truly heartbreaking that I don’t see them, or even hear from them. I often send them messages but they are ignored. I wonder what it is that they think about me, what’s so bad about me that they cannot find enough heart to get in touch. They live 20 minutes from me, which is cruelly close, yet may as well be on another planet in terms of frequency of contact. People I know have written to them, but all is ignored. What/ who do they listen to i wonder, that keeps them topped up with such contempt for me?

I’ve seen a clinical psychologist whilst here in hospital, and I’m an open and honest book   I confess to my many sins for sure, some of them clearly humorous to the doctor ( well I imagine they get told all sorts of evil things that make mine seem ok )

As my spasms persist I think of the easy exit route increasingly, and realise I’ve been actually hovering here for some time. I do have strategies for moving my mind on, but when you’re down it becomes very tempting to let the thoughts flourish and take you down the Path of No Return

No one would notice on Halloween- I could just bleed slowly to death in the street and people might look on in admiration, marvelling at the copious amount of fake red stuff pouring from me.

Happy Haloween from me then.

X