Monday, July 30, 2007

Not bad for a monday.

Gradually getting over the shock of friday really got to me it did. Feel scared shitless and totally calm at the same time.


Friday evening smoked several j's to get over the fright and for the pain in neck, shoulders and back.


Saturday we were not as bright as the weekend before but still went down to the Ten Kate market for fruit and vegetables.


And a couple suriname rolls at Surina my favourite Suriname takeaway. Richie had two tempe rolls and I had one with pom (suriname curried chicken and cassave baked in the oven) and one with saltfish.


Saturday evening we tried our best not to worry too much about how to cope with the latest development of me hanging over the back of the wheelchair.

Richie wanted to give up working and stay with me to make sure nothing happened to me. Persuaded him for now that even if he watched me all the time he and I can do nothing to stop the spasms.


The weekend was pleasant but we were both worried about today, what would it be like for me being home alone. Well it turned out well, my carers came at 10.00, 12.00 and 14.00, Richie
called me at 11.00, 13.00 and 15.00 and inbetween our neighbour Willes called from upstairs to check I was ok.


Rona from Zorgthuis called to say she was glad I sent her a set of keys, I also gave her all the important telephone numbers. Told her we were getting an alarm installed on the 23 of August, its mainly for burglary, fire but I get an alarm button to hang round my neck.

If I press it the call to check I am ok. If I am not they call Richie or if appropriate an ambulance.
Feel very reassurred after today that we have covered all the bases we can.


SO not a bad day today plus my new phsyio came by, she will be coming by twice a week which is brilliant. And on wednesday someone from the CIZ will come by to discuss other aids I may need and if I am lucky they may advise the council to give them to me.


Wednesday the stand up wheelchair for a weeks trial, hope the company can help me get one from the council would be great for limiting the sopasms, circulation and general good health as well as prevent sores from sitting down all the time. Fingers crossed I get one.


So got through Monday and better than I thought great stuff!

Friday, July 27, 2007

Another horrible shock





My 12 noon carer came and as I was rolling backwards to make the turn into the hall to open the door, I had a strong spasm which pulled me backwards.

Tried to pull myself upright right away but too late was already beginning to flop backwards over the wheelchair.


Fucking horrible and very scary. Could do nothing to get back upright could just see Melitta through the window in our front door.


She did not seem to understand that I could do nothing to change my position as she was trying to encourage me to open the door.


Would have loved to open the door but there was no way that I could move as the chair was tipped back


Called out Richie's mobile tel. nr to her and asked her to call him and tell him to come home right away.



What seemed like centuries later Richie got home and pulled be back upright in the chair. I was running with sweat totally boiling from the exertion of hanging backwards over the wheelchair.



A nasty surprise for such a beautiful summer's day.



Oh well tomorrow is another day and it's bound to be better.


Happy days!!

Thursday, July 26, 2007

A better day


A better day today, my 10.00 and 12.00 carers arrived without any problems with the bell.

My new doctor came for her second house call, once a month ago to register me and today to see that I am ok as well as to take a swab to check for a possible yeast infection.


Very sympathetic doctor, seems keen to be supportive of me which is great. Sadly as she was taking the swab the doorbell rang before the doctor could get to the door whoever had been there was gone.


Cos I suspected it was my two o'çlock carer I called the office to tell them there had been no attempt to check I am ok.


At three the woman who should have come at 14.00 called to say she had been and could not come again. However she promised she would in future call me on the phone to check I am ok.


Hope they all do would make us feel better especially my darling Richie and of course me cos it was not so nice sitting in wet clothes for hours.


Today has been joyous since my darling came home despite everything we love each other very much that's my ray of sunshine. That and my lovely friends.

Wednesday, July 25, 2007

What a day!!





Today started good the sun was shining and summer was back in force. At 10 am Melitta from zorgthuis came to help me go to the toilet and get washed and dressed.

All went well except just as she was leaving I said I think I need to go to the toilet again, but she had no more time, we agreed the incontinence pants would absorb it all very well should I get caught short.

And it did and had the 12 noon person come at the agreed time there would not have been a problem. No one came at 12 so I phoned the coordinator, she told me that someone would be round between 12 and 12.30.

And just like last week and in fact all the other times recently when no one turned up we had a conversation about my bell, and again I told her that my bell was not broken, noone else seemed to have a problem ringing the bell.

Could not believe it when she mailed me last week that it had been a shame for Ingrid that I had not opened the door!

A shame for Ingird? What about me then? She is not the person getting the help and care that's me. Surely if she does not get a response she should ring me as I could have had an accident.

Fancy that eh, you work as a care assistant/nurse and you arrive at a client's home and no one answers the door so you just go away knowing the client is in a wheelchair and can't do anything for themselves

So I sat here patiently waiting and noone came at 12.30 so I called the office again but no one was there all out to lunch.

Then at 13.00 I suddenly started to piss there was nothing I could do about it, it just happened. I had no control and how could I when I had been waiting deserately for hours to go to the toilet.

Called Willes on the 4 th floor and left her a frantic message along the lines of help please bring some old newspapers to put on the puddle on the floor. She was down in a flash with an old sheet.

At 14.00 no one turned up again, this time Willes phoned for me and enquired why no one had come at 12.00 and why no one was ere now? Rona said she can be along any minute if no one shows by 14.30 ring me again.

We did and 14.30 she promised to get someone round as soon as possible. At 15.00 someone came, in fact the person I had seen monday morning and had thought
to see twice on monday but who monday too had just missed me out at 12 noon. Luckily Richie had been here all the other times recently when I had been let down.

Today was horrible, my lovely neighbour Willes's company made it more bearable and at 15.00 a good friend Jeanet turned up as well which was lucky as I had to explain again how to put the lifting harness around me safely.

Poor thing got it wrong time and again, luckily Jeanet was there too and although she had never operated a hoist before she worked out how it all worked and between them got me airborne and washed and dried and wheeled through placed on the bed and between them dressed me.

Glad Jeanet was there and between them it went well. Was recovering in the front room with Jeanet when Richie came home.

After we both recovered abit over a cup of tea and a medicinal j we set off in sunshine for the Vondel park with the dogs. An excellent way to end what had not been one of the better days.
Really enjoyed seeing the dogs run, jump,swim great stuff and suddenly the day got a different character.

Tuesday, July 24, 2007

Going up the Kinkerstraat






despite the rain had a good day went out briefly for an hour on the speedy, just up the kinkerstraat and over the ten kate market.

fucking brilliant to be able to move around without being pushed. it was all very damp from the downpour which looked like it was going to go on all day.

had lots of pretty painful spasms as we went along but great to see that they did not stop me going.

Monday, July 23, 2007

Spike and I

Since I have been getting bad spasms poor Spike can't jump up on my lap anymore for a cuddle as that sets off the spasms.

As he is a dog I can't explain why his daily cuddle sessions had to stop result depressed dog.

Recently discovered that when I am on the bed he can jump up next to me and we can have our cuddle session back.

Spike is back to being his usual happy self now his cuddles have been reinstated and I am happy too.

re lovely neighbours

hello mdmhvonpa was really sad i had also removed your comment as well when i accidentally removed the post 'lovely neighbours''.

in your comment you said the only way to get your neighbours attention where you live was by being aggressive.

in this city its not usual to have such good relations with your neighbours, people are very insular here.

amsterdam is in fact well known for its rude and aggressive people, Emma Goldman records this famously in her book 'Living my life'.

Sunday, July 22, 2007

Wow! Not bad this going out.




Last night was great going round the block for the first time with the Speedy. Blimey it was almost too exciting, as well as being totally scary.
We only went round the block but it was as eventful as going on safari all those kerbs to be negoiated.


Was pretty glad to get back inside and celebrate my huge journey from the safety of the second floor.

Today we went out about 17.30 only meaning to pop over to the Xtreme (coffeeshop) in the Huidenstraat. The very idea of going what seemed a huge distance had me going quite rigid with fear. All those hump backed bridges and would my left hand be able to use the handbrake?


As it turned out the further away from home we got, the happier I and Richie became. Once I had braved several bridges and we had got to the Xtreme we said lets go further lets go to the
Basjoe.
And we did but I won't go via the bridge by Freddie's bar again the kerbs are dreadfully high a really nasty bump down after quite a high bridge.
Got to the Basjoe feeling quite euphoric, our first time since 6 th of October 2006. Had a lovely reunion with James, hugged and kissed, it was very emotional. So long since we had been there, seems unreal now how long it was. 6th of October I could still hobble abit and could drag myself out of the chair and into the shop.
Later on when it was less busy Leo came out to say hello, he thought the Speedy was great, he loved the colours red and black, as he put it just right for me. Boy how he laughed when he heard I had only just got it on thursday and here it was three days later I was already at the Basjoe

Tonight I sat outside with my Speedy feeling quite the thing I had got all the way to the Basjoe had braved the pain and the traffic and the bridges and all those big kerbs and had a real good Sunday bloody marvellous feel really happy. Can't believe the difference it makes to be able to go outside. Beginning to feel alive again.

Saturday, July 21, 2007

yipeee first trip round the block with the speedy











Me and my lifting machine called wendy











Thought I would post a couple photos of me dangling from the hoist above the toilet.
I get to do this lots just like having an amusement park attraction in your bathroom lovely!












Anyone can comment






discovered thanks to a comment on my dutch blog that my comment settings were on registered users only, have now changed it to anyone.

Friday, July 20, 2007

Lovely neighbours (first posted 17/7/7 deleted accidentally)




We have really lovely neighbours, today Rachida who lives down the landing and whom I had met for the first time on Sunday when I popped up to see Willes, came by to ask if it was ok to put some new plants in our plant pots and generally tidy up the balconey for us. Then she said I could roll out and sit outside when I felt like it.

Really amazing anyway after a wee while I could not contain my curiosity and had to go out to have a look at what they were doing. Found Rachida and Deborah both had cleaned the balconey and were potting up plants to replace all our dead plants.

It looked really lovely, its abit odd someone else doing that for us but its so very nice of them and well meant.

Later went down the landing to have tea with Rachida, Deborah and Willes, it was very pleasant indeed. They are three amazing neighbours, the sort I have been wanting for ages.

The only problem is that only the balconeys themselves and from the lift to the front of the building has a wooden surface everything else including the landings and the steps is open metal grid which is quite dangerous. Shoes get caught, dogs can't use the steps, people with sticks also have problems.

Luckily there is wood outside our door otherwise I would not be able to come and go without the most horrible spasms. That for me is the real problem the fact that rolling over this open metal grid triggers off horrible spasms which causes my back to go totally rigid which can flip me out of the chair. So that means I have to have someone with me who can get me sitting properly in the chair again.

Just rolling down for tea with neighbours caused a huge wave of spasms really glad my darling was with me otherwise it would have been more horrible. Bloody frustrating for me not to be able to go where I want when I want. Even more frustrating now I have met the neighbours.
They all agreed that we have to contact our landlord and ask them to come up with a solution.

Thursday, July 19, 2007

Good old Welzorg



Today my speedy electric handbike arrived I was really excited all week about today and so was Richie. The man from Emcart went to the old address luckily he phoned the office who rang us and not too long after he turned up.


At first it seemed I would not get the attachment fitted as I don't have my own wheelchair yet.
Phoned Ferry who lent me the chair and he said as long as it can be removed he does not mind. Then had to check with Welzorg, Ruud (the extremely friendly engineer from Emcart) said he thought it would be no as it would mean two installations and that costs money.


Five mnutes of pure nerves, all three of us thinking it would be no when the answer was yes go ahead. Yippee I could keep it today and not have to wait for another month till I get my own sport wheelchair.


Good old Welzorg today they made me very happy. Finally something nice, I think I deserve it as I have been waiting for equipment since last August 06.

Monday, July 16, 2007

Getting out and about





The days have gone by quickly since last week tuesday, the day after we went to A's birthday party I spent sitting around here with a happy smile on my face. I intended to go out thursday but by the time we were going out the weather had changed dramatically from summer to thunder and lightning.


Friday a good friend visited so did not get out either but Saturday I did go out to the market with my darling Richie. He was amazed when I suggested we go to the market, turned out cos I did not mention the market he just assumed it would not be a good going out day.


Well it turned into a great going out day, we had fun on the market visited all our favourite stalls and bought great fruit and veg and beautiful flowers, big pink and orange gerbers. Look brilliant on the kitchen windowsill.


On the way home from the market we visited the coffeeshop for us and the petshop for the dogs. As we started back to the flat I got a call from a friend, Anne to say she was waiting by the front door with a bottle of proscecio. Zipped home to see her and soon as we were home another friend, Cecile and another bottle turned up. Wow it was turning into a party. My darling produced bowls of nibbles and we toasted each other happily.


Our neighbour, Willes from the 4 floor came by as well as two other friends Paula and Lin so it turned into a very pleasant saturday evening pleasant company, good wine, great food brilliant evening.


Sunday was equally good we had a gentle start to the day and in the afternoon popped up to visit Willes and Henk on the 4th floor. Loved her red living room really great room. Nice to meet her bloke and we had a pleasant visit, wine for me and mineral water for my darling and then before I knew it one minute we were talking about blonding my hair and the next she had mixed and applied it to my hair and within an hour I was super blonde.


Today started not so nice with a huge thunder storm and torrential rain just when the mobility bus came to take me to the OLVG hospital for the last MRI. It all went ok even though the diazepam had not knocked me out by the time I went in the machine but I did not have a panic attack. Brilliant for me as I am so claustrophobic.


I fully expected to be too zonked this afternoon to go anywhere but surprise surprise off we went and did the shops as we had planned and got home before the next huge deluge. Feel very happy seem to have cracked it. So ok I am in pain and discomfort but I am in pain indoors too, so I might as well go out and get involved with the world.


Feel much better now glad I dared to break the cycle which seemed to be happening when I did not go out for a month. Happy days!





Tuesday, July 10, 2007

Really happy



The day got even better at the dentist where I got a real demonstration of human solidarity when I desperately needed to go to the toilet. Nice to see that people will help and are happy to do so. Real good makes me feel happier also about going out.


A wee blip trying to get home the bus made us wait for an hour then turned up just as we were leaving to get the tram. It's always unreliable and especially after 15.00, real relief to see it. Got home later than expected and ate quickly had to we were going to go to a dear friends Arletta's birthday party.


When we were invited I had wondered whether I could get there would I be up to it. Well I was up to it up two very steep sets of stairs. Bloody scary I took off my glasses and closed my eyes still felt the acute angle of the stairs.


The team who carry people up stairs are brilliant and do everything very well its reassuring. They are a great bunch. Brilliant going there tonight good for me and for us all. Nice to go to a good friends party, Arletta made great food and it was good fun. Nice to get out see people.
Home now after a great evening first one in ages. Extremely happy days. The big O playing softly in the background while I dream of happy tomorrows.

Not a bad day today






Can't be bad despite the shitty weather I am feeling good. Already updated my dutch blog and had a shower it was almost a pleasure.


Got the stadsmobiel (mobility bus) coming in 10 minutes to take us out to the dentist.


Oh well happy days!

Sunday, July 08, 2007

Life is a pain.




My life is full of pain and discomfort now but I must live with it. Finally today after getting more and more upset over this last month at not being able to go outside I have been able to come to terms with my reality of pain and discomfort. Have had to say yes that’s how it is and I have to live with it. Its not going to stop me going outside, I need to get out and smell the air, feel the sun and see people and my darling Richie quickly says spend some money.

Still really shaken up about being thrown backwards over the wheelchair by that sudden spasm which thrust my foot back and my body backwards. Scared the shit out of me especially as there is nothing that you can do to pre-empt spasms happening, can’t be aware of something that happens so unexpectedly and unpredictably. Certainly can’t take any precautionary action not with spasms, certainly not that I know of.

Had a huge howl today and told my darling how desperate and low I felt since I had not been out for a month and we both concluded pain or not I had to go out so we did there and then and it went ok really switched my mood from gloomy and depressed to happy and looking forward to going out again tomorrow to the market for cheese and to buy a birthday present.

Did have to take a 2mg diazepam to reduce the spasms and it seemed to do the trick. The last time I went out a month ago the spasms were so bad we only got about 50 meters from the house so today has been a good day and I an looking forward to a few more this coming week.

Happy days!

Thursday, June 28, 2007

horrible shock yesterday..




Sadly I've not got out as much as I'd hoped as I'm getting a lot a lot of problems with spasms. This means that every little bump, dent, cracks, stone or whatever unevenness it causes spasms and they are quite painful these days. They shot through my body and that's not the worst thing, the worst thing is the tension it causes in my back so one minute I am sitting straight and the next minute I am a lying in my chair and my back is rigid with the only contact point being that one point in my back and one at the back of my legs. This can happen at any time so it makes it rather worrying for me to go out on my own.

At the moment I'm hoping that my feet stay on the footplate of the wheelchair until my home care arrives at two o'clock, the other thing I hope is that while I know that I'm peeing myself right now I hope it all stays in the incontinence pants. As I don't want to change trousers and go through all the palaver of a change of trousers which has to happen on the bed. Someone is coming around about 14.30 to check on the progress of some repair work. Would be nice to be ready properly clothed when they arrive. It's really quite dramatic all the changes I have noticed in this last time, especially since we are here in our new place. I'm hoping that some of it will get better and that the increased spasms and rigidity in my back will decrease as the weather gets less hot and I recover from the move.

I feel really handicapped now, in the first month here I was getting used to carrying on the old rhythm of every two hours being helped on the toilet and after that I could carry on with whatever I was doing. Even managed to get out twice with good women friends, the first time with C was just round the block discovering where the various shops were. That was in the first week we were here, in the second another friend A took me all the way up the Kinkerstraat to the market. On the way we passed the Body shop and she joked with a woman outside that she was obviously doing free makeovers that day. To our surprise she answered yes we are why don't you come in.

So we went in and a very beautiful and charming young woman greeted us and enquired which one was having the makeover, when I said me and added that I hoped she would make me beautiful, she replied that I was already beautiful. She then proceeded to do my face everything was done very delicately, she explained to me that she was going to use the minimum make up, a very light foundation and a little bit of equaliser under my eyes to take the dark shadows away. She put a hint of blusher on my cheeks and a line under my lower eye and a bit of a mascara and that was it I didn't need any more she said.

I had great fun and so did A, the young woman in the shop was really lovely to us and especially to me she flattered me up the whole time we were there. She was a very nice young woman and what I particularly liked was the fact that she made an instant my contact spoke directly to me. The wheelchair did not make her want to talk to my companion instead of me and the other thing was that she asked me why I was sitting in a wheelchair, mostly people are just too scared or just do disinterested to ask.

Yes it was a really good day tafter the makeover we went down the market saw the stallholders we used to buy from and the cheese man bought some of his bargains. And then we tottered off to sit outside a cafe just up the road in the sunshine and enjoyed a nice sandwich and a glass of white wine brilliant! A lovely day the same weekend MD and I went shopping on a Saturday at the market it was excellent. And I since then I've been around the block a few times went to a coffee shop and to the local shops, never alone, always with with MD.

Then about three weeks on Wednesday we went to the staadsdeelraad, local council to apply for a new passport and sadly I had to go back after a week to pick it up so we set off but sadly only just got round the corner I couldn't go any further as it was too painful for me and everything was spasming really dreadfully, constantly lurching in the chair like I was going to be chucked out onto the ground.

Horrible so since then I haven't been anywhere not even round the block anyway must try and resolve this soon as I don't like to be scared of going out. Besides I don't know how long I will be able to do things so I must make the most of this time. And I will.

Have become very aware of how finite time and life is really have to be here and now live in the moment.

At the moment too preoccupied with my own deterioration. Had waited one year stuck on the 2 floor for a new house, caused great stress, bad for my ms. Finally new flat in May sadly since then further rapid deterioration now I can't write with a pen at all and only type with my right index finger. Notice finger getting cramped up like the others.

Have continuous painful spasms in my legs so difficult to go out.My writing for myself, my blog and podcast as well as email research and news on the internet are my major sources of communication. Would be devastated if this were also taken from me. This has all happened in the space of one year and is difficult to deal with. I need to keep a step ahead and be aware of what's happening.

Major disaster yesterday a spasm pushed me out of the chair and I hung upside down for 20 mins till MD could get here to rescue me. We are both shaken up horribly.

Tuesday, June 19, 2007

Friendship, love and support


Millionaire.

What a lovely bunch of friends.
Feel loved and supported.
Really need that now.
Notice its good for us all.
Friendship, love and support.
I am a millionaire

Thursday, May 24, 2007

new chapters



A new chapter

The best new chapter would be if could type with both hands again. Blimey I would give a lot to be able to type like that again. The so-called good old days when typing was no problem, only those good old days are only three weeks ago.

Three weeks ago I had no problem with my hands could type, write and eat with knife and fork or both hands. I could even hold my mediwiet joint between my fingers and not have to clamp my finger and thumb around it to guarantee it does not drop on the floor or even worse between my legs into that uncharted territory which only gets seen every time the hoist lifts me off the wheelchair.

Three weeks ago I could rattle off emails, update my blog in minutes now its sweat and tears to get a couple of sentences written. Its not just the typing its my posture that seems worse too.

Since my left hand does not work anymore I find my posture has got worse too, now I have to hold myself in position with one hand. This makes typing difficult but not impossible certainly not if it means no communication.

Can’t quite believe today finally got the long awaited letter and of course I got a knock back. As Richie says they closed ranks and I got shafted, for me like all applicants for help I get cheap and adequate help not help based on my handicap or needs. So I get the chair the arca advisor recommended, well she didn't the man from sunrise did when he realised he had been given the wrong information.

Shame not many people doing that sort of work give a fig for what they do, certainly the clients are the last people they try to help. Work they survive in a bored haze of pretending to be very busy. Mind you not everyone is like that. Yesterday I met an advisor from arca, a new colleague of the people helping and advising me. It was pleasant to meet someone who actually does their work and well too. Also a very good manner which is essential as its not ok to be treated like you don't matter when in reality its all about us and not them.

We finally moved to a new flat, took 5 months longer than we hoped for and sadly that means I do not get to do so much here as I had hoped. If only we had moved sooner I could have had all the pleasure of getting out and about on my own exploring my new neighbourhood. In the meantime my condition has got worse.

We moved on the 12 of May, two weeks after we signed the contract. MD was brilliant he did everything. Painting and laying the floor with the help of good friends. Then he had to clean and repair the other flat and when it was done he got sick.

Week before last MD got pneumonia, the infection is gone but he still needs to recover. Luckily he did not have to go to hospital. I realised then how fucking helpless I am now I can't help myself at all. Pretty scary hate to think how easy it is to end up uncared for by someone who does not love you in a care home. Scares me shitless.

Means we are still living in a mess, clothes are in plastic bags, books and records in boxes and half the kitchen equipment also in boxes. On top of that I just got a new hoist a passive one in which I get pulled up out of my chair and put on the wc or in and out of bed. Bloody horrible to get dressed it’s a huge struggle for MD. Luckily he has been home so we can get used to this new reality together.

Have to find a solution for the wrestling match and [ai seswsion now that dressing has to take place on the bed.Poor md's back as he struggles to get my trousers on. There must be a an easier way.

The dogs went abit out of control in the first weeks but it was just moving nerves they love it here now. Because of the all the floor to ceiling windows they can see the street in this flat. Brilliant for them less so for everyone else as they got used to the novelty!

Sadly we have not got round to curtains yet but that will be the next thing. Important as it will change the whole feel of the place. The living room/ kitchen is bright yellow walls and green floor so green and yellow tie-dye curtains would be nice. All MD's ideas and so far it looks great.

Ok going to have a medicinal joint, get it on prescription it helps alot. I am totally dependent on others now, can't even go to the toilet alone and as for going out alone forget it as I get spasms some quite intense and I would need help to regain my seat. So could be real scary to attempt any journeys alone even to the shop on the corner.

Legs are painful all the time and now I can only type with one hand, which is a bloody nuisance. I got some voice recognition software, which I need to practise with first. Blimey it really isn’t bullshit that old cliché about how you don’t know how good you have it until its gone its bloody true. Here it is I can only type with one hand now and these days I need an extra hand to help me keep my balance.

Bloody hell the pace of the constant changes has been fast. Shit in hell from upright to totally cripple in a year. Hope a lot of it is down to the weather and not a permanent deterioration. Heat is real shit for me sets off spasms up and down my legs and major spasms right through my body. Too may for me to relax. Going out alone seems unlikely.

Here we are in our new flat its nothing like the old flat. It’s lovely and light here so different from the other flat. It has heaps of windows, in total there are 12 windows, 8 in the living room/kitchen all floor to ceiling. Cost a bloody fortune hanging all those curtains, hope they will look good. Funnily enough I keep getting addresses confused and keep referring to the address we lived at previously, that was 7years ago. I am not surprised at all as the last year has been difficult really stressful

Getting on with it.

Feeling sorry for myself is no longer an option now I have got one of those nasty incurable diseases. It was alright to feel sorry for myself when it was nothing serious, but now when I have every reason to feel really sorry for myself and wounded that this has happened to me its not an option. Can’t afford it cos the result is I get worse. My only option is to get on with it although right now I don’t really have a clue what I should be getting on with. Or how.

One thing I had wanted to get on with was my writing but my hands have stopped functioning as hands, one all the fingers stick together real difficult to put gloves on it’s like a spatula and both splayed open and spasms grip both. Writing with a pen had been very up and down, one day ok the next crap totally unreadable even for me.

Get on with what? Being independent is not one of the things I can get on with that’s gone now. I can get on with getting on and hope its not so bad bullshit sounds like sainthood fuck fuck fuck. Ok I will try to get on with learning to overcome my fears get into the habit of fearlessness.

Mind I don’t need any new habits cos that implies a movement which is repeated over and over again. If you do something over and over again, does that ensure anything except monotony? Is fearlessness a habit? Surely, fearlessness comes only when you can meet the incidents of life and thrash them out, when you can see them and examine them, but not with a jaded mind that is caught in habit.

If you do things habitually, if you live in habits, then you are merely an imitative machine. Habit is repetition, thoughtlessly doing the same thing over and over again, which is a process of building a wall round yourself. If you have built a wall round yourself through some habit, you are not free of fear, and it is the very living within the wall that makes you afraid. When you have the intelligence to look at everything that happens in life, which means examining every problem, every incident, every thought and emotion, every reaction - only then is there freedom from fear.

Happy days!


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