Long Time...No See!

Well....its been a while hasn't it!! I haven't written for a number of reasons - primarily because I just haven't had much energy to do so. I have spent more time actually fighting the issues as opposed to writing about them., sometimes a genuine fight is worth putting your efforts into - which seems to be a daily motif for my life! But here I am...

Ok - brief summary of last two months..

My Condition.
No real change - in fact I have been worse. I had a major accident at home which seems to be pushing me back instead of helping me.

Hospital Visits
There have been a few - again been in and out

Housing
Having massive 'off the scale' fight with my local council in regards to my housing. This is quite major as at the moment, my home is more of a prison than a home!! I am finding it harder and harder to get around my home and I am not getting much help from the council!! :(

I have a raised toilet seat, a bed bar to help me get up and new sticks. These minimal adjustments help but the overall housing issue is still there. I am frightened to go into the kitchen on a daily basis.

Medications
My meds have increased more sleepy moments. Therefore less time to spend in life

Suing
Not a lot of info there - but then again, there is a surprise. My solicitor seems to not do much and want to be paid for the privilege!!

Oh - I have a new baby :) makes the rest of my life pale into significance!! I have 2 children and they make my life worth living

:)

"...the drugs dont work, they just make you worse..."

Ok - for those of a squeamish nature, turn away now - I am about to reveal various "medical issues" which might shock / offend. If you feel like this do not read ahead, you have been warned!

Now the warning has been made, lets talk about my body whilst on drugs and my current medical problems....

Over the past fortnight I have been in need of "further" medical attention i.e. what I am taking isn't enough on that day to deal with the pain. The first time round I was rushed into hospital given a very large dose of morphine and pethidine via injection and something else to make me not be sick from the large dose of morphine. The second time was yesterday when I lost the ability to actually get up out of bed. The doctor who came round gave me a large dose of Pethidine (100ml) via injection which finished me off. It enabled me to just about get to the toilet.

I am not going into detail what these drugs do or how they work (I am not too sure myself) but take a look on google at the following pages below. In my eyes (i.e. how they make me feel and pain relief aspects) morphine is slow to take effect and lasts for a while and pethidine take effect quickly and doesn't last for long. Pethidine is given in cases where pain relief is needed ASAP! In my case it was given because I don't have a lot of control over my "bodily functions" and I needed to get to the loo but just couldn't.
Pethidine = http://en.wikipedia.org/wiki/Meperidine
Morphine = http://en.wikipedia.org/wiki/Morphine

After each "emergency" issue, I have had my morphine dose increased. The first time I went from 30mg MST to 45mg MST. The second I went from 45mg MST to 60mg MST. So in the space of a fortnight I have doubled my morphine dose! I would like to say this though to people who think morphine is cool. Morphine is a dangerous substance - highly addictive and very potent. In regular medicine, it is the last drug to be given in the case of pain relief. Its because of its actions and its addictiveness that Morphine is a Class A substance in the UK. I would urge everyone to not use it unless they really really really have to. In my case, its helping me somewhat just get on with things. I wont deny that it gives me a buzz - but this buzz doesn't last long and what I really crave for is the pain relief. MST is a "slow release" version of morphine i.e. it takes ages to get into your system and stays there for 12hrs!

My back, at the moment, is getting worse - and I have to face the reality of what this means. At the time of writing this, I am just waiting to see if me loosing my bodily functions yesterday is going to happen again. The difference is that if it doesn't - then that's "ok" (whatever OK means!) and if it does, then I am going to be rushed into hospital under doctors instruction - which is bad! I am praying lots that it doesn't happen again suffice to say!!

Anyways, why am I telling this in my blog? Simple answer really - I feel I need to share with people whats REALLY going on in my life - it helps my state of mind. If you have read this far, I thank you!

Rain Rain go away...

Well, after a nice week away, and 4 weeks at home due to a lack of wheelchair (see previous posts) - this week promissed to be different. Better state of mind, fixed wheelchair, programming coming on - then wham, something got in the way of all of that - the weather. Before all of this I could go out when I want and I have never really been one to miss something due to the weather, I would go out in all weathers. But now - I have to keep a close eye on the weather just in case there is any foresight of rain as I really shouldn't take my wheelchair out in wet weather. In a little spitt here and there its not so bad as long as I cover the control with a bag, but other than that - I have to stay in doors.

So - as if my life wasnt more complicated enough being reliant on a machine which I have been without for a month, but now I have come to the realisation that I am dependant on the rain.

G-d really is The Judge and bringer of all things.

Gosh - if its this bad now, just think what its going to be like in the winter!!!!

to walk or ride

in Judaism there is a lot of emphasis on walking. The Jews walked in the desert, the 3 "Foot Festivals", having to walk to shul etc....

The problem is, that during the week, I am just reliant on a wheelchair, but on Shabbat I am reliant on a wheelchair and a non-Jew to turn up and push me to shul - a double whammy. If the chair is screwed, I cant go. If the guy who is supposed to come and pick me up doesn't turn up - I am also screwed. As someone who regularly went to Shul before the accident, both on weekdays and on Shabbat, I can only get to shul during the week with a lift from someone else and I can only get to shul on Shabbat thanks to someone else.

I remember the good old days when I could choose to walk when I wanted, leave when I wanted and go where I wanted. Now everywhere I go has to be planned like a military exercise. As much as I am a fee person in this world, I am still trapped and tied to a machine for my freedom. It saddens me so much :(

Finally something vaguely positive!!

A man is coming on Monday to fix my "ride". I dont think its going to be "pimped up" but it will be working and will have a general tune up!! :) I am going to be mobile once more!! YAY YAY YAY

Excuse me!!! Beep Beep

I have noticed that people innately don't take into consideration disabled people! I have noticed the following:

1) When I say "excuse me" - people look around but they DON'T LOOK DOWN!! People don't think that there might be someone on a different level to them. So when I shout louder and they finally realise I'm there, they get offended. I don't think I'm wrong here!!

2) The amount of shops that are inaccessible to me are phenomenal. Shop owners get upset when I ask them to come to the front of the store to the door to take money and my order.

3) I RELY on shallow curbs to get around and cross roads. People park across these with total disregard for anyone else.

4) Bus drivers are evil incarnations from hell - they always treat me like I'm some form of liability for them. Most of them rush off without me in the "disabled parking space" on a bus and when I want to get on a bus but there are buggies in spot I need to get in on the bus - they don't let me on. It clearly states by London Transport (LT) that " if there are buggies in this spot and a disabled person who needs this spot - they take priority over the buggies". Oh - and don't get me started on the ramps that barely wrong!

5) People who park on corners of roads need to have their license taken away and have their car squashed into a cube!! I waited in my chair at the corner of a road a number of weeks ago on a busy Friday afternoon near a parade of shops - I waited there out of principle. The woman (its usually a woman) who came to claim her car couldn't even look me in the eye when she said "I'm sorry, I have just realised what I have done".

Generally - I try to have simple faith in people but everything I have gone through in the past 8 months is testing that faith in humanity!!!

The Evil Chair....

Today was Ok-ish. There was good and bad points. Went to a Bris (Good). House had large, thick steps to get into it so it took me ages to get into the house (Bad). There was a "sudahs mitzvah" afterwards (Good) but the seats were those hard fold up ones (VERY VERY VERY BAD).

Its funny when your whole day is defined by the pain you suffer sitting in a stupid folding orange seat. There were other seats around, but they were either way too low or being taken up by prominent members of the community. I felt it might have been disrespectful to ask any of these people to move from their seats. Also, I didn't want it to be remembered as the guy who asked prominent members of the community to give up their seats - so I sat and suffered and boy did I do that. I was only sat down for 30 mins, but that was enough pain to wear me out - I couldn't wait to get out of there. I also didn't get much choice in that - as I had to leave when my lift left.

Made a few phone calls (1 to LT to find out where my cheque was AS IT HADN'T EVEN BEEN SENT YET!!!!!!!!) then was so stressed from the phone calls and so much in pain from the bris this morning that my head hurt so much that I couldn't focus straight - so I went to bed till and basically woke up for dinner.

Felt a bit better after sleep - but normally when I sleep nowadays its not just a "sleep" - its more like a semi conscious coma. Its strange that I am aware of the people around me and sometimes the things they say to me when they believe I am asleep but I just can't wake up to respond - my body wont move when I want it to. The drugs do strange things to me...

Tried to focus on work and failed miserably - there wasn't much day left after the sleep :(

On a diverging note I had a moment today when I missed the days when I could go out, hop on a tube, hope on a bus - actually walk out of somewhere when I wanted to. I am not saying that I wanted to walk out of the bris - not at all as it was, despite the pain I was going through, an important event I simply had to be at. The point I am making is that I had no choice when I left. Evey time I go out the house it takes immense planning, preparation and research. If, for example I had phoned ahead to check out the seats, I think I would have taken my own seat to save me the suffering I went through!!

And yet I keep telling myself - how can I let a stupid fold up chair define my day?? It really does sound silly!! OK - so my day in summary - sat on horrible chair and the rest of my day was downhill from there!