I find that my only reason to leave the house today is to buy chocolate for the Manchester Chav's who will be ringing my door bell tonight to get on my nerves. Trick or treater's! The age of the young beggars will be above 10 years old and I hate the idea that I have to be seasonal to anyone who won't even dress up or have a rhyme for me. If its kids with parents...I don't mind but if it just an excuse for teenagers just to throw eggs at my window it just makes my blood boil. I know I am going to be online tonight chatting to my Vamp friends and it going to be busy with the dark and the doomed so any interruptions better be good! I have my vampire teeth in waiting for tonight and I may just wear them to scare the living hell out of the teenagers who expect the world for free.
Maybe I will just with the lights off and chat with people in the chat room. There is two to choose from:
1) the ms chat room which was bought to my eyes by Shannon. 2) The Vampire chat room which has special guests tonight talking about stones, crystals and herbal remedies. I think there is a couple of artists there too so it will be a great place to pick up some websites for my viewing pleasure. I might even see Bobbeh there...Might!
It was great to see Jen last night. We didn't drink(which was different!) and still ended up happy with the brief visit from my neighbor when she dropped of a new book,Dead Simple by Peter James(I'm sure its not a reflection of the woman...Really) and she returned my book Darkly Dreaming Dexter by Jeff Lindsay and I can't wait to pick it back up. Jen left early this morning with a promise she will be returning this time next week.
It seems that I have a busy day.....Shopping for treats! What a surprize.
Just got my post this morning and my present to my dad just got here..... I am not sure I want to give it to him as it is amazing and I love it! I think I may have to buy one for me! Do I love my dad enough to give it to him, Yeah I do! I think he will love it too! Chrismas is going to be a great day. Now there is just the kids to buy for....Thats what it for at the end of the day.
I got another phone call from the docs asking if they can send round two more uni students so they can so another report on thursday morning,this time they are 2nd year students. Speading the word....again!
Hope you all are well(Meehahahahaha!) Happy haunting Dave
After spending 4 days on my own doing nothing constructive at all I am preparing for the 5th day. Yet again to do nothing! Here is my routine:
Wake up. Turn on TV in my bedroom and watch for 30 minutes. Turn on Xbox and listen to Frank Zappa. Go for a shower. Get dressed. Come into the front room and boil the kettle for coffee. Turn on PC. Drink coffee. Smoke. Turn on music(has been Pink Floyd:Dark side of the moon, for the past 4 days) while reading emails. Finish emails and reply to when needed. Check all blogs for comments. By this time I need to change music(Pink Floyd:Wish you were here) Think about compiling a list of music for my own funeral(Dave the emo!hehe) Think about putting list of music on my blog....I then think its a bad idea because it will upset some people! Get another cup of coffee. Do update on blog. Eat breakfast at about lunch time. Wash dishes and throw out rubbish! When the PC hits Shine on you crazy diamond I wake up. And the list goes on into the day...
I miss Jen and cant wait till her next visit!
When I feel like this I look at other peoples blogs, I was so glad to pop into http://mdmhvonpa.blogspot.com/ and I got the nice swift kick in the cahoonies when I saw this: Dont ever take life too seriouse. Thankyou mdmhvonpa and Charley! Mahnamna!
She is coming back and I have nothing to worry about so roll on the great music:Bodysurfing (cover) By: KTown Heroes ft. Jake Shimabukuro
Hope you are all well Dave
Ok charles I will put a link in for your podcast and leave you some feedback!
October and Halloween looms and maybe that's why it feels like the grave in my flat. Its so cold!!! I can't wait to see Jen on Monday night and get a hug. I know that being cold makes me feel pain more intensely and I will hit the pain killers if it gets any worse.
I got a visit from the girl next door last night. She was armed with a half bottle of vodka which was nearly finished...That was a scary visit! I honestly think alcohol and her should not mix.....Ever! And not in my presence ever again! The brief flights of sanity can be seen but they are few and far between. I think she has been hurt in so many ways but I think she needs professional help rather than someone who has a different view on life. Hardly my problem but I think I am the only person who has listened to her and she is attaching herself to me.(the idea of a limpit mine comes to mind.That and Annie Wilkes from Misery maybe!) I have to be harder when choosing my friends in future I think. Scary at this time of year eh!
My sister is moving out of barracks this weekend to a safer St Annes and I hope everything goes smoothly for her and her husband. I wish I could help but I would only get in the way. It's shit being disabled but I am sure they know I am helping in spirit.
Well I have a few things which I would like to develop further. Like my study and photography and writing but I get this feeling that I am just filling in time before my next flair. I am happy. I have no fear of what's coming but I do hate this waiting. I consider myself lucky like a guy who has just escaped from being hit by a car but knows there is another one coming. Its weird!
I would love to go back to work but there is life out there and that is more scary than staying in-doors. I think staying out of telephone work is going to be the best possible route for me. Don't get me wrong I like meeting new people and find it easy to make new friends but talking to the public and serving the public grinds on my back teeth. If I want any possible restbite from this situation I will have to educate myself in another field. I feel like a prepubescent teenager again trying to make life decisions before he knows what to do. This time tho....I have life experience. I know what I can do. I know what failure feels like and I know I can commit myself to something...Something.
Haven't I been here before? Oh yeah...I have! I was looking for a hobby and someone suggested I get a flat mate!lol! Well I think I have progessed from that point(more ways than one!) and I think I have an idea what to do.
Dave the thinker!!!
Yesterday was short after my journey to the shops. I have been sleepy all day today but I have got that mark off the bathroom floor after 10 minutes scrubbing on my knee's. I find cleaning is a way to clean up my thoughts too. I still need to clean the house up a bit...Maybe thats why my head is up my arse!
Just read my dads blog and he had this on it:The Cult - She Sells Sanctuary Closet goth!lol!
I got up early today. I had trouble getting to sleep last night. Just keeping myself awake thinking about things. Jaime has been on mind for a bit as she was on the radio talking about the CD and raising awareness of ms. I am so proud of her and hope it all went ok. Great way to raise awareness girl and the poster rocks. I don't think I could do it...Well we will see eh!hehe! There was some strange noises in the flat upstairs and I don't think that helped with getting to sleep. When I finally got up in the morning I noticed a police car outside the house and it starting to make me think of moving soon. Its amazing what the weekend has turned me into. Any noise at all has me on edge.
Is everyone ok? Is there going to be any more trouble with screaming chav's? I can't imagine what it did to the older gentleman up stairs if it freaked me out that much. I could look after myself if there was any trouble(more funny than offensive really) as my arms and fists could give you a wack you won't forget, but the old guy must be worried. I will be keeping an eye open for him just to make sure. The only thing I can do at the moment is keep the noise down so I don't disturb anyone. The invisible guy with the invisible disease. Maybe I am thinking about it to much...Just in a wave of paranoia running rampant. I have to remember that this is my house and I should feel safe in 'my house'.
I got out the house this morning and bought some cleaning products so I can attack the house. Its not messy or anything but it could be cleaner. I think I am developing and great phobia of dirt after doing research that concetrates on the smallest parts of my bodies defense. Weird eh! I am going to start tomorrow as going outside into the shopping centre has wiped me out. I know I need some time to think about Christmas presents anyway. Make a list and stick to it as soon as I get the cash.
I got a letter from the government today about housing benefit and I am happy with the way its working out there. The money I am awarded will be put in my bank account and the only thing I have to worry about is the credit card...But to be honest I think I will worry about that till the day I die and that appears to be the norm in modern day society today. At least I have my nest egg to pay it off if I get to worried about it. I saw on the news today about the average for the public dept and I am well underneath that...Still worried tho!
I have noticed the amount of daily viewing I do on the medical news that is on TV. Something that has been on this morning in the UK. The ethical society has given the 'thumbs up' for the first facial transplant and I am amazed with how much the medical field has progressed and what avenues they are taking. There is ground breaking stuff going on all the time and I think I will see a lot in my life time. I am not saying that it shows promise for the ms community(as I don't need a new ugly mug but it shows what they can do!) but just look at what they have done with modern medical science so far. I don't think that a cure is far down the line even though I am going through my own personal hell with this disease.
I keep asking myself if the glass is half full or half empty. To be honest I think I am a 'half full' type of guy and I am optimistic when it comes to the medical field. I strongly believe that I wouldn't be here today without them. For the first time in months I have picked a book up and have got through two chapters without falling asleep and its a fiction book too! Without fail by Lee Child. Its fantastic to loose myself in the book and its refreshing to know that this is 'better' than I used to be. I think the medical field helped me get here and I am thankful..
I still think that I could be better but to be honest I think I didn't appreciate my life before I got the bad news of ms. I do find myself making changes with every aspect of daily life. Like the other day...When it all kicked off with my neighbors and the young lady came round in massive distress. I would have taken advantage her and lavshed in the attention...In the past even with having a partner. But now! There is no way I would cheat on Jen even tho I know she is leaving me later in the year. Maybe I am just feeling the 'getting older' thing but I am appreciating life now, under different rules now but I like it! I don't want to ruin the good things in my life and I love Jen regardless of what else happens. I think having this second chance is ode to the medical field and I think I owe to them to live my life in the best way that I can.
I got my web-cam in the post this morning. Its installed and ready to go. When my dad did the upgrade on my PC I lost the application that controlled my old web-cam and I ruined trying to reinstall it. In fact I took it to peaces in a vain attempt to try and fix it.....Ok I smashed it in anger. But now my new one is here and it looks fantastic. Now the only problem will be my hair and I will have to keep up appearances when talking to folk on the internet
Right the reason I am tired is that Jen was here last night and my physio came this morning and she put me through some paces to correct my balance again as I have been lax with my exercises since I got Claire. My arms are fine, they are the strongest they have ever been but I need to concentrate on my legs again if I want to walk on them for any long distance.(Anything over 15 feet just wipes me out, great indoors but useless out!) We have arranged that I attend the gym within the hospital in a few weeks soon. They have a lock down on all out patience at the moment because of an airborne virus and they are on clean up mode at the moment.(the hospital just won an award of excellence and they are keeping up the standards! I am in no damger there!)
Its not very offtern I am this physically tired but I will get through it. Lots of rest I think for today.
Hope you are all well. Dave
This is for Jen: ***********WONDERFUL WORLD (by James Morrison)********* AWWWW!
I have a few things to do today. I have started my Christmas shopping today as I don't want to be dragging Claire round the packed stores with the usual Christmas marauders. You might think I have started a bit early but I think it best to give some thought to the gifts this year as the funds will not be as affluent. The scale of how much thought and funds will have to be weighed heavlifly on the thought side as I know its going to be tight purse strings come December 25. I also have to keep what I buy from here as my family will find out. All I will say is that I think my dad will be happy with the gift that I have ordered for him this morning. I make it a rule that I buy myself something before I start every year and I have a new webcam also en route!
So with this spending I made sure I give my finances an overhaul and the first port of call had to be the buying of the shares from the bank. Yeah I know....More spending but the long term benefits are going to be better than if I just take the cash. This morning was the closing date for the options, 09:00 to be exact and that was my shakey legged ass had to be up early. I decided to just buy the full amount of shares on offer and do damage control afterwards. My savings will cover the 495 shares and then some. I get the access in my account over the next 10 days or so. I have dreams of it being a massive amount but I know its not going to be that much. I think this is the first sensible move I have made with money.........EVER and I don't want to waste my nest egg.(In the past it has been scrambled or fried within seconds!) The scary thing is I think that means I have finally grown up and my childhood is over..........Errrggg what a horrible thought!
Even though the last couple of days has been traumatic I have had time to think about a variety on things and there is one thing that sticks out like a thorn in my side. I think Bobbeh's view point on euthanasia and the March family is correct.(Damb smelly hippeh!) There I said it! I will have to say sorry to him and to Mr March I think he was very brave just to bring it to the public view and I thank him for it. I know its a strong view point to bring to the table but I would at least like the option should this disease get that bad. Without getting my family into trouble if 'I' decide to end my life. I do believe that the government should be open to the regulate this in the future if they don't find a cure. I do have to say I want to live and want to help others get the best out of there lives and I only hope they will find a cure before my body fails me. It is harsh reality and very scary(not just that Bobbeh was right!Damb hippies!) and I applaud Mrs March and hope she can rest in peace. At least the topic of discusion is now being talked about and maybe the government will look into getting us a cure.....But what do I know this is 'just a diary'!
I have my young lady coming today so I can get a hug and let the troubles of the world leave me for a while. Its amazing to get a hug from the her. The loving embrace from her can cure so much.
It appears my ability to make discussion isn't disabled!
To celebrate yesterdays good day I got myself some beer....It all goes down hill from there really but it ended in a good place. Had a really indepth conversation with Bobbeh about Mr and Mrs March through MSN messenger which was fueled by alcohol on both sides. I did learn something and would like to talk more about it so something did come out of it. We were rudely interrupted by a group of my neighbors who were also fuel by raging alcohol and I had to leave my converse with him.
I got to meet some more of my neighbors(for the first time!) as the discussion outside got a bit ruff. As I cannot stand for long and the topic of disturbing the disabled residence in these flats was approached upon very briefly. The cool couple(who gave me my TV) were involved and I asked them in to divert the attention of the very angry 3rd party to there beds. We chatted for about 30 minutes and relaxed them from the very stressful situation by playing Jazz from my collection and offering them tea and smokes.(very English I know!hehe) I was just starting to think that the situation was resolved when I got a rapid heavy tapping on my window which got louder with every beat. The cool couple were disturbed again and went back to how they were before.
They went back outside and it started again with equal vigor but my name was being mentioned more and more. I herd very loud shouting and some threats of fire and death coming from every party before it all seemed to finish and there was slamming of doors as they all returned to there own homes. I was hoping that would be the end of it but no! The police had been called for the public disturbance and they,quite rightly went to make sure that the female 3rd party(who is single) was not hurt and after they confirmed with my friends up stairs they left and I was not disturbed by them.
10 minutes after they left I got another tapping on the window so I answered as she wouldn't stop. Holding on to walls as I opened the door and got a very short telling off it went a bit like this:
"Are you the guy in the ground floor flat here?" 3rd party "Yes" "Well I am not a lesbian! And you have no right to say that I dress like one" "Ok I am sorry" My legs wobbling like crazy as adrenaline starts to be added to the drink that I had in my system. She continued and started to go off on a tangent about things I didn't understand or have any involment in. Then she stormed off saying something that made me laugh uncontrollably. "You...You....MS'ER"
Becuase I laughed she came back starting again so instead of falling over I said "Oh Come in so I can sit down for this as my legs are killing me!" She looked like a disgruntled child and I had taken her toy. She stopped and thought about it for a second then said "Errr...Yeah.....Err ok!" she was taken aback. Brave or stupid on my side I had to get this finished and make sure the rest of the people in the flats were no longer disturbed by this obliviously upset woman.
So yet again the tea came out and jazz music was placed in the CD player. We talked and calmed her down and she then took a different side to her which I had not seen through tonights activities. I smiled. She couldn't continue with her madness attack.(saying "I am not a lesbian" about 50 times) She then started to open up and relax.
I asked questions about her and listened to the answers with intent and no fear. She relaxed more and was starting to feel like I was a friend. She started to flirt with me so I told her about Jen. I wanted her to relax but not that much. The slight touching of my knee continued but it was more of and accident after that. She felt confortable and saw me as a friend(I hope) then and she had a different look on her face that told me she had to go home and sleep off, in bed, the remaining alcohol and stop trying to get me in one. We had another cup of tea then talked about music,books, religon and family. I do feel I made a friend there. When she went home I think the alcohol maddness had left her so she will sleep well. Its does seem that if I don't do anything lifes maddness finds me instead me looking for it. I hope they are all embarised about last night and the guys in other flats were not disturbed ... But I did get two hugs from each of the girls and a "Awww your so cool" so my work here,I think is done! I have to thank Frank Zappa for having a calming effect on the situation. But my god I have to get some sleep tonight and I really do hope that I don't get this every weekend from now on.
I awoke to the sound of my princesses voice over the telephone. A great start. I Listened to Dark side of the moon by Pink Floyd with a coffee and a ciggerette.Over night my bank account was forced into credit with money from the government from housing benifit. My account has not seen a 4 figure credit since I left work. I checked my post at 14:00 after sleeping for 7 hours, which I haven't done for some time. I went outside to buy beer straight away and it was sunny in Manchester.(that's mission impossible in Manchester!)
I went shopping and had the greatest steak and alee followed by a sausage roll. There was even people smiling! The bus ride was uneventful but pleasant. I have just got back home to a great cold beer and Frank Zappa playing through my computer speakers.
There is a form on my computer desk with a telephone number for my savings plan....And it has been a great day. I haven't had a day like this for a long time but I am loving the peace and no stress...Why does it feel so alien to me? The thing is I have loved today....And its all on my own!
Anonymous said... remember ...this was Gillians life and her final wish. Lets not slander this mans name as he had to sit there and watch and assist his wife die. I think he is a brave man and it is difficult for anyone to judge him until they are actually faced with having to make such a decision
And my reply:
This is the third time I have type this out as blogger is having problems acceptinhg the update from my pc....
I am going to say this once more.
Annon: We face this every day and we are still here. I am a 30 year old man with a disablement that should be for a 90 year old... and I am still here. I belive that I can teach people to understand whats happening to me by righting this blog. I am in pain, my chances of having a family are greatly reduced after having chemo. I am a finacial drain on the government I will be a strain on my family and friends. My study will not cure cancer. I will never fit into the nulcear family equation....Society will look down on me from now on and I will be classed as shit on societies shoe for the rest of my life....So am I facing it??? Your fucking right I am facing it! Everyone who come's here to read my blog has this and we are still here!
Let me pait you a picture of what happens to the human body when you wrap a bag around the head and tie it like Mr March did.
Your face goes blue blood vessels in your skin pop around your eyes and ears bleed. Your body relaxes and vacates your bowl and bladder.(you shit and piss yourself!) Your family will never live there life without thinking about you and how you died. Mr Marsh will have to live with what he has done.
I am sorry for his loss but dont expect me to forget what he has done. Brave NO! How brave do you have to be to kill someone who cant do it herself? I think being a fellow ms'er and one of the afflicted I can say that!
To purchase the CD please click here and you will be redirected to the Albert Adair Designs website who is the Official Sponsor of the “Everybody Falls” Charity CD for MSAA. The cost of the CD is $10 and it is going to a worthy cause...helping each of us touched by MS!
The thing is....How could you ask someone to kill you? Having someone that close to you like a husband or wife,sibling or partener to do that to you? It makes me shudder when I read that her husband got of with it. Shows a great example doesn't it. Mercy killing,euthanasia.....Plain horrific!I am sorry Gillian may you rest now and I hope there is something good comes out of it.....I just hope it doesnt give newly diagnosed a bad view of whats to come. I know there will be people out there who would gladly get rid of me(my ex for one!) but I hope there are more people out there who will look for a cure with more urgency.
Its not the only way out. She would have done better to speak to people and spread awarness of this disease...Tell somone today if you are even thinking about it.....Your not in pain by yourself... Talk to me if you have no one else. I would hate to be your last resort but I will listen and not judge. There are groups through the ms society who are trained to be there for you too. Don't let them discover a cure 1 week after you leave.....Please speak to somone... Ms Help line UK
MSRC 24 hour helpline UK 0800 783 0518
Relate Relate offers advice, relationship Counselling, sex therapy, workshops, mediation, consultations and support face-to-face, by phone and through their website. Relate Central Office Herbert Gray College Little Church Street RUGBY Warwickshire CV21 3AP 0845 130 4010 firstname.lastname@example.org http://www.relate.org.uk
DIAL UK network of disability information and advice services run by people with direct experience of disability. (01302) 310 123 Samaritans 08457 909090
I found my fingerless gloves!!!! Yey! They were down the back of the couch.Its amazing what you can find down there. I am no talking the entance to Narnia or anything just things that you loose can usually be there! Now I have gloves I can go out of the house again.
I got a phone call last night from that guy from the national statics centre... He has taken me off the list and is offing it up to other people in the set of flats I live in. I know I would have given a disabled view point but because its a flat area you have to understand that it was only 10 pound. I won't miss it!
Back to the normal days now of cleaning and listening to music. This weekend is going to be quiet but I am going to use it to the best of my ability. Cleaning!
Please do go in to my dads blog as he has great tunes on there at the moment with Micheal Breaker and Pat Metheny for lal you Jazz lovers out there.
Is always needed when you have this disease. Yes you get some resibite but its never more than a few days and always seems to 'burn brighter' when followed up with a good dose of PMA! If your a positive person and you are happy...It gives you a boost. Its the recovery that seems to last a bit longer.
I am not die'ing or anything yet so don't worry. Its just something that is the norm. A couple of days of this and I will be back to my annoying self soon. Its excepting this which is so hard for my fellow ms'ers with a lust for life that causes the depression that runs rampant through the normal life we have. The thing is...I don't think I am any different. I do think that being infected with another 'thing' is helping understand ms a bit better. The other 'thing' can be seen as another disease but I am glad to be infected with this one. 'It' causes neurons to bounce through my mind. Raised levels of hormones causing a warm feeling throughout my useless body. Its one we are all capacity for..Its love of each other that will get through this.
Yeah yeah I know....Raise a glass to the hippy one day eh!
Got a visitor this morning from the national statistics group. He reported that my postcode and house number has been selected at random by the national government computer of statistics...Looks like I just have ALL the luck!
So what does this mean.....Well, I have the opportunity to fill in forms thats for sure. Apparently I can get some money out of it too. And get this...They want me to keep a diary!!! Oh how do you do that eh!(5 blogs should give me some credit here!) The statistics they collect go towards government readings on national results. He comes round with a laptop and a form. He asks some questions. I give the answers and they pay me 10 pound(whoopy!). They also ask me to keep a record of my spending, what I buy for food and general goods and what I eat, drink and spend on bills etc. I told him I am available to take part and he will return later in the month. I hope I can do my part and make a difference somehow....Failing that its someone to chat too.hehe.
Well now I am going to be working for my benifits I feel more relaxed with claiming. See you don't get anything free these days! Hmmm. Maybe they are just checking up on me eh! Maybe they can't understand how I am still alive and sain(ish) but I am happy to tell them how hard it is to claim anything from the govenment and what help I need from them. I found something to relate to him within 3 minutes of talking with him. Believe it or not it was ms AGAIN! His cousin also has this disease and as soon as he found out he wanted to know how I am dealing with it and what meds I am on. You should have seen his face when I said I was on nothing at all.
What a way to start the day eh! I have work to do now....
Sorry had to do it. I have spent a few days with the woman I love. It needs a love song for the theme song....And this is ours! The cure holds alot of good memories after Jen sent it to me via youtube. Ok I might get hit by the US FSS(By the way this will only get done if Charles reports me!) but I want to shout from the roof tops and I feel the Cure is the best way to do it. I have to admit I have been freaking out over the fact that Jen and myself will be breaking up in 3 months but she has calmed me down and reminded me why I love her. I am sorry baby and we will have the best time ever for how ever long we have together......We are just lucky that we know how long it will last, there are many out there who have no idea when or if they can stick together. In a perfect world we would be together for ever.....Sod that...If its a perfect world we are taking about....I would ask for a cure too(meeting at an earlier age maybe but I think you would have gone off me pretty quick when I was younger!)!!!!
Anyway I have to be thankfull THAT I AM HERE NOW!
I have to say a special thanks to my dad for sending me loads of music videos from youtube. Micheal Breaker is a god send with a blessed horn(my favorite is Madame Toulouse, I love the blues piano rift in it)! Go and listen to him. He is great.
I have to rest up now as Jen has got me out of the house and all this fresh air has made me really tired.....Whats the story with that?
Managed to get to the store to buy beer so just going to take it easy for now. I think I might do some more study later in the week.....Oh you know how to get to it eh? Check out 'my profile' in the top right of this page, that link will take you to the front page and then you can see from there!
She be beautiful.....My TV is pretty cool too! I maybe away for some time with this baby. Stereo sound too. First DVD I played had to be the Dresden Dolls in concert.
Jen is here for the weekend(She is in the kitchen at the moment making great smells!) and I do think we are going to be entertained. The thing is I think the TV is going to make all my DVD's seem like new. 24 is going to be fantastic in November.
I also got some post this morning from work about my share scheme. It matures soon and they want to know what I want to do with 498 shares in the bank!!!!
So I guess thats another 3 good luck things(What with Jen here for the weekend too!) that have happend. There must be a relapse coming soon or something!
Maybe its a karma thing.....I have started giving money to Oxfam(2 pound every month) and I have tickets that I am selling via my family for mobility aids for disabled kids never mind the money for ms(there is another one but I can't remember what it is!). I didn't ask for good things to happen they just do but I still feel like I could help more people with the money I get from the shares thing....Hmmm more charity....I wounder whats coming next(Watch this space and no suggestions please!lol).
I awoke at noon today and I have a cold! Sneezing fest! I have the darkened woman coming in a few hours....Well later anyway. It gives me a few moments to clean my act up a bit and get something on here. I had a moment last night going through my research and where to take it for the next step. I find looking into the body and realizing my own existence a bit of a shock. I am not saying I have found god or anything. I just find that we are a fantastic marvel that we are here in the first place. Its amazing to see the workings of the body then realize its all happening in my body too! I think I have found a new hobby that might turn into something good for me. You might read it and percieve it to be a coxcombical rant within the medical field but I will be happy to leave it as an epitaph to my blogging endevors.
If your going to give something a 'go' give it your best.
Found: 1)Pair of lacerated hands/fingers, non removable from male hippy with a massive....Sence of well being. Free to good home. Will require lots of maintanance to achieve god like status in any avenue but very talented and will perform tricks for beer.
Did the shop run this morning without any problems(apart from bleeding knuckles!).Been to the doc's using Claire for the first time. That was fun! And to think....I was worried about it 4 months ago. Feel the fear and do it anyway eh!
I think this is the only way to do the whole disablement thing for me. No more worry just do it! With a fist full of steel!
My mum recieved a letter from the housing place in St Annes today and they have raised my award preference to silver. It just means that my urgency is being recognised and I will get a higher priority than a bronze award. Still looking at 3-4 months. So I will get christmas in Manchester. I have arranged with Jen to have this weekend here. I won't be out of here for 3 weeks as my parents are very busy. So after this weekend I have two weeks to myself. No plans and I feel fine about it. Strange but I am fine. I am sure I can get some hardcore TV watching done....I might even pick up a book if I can get rid of the shakes...I just need to change the music! To much Rage Against the Machine I think!
A day of doing nothing......Well saving the world and nothing!
Jen left at 09:15 (in the rain and thunder and lightening!)this morning and I will see her this weekend so everything will be fine. I still have mixed feelings about it but I will be happy to spend two days with her. It does mean that I will have to be here in Manchester for a month now tho. This weekend is the only time that I can get a lift to St Annes for three weeks as my parents will be helping my sister move back to St Annes and they have some things to do which would stop me being able to ask them for a lift. Yes my entire family will be in the same area within 3 months or so and I can't wait for the first curry night/beer night as that will be the party of the year not to be missed. So the next 3 weeks will be me.....On my own unless people come to me!
At least I have the internet to keep me interested with my research, I have 2 seasons of Startrek Voyager(4+5, the 7 of 9 episodes!yey!) and I have the widescreen coming in time for the new season of 24 in November so.....I am happy to spend time indoors just being me! (playing Xbox too!Thats the saving the world bit!)
Have you every seen a disabled man dance before? I got a really late night last night. I was only playing Xbox and got carried away with it. I wasn't in pain and it was great to get some enjoyment out of not being able to sleep. This morning has gone like this:
9:00 Got woke up by a call from my physio saying she can't make it this morning as she is sick!
9:30 Went back to bed
10:00 Turned over and turned my mobile off as reminders kept waking me.
12:00 received a knocking on my door by a very persistent person, I got up, pulled on my pants and went to the window to check who it was. It turned out to be the well fair officer who came about the council tax benefit form. He had some really good news for me with regard to the form being passed and my rent getting paid from now on!!!! I asked about back dating it to April, he said they are happy to do it from May. I shook his hand and smiled. He then told me about how much that would be. I nearly cried and shook his hand again(I didn't cry because I am a man!!!), I thanked him for all his help. He then tells me that I should apply for Incapacity benefit as it works out that I am being paid by an insurance policy(long story there!) and ms falls under a level of disability with having a wheelchair. I am never going to be a millionaire or anything but I will have more than 40 pound a week to live on.(that's what I have been scraping by on.) The money I will be getting will be a great relief to my bank account and will help with a few bills that have been mounting up.
Paying my rent will have to be the first port of call....Oh that's all of it gone! I was going to say 'Easy come Easy go!' but it wasn't easy come and its taken me 6 months to get it! I am so happy that its done now. Its one mission that I wanted to have completed before I return to St Annes. Its done!!!!Yea! If I do incapacity benefit before I get back there that will relieve so much stress from everyone in the family.(finacial/emotional should it be needed) It feels like I am packing EVERYTHING up before I go to coffin dodger city and it has given me a sense that its going to be ok. You have to celebrate these things don't you? Jen is coming tonight so may just do that. Might just go back to bed first tho!hehe.
And I don't mean a 'dirty stop out' type way either. The past weekend I have been at my parents and sleeping in a different bed. I love going to see them and is a great benefit to my mental state state as well as my diet but I do miss my own bed when I don't have it. I think I have used this time to have a good think about a couple of things in my life and what I want to do for the next step. I am now looking forward to moving back up there.
Yes it will suck to leave Manchester and any possibility of getting closer to the woman I love. Just to be there for her in what ever she wants to do would mean so much to me. But to use a well adopted saying in my life now 'Ce la Vie'(you have to really dislike the French for that one!). There is nothing I can do about it and I have so much going on in my life to worry the things that I can't change.............Such is life eh! Just another thing!
I am looking forward to what else 'life' can throw at me. With this new view point on life I can look at other things on how to change to make my life better. To enjoy every aspect of disablement.......I know! Weird eh!
Last night after I got dropped off back here with my parents and my sister I got a visit from my neighbor and his girl friend to say that the wide screen TV will be delivered in two weeks. Oh I am getting one if you don't know already. His mum is moving house and needs the cash/space and its only costing me 40 pounds. Its too big to transport and the money will help her out. I did suggest other methods of getting instant cash like eBay etc but the guy says he would rather give it to me and I was completely blown away by the generosity. Maybe good luck is throwing me a bone here and I shouldn't look a gift horse in the mouth but I will have to check with him on the legal aspect to this transaction. I know he reads this now so maybe he will be prepared for it. I have helped him with his PC (software,music,hardware)and maybe this is payback eh! Karma works in strange ways! They are a fantastic couple and really great people to know. They are great friends who worry about me and make sure I am ok every day by asking if I need anything from the shops and getting my post when I am not here. I will miss them when my new house is all arranged and I have to leave.(Just another reason why I want to stay!)
But life goes on! I want to catch up with everyone and I have research to do too so I will be around soon. I have missed speaking to Jaime through msn messenger and I worry about her every second of the day if she is not in contact(love ya babe!). Time to get some routine back now my mind is in the right frame.
He is watching. My dad now knows how to put music video's on his blog too! Music is from Jethro Tull today. Music from my childhood. Thanks for making me a hippy mum and dad! I have placed a photo on my picture blog today so take a look.
Research is giving me something to do and I love the buzz!
I am not exactly breaking records or making research better by any means but understanding why the doctors are looking into certain area's is making me more interested. Its the "Oh that's why!" factor that is getting me more involed in the whole ms pathway. Its good to educate yourself with what's happening to your body and makes me think that certain practices that I do are going to change. I am not talking changes in music tastes or anything. I just think that diet and smoking will change soon and quickly. Understanding how small we are with the universe is making the idea of looking at cells in the body very easy to do.
Using the imagination is very tiring tho for someone who is as dumb as me. Its good to use the brain in every possible way and not just thinking about the day to day running and being all depressed because I cant tie my shoe laces. There is more pressing things on my mind at the moment and I dont think I can handle this guy coming round to 'fill in a form' for me. I really don't have time for it. Its going to be good to get it out of the way and will be a great release of stress if they start paying me money with it. I am going up to my parents this weekend but I want to get back soon so I can get on with my/our research. I havent had anyone add a note to my other blog yet but I am doing it for me so I understand those emails from google about ms research a bit better. I hope to help others with there understanding also.
I hope you are all well Dave
*****Update: Just had the well fair officer round(he was well fair!), What a decent bloke! Filled in form for me. I gave him a coffee. He crashed the ciggies and he left after telling me he had told incapcity benifit to send me an application form....so it could be a case that I will get more money than I thought(fingers crossed!), I just hope that I will get something without asking for more information! Tool : Jambi
I refer to as the 'ms for dummies' but think its more like the neuological map for ms suffers. Its very hard to produce medical research in a laymans term but I hope it can do some good for some people who want to understand a bit more about what is going on. I have started with T-cells as I believe after reading two research documents today that people need to think about the basics first before you look in to finding a cure. Its written in the most basic way I can do it...Like you don't know already whats happening to your body so please don't feel insulted if you think I am talking down to the reader.....
I didn't know until, I read up on some things. I just want to help in some way if I can! Please feel free to have a read and comment.
'What is ms to me' is my investagtion in to learning about the body first before I look to find a cure. Its a project that is taking a lot of typing and tires me really quickly but I hope it well help your understanding. Most of the people who read my blog will understand straight away and will only read the bits that they don't know yet. I think taking the small bits first will help me understand a bit better. To be honest.....I need to start learning as much as I can. I don't have a job so I am making one which might help someone.
I am tired! My walking is getting worse. Even getting around the house is a pain.(in the arse!) I have found that I need to hold on to something at every step. Yes it would easier to walk with my stick but I refuse to get it in my own home. Ms stays out side here. I can't even blame it on the heat anymore. Its cold today and my feet are cold. It feels like I am carrying around two dead bits of my body attached to end of my legs. Oh well tomorrow is another day eh!
Maybe excersising will help....
Having fun with Jen! She told me today that she may have to cancle a weekend with me as a friend might be able to get her New York for free...He is a bit depressed and needs his Faghag so he can sort his head out. She needs a passport but you go girl! I will be FINE!
Got a government offical coming tomorrow morning then my brother inlaw will be picking me up to go to my mums at the weekend. I will be taking my camera as I want a picture of the sea to go on my other blog(the photo blog not medical research blog!). Busy Dave eh! I think I need a more confortable chair!lol
Jen visit has been great fun. Its about time that I laughed out loud. I love that girl so much its sickening. I won't be able to see her until next week so I get some recovery time!hehe! I have so many things to do this week I am going to rest up and get them done by the weekend. Got a phone call from the government and they are going to send someone over to fill in some forms for me(Friday afternoon) I have a medical form to fill in so I can get a house near my family in St Annes. They have put me in the bronze award section so that means I am not a high priority yet. It will give me about three months to get everything sorted here. The prospect is quite alarming but it will be for my best interests really. To have a date on it is horrible but its about time I packed up really. I cant wait to see the next steps in my families progression. New family members will be here in the start of next year and that will be my focus from now on. Family and curry nights with a mild alcohol addiction awaits.
Jen told me about her disabled awareness forms she has at her work and I nearly died. It has a list of names that they must not say when referring to members of the public with disabilities.(like anyone would dare!) There is a couple that I feel I would like to adopt so they loose the damaging undertones. I am a strong believer in attack is the best deffence when people try to insult or cause any harm. So making fun of a word can sometimes break down the intended insult so its not going cause offence. If you can feel no insult then the attended attack is deflected and is rendered useless for future use! There is a local saying that I took note of and I have no idea what it means....It just shows how stupid it is and I feel no insult already.....Monguloid! I don't even know if thats how you spell it. Infantile and pathetic but I have heard it used.
I have had an idea to use it when someone asks me what ms means...Monguloid Sex-pest will be my answer from now on! It was great to hear Jen say it for the first time I nearly died laughing. Its now my pet name. I have renamed my myspace with it and I dont feel offended at all. There is no dictionary deffinition of this slang term I don't think anyone will be offended by something that DOESN'T exist!
Have you used it before? Do you know that if you said it and it doesnt mean anything!
Hangovers are great arn't they!hehe! Hope you are well! Dave
Its always nice to wake up to a joke isn't it! Well my sister-in-laws joke this morning was only one of two. My memory isn't at its peak performance since diagnosis but I think that's because I have more things to think about in the daily running of my life now. I have found ways to set reminders like notes on the fridge, getting my email account with a daily note reminder. My most recent way to rember things from week to week is to put notes on my mobile phone. There is an option for 'To Do list" which I use regularly so I can put music on here or bits of info which I need to write on my blog.
The phone alerts me with a tone on the day that I need to take action or when I have set a time for an appointment. I received a reminder to tell me Jen is coming(Just so I can smarten myself up abit!) and remembered to look in the "To Do List".
The first section read like this: American gums, Girl friend epiphany and family savior.
I don't know what that was for at all! I have forgotten!
The second: "If Adam was the first man...Did he have a belly button?"
I think this was to remind me to do another blog and change the saying at the begining...but I am not sure.....I cant remember!(I have opened a new blog to show my photo work today! davessnaps.blogspot.com)
Third: "Mum threat "I will get you a gay care'er" "
Now I rember this! I had said to my mum that she will be wiping my ass again if I need care in St Annes. This was in jest. She came back with the above quote and thought is was rather worring and I needed to get it down here to point out again why I dont want to give control away to my family. They will be the death of me.....And I still love them. Scary "Mo Fo's".
Ive been contemplating this for a while now ...and i think its time I told everyone the truth......
Im sure this will come as a shock to a lot of you but its a new way of life for me now
Love you all
****************************************************** You lend your password to your brother to update your blog and he does this!!!! I am not and never have been gay! Hope this made you laugh you big hairless gimp! I was expecting you to make the screen pink or something! You bastard! Thanks for getting my blog roll in alphabebetical order......bitch! I am never going to lend you my password for anything ever again! Remind me to crap on your floor in your frount room. These people or going to be looking after me when I go to live in St Annes.....Now do you know why I dont want to go!!!! Please note the new additions to the blog roll...My dad and PocketPunk(sister in law the foul mouth slapper)
Sorry not been keeping you updated...Crap diary!hehe
Yeah that's right, or in my case two days, My mum and dad came and picked me up as my last update worried my dad...Thanks Dude! I was having a hard time not seeing anyone and the prospect of another weekend on my own was......Not the best. But now I have two days to report to catch everyone up......Well I will keep it short as I can! I have seen my older brothers family,I haven't seen them for weeks and have missed them greatly. My brother and his wife bought me some sweets from the US and I now feel sorry for the kids over there! Thats not how you treat kids....Thats child abuse in my eyes. I thank my brother and his wife for the experence and recieve them with open arms but...My god you guys have BAD sweets in the states. Maybe its the fact that I am 30 now and have lost my sweet tooth......No Balls you have bad sweets! So bad!(bye bye US readers!lol)We might have bad teeth in the UK(as a whole!) but I am not surprized....We have great chocolate and sweets!
Anyway! Spent the last two days just relaxing and socializing with family. I now can't wait to get up there. It will be great to have access to them again. I am missing Jen loads and want to share the loving feeling that I have. I have new batteries for my camera and think I have a new lease on life again. I took this pic in the garden as the sun was going down: I am happy again. I had some time to refect on my research and think I know how to produce it in the future. Oh and my brother bought 'My name is Earl' series 1 and I have something to watch over the next few weeks. I think its fantastic. I am back and ready to give it my best shot! Hope you all are well Dave
Name: personallog! Home: St. Annes, Lancashire, United Kingdom About Me:
I am 6ft 3" skinny and not well. I was diagnosed with ms in 2004 and I would like to speak with others who have ms. I have a want to raise money for ms charities. We have to find a cure for this hell!!!!
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