Good and bad people

Hey everyone,

This week I've had good and bad experience on the way people treat disabled people. My first experience is bad.

The bad experience I had was being refused and prosecuted by a bus driver. I tried to get on a bus with my husband and my baby in a buggy, the bus driver said there was no room on the bus even though there was no buggy's or wheelchairs in the buggy park. When I said to him there was no-one there he mumble something that I couldn't hear so I said "sorry I didn't hear you" he said
"you can hear me your just no listening to me" now bear in mind that I am half deaf and have suffered with hearing problems all my life but have learnt to deal with it. So when he said that I said "I am listening I just can't hear you" to that he replied
"you can hear me or just not listening" so by this time I had lost my temper and said "I want you number" he said
"what do you want my number for?"
"to complain about you!"
"why do you want to complain about me?"
"for being rude"
"I'm not being rude your just not listening to me" at that point a women who was present said to him "you are actually being rude" I said "i am listening I just couldn't hear you" he said "no your not your not listening"
"I want your number!" so to that he wrote down a number on a bus receipt and I got of the bus (as I had a foot in the door so he couldn't go) and got on the bus after. While I was on the bus I spoke to the bus driver and asked him if the number if he wrote down would be his number and he said that he had written down the speed dial number instead. Apparently a lot of bus drivers do it so that they can't be complained about and when the person asking for it asks for proof they say its written down on the screen and people believe them. Please be aware that, that's what bus drivers do and I would suggest waiting there and asking the police to attend so that you have a reference number and a back up statement. As you can see not everyone is willing to help disabled people especially public transport not all but most. If you know me and life in my area be aware of this driver! he is white, between 50-60 years old and has facial hair white colored ginger hairs. My sister who has a son with cerebral palsy has had trouble with this bus driver refusing her on the bus too. I'm thinking of setting up a campaign to have him sacked as he is prejudiced against disabled people and hope that I receive all your support.

On the plus side this week I was treated with great respect and dignity in New Look. I was there buying clothes and needed to try a few items on but needed mike assistants the problem being the obvious that his a male and their not allowed in the female changing rooms. I asked the lady attending the changing room if there was any chance of him helping me and she said that she didn't know and asked her manager if it was possible who was more then happy to help. They have a special designed changing room which is bigger then normal and has a seat. They were more then happy to help us and I was so impressed with the treatment I received. It just goes to show you that there is some good out there that even though some people don't treat disabled people with the respect and dignity they deserve there are people who do and thank you to those people.

Thank you for reading xxx

A result finally!

Hey everyone,

I just wanted to say that after so long we have had a break through! We have finally been awarded DLA! It has been a massive weight of my shoulders I can-not begin to describe to you the relief we feel as a family.

All we have to do now is wait for all our over thing to materialize and we will finally be in the position we want to be!

Thank you for reading xxx

You can't get anywhere without a thank you! (well you probably could in this day in age)

Hello everybody,

I just wanted to take the time to thank the people in my life that help in any little way they can. Fist I want to thank the Facebook pages National Multiple Sclerosis, Multiple Sclerosis Trust and Parenting with MS (Multiple Sclerosis) who have connected me with so many different people who were so understanding and helped me feel like I wasn't alone in what I was going through (even if it turns out not to be MS) some of those people I still have contact with and continue to help me.

Secondly I want to thank my friends who have helped me in all kinds of ways. I have a lot of people who constantly ask me how i am to many to name! Jessica Drewett is someone I have met through Multiple Sclerosis Trust and have she helps me through understanding what I'm going through. My friends Sarah West,Diane West Annie Hall, Emma Kyle's mum (sorry don't know your last name! bad I know!) Mayrose Davenport treat me exactly the same as before and don't treat me any different whether I'm in the wheelchair or with my stick. I want to thank my friends Sarah and David Law who have supported me through giving me advice from anything from medicines to getting help. They have listened to me moan and groan I think I've probably burnt their ears off! lol

Thirdly my best friend Sarah Mooney who has supported me through everything. She has been there when I've felt blue, when I'm not feeling well, when I'm happy and when the ambulance has come and I've been out of my face on morphine! I have told her embarrassing things that have happened to me that i wouldn't even have the courage to tell anyone else and she has never judged but have always had the up-most sympathy for me. I really don't know where I would be with out her! She is part of my world now and not just mine but my children's to as her and her husband Brain Mooney are my children's godparents. I want to thank her for her unconditional support and love.

I want to thank my family fourthly as especially my mum and step-dad Vanessa and Mark Brooks for standing by me through thick and thin. They have offered their support through my mum helping with housework or my step-dad taking me to the hospital or pain clinic. I don't know how I would have made it without him! Also my mother-in-law Jacky Hughes who does all she can to help me with getting appointments or looking after our children in the middle of the night. In their own individual ways they are all very special to me. I love them all with my heart and would do anything (in my power or what my body permits) for them.

Finally I want to specially thank my loving and supportive husband who has been my rock for so many reasons. I don't know if any of you know it but in the bible there is the story of Ruth. Ruth's husband dies and the country she's in goes through a famine she follows her mother-in-law to her mother-in-laws birth country where she goes all she can to help them survive. In the town where they live is a man called Boaz to cut a long story short he helps and marries her in turn saving her life. My husband is my Boaz. His a fairy tale come true. He saved my life in so many ways and have given me two wonderful children. He restored my faith in men and humanity. I am extremely lucky to have him and don't know any other man that's like him, he would do anything for me, push mountains if i asked him too. He works so hard he looks after me and our children, he does the night feeds with our youngest as well as the early mornings getting up with both the children taking our eldest to school and picking him up. He works so hard! I don't think a lot of people realize just how hard he works. I really appreciate and love him. He is my life, my love, my world without him I would die.

Thank you everyone who has helped me either through my life or through my medical problems and thank you to all you who have read my blog!

Thank you for reading! xxx

Me, myself and fatigue!

Hey everyone,

Been fatigued the last couple of weeks so been missing out on getting a lot done and spending time with the people who mean the most to me, my boys and my husband. Fatigue is horrible all you do is sleep all the time and when your not sleeping your tired. Usually when I'm fatigued I sleep until 12pm then have a nap in the afternoon for a couple of hours around 3-4pm then go to sleep for the night around 9-10pm so as you can see I'm having enough sleep. I really hate when I'm fatigued as I miss out on so much! I miss spending time with my family, doing the housework and meeting up with friends!

Also this week I've found out that we only have 30 points from the council to move which means we have no hope! A friend of ours (no disrespect) is on the list too and has more points then us even though its her, her husband and child and there's no medical reason! I don't understand! I just don't see the reasoning! I can't appeal against the decision until I receive the letter which hasn't materialized yet!

I also found out that the nerve connecting the brain to the eye is being damaged (which is causing all my eye problems) which is common to MS. Everything is pointing to MS but I can't get no help until I have a definite diagnosis. Its so frustrating! I hate being in "limbo land" nobody wants to help you in limbo land. I've felt so emotional today as I feel like I'm always the "bad" guy as I'm the one with the disease and putting the strain on everybody else. Our entire relationship I've have been told by people that I'm lucky to have my husband, its so good that he stuck around to help look after his kids, that his such a wonderful man and the sun shines out of his arse! (OK I put that one in!) now that things have changed I'm told to give my husband space, he needs time alone because his so stressed looking and worrying after me! don't get me wrong i am lucky to have him but his just as lucky!

I've always looked after my husband even when we were 15! I used to tidy his bedroom! I have looked after and supported him. I've been the best wife I could be and given him to beautiful boys and yet I'm always slated for not doing enough! I'm lazy because my husband makes the tea, I'm lazy because my housework isn't up to par anything he does or doesn't do is my fault. Don't get confused this isn't just his family but mine too! I try my best to do the housework now its not like we've always been messy i am very house proud and it kills me to see my house in such a mess but compared to some places and people (who don't have a debilitating neurological disorder) my house isn't to bad!

So from now on I'm saying "GIVE ME A BREAK" I'm trying my best and if that isn't good enough you know where the door is! I'm not being made to fell guilty over something I can't control. I'm not to blame for having this disease and if you don't understand educate yourselves!

On that note I'll say goodbye and hopefully see you all soon and wave goodbye to this fatigue!

thank you for reading xxx

Getting help when you disabled is easy! right?

Hey everybody,

This blog was inspired by a friend of mine and I just wanted to tell you about the struggle I have had and am still going through to get help.

When I first went to the doctor (who wasn't my now doctor) to get painkillers and to ask what was wrong, she was reluctant to give me the painkillers (I think it was because I was young and she thought I might have been getting them to get "high") She said that there was no way of determining "back pain" and that there was no specialist at the hospital for "back pain". For one that is absolutely ridiculous as there is a whole wing dedicated for back and neurological problem! plus what is a chiropractor then? Eventually she gave me painkillers (Co-Codamol) and I went home for the weekend. Over the weekend I was in so much pain that we went back to the doctors on the Monday and saw my now doctor who prescribed me Tramdol and sent me for an MRI. It toke about 2 weeks for me to have my first MRI and from the findings the doctor told me I had a slipped disc which was causing sciatica and was referring me to neurosurgery to have an operation. This was all in January and February.

All during February and March I was calling the hospital to see when my appointment would be eventually they told me my consultant was on holiday and wouldn't be back until May and even then he was fully booked. In the end of me constantly calling she said that if I was willing to see a register then I could be seen in April. I decided to go for this appointment hoping I could have my surgery and be back to normal soon. April came and I had my appointment, by then my symptoms had developed a lot more and she said that my symptoms don't "conform" to anything they had seen in neurosurgery as the symptoms in my arms don't co-inside with the slipped disc in my back. Because of this she sent me for another MRI on my lower back and one on my neck, She also sent me for a EMG to see if my nerves where affected. I got my appointment for the MRI 2 days after the appointment but the EMG I had to chase up my self and eventually had it in May. It was during this time that my symptoms had worsen and was begging the doctor to put me on Gabapentin (on advise from a friend) which relieves nerve pain, eventually he relented as soon as my husband asked! Also in April I applied for DLA.

In June I had another appointment with neurosurgery where I saw a different registrar who treatment was awful! He basically told me that there was nothing they could do and that was it! that's all he would say on the matter! I was crying and begging him to help me and he just sat there and refused saying there was nothing they could do! During this time my symptoms had got a lot worse and I was having constant migraines which made me sick so I couldn't take my pain killers so I ended up in pain and had to call an ambulance. I would have to have morphine and gas'n'air just to get me down the stairs! My last visit to A&E I begged them to admit me but the nurse just said that all my vitals where fine so they couldn't. She patronised me and said I was "depressed" and offered me Valium! Now most people believe that if you are in serious enough pain to need morphine then A&E's the place to go! right? not for me! all they did was to tell me I have "chronic" pain and to go home and go back to my GP and wait for the hospital appointments.

In July I saw the neurologist he was really nice and explained everything to me and sent me for a brain scan. I have been waiting for the appointment for the brain scan since July.I have continued to phone the MRI department but they have said that the referral hasn't been sent over so without that they can do nothing. So I then have been phoning my consultants secretary (who is never at work) to send over the referral also the neurologist said he would send me back to the pain clinic to put me on a proper pain management regime expect they have turned around and said he wants to wait until the results of the brain scan I don't see him until November! DlA are waiting for a report from the neurologist who during the course of August decided to go on holiday! He is back now but the secretary keeps saying she never receives anything from them even though DLA says that they keeping sending the information. I also applied to be re-housed as I live on the second floor of a block of flats I found out yesterday that we have 30/1000 points and in band C. Basically we have no hope!

So as you can see its not that easy to get help when your health fails!

Thank you for reading and i'll update you of any advance's! xxx

Between a rock and a hard place!

Hey everyone,

Today has been all about phone calls! We had to phone the hospitals MRI department (after a lot of phone calls and a lot of answer phone messages!) we found out that the neurologist still hasn't sent the referral to have the Brain scan so its back to getting on the phone to the neurologist's secretary (who is never at work by the way!)
which brings me to my next point of DLA is on hold because they need a report from the neurologist who has gone on holiday and is not back to work till sometime this month! The problem with that (as well as the money) is that the job centre want to send my husband (my carer) on a course which means he will be away 2 days a week from 9-4. That means I will have to take my oldest son to school dragging my youngest out with us (never mind the strain it would put on me going down the stairs then walking him to school!) and picking him up as well as looking after my youngest through the day by myself. When we say top the job centre that he is my carer and I can't be on my own they say from their point of view we would be on income support and DLA! 
In the view of DLA and income support is they need the report from the neurologist (who is enjoying his holiday!) for me to receive DLA (which I applied for in April) For us to be on income support we need to be on DLA! AHHH!!!
Its swings and roundabouts all the time and there is nothing I can do about it apart from keeping bugging the secretary.

The other thing that's infuriated me today is that my husband rang Merton Priory a week or so back to complain about having to remove the plaints on the balcony and ask if they could let us put our washing out there rather then using the communal one (as its difficult for us) and the supervisor agreed and said she would come Tuesday to have a look just to make sure it was OK. We were really happy and waiting the meeting positively. Well Tuesday came and went and after trying to get into contact with her we finally did today and her attitude had completely changed! She now refused saying she had spoken to the women who came before, who had drawn her a picture of the layout of the flats and she agreed we wasn't allowed.

I was fuming! I mean really how can you determine a layout unless you visit the place first? Its like any authority they will take the side of the employee before you. She was willing to hear our side before she spoke to her. Concussion, we have no rights Merton priory is a dictatorship and no matter how much you fight with them you will never win. Its suppose to be a fire hazard and I'm obstructing the "communal" area! Bollocks! (excuse my language) its just me and my neighbour and he agrees that I'm not "obstructing" him so I don't see what the problem is? I've been with Merton council for 4 years and never had a problem. I think its because they have just taken over and want to make their power clear to all their tenants!  

The "obstructed" balcony

I mean if you can tell me how they would "obstruct" my neighbour then by all means tell me. (mine is the door on the right and my neighbour on the left!)

The thing that makes me laugh is the right in front of my neighbours front door is a crack in the concrete! They say about up holding our tenancy agreement (which doesn't say anything about no plaints or not using the balcony for any reason) but they are not up holding their end of the tenancy! It says that they agree to do repairs to the building but it has been years that the crack has been there and when the "Nazi" came over to tell me to remove the plaints I showed her the crack and she said she would get a surveyor out to repair it. Its been 2 weeks and there has been no sign of the surveyor but they can send out people to petrol the block to make sure we're not using the balcony!

 

Sorry everyone but the wouldn't go in a line! lol This our the photo's of the crack, the crack aligned approximately 2 feet from my neighbours front door and the crack aligned with the stairs. As you can see there is more chance of my neighbour coming out of his front in a fire and tripping over the crack then there is of him tripping over my plaint pots and washing!

Thank you for listening to my rant and if you have a different opinion or feel the same please feel free to comment.

Thank you xxx

Disabled fringes of socity or social butterflys?

Hey everyone,

Sorry I haven't written in awhile I've been suffering from fatigued for the last week or so.

I wanted to talk to you all about a survey Scope did on the the invisibility of disabled people in day to day life.

• Now the survey says that nearly 40% of people ( who are not disabled or don't have a family member who is) don't know any disabled person.
• 90% of Britons have never had a disabled person in their house for a social occasion.
• 91% of people believe that disabled people should have the same opportunity as anyone else.

Now if 91% of people believe that disabled people should have the same opportunities as everyone else why have 90% of people have never had a disabled person in their house for social occasions and 40% don't even know a person with a disability? Is it that we just don't look past our own noses as a society or is that people just don't acknowledge disabled people as needing a friend? 

I think its more then that, I think people do want disabled people in there lives and as friends but are embarrassed not with being seen with a disabled person but of offending them. I understand that feeling I've been there myself even though I have been fortunate enough in my life to have been around disabled people and have family members who are disabled, I've had mixed reactions from them.

The first experience I had of meeting a disabled person was in middle school. We never hit it off as we has personality differences. I think a lot of people think they HAVE to be friends with a disabled person, you don't. If you don't get on, you don't get on. Its that simple! You wouldn't feel guilty or worried people would think bad of you if you didn't like someone who was able bodied would you? well its the same if you don't get on you don't get on. The disabled girls best friend used to parade her around like she was a prize and that she was the only one selfless and humble enough to be her friend! It used to irritate me (and still does) that adults would praise her for it! I don't see it as anything special! people are people to me and I never judge a person on their abilities but their personalities and actions where as she judged this person on how much attention and gold stars she was going to achieve with being her friend.

My second experience was in late middle school/high school and that was my step-dad used to drive a disabled mini-bus to collect and drop off children to and from a group called "squad". We sometimes went there with my step-dad to pick up and drop off the members or sometimes go in there to socialize. It was fantastic! I really enjoyed being there! The people where so nice and I got on with everyone there! I loved it! I used to attend a church youth group and I would make up performance's for us to do (the girl I was talking about before was also included in these performance's but never liked it because of the nature of some of the peoples disabilities as her best friend had cerebral palsy and she couldn't manipulate the situation for her own gain) and I loved being there and socializing. I would have joined their youth group if I could have! 

My experience's after that was at college. There was to disabled girls that I knew one was really nice and we got on well and not just me but everyone else and the other was just plain nasty! It was like she had a chip on her shoulder and hated anybody who was able bodied. Once I was waiting in the corridor (for my now husband) to finish his class when this girl burst out into the corridor. She looked really distressed so I asked her if she was OK and she recoiled in horror and held her face like she had been slapped! When her LSA (learning support) turned up and she told her I had slapped her! The women told me I was disgusting and toke the girl away disgusted! I was disciplined. It was just her and me in the corridor so I couldn't fight the accusation as I had no witnesses and I had more reason to lie then a disabled person right?

I don't know why she did this as I had done nothing personally to her but I think some disabled people have a grudge and are angry against the world for their disability so they take it out on anyone who they come in contact with them. I think this is why some people are nervous about becoming friends with a disabled person just in case they take offence or accuse them of showing charity how ever this shouldn't prevent people from becoming friends with a disabled person as not everybody is the same. I think people are also scared of what they don't understand especially if that person has a physical disability but again that is down to ignorance and if they only asked the person or researched then they will understand.

To flip the coin not everyone is so accepting. Some people can be right down nasty! They don't have disabled people at social events because of access and to be honest they probably don't care either! Some people are ignorant and don't think past their own noses and if it doesn't concern them they don't care! There is probably hundreds of horror stories of people bullying or being nasty to disabled people I think there needs to be more understanding on both sides on how to bridge this gap. People need to realize what its like to be ostracised from most things in this world without it being socially too. 

Hopefully one day we can all come to an understanding and the issue will be resolved or maybe it never will but if we all make a little more effort in life, smile and little acts of kindness to each other disabled or not then maybe we can make this world a little bit more bearable for all of us!

Thank you for reading xxxx

If you wanted to read the BBC article yourselves here is the link
http://www.bbc.co.uk/news/education-11139534