Living with disabilities

Firstly I want to say, today is a joyous occasion because Prince Harry and Meghan Merkle got married. To the happy couple I would like to say Congratulations and I hope you have a wonderful life together.

I had to get the happy stuff out of the way before I went onto what this blog is about.

I am a 31 year old Autistic, Dyslexic who has Depression and Muscularskeletal issues and live in one of the most expensive cities in the United Kingdom. Life for me is by no means a walk in the park.

I wake up every morning absolutely sore and in pain every day of my life. There has maybe been 3 days in the last 3 years where I have not woken up in pain. I have to take many medications some of which I have to take so that the others do not have an adverse reaction on me and cause me to have a stroke. Just walking to the bus stop in the morning causes me pain and if there is a wall that is high enough for me to sit on easily and get up easily from afterwards I have to use it.

I have had to suffer from abuse on the bus because my disabilities are what’s called a hidden disability and not obvious by the fact of crutches or a wheel chair. I have been called a “fat lazy bitch”, a “hypercondriac” and told that “I should put down the chrisps and get my fucking lazy ass to the gym”.  Can you imagine what that is like to hear every day just because I have asked an able bodied person to give up a priority seat so that I can sit down. There have been times that I have just wanted to cry myself to sleep at night wondering what is going to happen.

At work I have to have a Personal Evacuation plan because I cant walk down loads of steps safely. It is a major health and safety hazard. I have had to get a special chair ordered for me so that I am not always having to readjust the way I am sitting.

At home I have to have things that aid me in cooking and even going to the bathroom.

With all the things that are going on including the abuse I get on public transpportation I often find that I am struggling mentally. I find it hard to even get up and go into having a shower every day. I maybe shower once or twice a week. It can be so hard to remain positive when everything is so messed up with my own body. I am often thinking “at 31 this should not be my life”.

With my dyslexia I have to have special software at work which I only wish I had for when I am at home. That way when I am doing things like writing blogs I would be able to listen to the words that I am typing and pick up any errors I make. But this is so expensive.

I am trying to figure out how to survive all that goes on in my body and I have no help. Even worse, my benefits were stopped and that was helping me be able to stay in work 5 days a week. Since then I have had to take out credit cards and over drafts. I have had to take a woke given loan so that I could try and pau off some of the bills I acrued and now loose £500 of my salary every month just to pay it off. This is not the life I wanted to have. but I am stuck. There is no one to help me. I have had a GoFundMe Page to help at least with getting dyslexia equiptment and only two people have donated. No one cares to help someone who has had the world collapse around her.

Life with multiple disabilities is hard. Hopefully on Monday when I goto court to get the money back that was unjustly taken I will suceed.

If anyone feels like they want to help (no pressure) https://www.gofundme.com/dyslexic-equiptement-for-education

 

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Surviving

This word means a lot to me when I am having a good day that is. It signals that I am still standing even though I have gone through and am going through hell!

So to help me be strong I will tell you what I survived.

As a child I survive physical abuse from my family. I survived sexual abuse from the children of friends of the family who were in their teens. I was an undiagnosed dyslexic and autistic child which contributed to no friends and poor educatiom.

As an adult I survived an attempted rape. Various situations which I can put down to once again not understanding people and undiagnosed autism. And now am surviving emotional abuse from family once again.

I have chosen not to use the word victim because that denotes shame but I have nothing to be ashamed off. i have been let down and by people who should love and protect me… I will nolonger be ashamed!

Cancer

I am writing this post, which I have been inspired to write after reading a blog from James Morrison (an actor I greatly admire) who went through the cancer journey with his son.

So here is my story. I am 31 years old and in my life I have had 4 cancer scares dating back to my early years. When I was a child I had a suspicious mole on my leg so the doctors did not want to wait to see if it turned into cancer. I remember screaming my head off when they were removing the dressings but nothing before that. When I was in year 6 (aged 9/10 I believe) I had a sizeable lump on my left shoulder. Doctors once again decided preventative was better then the wait and see approach as I was so young. In my teens I had a giant lump grow on the back of my head which was so painful I could not sleep on my back as it would make me cry my eyes out. After tests and doctors visits turned out to be nothing more then a very nasty infection which meant LOADS of heavy duty medication, time off of school and lots of times wondering if I would smother myself in my sleep as I had to sleep on my front the whole time. Lastly, I had a 14 centermeter lump in my left breast as an adult. This was by far the worst of my 4 cancer scares partly because of the size and the location. I was only in my early 20’s and the first thought that ran through my mind was OMG they are going to have to cutt my boob off. This turned out to be benign but also a semi rare type of tumor called a phyllodes Tumor.

So I will go back a bit as I am going to talk about the last cancer scare I had. Growing up (when I hit puberty) I always had problems with my periods. They would be irregular, painful (abulences called numerous times) and many days off of school. It took me 3 years before I managed to get a doctor to prescribe me the pill so that I could at least make them regular. They would come on without any warning with occassions where they were so heavy bedding and school uniforms had to be thrown out because they just were no good anymore. Now you may be wondering why your getting this info first. Basically I am of the opinion this is what cased the problems in the first place. Every time I had a bad period I would notice that my left breast would get a little lumpy. After the period went so too did the lump so I was never really concerned about it.

This all changed when I had been inimate with someone I liked (as an adult) and he noticed that the lump had not gone!!! I FREAKED!!!! This had never happened before and never been noticeable by anyone before… I went into panic mode. I immediately went to the doctors at the first available appointment and said I was concerned. Because he was a male dotor he had to get me to book another appointment the next day with a nurse (Safeguarding you know) at which point he examined me. The look on his face whilst examining, especially as they kinda have to put pressure on it (WHICH HURT LIKE HELL), I started to panic again. The doctor clearly saw I was about to have a full on panic attack and said, “dont worry (yeah right) we will get you an ultra sound and go from there”. Though I did not leave with my fears eased, I did leave with an urgent ultrasound referral and a hospital to go to the next day which I did feel slightly relieved about as someone was taking me seriously. Now side note. I am not one to cry wolf. I only goto the doctor when I know something is wrong and the doctor will be the only one to help. My GP knew this about me which I think is why he took me as seriously as he did,

The next day I went to the original hospital they sent me to… This hospital seriously needs to get a kick in the teeth. When I explained why I was there and what I needed and that my GP had sent me there for an URGENT ultrasound they said “we can not help but we will put you in for an appointment for April” to put this in context it was January or February when I went there. So there I am, being told that I cant be seen until April, with a lump in my breast and all I could think of is I have cancer, I am going to die. I refused to let these people see me cry… I made it all the way to the bus stop to go home, and I called my mum to tell her what had happened unfortunately as soon as she answered I could not keep the tears in and there I was in the middle of the street crying my eyes out to my mum who honestly could of come down and kicked them all in the ass. What she did do however was tell me to come home, while I was coming home she was going to try and ring the GP and ask what we could do.

As the GP was running surgery it was like an hour after I got home where he once again asked me what happened and once again, I balled my eyes out. He was so livid but at the same time was the cooler head which helped. He said he would call me back again with a solution and once again, not to worry. He called back almost immediately and told me to go to another hospital which was closer to where I lived. He had spoken to the Ultrasound department and explained the situation. He told me they would be expecting me there asap so they could do an ultrasound. I was so tired from all the crying that I just thanked him. I could of thanked him for the rest of the day and he in the end told me to get off the phone or I would nmiss my opportunity to get it done that day. I immediatly sprang into action and almost ran there.

Getting an ultrasound on your breast is the most peculiar thing ever invented in the world. The gelly alone sent shivers down my spine. But I got it done. The ultrasound technicians said they thought it was cysts and that they didnt think it would be cancerous from what they saw which, as they were the experts in radiology it really made me feel at ease. They sent the results to my GP and within a week I was back at the GP hearing that I would be refferred to the Marlsden Hospital ( a cancer specialist to get follow ups)

It took a while to get the appointment for the Marlsden but I new it was in the works so I breathed easier… Kinda. The Marlsden had suffered a fire so they had to make sure that they had availability to see me as they were short on space but when I finally got there once again I had to have another ultrasound, this one however was an ultrasound with a twist! I had to have a biopsy done as well…. DUN DUN DUNNNNNNNNNNNNN.

Now what you dont know about me is that I am terrified of needles. My mum who was a former nurse ended up having to give me my glu shots as a child because doctors were scared to come near me as I would scream as if someone was trying to kill me so to have a biopsy done somewhere so visable was almost hell for me. Shockingly to both me and the technicians my eyes were GLUED to the ultrasound screen. I just wanted to see what they saw so that I could know what was happening in my body. After this appointment I had to meet the consultant. He was a very nice guy and the nurse was a wonderful Northern Irish woman who just lit up the room. Though I was terrified of what was happening she looked after me. The news was it. It was benign. I swear I nearly passed out. The stress, the tears, the anxiety really had done a number on me and coupled with the fact that the lump was more noticeable I was relieved. The consultant told me that thought it was not cancerious because of its size they wanted to remove it and set the date for two weeks later. I was happy and scared at the same time.On this journey I had to get my breatss out so many times honestly I started loosing concern about it. The problem was that I had to go to SURRY for the operation. This was because they had had the fire at their London Wards :S. Following on in the lead up to the opperation I had other appointments I had to attend… More needles and more of the same (getting my breasts out) but the day was finally there. Me and my mum went to Surry at silly o’clock in the morning, me, hunry and thursty but just wanting to get it over with. The lump had gotten bigger during this process to the point I had to start wearing my dads clothes (who was larger then me at the time) so that I could hide the mis shaped boob. I was so self concious of it it was unreal.

Had to wait ages to go to theatre because of the anestetics. But finally, the consultant arrived with a bunch of students to look me over before the operation. This was where I was going to make it fun. With all operations I fear they draw on you. This I believe is where all shame about my boobs left the building. I had a doctor drawing on them in front of medical students. SO planning on making it better I joked that it wasnt fair he got to draw on me and I was not allowed to. He left me with the marker so I drew on my hand. I wrote Left on my right hand and Right on my Left hand… Slighly confused the anestatists when they took me through but they laughed about it none the less.

Obviously I ont know how the operation when as I was unconcious throught (THANK GOD) but after I became an attempted escape artitsi. Forgot that when sitting down you dont feel the anestetic effects but when you stand up, lets say I hit the floor a few times.. Not good with a drain. They even had to post a nurse outsside my door just incase… Eventually the nurses almost let me get away with murder as I was bored the days following. AFter the operation, I had the healing process to go through this was hard because for two weeks I felt caged at home. The only time I went out was to go for walks to the top of the street and back or to the hospital. But I recovered. I then went on the journey of yearly check ups to make sure it didnt come back. I almost skipped through the door for the final check up… You would of thought I had gone for a premierof a movie. Finally got the all clear to not come back for more check ups and I was so pleased.

This journey was one of the hardest yet most rewarding ones I have been on. Yes I spent most of the time in constant fear and I was scared every time september came around for my yearly check ups but I met some amazing people as well. I met families who’s kids were not as lucky as me and had cancer. The strength they showed even if they knew it was a fight they were not going to win astounded me. The staff were so loving I could not believe it honestly. They were with me every step of the way and they were there for the tears, the fears, the pain, and the funny moments too.

So this rather long post leads into this. I have finally plucked up the courage to Brave the SHave on May 6th for Cancer research. I have been through the fear of wondering if its cancer and was lucky enough that the answer was no it was not. Many people however are not as lucky as I was. Many people young and old have to face this aweful illness and hope and pray that it never returns if they are able to beat it. So I ask any of you out there. Please donate to Cancer research UK or donate to my Just giving campaign for my Brave the SHave on May 6th 2018 https://www.justgiving.com/fundraising-edit/Suze-Fricker2

I am not an elequent writer especially not as elequent as some people who I admire greatly but this is an honest account and together maybe one day we can find a cure for all cancers so no one has to go through this again.

The darkness is closing in

I am struggling. With all the crap going on with my family its getting harder to smile. I am trying to keep my smile but at the same time it is very hard… I am trying to keep it together knowing that my family wont change and unless some people take pity on me and donate money so that I can get out of hell but praying is not helping. I am getting tired. Even had to start taking my sleeping pills again so I can get some sleep… the darkness is closing in

Abuse

Living with family should be a nice thing. But when the relationships are toxic there will always be one person who gets the worst of it. For me that is me.

I live with a narcasist who starts fights for no reason and causes problems beyond belief. This person is the reason that I do not ever ask her what she has said to others because I will never get the truth, I will get their truth but not the real truth. This person says they understand and support you and then goes behind your back and bitches about you. Even using phrases such as “what are you, your only a _____ you dont know anything”.

I also live with a family member who calls me really nasty names and treats me like I dont even exsist. When I have tried to bridge the gapall I get is anger, frustration and rudeness.

I am honestly worried about my own wellbeing there. I am stressed all the time and when I have to be at home now I close myself off from everyone to make sure that no one can hurt me. I am worried that if I dont get money to move soon I will start falling into a depressive episode like I have not seen for a long while. If you can help me even get 1/2 the money I can get a place to live without them and support myself.

If you can help me please, I am at my wits end.

https://www.gofundme.com/n54nq3-urgently-need-money-to-move

Let me tell you a story….

This is the story of a young girl, who didnt have the best start in life.

This girl was the middle child in a family and when her younger sibling was born her mother, who she later found out had post natal depression, would take her anger out on her. She would get into angry situations where she would take the frustration out on her and would get angry if she ducked out of the way.

This mother then met someone who had 3 daughters of their own and things went from bad to worst. The mothers friends children used to sexually assault the girl who was not even 10 years old. The girl learnt at a very early age things like what a 69ner was. When the girl said no her abusers would make up horrible lies about her to her mother to destroy her credability. The girl had no choice but to continue until some point when the families stopped talking to each other. The girl never knew why.

There was another family who was in the same school as the girl and the badness did not stop. The girl was petrified to stay with the family as the mother was cruel and the girls completely false reputation had followed her…

The school she was in she also had no friends. She would get beaten up many times because she just did not understand what was going on. In secondary school things went from bad to worse when she was attacked in her own home over things that never happened. Girls from the school kicked in her front door and she had to leave that school as she feared for her safety.

It wasnt until someone took an interest in her where she found out that she was dyslexic and finally started to get some good grades in school.

Later in life this girl, now an adult, started drinking loads. She ended up in very aweful situations with men and she just did not understand how to socialise with other people… This lead to an attempted rape.

This girl was completely alone in everything she has had to go through but she is a strong girl.

She is me…. I stand up now for those who are in pain. If there is someone I can help I will do so. I am no one special. I am just someone that n one helped when she was in complete agony.. No one would listen to me or hear what I ws saying. My own family used words like “slut” when talkking about me instead of unsderstanding what I was going through. Ultimately I was then diagnosed with depression after I took a pen knife to my hand…

Still today people dont help when I ask. I tried to raise some money on Go Fund Me so that I could get a place away from the home I am living in and all I was met with was family members telling me I was being greedy and other people stopped talking to me. This lead me to have to shut the go fund me page down. I have to survive in a house with people who abused me and ignored me most of my life and dont really care what I do but I am still standing… Even after 3 cancer scare,….Many operations and health issues… I am still standing…

This is my story.

Disappointment in my family’s eyes

I have come to the realisation that no matter what I do I am a disappointment in my family’s eyes. No matter what I do, no matter how well I do I am never going to be anything more than the screw up who ruins everything.

When I was first diagnosed with depression and had to leave my job my own mother told me that I had ruined Christmas and that I should go back to the place that caused me to self harm. This was hard for me to hear.

Maybe I should just give up and just settle in to this situation. I tried to raise money to become self sufficient for the first time in my life and that did not go well… I got loads of scammers come after me and people who wanted me to do unethical things for money which I would not do… I am stuck in the situation where I feel completely alone… There is no one out there who will help me and there is nothing I can do about it except hope and pray that one day I will be able to leave the environment that causes me stress and seriously affects my wellbeing…