Absolutely shocking.
This is an article about people appealing ESA, being in the same position i am now. Its absolutely shocking and really difficult to read.
Turning a corner maybe??!
I have appealed my ESA decisions, i have just written a letter that hopefully they can take into account when making the decision. It felt like therapy writing it, its hards to describe my life now. From a year ago when i was starting uni, getting straight A’s for the first time EVER! Now im at the worst ive ever been, physio has stopped all my exercises and completely stripped it back. Im sure my hip dislocated the other day, my knees are extremely painful so i barely get out anymore. I dont walk anywhere so i am thinking about a wheelchair, although not nice and i worry about my muscles atleast i could get out (with someone pushing me) for my mental state. My mum spoke to her friend last week that works in the benefit system. Aparently the government has made ESA and disability impossible to get on to save money. Loads of people have been kicked of and been told to get a job, its just really tough as i am in need and they dont see that, they just care about saving money and looking at everyone as a whole. But lets flip it over, on the postive side my bed is so comfy that i dont wake up in the pain i used to, i think i am sleeping better as well. I saw my friends last night for a couple of hours, it was nice to have a laugh and watch my friends and boyfriend on the WII just dance, bopping along to Beyonce. Although things are tough, i dont have a normal life, i cant walk most days, i am receiving absolutely no money and my mental health nurse called me a liar and doesnt beleive me, i feel i am dealing with things a lot better. I used to resent it, but i feel majority of the time (i still have wobbles) i feel happier recently and in a much better place than i was even a few weeks ago. I hope it lasts xx
Flu maybe baby
I feel dreadfully unwell, since Wednesday my fatigue has been unreal and i have been sleeping throughout the day everyday. My back is constantly painful and i am getting stabbing pains throughout my body and stomach. I feel like i have flu like symptoms or a virus. I cANT hold a conversation, cant concerntate and could barely move. Standing up feels the hardest thing in the world. I have just found this:
‘Flu like symptoms often occur when the thoracic spine becomes stiff. Passive or active mobilising techniques of the spinal and rib joints can alleviate the symptoms.
My ribs have been extremely tender and painful for a few days, they feel like all the muscles between them have been pulled. I hate find things like this though as i dont have a health professional i can ask about it, my gp still doesnt understand why i have pain. And just from typing this im straining my left hand and arm. Arrgh oh gosh i feel terrible. I am getting a hot water bottle for my ribs, hand and back and i am off back to bed. I hope your all well x
I think physically i am now at my worst. I am struggling to walk most days, i have quite a severe limp today and getting about is tough. I had a physio appointment today and she has stopped my exercises as my body is struggling and wants me to walk a little everyday, even just to the end of the garden to keep my body moving. She advised that i protest the ESA decision and i am not able or well enough to work, so i need to see my GP. I was sketching yesterday to distract from my pain, i might upload the pictures later.
I dont like Mondays
For different reasons than i used to. On Sundays my boyfriend and parents are home, i have people around to distract me. Then Monday BOOM everyones gone and i am home alone, in pain. Mondays are a lonely time. I started to knit the other day, i thought it would be a good distraction but after 5 minutes it was too painful to continue. After being squashed into a corner to get a job, i thought hell to it the other day and went to a radio gig with my friend i havent seen in nearly a year due to my condition. My boyfriend drove, i was out 3 hours and when it came to walk to the car i could barely walk and was in agony. I am not sure how i am meant to work, or maintain a job. I am absolutely terrified. BUT i have good news, dum dum dum, i rang the rheumatologist last week to request to be referred to Professor Grahame. She has written to my GP to ask them to refer me as she thinks its good idea. I think seeing a specialist would be the best thing for my care, fingers crossed. There was a reason i was going to write today, but i completely forgot so i thought i would do an update. Sorry ive not replied to some messages, my internet isnt working at the moment.
I hope your all well x
EDS is probably the worst thing to happen to me
I am so angry, at having this condition, what it does to me, at the people around me. On the same day of being told about my ESA I also received a letter from the student bursaries informing me i owe back quite an amount of money, i now have no money coming in. I received my letter today from the ESA stating the reason that i have been denied, it is ridiculous, pretty much the same criteria as DLA. He watched what i can do on that day, everyday differs and didnt listen to me. I am so angry inside with everything, with people not listening and not understanding. I think the next option is for me to go on Jobseekers Allowance, but what if i have a bad day and cant get there on my appointment, they stop my payment?! I dont think im well enough to get a job and maintain one. My aim with physio is to get a job and this is what were working towards, when i am ready and would be able to keep one. I have already been sacked once for my condition, i wouldnt like that to happen again. I think what i have realised is my life is going to be a big struggle. I do hope that i will get better with age, and that i will look back and be greatful for what i went through but how i have improved. I cant see that happening just yet, i feel stuck in a massive hole that i may never get out of!
things are getting difficult
the last few days have been so testing, i have received a massive bill of student allowance i have to pay back. Today i have been informed that i am fit and able and my ESA has been stopped. How i supposed to get a job when the slightest thing can make me dislocate, yesterday i was so fatigued i spent the full day pretty much sleeping. I have doubled my painkillers and some days that doesnt touch my pain. I could try to get a job, which will be difficult as i had to leave uni due to an illnes (what emplyer would want me) and hope that i dont get sacked within the first few weeks. I dont know what im going to do, some days i cant leave the house as i can barely walk. Its just seems everythings falling in around me and apart from my family and boyfriend i have nothing to live for, and no way of living. This is not a life, not one that i want to live. What am i supposed to do?!
Im tired so i understand how you feel
Something that gravely winds me up is people thinking they understand, who have an illness and beleive we are similar, who actually have no idea about my condition. The comments people have made to me is crazy, i have a sprained ankle i know how you feel now, im ill so we can struggle together. I dont think some people have any idea on how my condition affects me, but the situations/comments infuriate me. A lot of things i can ignore, brush over but this drives me crazy and i dont know how to learn to deal with it in the best possible way.
who am i
what i often find myself thinking is who am i now and how do i fit in with my friends? I guess so much has changed for me that i dont feel like the same person i was, i feel like i have mourned my old life and what i had. I hung out with some friends today and while they worried about university assignments and exams, i was trying to ring the physio. I guess i need to learn to be comfortable around people as the person i am now, but its so difficult as im not the type of person to sit there and say how much pain im in. So i end up staying out only for an hour or two until i can get a lift home. Or when i bump into people who i havent seen in ages and the dreaded question what are you doing now comes up. Depending on who is asking i may tell the truth or i might lie, but no matter who asks i never tell them what im going through. Maybe im embarrassed. I hate the fact that i dont work. At times i angry this happened to me, what i have to deal with and have a really bad habit or listening to other peoples worries and thinking there nothing, i wish i just had to worry about uni, about what to wear on the weekend. I hate what my life has become, i long to be normal and not live my life around hospital appointments and painkillers. But this is the way im made.
