EditedLast reply


Disabled but not disabled enough- venting

Hi MSers, Hope you are well. In the UK MS is a disability by law. Such as certain cancers and HIV, if you didn't know we are protected by the Equality Act. I have relapsing-remitting multiple sclerosis and I am not in a wheel chair. However, I have difficulties walking but you won't really notice, I know how to hide it well. This year I met my MS nurse and we discussed PIP, personal individual payment (a verson of disability benefit) and she immediately attacked me saying you won't get the high level one which for very disabled people, again her words not mine. First of all, I have always worked, been financially dependent on myself and have paid taxes. My aim isn't to get money but if we can get support financially why not. Also I am currently unemployed due last year suffering from extreme insonmnia, and etc. So I had to quit my job I just felt like death in 8 months. I asked her to write me a letter to say I officially have MS as even when I was diagnosed there was nothing official and as I have family abroad I sometimes have to travel so I asked her to say my fatigue and leg pain so I have priority in queueing, again all true. She sent me the letter with symptons, I don't have, I asked her to change it as it was not accurate and would effect me workwise in a negative away. Her response was you are working and need to balance your symptoms. My response, no, I'm unemployed due to MS and rebuilding my life. What does this mean they just make up their own stories about patients and are incredibily rude but it gets worse. I said I want to apply for the freedom pass (discounted transport pass card) again if you are disabled you might qualify. She called me to say I am NOT disabled! I am not in a wheel chair. So down syndrome or autism isn't a disability? As most of them are not in a wheel chair, is this a conpetition? Because I am not taking part in it, of course there different levels of severity of disabled but don't tell me I am not and I know the law and my rights. She also said MS don't get this card, you will be rejected and I said at least I tried, is it your job to reject that application? She also said we can't use the word disabled, you need to be cautious. Personally, facts are facts, I am not offended by the word I think special needs is worse, I told her I am not ashamed of being disabled, what is the problem. She said your EDSS is 1, my disability rating. In my review, I said what review the lack of information and conversation from the healthcare system is concerning, till now no one told what is EDSS, how is it calculated, asked me what are my symptoms. There was no review. Even when given the treatment, other treatment options were never discussed, I had to go abroad to find out you can have pills too. I had to do a lot of research you don't tell us anything. I have had vertigo attacks, crawl myself to the bathroon because I can't move my legs and etc so you think I am a 1. Please tell us all of the possible symptoms so we can tell you what we have and the neuroligist can diagnose us and choose best treatment, how can I tell you a symptom or attack if we don't know. No, that was a different hospital you were in, the hospital is beside the point, she said we can't handle knowing all the symptoms. I am an adult and have MS and migraines don't tell me you want me to awake up and forget I have MS. Londrina (my MS's name) is apart of me, every second is torture, the injections are horrible, my legs hurt how can I forget and other symptoms. This toxic and delusional postivity it is the wrong attitude. It isn't about forgetting or being in denial it's about managing what we have. I had to tell her all of this because they are just crazy, you just want to drug me up no thanks and not listen to me. Nearly a year later now you offer me counselling, only 6 sessions, where was this when i was diagnosed. When I kept telling the GP for months something us wrong and no one listened to me, when it was already on my patient profile I have brain lessions and possibility of MS. No where and when at my lowest, I tried to commit suicide you wanted to give antidepressants. Ya, hun don't worry MS stole my life 2022, it didn't make me strong. I was already strong. So my advice is MSers stand up for yourselves, get informed and who is supposed to support us aren't, don't quit. They study the disease but we actually have it and in the end got my letter, I applied for PIP and will apply for the freedom pass. There is nothing wrong with being disabled, watch me do what normal people do and I'll do it better, we are adults give us facts and info. Stop throwing glitter and confetti towards MS, life isn't a pretend show!

No one ever thinks I am I can do majority of everything except my typing sucks due to a lesion on my spine. No doctor has tried to give me medication for ms even though my lp and MRI shows a lot of them on my brain and spine. I just keep moving to the best of my ability.


Definitely, it's about doing our best and managing our MS