Right now i am feeling that i am 10 steps forward then a week later 10 steps back. My speech was fine up to Monday when i visited the dentist. It was a windy and chilly day and this condition alone had a negative impact on me and my symptoms returned. This seems to happen every other week therefore it has become very unpredictable.
Due to this condition i have been physically in work for around 2 weeks this year and although i have been employed for 14 months i have only physically been in work for around 5 months in total. I am still unable to speak properly and to be honest as my condition is so unpredictable can see myself returning to work for a while unless they get to the route of the problem.
While it is good being employed it is not good being unable to go to work. I am currently claiming ESA but am seriously considering giving up my job as i dont know if or when they will decide to terminate mt employment.
Any suggestions would be appreciated.
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AngelaB-1968
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Hi Angela, I've been unable to work now since I started with sciatica then progressed to spasms up back into my neck, the spasms also bent me to the right and difficulty to get my breath, chiropractor then straightened my neck and jaw and I left his practice in an ambulance due to now knowing I had my first seizure and was stuck rigid in agony. This start was 31st of march two years ago. Since my dr left me in agony for a year arguing for Diazepan right from day one and sent me to 3 psychaiatrists instead of nuerologist, I've never been able to return to work, have been unable to drive since the sciatica so even though I was in pain I still understood things. Since my neck got straightened I went rapidly into FND but took so long to get to professor Edwards and am now still being assessed to go on long waiting list for inpatient program in London. I have missed work all this time. Being housebound, pain, bad sleeping, no company as live in the sticks so no buses, can't cope with noise so don't see daughter as she has 3 children under 7 one is a baby. I can really understand why you want to keep working as I never had the choice but your health has to come first. If you are putting yourself backwards then what chance are you giving yourself to go forwards. I know I cannot go forward without help as inpatient. Professor Edwards told me this last October. Maybe it would be best for you to not work and concentrate on yourself and improving your own quality of life. It's what is left in the end, how much quality of life you have. Hope this helps you as not working is sad but to just get better is worthy of giving yourself the time you need to concentrate on you. Best wishes Lisa-anne 🤗🤗
Thank you for your response. Yes i am really thinking about it. I am seeing my speech therapist on Thursday and will be discussing my options then. The registrar at my doctors surgery thinks i should consider returning to work being unable to speak properly and taking pain killers for the pain as she is concerned about the amount of sick notes i am receiving. I was quite surprised at the suggestion as i really would not feel comfortable going to work in that condition.
Health comes first as you said!
Apply for PIP it is not dependant on whether you work or not. In fact the government rightly gives it to people with disabilities to help them if at all get to work and help them in the workplace so if you were working you would get it if not you get it and ESA.
Can you have a chat with your boss, work from home?
I'm sorry I'm not trying to advice because iv been off work for 3 years now and have all these great ideas of things I want to do then most days it's a struggle to just get showered.
I can get to work as i am under the Accesd to work scheme where i get a taxis to and from work. It is not being able to work as my speech is very slurred at times and i get headaches and pain in my face. As it is now very unpredictable i may end up having to leave work rather than my employers terminating my employment due to health reasons.
Hello there, this is my first post and I am going through the same thing right now. I do the same as you and push to try and work as an automotive technician. My boss knows I have this problem and I had a good run the last 4 months after having been off for 6 months prior unable to even walk. Despite this he almost refuses to give me the open desk jobs they have, It's almost as if they are trying to get me to give up and quit. All my symptoms have come back with a vengeance the last two weeks and the harder I try the absolute worst I feel and a coworker has convinced the whole shop I'm just dehydrated because he doesn't see me drink water very often. I had gone to Mayo Clinic to be diagnosed and people knowing this still think they are smarter than the doctors. They are trying to help but it gets so discouraging knowing most people just don't understand how bad this really is. Just know you are not alone, hang in there and keep us updated! Hugs!
Can you go above your boss? Are you in a union and say you want to stay and move to another position. Maybe even get a disability charity/ helpline thingy sorry losing words now, to advocate for you as it sounds like he is trying to move you on when you are willing to stay. Would it look good for him to be publicly advertised as pushing a disabled person out the door rather than helping and I'm not sure where you are but aren't there laws in the workplace for people with disabilities?
This is what I like about this website. The people know what they are talking about. I'm a researcher and used to go mad when I googled something and found blogs with medical conditions and people saying just eat 20 oranges a day and your cancer will clear right up. Grrrr
As for your co worker ask then to explain how much water you should be drinking, how they know what you are drinking (are they spying on you, do you need to get a restraining order against them for their obsessive following of you) and the nutritional values of water. I had this discussion the other day with my Physio.
Obviously everyone needs to stay hydrated. In Australia I drank 3 litres a day as it is so hot but in uk I drink 1-2 litres a day.
There is such a myth that water has all these glowing properties. No it doesn't it is just fluid. It doesn't make your skin younger or any other magical thing. It is preferred obviously over drinking 10 cups of coffee a day as coffee has a diuretic affect and affects HR etc but I hate water it makes me vomit so I add either fruit juice or diet cordial. And if you buy a bottle of water look at the nutritional contents. There are none. It's called trace amounts.
You eloquently describe some of the hardest aspects of this disease.
Thank you.
It serves as a great reminder of what we have faced as a community and will continue to face going forward until more understanding is brought forth.
Hope to hear more of your thoughts in the near future
Best hopes for you.
Dan ) Seattle
AngelaB-1968.
You must be one of the kindest and best people on Earth. You have made every effort possible to adjust to others so you could continue to contribute with your skills.
Because of mounting disabilities, I have had to find other ways to contribute back to family and society. I am so lucky because I have a family that cares and adjusts so I can contribute.
The world may have to adjust a little so you can contribute because it will be a great loss to us all if you do not have that new avenue to keep doing what you do.
I love your courage to face this challenge. Knowing a little about your thought process, you will get this to work out.
With great thanks for your involvement in this community.
Angela, I am so sorry you have to deal with this, I have struggled with speech problems for 8 1/2 years now. We believe it was the first thing that we can think of that started my FND fun. I worked in an office and was supposed to be in the phones every day, but they were will8by to work with me for a while, but as symptoms progressed, I finally had to go out on disability almost 2 1/2 years ago. It is so hard to find work that doesn't require you to talk all the time. I would definitely see if you can work from home if you can without having to be on the phone. My work wasn't willing to do that for me. I keep hoping I can get back to work, but having an unpredictable voice creates issues. I feel for you, I really do. The last time I had my normal voice longer that a few words here and there was back in October last year. It is so frustrating not being able to communicate when you want to. My voice goes in 3 ways really, because normal doesn't happen.. 1. Hoarse.. Love this option because I can still get words out correctly and quickly, but not with much volume. Would much rather have it this way, 2. Stammered, or broken speech, have to think about what to say, struggle with words and the words don't come out correctly, and I'm asked to repeat all the time which is very difficult 3. The part I hate the most is when I try to talk, and I can't get the words out at all.
Best of luck to you, I hope your work will work with you.
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