2 years before I got diagnosed I started a degree with Open University. I wasn’t happy with my life or my job so decided to do something about it. I was doing really well. I got diagnosed and put it on hold because I just didn’t have room in my head for everything going on. Fast forward 5 years and I thought I would go back to my degree. I know that I won’t be able to do the job I wanted as it would’ve been quite physical, but I really need a reason to believe in myself so thought I’d go for it anyway. Excuse my language but this ******* MS is out to ruin me. My Oscillopsia is so bad that I can’t see to read. I can’t move forward and if I have to give up I’m giving up on life because this was the only light at the end of the tunnel in this shitty miserable life. I just want one thing to go right and it’s out to get me. It’s robbed me off so much in five years. I don’t know what to do. Anyway I’m sorry for being so miserable. I just want to prove to myself that I can do SOMETHING and I bloody can’t. I can’t face the rest of my life in this job, I can’t face the rest of this life with no hope.
Being robbed of something that ‘normals’ take for granted - building a career, having a child, going for a walk, reading a book, running for a bus, peeing reliably and without drama - really hurts. And MS seems to have a nose for the loss that will hurt most, or sometimes it is more a matter of the last straw - just one more loss that tips us from being just about OK to not OK at all.
I have nothing to offer except the sympathy of someone who also has wept those kind of bitter tears and no doubt will again. So far, the skies have always cleared a bit and life has gone on and been OK again. Not that I would have thanked anyone telling me that at the time, or indeed believed them!
But sometimes it just hurts so much in the moment, and there’s nothing I know of to be done except hunker down and survive the squall. I really feel for you. Hang on in there.
Have you informed the OU of your MS? If not then do so, because they will give you all the assistance they can. I took a degree after I was diagnosed, and informed them after my first year as I didn’t know how I could participate in a mandatory summer school. An assessor came to my house, not to check I was telling the truth, but to see what help I needed. They provided me with a new computer as mine was ancient and not suited to my needs and I had no money for a replacement. They also gave me a digital recorder to record tutorials. If you need to go to summer school you can have an assistant, either provided by them, or someone you know, who receives travelling expenses, accommodation, and meals free of charge. If you have to take exams, you can have an invigilator at home. I can’t recommend the OU highly enough for all the help they gave me. It gave me purpose and hope when there didn’t seem to be much of either. At my graduation I came close to tears watching two other graduates receive their degrees, one blind, one in a wheelchair and clearly very ill. Please don’t give up, it really is possible. Xx
I agree with Gingernut, if you want to continue with the OU get in touch with them as they can help so much. I was diagnosed half way through my degree and assumed that would be the end of it but it wasn’t. They had a whole long list of ways to help and I even had a home exam one year as I was relapsing. It gave me a purpose too and something other than MS to think about. It was something I could do just for me and I could take it at my own pace.
Wishing you well
hi sorry about your issue I have eyesight issues with ON and typing or reading or watching can be painful.
Can you not get your course work on talking books? Blind people do open university courses etc i am sure they do so there must be provision for it.
I wouldnt give up to be honest there is always another way to study.
You can do something its just the monkey chatter in your brain which is convincing you that you cant.
I used to teach I.T. in the community and one of the best experiences i had was a blind teacher teaching I.T. to adults. Most were partially sighted but a few had no real sight. She was limited sight her eyesight was going slowly but she was determined to lead a normal as she could life. we had 10 students, i was privileged to have her as a tutor. she helped so many just use the computer. she didnt have MS and i wasnt sick then, but those people showed me there is always a way.
I taught a young man how to send an email. He was on his way to check out a university up north when the car he was in crashed and he was left severely disabled. he was a major in mathematics, so sad. He had no coordination, so i virtually had to teach him how to use the mouse before we could even start. I spent a week teaching myself. he was with me for over six months and passed ECDL and clait i was very proud of him. Roger his name was an amazing guy, he is still in our town and i bump into him occasionally. such a shame but he never gave up and now can use his computer with a mouse.
what i am saying is there is a way and you have to find it.
do not let the MS rob you of anything else.
you are just feeling down its normal and natural reaction. we all get like that. I was enjoying writing a blog but find it hard now as my eye hurts and its blurry even with glasses. If i have my back ground too light it triggers off an ON attack.
try hun, to find a way. join a group on open university and talk to other students with visual issues.
dont give up. tell your monkey chatter to go do itself lol. big hugs. xxxxxxxxxxx
I’m with Crazy Chick. Blind people do degrees, hold down jobs and the OU will have a support system. I know a great coupke, she has RA quite severe and he is blind. He uses the computer. I remember being gobsmacked to see him doing the ironing!
Try AbilityNet. They are a charity run by disabled ppl to help with tech for disabled people. I had a bad time few years back and investigated voice activated software. Their advice is second to none.
i also have a friend who went to uni and graduated, she’s totally confined to wheelchair and has assistance dog. So don’t give up - listen to gingernut there is help available. think rather ihave to do it differently - now how do I get the help to do this??