Impossible situation

[Margretliljan]

Hi everyone

My situation is just ugh, I can’t wrap my head around it really.

I first became ill with FND in August last year, paralysis, pain, etc etc etc. In September my physio said I’d be walking with crutches by the end of the week. Well... it took further 9 months before I was walking with crutches. I’ve spent soooo much time on rehabilitation, 10 weeks in hospital, 3 months in a specialised rehab clinic and not to mention all the outpatient treatment I’ve had. It’s been a whole year of fighting my own body.

I started Uni this fall and I was just going to go with the flow. If I needed a wheelchair to participate in the degree I want, then so be it, and so it is.

Turns out, my lectures are in the ONLY building on campus that isn’t wheelchair accessible. It’s been a month with fighting for my rights to attend school like anyone else and it doesn’t seem to go anywhere. Or well, the classes have been moved to the first floor and I can get in through the back door. However, I can’t access the toilets because the doors are way too narrow and that kinda becomes a problem on the days I can’t walk at all.

Now I’ve involved the handicap organisation here in Iceland and they’re going to fight with me. Having to use a mobility aid shouldn’t take away your right to education. Having an illness doesn’t make you any less capable of being a good student and reaching your goals!

Not like this illness hasn’t taken enough from me, I also am completely dependent on my grandparents economy wise. I don’t have right to any financial aid at all, or well - I would get some income if I wasn’t attending uni and just laid on the couch. How messed up is that?!? Am I supposed to just live on air because I am not able to work? I am able to study because I can study from home on the bad days and take everything in my own speed. That’s not exactly possible when you’re working. + who would want to hire a person who has very limited mobility, doesn’t show up half the time and has to lie down every hour or so? It just doesn’t make sense.

Oh well, rant over I guess 😒

[123lisa]

Oh,I feel your pain it's bloody frustrating !

Sounds like you've had lots of help though I've had it 5 years and awaiting an in house treatment programme.

It's not right that you can't use the loo because your in a chair !

Keep fighting x

[Margretliljan in reply to 123lisa]

Iceland is actually really far a long in the treatment of FND. We have specialists and I got a diagnosis as soon as I flew in and was in the A&E. I’ve met a lot of people of every age with FND and most of them have walked out the treatment facility in remission. Quite fascinating!

It’s so sad to see that England and the US are so lousy in treating FND. If Iceland can do it with only two neurological physiotherapists that are specialised in FND, then I’m pretty sure other countries can do the same

[123lisa in reply to Margretliljan]

Omg that's amazing ! It's so ling to wait for treatment here

[cgarff in reply to Margretliljan]

I am in the US, and would love to actually see more options here. It is ridiculous what hoops you have to jump through to get anyone that knows anything about FND, let alone treat it. I have been thrown from one doc to doc in the last 8.9 years, and now. The Judge has orderes me to go to another one for 6 to 12 months.. My question to him is... WHO? It's a complete joke in the state of UTAH in the US! Well I guess I should say there is one group that says they can help, but insurance doesnt help, so each visit is not cheap.

I feel for you and know where you are coming from.

I do have to say though, the changes I have gone through since this started went from mild to worse, to horrible, then back and forth like riding a rollercoaster, there are days where I question myself as to why I am not working, to moments where it is like someone flipped the light switch on and my mind and body have their own tug of war and I never know when it will happen, so what do you do? Fortunately in the last year I have seen an increased improvement, but I still live on my rollercoaster, and I wonder if I can ever move back to being me,

I hope that makes sense.

Hopefully iceland will get their heads out of the past and make everything handicapable for people with disabilities, I wish you the best in that quest. As well as getting better.

Hugs from the US!

Cgarff

[Justdrea81 in reply to cgarff]

Hi, I'm in Arizona and I just started this journey in May. It IS rough getting treatment. I have been lucky to get decent doctors. My PCP told me "I know something is wrong, I believe you. But we may not have the ability yet to treat it". My neurologist told me "The part of your brain that causes migraines is hyper sensitive right now". This is after EMG testing and an MRI. He's the kind of Dr that only believes what he can see. So while he has been great with my migraines, and finding the B12 issue, there's nothing more that can be done from him. I am on gabapentin already for my migraines and it seems to help with the FND some as well, unless I overdue it. There's a mobility neurologist that I may get on the the list to see, but I don't know. It's so frustrating not to have a treatment for this.

[Samigarrib in reply to Margretliljan]

Hello Margret,I was diagnosed with FND in November 2017 and the College didn't allow me to return to complete my studies...... Do you ever have seizures like I do which can range between 15min to 5hours? I read experiences but never notice anyone having dissociative seizures or seizures.......

[pickleweed]

I'm so sorry that you're in this situation. Maybe you can take courses through an online university instead. Reading the book "Overcoming Functional Neurological Disorders, A Five Areas Approach" might help a bit.

[Hidden in reply to pickleweed]

I agree, and might I add - there are also tons of companies hiring "remote" employees. All you need is good internet and equipment at home