Suggestions?

[cr0w_]

Hiya!So I've been dealing with FND for just over a year now and it seems to be just getting worse. I've been mistreated at school so much it's horrible.

I was just researching into guide dogs, and although I most likely don't need one, I'd like to see some other people's ideas/opinions just to keep my mind at ease and not stress about it.

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I struggle with (physically):

Mobility (mostly in a wheelchair), zoning out a ton, falling over, feeling so wobbly/uneasy that I can't walk straight, migranes, eating problems, sometimes breathing problems, fast heart rate, chronic pain, extreme fatigue/tireness & twitches? (We call them tics)

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I struggle with (mentally):

Memory, stress, constant worrying, massive negative mindsets & depression

I just need some sort of advice for guide dogs/any other advice anyone can give me.

Thanks :]

[Zozo87]

hi cr0w_ your struggles and symptoms sound like mine from only 4months ago.

could you being doing too much? Is there anything you can do to postpone, delay, vacation, time out to just try rest.

Being in an environment that isn’t supportive of your wellbeing and recovery would be so difficult I am sorry you are going through that.

I went backwards in July-Sept after doing amazing in June, Im not in school though but I needed to take more steps back, focus doing only what was important and get as much help around me as possible. I got a new physio (who worked with Chronic fatigue patients) who focussed on my sleep and getting my parasympathetic and sympathetic nervous systems working a bit better (not the cause but certainly had gone haywire which was causing racing heart and shortness of breath). I also worked almost hardly at all… like 2hours a week if that, completely unplugging and about 2 months ago was like replugging in slowly… once to twice a week 10mins of movements designed by my physio. When i wanted to do something i gave it a go, when my energy was low I only rested and did the basics. Focussed on my physical improvements over cognitive. And i feel hand in hand the fog, memory issues lifted the more I could walk. Its so tiring trying to get moving again. But i see now week by week its helped me a lot. Im not symptom free but i am improving. I can walk 700m now before losing some coordination.

No advice on aides or support animals sorry, I was refused any aides which was awful but in hindsight helped me, but my symptoms were my own so please don’t compare.

What you need today might change from tomorrow, its okay to look at all the support you can get.

[cr0w_ in reply to Zozo87]

thank you! and im glad you're on the road of recovery!I don't think I'm doing too much, as most of the time I'm in bed.

I am only 16 & my gcses are coming up so school has been important (hence why I cannot relax as much as I would like to). But I guess the stress from school could be making some symptoms worse?

I'm thankfully on a waiting list for some sort of 'rehab' in a massive hospital that deals with FND patients a lot.

So, hopefully I'll be recovering soon, but it's so tireing at the moment.

Thanks for you advice & take care of yourself

[Zozo87 in reply to cr0w_]

oh yes that is a crucial time in school, I understand why all your energy would be going to that. I have heard the rehabs are so promising and I hope its a positive experience for you.

[VR053]

Hi! I totally understand what you're going through because I was going through the same thing when I was in school. I also have tics but they were way worse in school and all my symptoms were severe also because I have POTS so my fainting and dizziness and heart rate was all bad. Now I mainly deal with non epileptic seizures and fainting and some tics if I'm really anxious or see someone else tic. I've noticed it all becomes severe when I'm anxious like I said or when there's a lot going on like trauma it all just escalates. I'm sure the same thing happens with you because school is stressful especially with rude people. Also in school I used a walker my senior year or a cane so yeah people judged me and were rude so I really get it and I still use them now. My advice is to start getting into meditation either on Spotify or YouTube you can look up several meditations for morning and night and it helps me a lot and I think it will help you through school. Also I've been doing yoga for over a year since my symptoms got really bad and it's really helped me too or just staying active although I can't do much because of my conditions I just do yoga and I use resistance bands and try not to overwork myself so I think you should try those and see what works for you. I hope this helps! Also just to know that you aren't alone even when you're so young, you aren't alone and I understand what you're going through.