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Life updates from my end! - uni + scary health stuff

Hi all!

I've been thinking for a while I should post an update since a lot has been happening and I haven't really been on the forums as much as I'd like to be recently! Also, sorry in advance if some things don't make sense, I had typed this out before but the forums must have glitched on me and deleted most of it. Smiley Sad

So, my main problem at the moment kinda started about three weeks ago (though it might have been going on for a lot longer, whatever it is). I started having these muscle twitches, which felt a bit like an electric shock. You know when you're falling asleep and suddenly you feel a jolt that wakes you up? It felt a bit like that. I'm not sure if they were myoclonic seizures, but the description sounds right. I was having these at least once an hour for four days, and I'm not exactly sure but they may have been triggered by certain things (e.g. sudden loud sound, staring at my fireplace). On the third day of experiencing these jerks I went to emergency, but they couldn't find anything immediately threatening (they said it might be a reaction to my meds, also said that'd be unlikely since I've been on my meds for about two months now). On the fourth day I managed to get an appointment with my GP, who wasn't sure what was happening but he prescribed me some medication regardless. These made the jerks go away, however I am worried since these meds can be addictive (even though I'm taking a very low dose) and it's not a long-term solution since no one seems to know what the problem is. Since then, I've been having a lot more problems. I have nerve pain (mostly in my hands/ shoulders, but also sometimes down my legs and arms), and my hands and feet have been tingling. I've also felt a lot less concentrated lately, but that could just be a side-effect from the new meds. I forgot to take my new meds two days ago, and the twitches came back the next day. 

Due to this, my ability to get through uni has suffered. I wasn't able to submit an assignment on time yesterday (despite having an extension), so I went to my GP so he could sign a special consideration forum for me.  He also said my symptoms could be indicating multiple sclerosis Smiley Sad but he also said we should 'just wait and see' first, since I've already had an MRI this year (to see what was causing my pulsatile tinnitus) and it showed no lesions. But 1. my MRI was done without contrast, so lesions would be hard to see, 2. my MRI was done mainly to check for skull-based tumours (none, thankfully!), so the radiologist wouldn't be looking for lesions, and 3. I didn't have an MRI of my spinal cord. I think I've said this before, but I never thought I'd be so desperately urging to get a referral for a lumbar puncture Smiley LOL.It'd help diagnose potential intracranial hypertension (which may be causing my tinnitus) and/or MS. It's just so frustrating never getting any answers while I feel horrible. The potential for it to be MS or something else chronic is scary Smiley Sad but to be honest I've been considering MS since I started getting some (lesser) symptoms around November last year. The biggest thing for me (apart from how I'm going to manage uni, because that's a problem regardless haha) is that if it is MS, I'm not going to be able to donate blood in Australia again unless more research goes into autoimmune diseases. Also, recently I purchased roller skates and they're so fun, but I haven't been able to use them much recently since I don't want to risk injury skating with nerve pain/ twitches. 

As always, I'm really worried about uni. I've never had to apply for special consideration before so it's scary. I really, really don't want to withdraw again but I've been too unwell/ too anxious to focus on my assignments...

But other than that, I think I'm doing reasonably okay mental health-wise, considering the circumstances haha. Anxiety has been a lot better (when it's not directed at my health), like I've managed to join a few uni group chats and I participate in the a lot. I sometimes get the 'why did I say that? That was a stupid thing to say', but it passes quicker. I haven't been able to talk to them on ZOOM yet, because sometimes I think 'sure, they like me online, but they won't like me face-to-face'. Hopefully sometime soon I can convince myself to go on! Recently I applied for and got a new and exciting volunteer role about promoting and creating activities to promote mental health for young people of multicultural backgrounds in my town, but it's so weird as I had to have an interview over ZOOM, and usually I'm so nervous and have things written down before I go, but this time I was just completely fine with it all! I also might apply for an executive role for one of my uni clubs, but I'm not sure yet. 

So, that's my general life update! Certainly a lot has been happening. Today I'm feeling quite unwell so I'm just trying to have a lazy day out in the sun in my hammock Smiley Very Happy. Hopefully this doesn't glitch out when I post it again! 


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Re: Life updates from my end! - uni + scary health stuff

Hi @Hozzles the post seems fine to me, everything makes sense Smiley Wink

Anyway, I'm so sorry you're going through that! Health issues are confronting, especially when you don't know what exactly is going on. Thanks for entrusting us with this information, we're here for you if you need support. Heart

 

I noticed that the doctor is waiting on conducting further tests, have you spoken to them about your concerns with the last scan? Or perhaps you could discuss this with someone you trust, like close friends? I think the doctor should be providing clarification on why they haven't conducted another MRI scan that is more suitable for your current condition, as a patient you have the right to know exactly what is going on.

 

I also saw that you're worried about uni, have you been able to talk with a tutor or academic staff about it, or someone you trust? I hope your uni will be able to accommodate for your needs and help you out.

 

I'm glad to see you're doing well mentally, especially considering your circumstances. Your new volunteering role sounds so cool and valuable - it's so important that we raise awareness about mental health in the community. And I'm jealous of your lazy day out on the hammock, sounds super relaxing! Smiley Very Happy

 

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Re: Life updates from my end! - uni + scary health stuff

I'll reply to you later @featuringme, just having a bit of a breakdown at the moment I feel I need to type out so I can feel better for now. Smiley Sad

I don't know why, but I suddenly got so upset. I guess everything just hit me at once. I'm so sick of quarantine. Usually I'd be on a holiday right now, but now I don't get one. I want to see extended family and get out of the house. I'm so disappointed in myself because no matter what I do I can't seem to make it through uni. I feel so stupid. I used to get HDs on every assignment, but now I can't even submit anything or type one word. I don't even know if I can make it through uni, and no one else seems to think so either anymore. My mum keeps saying to me 'why can't I sit next to you and help you do everything word for word?' like?? hello, I'm an adult in university, stop treating me like a child? 'Oh, so you expect to get things done the way you are now? You don't do anything'. Thanks.

It's 3am right now but my Mum heard me crying so she stormed in and yelled at me that I should get a proper sleep schedule, that I said I would try to fall asleep earlier today (try!), and that I'd feel so much better if I just exercised more. Mind you I tried to do some relaxation yoga today but had to stop because I was in a lot of pain from my nerves. I'm just so scared about my health. I already feel like such a burden, and I don't want to make it worse. My Mum also told me 'you'd need to have a pretty sharp mind for your new volunteer thing, so you better start getting outside'. I told another family member that the GP said it could be MS, and they were like 'what? Did you say MS? No, it can't be. It's definitely not that. Surely not, please don't think about it being MS', and they sounded sad the rest of the conversation. Thanks, good to know that's your reaction. I feel like absolutely no one believes me, regardless of what it is. My doctor doesn't want to do any tests. My Mum tells me it will go away if I walk every day lol. I can't help but think what if it is something long-term/ serious? Like, what would my life look like? Would I even be able to continue with uni? Travel? Or would I just be a burden to everyone?

I'm meant to be getting better, but it's not working. I keep disappointing everyone. Last week my video session with my psychologist was cut short because she thought I was doing better so there wasn't a lot to talk about Smiley Mad. I'm not getting the help I need. 

I'm just so overwhelmed by everything. I'm sick of health stuff. I'm sick of COVID stuff. I haven't taken one photo that I've liked of myself all year, my self-confidence is basically 0, all I wear is the same things all the time on rotate. It seems arbitrary but I feel like I'm putting up a facade that I'm doing better, because I have to be. I can't keep disappointing people all the time. I can't keep disappointing myself all the time. I need to grow up, move out and get a job and friends but I can't. I just don't know what to do, or what to expect. The future is so scary.

Sorry for this 3am ramble, I know it's a stark contrast from my earlier post but ughh I'm frustrated. I'm gonna try and go to sleep now. Goodnight, all! Heart
  

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Re: Life updates from my end! - uni + scary health stuff

Hi @Hozzles, it rly sucks that your mum isn't treating you very well, and that you're not getting the support you need. People shouldn't be treating you like you're a burden. I hope writing this post was cathartic for you Heart

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Re: Life updates from my end! - uni + scary health stuff

Aw @Hozzles sending you lots of comfort right now. That must of be so disheartening for you to have those comments made about your physical and mental health. This year has been so, so hard with covid and I can imagine how much harder it would be trying to balance uni, health related stuff and low self-confidence to top it all off. I can totally relate with that, not having opportunities to get dressed up and do nice things has also meant that I'm not putting as much time into making myself look/feel nice. 

 

Please know that we care about you here and whenever you need to rant you are more than welcome to. Thinking of you today and I really hope tonight is better and you get to have a good rest Heart 

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Re: Life updates from my end! - uni + scary health stuff

Hey @Hozzles I'm sorry there is so much going on for you right now,  I hope you were able to get some sleep.

That really sucks that you'd normally be on a holiday now and that uni is so tough. Its really such a shit time and I think there is this pressure to pretend its not shit anymore? But like it still very much is. 

That is also so annoying about your psych session being cut short, I can imagine that was quite jarring. Is that something that you would talk to them about?

Health issues can be scary for sure, we are always here for any venting that you find helpful Heart 

Its so sad to hear you say you feel like a disappointment, you are such a valued member of this community. I'm still pretty new here but I feel very privileged to work on a forum with such a welcoming and supportive vibe that I know you have contributed to creating. Hope today is a better day Heart

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Re: Life updates from my end! - uni + scary health stuff

Hey @Hozzles I'm sorry to hear stuff is so hard right now Smiley Sad There's a lot to unpack here so sorry if this ends up being a long reply! On top of all the health stress, falling behind on uni, and your supports not really supporting you- I can understand why you would be feeling so overwhelmed at the moment. The fact you've been trying to balance this all and are still trying to help others by taking up this new volunteer job is bloody awesome- it shows a lot of your strength. I guess worrying about our future especially when it comes to health can be really scary and can make us feel pretty hopeless and overwhelmed Smiley Sad I'm really sorry this is going on for you, I wish I could make it go away for you.. But life sucks sometimes hey.. It's not fair.. Smiley Sad

I think with anxiety about the future, what has helped me is thinking of what's the worst case scenario- and would I be able to deal with that? Usually there are ways of living in line with your values and with the right support you can have a good quality of life- us humans are quite resilient like that! Would it be helpful to focus on the now, looking too far into the future can be unhelpful? At the end of the day worrying about things we can't control can just leave us so exhausted and overwhelmed.

It sounds like your mum is trying to support you but is missing the mark a bit hey? It does sound like she's worried but her attempts to fix things are invalidating and making you feel like a burden? Your mum yelling at you for not being able to sleep is not okay Smiley Sad You were crying as well, that would be even more upsetting.. It sounds like your other family wanted to skirt around the topic, whether that was from fear or denial, that wouldn't be so reassuring or validating for you. On top of that, even your psych hasn't picked up on you not doing well Smiley Sad And it sounds like you're having so many negative thoughts about yourself- We don't think you're a burden or disappointment at all. In fact it sounds like you try really hard and care about others

How are you feeling today? Please feel free to vent some more if it's helpful, we're here to listen Smiley Happy

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Re: Life updates from my end! - uni + scary health stuff

Hi @Hozzles

 

It sounds as though your pretty stressed out at the moment, would that be correct? Sometimes when our minds are overloaded with high amounts of stress we can experience physical bodily symptoms. Do you think that the jerks, nerve pain or numbness in your hands and feet could be stressed related? Perhaps as a result of your anxiety? I know from my own personal experiences, I have sometimes experienced shooting pains and tingling in my fingers during an anxiety attack.  

 

As for the MS, I think its important not to worry until you get a proper diagnosis! I understand this can be extremely difficult especially if you are already feeling anxious but try your best to push the negative thoughts out of your mind! However, if you find it is really affecting your studies, perhaps you could go part-time? This would significantly reduce your work load and you'd have more time to focus on fewer assignments! I went part-time during my honours year due to anxiety issues and it was the best decision I ever made. 

 

I hope this helps you somehow! And feel free to keep us updated with any thoughts/feelings Smiley Happy

 

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Re: Life updates from my end! - uni + scary health stuff

@Hozzles  I don't have a lot to add, but I hope you get better soon. It all sounds like a lot to deal with. Smiley Sad It's scary that the GP thought it was multiple sclerosis. I really hope that the doctors can get to the bottom of your symptoms and work out how to treat them.
The volunteer role sounds so cool! I think you would be great at it. Smiley Happy I'm also glad that your mental health has been improving and I love how you're so optimistic about the future, despite all the stuff that's been happening for you right now.
Thinking of you. Heart