Hi, my name is lizzie

lizzie_loo

Hi everyone. I have very recently been diagnosed with transverse myelitis. It started in March, the main symptoms have now gone.. but im so fatigued. I used to be so energetic and full of life but I really struggle now. I constantly feel heavy.

iza

Hi @lizzie_loo, I am glad the main symptoms gone. Just take it easy and listen to your body needs. Relax and let the body get stronger. Would you like to try yoga Nidra ? There is great one on you tube. Press here. I listen to it from time to time. Remember to do small steps and only one step at a time. Try also set up yourself simple task to to the following day (plan them on the paper) it will motivate you to complete the next day. Something like to do list. 

Alex_Alumni

Hello @lizzie_loo and welcome to the community, thanks for reaching out about your transverse myelitis.

I too am glad to hear the main symptoms have passed, and I'm sorry to hear that things are a struggle right now. 

It can be difficult to reset our expectations of ourselves when it comes to energy levels, and it's important not to push ourselves too far. 

Can I ask you've spoken to your GP about how fatigue has been making you feel?

Do you feel like you're getting enough support to manage things at the moment?

If you feel we can help with anything in particular, please do ask

Alex

lizzie_loo

Thank you so much for the replies. I already feel better knowing there are people like me and who can relate to my struggles. I am a single mum of two and work full time. My family have been amazing. I am really struggling with the heat, which is something I have never experienced before. I always loved hot weather but it now makes my altered sensations worse and the last couple of days I've been suffering with a headache which is mainly behind and above my right eye, not sure if this is linked to TM? I might contact my doctors about the fatigue  I also have my next neurology appointment in October. I just feel like a completely different person, and I think because I'm not visibly ill like I was when it first happened everyone thinks I'm ok. Thanks again everyone and hope you're all okay l, especially in this heat x

bg844

@lizzie_loo
Welcome from me too. Look forward to seeing you join in the discussions.

Cartini

lizzie_loo said:

I just feel like a completely different person, and I think because I'm not visibly ill like I was when it first happened everyone thinks I'm ok.

Hi,

Unfortunately this is the view of people who do not understand invisible disabilities.  I won`t call them ignorant because I think it`s more of an educational thing.

If you were to look at me, you would think I`m fit and healthy (apart from the "covid curves" that I`m still trying hard to lose), yet the reality is I have a debilitating spinal condition.

Andy

lizzie_loo

Cartini said:

lizzie_loo said:

I just feel like a completely different person, and I think because I'm not visibly ill like I was when it first happened everyone thinks I'm ok.

Hi,

Unfortunately this is the view of people who do not understand invisible disabilities.  I won`t call them ignorant because I think it`s more of an educational thing.

If you were to look at me, you would think I`m fit and healthy (apart from the "covid curves" that I`m still trying hard to lose), yet the reality is I have a debilitating spinal condition.

Andy

Im so sorry to hear that. I put on weight from taking gabapentin.. Still trying to shift that. Its hard transitioning from someone who was so energetic to struggling. And I think we try an ld act like everythings ok? Well I know I do 

L_Volunteer

I agree @lizzie_loo. Most of us do like to act like everything's ok. No one here has to act like everything's ok though. We are all here for one another