Hi, my name is sue1964! Transverse myelitis, loneliness, low mood, and leaving work

sue1964

Morning everyone. Bit nervous being on here .i just felt that i needed to talk to other people that have transverse myelitis and share with you how it effects me and receive your comments and experiences.so here goes then.
So in 2019 i started to experience alot of weakness in my legs.i lived in the gym at that time and when i was running my legs just wouldnt run like they used to .i started experiencing numbness. In my legs  especially in my feet.they felt like i had a ton on cement on each foot.heaviness in both legs  i found it difficult to walk up incline and the stairs  .just lifting my legs  to get onto step was just an effort.  I have electric shocks  in my legs which are really painful it stops me walking. Every day i wake with chronic pain in my back .hips,legs feet .everg muscle hurts.its an effort to get out of bed in the morning due to pain .the initial standing is a killer. I walk with crutches now for support.i struggle to stand , i have no strength in my legs. Its like my brain is telling my legs to  move but they cant..the signals won't get through .the pain is terrible. The myelitis also effects my bladder .incontinence .so embarrassing.i cant walk that far when im walking  the only way i can explain to people is that it feels like walking up a steep sand dune .its hard walking on sand .thats what if feels like everyday for me. So in 2020 just as lockdown came in  i woke up to go to work .i worked in theatre for the nhs at the time. My kegs were like jelly and wouldn't do anything. Couldn't stand.went into hospital.had scans .mri s.bloodtests etc. Lumbar puncture. Mri showed demyelination  down both sides of my lower spine. And a lesion in the front of my brain. My neurologist has said it is more borderline MS but MS is hard to detect.my symtoms and mobility have deteriorated over time.i cant work. I left a job i loved. I lost all my friends .i feel lonely.i feel ive lost my identity.  I get low in myself.people look at you and say looks like there's nothing  wrong with you its not whats going on on the outside. It's because its on the inside.people dont understand it.so thats all about me. Would really appreciate your thoughts and comments   .thankyou

Tori_Scope

Welcome to the community @sue1964 It's great to have you with us! Thank you for joining, and for telling us about your situation.

We're a friendly bunch, so I hope we'll be able to put your nerves at ease soon enough. We were all new once. 

I'm sorry to hear that you've been facing some health problems over the past few years, and that this is affecting your mood. Have you spoken to your doctor about how you've been feeling? 

Many disabled people unfortunately face negative attitudes, including those with less visible conditions. This is something we at Scope would like to change. 

i feel ive lost my identity.  I get low in myself

We've heard some people compare this feeling to a feeling of grief, perhaps over the life they used to have, or that they might have expected to have. Is that something that resonates with you?

Kevin23

Holo I have similar issues with the legs being heavy and shooting pains .. my autism has got more open with outbursts head and facial tics... I did work as a teacher and had difficulties integrating people talked behind my back and I taught people on my own from a basement not seeing staff members for weeks .. the students used to call me names .. when I lived in Moston manchester  people set my house on fire ...lol with me in it  its difficult not being afraid all the time . I know it's hard to find help or be heard or fit .... I still work but I prefer my own company ... good luck .

sue1964

Hi there.sorry ive not replied sooner tbh i got cold feet to join.but im back. Im so sorry you're had such a rough time sounds like you've been through alot. Ýi like my own company as well to a certain level. I used to work for the nhs  as a health care assistant.i loved ny job but unfortunately the job was to physical and heavy i couldnt cope.i really miss ut. And feel very isolated and low at times.i been trying to find work that i can cope with my problems  but its hard ..how does your condition effect you tori?

Cher_Alumni

@Kevin23 Blimey, I'm sorry to hear about your past experiences and some of the abuse you have faced. It sounds horrendous. I'll be sending you an email shortly just to check in and make sure you feel safe and supported now. I hope you're keeping well.

@sue1964 Scope have some free Employment support services that might be able to help you find a job that works alongside your condition and is more manageable. Perhaps give the linked website a look when you next have time and consider getting in touch with one of our friendly teams. We also have a 'Finding jobs' advice page that has tonnes of useful information so maybe give that a read too