I cant help but feel like Ive gone backwards at the moment. I feel like I was doing well and now Im not.
I am 5 months post occipital stroke (caused by an injury suffered in a fall). I lost some vision in both eyes upper right hand side. I just cant accept this happened to me, I wore glasses until I was 23 and then was lucky enough my parents paid for me to have laser eye surgery. Ive loved having 20/20 vision and cant accept that now I dont.
I feel like an absolute fraud as Im back at work as a midwife that I worked hard to become and so happy to be back, the DVLA granted me my driving licence back and I pretty much do everything as normal.
But Im not normal am I! Everything is slower and I get tired so quickly and Im petrified that I’ll go completely blind. This is how I felt when I first had the strok, Im scared to sleep incase something happens. But know I need to sleep as sleep helps with symptoms and my mood. But the last week I cant shake it.
I have an appointment on Thursday with the opthalmologist and Im petrified shes going to say everything is worse or that I will eventually go blind.
Nobody really understands either, I look normal and act normal and get on with my busy life with 3 kids and working.
I am so grateful I get to do these things and then feel guilty for ‘moaning’. My mum has recently been diagnosed with lung cancer so I cant talk to her as she and my family has enough going on. I am having CBT and thats helped with panic attacks but I dont think it has helped much with my fears and frustrations.
Maybe Im just exhusted and need to slow down, maybe I need to see my gp, maybe I need medication, maybe I need to get a grip.
I just dont know, but I know I feel better for writing it down.
I cant help but feel like Ive gone backwards at the moment. I feel like I was doing well and now Im not.
You did well to post how you are feeling. Writing it down will help you sort it out in your head, but it also brings it to the attention of others in a similar position. It could well help them and you might get some feedback that is of use to you.
Be brave, you will cope. Share as much as you can, don’t feel you have to hide it all away.
Hi @Emmap1982 and welcome to the forum, even though we’d all happier if we never had come, it’s the best place to seek help, get advice or just to chat.
And to know that there is hope for the future
The trouble with all stroke recoveries is that it’s always 2 steps forward and 1 step back. You are currently on the 1 step back from your progression and that’s when we start with the doubts and negativities.
Oh I know that one so well, it’s not like you can stop everyone you meet with to explain this. But the fatigue of this is very real for all stroke stroke survivors I’m afraid. You may very well need to slow things down for a time. You are still suffering the effects of shock from stroke and enhanced by the news of your mum’s lung cancer. Take a break, take a breather and as you already have, keep on getting it off your chest here. We all actually do understand here so this is a good place to take yourself and it’s all good counselling for you here
My MIL is now at home recovering from a lung cancer op she only had done last Wednesday. She had the middle lobe removed (right lung) through keyhole surgery and is doing very well indeed for an 80 year old It’s surprising and wonderful what can be done these days for cancers.
So think positive and be strong for yourself and just be for now. It’s late in the day and that’s when all fears and negative thoughts like to creep in and keep us awake all night. Maybe try listening to some relaxation therapy youtube. Someone posted some on the forum a few days ago which seemed quite good. Maybe try Night Kalms at bedtime, they’re a herbal sleeping remedy. And that is where I need to be right now, so I’ll bid you good night and send you a few hugs
@Emmap1982 sorry to hear you’re struggling a little at the moment. It is very normal to feel like you’re going backwards. That does seem to be the way of stroke recovery. Being fatigued can also make everything seem much worse.
You have done so well getting back to work so quickly. That will be exhausting & then you’ve got the kids to look after too.
Everything is slower post stroke & we have to find a way to accept that. Try not to worry about things that haven’t happened yet. Your opthalmology appointment will probably be fine. You’ve been given your licence back so your eyesight must meet their standards.
Yourum being diagnosed with lung cancer is probably adding to your anxieties too. Its a big thing to deal with.
Each time you feel like you’re going backwards hopefully the next move forward happens quicker. Try & get some rest time in too. You need it.
Good luck for your appointment on thursday.
you are going through a rough patch.
Reminds me of me 3 months ago when every night I was sure I was going to die
Anyway, I didn’t, and slowly started rebuilding myself from the inside out…
All I can say is that I worked out what needed to be done… and you can too.
I often visualised things mending… but I can’t say it was any one particular thing
It was slow steady hard work, with my mind and my body… I am in a different place now
wishing you calmness, and positive thoughts…
good luck, Roland
@Emmap1982 you’ve got a lot of stress worrying about your mum, being back at work, your eyesight, children, it’s a lot for anyone, let alone someone who’s had a stroke.
Try to pace yourself, take a little ‘me time’ whenever you can.
Also try counselling as it can help, it did for me.
Hopefully your appointment on Thursday will give you reassurance.
@Emmap1982 I hope yout appointment went well. I can relate to some of what you are feeling.
The fatigue, being a fraud, going backwards is exactly where I am at the moment. 3 months after my ischemic stroke i have no visible effects but my brain isnt the same and who I am doesnt feel right. Ive just returned to work on phased return and if im being really honest, which is painful, I dont think its going to work out. Im completely shattered even after all my breaks and finishing early. My days off im still too tired to do anything else.
I have bad eyesight and wear contact lenses and really need to see optician because its been worse since the stroke and ive been ignoring it. You can probably tell by now i bury my head a lot.
I think youre right to want to slow down, 5 months is not very long for recovery even though we are all different and also your mums diagnosis will have had an effect on you.
I wish you all the best and thank you for posting because your post has helped in so many ways.
@MrsAli 3 months in stroke recovery is still early days. I feel your frustration at not being able to do anything after work, it’s draining, your brain is working hard and there’s nothing left after a work shift, I know because it happens to me. I’m further down the road, however I returned to work around the 5 and a half months mark on a phased return and to be honest that was all I did, I had nothing left afterwards.
Don’t be afraid to acknowledge you need to take life a little slower, don’t push too fast or fatigue sets in, be patient and kind to yourself and your body. Your brain is still recovering and repairing, this takes time.
Best wishes and please make time for the optician appointment
Your bad eyesight is putting a needless drain on your system you don’t realise, and will be the cause of some of your fatigue. You can’t afford to neglect such things now. Getting your eyesight checked should be on the top of your list of things to do. Do it now, it’s only going to lead to bad headaches and worsen the fatigue.
You 're still too early in your stroke recovery to be neglecting such things, the first 6mths are the most crucial for getting yourself back to as normal.
@MrsAli you’ve done amazingly well to go back to work so soon after your stroke. Be proud of yourself but also listen to your body. It sounds like you need to slow it down a bit. Are you able to reduce your hours temporarily until you feel stronger? I’m 17 months post stroke & only just returned to work. It’s tough & exhausting & i’m only part time. Is it worth getting your employer to do an occupational health referral to get an impartial view on how you’re doing & if anything can be done to make it easier for you?
Please try & find time to get your eyes tested. That may help with your fatigue.
Wishing you all the best.
Thank you @Mahoney @Mrs5K @EmeraldEyes. This is why i love this forum, the support and advice of the members is amazing
Im going to book opticians, dont know why ive left it so long
I should have mentioned i have Occupational Health from work on Friday, any tips on what to ask and what not to forget to mention. I obv have fatigue at the top of list of ongoing issue.
So far work have been good about cutting day short but not going to pay someone on reduced hours a full wage for long. I think ill know more after the Occupational health meeting
Thank you again
@MrsAli glad you’ve got an occupational health booked. I’m not sure what your job is but here are some of the adjustments I have been given:
- Regular breaks throughout day
- Reduced workload
- Software that will read documents & emails to me & type what I dictate
- Work from home where possible
- Meetings docs in advance of meeting so I have time to absorb them
- Equipment like larger computer screen, separste mouse, keyboard, printer etc
- Flexible working hours
- No travel for now
- Physical adaptations to office due to my mobility issues
- Reduced hours for 13 weeks
- Change of role
Make sure you tell occupational health what you’re struggling with, how it’s affecting you at work & out of work. In advance of my recent occy health I wrote everything down & made sure I told them. I struggle with concentration & attention span for example so told them.
I don’t know if any of that helps or even applies in your role but may give you some examples to work with.
Hope the appointment goes well.
Look after yourself. Your health is very important.
@Mrs5K thank you for your suggestions. I have been writing down as I think of things to ask or mention.
I worked as a customer service advisor, on the phone for 10hrs, 3 days on 3 off. I dont think i will be able to do the 10 hrs so maybe a different shift or possibly part time hours. Will see what Occupational Health recommend. I have to do whats best for me and my recovery. I do want to continue working because it gave me independence and I enjoyed it most of the time lol.
I hope the appointment goes well for you. I’m not surprised you’re struggling doing 10 hr shifts on the telephone. I find I can manage one phone call then need a break before the next one. Hopefully OH can recommend something that will help. Part time might be an option but as you say your health has to come first. X