Im now over 9 weeks since my stroke effecting thalamus and i know its still very early days. Yesterday i had a follow up with stroke nurse. Which was helpful and after suggestions on here ive been put on the local stroke community team waiting list, but as im not urgent he couldn’t say how long the wait is. He wasn’t sure they could help with my sensory issues but if its available, im not going to turn it down. After explaining how my hand feels so sore, tight, painful, and rubbing my palm over surfaces feels like rubbing over sandpaper, plus tingling left side of my face and numb toes, he said he couldnt begin to know how that must make me feel. Up to this week ive been coping quite well and felt upbeat that things were improving when out of nowhere i found feeling in the fingertip of middle finger had returned.
Which i feel is amazing progress and felt like sharing great news. The nurse said it was amazing too.
However today hasn’t been a good day, im not sure if its just down to the fact ive had 2 good days and just tired, but its really effecting my mood and how i look at things. When i told a close friend of my appointment and getting put on waiting list, she told me not to dwell on what happened and get on with my life. Its not easy when you are constantly reminded of things when i move my hand and touch something. Or when i do too much and fatigue hits. Id love for nothing more to be able to do so. I’ve tried to put her comments to back of my mind and say to myself that she has no experience of stroke survivors experience. Maybe some of it is my fault for not saying what its like, but i dont want to sound like im moaning about health all the time. To look at me i dont look like ive had a stroke. My husband understands as he is a stroke survivor himself (over 3 years now). Its just deflated me and made me think its time to keep things to myself in future, or whether the stroke has made me over react to a comment she probably meant nothing by.
Sorry for rambling on… as tomorrow is another day.
Thank you for your reply, much appreciated.
Im just hoping low mood is a blip, and can bounce back in few days but i will have another app with the stroke nurse in a few months. Ive also got a phone number if i have any questions. So that was all on positive side
Anne, I have some understanding of how you feel, though I know we each have our own path to tread. I didn’t go to a talk and meeting on Wed partly because I was more than tired, but if I’m honest didn’t want to field all the "you would never know you’ve had a stroke " brigade’s kind comments. I have on occasion used a stick for arthritis and don’t need it, but may resurrect it!!
Last week I was a bit low, but it does seem to have passed, though I hate this feeling grim if I do too much or get stressed.
I know what you mean about well meaning friends too, one in particular of mine, but she’s the same with everyone and all done with best of intentions.
I always say “allow yourself one day a week to feel sorry for for yourself, otherwise you’ll implode”
I can relate to the “you don’t look like you’ve had a stroke.” I want to say, “Crawl inside my brain!” I’ve had stretches of great days, but this past week has been tough! I’ve always been a high-functioning person, so it’s frustrating to feel “off” or “foggy headed.” And feelings of anxiety have begun to creep up.
I keep reminding myself that it’s not a sprint, so I have to take it one day at a time.
@Anne221 thanks for sharing your update. There are some positives in there &try & hang on to those.
It is possible that the way you are feeling is because you have fatigue. It is very earky days & we often forget to pace ourselves on the days we feel a bit better. Often fatigue hits a couple of days after the exertion.
In relation to your friends comments I am sure they meant it with the best of intentions. It is very difficult for those that haven’t been there to understand. I have explained to my friends & those I feel need to know how the invisible symptoms affect me. No one can see your tingling & pain and as a result can’t possibly understand but do try telling her. You aren’t moaning you are just offering tye facts abd i am sure if the boot was on the other foot you would want to support your friend with their feelings / pain.
We all have down days so try not to worry too much about it. If you find it us becoming a problem then please reach out to your GP.
Thanks Ann for your reply i think you are right about it being fatigue as today i feel in better mood and i actually slept longer last night. Yeah im learning that on good days i keep going when i should pace myself more.
I will try talking with my friend, i had made that decision this morning to do so when i next see her.
Pleased to hear you’re feeling brighter today. It’s difficult not to plow on when you’re having a better day but we should all try not to. I still haven’t maatered it after 3 years
Hope your talk with your fruend goes well. I am sure she’ll understand.
This is great news ; somebody once said to me “consider the alternative ; would you rather feel nothing?”. It took me 6 months (spending 1 hour of practice every day for a month) to feel a coin drop into my hand, and even then it was so feint a sensation that I had to repeat it to check it wasn’t my imagination.
It’s very hard to make others understand the overwhelming difficulties we face, but with time (and I mean time) things will improve. Be patient.
Thanks @pando id never thought of it that way.
Im used to being able to bounce back from illness, taking my time doing things isnt me at all, however Im now learning its going to take time to improve.
