So littel help and less understanding

Adam i understand!! I had a stroke in 2017 and maybe luckier than some, but now experiencing spasticity in form of numbness and increased stiffness - i guess thats called pain which is getting me down but family and friends dont understandmy fatigue and frustration andhow ifeel inside. Keep on believing things will improve👍

Hi Adam, 

We're all allowed to have these moments of feeling sorry for ourselves. Our lives have been changed and we need to adjust to our new selves and it;'s made harder when those who we think should be supportive aren't. I think the invisible disabilities/effects are so  hard for people to understand. 

In regards to the fatigue, and I know it sucks, all I can say is give it time. I'm five years on and whilst I manage my fatigue most of the time (I use the word manage very loosely) there are times when it hits when I least expect it. For example it wiped me out yesterday after attending an extra art lesson. I thought I'd maybe sleep for 30 minutes after it but I woke up over two hours later and then just lay on the couch unable to even make a cuppa. Unfortunately it meant I was unable to go and watch my daughter singing last night and those are the things I hate. I feel like I'm letting the family down.
In regards to the exercise and fatigue, have you spoken to someone about it? It may be that you need to back off the exercise a bit so taht you get a better balance of rehab and feeling functional. After an hour of pilates on Monday I would come home and sleepfor a couple of hours then not be able to do anything for the rest of teh day and soemtimes all of the following day. My way of 'managing' this was to knwo that I couldn't book in anything to do on those days plus I would take it very easy on a Sunday afternoon/night. Very slowly this improved to where I now do a 2 hour art lesson on a Tuesday but I am exhausted after that. But for me that fatigue is soemthing I am willing to put up with because of the joy I get from my art. It was suggested that I start doing another sessin of pilates but knowing how it impacted me I said no. I wanted some days were I felt more functional and by saying no to the pilates it means there is more of a chance taht I can go for a walk with my dog and husnband. I guess what I'm saying, in a very convuluted way, is to look at what you are doing and work out if you feel like it is benefitting you or not.
Remeber the Strokeline is available so taht you can talk to someone.
Keep posting

Toni

Hi Adam. I had a stroke in Sep 2018. I was lucky as the only after effect for me is fatigue. At first it used to really bother me and I would beat myself up until I did some research and found out that fatigue is very common amongst stroke survivors. Now I don't give a toss what people think when I say I'm feeling flat and I don't feel frustrated if I am unable to do all the things I did throughout the day pre-stroke.

One thing I found helpful is to realise that for me, mornings are my best times to do things and to plan my day and week accordingly. I agree with you that it is challenging when the batteries just run flat and need to be re-charged. 

Hi Adam,

It's great you have been completely honest in this place. It's the only way to go.

It is hard, so hard to listen to that sort of stuff. Turning away from conversation like that and towards a more compassionate way takes enormous effort.

Keep educating yourself on what will help you and showing up in your life - no matter what. With extra family dynamics to manage, take care of you.

Have you called Strokeline at all? 

Sue