Exhausted but feel I have to fight!

Happy new year everyone ? I am now 8 weeks on since my stroke. I’m a strong willed and determined woman. I have so many questions in my head as to why me. I find myself looking at my reflection wondering where I have gone... I know I look the same but I’m not and I’m totally fed up of everyone telling me how well I look and how lucky I am because I don’t feel lucky! Don’t get me wrong I’m thankful to be alive and I’m thankful I’m with my children but I’m so scared. I see the consultant in 2 weeks and I’m hoping he will give me the go ahead to return to work. I have to as I will lose my home and just cannot survive on SSP this is all I’m entitled too. I spoke to the mortgage company but they were little help I have no savings and I’ve exhausted what little I did have. I worked so hard before my stroke to get a promotion at work in a job I love and I’m scared the longer I’m off that I will forget or be at risk of losing it. I need to be someone and I can’t let what has happened to ruin my life. My children need me to be ok as they have only me. I’ve pushed  from the second day, pushing to stand, pushing to walk pushing to drive, pushing to keep going not resting. I just have to keep going and keep pushing on because I fear if I don’t I will crumble..... I have spent my life taking care of everyone around me. I’m not selfish in anyway and would and always have done anything for anyone. Since my stroke I feel deserted I’m surrounded by a whole loaf of ppl engrossed in their own lives and why not they have no clue what it’s like.  Because I can drive and move relatively well they just don’t understand. I get odd pains still headaches and numbness in my left hand and a when I’m tired  I had not had to take meds before my stroke so I find it hard to have to do this now. I am thankful I have regained so much I just feel like I’ve changed forbever and miss me. Sometimes I get so tired my words are mixed up or I almost stutter. Reading everyone’s posts and reply’s is so comforting so thank you all. I’m not after pity I guess just understanding. I’m just worried being defiant not to let it beat me and the constant pushing could harm me. I just wish I had support. 

hello, just reading your message, I had 2 strokes in 2003 and most of what you has said I think happens to all of us.  I lost my business and unable to drive,the first thing to do is to push but not to much as the only person you are hurting is yourself trying to find that level ground is hard work, I still find it hard work sometimes just getting myself ready in the mornings, I sit down until I feel ready to carry on.  Your stroke dr should be able to advise you with any benefits there is pip which I have been on since but this the change over it has stopped so thats going through appeal.  There is also cizens advice depending on your head take someone with you, I have to I am unable to understand what is be said or remember, it goes in but gets lost somewhere. Talk to your gp if they are understanding enough. Easier said than done I know but try to relax and not beat yourself up.  Good luck  Jenny 

Hi Sam15. Everything you say, I said to myself in August 2017 when I had my stroke.  Why me? It's only recently that I can actually look at photos of me pre-stroke without bursting into tears because that woman I see is no longer there and I am now a different me.  We all go through the stages of anger, bitterness, disbelief, self-pity, jealousy - the list goes on and on.  In time, although this sounds impossible at the moment, you will learn to like the new you.  It took me well over a year to get to this stage.  I can't imagine how difficult it would be with children to look after or to be still working.  I was retired when I had my stroke so I have the utmost of respect for those who can find the stamina to do both of these things. 

Pushing yourself is one thing.  Pushing yourself too hard will only set your recovery back.  Your brain needs rest and calm in order to re-wire itself.  Amazingly, it does.  How it does, I have no idea but you will see in the days ahead!  If you push, your brain's automatic reaction is to shut you down.  Even now, I still need to have a good 30mins complete bed rest with no interruptions in order to get through the day.  

The Stroke Association may be able to help you with people to contact regarding finances as well as Citizens Advice.  Your bank manager may also be a good place to have a chat so they understand your situation and work out a plan to help out till you are back at work.  I know you need to be there for your kids but you need to be there for you too.  Easy to forget when you are busy caring for others I know.  Being strong and determined is a good start to aid your recovery but be kind to yourself along the process.  Take care x

Dear Sam

What a strong person you must be. The stroke that bit me was not huge, but no way could I do what you are doing. Well done, you have my admiration.

You will indeed have to find that new person hiding behind the old facade.

You need some help, right now. Try the CAB and perhaps your local church. Ask the staff at your GPs. Ask your employers. If HR dont have a stroke specialist, ask them to get someone in.

If someone can take the weight of finding what benefits you can be given then you can spend more time letting your poor damaged brain sort itself out. If someone offers help with your children then take it. They need you to recover, not tomorrow but a few years along the line. As mentioned by others on here, your brain needs to "re wire". Your brain may repair some of the damage around the edges, but not all of it. It will work around the dead bits. This can go on for two years, although mostly it will be the first few months. The medical term is "neuro plasticity".

Your brain needs rest and lots of it. It also needs hydration, so do drink extra water. Your brain cant tell you it needs water because the brain does not feel pain.

Friends and family do indeed run for the hills and yes it is a horrible feeling of desertion. At eight weeks, when the medical team had completed their home visits, I had this overwhelming feeling that I had been put in a rowing boat and left in the south Pacific ocean. Things do improve but it is slow slow slow. Only another SS understands. 

Do ask the consultant about pushing too hard. Describe to him/her exactly what you have described here.

I have read thousands of posts from SS. Too often, an early return to work has caused problems. In my opinion nine months is about the fastest to get back to work. Maybe you will be the exception and do it in three, I do hope so. Every stroke is different. 

On a more immediate level, perhaps you could ensure you get proper sleep. For me its 7.5hrs and if I dont get that then the problems expand. It doesnt clear the stroke fatigue, but it does give you a chance.

My heart goes out to you and your children


Hi Sam, I know exactly how you feel, I had my stroke 3 months ago and I still look in the mirror and ask whose are those eyes, they are not mine, I still grieve for me, ,it is hard and even harder for you, with no support , I admire you and hope you get the help you deserve. Lyn x

Hi All, 

I have been reading the posts with interest. Like a lot of people I had a stroke last March.  I can hardly believe that it's nearly a year ago . I have struggled and continue to struggle with the reduced mobility I now have etc.  I push myself to achieve as much as I can.  Especially as my husband is disabled and can't help me.  I have found listening to music while doing boring jobs helps like ironing.  Yuck! ☹

I have found " The Climb" by Joe McElderry seems to sum up my fight and worth a listen.  I'm sure there's other versions out there.

Some times hum it in my head when I'm climbing the stairs. Remembering it doesn't matter how long it takes me to get there.

Don't give up or accept the first answer to your questions. As the others have said keep asking . Like you I didn't think I would be entitled to any additional money after I'd been paid all my SSP at full rate. But I discovered I was eligible for about £400 based on my national insurance contributions . ? 

Here's hoping 2019 is better for us all.