Please don't say 'It just takes time'

Hello Rose,

Stroke fatigue is not something other people can see therefore some people do not understand  exactly how you are feeling. It is not just feeling tired but can feel like an overwhelming feeling of utter tiredness from head to toe. Only you know how your body feels when it is really fatigued. I had my strokes 18 months ago and still get really tired but as I live alone can just go lie down and rest ready for the day ahead. If you do something energetic one day take it easier the next.

I hope you find this website useful and it helps with any issues you have. It has certainly helped me.I hope you soon feel less tired and knackered!

Sandie

What an uplifting post John.

I am sure that its the positive attitude that gives the best recovery.

I was bitten in late 2015 and I was 68. In the past few weeks I have noticed an improvement in my speech. I havent been as bad as you, speech wise, but my point is that recovery goes on a long long time.

Well done.

Colin

Welcome to the forum Rose.

Thats a good idea to get hubby to read some of these posts. There is also a stroke association "Stroke information pack" which contains leaflets. They might well help both yourself and your friends/relatives.

You are spot on that you are not fine. You have a disability in the form of your brain being damaged. Yes you probably look very well on the outside, but no one can see the inside of your brain.

I was advised that, a stroke had damaged an area of my brain. Then our amazing brain will repair some of the damage but not all of it. Where it cant repair, then it will work around the dead bits, finding new pathways. 

I was also diagnosed as "post stroke tiredness" Thats a bit like classifying pnemonia as a tickly cough. I call it stroke fatigue. or SF for short. I think the term stroke fatigue is now referred to freely.

Your brain needs extra water whilst it is rewiring (rewiring has a medical term of neuroplasticity). Your brain does not feel pain so it doesnt tell you it is thirsty. It nicks the water from other parts of your body. So extra water drinking is highly desirable.

I got brilliant advice off this forum, when it was in a different and much easier to use format. So other survivors helped me and I am happy to help others.

I havent come across any way of recovering from stroke fatigue, but it does ease as the months go by. I have identified that our sleep is in at least two formats. Sleepy sleep, which is normal and average, then stroke sleep which is when you are put in to repair mode. I identify that I wont get any relief from SF unless I get a full quota of sleepy sleep. And that overdoing on a Monday will cause SF on tuesday and wednesday. 

Best wishes

Colin

 

Fantastic post John. Your determination has done you proud. My experiences were similar to yours, but your journey has been tougher than mine. So carry on smelling the roses and may you do so for a long time yet.

Hi Fiona 

just wanted to chat as I feel just the same as you . I still am so anxious even though on tablets for it. My small talk has gone I just seem to bring every conversation back to my problems. 

I need to get a grip and move on .

My biggest worry is that I look after my grandchildren 2 afternoons a week and I am so scared that something will happen while I look after them .

my family and friends are brilliant but just don’t understand my anxiety they think it’s all over and done with as they witness my tia and to them it was nothing as I just felt a strange weakness rush down my arm and leg for a couple of seconds so they don’t realise what it could lead to .

I am not me at all and miss my carefree life as I know we all do .

i hope we all get our confidence back soon . I know this takes time but it’s nearly 4 months now and I seem to be struggling more and more so know how you feel .

best wishes 

mabel

Hi Mabel,  I think anyone would completely understand your feelings.  It's not just a case of flicking a switch and hey presto everything is ticketty-boo -  if only that were the case!!  It's lovely that you can look after your grandchildren, but it's a very scary thought that something could happen while you're with them.  Are the children of an age where they could summon help if you needed it?  If that is the case, you could role-play what to do if there was a problem.  Not in a way that would worry the children but just a make-believe scenario, which might give them the skills to dial 999 if necessary.  You hear of stories where quite small children have called for help for a parent in distress, so if they're about 3 or older that might be a possiblity.  If you know they could get help, maybe it would ease your anxiety?  

Friends and family will need to get on board with the fact that recovery takes a long time, and there's not a predictable pattern.  Everyone is different, it's not like a fractured arm!  Hopefully because you suffered a TIA it might be a quicker recovery than a full stroke - however, a friend of mine who had a TIA at 41, still took about 6 months to get over the initial event, and even now (2years) he still has a few issues, but he's returned to work as a plumber, and property services technician, which is a very physical job, so there's always hope.  

Be kind to yourself now to give yourself the best recovery in the future - try reading "A letter from your brain", and maybe show this to friends and family to help their understanding.

Take good care, Nic xx

Hi  Nick

thank you for your thoughtful reply, yes the boys are 2 and 5 so hopefully will be able to sort something, still worrying if I’m driving them anyway but as people say it could happen to anyone at anytime. Trying to relax about it all . Glad you friend has recovered well . I wish i could stop the panic attacks but I’m sure plenty of us have them . Take care Mabel 

Dear MAbel

Probably you have heard all this before, but  i have tried many things with varying degrees of success. Relax sessions are good. This can be taichi/meditation/hynotherapy/yoga/acupuncture and probably lots more. Mine is relax and renew group sessions. It helps me a lot.

Sleep is important. I love my "tinnitus relaxer" which is a battery powered noise machine that gives white noise overlaid with waves breaking. It works for me. It also has bird song, rain,stream etc. I didnt think this would work but it does. 

I get fatigue big time and the same machine helps me relax during the day.

I also had counselling which was so very helpful.

You are doing just fine. Be proud of what you can do.

best wishes

Colin

 

 

Hi Colin 

thank you for your ideas , I am doing therapy and trying to keep calm .

it just seems to be taking me along time to accept what has happened and move on . It’s all I can think about but hopefully that will change soon .

take care

mabel

Hi Mabel

I also feel that I've taken a backward step. Physically my motor function, balance etc is much improved but my memory, concentration & comprehension I can't trust. I feel guilty at not being able to do what I used to and when I try (pretend it didn't happen) I end up frustrated as I can't finish whatever I'm doing & am totally exhausted.

I also have to help with my grandkids & I'm worried. My daughter is in hospital & I can't not help but it's taking a big toll not just on the fatigue but on my confidence.

Thank you for replying, this forum has been a big help as without it I've no-one to speak to. My family think as I'm physically less wobbly that I'm better & medics just hurry me out the door! I'm also constantly anxious, terrified really that another stroke might happen & that's it. I just want to know why me & how to prevent it but sadly no answers yet.

Thanks again & lets hope we both regain strength & confidence soon.

 

Hi Moria,

just wondering how you are feeling now ,has your fear of another stroke started to wean off a little.

i hope your daughter is recovering now ,it’s hard not being able to help more with grandchildren I know .

i feel guilty that I am not helping and interacting with them like I used to but can’t seem to get back to me .

have you had any news on the reason for your Stoke , I have no idea what caused my tia and that makes is more difficult to cope with as is hard to know what to change.

we miss our old life don’t we .

must keeping smiling.take care .

Hi Mabel,

Thank you so much for replying to me, I'm sorry I've taken so long to reply. At times I think I'll not reply to the forum as if I'm feeling down I don't want to drag others down too & then I feel guilty as really I'm lucky to be physically not that bad even if the cognitive stuff is not right.

Anyway, my daughter after 21 days in hospital is home & beginning to recover. My husband lived at her house looking after the children & her brothers were big helps. Although I only was chief washer woman & organiser (funny when my short term memory is rubbish) it took its toll. My tilting to the left increased & the stroke fatigue increased dramatically. I think it set me back by a month.

However it's taken a couple of weeks of saying 'No' (very hard) & I think I'm now back where I was before the family crisis.

Whilst she was in hospital I had my first Stroke Consultant appointment. I had not been assessed when the stroke first happened & only now seem to be properly in the system. They discovered I have Afib (irregular heartbeat) which is the likely cause of the stroke. I'm glad to have a diagnosis but that brings its own problems. I'm on blood thinners which I was told have a risk of bleeds - stupidly I thought this meant if I was in an accident or cut myself - not that they can in themselves cause a bleed. It seems there is no end to things to cause anxiety!

However from the appointment I now have a lady from the stroke team in Inverness travelling to see me at home (2-3hours north) on Monday. I had a good chat with her & she has me on OT waiting list & I'm hoping she can give me ways forward in the hope of returning to work & learning to accept the new me.

Thank you again for replying and I hope you are doing well. 

Take care, Fiona

 

 

 

Dear Fiona

This is a group of stroke survivors. Only we understand what its like, so please if you want to write and just have a moan then do so. We really do understand. Its lovely that you include the comment that you are down and dont want to drag others. But we are with you Fiona. We are in the same boat.

I think blood thinners do cause you to bleed  more, so if you cut yourself it takes ages to stop the bleeding. I think the reason we take the thinners is to reduce clotting inside our bodies.

Can I pick up on "ONLY chief washer woman and organizer". This is the most important job in the household and so you are doing vital tasks. Please dont put yourself down. And believe me, I am an original male CP. I believe its best to split duties and most women are better at the home care tasks. What can be more important than bringing up the babies and keeping house.

It seems the stroke that got me has introduced pulse rate problems. However, after two to three years those pulse problems have eased and continue to improve over the months. Every stroke is different but we do share many common issues.

Do smile.

And be positive

Best wishes

Colin

Thank you Colin, the replies I've received and just reading others posts has helped. It's trying to keep perspective & be positive. I do know that I have improved just frustrated at the slowness. I find that being outside helps & now that the lighter days are here I can get out more (even if it's still freezing - live in far North of Scotland); my sensory problems are worse indoors in artificial light. If nothing else my garden is tidier than it ever was as I potter about in it! Thank you again, Fiona

 

 

 

Hi Fiona ,

Thank you for your reply , I know it’s hard to keep positive and feel we are bringing others down .

i think you are doing a brilliant job keeping everyone organised but it’s very tiring and stressful . Good news your daughter is home now .

i take aspirin to thin my blood and as I am also taking anti anxiety tablet theses too can thin blood and make you bleed which scares me but I need them at the moment hopefully not for much longer .

My lovely mother in law was on blood thinners for many years as she too had a irregular heartbeat and was fine so try not to worry to much .

how did you find out this what you had as my doctor does not think my heart racing and the coughing is a problem but I would like to know what is causing it.

are you any closer to accepting what has happened as I am still having trouble with it but am trying to move on.

can I ask if you have changed your diet as  I have always eaten healthy but have now cut down and am too thin now and just wondering if I have gone over the top .

Take care , Mabel

 

 

How did you get on today , hopefully you had some positive help from stroke team .

 

Hi Mabel

Thanks again for getting back in touch with me; it's lovely to know that others understand how we are feeling & what we are going through. Yes I do find it hard to accept what happened (some days worse than others); then I feel guilty as I'm not really physically impaired it's mainly hidden issues & I should be thankful it's not much worse & yes I didn't die!

The lady from the Stroke team who visited me today was lovely & clarified a lot of things for me. Seemingly I'm not a usual candidate for a Stroke but due to unusual arteries in my neck (born that way) & now discovered the irregular heartbeat (Afib), ECG was how they found it. Only treatment is the blood thinners.

I too normally eat healthily anyway but since the stroke I have no real appetite or enjoyment in food. However I make sure I eat 3 meals a day & am cutting back on anything high in cholesterol (I'm also on statins). My meals have become more a necessary medicine rather than enjoyable. I begin the day with a bowl of porridge & berries which fills me up. I've always had a sweet tooth & have really cut down on sweets & chocolate but I've not done a complete ban - a step too far so maybe the enjoyment in a meal will return. I hope so. I think I've lost a bit of weight but nothing drastic. Perhaps you should check with your GP as less weight could give you less energy? Stroke fatigue is a big issue with me but talking with the stroke lady today has reassured me that Im doing ok & that 5 months is still early days.

I'm on a waiting list for Occupational Therapy to address the cognitive issues which are big issues for me but overall the visit today has been helpful & I feel more positive (though exhausted after concentrating for the meeting).

I hope your anxiety deminishes & that you are doing ok. Thanks again for replying it does mean a lot to know that others understand & care enough to reply!

Take care, Fiona

Hi again, glad to hear you are feeling more positive after your meeting.

we seem to  eat very much alike as I have just the same for breakfast. Will have to allow myself a few treats I think  .

hopefully we will gain our confidence back soon . 

Take care,  Mabel 

Hi ? Fiona,  I've just read your post though I see its 2 months old,  I wonder how you're doing?  Like another person on here said..  It was like I had written your post  myself!  I had a TIA about 8 weeks ago,  shocked isn't the word!  I find though,  now,  I'm having such panic attacks,  I know this isn't "me".. I also know I have to keep trying to do things or go out,  it would be so easy not to go out the door , I posted a while back under the heading of "anxiety and panic attacks".I really don't want to ask doc for more tablets,  I'm so afraid of side effects,  I'm already having lots of gastric problems with the Clopidogrel and statin .. Like you I am thankful for online shopping,  the big supermarket near me fills me with dread,  let alone going into a town or city,  crowds worry me,  also , don't know about you,  but even find myself sometimes hoping I don't bump into people I know,  its wearing either pretending you're ok, or trying to make an excuse like" can't stop, I need to get back (for any reason I can think of quickly) so I don't have to converse too much,  this again, isn't like "me", I'm usually (before stroke) an upbeat sociable person!  Mornings I still find difficult,  just getting dressed to face the day,  I was looking for a part time job before the stroke,  I also had a knee replacement few years ago which didn't go well,  so I'm on morphine patches for pain,  another reason I don't want to add any more pills!  Lol ..    But at this time, its the anxiety and panicky feeling that's a bugger. ..my doc say  its a very common feeling,  and fear,  but most people do get better in time. But yes , it is constantly in my thoughts daily. 

Hope things are improving for you love , take care and thank you for sharing, x x

Hi Tallulah, I'm sorry for the delay in replying. I'm so sorry that you are going through this - the anxiety alone can be disabling let alone all the physical & cognitive issues we need to contend with. I don't know if it'll help but I find that sometimes speaking to people when they ask after you does help but sometimes I find I just can't be bothered to go through the whole stroke story yet again. I don't want to be defined as that ' stroke wifie' but it seems that everything is conspiring to make me just that when I'm struggling to find my new identity. I think we just need to do what makes us feel better at that particular time and day & not to worry so much about what others think. Maybe we both should ask our GPs for other methods to help with the anxiety other than tablets. I wish you all the very best & lets hope we continue to make progress.

Hi ? love , thanks for your message,  its taken me ages to be in the frame to reply, or look on the site,  I know you understand,  like all of us on here,  we are all saying similar things,  which feels supportive in itself don't you think!  How are you doing?  Day by day?  The most regular thing i find myself saying is " this isn't me".. Do you think we just adapt?  Like most people have to I expect,  it really does feel life changing!  

Im getting a bit better conference wise,  although must admit its quite a struggle to motivate myself sometimes,   I don't sleep very well,  but then I've always been more of a night  person,  I'm rubbish in the mornings,  lol ?,

I miss Jeff,  my husband so much,  he passed away last March 2018, we were married for 30 years,  in the last ten he had had two heart attacks and a stroke bless him,  his stroke affected him mentally more than physically,  though he was disabled with ankylosing spondilitis,  which meant his spine was crumbling like chalk,  so,  he had a lot to put up with,  but didn't complain, he was a very content man.  I cared for him more for last 4 years , so was used to being the "well" one!  Lol .. I know he would have been a great support to me,  I have 2 sons,  30 and 37, one lives 20 miles away,  the other a couple of hundred , in Liverpool,  both married. Have you got family  around you? 

Well,  I'm off to bed , bliss!   Please stay in touch now and then if you want to,  x x my doc has put me on Bisoprolol, apparently it does two things. keeps blood pressure stable and helps anxiety,  haven't been on them long,  so time will tell!   I had to go on a 40 minute bus journey few days ago,  was trying not to get worked up about it,  where as before it never entered my head! I just put music on my phone with  earphones,  and concentrated on the scenery passing by,  :) but I did it!  Yeah!   

Let me know how you are doing,  

Warm wishes hun,  

Caroline x