Kick up the backside

Life after stroke Returning to work & Benefits
1

Hello. It's been a few months since I posted but needing a 'kick up the backside' to snap me out of my mood.  I had my stroke in July 2019, aged 40. Thankfully, I have no Lasting physical difficulties but the fatigue and sensory overload remain my nemesis.

Over the last 6 months I have learned my limits and learned some strategies for coping; mainly if I need to cry then cry or if I need to sleep then sleep. 

I have also learned to say no and to put me and my recovery first. It has meant losing friends but my true friends have remained which I am grateful for. 

I was adamant for a 'new year, new start' and no longer let my stroke define me but boy have I been knocked down!!! 

I started a very brief return to work just before Christmas (5 months to the day after my stroke) where I had 3 x 4 hour shifts. These went well but I was shattered at the end, which I expected. I also appreciated these were a false sense of reality as there was the festive cheer and catching up with everyone, sharing my story and having meetings about my return after Christmas. And boy what a return it has been. 

My work have been very supportive throughout and are doing their best to ensure I am supported in my return. I am continuing a phased return, building up slowly and have reduced from 5 days to 3 days.

However this week, I have found it a struggle. At the end of each 4 hour shift I am exhausted and sit at home for hours in silence and darkness and struggle to eat. But although I am so exhausted, I am finding it difficult to sleep which has a knock on effect for the next day. I am also feeling a little 'lost' in the workplace and struggling to know my place. I am sure this is normal for anyone who has been off work for a while but it has worried me. Then I had the mother of all meltdowns on Friday - 2 hours of sobbing and hysterics for no reason! My poor colleagues!! But on the plus side, I finished my 3 full shifts for the week. 

I am feeling apprehensive that this is all a sign that I am not ready to be back at work but then again I am maybe being harsh on myself and these anxieties are perhaps normal. So I am going to dust myself off, give myself the proverbial kick up the backside, smile and start again next week!!

sorry for the rant but it is good to share with people who understand. 

take care everyone. Michelle

2

Dear Michelle

Your rant should be on the SA site. You sum up stroke recovery very well indeed.

Would you like to consider that you are not defined by stroke, but that you are a new person. I dont think many of us ever go back to how we were. After all, whatever the damage done by an infarct, part is irreversible. Have a leg amputated and you can get a decent life back given time. But you cant do what you did before. So a damaged brain has to be comparable, indeed worse than an amputation.

Based on reading the forum posts for several years, I have concluded that returning to work is likely to be a bad idea until 9 months or more. Perhaps those that have gone back earlier and succeeded wont be posting on here. But I do read about great difficulty such as yours.

I have found that if I am sleepy tired, eg havent had enough sleep, then the SF clamps down and my slight physical disability heightens and the emotionality starts up. 

I work so hard ensuring I get the right night time sleep and then take the necessary breaks during the day. I am then tolerably OK. I am now very good at daily meditation (or relaxation whatever you like to call it) and I judge myself on whether my mind has completely cleared of all daily things /stress.

I can only manage a 5 hours a month voluntary admin job plus making tea and clearing tables at local gatherings. Somewhat different to my working life as an FCA. I dont need any earnings thank goodness, and these tiny tasks make me feel valued.

Your problem with eating and sleeping screams that you are doing too much. I call it "overdo". 

In essence we need rest and sleep. 

You have to ditch family and friends who pressure you. No matter how dramatic this might seem. In my first year, statistics suggested that 65% of SS split from their partners. Ouch. Only another SS grasps what you go through, so others are always going to be difficult.

I am also impressed that you use smiling as a recovery weapon. So true.

Do let us know how you get on. You are a breath of success.

Colin

 

3

Hi Michelle, you have done well to return to work so quickly after stroke.  You don't say what your job involves, but trying to return to work is an incredibly challenging experience -  physically, cognitively, and the sensory effects of the demands of employment can be over-whelming.  So give yourself time, and recognise that your 'meltdown' is your brain's way of saying "Whoa, this is too much".  I often observe my husband when I think he is doing too much, and I notice physical/physiological signs of over-load before he does!  

Take good care, and make sure you get plenty of rest, then some more rest!!  Your positive approach is good, but don't kick yourself toooooo hard!!

xxx

 

 

4

Aww Michelle it sounds as if you have been through so much ! I think the fatigue is crazy, I went out today to a restaurant for food first time since my stroke 5 weeks ago and I struggled with all the noise that was going on and concentrating on what my husband was saying, is this something you have noticed ? I am getting headaches and like a numbness on the right side of my head and dizzy spells also ?. 
I hope as time goes on work gets easier for you but be kind to yourself x

5

Hello. Thank you for taking to time to read my post and also replying. It has been a tough few months but thankfully more good days than bad!!  How are things going with yourself?  You will find this forum really helpful!  I promise it all does get easier!!!

Aahh! The dreaded sensory processing. It is a killer! I have completely struggled with it but thankfully it is getting better. Some days it is not an issue. I find the more fatigued I am then the more sensitive I am to noise. I am unable to go to a coffee shop/ restaurant and still be able to 'function' with more than 2 other people. I have limited it down to ensure successful. I have become a pro at scanning an environment and choosing a seat wisely - look for speakers for music, away from prep areas, not having my back to other people etc. I have also picked my 5 places I know I can survive in!  I find that most places are accommodating if you explain you have sensory difficulties and will seat you in a quieter area. 

I have started to go to noisier places on my own, even just for a coffee, so I can start to  build up my tolerances without the added pressure of having to converse with others. It has totally helped!

also, make sure where possible you look at menus online and have an idea of what you wants. This includes other added selections you may be asked eg chips or potatoes, any sauce etc. As this reduces the amount of thinking you need to do and helps with stress levels.

i also invested in a really good set of noise cancelling headphones and use these for walking through town etc to minimise added stress! 

I am sure your husband will understand but make sure you explain to him what you are experiencing so he has a sense of it. My husband has been great and can tell by my vacantness when I am struggling so knows not to expect great conversation. I have seen us sitting having lunch for 45 mins without conversation. He has even offered to leave during meals when he know I am struggling.

I hope this helps!

i wish you well on your continued recovery. Be kind to yourself!  M

6

Hello. Thank you for taking the time to read my post and also replying. 
 

I am a lecturer at university so is a pretty brain-taxing job despite the effects of stroke. I am slowly resuming my teaching commitments next week and the thought of standing up in front of 200 students is daunting but I will see how it goes. 
 

Yiur husband sounds lucky to have somebody looking out for him and noticing the signs of fatigue. I know he will appreciate this greatly! My husband has been my absolute rock and like you, notices when the fatigue is beginning or when a meltdown is about to start and will subtly (but I'm clued you now!) divert my attention or make a cup of tea or suggest I have a nap which will curb things. Unfortunately, he works away from home so I am on my own most of the time so don't have him to stop me doing too much. 
 

I have spent the whole weekend sleeping which will hopefully stand me in good stead for the week ahead. 
 

thanks again

 

michelle

7

Hello Colin

 

Thank you very much for your reply and kind words. I have considered writing a piece for SA but not sure. 

 

I agree, I will not be the same person I was, mainly due to the brain changes but also the soul searching I have done. I have gone through my grieving process for the person I was and am enjoying finding out who the new me is. And she is as awesome as the old me but with less tolerance for small talk and negativity!

 

I have got used to the ‘you don’t look like you’ve had a stroke’ and your look fine to me’ but remind people that just because I have nothing physical to see eg broken leg, I have suffered a brain trauma which will leave lasting damage. That is an eye opener for them and for me also to be in a place now where I can verbalise my difficulties and frustrations. 

 

With regards to your timescale for a return to work, when I was in my early stages of recovery, 9 months was in my head (not sure why) but the medical team have been inadvertently giving me the message that I should be back sooner. The doc at the hospital asked me after 2 weeks if I was back at work!! And my gp asked me if I was sure I still needed to be off when I went for an extension after 3 months. I’m not 100% convinced I’m truly ready but am giving it a go to see and thankfully my work are doing a lot and supporting well to try and ensure it is as successful as possible. So I will see. The stubbornness in me can sometimes take over!!

 

You are right - I have learnt the difference between being tired and fatigued! But also mindful that if I don’t keep On Top of my tiredness then this leads to the fatigue and affects my speech, thought processes and brings on the meltdowns!! I now need to learn how this all fits into my working life and then indeed if I am ready for a working life. But it’s still early days. 

 

Yes smiling through it helps but don’t get me wrong, I have my moments of tantrums too! They are not so delightful. 

 

Well onwards and upwards and the start of a new positive week. I shall indeed keep you posted. 

Thanks again

michelle

8

Hi Michelle, I am a (recently retired) special needs teacher, so I know the challenge of being mentally alert!!!  To be honest your role is exceptionally demanding; you are operating at a high level and really need to be on your game!  This will be very demanding for your injured brain - the cognitive reserves will be quickly depleted.  This was a real struggle for my husband trying to run his own company - the mental 'dullness' he experienced really took its toll, so be aware of this when planning your lectures.  From a physical perspective, are you able to sit to deliver part of your lecture?  Just standing up can be very tiring, and your brain will be trying to cope with too many demands simultaneously.  I don't want to put barriers in your way, but just things to be considered, and if you are able to make any adjustments it will make the process less strenuous.  

I'm sure you will find ways to manage your fatigue, and as you say, you are looking out for the clues now, so that is a step in the right direction.  

Take good care, glad you managed a restful w/end!  Well done!  ?

Have a good week ?

9

Thank you ! Sometimes at the moment I seem to be really struggling, maybe because it's early day and don't know what is supposed to be normal now. I really appreciate your help and advice xxx

10

Hello a fellow teacher! I lecture in teacher training which I started only 9 months before my stroke and prior to that I was a headteacher in a primary school. I count my blessings I am not still in schools - there is no way I would be able!!!!!

my work are being great and for the next couple of months I will be in a team teaching situation and can do as much or as little as I am able to do to try and support my stamina and build up my skills again. As you say even the physical demand of standing for an hour will be too much so I need to slowly build that up. 
thanks again for your advice. Much appreciated! 
 

michelle

11

Dear Michelle

What a brilliant writer you are.

My yoga teacher explained that smiling causes a good automatic response to our brains. It doesnt need to be a genuine smile. False, forced or fake will all work.

Its so nice to read that you can tell the difference between sleepy tired and stroke fatigued. I began to think it was just me.

If your employer will allow a phased return then that has to be a good thing. I do grasp that I am ridiculously lucky to have more money than I need and that so many younger survivors need the weekly income. However, I couldnt do much in an earning capacity because my memory is all over the place. And that assumes I dont fall down physically nor disintegrate in tears. The tears thing is very hard for us males.

 

I admit that I often doubt my own suggestions. Maybe I should have pushed harder at some stage. I cant go back and try again. I am surprised at how many SS say they have done a million hours at the gym and therefor feel recovered. I got very good early physical recovery. Day one I was 90% paralysed but was walking a mile within a few weeks. But I cant shake off the cognitive stuff. I quite literally collapse with the fatigue if I do a few hours of full on activity. I guess we are all different, as no two strokes can possibly be the same.

In the summer I wrote an article for a national cat magazine and my ego was boosted when they printed the article. So by all means write for the SA. Or you could write, save your work, and send it later if you feel inclined.

You are inspirational and I am sure I am not the only one who gets a boost from your words.

Best wishes

Colin

 

 

 

12

Honestly you will get there. As cliche as it sounds you have to take it hour by hour in the early stages and build up from there! Don't plan to do too much in a day - one thing - and build in plenty of time to sleep because you will need it. 
 

what I learned is there is no such thing as 'normal'. Whatever you are experiencing or feeling is your normal. 
 

I promise it all gets easier!!!

M

13

It's nice to know I'm not alone. Many thanks 

14

You are absolutely not alone! We have all been there so please reach out when you need to!!!

15

So many positive responses to your post. I love reading them all as it only seems like fellow stroke sufferers seem to really understand stroke fatigue and the invisible impact it has on us. I just want to add that about 1 year after my stroke the fatigue seemed to suddenly retreat hurray! I had started to think it was part of the new me for ever. At times of stress and when I try to run before I can walk (as I am so gleeful that I can get my life back) it does rear its head slightly but nothing like it did. Its a balancing game over giving yourself challenges and listening to when your brain says enough is enough. I am only now at 1 year 3 mth after mine thinking of doing a bit of voluntary work, I could not have coped with my p/t busy admin job so dont set your sights to high re work sometimes aiming too high sets us back. I like many women have spent my life thinking of doing for others primarily, yet I have had the most self centered chapter of my life ever, my husband deserves a medal for the support he has been to me. I walk 2 or 3 times each day on my own in my hills in blissful solitude not even taking my dogs, he takes them, I go to Pilates in the middle of the day with relaxing music and for many months much to my annoyance ( I do not like to waste the day away!)I took daytime timeouts/naps of 10 mins to 1 hour all unheard of in my previous life. This I believe has helped my recovery, work I know for me would have been detrimental but we are all different and I do miss work. Best wishes youll get there, better times ahead for sure, the body is amazing given time and TLC. 

 

16

I have just been reading your story. I think your marvellous to go back to work and remain determined despite feeling awful.

My mum had a stroke 4 months ago and she is so up in the air with anxiety and fatigue. When the fatigue comes she almost panics as she says it makes her feel terrible. I think she is worried it could be something else and not fatigued, however she has been to the doctors a lot and all is fine. Today she didnt know what to do with herself and it was horrible to see and I am unsure what I can do to help. We went for a small walk today and she enjoyed the fresh air but it was just too much for her. I feel like I am on this rollercoaster with her but not quite sure I am any help. 

Any advice would be great.

 

17

I hope that my disabilities don't stop me from doing what I enjoy in my life!

18

It’s Four months since my stroke and I feel very near my old self. I am getting out and about more but the fatigue is still very apparent and slows me down. I’m learning to take life more slowly than before. I’m hoping to get back into my hobby of dressmaking. At the moment I’m not energised enough but need to take the plunge. I want to walk each day to build stamina especially when the weather improves. I know I’ve made a good recovery so need to be patient. I know I’ve changed in lots of small ways as well.

19

I think you have done very well to go back to work after 5 months. You probably needed to melt down to let out all the frustrations and sadness. I keep being told to be patient with myself and also to be kind to yourself. Take care Ruthx

20

I had a stroke 4 months ago too. Just be patient with your mum and just being there is enough. Walking is supposed to be the best thing for increasing stamina so keep doing it. Your mum will get there. When I’m tired I go to lie down. Otherwise I try to save energy or sit down when I need to.