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Fatigue Crash Barrier


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Hi,

Almost 18 months into my recovery and I felt things were really starting to slot into place. I am now working 2 days a week, driving on a regular basis, spending time with my family and generally feeling much more confident about life post SAH. I was actually starting to enjoy life in the slow lane.

Then..................the crash came again and oh boy it seems to have hit me harder than any other time before. I recognise I need to rest, take time out to recover and scale things back again but it is such a bitter pill to swallow whenever this happens.

My head is like mush, can't think clearly, feeling very weak and just want to crash out in bed all day long.

On the positive side I haven't resorted to floods of tears this time (though I am getting close today, 3 days into the crash). I am reasonably confident that it is just a result of the cumulative effect of my becoming increasingly involved in mainstream life, albeit on a much smaller scale.

Not too sure why I am posting, other than to reach out to others who will understand how I am feeling.

Oh well, what's the saying - Rome wasn't built in a day??

Note to self: Hang on in there girl, things will improve with time and patience......patience was never one of my stronger points!

Keep well,

Wem

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Wem,

I would say you are doing great! "Enjoying life in the slow lane" love that!

That pacing thing …….hum wonder if any Dr. has had to pace except our Vanessa?? I am so careful to not over do it by going places or doing too much "fun" stuff because I need to save my energy for work. I think that is where therapy comes into play. Seems a bit unfair to monitor your fun?

I have crashed this week as well and thought I was being so careful. It is a very bitter pill but you know I think I am getting better at swallowing it. For me I had a challenging Sunday at work where I had to buck up and be ZEN to do a few cases that I would have rather ran away screaming from. I felt so good for facing the dread I had built up in my mind but come Monday I was trashed by 10 am. I felt so good about accomplishing what I did on Sunday so I feel it is unfair that it ended up draining me.

All I can say is it does get better and I am amazed at going on 2 years I still am improving in areas I thought I could not improve it. You seem to have a handle on the big one of pacing. I keep going to my affirmations of "riding the waves"- "adjusting our sails" etc....trying to not dwell on the down times. It would be nice if the down time was only a day wouldn’t it??

Chin up darling you are getting there! Maryb

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Aww Wem, it's so frustrating when you are sure you've got it figured out and then the fatigue slams itself back into top spot.

It's happened to me over and over again. Completely understand your surprise, disappointment, and sadness.

Allow yourself time to rest and then start climbing that mountain again. We will all get there. We can't climb straight up, we have to go around so it takes us longer! :cool:

Hugs xoxox

Sandi K.

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Wem, we get it. rest up, it's all you can do honey. it'll pass.

I was trying to explain this to someone yesterday, I basically said I was like a short play record that had suddenly switched to long play...remember doing that on the turntable anyone? ...didn't half make the songs sound funny, long drawn out sounds. I'm a much slowed down version of my former self.

Seriously though Wem, the memory of the rush and the bustle and the freedom to just do what we wanted, whenever we wanted, it's so tantalising isn't it and yet for now out of reach. I like you am back working, not up to full days yet, and then when I throw the kids into the mix I have to throw regular rest stops in just to be able to function. They at least at used to mummy needing to slow stuff down but I find it exasperating. But we creep forward. And we are making progress. You know you are Wem. Keep it up lady! Maybe it's the rabbits being to demanding :lol:

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Wem,

I felt like that and it's my 4 year Anni (I think) 2009 yep 4 years.

I have just been to bed as I was shattered so it happens to us all Wem (Not much help am I). xx

Hang in there Wem we can all make it, good days and bad we will all pull through, after all we have each other.

Be Well and smile when possible xx

Love

WinB143 xx xx

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Thanks all for your kind words of encouragement.

Been back to bed for an afternoon nap for the fourth day running!

Fatigue comes nowhere close to describing the all consuming feeling of exhaustion. I have taken to shouting at sports commentators on the TV when they describe premier league footballers as suffering from fatigue at the end of the football season.

Fatigue! I can tell you a thing or two about fatigue! - it's becoming my catch phrase within the family and keeps us all smiling in the face of adversity.

I have had to cancel a babysitting evening I had promised my daughter this week, she is ok about it. I however, am in bits! Once a Mother always a Mother!

I will get there, with perseverance, the love of my family and a lot of help from my BTG friends.

Wem

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Ahhh Wem big hugs to you honey,

I'm there myself this week already and it's only Wednesday!

It's nearly 3 years since my SAH.

I go along, feeling quite good, almost like normal again (whatever normal is!) then it's crash bang into that wall of pain and fatigue. Head hurts, feels like its cracking, whole body hurts.

Work this week has floored me, wouldn't mind but the clinic hasn't even been very busy. I am doing some training with a new staff member though, that's quite tough on my lil re arranged brain, but in a good way.

Plus today I have been shopping with Miss C, so I'm now totally out of spoons!

A long walk along the beach is what I need!!

Stay strong dear Wem, you're doing fab, the good days will continue to out number the bad.

Take care,

SarahLou Xx

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Its like swings and roundabouts, you are doing great tho and almost 18mths isn't that long really in 'this'

No Rome wasn't built in a day you have Rome & a SAH both long time. but think how far you have come pat on the back for that hun...

For every downside there's always the upside to look forward to.

take care, hugs

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Bless you Wem!

You're doing really well though and just try to write off the rubbish days that you're experiencing at the minute ... don't dwell on them, as they will pass.

At 8 years on, I really hate the "fatigue" word ... and now just use "tired" ... normally with an expletive or two added into the mix...:wink:

The really hot weather knocked me for six and ended up with having a day in bed and just slept on and off, felt completely rotten ... none of this stuff helps any of us, but felt better for doing it!

Keep your chin up. xx

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Stay in there Wem

Your body knows when it needs to rest, but as it can't tell you, it warns you. Start listening to your body.

It's great that you've told others, it will help them understand also, some don't understand why they get so tired etc.

(ONLY WISHED A FEW DOCTORS READ THIS SITE, maybe they wouldn't be so negative!!---oopss started to rant then)

as they've not been told.

Don't put a time limit on your recovery, were all different, each tunnel is a different length.

It's learning to ADAPT, that's the key, and if you have other health issue, that could be a factor also, as your brain has to share out your bodies workload.

Many members on here, have been through, or a still going through what your going through.

Your not alone

Take care

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Not like me to post more of a observer but I so identify with you my Sah was Dec 2011. I started to try to work in July 2012 and crashed Jan 2013. Started again in March and now again finding it very difficult my job has changed three times in a downward way. All I can say is you are doing brilliantly and as everyone is saying listen to your body otherwise now it tells us what to do :-) . I have had to force myself to take a step back before my brain shuts down. Just a way of forcing me to have a quality of life is how I think about it. Anyway take it easy and don't push yourself too hard xx

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Hi

Thought I'd add to this thread. I'm nearly 4 years post SAH and still suffer with fatigue. Although I don't like it, I can sort of accept it.

The way we think about our situations is often how we feel about them too. With regard to fatigue, I no longer think of it as a linear recovery. By way of example, if I have a good week, it will not necessarily follow that the next week will be better and the week following that will be better still.

Instead, my issues with fatigue are patchy. I have good spells and bad spells. If I have a good week, I accept, (but do not like,) that at some point in the forthcoming days, I will have a bad patch. When I have a bad patch, I know that through resting it will pick up again. The good patches and the bad patches both pass.

Although I don't like the bad patches, I know they're coming and it takes some of the disappointment away because I factor it in. When I have a good patch I try and savour it, because I know it's not going to last.

For me, acknowledging that I have bad spells sort of takes the sting out of it.

Acceptance isn't about thinking your circumstances are great. I do not like living like this. I wish things were different. I don't like missing out on things, particularly with my son; but I can live with it. However, when I had the mentality that I had to push myself better and improve week after week - my issues with fatigue became a battle and a major sticking point. I considered myself a failure and I felt dreadful.

Psychologists have taught me to THINK differently about my situation and as a result I have started to feel better about it.

L xx

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Acceptance isn't about thinking your circumstances are great. I do not like living like this. I wish things were different. I don't like missing out on things, particularly with my son; but I can live with it. However, when I had the mentality that I had to push myself better and improve week after week - my issues with fatigue became a battle and a major sticking point. I considered myself a failure and I felt dreadful.

Lin, I totally agree with all that you've said in your post and if you have to manage long term fatigue, it really is the best way to handle it, in order that you can mentally stay on top of it.

At 8 years on, it's become part of my "normal" life and I factor it in, especially if I'm having a busy week ... not that it always rears up at the point, as I can experience it when life is quiet, so there's often no rhyme nor reason as to why it happens. xx

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I also agree with what Lin Lin says & she says it so much better than I could!!

I think I do all those things subconsciously & add in time for being quiet & resting. Occasionally the fatigue jumps out & bites me on the bum but mostly I know when I'm doing too much. last Nov on holiday we did a trip on the Dungeness railway & that was one of those times, I hadn't factored in the noise & movement & the cold weather which sapped my energy big time, it took 2 quiet days to recover!

there are lots of things I would love to do but I know even doing part of them will make me so tired its really not worth it. London will still be there & the stamp show is on every year so I still hope one day I will make it!!

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From the bottom of my heart..........thank you for the wonderful responses to this thread. It has helped me, and I hope it has helped others who may be suffering in similar ways.

Lin, as ever you show such wisdom and deep understanding of the ongoing issues we all face in dealing with fatigue. I have come to learn and expect there will be good days, average days and bad days but you hit the nail on the head when you say this is not a linear recovery.

For me, when my recovery and energy is trending upwards I expect that even though the bad days will come along, they too will follow the upward trend. How foolish! Because of course the higher I climb the further I can fall.

I have said it numerous times on this site, it is about getting the balance right. Never easy and I accept that I am quilty of putting pressure on myself. My family are happy that I am alive, full stop. I want more, I want to have a relationship with my Grandchildren that you can only get by spending time together. I want them to experience happy loving times with me, I want to create memories for them that will last long after I have gone. All of that takes energy, of which there is a definite shortage in my life these days.

Oh well, that is my dream and if I take things slowly and carefully, then I should be able to build those relationships. For now I need to focus on building up my strength and taking things easy.

Keep smiling and once again, thank you,

Wem

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Hi Wem, your post really resonates with me. I'm about 18 months out also and thought I was past the worst of all the fatigue, brain fog, depression, etc. Boy, was I wrong! My husband and I went on a two week vacation in June to France. We spent 6 days of that cycling in Provence with a tour group. I consider myself in pretty good shape - I recently ran a half marathon and cycle pretty regularly so I thought I'd be ok.

A few days after getting home everything hit me. I think it was like brain overload - the time change, not enough sleep, the physical exertion, the socializing, the stimulation of everything being new in a different country, etc. We've been home for over a month now and I'm STILL trying to get myself back to some sort of normal. I swear I spent hours just staring at the wall because my brain didn't want to work those first few weeks back.

I don't fully understand why this happened - it has been a year and a half. Can I expect this to happen for the rest of my life everytime I challenge myself in some way? I was able to be kind to myself the first few weeks knowing I'd been through a lot of change, but it's getting depressing now. Anyway, I hope you come out of the fatigue and fog faster than I am.

Edited by penny
Breaking up prose
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And I might add to all these true and wonderful posts, that fatigue for me come in various forms. Sometimes it is a foggy head, sometimes it is my legs going all weak and creepy feeling, sometimes it is crying uncontrollably in an existential spiral eve though my mood is stable and good, and it could even be double vision or light sensitivity.

I have learned that even though I can expect it out of nowhere, dealing with it often poses new challenges each time. I think that makes us all a supper 'roll with the punches' bunch of people. Most of society likes to think they're in control all the time, we now know that's a lie. that Truth sets us free.

~Kris

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Hi Wem,

I just want to pop on and add that you are doing so, so well. More so because you know this crash will pass. I think that's the most important thing to remember - the crashes are a phase that WILL pass. Yes, they will come again but again, they WILL pass. I find that the best way to deal with them - knowing they are temporary.

As a serious 'oldie' I always read posts about improvements still happening many years down the line & felt skeptical about this BUT I realise this really IS true! I went on holiday abroad for one week last year and was so seriously exhausted/fatigued that I could barely move for many days when I got home. I was so 'fatigued' that my face & hands went numb & scared the life out of me. One year later - I have gone abroad for 2 weeks, yes I am very, very tired, my 'fatigue' symptoms have been present....muddled speech, messed up balance & so very, very tired.....but I have kept going all week, doing all the usual household & shopping things. (with a few tantrums over little things thrown in :wink: )

I just want to say never give up, the improvements really do keep happening!! I was 5 years on in July and thought I'd got as good as I ever would. I'd like to be much better still but I can see the huge improvement compared to last year :biggrin: It's been good to see that :biggrin:

Michelle xx

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Oh my goodness improvements definatly happen way down the line I can certainaly vouch for that...

I didn't think they would or did but when I thought what I could do I realsized I had come a LONG way since those long early days.

Your doing brilliantly well hun, take care

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Hi All,

I am still struggling big style. Tried a short walk this morning (the first for nearly a week) and found I could only cover the distance that I was doing around 12 months ago, and that was with great difficulty.

Came home and cried, signed on to BTG looking for inspiration and found it!!!

Once again thank you for the posts, Michelle I desperately needed to read your message of hope today. I shall try to stay calm and positive, and to anyone else going through a similar experience to me............hoping things start to improve for you soon also.

Take care,

Wem

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If that was your first short walk in a week, then its not surprising to me that you felt that, sorry it reduced you to tears but think we can all understand that one.

I think I remember Michelle being sceptical, I didn't have anyone to relate to when I was first out of hospital the internet & this site has been a god send.

I did a computer course 2 half days leading to 3 half days just about done me in, then when I was 8yrs in we moved house this I could not have done in the first 3/5/6/7 years & if I'm honest I shouldn't have done it, but did went through every emotion plus the tiredness but am a stronger person for it.

That's what I did on the 1st Nov SAH Ani I would think of what I could do now that I struggled with the year before & Wow ok the tiredness the fatuge is still there & always will be its how some of us were damaged I try not to let it get me down coaping stratages.

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Hi Wem,

Well done for getting out and doing that little walk, you did it!

It is ok to not be ok, it's alright to kick and scream, please don't be so tough on yourself.

Perhaps read 'a letter from your brain', I find it really good to read when I'm feeling like I'm taking one step forward and two back.

I've learnt the hard way to rest when my brain tells me to, it just goes into shut down mode.

There really will be improvements years down the line.

I love to walk and have pushed myself with this, managing around 6 miles, some times it leaves me exhausted , other times I feel fine.

All you can do is what feels right for you at that moment.

Big hugs to you.

Take care,

SarahLou Xx

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Hi Wem

I found that fatigue is my biggest challenge unfortunately for me it hasn't gone away completely but I have learned how to cope with it and recognise now what will bring it on..but not always. Sometimes it hits when I least expect it. My husband also keeps me in check and reminds me to rest if I'm overdoing it! When I have good days I'm so happy to be feeling so good that I can get carried away.

I have found though that this recent spell of hot weather has really increased my fatigue. Its as if my tired spell during the day has been brought forward by about three hours which is unusual. Just the the other day I had to cancel my afternoon plans as I was pretty much 'whacked' by lunchtime!

I'm nearly five years post SAH.

I would say to rest up as much as you can and yes stay calm and I hope this passes for you soon. Worrying about it can make it worse.

Take care,

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Like Momo, I think having several people around that actually understand what fatigue really is for me, whom I charge with letting me know at the first sign THEY see, helps me out because sometimes it takes me a while to snap out of a denial state in the first moments of the fatigue. If another person mentions that I seem a bit slower than usual or that my speech is getting softer, then it helps me to see the fatigue earlier and I can take the steps I need before the crying or the crashing and burning which only leads to feelings of inadequacy. Instead, I can feel like I am my own master...leading my life towards success.

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