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Hi Everybody

I am now 5 years post coiling and am now experiencing extreme tiredness worse than I have ever had. I was just wondering if anyone else has had this so far along the path to recovery.

At the moment everything I try to do is an effort, I just want to sit or lie down most of the time. I am seeing my neuro in September after I have had a further scan and I'm also off to see my GP soon but just wondering if anyone else experiences this.

Cheers

John

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Hey John

I'm definitely more tired than I was before the SAH - I had this past week off work as it was half term and my step daughter was home for the first time in two months - and every day I slept in until at leat ten thirty or eleven - even though I wasn't going to bed any later than I would had I been at work - so I definitely need more sleep than I did before my SAH.

I also haven't the enthusiasm to do much when I get back from work either as all I want to do is lay on the sofa and chill - I'm five years on in August. In every other respect I feel fine but its that lack of energy and motivation that annoys me more than anything.

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I am a year post clipping tomorrow & i feel the tiredness is worse but then I realise I am sleeping less but doing a hell of a lot more plus it's been half term so Nathan has been home & I haven't been able to rest at all!

I do get sick of saying I'm tired all the time, like a stuck record but truly I feel tired from the minute I wake up to when I go to bed but then have trouble dropping off or wake early. I must get some more excercise I think!!

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I am 7 years post SAH and I still get awful fatigue.

Much of it is probably my own fault as I try to do so much and fight through it until there comes a point where I just crash and sleep for England for a couple of weeks.

This seems to recharge my batteries but I still don't pace myself and still fight it until the same thing happens again.

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John, I'm nearly 6 years on and the tiredness and lack of motivation still persists and I really have to push myself. Might well be worth you mentioning it to the GP and get them to do some blood work, just to check that there's no other cause which could be making things worse for you.

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Hi John,

It will be 3 yrs in July since my SAH, I still have to sleep every afternoon or become ill and stroppy!

It's not like in the early days when just having a shower would exhaust me but it's still a major impact on my life. This weekend I wanted to do stuff in my garden but I had to walk to the shop (DVLA grrrrr) I can't do both. If I walk to the shop for the basics (bread, milk etc) I am so wiped out I sleep all afternoon and garden, ironing etc don't get done......I try to plan it all but when I look at friends who can do it all, I realise how different life is for me now.

I get times when I think 'I am better now' for a week, then it hits again, positive thinking is a brilliant thing but doesn't make the body behave the way you want it too....

I'm still trying to find the happy medium - but I am sure it is possible...

Michelle x

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I'm the same John tiredness/fatigue has a nasty habit of slowing you down when you least expect it. I love having 2 days off mid-week but my new hours are really taking there toll the only way I cope is a caffeine injection......Costa coffee loves me :wink:

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Hi John, I am the same. Am two and a half years into recovery and was doing really well managing fatigue.........Or so I thought!

Recently I have experienced an overwhelming tiredness which doesn't respond to a 'duvet day'! Its really knocked me for six. My batteries simply won't recharge like they used to do. My thermostat is all out of sync...... am extremly hot one minute and extremely cold the next! And my legs feel like lead has been poured into my bones.

Am seeing the doctor and having tests done.

Hopefully you'll get some answers when you see your neuro and your GP.

Keep us posted.

Good luck John hope things improve soon x

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Hi All

Been to my GP and basically he told me to pace myself. I did or still have a virus which is doing the rounds of my area and my GP told me that due to the fact I've had an SAH will make me feel worse and take longer to recover. He wasn't surprised when I told him I was so exhausted and rest is the only answer.

My wife had the same virus at the same time but fortunately it has now left her so as we all know SAH's don't come on their own.

Cheers

John

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Good you went to the GP John. Take time to recover and take it easy!

Hopefully sooner rather than later you will start to feel better.

I am falling into the trap of thinking I am (or rather should be) better. On my good days I can't imagine feeling so tired as I often do!

And that's why we need our pals on here to remind us that we are still recovering. And whilst it may be several years since the event and not just months we are still vulnerable and need reassurance from others who like ourselves have a blip now and then.

Maggiex

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Hi all,

I don't think the Doctors know any thing about the tiredness or fatigue that ensues from the aftermath. They are brilliant at keeping us alive with the mechanical process of medical repair but can only guess as to what makes us all so tired.I've given up complaining or searching for reasons as to why I get so tired, it's just how it is.

I work three days a week for five hours a day. I know, it's nothing compared to most people, but it's all I can manage and even then I have to sleep for an hour as soon as I get home.It's really deep sleep as well. I arrive home at 5.30 and put Neighbors on, but have no idea whats going on because after 5 mins I've gone.

I get bone deep tired, but have to say that, six years on, it is manageable and would dread that feeling of fatigue that followed the event.

The Doctors look for physical reasons for everything (God bless 'em) so "brain tired " doesn't register. There is no known reason for our tiredness. Now there's a study that Oxford Uni should commission. Me first!

Bill. x

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  • 2 weeks later...

Hi John

How you doing? I was very glad to read your post. I'm going through a similar thing. I'll be 4.5 years post SAH. About 2 years ago after my menigitis was picked up and sorted, I felt amazing, now like yourself I feel things are getting worse and worse again.

So currently waiting on an appointment with my new G.P to see how to tackle things. On another note my loved ones proposed that possibly I'm not necessarily worse than before, but because things have been so much better when I push myself it does hit like a tonne of bricks. I think there is some merit in that but at this point I'm just so fed up with the whole thing.

However I have found pacing myself and follow guidelines and advice for M.E sufferers to be the best thing, eating healthly and taking vitamins etc. Annnd of course drinking plenty of water.

If I have anymore luck, I'll get back to you.

Hope you r doing better.

Hang in there

Slim

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Hello John, it must be tough getting so tired such a stretch after your SAH. I am glad you are getting a medical opinion and trust you will get a helpful result;-)

I feel I have done so well 21 months on, but do collapse after I do too much. I feel like my immune system has been compromised too after the SAH and a couple of other things in the past. I feel good, try on too much and then, as many others have said, I get soo tired, soo quickly and I sleep for Australia. Apologies for that reference Penny (see earlier post by Penny in this thread) - I'm a republican:lol:

I am looking forward to a week in the desert this week (around Uluru) - I leave this morning. Yeh:-D I did too much over the last 2 weeks, got too tired, got a short but intense sickness and now, damm it I am down on energy and tired. This is a holiday though, so I will reluctantly reduce my plans of doing long walks if my energy doesn't allow me too and do lots of resting and recuperating.

I look forward to reading your next post

Tracy

Edited by Bandicoot
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Hi All

Been to see my GP and basically the diagnosis is due to the fact that I caught a virus weeks ago it has aggravated other conditions that I have ie:- spinal arthritis and SAH. He told me that it will take longer for the bug to leave me and the tiredness,aches and pains are part of the condition.

He tells me that it will wear off in time and to pace myself. It is slowly easing off thank goodness but I have really never felt so exhausted. I am due to see neuro in September and will also mention it to him but basically I am led to believe that if you have had an SAH many illnesses that people suffer with can be a lot worse for us.

One thing for sure whoever gave me the virus PLEASE KEEP AWAY FROM ME!!!:devil::devil:

Cheers

John

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  • 2 weeks later...

I have decided to pick up this thread because I am getting bouts of tiredness and find myself confused as to the reason why.

I am undoubtedly able to do more in a particular day or week compared to when I came out of hospital and I am happy that I have moved on from that.

Life is different to how it was, and in a way, I accept that. I do remember how busy life was, i.e. working full time and long hours, rarely taking holidays (so stupid in retrospect!), socialising frequently, not to mention the odd marathon here and there, to ‘relax!’ I am not happy that life has slowed to a snail’s pace in comparison, but I do accept it, albeit grudgingly some days.

Why then, after a week, which cannot be described as busy in the slightest, have I had two unexplained days of wading through treacle? I call it my ‘satellite delay’ when I am a few seconds behind the pace of everyone else. This reminds me of the early days of recovery. Is it normal that it is still happening?

My boyfriend noticed yesterday when talking to me that I was not quite ‘with it.’ I slept most of the afternoon and when I tried to wake up, it took a good 30 minutes of starring into space to focus.

Today has been similar. I have managed a walk/ jog and so this is not a physical fatigue. This is purely a mental tiredness.

Does anyone else suffer with this mental fatigue? I find myself in a paradox where I can exercise; but a mere conversation or being in the company of people can wipe me out.

I am sure it is very difficult for friends and family to understand. On one hand I am capable of going for a walk/ jog; but must do so on my own, because ‘chatting’ whilst exercising would tire me. It seems that going for a walk is less taxing on my brain than inviting a friend round for coffee...

Does anyone else know what I am talking about?

Edited by Lin-lin
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I have found myself to be less physically tired but mental tiredness is a worry still. TBH I haven't had a situation where I am expected to converse & do other things for a while so its hard for me to be exact. I usually find 3-4 hours is my max & then I'm wiped out & again I usually limit my social interactions to a couple of hours just out of experience now. Nathan will be on school hols soon so that will be my big trial so will update you more then!

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I have days where I'm just "quiet" ... I find that conversation (or making conversation and listening) can be quite taxing, even though I can do the physical stuff, so I don't classify it as fatigue. I'm quite happy to be "left alone" and just to get on with things in the physical sense, but don't want to do the talking or listening!

I really don't know why this is, but yes, it can be like "wading through treacle" and it's also a time where my short term memory lets me down, as even though I can hear the conversation, I can't take it in or re-call it and I find myself asking the same question or asking for information a few days down the line. Frustrating for me and frustrating for my family, as I seem to just be going through the motions.... it's hard work!

I can still only hold a 1 to 1 full on conversation for a maximum of 3 hours and then that's it, I'm blown! .....my brain switches off and the lights go out.... I need some "quiet time" ... It might only be half an hour, but I need the quiet for a while, even though I can do the physical.

Lynne, if you're having periods of blanking out or don't feel "with it" at all, I would advise that you also get yourself checked out with the Doc and rule out anything medical.

I'm going to be 6 years on at the end of July and I still find the mental fatigue a pain to deal with and it's limitations on a social scale .... and I know that it's hard and annoying for my family to deal with too and my lack of short term memory, when I'm trying my best to look normal, but the lights aren't on!

Hope my ramblings make some sense! xx

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I call that staring into space or out the window 'quiet time'. No TV, no conversation. Just quiet. I need it everyday since my head exploded. I used to need it all day, then most of the day. Now some days I can make it through with only a few minutes here and there but other days I need a few hours. After my brain starts to perk up I can add a quiet activity such as viewing BTG posts from my iPad while laying down. Sometimes I need full on sleep but mostly it's just quiet time. My brain shuts off.

Sandi K.

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Hi, I want to add another few cents of optinion to this discussion. I too find it curious what makes me tired. My SAH & op were in Sept 09 and I am feeling generally so much better. The neck and shoulder and jaw pain are easing but I am still feeling the tiredness and findiing it concerning at times.

I am glad that I am working out how much physical activity I can do and have been building up the amount of walking I can complete without getting exhausted. I just had a great holiday at Uluru and Kings Canyon in the Australian Central Desert but I did have to ensure I had adquate rest. I went exhausted from work but am proud that I managed 3 big 5 hour walks (including lunch) with a day in between. I find I generally need to do walking in the morning so that I can rest in the afternoon if need (I did that at Uluru). I am doing a yoga class one evening a week and can achieve that ok too.

I came back from my holidays feeling rested (as I blended activity and rest well). But one day back at work and I was feeling quite tired at the end of the first day. After my second day I was even tireder and my brain feels a bit mushy. I have a job that requires me to find solutions to problems so I now believe that thinking is tiring, so yes I have mental tiredness that makes me want to curl up and sleep (I'm glad I am not working tomorrow - Wednesday).

I wonder if I can apply the same principles of exercise to my brain that I do to physical exercise? I will have to experiment. Perhaps I need more "starng into space" time that Lin-lin and Sandi mention. Perhaps a bit of meditation will help or a power nap - I used to power nap, but now I freefall into deep slumber. Tonight I am now going to blob, maybe have staring into space time or watch the mind numbing Celebrity Chef.

Tracy

it is getting better

Edited by Bandicoot
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I too feel just as Lin said, mental fatgiue, talking to people can be the most draining. I recently have had a bad patch of this and went to the doctors with it, who run some test all came back "normal" ! got appointment with him 2mrow and im going to try and explain how i feel as you have all describe as it is how i feel. I can be scary after thinking you where doing so well, then it snecks back up on you and scares the hell out of you again. When i get this fatgiue i find old symtoms come back , as aching in my neck , shoulders and across my chest, my left arms feels heavy and abit numb and my legs feel like lead.I always go very pale too. Anyway will see what the doctor has to say 2mrow, i bet he is sick of seeing me:lol:

Anyway , take care all xx

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Hi Everybody

Thanks for all the replies at least its put my mind at rest. I go to the gym twice a week and also swim but when I finish I feel OK but if I read a book or newspaper I'm gone in about five minutes. Also I find if I sleep during the day I feel totally "not with it" when I wake up yet when I wake up from a night's sleep I'm ready to go.

I also agree about GPs. Mine is marvellous but he is unable to say while I feel so tired, he just says its the brain's way of recovering which I suppose is a good answer. As I said previously I'm due my next scan in August and see neuro in September so hopefully some questions will be answered.

Cheers

John

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I echo John's sentiments.

I found everyone's replies very helpful and it undoubtedly helps to know that the mental tiredness is a feature for us all who live with a brain injury.

As long as I know it is ‘normal’ for us, I can accept it better.

Thank you,

Lynne

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I have days where I'm just "quiet" ... I find that conversation (or making conversation and listening) can be quite taxing, even though I can do the physical stuff, so I don't classify it as fatigue. I'm quite happy to be "left alone" and just to get on with things in the physical sense, but don't want to do the talking or listening!

I really don't know why this is, but yes, it can be like "wading through treacle" and it's also a time where my short term memory lets me down, as even though I can hear the conversation, I can't take it in or re-call it and I find myself asking the same question or asking for information a few days down the line. Frustrating for me and frustrating for my family, as I seem to just be going through the motions.... it's hard work!

I can still only hold a 1 to 1 full on conversation for a maximum of 3 hours and then that's it, I'm blown! .....my brain switches off and the lights go out.... I need some "quiet time" ... It might only be half an hour, but I need the quiet for a while, even though I can do the physical.

I can totally understand the feelings of frustration/wading through treacle/brain switches off moments as I also get them. You have described it perfectly Karen, and like Lynne I can also go to the gym and feel okay but if I try to have a conversation or am trying to listen to something on tv etc then I can just seem to switch off as it is more mentally tiring...especially after a day at work! And I usually find I am worse midweek and then again at the end of the week...

Kel x

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