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Not been on here for a while, feel guilty cos I am only here now cos I need help! am 14 months post clipping and stroke been doing ok, walking and now driving again, left arm still pretty much useless but I still feel so ****** weak! I am really tired all the time and have absolutely no energy. Would love to hear anybody's tips for alleviating these problems. I can just about manage a walk round the supermarket but dare not go without my chair cos when the fatigue hits it really is like hitting a wall! The docs say there is nothing they can do for me but I feel that i no longer have any quality of life as I can do nothing worthwhile any more.

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Hello Painter,

I'm also 14 months on from SAH, I also had clipping.

I don't have the phycical limitations with any limb but I do know exactly how you feel with the fatigue. It went through a stage where I was having more bad days than good but has slowly turned the other way around. However I find when I do too much I hit a wall with fatigue, it's like my brain just shuts down and says 'no, I've had enough, I need rest'. I've had to learn to listen to my body, I know that if I've done a lot one day then I'll need proper rest time the next day or things just catch up with me and I can't cope. This Wednesday and Thursday I had a lot going on, come yesterday afternoon my head was throbbing, I felt tired beyond words, struggled to put a sentence together.

I know it's really hard but you have to have patience and understanding with yourself.

Your mind, body and soul have been through so much. But you're here, you're fighting!

Have you read 'a letter from your brain' on the home page in inspiration? That piece of writing made me look at things very differently.

Remember what things were like in your early recovery, I'm sure you've come a long way since then.

Do your family and friends know how you feel? Have you talked to your gp? Gosh, so many questions, sorry!

I hope that you find that ray of light to brighten your day. You've come this far, continue to fight to find something to cherish in every day.

Take care,

SarahLou Xx

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Hi Painter,

I'm sorry to hear that you feel a bit rubbish at the moment and that you have no quality of life & feel like you can no longer do anything worthwhile. Although the doctors say there is nothing they can do, there is still every chance that you will improve further over more time (I know, we all get sick of hearing about giving things time.....).

You have a different quality of life now, that doesn't mean you can't do anything worthwhile anymore. You will find a balance eventually where something you enjoy makes life seem better again. It may not be something you previously thought of as worthwhile but being who you are and still being here is very important to the people who know & care about you. It might not be running marathons or working 7 days a week but something slower paced that makes you happy (and possibly helps others along the way?) is very achievable. It just takes time to find what it is you want to do & enjoy doing. Other suggestions I've read on BTG have been things like photography, painting, gardening (this could be in pots rather than heavy digging if that is difficult for you). Voluntary work where you could perhaps help others who are in the same position as you to see how much you have improved since you became ill.

Are you involved with any groups like Headway? I believe they have councellors too that may be able to help you find a way through the feelings are you are having.

Or perhaps even talking to others there would help you to think of ideas that may help you to feel better emotionally.

There will be something out there to help you enjoy your life more and I'm sure you will find the thing that makes you happy with the life you have now. It may be different from before but it may even turn out to be better!

Best wishes

Michelle

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Hi there

Yes sorry that your feeling like that at the moment, wise words from Michelle I was going to suggest getting intouch with Headway they are very good, re the supermarket if you need a chair then go in a chair around the supermarket there is nothing more mentally & physically draining than going around the supermarket, are you still trying to fit in all the things you used to do, this I found was my bug bairer.

Im sure there is something for you if I could overcome that problem Im sure you will too, get in touch with your local Headway have a look at their webpage....

take care

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Hi Painter, I find the supermarkets to be especially challenging. The lighting, the displays, the moving people and shopping carts, and the noise are all draining even on days when I'm feeling well. It's too much stimulation! Can you do some of this shopping online and have it delivered to your door? I did most of my Christmas shopping online last year and it was such a relief.

While in hospital the nurse insisted I hold my IV pole on wheels when I walked to the toilet. She said it would help support me even though it was on wheels. So now I insist on pushing the shopping cart in the grocery store. I do find that it gives me a bit of extra support. I don't have a chair, I suppose it's not the same when you have a chair but perhaps something to try when you are feeling up to going without your chair.

Sandi K. Xo

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Fat I have .......so much of it, joke but true...tiredness I get when bored and not going shopping, ,,,,mind I did sleep 4 months in

1 year after SAH........Too much partying with my deceased family ..lol....I really had a good sing song when I was out of it !!

Now when I am down I sing...drives my family crazy but keeps me happy....plus my sisters used to sing with me when I was out

of it.....My Husband used to go to lunch when we started singng, I remember none of it but a nurse said I sang to her ???

My Dad only taught me rude songs when young !! poor other patients !

When you get tired try singing or think happy thoughts .....just keep smiling and be positive you will suceed trust me I have

been there and got dents in the head to prove it Keep well xx

A song to keep you awake ~ Oh Dannyboy the pipes the pipes are calling, From Glen to glen and down the mountainside zzzzzz lol

Take care to all of you xxxxxxxxxxxxxxx

Regards

WnB143 xx

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  • 3 months later...

Hi Painter

Sorry to hear that the dreaded fatigue is still ever present for you at the moment. I'm just over 5 years into recovery and do not suffer as badly with fatigue unless I get too tired or over stressed. We continue at our own pace in recovery and it is an ongoing road to recovery. Hope you feel better soon.

P.S supermarket shopping still gives me a really bad head and I always use a much smaller store now....less noise and lighting works for me even if it costs a few more pounds :wink:

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  • 4 weeks later...

Painter,

It's so funny that you write this now. I'm contemplating going to the store by myself for the first time and I'm going to see if I can come home with everything on my list (hope springs eternal). I know I should do it on a day when I have nothing else pending so whatever happens...happens. I'm trying to have that attitude with all of life now. However, it does get hard sometimes when you just want everything to be the way it was. Bluh.

~Kris

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  • 4 weeks later...

I'm struggling with fatigue.

It comes on slowly, I think of it as blankets being placed on top of me. One after the other, they keep piling up. If I stop and rest the blankets start coming off, one after the other they come off. The whole thing takes awhile. They slowly pile up and they slowly come off one at a time. Sometimes I do myself a favour and I don't ignore the blankets. If I stop and rest sooner there are fewer blankets to remove. Most of the time I plow through in a rebellious state of mind stubbornly refusing to acknowledge the blankets and then other symptoms come such as blurry vision, dizziness, sore muscles, headache, inability to concentrate or comprehend.

'pace yourself' everyone says. What does that mean. 'take breaks' everyone says. What about exercise?

I've been searching for stuff on the Internet on managing fatigue. I found this little snippet. It has some good advice in a little leaflet. http://www.gloshospitals.org.uk/SharePoint5/Patient%20Information%20Leaflets/GHPI1016.pdf

I hope the link works. It talks about pacing and a bit about exercise.

Sandi K. Xoxoox

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I agree there is some really good advice but I don't really agree with what's written about 'bad days' arguing against resting. I find when the fatigue hits I have no option but to rest! But it is all about pacing yourself but you have to push things a little to find your limits.

I also like your description of what the fatigue feels like Sandi, that awful feeling of your body weighing a ton. I've always likened mine to a deflating balloon. Nowadays it's like the air slowly escaping and this is my sign to rest up and scale things back. When I do this I can feel the energy coming back. Earlier in my recovery, when I didn't recognise the signs it would be like the balloon pops. I describe that feeling to my family like the cartoon character that has been run over by a truck and is completely flat and I have to wait until I 'pop' back up!

Again this is when this website is so fantastic. It's always reassuring to hear from people that have similar experiences and that there is light at the end of the tunnel. It's just that all our tunnels are different in the length of time it takes to come out of it!

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Interesting article and I agree with Liz. That's not to say that we're all different and perhaps some of us can exercise on a bad day, even if it's just taking a small walk.

I agree that exercising on a good day, not necessarily the gym, but walking or gardening or whatever you can cope with, will definitely help to increase your stamina and energy levels.

Interestingly, I'm experiencing some bad fatigue after a spell of migraines with aura, so I'm out of action with any "extras" ... I've learnt to tackle all of the basic chores in the house first, it's something that I prioritise and then anything else is a bonus in my day when I feel like this.

As for exercising during spells of fatigue, then I'm afraid to say, that it's a big "no" for me, I've tried hard to push through these spells, as I'm going to be 7 years on this year. But, I get to the point where it just lays me up and I have to cat nap and just do what I can, I'm stubborn and will try to push through it, but get to the point where I can't and have to give in. I still have a neck left on my aneurysm and have an abnormal shaped artery on the other side of my brain, so I know that I need to be sensible, even though I feel that I do push my own personal boundaries, as that's my character.

Pacing yourself is something that you have to work out .... you need to push the boundaries to be able to see what you can do today, increase it gradually and if you start to feel bad signs of fatigue, then you need to put the brakes on for a while and then try again. xx

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I'm so grateful for your replies. It's very confusing for me.

I also have a print out from the University of Washington Medical Centre that says part of managing fatigue means exercising regularly.

However, I'm finding myself crashing when I'm already fatigued and I push myself to do a minor 3km walk on the treadmill in 20 minutes.

I really miss the feeling of a good workout. A few months ago my psychologist said it might not be a good time for me to be concerned with exercise.

But it seems there are mixed messages? Karen, its similar for me in that if I'm already covered in blankets of fatigue then the treadmill or bike only send me horizontal and I often have tears following too because I'm so tired and feeling defeated.

I wonder if we are meant to do a tiny bit everyday (I laugh inside because I can't imagine doing anything on a workday anymore except work).

Sandi K. Xxooxox

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Thanks for posting the link Sandi.

I was interested in the bit that explained that for some people the fatigue becomes a way of life you have to learn how to manage. The NHS leaflets I got say it is something that lasts for weeks or months, this makes me feel guilty and as if I shouldn't still feel this way after nearly 4 years. I Couldn,t have tried harder to be how I used to be, for me it didn't happen so far and it helps to have this validated. The neuro psychologist understands it and has confirmed that it can be a permanent problem for some people but I haven,t seen any other literature that backs this up till now.

It also helps to understand that daily brain functions now use up so much more energy than they used to and this adds to fatigue.

Thanks again for posting it!

Michelle xx

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If I don't have a goal in my day...Then I think I could sleep for England ....wonder if 2012 Olympics will want me, hmmmmm lol

Seriously I cannot walk very far but I try to push myself....Like car park to Cafe pushing wheelchair as an aid...botty sticks out

and back aches...I always take sunglasses in supermarket....I am the only one with them on when raining..lol

Sunny today so I never looked out of it ..phew..!

Keep going and never give up....thanks for link Sandi

Love to all

WinB143 xxxxxxxx

Edited by Winb143
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Michelle that's what I don't like about the bit 'however doing very little for a few days leads to decreased fitness and motivation', yes it may lead to decreased fitness but the one thing that comes across in abundance on here is motivation! Seems to me that everyone is full of motivation to be the best that they can be and reading something like that could make you think that you're some how failing. Having feelings of guilt because of fatigue will mentally drain you and make the fatigue worse, I believe.

I'm not allowed to go to the gym because of the brainstem stroke and my blood pressure. I can't walk fast and I can't run, again as a result of the weakness down my left hand side. I've been told to walk, so I do. I walk almost every day but it's taken me 3 years to get this stage. I get dreadful backache and headaches when I first increase the distance, I have scar tissue at the top of my spine and at the lower end. I walk the short distance to work during the week and again a short walk on a Saturday and a longer walk on a Sunday. But for the last two Sundays I have managed to walk 4 miles! I'm smiling with satisfaction as I type this! I also have to do my physio exercises each day to stop my neck and shoulders from stiffening up. But when I feel that deflating balloon sensation I have to choose between this physical exercise and being able to function mentally. I scale back the physical, that includes housework and this allows me to function better at work. I used to love the 'high' I got from a session in the gym but I'm getting that 'high' again after my Sunday walk!

Sandi I have to agree with your psychologist, it's maybe a pressure that you don't need right now but it's very difficult when we're given all this conflicting advice from 'experts'. I agree with Karen that's it's about prioritising what's most important to you and then being able to add to the list as when the body allows.

Edited by Liz D
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Hello,

Thanks for posting the article Sandy. I found it very helpful. Hope you are well. I havent found the energy to work out yet but I hope to. Work is enough for me right now. I call fatigue "my mountain". I feel like I'm climbing a mountain with no legs. And just hanging on the edge of a cliff. This week has been a little better though.

My wife and I are going to try and play golf Sunday. Should be interesting. She has surgery Tuesday so she wants to get her exercise in now. Dont blame her.

The whole exercise and fatigue thing seems like chicken or egg to me. If I exercise, will I feel better or worse. I do miss working out and getting the heart going. i will do so again. Thanks for psoting Sandy and all other replies also.

David

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I spoke with my psychologist about exercise and fatigue. I explained I don't have any energy at the end of the day. She said its important to keep at least a tiny bit of exercise in the routine. Sometimes it's just impossible though and workdays are like that for me.

I'm off today so I did 5 miles on the exercise bike. If nothing else I feel like I accomplished something!

It is very much like chicken & egg, what comes first.

Liz, I do agree with you. My fatigue has nothing to do with lack of motivation or commitment or drive. My psych told me again on Friday that my drive is too strong and I need to scale back.

Sandi K. Xoxoxo

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Hi, this interests me a great deal since I had a SAH on 1/9/2010. Fatigue is my greatest problem still. Although I am back at work, when I get home all I want to do is sleep. I've just been back to the hospital where I was treated. I have had some tests and what they are doing is investigating the Pituitary gland which secretes hormones into your body. Apparently a SAH can make this gland deteriorate and when it does it cannot recover. So they have taken some blood from me every so often and also injected me with some hormones to see the effect. I have not had the results yet, they are due in about two weeks time. The hormones they looked at were the growth hormone which although doesn't affect growth in adults, does affect your sleep and the body's ability to refresh itself. Also testosterone and Prolactin? Apparently if my hormones are deficient I will need to inject myself with them from a kind of needle pen such as those used by diabetics, but instead of insulin it will be the hormone injected to correct the deficiency. I don't know if this will help anybody or everybody and I don't know if this treatment is available widely either or even if it will work. Only time will tell.

In the meantime, when fatigue kicks in I try to watch something that make's me laugh, like Mrs Brown's Boys, or Early Doors, Mock the Week etc. It brightens me up for a while and lifts my mood particularly if I am feeling a bit down.

Hope this helps and I will post my results when they come but there are no guarantees!

Edited by Macca
missed a bit out
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Hi Macca

I had treatment last year for a malfunctioning pituitary gland that was damaged by my bleed. This does cause fatigue and is releived by replacing the hormones that are affected, although I'm lucky enough to take tablets. But I had other symptoms, I was starting to put on weight, my hair was falling out, nails becoming brittle and breaking, very dry flaky skin, puffy fingers and even spots on my face! My treatment worked, hair grew back in, nails are fine, weight is finally starting to come back off and energy levels started to get better. But I still get fatigued if my brain's had a lot of stimulation, all the usual things we complain of.

So if it is your pituitary you will find things get better with treatment, good luck.

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Hi Macca & Liz,

I've never heard of this so am very interested in it. I'll look forward to hearing how you get on Macca. I'm thinking the bleed or blood from it must've been near the back of the head? Is this where the pituitary glad is? I know my annie was at the front of my head (but don't know where the blood spread to) so it may not be something relevant to me? However, any glimmer of hope to beat the awful fatigue is very interesting to me.

Michelle x

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As a coach and fitness trainer I can attest to a little exercise being very beneficial for fatigue. It gets the oxygen moving around the system and can help not only with how you feel, but with your outlook. It gives you a little bit of control. However, exercise is defined completely differently post SAH, from what I'm learning. It doesn't have to be the gym or the treadmill. Even doing some neuro exercises (tapping your feet in a rhythm, laying your hands, one palm up one down and "flipping them", touching each finger to your thumb in a rhythm) can be beneficial not only to the neuro pathways, but can give you a sense on "I am doing my exercise" on those really rough days. Even stretching can be considered a workout on a rough day, and is beneficial. I've found that when my head is really singing, my neck tenses badly and I need to do at least 3 stretching sessions of the neck and upper body, or it makes the headache worse.

What I'm learning as a real exercise nut post SAH (mine was not as bad as some of yours) is that on good days, I have to get out and do something, but it is defined completely differently than what I did in the past. I used to do much more strenuous exercise, but now it's not so much. At first that was disappointing. Now, though, I'm realizing that for my mental AND physical health, if I can can even do some upper body work with bands (my PT gave me something that will tone, strengthen, and build neuro pathways...bless that man) for 15 minutes I feel like I am more "me".

Push through fatigue? I wouldn't suggest that. The brain, as its healing, takes more energy to heal than does a muscle or a bone and requires more energy when working overtime (which I feel it pretty much is ALL the time for us).

We ARE allowed to redefine our lives right now within the context of where we are, so redefine what exercise is for you, on this day. You can only be the best YOU today that you can be. You don't have to be super athlete every single day. However, for the benefit of your physical and emotional health, some exercise every day is essential (within the context of your abilities).

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Macca and Liz,

I'm so glad you posted this one. I will be printing this page for my doctor to read. I already mentioned the state my nails are in now and the spots and flaky skin. I NEVER had nails like this, which look like I've been biting them all my life. I did have spots in my teenage years but they have been popping up four at a time now for quite some time. I like to tell everyone it's just a reminder of me still being "young". :cool: Hope I can get to try oout this treatment.

Sally x

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I'm interested in this too - after all there has got to be some reason as to why I have to sleep during the day so often. Eight days ago I started recording, on my calendar, the days whereby I fall asleep during the day, during those 8 days there has only been one day where this hasn't happened:roll: I will try and remember to ask my gp what he thinks when I next see him on 19th. I think Liz mentioned on another thread that beta blockers were another possible cause of tiredness - I was prescribed these to help reduce the aura of migraine that I suffer from, but I might ask the doctor about those too - anything to stay awake all day would be nice:-D

Sarah

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Just want to add to what Sarah has said in her post: I started a diary (well a notepad really) a few weeks ago after getting a locum GP about my sick note for the Benefit system in the UK. He asked me what my problems were - I have no idea how to explain the last 4 years and why I had to leave my job. Obviously, I know why, but how do you explain fatigue & cognitive issues in a 10 minute appointment? I kept a diary for 4 weeks (the length of the sick note he issued) and have to say I was really shocked to see how much I sleep during the day & how often I need to take pain relief nearly 4 years post SAH. Luckily I didn't need to prove myself at the appointment this week but it is helpful to me to see how bad things are even though it was upsetting to realise the extent of how different I am now.

Also, I agree with what Teechur has said. I always feel better if I can exercise (for me that is walking), it is great to feel good that you have done it but I have to factor in the 2 hour sleep I need after a 1 hour walk. I think that is where the exercise/fatigue issue hits a stumbling block. It's great to have that achievement but not great at all to have no energy for the rest of the day. Absolutely agree that the mental benefits from the walk are very good for me.

Michelle x

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Hi Goldfish Girl, Liz D and Kempse,

Many thanks for your replies. As I understand it, my bleed was towards the front and I was unconscious for 6 days. The pituitary gland is behind your nose and between your eyes although I stand to be corrected if anyone knows better. I never knew before now that I may have to have hormone replacement! "Man? I feel like a woman!" Where have I heard that line before, ha ha? Seriously though, I hope it works if I have to have it. This is Easter weekend and I have slept for most of it and yet when I get up, I seem to feel just as tired as when I went to bed - it is enormously draining, not just on my physical state but also on my mental state, as I just want to shake off the fatigue and remain positive. I am lucky to have people around me to help me do this, but even then it can be difficult on a bad day! But, there are good days also, I'm glad to say, but when I've had one of them, the feeling of exhaustion the next day can be enormous so I have to make the most of them. When I really think hard about it, the very worst of it is that I have no control over when I feel good and when I feel bad ie I can't control it and that's what I don't like. Does that resonate with you also?

I am glad the treatments you have had appear to be working. Watch this space!!

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