Fatigue - Very Severe, Disabling

[Brisan]

Does anyone here live with extreme fatigue / exhaustion / low energy? For me it is both physical and mental, severe enough to be disabling, and causes me to bed bound. It is difficult to feel positive about living in this way.

[Ocean96]

Hi Brisan,

Thanks so much for bringing this really important topic up. I think it's something all survivors of encephalitis have dealt with and still do deal with.

If you get a chance, The Encephalitis Society has a really helpful fact sheet: encephalitis.info/physical-...

Also here's some tips from someone recovering from encephalitis: youtu.be/3F3YJurnMVk(Not working as expected?)

[alpappy]

I only have that when I get one of my relapse episodes,lasts about three to seven days then back to sort of normal but have fully regained the stamina I had

[Crazysquaw]

Hi Brisan,I suffer from extreme exhaustion that tends to come in waves. The length of time varies between each wave as does the length of time it takes to recover.

I hope you can find a way manage these symptoms.

[Kate0090]

Hey, yeah I get really bad fatigue, and it seems the more I do especially at work the worse I get, I then get the headaches, dizziness n brain fog, I'm struggling to find a balance, totally get where your coming from, and then you get sad because your not living a normal life, like going to the shop might trigger it, I'm off work at the minute and it really bothers me and wonder am I going to have to find another job that's not as stressful... less money... it can feel really overwhelming, but we have to put our health and brains first and try and stay positive which I know is easier said

[GreenBamboo]

Hi Brisan,

Fatigue is my main struggle now. I no longer feel 'unwell' when it comes on though, thankfully.

When I had fatigue in the first 4 months following the onset of Enc I could do nothing but go to bed. I would feel unwell, with the shakes, lack of balance and couldn't string a sentence together properly, all I could do was go to bed but this was a daily occurrence and so debilitating.

Now I find that too much thinking (cognitive stresses) affects my fatigue more than physical assertion. So I have found strategies that help:

- try to plan my day and space out activities

- make sure I include rest breaks so that I do not get onto that 'boom & bust' cycle

- do some deep breathing 'switch off' short sessions

- be mindful of fatigue

But the above in themselves are hard work!

This is the affect for me that is so frustrating but I have finally realised that fighting against is not helpful and so I have come to a point of acceptance (sort of )

I have been helped by a ' fatigue management course' that has opened my eyes to different strategies that can help.

Hopefully, over time you will feel a little better to be able to find ways that work for you.

In the meantime, are there any quiet activities that you enjoy that you could include in your day that you could manage for small periods of time?

I hope you start to feel a little better very soon.

[Gandalf2]

Hi Brisan, You don't say what stage you are at, seizures etc..I've been out of hospital for about 18 months, 7 seizures and an induced coma on 24hr watch and drips etc.It's pretty universal to suffer from extreme fatigue. Just getting out of bed was a struggle for me in the early stages. Walking too had to be relearnt - but I wasn't going to use the pee bottle or bed pan if I could help it.

Once at home I managed to walk to the end of the road as my first excursion - I needed two days of complete rest after that. It took a long time but I'm improved and although I still have a long way to go before I can do what I used to, things do gradually improve.

Now I can walk a mile or so and can face a walk to the local supermarket. A trip into town is out of the question - too busy and unnerving. Doctor's and hospital appointments are OK. Memory loss, taste and smell loss, foggy brain that is easily overloaded - then I have to sit or lie down.

It can take a long time - but every day I notice an improvement.

Best Wishes G2

[Remos]

Hi Brisan - this happened to me 3 weeks ago (I’m 6 months out). I’d been building my walking distance up and decided to go further than before at a really quick (too quick) a pace. When I got home I started to feel really unwell and totally fatigued. I spent the next 2 days in bed and am still not quite back to where I was ( but getting there). So it happens. You’ve just got to rest and don’t panic. Take it steady. You’ll get there.

[OldGnome]

Hello Brisan!

I will add my comments too! As others have said, fatigue is indeed a common after-effect of having encephalitis. In my case, I need to sleep for about 16 hours per day, PLUS take another 2 hour nap during the day. Fairly recently, I have begun a new med which is helping a lot. The fatigue is still very bad, but I am slowly improving over time.

I used to have the power and abilities of a supercharged Caterham 620. Nowadays I am more like a 1985 Yugo, with a dead battery most of the time! 😆 It's important to maintain a level of humour in all of this, as I have found. Some days this can be very difficult, though.

How recent was your bout with encephalits? I am curious as to the timeline of your healing process.

In the meanwhile, there's lots of great information on the main website here, and fellow survivors of encephalits to swap tales with. I have found them to be a great bunch, full of compassion, good advice, with some fun stuff thrown in, from time to time! It's always good to know that one does not suffer alone!

Hoping your day is as good as it can be!

OldGnome

[Ocean96]

Hi Brsian,

Here is some more tips from the encephalitis society:

With a better understanding of the causes of fatigue and the pattern of energy across time, the following suggestions may be helpful. Please note that a professional assessment is recommended to develop an appropriate and individualised management plan. There are two main ways of tackling fatigue problems: general lifestyle changes and a specific treatment plan. There are also ways to improve sleep that could have a positive effect on fatigue.

Lifestyle changes

Manage your time by re-setting priorities with the aim of maintaining a reasonable schedule of activities.

Act to reduce work hours and/or level of personal commitments.

Have relaxation and/or rest periods.

Develop good sleep habits.

Maintain a balanced healthy diet.

Practice regular exercise (within prescribed limits).

Reduce intake of stimulants both prescribed and non-prescribed, including caffeine.

Reduce alcohol intake as this may affect the quality of sleep.