Your fatigue journies

[Futurecut]

Hi everyone. I'm 14 months post severe tbi. I also suffered paralysis in the same accident. My survival was very uncertain to say the least. Rather than inpatient Neuro care for good I rallied and quickly became well enough to cope with spinal rehab which was prioritised. So I've never seen a neurologist. I have very few cognitive issues, my scores are all back up to population averages or better. But oh boy, the fatigue is just outrageous. Disabling.

I expect my question has many answers- but have any of you seen fatigue reduce over the first few years or is this just it?

X

[steve55]

im 7rs post abi. it is said the more intelligent you are, the less you tend to lose mmmm.

any sort of concentration causes fatigue and i tend to nap for 2 hours in the afternoon.

[Danger19]

Hello my lovely,

My accident was in January and despite very serious injuries and an extremely long operation I have had no physical or cognitive problems. I'm one of those really annoying people that doesn't even look like I've had an accident. I have exactly the opposite problem to fatigue. Since my accident, I never sleep! I don't even get tired! I've had every type of sleeping tablet ever produced and nothing helps. At the moment I am on my fifty second night with no sleep and it's a living hell. I know that Subarahnoid haemorrhage can cause sleep problems but this is horrendous. The last time I slept lasted for forty minutes. It's really strange because my thinking and ability is exactly the same as before my accident. I don't understand how my brain can function as before when it gets no rest. I would love to know what it feels like to feel tired.

Obviously I understand that this doesn't answer any questions for you but I want you to know you are not alone. We are all left with some kind of symptom to struggle with. I really hope something is available that can help your fatigue and anything else you are struggling with.

I wish you peace, happiness, good health and a whole lot of luck,

Vikki

[Emeraldgal]

Hi there, I am nearly 3 years post tbi due to car accident, but I still suffer from fatigue. I started working again however the commute back & forth is a killer as its over 45 mins. Once I get home I have to go to bed for at least an hour. It has slightly improved over time so I'm hoping I soon will get used to the transition. I reckon everyone who has brain injury will recover differently, some quicker than others so don't beat yourself up & take each day as it comes xx

[cat3]

Hi Futurecut. I suspect it's a bit early for you to have adjusted to the new regime of brain injury. It took me 2-3 years to get the hang of managing the fatigue by pacing myself between activity and resting.

I'm 7 years on now and my week last week was (among usual daily routines such as cleaning, cooking etc.) ------- SAT : Visit shopping mall for birthday presents. SUN : Sleep most of the morning and pottering later. MON : Heavy gardening all day. TUES : Early hospital appt. then resting 'til teatime. WED : To daughters for grandson's b/day & straight to bed @ 8pm. THURS : Hedge cutting, digging & planting all day 'til late. FRI : Visit from son in morning then bed all afternoon.

It's the same with social occasions which I either avoid, or embrace but from which I'm always 1st to leave. I'm not sure the fatigue has reduced for me personally, but it's definitely manageable and no longer feels like the overwhelming issue of the early days.

Respect what your brain/body tells you m'dear and you'll hopefully find the right balance for you . Pushing your boundaries occasionally is necessary for progress, along with resting, loads of fluids and fresh air.

Be patient with yourself ; your brain's still healing so time's your friend ! Cat x

[Hidden]

Hi

My fatigue came through having a stroke 4 years ago. I now live a mostly normal life through having learnt to manage/live with my limitations.

In the early weeks I was sleeping like 18 hours a day. It has improved vastly over the four years, and to give you some idea, in the last 6 months I went from working 3 days to 4 days a week.

The best advice I can give to hopefully help, learn your limitations before it kicks in. Do activities/chores in short bursts, pushing through fatigue I found has little benefit. My fatigue had trigger points, noise was a massive issue until I sought out private therapy for it. Keep life as simple as possible and try not to become overly mentally involved in things. I also found physical exertion could bring it on too, but not so much these days.

Finally well done & congrats on your recovery, it sounds like you're doing great.

xx

[Nikkisue]

I’m about the same amount of time and however much I try to ignore it and carry on I can’t the fatigue grabs me and best thing to do is sleep it’s never enough but it’s all I have

[Futurecut]

Thanks for sharing everyone, a real mixed bag there! Gives me a bit of hope. I guess a years nothing in brain time.