Hey there everyone, a quick recap. I had my TBI 13 years ago and I've been trying to put my life back together and find the direction I used to have. I started seeing (or zooming) with a counsellor who specialises in brain injury around a year ago and she's really helped me see that the problems I have (that I constantly beat myself up for) are normal given my TBI.
She told me how fatigue is very common in survivors and that a quick nap during the day can help. I feel tired a lot of the time. I've started to tell my Mum this and she is adamant that my counsellor is "putting ideas in my head", that this fatigue business is simply an "excuse" for "laziness" and that I need to stop talking about my brain injury and instead just to "get on with it".
She's made me feel so low, I'n struggling to get things done that need done. It's like she's pulled the carpet from under me...can anyone relate to this at all? Sorry for asking and sorry for this miserable post. Lucy x
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saville75
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Hi. If you look on the Headway website, there is a booklet available on fatigue. I was sent mine by the Headway helpline days after my ABI five years ago. It is very good at explaining brain injury fatigue. You can get the booklet or download it. This could be useful in explaining things. You could also call the Headway helpline on 0808 800 2244. They can offer support and ideas in explaining this, but also I am sure they could explain things to your mother if that would help.Regarding having rests, the helpline gave me very specific details on how to rest which might be helpful. Make the rests up to 20 minutes each, but no longer as you will go into a sleep cycle otherwise. Put a timer on. Lie down if you can, or sit comfortably. Cover your eyes and try to be somewhere quiet.
I have between three and five rests a day, depending on what I have been doing. Generally I keep to three. A very important thing I have found is to schedule the rests so that you try to take them BEFORE you really need them. This makes them much more effective than waiting until you are tired.
Something else that could help is a blue light therapy lamp. They are like the lamps for Seasonal Affective Disorder, but with blue light that has been found by researchers to help with ABI. I use my lamp on waking and sometimes at lunchtime. The lamp sorts out the circadian rhythms, helps with mood and with fatigue. There are plenty of articles online that document the research.
Very best wishes. 🌼
P.S. I would be very interested to know how you found your specialist counsellor, if you wouldn't mind letting me know? Thanks.
Thanks for your reply Marnie22. I actually sent my Mum that leaflet you suggested on that day. She phoned me about it and had clearly cherry picked from the leaflet - only talking about things she claims to have been telling me for ages. It annoyed me as it's a very good leaflet full of helpful info.
A blue light eh? I'll look into that as if it'll help me then I'm all for it. I currently (and for life I think) take 31 pills a day which is a real pain. But they're pain killers so best take them rather thean cut them out!
My specialist counsellor has been incredibly helpful. She is £40 for each hourly session and talks to me about the problems I'm having with all things that have stemmed from my TBI. She's provided me with lots of information about what's to expect from my injury and makes suggestions of things that could help. Power napping for example is what she suggested to me about fatigue and it does help, if at the right time of day. I can send you her details if we can do that privately on here... X
So sorry to hear this. Of course it's brain injury fatigue - poor you, being doubted.
My sister said something daft a while back about me needing some talking therapy to get over my distress about fatigue - somehow having missed the months of rehab and therapy - it does feel worse coming from someone close I fear...
But I think that all sorts of conditions that produce fatigue get the same treatment from others. I practically hugged someone in church the other day, when she said she understood what I meant by fatigue because her partner had CFS/ME. Utter relief on my part that someone else actually 'got it' and I didn't need to explain.
Oh Jen I'd have practically hugged her too! You're so right - when people understand it, I feel like jumping in the air and pwer fisting to myself! My counsellor has that effect on me nirtually every session we have. My character always simply blames myself for things I do, rather than actually rationally questioning why. It's such a relief when I realsie I don't have to self flog myself for things. The fatigue is something I've always beaten myself up for, so I disappear to bed for 20 minutes then return a much nicer person - at least that's what I assume my family make of it! Yes, I just wish my Mum would accept that I have changed since my TBI - I have a funny feeling that if she acknowledges the changes then it may open up feelings that she keeps locked away. I accept that in her. But it *does* make me grumpy. X
Yup I get grumpy too. My mum is having health problems and feels that her issues trump mine - that's what it feels like anyway - so we're now both grumpy. I need to find a way around this one, and am trying not to preempt how I'll cope with her and my fatigue, as she becomes more frail. My sister's advice is to have boundaries - which I suspect is easier to say when you live three hours away instead of three minutes... Wow, I really am feeling grumpy!
I suspect mother daughter relationships are pretty complicated things at best. I wonder what factors come into play when dealing with an adult child's health issues?
I remember feeling so relieved when I met the neuro team people, that they all totally 'got it' and the bewildering world of TBI I'd turned up in, was actually quite normal to them. Though finding this forum was better than months of therapy in terms of finally finding acceptance.
I can definitely relate to that, in my case it comes from friends, family …I have a number of autoimmune disorders one of which is related to severe fibromyalgia. Not only my brain but my body is like a shattered glass plus pain and fatigue is not tangible so others cant believe it.
I often struggle with those comments and just stay out of the limelight with friends and family. There is a common misconception amongst people; it hurts but on the other hand they are not in our shoes. Whatever you say I believe but it’s such a good thing that you have been doing talking therapy and I hope you get better day by day. Lots of hugs 🤗
Thanks for writing to me Painny. It sounds as though you suffer from terrible pain that as you say, people can't relate to. If they haven't stood in our shoes then they obviously can't, I just find that some people are more able to show empathy than others. Yes, I'm very lucky to have found talking therapy that works. I hope you're able to find something similar that you find helpful too X
You are welcome my dear and yes I’m going through a lot but I just don’t give a toss about those who are reckless and careless with their comments even though it hurts. 🤗🤗 And cheers to those who really get us xx
The barrier to being believed is the lack of visible signs of symptoms. I'm 9 years on from my Bi and, though I've given up trying to be understood, I do occasionally feel a bit neglected & lonely.
Do phone the helpline and ask for their printed leaflets on brain injury and the devastating after-effects, especially fatigue. Ask your mum to read the proven facts from the highly reputable Headway, and to have another think about whether such a classic, documented after-effect is really just laziness.
Sending some cyber hugs and understanding Saville... x
To be fair I'm probably feeling no more neglected or lonely than anyone else here ; I imagine many of us struggle at times with the 'stiff upper lip' to protect loved ones - (you once said 'We're only as happy as our saddest child').
We each have our own coping methods and keeping shtum works best for me. 🤐 Son & daughter would be here in a heartbeat if needed though ; we're a great team.
And people like you, here on Headway, can boost my mood with a few kind words. So thank you TBIX for yours ! (knowing you and your daughter live with the effects of Bi, they mean a lot). 🤔
Hi, I can relate to what you say. I have often tried to explain why I have the problems I have. Some of them sound quite trite. Many people say, oh I get tyred, or I forget, or even why can't you. What ever way I try to explain doesn't seem to paint the picture.
But it is like, explaining to a person who has been blind from birth the colour red, or the person who was deaf the sound of a bell. If they have not had a similar experience, how can we expect them to grasp what we feel, live with. It is so abstract from anything they consider as normal.
I have recently made contact with a nurse I trained with, the difference was she trained in adult, and I in mental health. We are both nurses (or I was). You'd think she would have a reasonable understanding of brain injury. The reality is that the two branches of nursing are very different, she approaches it as it's broken, there must be a fix, me it's broken, there is a recovery.
We have both had what is called a 'common foundation', but that is where the training parted.
This I hope illustrates why your mother has difficulty understanding, and coming to terms with what you have had to.
Get the information as others have suggested, give it to your mother, and hope she will move nearer in understanding. 🍀
Beautifully described Pairofboots - "it's like explaining to a person who has been blind from birth the colour red..." that makes so much sense to me X
Hi there. I see that you've had some really good advice here. But I can empathise with what you say about those not affected by BI often having no understanding of fatigue, memory loss or other symptoms. Its slightly different, but a few years ago my husband's cousin died of a brain tumour. Neither my husband or his sister could fathom why he 'stayed in bed' for so long before his death - and that's despite me having a BI!
Hello, I think everyone here will empathise with your feelings as we all experience the same BS from those around us. Even my wife who worked in care for 20 years tells me I’m being lazy if I have a daytime nap
I know Mads1975, the fatigue being "lazy" - ufff I wish it *was* just me being lazy and I could snap out of it! But no... X
Hi Lucy,
It sounds like your mum has not grasped how life changing a brain injury is. My daughter suffered a TBI 3 years ago and struggles with fatigue, migraines etc (that’s just a couple of things on a long list). I advise her to take things at her own pace and rest when she can. I really don’t understand why a lot of people seem to think your life can just carry on as it was pre brain injury - they must not be aware of how the aftermath can affect so much of your life both mentally and physically. Please don’t beat yourself up for problems that are not your fault. You sound like you are on track with the counsellor and it’s good to talk to someone who understands and hopefully can empathise with you.
It could be that your mum finds it difficult to deal with herself but I can see that by her dismissing how you are feeling due to the brain injury, it would be very hurtful and frustrating for you. I personally find it very difficult to deal with what happened to my daughter as it’s such a shocking thing to have happened. Please be kind to yourself 🙂
Dear Saville75, living with a TBI in an able bodied world is a lonely thing. We can explain and explain to people even those close to us but understanding neurological fatigue etc... is very difficult for them as I'm sure you know. Their perception of us is so rooted in how we were before brain injury and what they still want us to be, to achieve in life for ourselves, they sometimes they feel they just cant accept the new reality no matter how many years pass. These things might apply to your mum. Do you go to a local Headway group or Zoom meeting? Could your mum go too it might help her if she sees how other people are affected by their injuries and their fatigue.
Thanks Obiwan - I phoned Headway - the local office during lockdown and there was nothing going on, of course. Maybe I should give them another phone and see what they have running now that the country has opened up a bit! X
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