Fatigue management course

[jodr]

Good morning everyone

Hope it's as sunny with you as it is in Herefordshire!

On Friday my husband went to a fatigue management course set up by a local abi group. This was the first time he has met with other people with brain injuries and he really enjoyed it! He hasn't wanted to go to anything through headway as he says he'd feel like a fraud as he is only just starting to accept that he has a bi. He's 6 months on now from his injury. However meeting with others ina similar situation to him seems to have had a really positive effect and I'm so pleased! It can be a very lonely road and I'm hoping that by hearing others experiences that he can relate to will continue to help him come to terms with where he is at. He's not back at work yet and doesn't see anyone other than his immediate family so his the group he has started to attend could be a real lifeline for him. I personally have found this forum my lifeline and has given me more of an understanding and helped me come to terms with our new life..which is definitely a good thing!

Happy Day everyone xx

[Kirk5w7]

Well done to him, it's a big step he's taken and I'm proud of him for that. Men deal with illness differently from women and I'm sure he'll be seeing that if he admits he's got a BI it's a sign of weakness, but far from it admitting it affects you is a strong thing to do, and doing something to improve his, and your, quality of life is so admirable.

I'm sure he'll come on in leaps and bounds now.

Take care,

Love Janet xx

[jodr in reply to Kirk5w7]

Thank you for your reply you're absolutely right about men finding it harder to admit a 'weakness' my husband has always been a very strong and able person so it was hard for him to even admit to his parents that he was still far from recovered. Yes hopefully he's on the road to accepting so he can help himself by not expecting too much from himself he's definitely been more chipper since Friday long may it last

[Kirk5w7 in reply to jodr]

Hi again, thanks for replying.

You know I believed all they said about a 2 year recovery, it's been 5 years to date with mine and I still see improvements, but I still have ad days. But, I can cope with those bad days because I know those days pass, I just have to be kind to myself and if I don't feel able to do anything then I don't.

I've found help from reflexology and massage, acupuncture and just recently from vision training. The NHS said there was nothing wrong with my sight, but I knew differently. The vision training assessment showed just where the problems, were and she understood what my difficulties were.

I have a raft of physical exercises to hone my eyesight and also my vestibular system, worth every penny. Long may this good days last xx

Janet

[jodr in reply to Kirk5w7]

Thank Janet yes although it already feels like a lifetime I know we are still in the early stages of recovery. I'm so glad you have found alternative ways to help you. Although I'm not the one with a bi I have acupuncture and reflexology to help keep me in balance. We are no good to others if we can't help ourselves!

My husband is the same has bad days but just like you we know that they will pass now and he's learning to listen to me and his body and resting when he needs to. It can be a bitter pill to swallow realising that he isn't able to do as much as he could before however it's the first step in embracing what he can do. Hope you have a good day today xx

[Hidden]

This forum is certainly a lifeline! So many lovely people willing to help each other

Glad your husband enjoyed the group. We have been to similar Headway events.

[jodr in reply to Hidden]

Yes it really is! I don't post on here very often but just reading others can be therapeutic hope you are having a good weekend xx

[Hidden]

Hi Jodr its been a mixture of cloudy with spells of sun here in Derbyshire. Its brilliant news to hear that your husband has attended the group. He should get so much out of it, just having people going through the same problems can make so much sense and a big difference. Plus he may get tips from others that have struggled with a particular thing, and found a way to cope with it.

I am so glad this forum is helping you in a supportive and informative way. I have never found such a great forum before, full of people willing to offer support and advice but more importantly willing to listen. I am so pleased for you xx

[jodr in reply to Hidden]

Hi lovely yes I totally agree this is a great place

He's been much calmer this weekend like you said sharing similar experiences with others can be a great help. I think not knowing anyone else on a similar road can make it harder to accept that there is anything wrong as well as the bi making you feel there's nothing wrong too! He has another on Friday then they're monthly for 3 months I think

His better mood has meant he's had a really lovely weekend with our boys too which we all really needed xx

[Hidden in reply to jodr]

That is brilliant, it shows he's had some weight lifted and coming to terms with a bi is a big thing and its all showing in him relaxing I am so pleased to hear it. He could look at activity groups as well then he will be active and socialising inbetween the gap in the other group.

I bet its a huge relief for you too, its a domino affect in a positive way. He relaxes then you do and then you have a lovely time with your boys, what more could you ask for. You deserve it xx

[jodr in reply to Hidden]

Yes its great he's giving them a bath at the moment and all I can hear is laughter!

[Hidden in reply to jodr]

Oh I am so pleased for you hun

[Grapple5]

Hi jodr,

Great news that your husband has found enjoyment from the group...and also that you find comfort from this forum...it has answered lots of concerns I have had too! I have also suffered from severe exhaustion/fatigue since my accident in June 2016...I wondered if you could tell me how your husband accessed the course as I think it would be very helpful to me also. Thanks 😊

[Ruby-Ruby in reply to Grapple5]

Hi jodr,

thanks for posting about this. Is the course relevant to post stroke fatigue? It may be helpful for my husband, what sort of things does it cover? As you say, meeting people in a similar situation to yourself can be a good thing as well.

[jodr in reply to Ruby-Ruby]

Good morning yes it would be relevant for your husband! One of the other gentlemen on the course had had a stroke. Friday was the first one so not sure what will be covered in the others it's done over 4 months. He had a fatigue chart to fill in everyday to see when his energy levels were highest my husband has 25% energy levels compared to before his bi. Also they were given 'home work' of practising mindfulness to help with anger/stress. One of the best things though I think was just meeting others ina similar situation to know that you're not the only one! Being able to talk to others and 'compare' how everyone has been affected. My husband had been much more chipper since Friday it's been a real godsend I really hope there is something like this in your area. The group my husband attends in called HABIT (Herefordshire aquired brain injury team) and as well as this course they come to our house every couple of weeks, they are going into my son's school to help school understand more, they have an occupational therapist to help support return to work and a neuropsychologist. They are brilliant and it sadly was blind luck finding them we happened to see a doctor at his surgery who referred him (we'd seen quite as few others before this one!) Hope you get some support as well its such a shame it's so hard to come by!

Xx

[jodr in reply to Grapple5]

Good morning sadly it was blind luck! He happened to see a doctor at his surgery (after seeing quite a few different ones! ) who referred him. They are called HABIT (Herefordshire aquired brain injury team). They have been brilliant though as well as this course which I think is over 4 months they also have an occupational therapist who will support him when he goes back to work and also a neuropsychologist which at the moment is too soon for my hubby but in time we have been told will be helpful to him. They also come to our house every couple of weeks and are going into my son's school to help school understand more too. They really are brilliant I just hope they have one in your area too! The fatigue management course was great my hubby to meet others in similar situations.he hasa fatigue chart to fill in each day to see when he has the most energy he averages at about 25% energy levels compared to pre bi. They also have been given 'home work' doing mindfulness to help with anger issues. It has been great for my husband it was just a shame it took so long to into the system! Really hope you find something like this too xx

[Ruby-Ruby in reply to jodr]

Thank you, I will look into that

[Hidden]

Hi, of course the brain needs a lot of sleep to do its repair and maintenance after an injury but if it goes on I suggest a simple (and cheap) 24hr blood oxygen monitor. I had fatigue for a decade after mine and had to give up work until I changed GP and the new one listened to what I was describing and referred me to a Respiratory Consultant. Basically I fell backwards and damaged the part of the brain that controls breathing - it is not so much apnoea as not breathing enough - Central Alveolar Hypoventilation - especially when I exercise or whilst asleep. I am now on an oxygen machine 24/7 and have can stay awake. It is worth eliminating...

[shaunmcg]

It helped me immensely meeting others who had BI. I went to headway groups including fatigue management (I fell asleep!) I too felt a bit of a fraud as my BI wasn’t as severe as some others! Just frontal lobe damage and hydrocephalus and a shunt fitted . Didn’t spend any time in a coma 😁

[sealiphone]

I attended a group who all experienced CFS, run by the ABI team. Great laugh at each others problems, 'normals' would have been outraged.