Happy New year to everyone, I know it early days since my SAH of my ACOM , I had the web procedure only been since October 2021, but this feeling in your head does it ever go .The only way I can describe is like a drunk feeling and dizzy ( the room is not spinning ) I walk as if I have had a drink with my balance some days worse than others . I can’t walk out due to this and the fatigue and I overwhelmed with everything so the 3 times I have gone out it’s been in a wheelchair, car journeys also make me feel worse than if long .
I also just say random stuff sometimes not appropriate and rude which is upsetting.what’s getting me down is this constant feeling in my head , will it ever subside or is this how everyone feels that’s had one it’s something we have to live with. Last year before this we had booked to go to the lakes in August , I do t even feel like looking forward to this now and think we should cancel as I won’t be able to do anything if this is how I’m going to be .
I have an appointment for an MRA this month and also an appointment with the rehab consultant. Occupational therapist phoned beginning of December and said long waiting list will call back still waiting .
Sorry for long post x
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Blu37
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Hi Blu, never a need to apologise on here, we have all been there in one way or tother.
I had a stroke which left me prone to my brain verbalising what it thought before the filter could catch it. Headway have an ID card you can ask for, Headway contact details are pinned to this page. The card is recognised by the NPCC, and you can have certain details of behaviour that you want on it.
I at the time, made a yellow notebook size laminated card which started with in bold, "I AM SORRY" then in small writing explained a little about what had happened to me. I only used it a few times, but it was enough to get me out of a couple of scrapes (I am not saying this as a replacement for the Headway ID).
Things do get better with time, but with brain injuries, it can take a long time. You need to maintain what you are currently able to do, and build on this. You need to be more aware of potential problems, and build in safety measures, like you know you experience dizziness, it maybe that for the moment, you go out with someone, or you use a stick to increase your balance. There are medications that can also help in some cases.
Be aware of fatigue, don't push to fight this, if you need a rest, have a rest. Sometimes you can't avoid it, but you can be better prepared in making sure you have had enough sleep before, and after you can rest. Like the holiday in the Lakes, you know the journey will be challenging, a good rest before, travel when it is not going to be busy, and a good rest on arrival.
A lot of what we do, need more planning, especially in the early days.
It can be difficult for our nearest and dearest to comprehend what we are feeling, and it isn't easy for us to explain, Headway have information about various aspects of the recovery journey, these can be downloaded from their website.
Keep us up to date how you are getting on. There is never a need to apologise, big or small, someone will be there for you 24/7.
Thank you for taking the time to reply , I saw the card from headway and P.A.U.L for brain recovery sent me the forms but you need photo ID and I have not been out to get that yet. I was having to get use to fatigue before my aneurysm as I was recovering from 2 surgeries and 6 weeks radiotherapy to by back for pleomorphic sarcoma and just that week started to go out on my own when the ruptured aneurysm happened. I am now as I call it back in my dark place upset as I’m now grounded , hubby back at work so on my own again just looking at 4 walls . The lakes will be hard if I’m able to go as we have booked to take our caravan and taking the daughter and grandson who are very loud , contemplating selling the caravan as at this moment it all seems to much , when I had my cancer my daughter used to joke when we go to lakes if I’m too tired she will push me in a terrain wheelchair , it’s not knowing how I will be as regards to fatigue and balance and I know we are all different so no one can tell me .sleep at moment a problem as I keep having awful flash backs of ICU and the oxygen head tent I had to have on as I had hospital pneumonia and oedema in my lungs . Lucky to pull through consultant said so I should be grateful I’m hear
Have you spoken to Headway, they can offer a day service so you at least have some respite from the four walls. Also they have information that might make it easier to explain things.
Having disturbed sleep make life a lot harder. The neuro-psychologist can help you with the flashbacks, and it might be helpful to be referred to the neuro-psychiatrist, not because you are not sane, but they approach thing with the brain injury in mind.
With regard to the holiday, is there a way of maybe not having your grandson there even if his mother can't go. Explain how stressful you will find things if they attend.
PairofbootsNo I’ve not spoken to headway about the day service , not sure what that is to be honest , how would I get to see a Neuro physiologist do I have to find one myself or do you think the rehab consultant that I’m getting phone call appointment can help it’s my first consultation with him , thought he would need to see me about my head feeling and also balance , not sure if it’s when I look around or when I move my head.
The place we are staying at has plenty for grandson to do , even if we stay on it and not go out it has a superb playground , football small pitch and 125 acres approx of adventurous woodland which my hubby , daughter and grandson will go and enjoy My family think it would be ideal for me to get away , even if I just sit outside the caravan and enjoy the scenery , don’t think they understand the fatigue and how my brain feels at moment , hoping my brain will feel better by then and it’s just the fatigue . We stayed before there , it’s so upsetting I had loads of plans for this holiday . Feel like I have nothing to look forward to .
Yes you should be able to be referred to the neuro-psychologist, by the rehab consultant.
Headway day service, I was resistant of attending, but it was good. You meet others that have experienced head injuries, so you get the social contract and exchange tales. I used to find that it felt like I could be myself, brain injury and all, there is usually a lot of quite dark humour, that we get. There are usually what they call lessons, they are not really lessons, but what some may regard as silly games, some are word finding, some involve imagination. Other lessons maybe skills based, painting, card making, other craft type activities. All these are accessible activity. Some centres have exercise equipment, there are usually trips out to, maybe the shopping centre, the sea side, or the zoo, they give you experiences that you may not think of. And you get a pretty reasonable lunch. The Headway helpline should have details of a service near to you.
You are right that your family don't understand the fatigue, the cannot understand, the fog, the treacle. Headway can help them to understand either by way of information, or by chatting with them.
I have been exactly where you are currently, I know how dreadful it makes you feel, and in some ways, isolated. I promise, there are better days ahead. You just need to reach out, you have taken the first step by joining the community here. We can guide you, and we are always here for you.
It is a challenge, but a challenge that is worth facing.
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