Is this really all worth it.....?: Hi Everyone, So... - Headway

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Is this really all worth it.....?

screepy1 profile image
13 Replies

Hi Everyone,

So I had a stroke in 2016 which messed me up alot, I had memory loss as a result, constantly messed around by different hospital departments and no-one really has offered any advice/help. I've never been good with emotions and feelings and how to handle them, and I feel like I was just left...I presume it could be due to my age and being told well you're young, you're brain will heal! (I was 28 when this happened!) I had Brain Surgery May this year to remove a cavernoma and at first I thought this is brilliant, I'll feel back to my old self in no time....funny thing is its 5 months post op and I just don't know who 'I' am anymore, I now feel constantly angry, fatigue is a massive issue for me right now (yes I know its early days post op but still...) I went back to work in August/September and slowly increasing my hours. The only support I have is my husband and although he has been brilliant at times, I really don't think he fully understands that my mood swings/anger issues are the result of the surgery and being sensitive to loud noises. My mood is so bad at the moment that I am contemplating ending life. For once I opened up to my husband and told him how I felt, he said I needed to seek professional help, which I can't do. I just can't trust other people, I cant trust professionals and I know that's a pathetic reason, but I also suffer badly with anxiety, so opening up to people face to face and telling them how I feel is very difficult for me (I've trusted professionals in the past to be told I shouldn't of gotten pregnant if I wanted to help my mood...so doesn't really fill one with hope and light...) I just need an escape. I can't make friends easily, I am socially awkward and make stupid comments! I'm just scared that if I carry on spiralling down it's going to get worse and I'll end up going threw with it. (I've tried to commit suicide twice previously) I also can't sleep at night and have pains in my arm, this i'm on anti depressant medication for and hoping to see the GP on Friday to get this sorted...... but I just need someone to talk to me and make me see that this is the rough part in life ..... Sorry for the massive message.... I just don't know how long this can continue for..... :/

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13 Replies
Kirk5w7 profile image
Kirk5w7

You know screepy, life is only ever worth what we put into it.

We can only play the hand we're dealt in this world, and it can be pretty s**** for some people.

I get pains on my arms, they are caused by damaged nerves in my case and have only responded to acupuncture, I tried that at the instigation of my GP but I can't afford it indefinitely.

If the antidepressant you are talking of is amitryptilene then it's given in small doses for neuropathic pain and as such may not help your mood at higher doses it's an antidepressant.

I know it's difficult to trust at times but if the professionals are reading your responses to them as uncooperative then they will react accordingly.

I work with my GP to try and make my health as good as it can be but I read a lot around my health problems and try to meet him more than halfway.

I am 5 years into recovery and desperately trying to fine tune my problems now, it may not be possible but I will continue to try there are too many people, mainly family members who support me and I owe it to my hem, as well as me, to be the best I can.

I am bought I could manage without counselling but it did really help once I gave it a go.

Speak with Headway and let them guide you.

I hope you can find the right path to follow.

Janet x

razyheath43 profile image
razyheath43 in reply to Kirk5w7

yes do get in touch with Headway they are brilliant! you can trust them,they understand and that alone is a huge help

spider555 profile image
spider555

Part of it is finding a good GP and referral services x

screepy1 profile image
screepy1

Thank you all for the support. Janet, with my gp hes fabulous, if i could deal with him then i think itd help, the issue is getting an appointment, but i always try to help myself in any situation and try and do things to stop feeling this way, ive just hit a really bad time and never felt like this before. Im on amitriptyline yes, only 25mg currently and that was just for pain but also helped my anxiety/sleep issues for a while too, it just doesnt seem to be hitting a spot at the moment so Im hoping he'll increase it. The issue is getting help, im useless on a phone and trying to get emotions across and have emailed samaritans as i can get alot of my thoughts and feelings across wloy better that way, and again emailed headway, so just waiting for responses, which granted i admit will be a waiting game. Ive got a cpn nurse but again contacting her on the phone frightens me, so i must admit its difficult when i physically cant talk on a phone. Im trying to take my mind off it by walking my dog, but then i hit a wall of fatigue so its a catch 22. Thank you all though!

Kirk5w7 profile image
Kirk5w7 in reply to screepy1

Hi again, I'm taking 35mg of amitryptilene at the mo, it doesn't help the pains in my arms but as you say helps sleep issues, I've upped the dosage as far as 60mg and now on the way down again. My GP has given me free rein to find the right dosage as long as I keep him informed. I do telephone consultations with him which are easier to get than face to face ones!!!!

I'm stressed by using the telephone with people I don't know but not with others.

I really do sympathise it's not easy.

Another of my problems is a balance issue which is worse on days that I get a feeling that my head will explode, this is aggravated by the weather!! My own barometer!!

So I'm awaiting a referral back to my last neurologist I saw at the rehab centre, but I wonder if he's still there.

It can be easier to use emails but that can slow things down terribly.

Keep on trying you'll get there

Janet x

Bards profile image
Bards in reply to screepy1

The Catch 22 of 'keeping occupied while managing fatigue' is very familiar. And, as you know, if you're in a relationship it's not just yourself who has to live with the irritability caused by an overstretch...

I've also been pretty poor at seeking or accepting help, but we're both in this Group so that in itself is positive :-) And as we are aware, the more support we get the easier things will be for Significant Others. You're on it x

moo196 profile image
moo196

Hang on in there ...

too tired to write much myself this evening - -but do try to be kind to yourself and big yourself up for getting this far !!

Take care :-)

moo196 profile image
moo196

Just thought I'd add a couple of things this morning :-

There was another post of similar thoughts the other day - may be worth looking back at responses there ( just that someof us with BI can't write lots of long messages every day and you may find some more good tips/support and at least know you are not alone in these darker times).

Also - in the past ( and I have to remind myself sometimes now too ) I recall the phrase that kept me "safe" - " Suicide is a long term solution to a short term problem" - it appealed to my logic. I understand that we all want faster solutions - but sometimes it just isn't possible.

I found that when well enough helping others in any small way also boosted my sense of being useful ( if not to family / colleagues) .

Have a good day!

screepy1 profile image
screepy1

Wow, thank you for all the responses. It certainly helps to not feel so 'lonely' I'm looking into getting some help from Headway, my husband has printed off alot of things and is being amazing. I too appeal to the 'permanent solution to a temporary problem' moo196. I just get tired of feeling this way and at the minute seems the only escape from all the stuff going on. Like you I'm exhausted, so only a quick one x

keeley24 profile image
keeley24

Joining a group is best thing anyone can do. I had BI over 5 years ago and after getting back walking had nothing. Luckily I was able to manage as I was able to carry on with day to day life. Only problem being not getting out to meet people. On ESA so never met anyone. Joined headway which didn't work out as everything that was planned got cancelled as not enough people were interested. Didn't go to the coffee mornings as I thought not knowing anyone would make it awkward waiting for someone to talk. Moved area last july and went on few courses in hope of getting to know people. Well a few week courses don't really give you chance to get to know anyone.

In May this year my mums mate told me about a BI group she'd seen advertised. Only problem being it was an hour from where I live or 45 min on train in place I'd never even been to. I decided to contact them to see what it was and if it would be worth going. The plan was go a few times then go once a week or every other week or something. Well I had a one to one with a woman who works there and went to a social time. It got to stage where they said I didn't need one to one but should go to the social times. I agreed as main thing I wanted was to meet people. I had been going twice a week to one to one and social time once each every week. By time they said I didn't need one to ones they started an allotment group where people can go and help out or just sit and talk. So I started going to that. They also have given people Fitbit to count how many steps we do and we have regular competitions with them. Of course not everyone is able to but everyone is encouraged even if it's only to beat their own records. It has been best thing I've done joining this group everyone is so friendly and encouraging. So joining a BI group is definitely something you should try to do.

screepy1 profile image
screepy1 in reply to keeley24

Hi Keeley24, sorry whats a BI group? I've never heard of that before. I've just spoken to Headway Helpline who have advised asking for a neuropsychology assessment, so will be asking my GP for that referral tomorrow.

Thanks for your reply!

TaIaV profile image
TaIaV

Hi Based on your latest post, it seems like your husband loves you very much. That is a wonderful thing.

As you note, he cannot possibly understand exactly what you are going through but his love is undeniable and that is sure to help your healing.

I am sorry that you are going through this and that feeling better will take more time. My nephew had multiple TBIs and felt terrible for a time. Some help and new opportunities enabled him to experience the difficult moods and noise from a bit of a distance, which really helped as he gained strength and capability. Please direct as much love and patience toward yourself as possible.

keeley24 profile image
keeley24

BI group is meetings and get togethers with others who have BI.

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