I have not had an easy week.
It started off with my vomiting for most of last Monday evening and while I may have physically stopped puking the rest of the week has had a similar way of kicking me in the guts...
I had been thinking about doing some charity work. I have been pondering it for a while and decided to actively look at what is local and that I feel I would like to support and also can relate to. I realised there is an aphasia charity, Dyscover, nearby. Not exactly sure what I could help with but they want volunteers and I can relate to the frustration of not being able to say things when you want and either going blank, saying the wrong word, as well as people looking at you like you are drunk.
Or I found out there is a Headway office less than a mile away from Dave's workplace. They support people with all kinds of brain injury.
I also know how that feels!
Both I feel I can relate too, but also both charities should understand if I struggle with the emotional or physical side of volunteering, the trying to get self confidence back that I am worthwhile, dealing with feeling wobbly, tired etc
So I mention it to my family and get told that if I want to get out the house then why don't I get a job? 😕
1) I haven't had a 'job' for over 25 YEARS.
2) I don't want want to work for others. I don't like being told what to do or like how our society works. I don't want to be tied. (Hence why I've only done self employed work for decades)
3) Who the fuck would employ me? (With my lack of skills and attitude to a 'job')
4) I still get tired easy, am clumsy, say things wrong and get muddled.
5) I want to do something meaningful for society (and me!) not just stack shelves in a supermarket, or some other 'no qualifications needed' job. I've done brain dead cleaning and washing up at home for kids for the last 25 years, I want something more.
6) Maybe, just maybe, I would get on well and be offered a part time job doing something I enjoy after, or I could write some articles for them?
I get told that they think it's a silly idea and given all kinds of reasons why I shouldn't even consider it. 😟😭😡
I also mention about wanting to move to somewhere more rural and get told I am "running away" ... ?! 😲
So last Thursday afternoon, massively upset with these feelings that 'no one understands', I finally had (after months of waiting) my appointment with my neurosurgeon, Tim Jones.
I actually thought I might go there alone, so I could fully explain my struggles without family judgement. But after deciding to lay down in the sun before my appointment to relax, I then felt wobbly, off balance and my neck hurt. I didn't want to drive feeling blurry as I don't feel I react properly when I feel like this. So I needed a lift.
I get there and talk to him. But within a couple of minutes, and a couple of tissues from my crying later, he simply tells me:
"I think you have PTSD. I will refer you to neuro psychology"...
I honestly didn't know whether to laugh or cry - as for so long I have asked people for help and support and been told I'm either ok, need to get on with other things, forget about it etc and not once has anyone offered to get me help! 😬
He also listens to my issues and tells me: "Your tumour is out, I haven't had any that have grown back". (And he had no concerns at all, and that my issues are all nerve damage.) He basically tells me I should really try and move on. Get support to do so, (hence why he will speak to the neuro-psychologist) but try and let go of the surgery and move on...
I totally get him.
I have no past I want to go back to..no future career or plan that makes sense...
The only time I'm my life I felt I have actually helped others (except my kids - but 3 of them are now adults!) was in writing my book, my blog posts, or speaking to others on Facebook groups and via my page. Others who are, or have been, where I was, who tell me they have been helped in knowing they were not alone.
I had a purpose - and one far bigger than me.
I explain briefly about thinking of working for a 'brain' charity and he says he doesn't know if it will keep me stuck in the pain of the past by doing so... That I need to move on.
Yes! Maybe this is part of the reason I want to physically move house? To give me new surroundings that don't remind me of having a brain tumour...😔
It's not just my brain craving the peace of more open country since my surgery, for 15 years I have wanted to leave my house for somewhere different. Get out of Surburbia. Now it seems the thoughts are shouting at me... make that screaming... rather loudly...
I so get it.
But to move on with my life?
Moving on emotionally?
Moving on emotionally?
I often see, read and respond to posts on Facebook from others with brain injury or brain tumours. I am held in the past with others reminding me of it daily. Yet it's still current. My body is reminding me of it daily too. It's still very much a part of me. I'm still struggling from the after effects.
So I have spent the last few days thinking 'What do I want?'
What would I do if I didn't have to worry about income or others thoughts?
There is a small part to me that reminds me I love painting... But I have also grown out of love with how painting now makes me feel when I struggle with my vision and hand control. 😢
I love being outside - but I cannot do this in the winter as I get too cold far too easily. 😕
I love writing. 😁
I can do this when I am tired, emotional, energetic or happy. Plus it can help others?
I feel that I 'can' move on while still helping others?
It makes me realize that I have already changed - for the positive. (Even if I have several issues I need to still work on... who doesn't?!😬)
I think I can help others as I have been there.
To hell and back, in various different ways.
Mr Jones said he thought I seemed more upset than I did before my op... But I said "oh no. No way." Back then I was terrified, totally lost and out of control.
Now I am upset. I need to move on, do things for me and get some power back. The tears are knowing I have to change but I don't really know how. They're finding my strength. 💗
I still am unsure if I should stop my Facebook posts and/or not look at volunteering at brain charities. Or if I should continue with one or both of them, knowing how far I've come, knowing the gratitude that I'm no longer there.
Oh and I think my midlife crisis has hit ... I need to find 'me' again... 😳😰😂
"If YOU have any thoughts, experience or guidance on this, then I'd be grateful." 💗