Monday 12 August 2019


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? 😕

Um ... 

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? 

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. 😕

and ...

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. 
I understand.

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." 💗



  1. Hi! I apologize for not catching your name. I have been dealing with the results of a brain injury I suffered 32 years ago in a MVA. I can identify with your thoughts and feelings you've expressed, as I have been there and gone through it. Mind you, not exactly in the same fashion, but with many similarities.
    I think you have to find a level of acceptance. Embrace your situation, rather than loathe it. Have you ever heard anyone say,"Forgive those that hurt you?"
    By forgiving, you release a burden that is self afflicting. Similarly, by embracing your changes, you will allow yourself to move forward. It is a matter of acceptance, something in which I had struggled with for many years. I still have struggles at times. However by accepting the fact that your life has changed, you can implement strategies to help compensate for what once was easy, but now you struggle with.

    1. Thank you xx
      Yes I think I have had different levels of acceptance since my surgery, at the moment the anger and frustration of it has risen again. Hopefully for new understanding and peace inside.

      I also struggle with 'forgiving those who hurt me' as the tumour was no ones fault... not even mine!(truly sporadic and no one knows the cause) I have no one to forgive...
      I think the lesson is I just need to accept and let go. Move forwards 💗
      Jo x

  2. Also I was wondering if you gave ever had the chance to read the book "Over My Head"? It is a wonderful book written by an MD Dr.Claudia Osbourne, who took part in an amazing cognitive therapy program at the same time I did.
    It's a fantastic accounting of the simple and difficult struggles one goes through after brain injury. Just thought I would mention it to you. Possibly you can read it and find some answers for yourself.
    Best wishes!

  3. Family can be the worst people at understanding us. We think they are going to really know us because they've been around for so long, but they don't. They are really random people in our lives with their own views and values that may not accord with our own. If you want to do something you find meaningful, only you can say what that will be. It sounds like you already know what appeals to you.

    One thought I had as I read what you wrote is that you might enjoy taking a writing (or even psychology) class at the community college to pick up a thread of what you are already interested in. If you wanted to pursue it longer, great, but if not it's a way to connect with others and further your thinking in these areas that appeal to you.

    I'm firmly of the opinion that you can never go back to the past. Humans have to move forward to live. Best of luck to you. I enjoyed reading about your journey. My surgery is still upcoming (not BT, but a cavernoma), so these things are weighing on me.

    1. Thank you. Yes I don't think we can understand another easily, even if we live with them... they all have their own backgrounds and experiences in how they understand a situation.
      it's also hard to explain to them without 'going on' about it 😕
      i might look at some kind of course - thank you - its a good idea and one I had partly looked at before and forgotten about!
      and good luck with your surgery 💗 sending you positive vibes 💗 Jo x

  4. Hi Jo
    I got my scan results Monday and pleased I got the all clear and was told should not come back so regular monitoring for five years then will be signed off. And after explaining all my issues many of which are very similar to yours and I can no longer cope with crowds, talking to more than one person at a time, loud noises and if too much going I breakdown and cry �� covering my ears like a child I now know to be brain overload and am getting referred to have cognitive therapy and see psychologist. I am lucky enough to live in the countryside and would not of got through this journey with out it and my horses and animals are the best therapy �� so my advice to you would be to follow your heart and do what makes you happy and please continue with writing ✍️ I have read your book “all in my head” and it really helped me. Carrie xx

    1. Glad you got good results :) 💗
      I recently spent a few days in a quiet area near a beach and it just convinced me further that the quiet is so healing ...
      i am making do with the newly flown birds and butterflies in the garden for now, but certainly still thinking about what we can change... :)
      so glad the book helped you xx thank you for buying it :) Jo x