Friday 31 May 2019

Feeling Worthless

Today someone posted an article online about people drinking tap water in bars and restaurants, and how it was ruining business… which I do and don’t understand. As while I can understand if loads of people did this they would have problems, realistically how many people actually drink water in pubs and are not with someone who is drinking? How much does it actually cost them to leave a water dispenser on the side for the few that do? Making the pub suitable for 'all' the people who want to go, not just those who buy loads of alcohol! Plus, if you are an eating venue and most people want to drink water with their meal, then surely you just increase your food prices? 

But I commented explaining the reason I don’t drink paid drinks - is as there is nothing I like available in most pubs or restaurants. I don’t drink alcohol, nor colas, nor the typical fruit juice drinks with loads of unhealthy aspartame, and I don’t want to contribute to plastic pollution by buying bottled water. So as they don’t sell herbal teas, coconut water, natural fruit presse or fresh fruit juice (the only things I drink) … basically, I am left with tap water. (Which is what I mainly drink at home – I’m not just being tight)

I was curious to know how much a pub would think I could ‘donate’ for use of glasses etc and asked them this. (I know pubs legally have to offer you tap water). The reply was to pay the same as someone would for cola etc?! which somewhat confused me as tap water is all but free and they don’t have to buy it like they would cola. The suggestion of £3 a pint seems a bit steep when it’s from a tap!

I offered to pay a couple of quid towards costs, but apparently that 'wasn’t touching it'… so after a very rude "even if you don't come in again I'm at no loss πŸ˜‚" I realised I am clearly not wanted in this particular pub and so won’t be going back. 

No matter that I advertise their pub each time I go there (I advertise Dave’s bands that play in the venue) and people come with us to see the band, talk to me etc. Plus, I am driving which means my husband can have a drink, and we often take another 1 or 2 people with us – also drinking! If I don’t go then Dave will only be able to buy 1 drink as he will have to drive, meaning they will lose more income than if I was there?!πŸ˜‘…but hey ho I know when I’m not wanted…

But today this has made me really upset.

I felt attacked. 

Like I am not acceptable as I don’t conform. (Although I admit I don’t know that I want to conform to pubs either!!) But I thought this place understood me, that I don’t drink alcohol, that I had been ill (and so probably couldn't even if I wanted do), and all the rest… but I realised that belief was bullshit. As IF they cared about their customers, they would have realised that I bring in more money than they spend out on me! 

Not to mention - I don’t spill drinks, get violent or vomit in the loos! Nor forgetting that (at first) I was more than happy to give a few £s towards costs anyway. 

But they obviously see me as worthless to the pub. On the surface I don’t pay anything, and they can’t see beyond that.

Do people think that of me as a person? 
As I don’t work and don’t ‘contribute’ money to society? 

Forgetting that I have raised 4 children, 3 of them adults. Who hopefully don’t need lots of support of health resources as I have brought them up the best I can, two of whom are working and helping others in what they do. Paying taxes. 

A few years before my brain tumour, I was self-employed with Dave helping with his website work  (and we did other self-employed work before that, and before that I was childminding), but a year before I knew about my tumour I stopped working with Dave. My fatigue was getting worse, I couldn’t cope with his work, the house and looking after the kids … when I found out about the tumour it all started to make sense.

My brain, and therefore body, had been struggling.

Last year Dave had to get a ‘proper job’ (as well as being self employed) as he’d lost most of our customers when I was ill as he had to spend so much time looking after me. Although, as he had been here daily since my surgery, I was terrified of him not being here each day. Before we knew he was going to start working there I gradually built up my tolerance to trying to cook dinner each day, managing by myself and not falling asleep. 

Some weeks I can do this OK, as I feel mentally and physically fine. Yet others I cannot. I feel so useless saying can he cook when he has just got back in from work.  At times cooking dinner seems as hard as saying 'you need to climb this mountain tonight'. Its not just the physical energy, it’s the coordination, the planning, the remembering not to burn something and get the timings right.

Even when I do cook if I am tired, I need Dave (or someone) to run through what I am doing. Who wants what and when shall I start it? 

It sounds absolutely pathetic even saying this, 
but the brain blank is just ... well ... blank!

I desperately could do with some extra money, but what do you do when you struggle to wake, still need to rest or sleep during the day.  When I am tired, I struggle speaking and cannot explain myself easily, make loads of mistakes, drop things, get confused, can’t give directions or instructions, or even stay standing up for long ... plus I don’t have any means of transport now and even getting somewhere on the bus uses up much of my mental energy…

I would like to do some kind of voluntary work, which would hopefully lead to an income …somehow. Working with those with a brain injury. I have been there – I understand. But I don’t yet know how...? I love writing and wish to combine the two.

I have been told my book, blog and Facebook page have helped others (I have the loveliest of emails from others with brain tumours thanking meπŸ’œ) But I don’t get paid much for writing - yet!

So, in the meantime, society makes me feel worthless. They cannot see (just like the publican who can’t see I bring people buying drinks to the pub) that I am helping others. Yet maybe if I write a blog post, or give someone else help and support, it means they won’t need another nurse appointment or to see a counsellor, or that I encourage them to eat better and improve their health… even get back to work quicker?

So today I am feeling worthless… and attacked. 

It hurts.


Thursday 23 May 2019

Brain Blank

Just blank.

That’s what I feel today. Blank, worn out and empty.

I can’t remember anything I should or could be doing – well I could clean and tidy every room in the house, but I don’t feel any inspiration nor have the energy.

If I’m doing something, I want to be doing something positive and not just cleaning up after others doing soul destroying tasks. It might not be so bad if I could do them and still have time and energy for more enjoyable tasks, but I don’t, so I won’t.

I know I could set some posts on my Facebook page, or write a blog piece, but I like doing these on my laptop, and well the screen gave up on it last week. (Thankfully Dave saved and exported all my documents, so I haven’t lost any, I just don’t have a laptop)

Somehow sitting at my desk, I find uncomfortable.

The window behind makes it too light to see the screen easily even with the blind closed. The blinds are horizontal stripes anyway and it sends my eyes insane as it is. The screen is too far away, the desk the wrong height, various chairs too high, low or uncomfy. The keyboard is too deep.

Nothing flows. I just type things wrong.

I know I want to write more, help others more. Let them know they are not alone, that its ok to talk. To try and be able to change things…

I’d love to write articles for anywhere that supports ‘brain issues’ - I might contact some of the charities and ask if I can help, but I have no idea what they will say.

I also still want to do a leaflet for hospitals - one that explains all those bleeps, buzzers and bells that terrified me when I was in hospital so that others with sensory issues can learn what they are and hopefully reduce their fear...?

Plus, I would like to have a leaflet available for all leaving hospital after brain surgery, so they know what to expect, and aren’t just left with nothing. Like I was.

But this is far bigger than just me, and I only have the experience of one.

There is also a part of me that would like to go into hospitals and find those who are terrified like I was, to talk to them… but I don’t think I can do it. Physically or mentally. Plus realistically I would need counselling skills to cope and really be able to help, which I don't have and would need to get. But how do you even plan to do something like this if some days you are too tired to even get out of bed?

I also need to earn money. I can’t afford to buy many things I need that have previously helped me, let alone buy any of the things I want…


At 3.30 in the afternoon I am sitting in the garden, where I had been for the last hour or so and feeling shattered. I can feel my brain switching off and the blankness appearing. That horrid empty blankness.

So, I do the only thing I can. Go upstairs and write. Scrawly handwriting where I still don’t seem to be able to remember the correct way to form letters and need to decipher myself after!

But somehow expressing the blankness, the sadness, the anger, the frustration, the tiredness, the not knowing, the low self esteem and the lack of belief, the fact many would see me as useless- without a ‘useful job’ - helps release it with my tears.

At the same time, I know I have helped others go through similar circumstances, written things so they can show their own family their frustrations (as they are the same as mine) supported them when its been tough… 

Each time someone thanks me for my book, a blog post or a comment that I have made,  it helps me too. 

Feeling I have a purpose.

If we all helped others the world would be a much better place.

So at least when I have forgotten what tasks I should be doing - I can just sit down and relax! 🀣🀣

Plus I'm continuing to write... and if anyone else has any ideas - please let me know.  


Sunday 19 May 2019

Cranioversary Celebration!

Last night.

I have felt I needed to celebrate my 3-year cranioversary for over 6 months. It was still such an emotional time for me. Thinking about the events of 2016 still made me cry.

Then not receiving ‘confirmation’ from the Health Ombudsman that ‘the doctors were wrong’ nor getting a decent apology or paying me back for my private costs, still felt raw. 

Like they had gotten away with almost killing me, yet no one even cared. I wasn’t worth it. There was no justice, no closure, no moving on.

So - I wanted to somehow celebrate my ‘second birthday’ the day that meant I was able to live again. 

Do something to celebrate with others.

Organising a fundraiser for St George’s Hospital Charity and The Brain Tumour Charity seemed right - they had both been very much part of this journey.

This last month or so had been a struggle. I am sure my body had all the emotions of three years ago hidden and trapped in its cells. I had the same palpitations that I had before my op (and had these each anniversary after!) My neck I kept moving and then getting odd pains, my head ached strangely and then my scar areas just hurt. 

I even got a couple of colds with coughs that ‘pulled’ my body to accentuate all the head feelings, the aches, the nerve damage, the tension. A spot came up on the top my head to remind me of the pain - in the exact mirrored position of where my nerves were damaged and felt as sore. As well as feeling occasionally like I'd been hit by a bus from all the coughing, which again just  reminded me of 3 years ago with the emotional shock and aching from crying…

Each time a date passed when an ‘event’ happened my body would tell me, and I would re-read my book and match the dates exactly with something- the date I found out, the day I saw the neurosurgeon, the day I went to hospital etc.

Yesterday I read a Facebook memory- and just cried. 

The terror of waiting for my operation that day and that insane fear of walking into theatre…

Not knowing the outcome.

Then Dave saying ‘I’d done it’ as I was being wheeled out of theatre. 

The knowing I was OK.

The feelings were still so raw of what could have been, 
what was, how much it hurt.   

Organising this event partly distracted me, but also it felt like a celebration. 

A healing. 


For a while last night, I felt more than a bit overwhelmed. Trying to organise raffle prizes, balloons, banners. Then music starting, people talking to me. Selling raffle tickets… so for a while I escaped to the garden. Talking to friends and just reducing the amount of stuff going on in my head.

Then suddenly I walked back inside and was sitting next to another friend and I realised it was alright. 

I was having my ‘second birthday’ party, yet it wasn’t about me, it was about the charities.
I don’t even know if others even knew how much I was celebrating, but that was perfect.

I’d all but lost my voice, so couldn’t even talk very loudly or speak through the mic even if I wanted to, and I very much had to conserve my energy and words, or I'd start choking!  I was forced to slow my mouth down so it had to think before I spoke, and I said to a friend:

 “I have now celebrated my second birthday, 
my second chance at life and I feel I can let go of the painful emotions of it now, and just keep the good ones.” 

Suddenly I sat there realising I could celebrate it- the 'new' me... 

The new me was happier than the old one, more trusting, more appreciative... 

Even with the wobbly times, fatigue, tired speech etc… it was ME - and I was fucking proud of myself!

Yes, my soul had been injured, but it was finally healing - I was accepting all of what happened. 

Finding the lowest points mean I can really appreciate the better times.

My parents were there, my kids were all there. I was proud of each and every one of them. Others telling me how amazing the kids were. Feeling like I hadn’t fucked them up after all with having to cope with a mum with a sick brain…

And gratitude.

3 years ago I woke up after surgery knowing something different inside, something that changed me for ever.

And I am more than thankful.


I raised £498.70 on the night and even more online - taking the total to an amazing £723.70!!
£371.70 to St George's Hospital Charity πŸ’œ
£352 to The Brain Tumour Charity πŸ’œ