December Anger

So here we go…trying to cope with anger, stress, anxiety and depression yet again…

I am feeling angry with me, with life, with humanity… right now SO much stuff in this world is screwed up. From brexit, to tories, to people starving, to all the hate filled ..ism’s, 5G, destroying the planet, vaccines, to the fact people just don’t seem to care (unless it effects them) or only when they see that an animal they like is being hurt! (which 'is' good in that they have compassion for animals- but why can’t they also see the people in the streets or being starved in war with the same attitude? Instead of somehow thinking they ‘deserved it’😞) …

And its all but winter…its dark, cold and depressing and so it makes all of the above seem worse. Every year. For months.

A couple of weekends ago I have no idea where the massive anxiety came from  … but it was horrendous. The only way I can describe it right now is the quote from Harry Potter when Mrs Figg is in the wizengamot ‘court’ over the dementors and she says:

 ‘it was like all the happiness had gone from the world’.  

I thought these feelings had gone since after my brain surgery, so them coming back makes it feel 100 x worse, and that somehow I am failing ...again... 

I am also really wanting to find a way to get money... 

(as while I know people say I should do it alone) I find talking to others, taking supplements, CBD oil, getting craniosacral therapy or bowen or reiki helps me… and I want to desperately try out some neuro work… see if I can get any more of ‘me’ back… but for these I need money... 😕

And ‘I’ would like to make the money. But then I think what the fuck could I do?? I cannot do something where I have to carry things or might drop something or crash into people, I couldn’t do something where I was expected to give a quick reply, and I certainly couldn’t do something that required too much energy… and I don’t have any marketable skill…which leaves…fuck all!

Hardly helping me feel any better about myself…

I can’t do my art as before (not that I even made much money before) and I am trying hard with my book and blog etc … But I don’t know if it’s because I am shit, not many are and will not be interested (after all who wants to read about a brain tumour? well unless you have had one!) or I am doing it wrong. Yet hardly anyone shares things nor even seems to think its worthwhile.

I really appreciate it when others say a comment has helped them, as it somehow helps me too - in knowing I am not alone as much as anything. Plus the fact I 'can' do something useful ...

And I know others say I seem ok. But I don’t think they have any idea how crap some of it is… 

How my hands and eyes feel… 

I ended up trying to pull Roan’s blind up the other day and fucked it up and smashed his dragon figure he made that was on the windowsill 😥 … then trying to glue it back I couldn’t get it together easily as my hands and coordination are so shite… it’s like doing a job with cold hands that are not working properly. I can’t hold it right. I can’t see it right. 

Or peeling veg and I drop the veg, the peeler, cut my finger or my nail… my hands feel like I have weakness and are all curled up. 

My vision changes all the time...

I cannot look at things close up as they go blurry or I still can’t connect brain to area right (like trying to colour in a line, let alone do fine art) Sometimes its ok, others its truly awful. I am trying to improve my sight/brain coordination with doing complicated dot to dot drawings, but I still cannot match the lines up much of the time...

I have no idea why or when it will be good or bad. 

It’s so depressing.

And saying the wrong words… 

I ‘sometimes’ know I am saying it wrong, sometimes have no idea I’m not. Trying to find the words is hard, especially when I am tired. Or giving instructions. Or when I need to answer someone quickly (You should  hear some of the odd greetings I give people when walking the dog and am not expecting to say something! 😳) 

I don’t think people that don’t know me take me seriously anymore, as I sound stupid.

Much of the time I am probably not able to say 10% of what I think as I can’t respond in time or find the words… 

When I am tired I have to say it stupidly slowly and simply… most of the time I am not angry at anyone, or trying to be annoying… I'm just fucking frustrated and depressed. I've been told I sound pissed off, but its as I am pissed off with ME! 

The head symptoms - and the numbness, holes in the head, head and neck pain and itches inside are the easy part quite often… yet supposedly (or so it seems) the only ‘problems’ I should have. The only problems that any one will acknowledge. (apart from others I know online who have had the same tumour and surgery) …

Like the rest are made up, that no one else has noticed I cannot do some things or speak straight…

Today I can type quite well, sometimes I write ‘mroe lik etthis and is drievs me madd’.  

Same as sometimes I am exhausted all day and yet others I can stay up till 1am, even after doing things all day with no problems. 

Some days I feel grounded and balanced, others that I am all but bouncing off walls again. And feeling wobbly and shaky inside.

I never know what I am getting…so how can I plan anything??

Some days I am so exhausted and low and thinking I am going stupid I don’t think I will ever get old… just grateful that I have managed 2 more years than nature would have given me…

I don't know if many people can actually appreciate and know how shit this feels?? Not just that I ‘should’ be dead … but that my mother is probably fitter than I am… and my brain is more fucked too.😭😭😭

Then this past week or so has been the pits. ‘I’ am the one who can’t go out anywhere easily. As it is too exhausting or anxiety provoking, or we don’t have the finances. I don’t have the energy to look after me some days let alone our children…. And then I hate myself that I am not there when I 'should be' for them. Or as, like everything else in my life, my memory had gone out the window and I have forgotten… 

…yet even if I remember. With what fucking energy do I do things? My last bit? Do I destroy myself in looking after the kids better??  I had to force myself to get out of bed today…the last thing I needed is reminding how shit a wife and mother I am…

…but sometimes, just sometimes it would be nice to feel good about me, and what I am can do. That others appreciate me and not just because I manage the washing and cooking that day ...  but that I have been productive and useful.  

Plus ... I would love to be on top of my anxiety and the stress of going places, being the responsible one who feels strong and healthy and doesn't have to worry that she will suddenly trigger something.

Fear that the exhaustion and fatigue will hit and I want to sleep when instead I have to get home, that the dizziness or brain fog will 'paralyze' me with fear. To be able to relax and have fun and not keep worrying what is up...

That I control my body, rather than my body controls me...

 

Even Trees Wobble

Several days ago I saw a fundraising post online about someone who also had a Hemangioblastoma and the headline:

“Now, 10 years on, she feels it is as if the experience never happened.”

As well as her words:

“I feel like it’s as if it never happened. I feel the same as before I started to be unwell and I feel so very lucky to have survived a brain tumour”

And whilst I fully relate to the lucky part... I am nowhere near feeling the experience never happened.

Every day, several times a day, I am reminded about my tumour. With various pains from my head, tightness, pulling in my scalp, itching, my neck feeling tight, blurry eyes, foggy numbness of my right side of head and behind my right ear, feeling wobbly, doing something uncoordinated, feeling a bit spacey. Plus all the other daily and exhausting neuro-fatigue issues. The ones I am not ‘supposed’ to have.  

Plus its winter, which is never an easy time for me as everything feels it is shutting down, dark and cold. So when I am already struggling I start to overthink again … Will I always have these issues? Will I ever feel properly balanced again? Why is the hole at the front of my head aching more now? And why is it so wide? Why do I even have it? The gap between the sides of my skull bone I now feel are a fingers width! It's not even where my tumour was. Was I this bad last year? Am I getting worse? Will I recognise if I have signs of the tumour reoccurring again? Will it reoccur? Could I cope if I had to go through this all again? … my healing going back to the start ..?

I don’t want to walk the dog, I don’t want to walk alone, I feel wobbly. It reminds me of those months of feeling ill and everyone saying I was alright … trying not to panic several times a day as I wobbled, or did something that felt wrong and feeling like I was drunk or in another place. The fight or flight reflex constantly sending jumbled messages that my brain couldn’t cope with.

I feel the wobbliness is just inside me, a feeling I have - as no one else notices it. Or they are too polite to say? But then they didn’t notice until I was very ill before …

I try and think, have I really been better since surgery, or is it just the same type of reaction but I am struggling with dealing it today? And I remind myself that in the summer I went out many a time feeling wobbly and wondering if it was as I was too hot, last winter I had to keep the hood on my coat up as my head couldn’t cope with the cold wind. I remind myself of these posts I wrote about my surgery side effects. This one written in December last year saying I have been struggling for the last few weeks and this the following February. Not much has changed, I could have written them yesterday! 

 

In theory with my type of tumour it is out and gone, and it is unlikely it will come back, but if it does it's not much point me worrying about it. I knew last time it was more than just anxiety, I am sure I would know again. Plus there was nothing showing on any of my scans since surgery, the last one being only 6 months ago – I just have to question my logic. Where I have seen 1+1 = 3, but I haven’t stopped to check and count! To stop worrying and make the best of what I have. I will just have to hope that in 7.5 years I too will feel like its never happened 💜

So I walk the dog, fuck it if I am wobbly, it’s not that ‘brain spinning’ dizziness or the wobbly after surgery when the world constantly moved and I got travel sick from just looking at things. It’s just a day where I wobble, similar to many in the last 2 ½ years…

After I do a couple of laps of the park I feel I have lost much of the wobble, being able to walk when I don’t need to follow a ‘path’ is much easier than walking through people or along a narrow footpath. Then as we are about to leave the park I hold on to a tree there. I often sit on one of its low branches and ground myself connecting to the earth, but today its really wet and so I just lean on it instead. As I am leaning I think I can feel this branch move, swaying in the wind, or is it me moving inside again? I lean a bit more and with another gust it once again moves. This big tree with thick branches is moving in the wind, it's wobbling. Its top half sways, but it still has roots firmly in the soil. Grounded. Today just realising a tree does the same, its top half sways and yet it is grounded, is enough.