It's a LONG Recovery...

It is now almost 3.5 years since my surgery to remove the tumour, yet I only just feel I am getting my health back.

I admit I have had for years a bit of an exercise phobia as well as health anxiety which had stopped me doing what I thought was 'too much' for many years. Then about 10 years ago I was diagnosed with chronic fatigue. Not really any answer or what to do about it, but it somewhat helped to have a label as a way of explaining to others. 

It never felt right though.

So in 2014-15 when I was really struggling with my health and energy and could barely manage more than basic tasks, it just seemed I was getting worse. I limited myself to one task a day. If I went shopping I didn't do it on a day I also took my son out. Everything was planned so I didn't run out of energy.

In 2015, after a meltdown, I decided not to help my husband with his self employed business as I just couldn't manage it all. Not that I was doing a lot to start with. 

That year gradually got worse. If I did too much I'd need to rest for a day or so after. Then gradually the feeling I was 'not quite right' started, quickly changing in 2016 into feeling a bit wobbly and off balance, then into feeling downright drunk (Even though I am teetotal) Not to mention the strange shooting pains in my neck, going into my head - like someone flicking an elastic band at me ...

By January 2016 I was almost sofa bound. I had been told by doctors, physiotherapists and osteopaths that I needed to rest my neck, that this should stop my dizziness. So as the headaches started I just stayed there more, to the point that some days I could barely get out of bed from the pain. Needing to have a routine just to be able to sit down without it feeling like my head would explode. 

Yet the doctors still didn't think there was anything seriously wrong. Although I did get referred as non urgent to a neurologist for in another few weeks time.

By the time we gave up with the NHS and I had my private MRI, I weighed 8 stone 7. I felt like I was too skinny and ill. This was the day I was told about my tumour. The chronic fatigue finally made sense! 

Just over 2 weeks later at my pre op appointment I weighed 7st 13. 

I was wasting away. 

I was told to fatten myself up. But as I didn't have much appetite I just ate loads of chocolate!  And I did get to a pound or so over 8 stone the day before my op. 

This picture was taken on the 15th May, 

the day before I went to hospital. 

Even though I only spent 4 nights in hospital in total (2 before and 2 after surgery) by the time I came home my legs were so thin that when I looked at them my shinbone was sticking out as the rest of my leg fell away from the bone. It was horrid.

I had so little energy.

It took me over 3 months to be able to walk a short lap around the park with the dog again. I couldn't even manage to carry a washing basket upstairs. When we went to the beach it was as much as I could do to walk through the sand to get to the sea. I was shattered after, needing to sleep.

For the rest of the year I still had to rest after I did anything, even just walking the dog. 

However in March 2017 I decided I needed to challenge myself to get fitter, plus also challenge my belief that I couldn't exercise. So I tentatively started to go in the outside gym as I finished the dog walk. I knew I looked pathetic so I tried to go there only when no-one else was there. Thankfully it often was!

 

One exercise machine I could barely even lift, as it hurt my neck so much. Well I managed to lift two! 😂 Three of the others I could only do between 10-15 repetitions and I was shattered, although I did manage 30 on the leg press! I could only manage this and then had to come back home to rest, feeling my brain was shattered as well as my body.

Anyway ... Despite wondering why I kept it up, hoping that at some point I would get the benefit of being fitter- and not just far more exhausted, I continued with using it whenever I could. Yes I missed whole weeks at a time, but even in the winter I tried by putting a plastic bag over the seats so I could use them when they were wet. 

The fact my collie dog Enzo is a creature of habit and walked into the gates of the gym each day without asking probably accounts for most of the reason I went! 😬

Anyway... This summer I have finally noticed the positive side effects. 😊 

I felt muscles in my arms!😂

Not only that I no longer get so shattered after doing almost anything - my body is fitter from the exercise and no longer constantly reducing my limited reserves. 

To some what I do is still useless and laughable, but I know how much better I am, and where I started from. I am now able to do 100 repetitions of each of the 3 arm exercises, and the one I could only 2 of I can now manage 20. 😁 A 10x increase is not bad! Plus I have almost a similar % increase with being able to use the various other weights, 'twisting' waist toner or my time and speed on the cycle machine.

I have for the first time in my life muscles that I can feel, and almost see, in my arms. The habit of making myself go there has finally become almost pleasurable! 

So many times it would have been FAR easier to stop...

But for someone with chronic fatigue for years, brain surgery and losing most of my muscle mass and weight from being stuck on the sofa for six months ... I am proud of myself. 😇









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Guidance & Path Finder

I have had an emotional weekend. No, make that a funny few weeks with emotions coming up in every part of my life to be sorted. It has not been fun, or easy...although I have got to the point I cannot handle things as they are and so sorting them needs doing...

It started with not even getting an interview for a (brain) charity position I volunteered for.

Where I said the reason I was applying was as I was a brain injury sufferer (as was one of the requirements they wanted) and want to change things, giving details of what I had written and done since my surgery.

I was offering my time for FREE and did not even get an interview! 

How's that for helping you feel you are useless?!

Then I went to a local holistic event yesterday. I'd totally forgotten about it, but it popped up on my phone so I decided to go along as it felt right.

After I got there I walked to the 'workshop' room and was chatting to a woman there waiting - who just happened to be presenting. It was very interesting as her talk was about how the brain can be reprogrammed, and how negative self talk harms our brain, and with it our health...

Which, coincidentally or not, I have been actively trying to just observe and listen to myself these last few weeks...

Part of what she explained was how you would never speak to a friend with the negativity you say to yourself, yet most of us to this and never even question it.

& I realised I'm the worst friend I'd ever have...

Plus I very much need to remember these words:

"I am enough."

Anyway a while later I walked past this same woman at her stand and chatted about part of my cerebellum being missing and does she think the therapy she does would still work? How I feel that my belief and emotions have got more negative since a year or so after surgery.

Directly after my operation, I was sure my cerebellum would be able to re route all the damage - as after all the cerebellum has the most neurons in the brain, therefore giving it the most chance to reroute itself easily.

Now I just feel I have a chunk of brain missing, and a part of me went with it...

I struggle with things because of it, can't easily do the things that used to bring me joy.. and no one cares or will help me try and improve it.. I am stuck by myself.


She showed me a metaphysical meaning book "Metaphysical Anatomy" that was much more detailed that others I had read in the past and when I read the brain tumour personality description I could only agree with most of the words... this was me to a tee..  
I'm buying a copy ASAP!!
 
For some reason I started talking to her about the fact that after my surgery, I felt I could do something. I had a purpose in being able to help others go though a similar experience. So I wrote a book, blog posts, articles etc to help them, as I felt better than I ever did before... plus I could earn a few £s with it, so it would work both ways ...

...but nothing much is working. I don't get much of an income, only a handful of people a year say anything has helped. 

Much of the time I don't even know if it has helped anyone as I dont get any comments...so is it even worth it?? (I totally appreciate that when you are struggling with your own health and life, thanking others is way down the list of things to do!)

Then I mentioned what my neurosurgeon advised me about not doing any more work with brain charities etc and 'moving on with my life'... and well maybe the universe is telling me this too when I didn't even get the volunteer position?! That I need to do something else...but what???

...just what...?

My enjoyment of art, painting and drawing, is gone as I cannot see or coordinate to paint or even to do a dot-to-dot or colouring book as I once could...
Crochet is a struggle while feeling my hands are vibrating and doing the wrong thing...
How do I manage sewing, embroidery etc when I struggle to even thread a needle?..
My hands feel useless when I even put on my jewellery, let alone try to hold it to make any...

I know people can learn all sorts of new skills... but I am too scared to try again and I know I struggled to even sell things last time, when I could do them easier and better, it just seems pointless even trying now.

She said to me that maybe I will get a new path showing soon, just continue doing things that feel good. 

That, yes, my surgeon was right in that when you keep focusing on the worst thing that has happened to you - your body cant ever let go. You are reminding yourself daily. Subconsciously telling your brain negative messages again and again.

Exactly what I do daily...

I need new messages. 

I wandered away, looking round the rest of the holistic stalls, letting myself be drawn to whatever felt right. I had wandered round most of them, none feeling like it was anything that would be right for me, what I needed now.


Until I got to a stall by a company called Healing Forest where they had the most amazing smelling products made of Palo Santo and pendants made from this wood.

They all were lovely in their own way but  I was drawn to one engraved with a wolf paw - the sign next to it saying

'Guidance & Path Finder'. 

But the pendant shape was oblong and looked too a bit too masculine. I asked if they had it in other shapes and sure enough they had another one in an oval - perfect.  I ended up buying some essential oil & natural incense sticks from the wood too.  It was only after I realised the oil is used for anxiety, depression, headaches and emotional trauma... 

I am now trusting I get the guidance I need. 

When I got back home, I looked up the book on Amazon, and sure enough it has loads of great reviews. But also written by the author is another book "Finding Your Own Voice, Your past can control who you are, until you find your own voice" ... I might be looking at that book too! 

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Depression, Anxiety and No Tribe

Sometimes when I really need something, it just kind of appears in my life. A few weeks ago someone mentioned the book 'Lost Connections' as an amazing read, so I added the book to my Amazon cart. A few days later I received a voucher, so I ordered the book for free.

I spent the next couple of days reading and understanding what he was saying in it... and thinking how life would be so much different if we had financial stability, a different society, a group of people to support us. A tribe.

A couple of weeks after I finished this book, I see this TED talk from the author Johann Hari. It simplifies much of what he said in his book within 20 minutes.

I wonder what it would have been like if someone was there to support me before, during and after my brain surgery? Would I have felt so scared and traumatised if I was able to talk to others about my concerns and them answering from experience?

This was the reason I wrote my book, 'It's All In My Head', and have continued to try and post articles on my Facebook page, keep writing this blog... in the hope that it would help others when they are facing a similar situation in the future.

Yet I know it hasn't reached anywhere near as many people as it could have. I don't have the connections, the support or the money...

And somewhere in this feeling I still can't be useful, the depression and anxiety are back.

I had a honeymoon period after my surgery where the anxiety and depression I have struggled with since a teen, seemed to have been taken out with the tumour... but they've crept back. It feels harder to cope with at times as I know it stopped and fully wonder if I did something for it to return. What did I forget? What changed in my belief system for it to return? What's causing me to be stressed?

Reading this book and watching the TED talk makes me think it's probably just as my life went back to 'normal'...

When you are ill, you are allowed to cry. To be sad, angry, or release whatever emotion you feel. As I wrote in my blog post on 19th December 2017:

 "A brain tumour made it understandable. Acceptable. OK. I was allowed to feel whatever emotion I needed. 

Justified."

People were there. (Although not Doctors or medical support... but that's a whole different story!) Yet I had more support than normal, a tribe where I felt wanted and worthwhile. People who wanted me to get better, and who listened to the frustrations of it all. Friends brought presents, sent messages or even just give you their time and visit.

"No one tried to talk me out of crying, tell me it was my fault... friends sent healing and support, offers of help,
my husband just held me." 

What happened since?

That support stopped.



People think its all over and I'm better now. I look well. I don't cry all day. (Well not in public!) My tumour is gone. No one really understands how frustrating the side effects are. Feeling trapped in what I can do to change things. Both from my tumour side effects, as well as my life in general.

People get back to their own lives, their own family, back to our society of making money so they can survive.

Society feels so broken in so many ways. 

After reading this book and talk, I wonder what it would be like if someone 'bought a cow' for me now? When I really need support to feel useful and connected.

Is it as Johann Hari says: 

"Depression is really just human beings with unmet needs"? 

A signal of something much more? 

I still have a way to go...

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