I got a brain box this week from brain trust, it's full of brilliant information, a fantastic book and a packet of tea bags. It seems like a lovely gift that I could have done with months ago, the things you learn as time goes on. Thankyou though to the brain trust for this fabulous gift. I also saw today that my local bus company are supporting brain tumour research, it was the weirdest surprise to see posters all over the bus. The other passengers must have thought (again) what a lunatic I was taking photos of all of the posters, which are now on my facebook to raise more and more money for brain tumour research, it's startling to know that only 1% of money raised goes towards brain tumour research which also kills more than any other cancer to children and adults under 40. Startling and sad to me anyway. I want to do something to raise money for this so I am looking at a sponsored walk by myself, 150 miles in a month. Hmmmm that seems more than doable :)
I've had yet another PIP assessment this week, they apparently don't have enough information, I think it's more likely that the lady who came was too positive towards me and my claim, so I had the huge list again for my brother, every time we have to do this it bring me to tears as a reminder of how my life has changed and what I have to do every day to protect myself. On that note though I am proud of how far I have come and what I have to look forward to, I just don't wanted to be reminded every damn week!!!
So the battle starts again, I feel stronger and more in a position to take on the establishment that caused me so much distress at the beginning of this bloody PIP business. We finally got the reason why I had to have another assessment. The second assessment was such a huge difference to the first that they had to check it. I explained to the lady who did the third one that the reason of the difference was because the first assessment was by a horrible man who brought me to tears and a seizure and completely lied on his whole assessment. So where I had not accepted it but shelved the companies standard apology I am now ready to go to war. That made me miserable and frightened for a lot longer than I needed to be. So let the battle commence. My MP asked me what conclusion I wanted to see, obviously hung, drawn and quartered isn't really an option in the western world anymore, what about bringing back the witch drowning? or maybe even beheading????? No then a proper apology, all of his assessments to be evaluated and a full employment procedure, let the bastard know what it feels like to be thought of as I liar. Aaahhhhhhhh I feel better now and breathe :)
My final news for this week is that my light has been switched on and is beautifully bright. Not only am I starting up my hypnosis and meditation website and soon to start classes. I have been offered a job with a new apartment included. I am going back to the tourist industry, which I know, love and am really good at. It's staying in my home town, in a fabulous seaside location with a fabulous apartment. I will be able to do both businesses side by side. They say everything happens for a reason and it seems my tumours reason was to put me in a new direction, Amos has caused me hell but he has also taught me that life really is too short, quite often so are memories so I am making as many as I can. Dump the idiots who drag you down and stick to the people that lift you up, make you feel great, make you laugh. He gave me the time to study things I've wanted to do for years and complete them. Amos (Hmmmmm I can't believe I'm actually talking to my dead brain tumour!), thankyou for making me realise all these things, you are not invited back but thankyou all the same.
In all honesty, if you're reading this and fancy giving some meditation or hypnosis a try, message me and I will happily send you a free recording of what you would like.
Have a great week
Wednesday, 9 May 2018
Saturday, 5 May 2018
WTF???
OK so it's time to get working and getting a website built, I honestly haven't got a bloody clue what to do, I get started, think I know what I'm doing and then spend 3 days stuck, seriously WTF
The do to list
Build a website - I thought I knew how to do that
Link it to my blog (here) - Not a bloody clue how to do that
Get the shop (for meditations and hypnosis recording available onto) - Not sure how to do that
Record 300 hypnosis sessions........... - I know how to do that, thank goodness
Get the affiliates (the companies I want to advertise) to work with me - I don't know how to do that
Get the affiliates listed on the blog - No idea
Get payment methods added so my new customers can pay for stuff - hahahaha, I don't know how to do that either
I think I might need some help
On the flip side, my local bus company is supporting brain tumour research, completely stopped me in my tracks to have that bus stop for me when it was unusually 20 minutes late. It stopped me having a winge at the stressed driver, stressed because it was a really really busy bus. The other passengers must have thought I was bonkers (no change there then) when I was snapping photos of all the posters. I am now getting in contact with the bus company to try and organise a fund raising thing to work with them and raise some money for brain tumour research, It's heartbreaking to know that of all monies raised for cancer only 1% goes to brain tumour research. More children die from brain tumours than any other cancers, more adults under 40 die from brain tumours than any other cancers. What a miserable thought that we know all about the breast cancers and prostrate cancers, the lung cancers and just about all other cancers but not brain, I don't understand how this works and it makes me miserable to think about it so I am stopping now and getting back to doing the thing that I haven't got a bloody clue how to get started. If that doesn't addle my brain it's a sign that I'm definitely on the mend
The do to list
Build a website - I thought I knew how to do that
Link it to my blog (here) - Not a bloody clue how to do that
Get the shop (for meditations and hypnosis recording available onto) - Not sure how to do that
Record 300 hypnosis sessions........... - I know how to do that, thank goodness
Get the affiliates (the companies I want to advertise) to work with me - I don't know how to do that
Get the affiliates listed on the blog - No idea
Get payment methods added so my new customers can pay for stuff - hahahaha, I don't know how to do that either
I think I might need some help
On the flip side, my local bus company is supporting brain tumour research, completely stopped me in my tracks to have that bus stop for me when it was unusually 20 minutes late. It stopped me having a winge at the stressed driver, stressed because it was a really really busy bus. The other passengers must have thought I was bonkers (no change there then) when I was snapping photos of all the posters. I am now getting in contact with the bus company to try and organise a fund raising thing to work with them and raise some money for brain tumour research, It's heartbreaking to know that of all monies raised for cancer only 1% goes to brain tumour research. More children die from brain tumours than any other cancers, more adults under 40 die from brain tumours than any other cancers. What a miserable thought that we know all about the breast cancers and prostrate cancers, the lung cancers and just about all other cancers but not brain, I don't understand how this works and it makes me miserable to think about it so I am stopping now and getting back to doing the thing that I haven't got a bloody clue how to get started. If that doesn't addle my brain it's a sign that I'm definitely on the mend
Saturday, 28 April 2018
OMG I've actually done it
Omg I've done it
Hi,
Many thanks for sending your exam papers and recording.
We have now carefully assessed these and are happy to congratulate you on gaining your Diploma in Hypnotherapy through Hypnotic World.
Your diploma and membership certificate to the PHPA will be posted to you next week.
We listened to your audio recording and this was very nice; your tonal delivery and pacing were good and you left appropriate pauses where necessary. I'm sure your clients will enjoy listening to you.
This was part of the email I got this week and I am ecstatic. 9 months starts here. In 9 months I am now a qualified meditation instructor, a qualified natural therapist and now a fully qualified hypnotherapist. I literally can't believe how much I've achieved in what has been some of the shittiest and most frightening 9 months of my life EVER, but I've done it.
Now the work starts, my list is long and hilarious, I'm not really sure where to start. I need to get my website built and up and running, record my free to download meditation sessions and my purchasable hypnosis sessions. Get my website linked to this blog, I'd like to say my amazing blog because I really do love it so much, I love the writing time and my readers comments. I want to link all these to my favourite companies that I mention on here too, I really don't know how to do that and get paid for it! Then there's the advertising, I don't really know how to do that either. Then I want to start doing meditation classes, free to start with for hospital staff, they work so very hard and I'd love to give them something back to teach them to relax and be calm and I have to think of my business name!!!! Not sure what that's going to be yet.
So my friend was right when she said the miracle 9 month mark, this is the start to my new normal and I am excited, I didn't think I'd be saying that anytime soon.
Hi,
Many thanks for sending your exam papers and recording.
We have now carefully assessed these and are happy to congratulate you on gaining your Diploma in Hypnotherapy through Hypnotic World.
Your diploma and membership certificate to the PHPA will be posted to you next week.
We listened to your audio recording and this was very nice; your tonal delivery and pacing were good and you left appropriate pauses where necessary. I'm sure your clients will enjoy listening to you.
This was part of the email I got this week and I am ecstatic. 9 months starts here. In 9 months I am now a qualified meditation instructor, a qualified natural therapist and now a fully qualified hypnotherapist. I literally can't believe how much I've achieved in what has been some of the shittiest and most frightening 9 months of my life EVER, but I've done it.
Now the work starts, my list is long and hilarious, I'm not really sure where to start. I need to get my website built and up and running, record my free to download meditation sessions and my purchasable hypnosis sessions. Get my website linked to this blog, I'd like to say my amazing blog because I really do love it so much, I love the writing time and my readers comments. I want to link all these to my favourite companies that I mention on here too, I really don't know how to do that and get paid for it! Then there's the advertising, I don't really know how to do that either. Then I want to start doing meditation classes, free to start with for hospital staff, they work so very hard and I'd love to give them something back to teach them to relax and be calm and I have to think of my business name!!!! Not sure what that's going to be yet.
So my friend was right when she said the miracle 9 month mark, this is the start to my new normal and I am excited, I didn't think I'd be saying that anytime soon.
Monday, 23 April 2018
9 months and a new dog?!
I've just realised I'm now at the magical 9 months, this is the 9 months where aparently things magically start to change for the best and better. Fingers crossed
I've got a dog! My daughters thought I needed some company and a reason to get out, to be honest I don't need a reason to get out and I am very happy with the company I have but I have gone along with them and have welcomed 7 year old Luna into my tiny home. She is very sweet and so far is settling in nicely, we have gone out for walks (which I did anyway) and met some of the neighbours and their pets which was nice. My step count has gone up massively from my daily 10,000 to about average 18,000.
I'm still taking my CBD oil and honestly am feeling a million times better, I don't know if it's the healing or the vitamin c or the cbd but whichever it is I am happy. I had another look at the health benefits of turmeric, I make a latte with my turmeric and coconut oil which I do most days and I do actually enjoy it as my afternoon cuppa. On my reading I've come up on some reading on the epilepsy foundation and have come up with some research that I didn't expect to find that there is a possibility that turmeric and it's curcumin can help with seizures, now that is truly incredible, below are the links for a read. I am making mine in my nutribullet, half a teaspoon of Lucy Bee turmeric (because it has ginger and black pepper in it and I know it's 100% natural) and I have this with boiling water and a teaspoon of coconut oil, nutribullet it for 8 seconds and it's a latte, sometimes I add cinnamon to it, sometimes I don't just for a bit of sweetness.
https://www.epilepsy.com/connect/forums/medication-issues/curcumin-tumeric-and-seizure-control
https://www.ncbi.nlm.nih.gov/pubmed/20840851
I am now off the happy pills, I don't miss them because I'm guessing they've been replaced with the vitamin b and that's good news for me. That's 2 lots of chemicals, only got the keppra now and that's going to take a while longer depending on whether or not I am going to have any seizures. Speaking of which, I am now longer than my diary from last week on my gran mals, fingers crossed this is going to last longer and longer. I had to speak to my GP this week and she wanted to take a blood test to check out my vitamin b, I had to ask her what her thoughts on regarding medicinal cannabis, her response was as expected that she could not have a view, of course I had to tell her I am taking it because it will probably come up in my blood test that is a useless process because I'm already taking vitamin b and it's already helping, I don't feel like burdening the NHS more than it needs to be burdened.
I am aiming to live as much a chemical free life as possible, I feel I am becoming the best that I can as an environmentalist, I don't use plastic bags I have got rid of most of my chemical cleaning products and am in the process of replacing them with my fabulous new steam cleaner (yes the TV shopping is still continuing), I literally love my steam cleaner, my bathroom is a sparkling gleam with not a chemical cleaner in sight.
I am back to studying this week and this time I am learning about mindfulness, I've not looked at this before so I am going to a class tomorrow, a nice quiet class with a nice quiet friend to see how this can be used to further my future career. I am also looking at the future of this blog. It's a tough thing to learn about how to increase my readership but I will continue. It was recommended the other day by a reader to turn this into a book. I don't feel it's ready for that yet, I want to be able to talk about the keppra some more.
I am another week free of seizures and dizzy spells, up on my workouts and all in all feeling pretty good, even though I had to tell my grand daughter twice last week to stop talking because she was wearing my brain out. Bless her, we rested watching grease the movie.
At this point dear reader I am going to sign off and get some work done with my studying, I've been soooooo lazy the past few weeks it's now time to pull it together and get some reading time in.
Have a great week and healthy, happy wishes to you all :)
I've got a dog! My daughters thought I needed some company and a reason to get out, to be honest I don't need a reason to get out and I am very happy with the company I have but I have gone along with them and have welcomed 7 year old Luna into my tiny home. She is very sweet and so far is settling in nicely, we have gone out for walks (which I did anyway) and met some of the neighbours and their pets which was nice. My step count has gone up massively from my daily 10,000 to about average 18,000.
I'm still taking my CBD oil and honestly am feeling a million times better, I don't know if it's the healing or the vitamin c or the cbd but whichever it is I am happy. I had another look at the health benefits of turmeric, I make a latte with my turmeric and coconut oil which I do most days and I do actually enjoy it as my afternoon cuppa. On my reading I've come up on some reading on the epilepsy foundation and have come up with some research that I didn't expect to find that there is a possibility that turmeric and it's curcumin can help with seizures, now that is truly incredible, below are the links for a read. I am making mine in my nutribullet, half a teaspoon of Lucy Bee turmeric (because it has ginger and black pepper in it and I know it's 100% natural) and I have this with boiling water and a teaspoon of coconut oil, nutribullet it for 8 seconds and it's a latte, sometimes I add cinnamon to it, sometimes I don't just for a bit of sweetness.
https://www.epilepsy.com/connect/forums/medication-issues/curcumin-tumeric-and-seizure-control
https://www.ncbi.nlm.nih.gov/pubmed/20840851
I am now off the happy pills, I don't miss them because I'm guessing they've been replaced with the vitamin b and that's good news for me. That's 2 lots of chemicals, only got the keppra now and that's going to take a while longer depending on whether or not I am going to have any seizures. Speaking of which, I am now longer than my diary from last week on my gran mals, fingers crossed this is going to last longer and longer. I had to speak to my GP this week and she wanted to take a blood test to check out my vitamin b, I had to ask her what her thoughts on regarding medicinal cannabis, her response was as expected that she could not have a view, of course I had to tell her I am taking it because it will probably come up in my blood test that is a useless process because I'm already taking vitamin b and it's already helping, I don't feel like burdening the NHS more than it needs to be burdened.
I am aiming to live as much a chemical free life as possible, I feel I am becoming the best that I can as an environmentalist, I don't use plastic bags I have got rid of most of my chemical cleaning products and am in the process of replacing them with my fabulous new steam cleaner (yes the TV shopping is still continuing), I literally love my steam cleaner, my bathroom is a sparkling gleam with not a chemical cleaner in sight.
I am back to studying this week and this time I am learning about mindfulness, I've not looked at this before so I am going to a class tomorrow, a nice quiet class with a nice quiet friend to see how this can be used to further my future career. I am also looking at the future of this blog. It's a tough thing to learn about how to increase my readership but I will continue. It was recommended the other day by a reader to turn this into a book. I don't feel it's ready for that yet, I want to be able to talk about the keppra some more.
I am another week free of seizures and dizzy spells, up on my workouts and all in all feeling pretty good, even though I had to tell my grand daughter twice last week to stop talking because she was wearing my brain out. Bless her, we rested watching grease the movie.
At this point dear reader I am going to sign off and get some work done with my studying, I've been soooooo lazy the past few weeks it's now time to pull it together and get some reading time in.
Have a great week and healthy, happy wishes to you all :)
Wednesday, 18 April 2018
Hair, body and mind
My hair is growing thick, long, strong and curly. I have always had thin, straight hair so this is different. I do love my new hair growth but honestly right now I resemble my Dads hair, curly quiff!!!
I feel awake and alive and I'm loving it, still I know not to overdo things but really I'm genuinely feeling great, so much that it's time to think about holidays woohoo. I'm hoping to go and stay with friends in sunny Spain in August, a bit (or a lot) of sunshine, some pool and beach time and some natural brown legs and not the fake tan, although it has to be said the fake tan is doing me proud for now, thanks skinnytan :)
I have bought myself a present proskins leggins and a top, this stuff is meant to be brilliant for skin firming and anti cellulite. Now I am lucky that I don't have any cellulite, well not that I can see anyway but I do have the baggy arms which I hate and I would like to firm my belly (I know I know wouldn't we all) but this stuff has great reviews so when I was given a cash gift from a friend I thought it was a good opportunity to spend it on these really expensive leggins and a matching top. Supposedly wearing them for 8 hours a day will improve my skin complex and work towards toning my baggy areas. The weirdest of it is it doesn't need to be washed for 2 weeks, honestly I'm not sure how I feel about that. I felt bad enough when we had the snow and I wore the same pyjamas for 3 days!! But these come highly rated by QVC (yes I am still shopping from TV, I think I might have developed a bit of a problem) and a few very good looking sportspeople, so I will wear them constantly, yes I might never take them off, they are really comfy.
https://proskins.co/
Now for any gentlemen who may read this I want to apologise in advance for this next paragraph, skip ahead, honestly it's a womens thing! Since I had my youngest (now 27 year old) daughter I have had a monthly boob/breast issue! I had mastititis after she was born and have got it during my period ever since. As a result of this I have the depo injection every 3 months, it stops me getting a period and therefore stops my boobs swelling up massively painfully and feeling like very heavy bullets. I've read (honestly I have) about how hormones like the injection and other forms of contraception can be another cause towards our tumours, whether or not this is true I honestly don't know and I don't believe that anyone really does. But, I have decided that it's time to stop having the jab. I only realised this morning that I'm now two weeks overdue my injection, usually at this stage of lateness I would be struggling with my sore and swollen boobs but I'm not. They are still soft and normal (I'm so sorry you are having to read this, I am literally sharing my whole life). Now whether this is just a coincidence or it's the vitamin b or the cbd I have no idea, but it's (fingers crossed) one less chemical for my body to have inside it and that makes me very happy.
I also know that now I am feeling not so urgh all the time, definately thanks to the vitamin b and the cbd oil and cutting down the anti depressants, I want to get back to some fitness, I still can't do the gym because I still can't stand the noise so it's home working out that I'm on and I am doing a little more every week and loving it. Still being careful to modify so as not to knock myself out with a dizzy spell or seizure!!! Sooooo I'm on Beachbody Piyo, definately my favourite, I don't do the drench and other long workouts but the core and buns are perfect for me. I do Oxycise, this is brilliant breathing, great for a wake up if I've had lazy days. The firm fitness has been this week, slim in 30 is bloody hard so I really have had to modify everything but I love that I'm being able to do more and more.
I am determined to look bikini fabulous, well as bikini fabulous as a 40 something year old grandmother of 2 and brain tumour survivor can look. Actually that little lot makes me bloody amazing :)
My thoughts are clearer, I have been so good at forgetting the words I want to say or write, until the last few weeks I would just give up trying to remember the word but I have learned that if I stop, breathe and consider the word comes back to me. It's amazing. I wonder if I am going to be my old self again or even just a different version of myself. Either way I am happy, I have a great future to look forward to and things in the pipeline. Maybe I'll turn this blog into a book when I'm off the meds and the seizures stop (notice I'm now saying when and not if), what do you think?
So all of the positive stuff I've written and then this morning I looked in my diary and I am due a gran mal, I know I need to stop thinking about it and stop worrying about it but it's there gnawing away at the back of my head and I am scared and I am worried and what if all this good stuff I'm doing is for nothing? I also know that I am hitting the 9 month post surgery mark and this morning a friend (who has been through the similar experience as me so knows what she's talking about), this is apparently a magic marker that things start to go the right way. Note to self sit down, have a cuppa, read a good book and don't worry
I feel awake and alive and I'm loving it, still I know not to overdo things but really I'm genuinely feeling great, so much that it's time to think about holidays woohoo. I'm hoping to go and stay with friends in sunny Spain in August, a bit (or a lot) of sunshine, some pool and beach time and some natural brown legs and not the fake tan, although it has to be said the fake tan is doing me proud for now, thanks skinnytan :)
I have bought myself a present proskins leggins and a top, this stuff is meant to be brilliant for skin firming and anti cellulite. Now I am lucky that I don't have any cellulite, well not that I can see anyway but I do have the baggy arms which I hate and I would like to firm my belly (I know I know wouldn't we all) but this stuff has great reviews so when I was given a cash gift from a friend I thought it was a good opportunity to spend it on these really expensive leggins and a matching top. Supposedly wearing them for 8 hours a day will improve my skin complex and work towards toning my baggy areas. The weirdest of it is it doesn't need to be washed for 2 weeks, honestly I'm not sure how I feel about that. I felt bad enough when we had the snow and I wore the same pyjamas for 3 days!! But these come highly rated by QVC (yes I am still shopping from TV, I think I might have developed a bit of a problem) and a few very good looking sportspeople, so I will wear them constantly, yes I might never take them off, they are really comfy.
https://proskins.co/
Now for any gentlemen who may read this I want to apologise in advance for this next paragraph, skip ahead, honestly it's a womens thing! Since I had my youngest (now 27 year old) daughter I have had a monthly boob/breast issue! I had mastititis after she was born and have got it during my period ever since. As a result of this I have the depo injection every 3 months, it stops me getting a period and therefore stops my boobs swelling up massively painfully and feeling like very heavy bullets. I've read (honestly I have) about how hormones like the injection and other forms of contraception can be another cause towards our tumours, whether or not this is true I honestly don't know and I don't believe that anyone really does. But, I have decided that it's time to stop having the jab. I only realised this morning that I'm now two weeks overdue my injection, usually at this stage of lateness I would be struggling with my sore and swollen boobs but I'm not. They are still soft and normal (I'm so sorry you are having to read this, I am literally sharing my whole life). Now whether this is just a coincidence or it's the vitamin b or the cbd I have no idea, but it's (fingers crossed) one less chemical for my body to have inside it and that makes me very happy.
I also know that now I am feeling not so urgh all the time, definately thanks to the vitamin b and the cbd oil and cutting down the anti depressants, I want to get back to some fitness, I still can't do the gym because I still can't stand the noise so it's home working out that I'm on and I am doing a little more every week and loving it. Still being careful to modify so as not to knock myself out with a dizzy spell or seizure!!! Sooooo I'm on Beachbody Piyo, definately my favourite, I don't do the drench and other long workouts but the core and buns are perfect for me. I do Oxycise, this is brilliant breathing, great for a wake up if I've had lazy days. The firm fitness has been this week, slim in 30 is bloody hard so I really have had to modify everything but I love that I'm being able to do more and more.
I am determined to look bikini fabulous, well as bikini fabulous as a 40 something year old grandmother of 2 and brain tumour survivor can look. Actually that little lot makes me bloody amazing :)
My thoughts are clearer, I have been so good at forgetting the words I want to say or write, until the last few weeks I would just give up trying to remember the word but I have learned that if I stop, breathe and consider the word comes back to me. It's amazing. I wonder if I am going to be my old self again or even just a different version of myself. Either way I am happy, I have a great future to look forward to and things in the pipeline. Maybe I'll turn this blog into a book when I'm off the meds and the seizures stop (notice I'm now saying when and not if), what do you think?
So all of the positive stuff I've written and then this morning I looked in my diary and I am due a gran mal, I know I need to stop thinking about it and stop worrying about it but it's there gnawing away at the back of my head and I am scared and I am worried and what if all this good stuff I'm doing is for nothing? I also know that I am hitting the 9 month post surgery mark and this morning a friend (who has been through the similar experience as me so knows what she's talking about), this is apparently a magic marker that things start to go the right way. Note to self sit down, have a cuppa, read a good book and don't worry
Thursday, 12 April 2018
A not so gentle reminder
These are not my words, they were from a facebook post I read months ago and kept the words. To the person who really did write the below words I'm sorry I don't know who you are. They resonate and as I found them again last week they made me cry because the truth is real.
Every day I put my make up on, twice a week I put fake tan on my face so that others don't see my dealthy pale face. Every month I get my nails and eyebrows done. I have never considered myself to be vain until this happened. I might feel like the rubbish in the below words but I don't let others see that. For that reason most people think I'm fine, I have to remind myself and some others close to me that I'm not but I will get there, it'll just take a while.
Not everyone recognises having a brain tumour as having an aquired brain injury but the damage caused by the tumour itself and by the treatments, surgery, chemo or radiotherapy, for some all three, can add up to a very serious brain injury.
"I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.
My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.
Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.
I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.
If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!
If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.
Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.
Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.
Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.
Please have patience with my memory. Know that not remembering does not mean that I don’t care.
Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.
If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.
If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)
You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.
If I repeat actions, like checking to see if the doors are locked or the cooker is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)
If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.
We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.
Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without hope."
Every day I put my make up on, twice a week I put fake tan on my face so that others don't see my dealthy pale face. Every month I get my nails and eyebrows done. I have never considered myself to be vain until this happened. I might feel like the rubbish in the below words but I don't let others see that. For that reason most people think I'm fine, I have to remind myself and some others close to me that I'm not but I will get there, it'll just take a while.
Not everyone recognises having a brain tumour as having an aquired brain injury but the damage caused by the tumour itself and by the treatments, surgery, chemo or radiotherapy, for some all three, can add up to a very serious brain injury.
"I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.
My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.
Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.
I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.
If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!
If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.
Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.
Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.
Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.
Please have patience with my memory. Know that not remembering does not mean that I don’t care.
Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.
If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.
If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)
You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.
If I repeat actions, like checking to see if the doors are locked or the cooker is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)
If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.
We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.
Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without hope."
Wednesday, 11 April 2018
The brain is definitely working
I've worked my poorly little brain a lot the last few weeks. I've put myself on yet another course, mindfulness this time. I think that once I've completed that the four courses that I have under my belt will set me up for a great future business and that's exciting. Thank goodness for groupon, it keeps having these courses for really good affordable prices, so I can keep studying :)
I've been asked to help a couple of people out with hypnosis, I have a chap who has got terrible sleeping habits and another who can't eat any fruit or veg. I'm going to use them as practise (obviously they know this, I'm not just letting them think I really know what I'm doing). I have worked so hard to get to this point but now I'm being asked to help someone it's nerve racking. This really does mean it's time to start using what I've learned.
I've also been doing the brain training https://www.lumosity.com/ some days I really don't like it because it's tiring but most days I'm doing it and beating my daily scores. Then there's the Spanish https://www.duolingo.com/course/es/en/Learn-Spanish-Online are both free apps that I've been using most days, they really good and giving me the kick up the bum that I've needed to keep going, I don't like missing days on either of these so I make time to slot them in. Finally on my learning is Spanish again, Michele Tomas is a reknowned language teacher, I bought his Spanish course years and years ago, it's great to put on the audio on my phone and listen to while I'm getting my steps in. I am feeling accomplished and maybe a tiny bit smug :) My next step on this is to see if I can find a Spanish group to join, socially I don't know how I'll manage but I think it might be time to try something new.
I've had another benefits assessment this week, this time I am not doing it on my own, my brother (the rottweiler) is my support. He had reams of paper of information. The organisation had already been told by my brother not to send the previous vile assessor as he caused me so much distress that he brought on a seizure. So this time it was a lady and genuinely she was lovely, shocked when we told her about the past experience. As well as the assessment went it brings back all the bloody awful stuff again, listening to my brother explain the security thing that I have to carry around in case of emergencies or how my social life has changed and my life nearly brought me to tears. I'm not sure about how I felt when he told her that some days he turns up to pop in and I haven't even got out of my pyjamas!!!! They are very nice, comfy, warm fleecy pyjamas! That and then my daughters telling me they think it's time I go back to work - I think they are getting bored of worrying about me. I'm bored of worrying about me. I'm ashamed to say that a shitty facebook post has told a few people how fed up I am of them :( (not proud of that at all!!)
So here goes on the medication. I am now taking 2 drops in the morning and 2 drops in the afternoon of the CBD and I generally feel great, sleep well, fog lifting for longer and longer periods of the day. I sleep well too, it seems to take me ages to go to bed as I'm more awake but I sleep like a log. I've also got the balm which I am putting on my scar which honestly feels like it's softening and shrinking. This stuff is literally like magic, I love it so much I'm sharing again https://www.lovecbd.org/ I've reduced my anti depressants to half and am having no bad effects, felt miserable yesterday in the morning after talking to my daughter but that was the conversation not the tablets. My hair is definitely growing thick and fast thanks to silica and vitamin b. So all in all things are improving. I'm still waiting for a neurology appointment but am really living in hope that 6 months free of a seizure will see a reduction in the keppra and 12 months free of seizures will see me keppra free and back to normal life with work, wine and travelling again woohoo.
On that note I'm signing off to do a workout, I've got a bikini I need to shape into :)
I've been asked to help a couple of people out with hypnosis, I have a chap who has got terrible sleeping habits and another who can't eat any fruit or veg. I'm going to use them as practise (obviously they know this, I'm not just letting them think I really know what I'm doing). I have worked so hard to get to this point but now I'm being asked to help someone it's nerve racking. This really does mean it's time to start using what I've learned.
I've also been doing the brain training https://www.lumosity.com/ some days I really don't like it because it's tiring but most days I'm doing it and beating my daily scores. Then there's the Spanish https://www.duolingo.com/course/es/en/Learn-Spanish-Online are both free apps that I've been using most days, they really good and giving me the kick up the bum that I've needed to keep going, I don't like missing days on either of these so I make time to slot them in. Finally on my learning is Spanish again, Michele Tomas is a reknowned language teacher, I bought his Spanish course years and years ago, it's great to put on the audio on my phone and listen to while I'm getting my steps in. I am feeling accomplished and maybe a tiny bit smug :) My next step on this is to see if I can find a Spanish group to join, socially I don't know how I'll manage but I think it might be time to try something new.
I've had another benefits assessment this week, this time I am not doing it on my own, my brother (the rottweiler) is my support. He had reams of paper of information. The organisation had already been told by my brother not to send the previous vile assessor as he caused me so much distress that he brought on a seizure. So this time it was a lady and genuinely she was lovely, shocked when we told her about the past experience. As well as the assessment went it brings back all the bloody awful stuff again, listening to my brother explain the security thing that I have to carry around in case of emergencies or how my social life has changed and my life nearly brought me to tears. I'm not sure about how I felt when he told her that some days he turns up to pop in and I haven't even got out of my pyjamas!!!! They are very nice, comfy, warm fleecy pyjamas! That and then my daughters telling me they think it's time I go back to work - I think they are getting bored of worrying about me. I'm bored of worrying about me. I'm ashamed to say that a shitty facebook post has told a few people how fed up I am of them :( (not proud of that at all!!)
So here goes on the medication. I am now taking 2 drops in the morning and 2 drops in the afternoon of the CBD and I generally feel great, sleep well, fog lifting for longer and longer periods of the day. I sleep well too, it seems to take me ages to go to bed as I'm more awake but I sleep like a log. I've also got the balm which I am putting on my scar which honestly feels like it's softening and shrinking. This stuff is literally like magic, I love it so much I'm sharing again https://www.lovecbd.org/ I've reduced my anti depressants to half and am having no bad effects, felt miserable yesterday in the morning after talking to my daughter but that was the conversation not the tablets. My hair is definitely growing thick and fast thanks to silica and vitamin b. So all in all things are improving. I'm still waiting for a neurology appointment but am really living in hope that 6 months free of a seizure will see a reduction in the keppra and 12 months free of seizures will see me keppra free and back to normal life with work, wine and travelling again woohoo.
On that note I'm signing off to do a workout, I've got a bikini I need to shape into :)
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