I have had a series of melt downs of late, which is to be expected considering the underlying stress that is always present no matter how 'benign' Algy is in terms of size and effect. But I have noticed the things I usually enjoy are now becoming sources of great anxiety.
Having a look back through this blog, most posts are about my feelings and emotions than anything else. I find it therapeutic to write so yes, it's a given but also I have noticed the rise in the frequency and severity of meltdowns which can be at risk of getting out of control if not dealt with.
I hate to say this, but social media - or more correctly, Twitter and Facebook is my conduit to the world but that seems to be changing. It's not the medium itself but how I have used it plus my expectations of it, becoming dependant not just for company and news, but also a place of bolstering my self esteem .
It has become the place where I lay my 'back-to-adolescent' insecurities, anxieties, need to be noticed, to be reassured, to be validated as a person. In short I have become addicted and worry one day I will go too far in terms of my neediness and will lose those I follow there and have become friendly with..
On reflection, I seem to be more prone to mood swings which I wonder is bordering on obsessive behaviour , plus what also isn't helping is the menopause which I am starting.
So am I just going nuts? Being childish? Or maybe there's more to this than my time of life and maturity issues?
Most emotional changes are natural responses to being placed in a situation that by it's very nature is a great cause of stress, especially with having to deal with the changes and effects placed on ones life style and responsibility.
Neurological diseases and disorders can and do have mental health illness as a symptom, not in the least brain tumours as some will impact on areas of the brain where emotions, thought processes, memory function etc originate. Add to that effects on the cells where the nerves originate impacting on movement and physical function, all can add distress.
Most Obvious are:
Fear, anxiety, anger, sadness/grief, insecurity, denial of the stress, losing perspective, increased tendency to arguments, width drawl and increased isolation, obsessions, obsessive compulsive disorder, possible loss of reality, inability to cope, depressions, changes to personality, increased mood swings/highs/lows
Also
Memory loss, confusion, exacerbation of current mental illness such as psychosis, dementia, etc. Onset of new mental illness such as anxiety and neurosis, depression, cognitive changes. Depressive disorders. Personality disorders as well as the above which will have an impact on physical function.
The above list is by no means exhaustive. Also it should not be taken that you might have any or all of these, but it does have to be recognised. Often the onset can be gradual or may have nothing to do with the brain tumour, that it can be a problem arising from other illnessess.
My own particular situation is one maybe borne from dealing with changes to my personal life and I have to admit my underlying fear for the future and becoming 'persona non gratis'. As said before I have that wonderful thing called 'The Menopause' which as much as some would hail as being a positive milestone for women, has been a prized pain in the ass for me, not helping my moods what so ever! But I guess at least having an awareness of these means at least I am not going certifiably crazy - yet!
I do have a long way to go in terms of awareness, self honesty and dealing with the future. There is so much I want to do, and I genuinely want to reach out to others and make a contribution. But I also have to recognise my limits and recognise when my reactions are becoming unhealthy and unrealistic. It's a sobering thought, something we all have to be aware off whether fit or not, and also accept that others around us may not always be in a position to help or even understand.
Reaching is out is important and quite often, whether we like it or not, others are more likely to see the changes before we do and that is difficult as it can lead to conflict or abandonment from either side. Some really cannot deal with the issues and some may not want to. Much heartache can usually and does result which is why it *is* important to consider mental health needs along side the physical ones when discussing care and symotoms with your doctor.
Here's a quote from a web page which sums up the issues well.
"Brain tumors can cause seizures, mental changes, and mood, personality, and emotional changes. Tumors may also impair muscle function, hearing, vision, speech, and other neurologic activities. Such effects can be very difficult for both patients and caregivers."
From The Avera Website
Also there's a handy info sheet from an Australia you can find at Beyond Blue Site (Ausralia) This page will open up as a 'pdf document' and you will need a reader for this. A free one can be found here Adobe Reader Website
Hopefully my particular issues will settle in time as I recover from radiotherapy. But an inflamed Algy has a lot of impact and certainly this needs monitoring but not something to be afraid of so long as I am sensible, see it for what it is and seek help when necessary.
Saturday 19 October 2013
Monday 14 October 2013
Algy's Demise - On Charity and Volcanic explosions
Ok, I'm having another 'moment' or more precisely a moment that is turning in to a long moment. Sleep has been rare of late, at first due to facial pain but now because my sleep pattern has well and truly gone up the spout! And when I get overtired, explosions occur in volume similar to Mount St Helen's, Vesuvius and Krakatoa!
Apart from the lack of sleep, what set me off yesterday was a quite innocent tweet from someone who follows me on twitter (and others on her list) telling me I had thirty minutes to get in on a charity action for a children's hospice. In true fashion I overreacted first of all tweeting back how sadly I couldn't join in, but the reply made me BLOW!! At that point, I angrily departed saying I had it with twitter and goodbye! Luckily I have some very understanding friends who calmed me down. I tweeted the sender and gave her a dressing down she would not forget, so hopefully that in the future she will take a little more care on how to send out such tweets and eithre not send them out individually and also only to ask to spread the news about any event.
The reason is this. As anyone who has had to recover or adjust to a long term illness, there's one thing that can hit you harder that your health and that is what it can do to your financial security.
Even with insurance, which sadly I never qualified for due to other medical conditions, it still depends on whether you qualify under their terms of agreement whether you can get the payout you have invested in. Also, what about job security? The ability to pay bills such as mortgages, cat insurance and tax, utilities, clothes for the kids, food and vets for the dog, your actual financial status, your appearance ("you don't look like you're ill" might be a compliment but it can also mean something else), costs of getting to and fro for treatment. Not everyone lives close to one of the eleven treatment centres in the UK. There is all that to consider never mind feeling ill and undergoing whatever treatment is needed.
And when you have gone through months of worry, maybe surgery, radiotherapy and chemotherapy, would you be fit enough to return for work, or will you continue to be ill, not able to sufficientlky recover and then basically sacked because you are no longer able to fulfil your terms of contract, what about then? What about your savings, applying for benefit? What happens when you find out your application for Employment Support Allowance or Universal Credit which is less a month than you would normally spend on petrol and than you have to re-apply as you most likely will be automatically turned down and have to appeal, of which there is no time limit and no money paid to you until after (you hope) you will win the appeal.
And the same goes for Disability Living Allowance or personal independance paymentents as it is called now. Problem with the application forms you have to be savvy at what you put down which is what you are like on your absolute worst day and if you are called for a medical assessment be sure the person assessing you will have boxes to tick and nothing more and the fewer people that pass in their view, the better because as much as that is denied official sources, that's what happens to a lot of applicants.
Now about charities. Of course a lot of help is needed by a lot of people and causes, and it has become a battlefield to get funding. But what I don't like though are the street campaigners who will accost you and door to door campaigns. There's been the odd door to door collections of which we have given our last bit of change to in the past. Again most are for a worthy cause and I assume the more official campaigns are a good effective way to get sponsorship and donations. But I resent it for two big reasons. a) because it puts me on the spot and because of my own financial situation, I have to turn down or even try to avoid the campaigners and b) the percentage of the costs paid by the bigger charities to a PR company who set these street campaigns up.
I feel bad enough about not having the cash to put in the odd cap but there is such pressure nowadays to support this, that or the other most likely there is a greater need. Personally I'm becoming overwhelmed by it all and the feelings of guilt are there, no matter how understandable the reasons are for not being able to contribute cash.
So when a friendly tweet comes through to my hash tag telling me I have 30 minutes to start bidding on a charitable auction for a children's hospice, I blow as it is one request too many. I did send back a polite tweet explaining why but hated the reply, of 'don't worry it if you can't, I understand' sent me over the edge.
Ok, normally I think I would have growled a bit and would have delete the tweet but felt it was asking me on an individual basis with eyes watching to see if I did join in. I have a policy now on for not holding back on *why* I cannot do certain things when acosted in the street and this is no different. When challenged why I won't sign up etc - and yes this has happened - I will not just only explain why but will ask for a donation to 'the Hev fund' (I have 'Hev' as a nickname in some circles) too.
Now don't assume I cannot or do not want to support charities. I support five, two with donations that I wish to continue with and the other three with my time, but I can do no more than that. And do not assume other brain tumour sufferers cannot or are not able to contribute, there is some marvellous work being done in the brain tumour community of which I try and help with if and when I can to raise awareness. Yes we are trying to raise cash ourselves but I hope none are guilty of accosting people in the street or telling them to join in an auction on twitter without at least being sensitive to the fact some cannot afford to make monitary contributions or give their time. Or at least not to openly to ask it of an individual on a social media website.
As said before, I am more than willing to give what time, effort and what energy I have into volunteering and highlighting a cause or whatever. But if you want me to donate cash right about now? Please don't ask as a refusal often offends.
Apart from the lack of sleep, what set me off yesterday was a quite innocent tweet from someone who follows me on twitter (and others on her list) telling me I had thirty minutes to get in on a charity action for a children's hospice. In true fashion I overreacted first of all tweeting back how sadly I couldn't join in, but the reply made me BLOW!! At that point, I angrily departed saying I had it with twitter and goodbye! Luckily I have some very understanding friends who calmed me down. I tweeted the sender and gave her a dressing down she would not forget, so hopefully that in the future she will take a little more care on how to send out such tweets and eithre not send them out individually and also only to ask to spread the news about any event.
The reason is this. As anyone who has had to recover or adjust to a long term illness, there's one thing that can hit you harder that your health and that is what it can do to your financial security.
Even with insurance, which sadly I never qualified for due to other medical conditions, it still depends on whether you qualify under their terms of agreement whether you can get the payout you have invested in. Also, what about job security? The ability to pay bills such as mortgages, cat insurance and tax, utilities, clothes for the kids, food and vets for the dog, your actual financial status, your appearance ("you don't look like you're ill" might be a compliment but it can also mean something else), costs of getting to and fro for treatment. Not everyone lives close to one of the eleven treatment centres in the UK. There is all that to consider never mind feeling ill and undergoing whatever treatment is needed.
 |
| Don't upset me. You really *don't* want to upset me..... |
And when you have gone through months of worry, maybe surgery, radiotherapy and chemotherapy, would you be fit enough to return for work, or will you continue to be ill, not able to sufficientlky recover and then basically sacked because you are no longer able to fulfil your terms of contract, what about then? What about your savings, applying for benefit? What happens when you find out your application for Employment Support Allowance or Universal Credit which is less a month than you would normally spend on petrol and than you have to re-apply as you most likely will be automatically turned down and have to appeal, of which there is no time limit and no money paid to you until after (you hope) you will win the appeal.
And the same goes for Disability Living Allowance or personal independance paymentents as it is called now. Problem with the application forms you have to be savvy at what you put down which is what you are like on your absolute worst day and if you are called for a medical assessment be sure the person assessing you will have boxes to tick and nothing more and the fewer people that pass in their view, the better because as much as that is denied official sources, that's what happens to a lot of applicants.
Now about charities. Of course a lot of help is needed by a lot of people and causes, and it has become a battlefield to get funding. But what I don't like though are the street campaigners who will accost you and door to door campaigns. There's been the odd door to door collections of which we have given our last bit of change to in the past. Again most are for a worthy cause and I assume the more official campaigns are a good effective way to get sponsorship and donations. But I resent it for two big reasons. a) because it puts me on the spot and because of my own financial situation, I have to turn down or even try to avoid the campaigners and b) the percentage of the costs paid by the bigger charities to a PR company who set these street campaigns up.
I feel bad enough about not having the cash to put in the odd cap but there is such pressure nowadays to support this, that or the other most likely there is a greater need. Personally I'm becoming overwhelmed by it all and the feelings of guilt are there, no matter how understandable the reasons are for not being able to contribute cash.
So when a friendly tweet comes through to my hash tag telling me I have 30 minutes to start bidding on a charitable auction for a children's hospice, I blow as it is one request too many. I did send back a polite tweet explaining why but hated the reply, of 'don't worry it if you can't, I understand' sent me over the edge.
Ok, normally I think I would have growled a bit and would have delete the tweet but felt it was asking me on an individual basis with eyes watching to see if I did join in. I have a policy now on for not holding back on *why* I cannot do certain things when acosted in the street and this is no different. When challenged why I won't sign up etc - and yes this has happened - I will not just only explain why but will ask for a donation to 'the Hev fund' (I have 'Hev' as a nickname in some circles) too.
Now don't assume I cannot or do not want to support charities. I support five, two with donations that I wish to continue with and the other three with my time, but I can do no more than that. And do not assume other brain tumour sufferers cannot or are not able to contribute, there is some marvellous work being done in the brain tumour community of which I try and help with if and when I can to raise awareness. Yes we are trying to raise cash ourselves but I hope none are guilty of accosting people in the street or telling them to join in an auction on twitter without at least being sensitive to the fact some cannot afford to make monitary contributions or give their time. Or at least not to openly to ask it of an individual on a social media website.
As said before, I am more than willing to give what time, effort and what energy I have into volunteering and highlighting a cause or whatever. But if you want me to donate cash right about now? Please don't ask as a refusal often offends.
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