Catching up with the New Year

With all that's been going on, I'd almost forgotten about my blog. I've just been so busy with the work I do for Blue Skies and a few other jobs I'm doing for other people. In fact the work I do for Blue Skies is pretty much a full time job - unpaid of course as I am an NHS volunteer - and payment for me is seeing people leaving the group in a better state than when they arrived.

So much has happened since my last post. The weather has figured enormously and much of the country is still under water, especially the west where much of the Somerset Plains are submerged with villages literally cut off. As I type this, I see that Somerset have declared a 'major incident' and with the forecast predicting more heavy rain in the coming days, the situation there can only get worse. It's not good. There was something I was planning to write about, but it's gone completely out of my mind - as many things do. Unless I write things down and remember where I left the book or piece of paper I wrote them on, I forget. It's getting worse. My mind constantly malfunctions. If it were a computer, I would have thrown it out or sought an upgrade ages ago!

A bout of depression over New Year left me feeling there was little point to 2014. It took a long time for me to 'see sense' again and realise there's lots to look forward to. For the first time in over four years, I have a little money coming in. I'm being paid to look after social media accounts and a website for a friend who is trying to launch his business selling cosmetics and health & beauty products. I will also earn a little money spending time with a dear disabled friend of mine and I have my meagre expenses payments each month. I'm grateful to my friends who have all rallied round to help me which has enabled me to keep going with my volunteering work and avoid having to look for a job - a job I would have no hope of getting given my health problems. I'm in a 'good place' at the moment. There's so much going on in my head, I can't get myself adequately organised to formulate a proper post, but this can be seen as a stop-gap until I'm back in blogging mode once more. rest assured, there's plenty to come...

A parent's dilemma

I have been following the Sally & Neon Roberts case with interest. As a parent, I wonder what I would do in a similar position. Thankfully my son is blessed with good health. There is a higher than normal chance of him developing diabetes as I have it, but this makes us extra cautious regarding his diet.
We live in a world nowadays where information is available at our fingertips. Medical reviews, studies and encyclopedias on medication and medical conditions is available for anyone to view on a computer. Nothing it seems is out of reach. With this in mind, it is no wonder that we carry out our own research into things that are wrong with us and the effects of treatment. We do it for ourselves and we do it for our family members. If , God forbid, anything was wrong with my son, I would insist on finding out all that I could. I would question any diagnosis and investigate any recommended treatment. I wouldn't go as far as refusing it, but I would want to formulate my own opinion based on solid research.

One of Sally Roberts' objections is to her son receiving radiotherapy, a process that targets an area of the brain where a tumour is present with radiation. The fact that a doctor had referred previously to this as 'scrambling the brain' probably didn't help one little bit. She is understandably concerned, as I would be. It is a natural parent's instinct to be concerned for one's child. Having said this, I have no doubt whatsoever that the medical advice given is correct and given the urgency of Neon's condition, it is right that the treatment is given. Still, I do understand Sally's concerns for her son.
I do wonder if she has left things a little late. The time for seeking second opinions and alternative diagnosis is early on when the tumour is first discovered. It is possible we know only part of the story and there is very likely to be more to this than has been reported in the media. There often is. The emphasis is most likely to be on making Sally appear to be a mother who takes risks with her son's health and is anti established forms of medical treatment. This of course is wrong.
Sometimes, we simply have to leave it to the experts. I say this in the full knowledge that sometimes it is right to question the opinion and diagnosis of a professional. I've done it myself, and been proved right. I have commented before now on situations where I appear to know more than my GP having resorted to the Internet. It does happen. We assume GP's are constantly connected to the Internet for the latest news in all things medical and health, but they are not. Sometimes, they are very lacking.
I'm certainly 'on the fence' with this one. I have enormous sympathy for the mother, but can't help feeling she has left things a little too late. This has necessitated the legal action we have seen for her son to receive urgent treatment and in effect overrule her wishes. After all, it is the life of Neon that is at stake here and everything should be done to provide him with the best possible treatment.

There's No Need for It

I've always believed in common courtesy. It takes very little effort and makes for a pleasant friendly environment in which we all can live. When in a customer facing environment, courtesy is something that should be automatic. The job calls for it and regardless of whether someone is working in a shop, on a bus or in a health service, common courtesy should always be a prerequisite.
How saddened was I then to be met with one of the most surly and discourteous people I've met, this morning whilst collecting my wife's prescription at Sutton Bridge Medical Centre.
This practise already has a reputation for being unfriendly and generally unhelpful so I wasn't expecting much. Firstly I was left waiting at the collection window for what seemed as long as five minutes whilst the dispensary assistant stared aimlessly at a computer, in full view of me. A simple acknowledgement would have been enough to satisfy me, but this was obviously too much to expect. When she did finally drag herself to the window she made me feel as if I was a burden to her, as if I had dragged her from doing something more interesting.
I was presented with a slip which I had to complete with a tick to denote my wife's eligibility for free prescriptions then sign and date. I inadvertently ticked the exemption box and was immediately rebuked for having done so being told my wife doesn't have a serious enough illness. I responded by reminding the assistant that she does in fact suffer with asthma, serious enough in my view to justify exemption from the ridiculous charges levied upon patients in England. Instead, my wife has a card which entitles her to free prescriptions based on our income, which I showed to the assistant who then told me to cross out the tick I had made and put another in the correct box.
I did feel like saying something to her about her attitude and general lack of customer service skill, but I refrained from doing so. Instead, I told her to 'have a nice day' and left, muttering under my breath. How different my experience could have been if she had acknowledged me and at least smiled. I am left in no doubt that Sutton Bridge Medical Centre is lacking the very basic in customer service and common courtesy. They have clearly forgotten that it is they who are providing a service. People are there, for the most part, not through choice but because they are unwell. They are in need of care, respect and at the very least, should be made to feel welcome. There is no excuse for rudeness and discourtesy, and for this reason Sutton Bridge Medical Centre win my award for 'Most Unfriendly Health Practise of the Year' award.

The Vicious Circle

Yesterday I attended a diabetic clinic appointment. I had been dreading it for some time having missed my previous appointment. They are getting quite heavy on diabetes now and they send out reminders straight away. If you fail to contact them to arrange an appointment, it is made for you.
I knew I hadn't been managing my diabetes very well. I find the more I think about it, the more depressed I get. For me, it's just another reminder of where I have failed. To be honest, I have been eating pretty much according to my mood. I find that eating often raises my mood, particularly if the things I eat are the things I like. Of course, these are bad for me and it has resulted in my blood sugar levels increasing.
I hadn't really noticed any ill effects apart from a couple of days where I couldn't stop drinking. Like a fool, I didn't connect this to my diabetes but it was a sign that my sugar level was too high.

I had expected a 'telling off' and I got one. I was warned of all the bad things that can happen to me and that I was heading for a stroke at a very young age. To be honest, I have mentally prepared myself against some of the worst effects of diabetes. I know it isn't going to get better and it has already caused my thyroid to stop working. Blindness is something I have thought about, as there is a risk of my eyesight being damaged as the years progress. I've tried to imagine how I would cope and provided my surroundings remained pretty much the same then I think I would just about manage, with one or two modifications here and there. I know it sounds odd, but I am quite resigned to things deteriorating.

Trying to battle diabetes whilst trying to live with anxiety and depression is not easy. I try not to think about my diabetes and whether I am managing it or not as it just adds to my anxiety. Yesterday really brought it all home to me and I was depressed for the rest of the day. I'm not much better today. All this plays into the hands of my wife who despite the fact she has lived with my bouts of anxiety and depression, still fails to understand it. It's not simply something that can be turned on or off. There is often a trigger, and my trigger was my appointment with my diabetic nurse. It's always a vicious circle.
As with all bouts of depression, this one will pass and I will be back to 'normal', or whatever normal is. I was cheered up slightly this morning seeing my mum. I hadn't seen her all week and she could immediately see that things weren't right. She made me some breakfast and I took her to Long Sutton for her regular Saturday morning shop. As a treat, she took me in 'Possessions'. It's a large second hand store full of all sorts of things gathered from house clearances mainly. I love rummaging through things and often find a bargain. My wife calls it junk and 'crap', but for me it is the ultimate shopping experience. I'm not normally allowed anywhere near shops like this which made this morning all the more mood-lifting. There's nothing like sifting through a box of oddments only to find something rare, or to flick through a stack of records to find a long lost favourite. I always find something of interest and often end up hankering for the old days, when I had money and the freedom to buy whatever I wanted. For instance on this visit there was a wonderful Sony music system with double cassette deck and built in turntable for just £30. For its age, it was in remarkable condition and I would dearly have loved to have given it a home. Also, there was a rather nice colour laser printer with its own heavy duty desk and spare toner cartridges for £48. The desk alone was worth at least £50 and had clearly come from an office somewhere. The fact that there were several spare toners in unopened boxes would have guaranteed its operation for at least a couple of years, and the printer would have provided me a nice little project to keep myself busy with. But sadly I had to leave them there, giving them a last glance as I left with my ABBA boxed set of LP's and VHS video on the subject of Lincolnshire - all for just £1!

I will shortly head over to my friends place. I was debating whether I should, given my low mood, but I've decided it's probably the tonic I need to prevent me sinking further into a full depressive low. If I sit here all afternoon, it's bound to happen as I dredge up all the bad things about my life and my past failings. That's why writing this blog helps me enormously. It helps me to get things out instead of them building up inside and making me sink. I will be able to tell my friends about my appointment yesterday. They are both diabetic and know all too well the struggle of having to live with it as well as other illnesses. I know I will get a sympathetic ear there, particularly as they have seen me at my worst and know how easy it is for the depression to set in and take over. They also know that their home is a kind of refuge and way of escape for me whenever things get too much. I know it's wrong to run away from things or situations we don't like, but it's human nature to do so and as far as I'm concerned, if it makes me feel better then it's a good thing.

Well, that's made me feel a bit better, for now at least.

ATOS... This has to STOP

The people I support have had experience of ATOS. I have had experience of ATOS. We are all agreed that the treatment we received has been humiliating and demeaning, failing to take into consideration our mental condition or the professional opinions of doctors and psychiatrists.

I do find myself worrying for them. I am out of it thankfully. I was assessed a couple of years ago following my breakdown and I was deemed by ATOS to have nothing wrong with me and fit for work. I currently do not work. I also do not claim any benefits as I am not entitled to any as my wife works part time. I have had no money for the last 3 years, but I manage.

I fear that the policies of this government and the actions of ATOS will drive many already ill and disabled people to the brink of despair and beyond. I am already beginning to research the number of deaths that can be directly attributed to ATOS assessments and I am deeply concerned by what I am finding. 

Something has to give and this situation simply cannot be allowed to continue. 

A couple of images published today on Facebook, though extreme do describe the current situation very well...