Random late night thoughts — Scope | Disability forum
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Random late night thoughts

Topkitten Member Posts: 1,285 Pioneering
For the first time in a long while I have been able to smile and had a giggle or two but best of all I actually laughed out loud whilst watching a film. It wasn't really my kind of film but it had a strange effect and also a for too common one.

The film was called "Calendar girls". If you haven't seen it then perhaps you should at least try looking for it. It isn't really a comedy, in fact I think it is based on a true story but I must admit to feeling somewhat better after watching it.

Ok, now for the part that may upset people so I will explain a few things first.

Cancer is an awful thing to suffer and I feel sorry for those that go through it as, I believe, it is much more common than I ever thought it would be. Having said that though I am getting fed up with almost every programme that is connected to health issues and the health services themselves as this awful condition / illness has very quickly become the ONLY serious illness / condition that people can suffer. I constantly see adverts for people to give money to the various charities linked to it with a few adverts in between asking for help with children and animals in other countries. What about the rest of us?

Cancer can be disabling but, in itself, is not a disability in the way that Cerebral Palsy, Epilepsy, Multiple Sclerosis and others are. There is though, a great deal of respect given to people that suffer it which is sadly lacking for most of the disabled and there is also a good chance to recover almost completely from it and resume a normal life, unlike most disabilities. Hospitals give priority to appointments, treatments, care, beds and transport which most disabled don't get. I know it can kill but then so can heart problems and strokes and some disabilities. Unlike most disabilities though the "kill or cure" period is relatively short. I have had people tell me that the pain is terrible and so it can be, for terminal cases, but for recovery cases the highest pain killer used is Buprenorphine at either 10 or 20 microgrammes per hour which (by calculation) equates to less than 4 Tramadol per day. The figures don't include effectiveness and is actually stronger than the maximum dosage of Tramadol (8 x 50 milligrammes) but is still quite low compared to the national standards applied to pain medication.

When comparing the support for Cancer it is obvious that there are a number of charities supporting Cancer but few, if any, for many disabling conditions and very few other charities could afford to advertise on National Television, consequently most people donate to those and many conditions get nothing at all. Last year I was using my scooter on my town's high street when I was accosted by a young lad who expected me to donate to Macmillan and, when I declined, tried to shame me very loudly in public into giving, even though I clearly stated that all my donations went to a small local charity that helped ALL disabled rather than a few disabled that suffer it and a majority who are simply ill for a while with something serious. I tried to point this out but, like many healthy people, he didn't want to know.

Calendar girls, despite giving me a laugh, was all about raising money for Cancer support. I doubt many other disabilities, if any, have a film made about them unless a celebrity suffers something, like Steven Hawkins (hope I spelled that right, too tired to look it up). I must admit to falling into the category of having a disability that gets no support at all but I am not typing all this for myself, but for ALL the other people who also get little or no support. It may sound trite but if given the chance to "cash in" on something aimed at my issues I would generally pass on it as I have had a good life until the last decade and most other disabled are far more deserving than some old cripple. It's one of the reasons I find it difficult to fight against suicide, I would rather be gone and leave as much money as I can to be split amongst my children than to keep going through such severe suffering and wasting it all. In fact I have smoked heavily for years in the hope of contracting Cancer so that I can pass on treatments and finally let go without causing the problems that suicide does. At least I thought I was a heavy smoker at 30-35 per day but since sitting alone in front of the TV all day it has risen to between 55 and 60 now.

As I said, I am not trying to marginalise those that suffer it but would really like people to know that by concentrating all support to a single condition everything else suffers badly and, in my opinion, that is unfair.... especially to young people. If I could I would insist that ALL Cancer charities be made to give a small percentage exclusively for the use of children, no matter what they suffer from.

I will now go and hide before I become the target on a contract killer, lol!

"I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.


  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @Topkitten  

    You forget one thing regarding Cancer.   The charities I was volunteering for not only raising monies and funds to find a cure. to pay for staff training, support  for the person who has the condition.  Plus what you forget the family needs help and support to deal with this. You always have that.

    So much pain, heart break and we as a community who have met those. Always in prayers and thoughts.

    Having met so many people in my lifetime who have this debilitating illness and condition. Having spent time with young children and their Mothers.

    Who I have the deepest respect for and regard for.  Effects the whole family some one being ill with Cancer. I have met single Mothers and the children suffering.  What has happened also the family can not cope and deal with this. Ended up splits, separations and need some one to reconcile the family.

    Had my friends little child ill but her other son could not understand and had problems with him as well. 

    My time and devotion was spent being an listening ear, emotional support. The nurses who do this hospice care met many of them through my addiction clinic. So hard to fully be aware of trying to cope, mentally.  All young women having a drink issues to forget and being able to deal with difficult with the situations of care.

    How much training you have.  All in my opinion worth my time to raise money for.

    Because I need to say also it is never the persons fault. They have this illness and condition to try to understand why.  I know from personal experience and need to add my time spent with those in recovery.  They want to help themselves and others.

    Understanding some one with Cancer to think of others while they are ill and I am holding their hand after bouts of chemotherapy.  I have so much love and warmth for that person.

    Wanting to say to them all the time am here. Yet if you just step back and think.  Where does the money go.? That is where all the money goes as I have said.

    I know the community in this country so many worth while causes. Of course each one I understand has it merits.

    Having been volunteering a lifetime on and off since 18 yrs old now early 50's . Enjoyed every minute helping and being supportive to anything I have done.

    Often I was replacing a staff member paid because had no money. To pay .  Have seen offices close and stretches of funds to cover basic essentials.  Lighting, heat and bring your own lunch, tea and coffee.

    Last time my own mental health charity asks for donations for support workers to pay for there fuel costs.

    All of us know the blight this Government has caused. Loads of charities have to close their doors due to rent increases on properties they own. Changes to others things that charities benefit as from.

    Have you done any volunteering?  May I ask. You never know where you can end up. All I know since doing volunteering it is not only beneficial to my well being. Meeting new interesting stimulating people. There families and been given a warm welcome.

    Having problems and issues they seem to evaporate. Besides most charities have a net work of support and can help and sign post to solve the issues you may have.

    Most important to me is the knowledge and life experience gained.  To guide through me my life to share with others.

    Always have my memories of lost friends, children and their loved ones. No one prepares you for the death of a child. Then followed later by her Mother unable to cope with the loss.

    Painful to write with a heavy heart. Always in prayers.  Another reason to continue giving. 

    I hope you with a conscious think about giving and think about contributing. The journey of life is a winding path with stones in the way. We can stop or go over them and be a member of a community. Support those with kindness, sensitivity, compassion and heart.

    No matter what ever the struggle they have to deal with.
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • inturn
    inturn Member Posts: 5 Connected
    Intersting and well written, I do understand what your saying.
    I for one am very careful about what charities I support. Far to often the only people that benefit from donations are those in charge of the charity. In some cases when they do help as in the third world they actyally make things far worse. So its never good to just hand cash out for a few minutes of "feel good".
    As for your expearace its very unforuate that volunteers don't receive more training, or perhaps in your case they where only claiming to represent a charity. 
    Cancer is a terrible thing that rips many people's lives apart, my fiance died from it back in 2000. And yes the hospital where incredibly supportive to her with far more funds available than for other words. 
    Saying that the times I've been to hospital for my many differant problems I've found them to be extremely helpful and understanding. 
    They on the whole do a fantastic job under difficult conditions. Especially since are goverment seams hell bent on closing down the whole system of care.
    Cancer charities fund resurtch for cures that we won't be able to afford if the NHS is cut.
    But if ths t happens it won't just be cancer patience that suffor.

  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @inturn Thought I would just add. Thank you for your post. The big issues are now with volunteering is the training and the energy and effort to continue volunteering.

    This is because we as volunteers have to under go so much. Everything eventuality has to be covered

    Health and Safety and much more. I had at one time spent so much time training and doing courses. I had a bookcase full of files and courses. One year the amount of paper work all PC nuts. All I was doing was a volunteer role.

    Not going on a journey with Indiana Jones to find the lost tribe or something.  Yes need certificates and safe awareness. Yet I was spending awful long time doing it filling in forms.

    All too much . One  volunteer role in the Kitchen need to do Hygiene cert. Plus others to make a lunch for my fellow disabled. Costs too much and my charity whom I was cooking for would not pay me to do it. For there benefit.  Offered half but I had to pay it and it was three days away.

    So costs multiplied for hotel and the rest travel. etc.  So I left.

    Just had a thought why it is becoming harder to be come a volunteer.  That is why like doing this role here. Being a Community Champion. Just sitting and helping, advising support all you lovely lucky people.

    Pleasure to speak to you and meet you.

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Personally I worked in a charity shop for 3 years. I offered to work in others but a big guy hobbling on a walking stick isn't a good risk for health or too much of a risk in size and intimidation. Some people just get scared because I look tough, not for any other reason and in a shop that caters to vulnerable people they felt it not a good idea. Any volunteering now is impossible as I am completely housebound.

    As far as considering everything is concerned...... anyone that thinks that Cancer is the ONLY condition that affects family and friends is delusional. ANY major condition does exactly the same. However, most of the population are scared of death more than anything else, only those that have life-long conditions really understand that death can be a saviour. I have heard many stories of how family is affected but I only know my own fully so I will relate that here.

    Until age 49 I was father and provider, healthy, sporty, overweight but fairly fit and never a big drinker thus avoiding all the pitfalls many put themselves through every day. When I started having problems it seemed that surgery would solve the problem and the family was happy as such, though partially dysfunctional. My eldest daughter was married with 2 children and seemed happy, my son was a teenager and unhappy living with his mum but no other option was available, my partner and I were very happy though still in early living together stages and my younger daughter avoided me a lot as she never accepted my divorcing her mum and disliked my second wife vehemently. My sister's husband was very successful and this made her arrogant and condescending but I put up with it and mum I helped where I could and more than my sister who always had an excuse.

    Since then my eldest's marriage collapsed spectacularly and, though initially we grew closer, now she avoids me as she cannot accept who I now am. My younger daughter has nothing to do with me at all and hasn't for 4-5 years. My youngest son has grown much closer, become independent but still finds it very hard to be around a father that could do anything but now can do nothing, not even look after himself. I see him every couple of months or so, usually when he wants help or advice. After mum and I became very close and supported each other a lot, her health failed and she died and I lost my only support. My sister used mum's death to try and get everything mum left us for herself and always insisted that he 2 slipped discs was far worse than my disabling condition. Now I can never forgive her the selfishness and sheer bloody mindedness she has shown since mum's death. I effectively have no sister any more. My partner and I split up as it was unfair to trap a much younger woman into the sort of relationship it would now be. I did the splitting deliberately.

    A long-term condition strips a person completely of hope especially with the almost total lack of support that is really needed but almost always unavailable. To tell me that a Cancer patient needs more help is just a common misconception born out of the fear of dying and lack of information of other conditions.

    I stated initially that Cancer is a horrible condition but there are many ways to get help and support plus preferential treatment provides much better chances of getting through it but what of every REALLY disabled person? Most Cancer patients are NOT disabled for any great length of time, compare that to someone who is destined to spend his or her entire life in a chair and has little or no help, no organisations to turn to and no special treatment.

    Like, for instance a lady I know. She is 44 I think and has 2 permanent carers who she sees for 20 hours a week or less. Her disability is that she has no bones in her body from the pelvis down, not a single one. She will always look and be treated as a child because her growth is stunted and yet she has always been happy despite the restrictions on her. She has never had a real relationship, could never have children. Her mother died and she cannot be around a father who treats her like a 10 year old and a brother that cannot stand being seen with her. Her schooling was limited because there was no appropriate special school close enough and normal children bullied her abysmally. She has never received ANY financial help except minimal benefits and struggles to hang onto care when cutbacks are reducing hers.

    This is not an unusual story, it is, in fact, quite common and given time I could relate many such stories but I can no longer see the friends I made at that centre which is the local charity I support. The reason I support it is this.... in my town there are only 2 places disabled can go out to. One is restricted to learning difficulties and the other for disabled with brain damage only. To get to that centre, which is the only "general disability" place within 60 miles takes me a 20 mile drive and I now cannot do so. They do provide transport but only to local area so it cannot help me. Over the last 3 or 4 years their support from the Council was cut, cut and then stopped and they get only amounts from the Council for specific disabled who are allowed time to go out, the rest comes from donations. I hope they never have to close but, at times, they struggle badly because they are only a small local charity providing limited services to the general population of disabled who get no real help and none of whom have ANY chance of recovery..

    As I stated originally I am not intending to insult or upset ANYONE, especially no one suffering Cancer. All I have tried to do is to show the unfairness of the current system and I live in the hope that this will change though I doubt this will happen. Most people's fear of death will "rule the roost" for the foreseeable future and Cancer and heart problems will likely continue to get the majority of funding and support, not until people realise that a long-term or life-long condition can be more harmful to a person than death itself.

    I haven't touched on Mental Health issues which, in my personal opinion, are mostly fuelled by an uncaring society which applies undue pressure on people and provides negligible support.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • inturn
    inturn Member Posts: 5 Connected
    interesting comments. I've volunteered to help at different times. all to often though it turns out that those in charge are paying themselves extremely high wages and expenses, using the excuse that if they where in the private sector they would be earning far more.  
    its a great shame that so many charities are seen as cash cows for the greedy few. and of course when going into foreign countries one has to be very careful not to make things worse with good intentions. 
    I only give to a few charities that directly help those that acutely need it, and that don't take the giant share for personal profit.
    as for cancer charities its a hard one. certainly they made a difference of quality of life for my partner. at a time when we all lost so much it was good to know people cared.
    as for cancer research its a hard one, all to often a company profits from the charities efforts, making drugs that are to costly for those that payed for their development. 
    sadly they isn't much effort being put into the courses of cancer. manly because it comes down to things like fluoride being put into drinking water. 
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    @inturn, unfortunately almost all medical support now is aimed at correcting or curing conditions and little effort seems to be being made to prevent such conditions.

    Elsewhere I asked questions regarding the large increase in average weight and the medical problems caused or aggravated by it. Unfortunately social eating and drinking has become such a large part of current society that, as far as I can tell, it will continue to cause further increases and even more problems. A personal belief of mine is that consuming too much of anything (even healthy foods) can cause issues even if there is no weight issue in that I believe that poor body responses (such as allergies) to certain foods are the body's way of telling us we are consuming too much of something. So much food now contains many unnatural chemicals which we often do not know that they are there and people often do not eat a sufficiently varied diet.

    With the average age continuing to rise due to such methods, there are also many issues becoming large problems. Dementia is an example of this. The laws of Natural Selection are being ignored and eventually there will be too few people looking after too many people with issues or conditions. The demand on the 999 services shows it is already in full swing.

    The fear of death is so strong that people are now maintained in a life that is so poor the person concerned cannot cope and are being put through conditions that we would never accept for animals. There are many reasons why the human race became the dominant species on our planet but unnatural lifespans is not one of them. It is actually dragging the whole race down a path to self-destruction.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • inturn
    inturn Member Posts: 5 Connected
    Are goverment has managed to buck the trend of people living longer, in recent years the average life expectancy has dropped . 
    As you quite rightly said over eating is leading to obesity. Along with lack of exercise and depression its not looking good for are future. 
    Fortunately for myself I'm in to much pain to feel hunger, having to be reminded to eat by my partener so it's just the lack of exercise I have to worry about.
    A good friend off mine has always struggled with his weight, he is constantly hungry always thinking of food. Apart from the amount of pain I'm in he's quite jealous of me.
    Addiction to food is a real problem for many, while others use it as comfort. And of course this is incurraged by the food industry. Ramming extra sugar into everything. Profit being more important than customers health. 
    More than anything I don't know how people can afford up eat so much, I know junk food is cheaper than healthy food, but even so the prices have  risen so much this year we have had to cut back on what little we had.
    More than anything its a great shame all the hope that came with the Olympics has been thrown away. Even schools are cutting back on PE in favour of pushing students to get better exam results.
    What a mess are goverment has made of this country, such a shame 

  • newborn
    newborn Member Posts: 746 Pioneering
    Interesting and informative posts, thank you all.   
    @Tk , a) stop smoking at once, please, you are needed! b) an example of the multiple  reasons you are needed is contained  in  your own post. 

    You have the time and ability and experience and brain, to make a change for the better in the world.   If people can run blogs for millions of followers, all about nail varnish, then you need to get attention to the valid things you could post.   And get published.  And influence the fools making rules.

    Of course it needs disciplined editing, to add statistics and boil it down  for those with limited attention span.   No harm in the old fashioned easy read summary, with supporting information within the longer version.

    The imbalance of charity is documented, and usually aped and exacerbated by government.   Radio 4 has a current series on charity.

    (Even within cancer charities, there is a distortion between greatest need and greatest funding.)
  • newborn
    newborn Member Posts: 746 Pioneering
    P.s. @Tk,  This may be clumsy, but I have thought about you and other posters. Once, you took satisfaction from feeling valuable to your family, plus a small sphere. 

    But in those days, you weren't in a position to speak truth to power, in the wider world, regarding various important  disability related matters, because you only had minimum experience and knowledge, and had given  it little or no considered well informed thought.

    In the grand scheme of things, won't you, paradoxically,    be better able to make your unique contribution on earth right now?, 
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Interesting points @newborn but the problem is that I am in too much pain and discomfort to even look after myself now. Oddly the side-effects from the medication are minimal but the effects from it constantly running out are awful and beyond my capabilities to cope with. I am now getting to a stage when even using this chromebook can only be done a couple of times a week, using a proper laptop nearly impossible so I no longer try.

    Every week I see 1 person, my cleaner, and this just isn't enough for a person gregarious and confident by nature. The every other month or so visits from my son aren't anywhere near enough and my daughters never even bother with that. I have told all of them I want to see them more but they don't appreciate how much it hurts not seeing them.

    My only other contacts are ambulance crews which I have been sent far more than necessary and so I now don't even want to contact 111 anymore as it wastes the ambulance crews time so often. The last one I saw was a week ago or so and they put through a request for a GP to see me which would have arrived at the surgery next day and yet no GP has even phoned me. They wont work with me and wont contact me so I am left completely stranded. MH are absolutely useless and Social Care even worse.

    My hot meal intake in the last 7 days has been one chilli with rice and one spaghetti on toast. Apart from a bowl or two of cereal most days the rest has been chocolate and cakes. How am I supposed to keep going like this? Every day I struggle to stop thinking of killing myself and the only regular thing I do is to play a couple of games on a tablet. Unfortunately my fingers do not work well with these visual kb's so I cannot type much on a tablet, even logging into sites is difficult.

    I may well have the knowledge and intelligence to make a difference but I cannot make good use of them in my current state...... and that depresses me more than anything I can think of except maybe the inability to lose some of the loneliness I feel every minute of the day.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.


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