Tell me it isn’t so

I have had a few tweets in the last weeks that have left me somewhat concerned by what is happening in the outside world. I have found some of them disturbing enough, that I am beginning to be truly glad that I am housebound. I had realised before I was no longer able to go out and about myself, that there was an element who had developed a somewhat malicious attitude towards the disabled. When I recently wrote a piece about how things were several years ago, I had my eyes opened by some of the comments, but now I am getting the impression that it is even worse than I ever thought possible.

I received a tweet yesterday, which ended with this ” it makes it harder though when it’s not understood; the pain doesn’t leave me the energy to explain/defend”. I found that so wrong, so distressing that someone should even feel that way, that I responded with the following “We should never have to defend ourselves, just because pain can’t be seen. The fact we feel it makes it real enough!”. I was shocked to find that it received four retweets and fourteen likes. If you don’t do twitter, trust me, that is really high, considering, it was a reply tweet. This isn’t the only time in the last few months where I have spotted a high response to tweets of this nature, something I don’t remember even just 4 years ago when I first joined. Mention anything to do with being treated correctly by others, and the responses have risen across the board, and not just when it comes to the disabled. I can’t help but get the feeling that there has been a huge mood shift out there when it comes, to something as simple, as being a caring human being.

As an outsider, someone who has little contact with the real world, I find this distressing. If the world were filled with caring people, that tweet would have been ignored, or better still greeted with confusion. Clearly there are far too many, who have found themselves having to explain what is wrong with them and worse still, feeling as though they are under attack, simply because they are ill. When I wrote the post about my past a few weeks ago, several people came back with their own explanations as to what was behind it. The most common one was, to place the blame on the government and their policy of forcing the chronically ill, back into work, even when they aren’t fit enough to. I would have expected, that if that was the case, people would become more caring not less, as if I thought something was unjust, that would be my response. Yet the feeling seems to be, that people are actually agreeing with the government, and now see all sick people are scroungers and fakers.

It’s not only on Twitter and here in my blog that I have come across this change. Yesterday, I can across a blog, from a woman who is actually scared to leave her home, because of the verbal attacks she has suffered. I am at a loss as to how the world has changed this dramatically and I’m sorry, the government theory to me just doesn’t wash. There is hardly a week goes by, that we don’t see yet another case, of a person who has been fighting to get, not money to go down the pub with, but money to allow them to eat. Money, they are entitled to, who have long-standing medical conditions that they will never recover from. How can the millions who watch these heart-wrenching stories, not feel compassion? How do they watch, then go out and attack someone who is in a wheelchair, simply because they are ill? I’m sorry, but I don’t get it.

By chance, I caught part of a program that was on last week about discrimination. It was looking at racial discrimination, but something was said in it, that set me thinking. They were in a poor area of a large city, a woman who was receiving benefits, simply because she didn’t have a job, was verbally abusive towards an Asian man standing outside his shop. Afterwards, she realised she had been caught on camera and she tried to explain herself, the telling bit, were her last words, “I’ve got nothing against him, I’m, I’m just jealous.” Could we really have reached a point, where there are people out there, who are quite simply jealous of us? It’s a thought, that I find disturbing, in so many different ways.

This is now my ninth year of being housebound. The last time I was out and about amongst people who I didn’t work with must be, two or three years before that. As those who have been reading for a while know, I worked right up until 5 years ago. I was never in the position, or locations, where I might have mixed with people in those financial positions. I have been treated appallingly at different times in my life, by both those I knew, and by strangers, but I can only imagine, what it is like to be shouted at simply because I am disabled. I truly feel sorry for those who have gone through such a thing, but I also feel sorry for those who are carrying such abuse out. They may be shouting out that we are scroungers and so on, but I think it is their own position they are really shouting about. We the disabled, are highly visible and easy targets. It leaves me cold that society has slid into such a position.

Those of you reading today, hoping that I would give an update on my abdominal pain, well, your right, I have been avoiding the subject, but here’s an update. It’s a bit better, above my normal, but nowhere near as bad as the other evening. I have decided, though, that I am going to call my doctor when his surgery opens next week, if for no other reason than to get better pain control. Whatever happens, there is no way that I can keep on living with this pain, something has to change.

 

Please read my blog from 2 years ago today – 28/02/2014 – Disruptive sensations

My day is once more running behind but for once it isn’t my fault. I actually was up an hour early this morning as I woke unable to cough and really bad pain in my throat, sleep wasn’t going to be an option, so I just got up, with thought that I would be able to rattle through everything and have an early sleep this afternoon. Adam has taken a long weekend so he is still asleep but is actually going out…..

 

 

 

 

The British way

Like the majority of people of my generation have formed the knowledge of life in other countries through the TV and movies, neither of which are truly known for their accuracy, unless it is a documentary, but even there you have to still do a great deal of reading between the lines. Being now truly part of the on line world, has shown me more and more what life is like for people who live with chronic illness all around the world. I have pieced together so many different stories and sifted the facts, to come up with one final conclusion, strangely the same one as I had before. It doesn’t matter what country you live in, your true “care”, comes down not to where, but to how much, how much money you have that is disposable. There is a miss conception abroad that once you are ill in the UK, everything is done for you, from your care to your home, well that isn’t actually the situation. Don’t get me wrong, yes our medical care is free and if you can no longer work, you don’t have to pay for the drugs you need unless they are really expensive. If they decide that the benefit of the drug, isn’t enough to make it worth while, even if that means extending someone’s life for possibly over a year, or longer, you will not get them from the NHS at all and have to either go without, or pay for them yourself. Unfortunately this is a growing issue, as so many of the new drugs appearing on the market are expensive as the companies need to make their cost back for their development, before they bring the prices down. I am lucky to not be in this situation as it is mainly people with end stage cancer who are now having to beg, borrow and run fund raisers, just to stay alive that bit longer, so I am not best qualified to talk about the deeper details.

In the UK the words “postcode lottery” are well known, not just because there is one you can win money on, but also because that is how many treatments appear to be available. The NHS isn’t actually one big machine that cares for the whole country, it over sees what is regional care. Britain is broken down in to regions, the first are clear the four individual countries who make up the Union, but within those countries are regions and each regions has control of it’s own budget, allowing the management boards to decide what care they are going to approve and what they won’t. This means that you may not be able to get the treatment you need where you live, hence the “postcode” bit, move anything from 1 mile to 400 miles and you might, or definitely will, there is the “lottery”. You can appeal the decision of your NHS region to see if they will make an exception in your case but the chances are zero to slim. There are already people who have had to sell their homes and move away from family and friends, which are much needed when you are so ill, just so they can get the treatment they need, I can imagine that it is a horrendous choice to have to make, especially when the person who is ill may well still die in a short period of time, leaving their partners miles from what they call home.

Now comes the bit that I do know well, what happens with illnesses like mine. If you know my story, well you know I had to keep pushing and going to different doctors over 20 years, to eventually discover by accident that I have PRMS. Because it is a know condition that doesn’t respond to the normal drugs for MS, my drugs are mainstream and basic, so cost isn’t an issue, the NHS pick up the bill. It is also unlikely for me to be in the position to have to fight for a drug as the drug companies aren’t doing any relevant research as there are so few people with PRMS, just 5% of all MS suffers. That said, it could possibly occur from one of my other conditions, the future will tell. Not only do I get my drugs but any equipment that will assist me from their approved range, which is a mixed blessing as yes I loved my wheelchair, but their perching stools, grabs, walking sticks and splints are really ugly and often not suitable for use, but I have to say that I am really grateful for the stool, ugly or not. I think everything is designed for hospital use, without them thinking at all about people using these things in the real world. This though is the point where help really ends as when it comes to care at home for someone like myself, there is actually very little.

The government pays me monthly a fixed sum call Disability Living Allowance, this is calculated based on how disabled you really are and it is to pay for the extra expenses incurred which covers a huge range of thing including if you need it to pay someone to assist you with dressing, washing and so on. It is also something that isn’t an automatic payment, you have to prove that you really need it and in some cases, not even your specialist opinion is not enough. I was lucky, one way of looking at it I suppose, to be ill enough to receive it without any problems. When I was still working I also received a payment to cover the difference between what I would have paid to get back and forward to work on the bus and the actual cost of my taxis which I had to have. Once I was no longer working, I started to receive not just the normal payment anyone without a job would have, but and additional small payment on top as it is recognised that I will never work again, that and the DLA is what I live on now. The reality of life is that although I have that DLA payment, we can’t afford to use it to employ someone to be here for a few hours each week, at most it would cover the wages of one person for 5 hrs a week, but we need that money just to live, to pay the bills we have, without adding others, no matter how much I might need it. Right now we manage, if we need more help in the future we are lucky again because we live in the right place, in Scotland we don’t have to pay for a carer to come and wash, dress and even feed us if needed, that is free, in the rest of the country it has to be paid for. It doesn’t matter where you live there is no assistance for things like cleaning your home, or doing laundry or any of the other tasks that a disabled person may not be able to do as it is assumed if you are fit enough to be at home, you are fit enough or have family to do these things for you. If we didn’t own our flat and it was rented, they would have then paid part of our rent, depending on what my husband earns, as it stands we get nothing towards our mortgage.

My life may not be perfect and I may not have everything I want to have to live my last years in true comfort, but I feel so lucky to have what we do and appreciate every penny that we are given and every tablet that I take, as I know just how bad it could be if we lived in some other countries. The lottery abroad to me seems to start long before you are ill, it starts at the point when you are born and if your family can afford insurance to pay for health care. Then it continues through your own life, where your health is dependent again on income and what your own insurance covers or not. I have heard some horror stories from countries that I honestly thought treated their citizens well and had compassion for those to ill to work, now I see that too few do, no money all to often means no help outside basic medication and welfare, worse still are the countries who don’t even supply that. The western world may not be perfect but we really should always count our blessings.

Our NHS is far from perfect, you just need to read back into my blog, as there is story after story of the things that in my own personal life, would have kept an army of lawyers busy if we had had the sue culture we now have in the UK, but was unheard of back then. Personally I still wouldn’t sue them, even if I could, as I feel truly lucky to have our imperfect system, even if they make my life harder than it need be, I at least know that when I call, that call will be answered not with “What card do you use”, but with “Hello how can I help you today.”

 

Please read my blog from 2 years ago today – 18/11/12 – Positive Damage

At times it is all to easy to stop looking out and to spend too much time looking in wards, when you are ill and on your own a lot of the day you loose that feeling that there is a world out there. I often wonder if that feeling is compounded by the fact that annoyingly it has manage to get on fine without you, and…..

Doing the Knowledge

There are always loads of things to think about in life and I have been told often that I “think too much”, a phrase I have never really been able to understand. To me if you don’t question everything then you don’t have a chance of understanding anything. I am inclined to believe that “knowledge is king”, it’s OK I’m not trying to put in as many quotes as I can into one paragraph, they are just apt to my post today. When I first had the idea put to me that I had MS I wanted to find out as much as I could about what I was facing, at that point I didn’t have a confirmed diagnosis, just an opinion of a doctor who didn’t specialise in neurology but ENT. What I did was what many do I started to read everything that I came across, I read and read and scarred myself to death and also laid down in my mind a lot of rubbish, of things that may never happen or have and aren’t as bad as the medical description made them out to be. At that point I thought I was arming myself for the future, that I had to know what was possible to happen to me as time passed, I wasn’t.

One of the things that I would love to change about the whole medical system in the UK is how and what they tell you when. I do believe strongly that they should tell you everything they know and not hold back anything at any time, but they miss terribly the opportunity to help us all learn and understand what is wrong with us. Some of you may think this isn’t a Doctor job and I am not suggesting that it is, what I am suggesting is that knowledge packs should exist for all chronic conditions, it is that pack that should be handed to you at the point of diagnosis. I and many I have spoken to have all come away with questions that once out of the hospital the only place we have for information is the internet and as we all know that isn’t the place for a novice to find reassurance.

The first thing that I would want to see in such a pack is firstly a FAQ, I will almost guarantee that every doctor could put together a list and those list will be not unexpectedly reasonably identical. I know in the last few months on twitter that I get asked again and again the same things and I try to answer but I am a patient not a Doctor, I can only ever answer with how it affects me. I do know that a lot of conditions are individual to the patient but there always are huge crossover or even universal symptoms that could be explained.

The second a glossary of terms used and what they mean. I have on a few occasions translated doctor speak incorrectly and it is their language that is confusing ,not what they are saying, plain English isn’t used by the NHS and it often feels as though they are talking in a foreign language on purpose so you don’t know what they are really doing.

The third would be a list of web addresses and literature, that have been checked for their presentation of information and passed as suitable to read. I have trawled through medical papers and research notes trying to find what I am looking for and not been able to understand most of them, wasting hours for a simple question.

The fourth a list of organisations and charities along with contact details that specialise in assistance for that particular condition, with a few details of how they can help. I am not big on these but I know a lot of people find them helpful.

The final one is actually the one I hear most tagged with “no one told me” is a list of what benefits and support that are available if you fit the criteria and how to claim them. There should also be info on what might be available in the future such as carers, respite and so on, all these things I know change from area to area, and the criteria change from time to time, but if you don’t know it even exists you can’t even try. I spent 2 years paying out over £300 a month for taxis, there was I eventually discovered a payment I could claim that paid the difference between what my travel expenses would have been use a bus to travel to work and what the taxi cost was, it worked out that I only had to pay about 1/3, the rest was picked up by the EU. I know I was surprised to the EU doing something useful.

I would have given my right arm to have had such an information pack. It was months after diagnosis that I was given a couple of one page leaflets that told me nothing that I hadn’t already found out, but it had taken a lot of work and upset to get it. I really believe that armed with this information it would make adjusting to your condition a lot easier. Not everyone I know wants to read anything other than a one page list of contacts, but the more you know and the more you learn about thing, the better you are armed for the future. When a new symptom that you didn’t even know could happen in your condition appears, it is frightening, if you already knew it might happen, then the fear is lessened and being calmer, you deal better with the situation you find yourself in. In a round about way as well the pack would save the NHS money as a lot of visits to the Doctors are not needed all that is needed is to know it is normal to your condition, or that it is something to get seen about asap.

Not everything can be covered for every person but surely it is better than people around the country stressed out trying to find the info they need when someone already knows, and they just haven’t told you.