A new beginning

I met my social worker for the first time today. It is nearly two months since we made our application for assistance with my care costs. They may have moved slowly, but as they say, good things are worth waiting for, and for the first time in my life, I can say that I have met a social worker in a good situation. As a foster kid, I have terrible memories of condescending monsters who weren’t interesting in helping me, just in pushing me through the system. I had told myself that times had moved on and that the world is a different place, but I was genuinely, not happy about having to have the social work department involved at all. There was this scare in my memory that made me want to do anything other than having anything to do with them, but I knew there wasn’t any way around it. Financially, we quite simply couldn’t afford to pay all the bills that would mount up quickly without their help. This meeting was the total opposite to anything that I remembered. I really felt as though she was more than happy to help, really help.

When we made our first steps into finding carers to help look after me, we didn’t have a clue how the system worked, so we did what I expect most people do, we headed to the city council site and phoned the numbers we found there. From the start, we found the information on the site totally unhelpful and equally confusing. One of the numbers we called put us in contact with Cordia, the company who works on behalf of the city council when it comes to caring for those who need it. As you know, I went through their “assessment period” and now have help with showering twice a week. Today, their assessment has been taken into question and to be honest, I wasn’t surprised. They assessed nothing, other than how well I manage in the shower and what help I needed with that and my clothing. It should have included things like cooking, getting on and off the toilet, getting in and out of bed and so on. The full range of things that I have to do when on my own. All they did was ask me questions, nothing more than that. On hearing this, my opinion of Cordia fell even further.

Lori spent about two hours here with Adam and I going over the forms that we have to fill in and what they, the social work department could do for us, now and in the future. We had already filled in all the financial information when we saw Cordia at the start, they had at least sent over all the basic information. For the first time ever, we also got a straight answer about the costs and how much we would be given towards it. She couldn’t give me the final figure, but she said that she had the initial assessment and the figure would be around £61 a week whether I use one hour a week or if I needed full-time care. It was such a relief to actually have a figure at a last, and one that I know that I can cover out of my PIP payment. It really was a huge relief to hear that, as we didn’t have a clue what it would be. Personally, it has actually really been worrying me. Now that I know this, I am also now happy to have some more help, help that I have been needing, but wasn’t going to ask for until I knew the costs.

The biggest thing that I have asked for, is help at lunch time. I have asked for someone to come to the house and to make my lunch for me. I have had a lot of accidents over the years, burning myself and so on, and I have become more and more scared of using either the hob or the microwave. Our new cooker has a small oven that is higher up than the old one, so I have coped with that, but still wasn’t totally happy about it. It will be one thing off both Adam and my list of things to worry about. On top of that, I have also asked for an emergency alarm. You know, the thing that looks like a pen that hangs around your neck. Should I fall or have any sort of accident that I can’t deal with, I just need to press the pen and assistance will be on its way. Again, it’s something I know that Adam worries about when he isn’t here, and I have worried about on occasion as well. There is another cost of £3 a week for the pen, but it’s worth it.

She has left us with another pile of forms to complete, and a list of care companies who operate in our area. It shouldn’t take too long to complete the forms, and a little longer to find out about the care companies. She will be back here on Monday and will go over any of the points we have had problems with. Then it should be about four weeks before it is all hopefully signed off. Following that, well we just have to put it all into action. I asked her what the situation was if my health went downhill and I needed more help, apparently, it would be about another 4 weeks to action that as well.

I have accepted that I really do need carers in my life, the difference that having someone here just to shower me has made, is huge. Although I had been reluctant to ask for any more help, mainly because of the cost, I know that I do need it. It’s hard to admit that you aren’t capable of simply making yourself a hot mug of soup or some scrambled egg, especially when you have spent your life being proud of the meals you can cook, just as hard as saying I can’t wash myself. I suppose it’s like everything else, once you have made that first step, the others just get easier. I don’t know when the daytime help will begin, probably once we have the finance in place. I had feared that there wouldn’t be any until I was 65, but that appears to be another one of those myths that you pick up from TV. It has proved one thing to me, it never hurts to ask, as until you do, you really don’t know.


Please read my blog from 2 years ago today – 31/08/2014 – Helping others to help you

August has almost gone, it doesn’t seem that being housebound makes time pass any slower, I kind of thought that it would, I imagined it was going to be like one of those never-ending weekends when I was a kid, not allowed out as the weather was bad and nothing to do that I wanted to inside. I have heard so many people saying that when they were children that the summer lasted forever……


It’s just not there

My carer didn’t arrive on Saturday afternoon. I was sat here as always waiting for them to show up and give me my shower, but despite the fact they had promised, that they would be here between 3pm and 4:30, no one arrived. On the days that they aren’t here, I normally have something to eat at 4pm, so that I can take the meds that have to be separate from my night meds. I don’t know the science involved, but the meds that I take to dissolve my gallstones, must be taken at least three hours apart from my calcium, plus it has to be taken at night. On top of that, I have another med, that must be taken with food, so I’m not being picky, it’s just the way it has to be. On the days they are here on time, I can still manage all of this with ease. So I was sat here, tired and fretting about how I was going to manage, as the time ticked by. At 4:45, I asked Adam to phone them and tell them not to come. I don’t get how what is supposed to be a service, one that we pay for, can run in such a haphazard way. They didn’t call us to say they would be late, nor when we called them, did they have anything to say other than they were short staffed, but that still doesn’t excuse any of it.

I often wonder if these care services actually care at all. I don’t mean the actual carers themselves, every single one of them has been great, it is the actual companies that I am talking about. I know business is business, and that they are there to make money, but I keep hearing such mixed reports from people around the country. The one thing that seems to be almost universal, is that they are almost permanently short staffed. All of them are caught in the same trap, people like myself and the elderly, who make up the bulk of their customers, don’t have the money to pay the fees, that would allow them to pay their staff better. In Scotland, if you are over the retirement age, all personal care is free, but of course, the government doesn’t want to pay high fees either. Nearly all carers are paid just the minimum wage, a wage that most British people don’t want to work for. Short staffed is an inevitable state, and it’s only going to get worse, now that we’re leaving the EU. Many may not like the influx of people we have had from Poland and so on, who see our minimum wage as inviting, but without them, well, things will only get worse. I don’t normally get involved in politics in my blog, but this is a situation that is worrying, not just for me, but for millions around the country.

For many people, including myself, not having things happening when they should, is highly disturbing. I know myself, that my frustration levels start to rise once we are past 3:45 and no one is here. Years ago, it wouldn’t have bothered me at all, I would have happily sat here without fretting at all. Life has changed, though, and I can’t handle it at all now. I am more than capable of telling myself to stop being stupid, but it doesn’t work. It doesn’ take long for frustration to turn into stress, and stress to turn into exhaustion and fatigue. When your brain doesn’t work well enough, to bring logic to all parts of it, life is hard, something that is even harder to get through to something like a business. How do you explain to them that their actions are making not just your day difficult, but your health worse? I’m not just talking about the carers here, a company that should fully understand, but all of those companies we have to interact with, ie. like my recent run in with my now ex-internet supplier. Getting it across to people who are not specialist in your health, that you aren’t just being difficult, but things not working properly is impacting your very existence, is almost impossible, especially over the phone. Our conditions are often invisible to those sat in front of us, so how on earth you get someone who can’t even see you to understand, well, for me it has proved almost impossible.

I always knew that life was going to get more and more difficult as time went on, but I never foresaw these problems. Although Adam has taken on the bulk of anything that has to be done on the phone, with him working, there are still some things that I simply have to do. I tell myself, that as an educated adult, I can, of course, handle talking to customer services rep. Not having a functioning brain, is proving to be more of a hassle than I ever expected. It’s not helped at all by the fact that frustration usually turns into tears, tears that I know most people don’t have a clue how to handle. When it’s over the phone, my experience has shown that rather than taking more care and truly trying to help, they instead, just try to get rid of you even faster. If there was one thing in this world, that at this stage of my health, I find myself wishing more and more that I had, it’s a PA. I don’t want them for the company, as I know that their chatter would really get on my nerves, but to have someone here to take on all the tasks that I am finding more and more difficult to manage, would be wonderful.

As an adult, I have never been financially well off, and I’ve never wanted to be, so I find it somewhat bazaar that at the time when my need for money should be at it’s lowest, I suddenly wish that I had some. I guess that eventually, we all will, for if there is one thing that we will all be let down by, is the so-called caring society. The reality that I have discovered is that it simply isn’t really there, not in the way that it is needed, which considering each and every single one of us will call on it eventually, is truly ironic.


Please read my blog from 2 years ago today – Know what you think

I knew when I stopped writing yesterday that I had just opened up a topic that I had barely scratched the surface of and that is the truth about the things we fear. I suspect that the majority of people reading this who are healthy will think that my biggest fears must be that of dying, for me that doesn’t…..

Let us live

Sometimes, writing is hard, not because of the subject, but because you know before the words are on the page, the reactions that they will bring. Ask anyone who has lived with any chronic illness for several years and they will know exactly, what I am talking about. People look at us and listen to us, in a completely different way than they do to those who are healthy. They make assumptions about us, from the moment they know we are ill, they are waiting every second of every day, to be able to tick off their list of boxes, and to condemn us. Their preconceptions of what lies ahead of us always include one thing, depression. Well, I hate to be the one to burst the mythical bubble, but most of us don’t get instantly depressed and many of us, don’t get depressed at all, so stop waiting and please stop trying to put conditions on us, that we really don’t need.

It is those assumptions, that lead far too many of us, to simply not tell our work colleges and sometimes even our friends and family, that there is anything wrong with us at all. I fully understand this way of handling things, even though, I did the complete opposite. I chose to put myself under the magnifying glass, because just as with my writing, I believed that telling the full truth to all those around me, was the right thing to do. No, I didn’t force it down people’s throats, but I was upfront and honest with my staff, knowing they would tell the rest of the company. I wanted them to see that a normal life could be lived, despite your body falling apart, and I honestly believe it was and is the right thing to do. As far as I can see, the only way, that we can gain the understanding I hear so many looking for is to be upfront and to tell the truth. The more of us who do, the more the word will spread and the more understanding we will receive, hopefully, even in the distant future, we might even find it in complete strangers.

No one should feel that they have to live a lie, that they have to keep secrets, because of others and what they might say and do. We shouldn’t have to fear being treated like lepers, nor to be made to feel like a performing bear, we should be treated just as everyone else, but with care and understanding when we need it. Nor do we need wrapping in cotton wool as I promise, we don’t shatter if you actually speak about the reality of our condition with us. Those of us who are dying, know so, but remember, so are you. Granted, we will probably get there long before you, but dying isn’t the worst thing in the world, trust me, being treated like an alien race is far worse. We are still the people we were pre-diagnosis, nothing has changed, other than we now have a name for the monster who is living inside us. We should be able to carry on with our lives, just as we were doing before. We don’t want to be looked at as though we have a noose hanging over our heads, we can’t see it and neither should anyone else.

The beauty of being up front, of telling everyone at the same time, is I got rid of all the pitying looks, all the “I’m so sorrys” in just a couple of days. One month later, they had stopped holding doors for me and didn’t look jumpy when I passed their desks with a slight wobble. My attitude shaped theirs and work became a place where I was me again. I can’t say the same for strangers, I wish I could. There is an odd attitude in the outside world, one that says, until you have a walking stick or wheelchair, you’re not really ill. Up to that point, you’re a slacker, a fake, someone who just wants, without reason. Those assumptions grow and grow until we reach the giddy point where we’re accused of taking money from the state, so we can sit around doing nothing. Trust me, there isn’t one of us who wouldn’t rather have a normal life, where we have to earn our money, but many of us don’t have a choice.

Assumptions are painful, they make our lives harder than they need to be. I still remember the looks I got when I was able to leave my home, and venture into the city in my wheelchair. I used to go into town every Saturdays when I first got my wheels. I told Adam that I stopped going because the city center wasn’t as accessible as they say it is. It wasn’t just that, as bad as it was, there was one other thing that stopped me going, the looks. I could read their sneers, I could see the questions. “How could someone in a wheelchair, have that much money to spend on clothing and food?” I knew, because, the more bags of shopping I acquired, the worse the looks got. I was still working, I had as much right to spend my money on what I wanted as anyone else. I also heard the “tut’s” and the “sigh’s”, when they came face to face with me, blocking their way down the aisle with my chair. Not only where many shopping aisles too narrow, so were the minds of those I met in them. So if you’ve ever wondered why so few people in wheelchairs are seen in the city, well there is your answer, we’re not made welcome.

I don’t think it is too much to ask for people to treat us just as they do everyone else, but for some reason, it seems that it is. We’re humans, we’re not made of glass, we do have eyes and ears, and a brain, and we don’t want to be pitied. We know all about our reality and our futures and we would rather talk about it as it is, than being told to have a positive attitude about what are anything but positive facts. That’s the one thing attitude never changes, facts are facts. You can’t wrap them up in bows and whistles, or pretend they aren’t there, and if anything is going to push us into depression, it’s all of this that I have just written about. Our conditions are often really hard for us to handle, but we do our best to get on with life, is it really too much to ask for everyone else, to just let us and do so without making it any tougher than it already is.


Please read my blog from 2 years ago today – 27/08/2014 – Time for action

I have a new hole in the roof of my mouth, the scab left painfully and suddenly when I was eating my lunch yesterday. It felt so big that I have to get a mirror and take a look and I was shocked, it is about the size of 5 pence piece and slightly deeper, I am sure it will in time fill in, but whatever is happening in my mouth just now, it sure knows how to leave its mark. In my entire life, I can only……

I’m back :)

I’m so sorry that I disappeared as I did, but it wasn’t my fault. I was here. I was sat right here in front of my PC, as I always am, it’s just that I couldn’t get online. After continual issues with Talk Talk, my broadband provider, I decided to change companies, but Talk Talk wasn’t quite finished making my life hell. They didn’t release my phone number on Wednesday morning as they should have, but they did take away my broadband, phone number, and ability to make any calls other than 999 and Freephone numbers. It has taken my new company, who I have to say has been wonderful, to get the whole mess sorted out, as it didn’t end at Talk Talk messing up, the company who does the physical work at the exchange were failing to get the work done. If you are looking for an internet company that cares, put the customer first and even does things like phone you back to keeps you up to date with what is happening, then move to Plus Net. Although the whole experience could have turned out to be one of my ultimate nightmares, they turned it into just a bad dream. I have to admit that not having the internet, hasn’t been the greatest experience, and sitting playing card games all day long, is a bit dull. No internet means no catch-up TV and no box sets, just the plain offerings that I managed to record. I have missed so much it’s going to keep me busy, just finding them all again. I have survived my technology detox, even though I wasn’t looking for one, but I’m not sure that I could have put up with for much longer, but it wasn’t as bad as I expected.

I have to admit though there was one thing that I couldn’t but worry about, and that was all of you. I was sure that there would be people out there concerned as to what was wrong with me. I was also sure that there would be the odd one or two who might have started to worry. Well, I’m sorry for putting you through this, but there was nothing that I could do about it. If I could have even been able to send even a single tweets, I would have, but I was totally cut off from the world. So sorry. It is going to take me a couple of days to catch up with all the tweets in my inbox and to manage to get all the quotes, #PSMyWords and so on, running as normal, so bear with me, I will get there.

Sorry again if I worried anyone, but be assured, I am fine.


Please read my blog from 2 years ago today – 25/08/2014 – Too well educated

Well here it is, Monday, the day I have to decide just what I am going to do, rejoin the world fully or stay part-time a little longer. I have actually more or less made my mind up to rejoin, but it isn’t as instant as anyone might think as I work on the day ahead when it comes to the blanket everyone tweets, so the work I do today won’t show……

Telling the truth

I don’t remember when it happened, it wasn’t like there was this sudden revelation or I even made a true decision about it, I just know that it happened. Some might say that I gave up, others that I saw the truth, I’m only sure of one thing, it’s not the first and I can’t prove the second. I’ve been ill for over 30 years now, most of it unaware of what was wrong with me, just with this knowledge that there was something wrong, something seriously wrong, but no one else agreed with me. I was left to just get on with life, to make the best of the way my body was and to do what I could, to make my life the best I could. Personally, I don’t think that I made too bad a job of it. When things were bad, I even found the money to go to the homeopathy hospital, but after 5 visits, nothing had changed and the money I had saved up, was running thin. I had a simple choice, get on with living or starve. Eventually, when I did get my diagnosis, I had the most amazing collection of reactions to it. I knew that I had just been handed a death sentence, but on one level, I was overjoyed because I had been right all along. What I didn’t expect was that there was no cure, no operation, nothing that any doctor could do for me, other than palliative care. I had for all those years believed that the day they could tell me what was wrong with me, would be the day they would start to cure me. When they couldn’t, I searched everywhere that I could for an answer, for even the slightest clue that there might be an answer one day, all I had to do was hang on.

I’ve been hanging on now for 15 years and not a single advance that has been heralded as the miracle cure will ever be of the slightest use to me. In fact, I no longer even read the write ups with any hope, I only read, so that when all those wonderful caring people out there, send it to me for the hundredth time, I can comment on why it won’t help me. As I said, I don’t know when it happened, or if there was a decision involved in any way, but I no longer even look for a cure or even anything that might improve how I am. More than that, I no longer even have any hope that the medical world will be able to help me, any more than they do today. I expect that I’m not alone in reaching this point, I suspect that there are many out there silently living exactly where I am. We feel we have to be silent, as we believe that our loved ones and those who don’t know us wouldn’t understand, that they might see how we feel as us giving up, but it isn’t. I haven’t given up on anything, other than false hope.

Hope is a wonderful thing as it gets us through some of the worst times in our lives, but it’s only useful when there is something to base it on and something we can believe in. I don’t remember when I stopped looking for what wasn’t there, all I know is that it was before I became housebound. Somewhere inside me, deep inside me, I woke up to a truth that had been staring me in the face from day one, reality. The reality of being given a diagnosis of both a rare and incurable condition, that the fact is, the likely hood of anyone coming up with a cure is slim, very, very slim. In the case of MS, nearly all the research and therefore all the breakthroughs are in RRMS, the one that the majority of people have. The rest of us, well we are the forgotten, the ones who if it works for RRMS, they will try it on, just in case it might help, but normally, it doesn’t. Right back when I was diagnosed, they said there was no point putting me on any of the MS drugs, as not one of them would help me. It took a long time for that reality to reach my brain and when it did, I felt I couldn’t talk about it.

How do you tell those who love you, that your no longer going to even bother reading any of those sites who claim they might be able to help. That you don’t even want to hear about drugs they have just discovered that have helped some others in tests. In fact, you quite simply want to scream, when you hear it on the TV because you know without hearing anymore, that the truth they aren’t saying, is it won’t help me. Once any condition has been in your body for 30 years, once it has taken you to the point where you are housebound, in a wheelchair and have lost control of most of your insides, there isn’t time. Any drug has to go through years of testing and development before, it would even reach the likes of me, and I don’t have all those years to wait. That’s the reality that too many of us live with in silence, because if we were to say it, whoever heard it, wouldn’t hear our truth, they would hear “They’ve given up”. Well, I haven’t, just read my blog and you will know I haven’t. Giving up is something totally different. This is about living without false hope, about living with the truth and being at peace with it.

It took my many years, right up until the last couple, for me to feel that I could talk freely with Adam about all of this, without him taking it wrongly. I used the news of some “breakthrough” that was announced on the News as my root into the conversation and because he could see both my anger and my feelings clearly, he also saw that I was still fighting but with real life, not some dream that might never come near me. I get angry every time some announcement is heralded as the possible cure for any condition, it makes me angry because, without a doubt, it will build false hope in so many. To me, that is cruelty, especially, if it were to be heard by a child of someone who is dying, they wouldn’t understand it at all.

Trust me, if my doctor phoned me today to tell me that there was a new drug he wanted me to try, I would, but I’m not holding my breath. I’d rather enjoy the life I have, for as along as my body will let me. Free of worry, free of searching and free of all false hope.


Please read my blog from 2 years ago today – 16/08/2014 – Video’s, tricks and talk

Well, that is it done! Yesterday went rather as I expected, it took far longer than they said it would, that was one thing I was prepared for, I had it worked out in my head as taking about two hours and Sophie was here for two and a half. What didn’t go to plan was that her video camera died after 20 minutes, the other hour and half was recorded along with lots of note taking. Although it was all for this new…..