Every journey…..

Why do we keep lying to ourselves? I know I do it all the time, in fact, there is hardly an hour that passes without somewhere in my brain that a lie appears and to make it worse, I don’t think they are lies. Some even go further, I tell them not just to myself, but to Adam. There not huge, simple little things like, “I don’t need help, I can do that alone”. That’s probably the one I tell the most, “I can do that”. Actually, I just told that one about half an hour ago. Adam asked if I needed help to make my lunch, as if I did, he would go out later to the Bank instead of just then. I told my lie and ushered him out of the house. Why did I do that?

The answer if very simple and I’m sure that you’ve already worked it out, I don’t want to be the person who needs help. I know I am that person, but I don’t want to be. Of course, I needed help with my lunch. I was making seafood in my favourite homemade sauce, one teaspoon of ginger paste, one of garlic paste, two of honey, a good squeeze lemon juice, loads of shredded pickled ginger, and some butter. Put it in a bowl with the precooked muscles, prawns and squid rings, and microwave for 1min 40secs, season and eat. It’s simple, delicious and deadly. The deadly bit is that it produces a wonderfully flavoured broth, a broth that without great care slops out of the bowl and all over me. I’m not sure what is worse, the pain that boiling hot broth causes to my skin or the waste of something so delicious. So yes, I needed help but I wasn’t saying so, I was once again being me. If anyone was wondering why I asked for outside helpers to come in and cook my lunch for me, now you know. An outsider means I can’t say, I can do it, as they are there to do it for me.

I don’t like lies, and I really didn’t think of them as such. They are excuses, excuses for me to keep pretending to myself that I can do everything. You know something, it is far, far, harder for me to accept that I can’t do everything, than it was to accept that I am dying, how screwed up is that. I thought all of this was dealt with when I accepted having someone here to shower me, yet here I am, still struggling with my independence being taken from me, even if it is with my permission. I was asked the other day by someone who has been reading my blog for over a year on and off, if I could help them, with the same struggle. I confidently gave them a list of few posts from the last couple of months, as I thought at that second, that I had this one licked. Clearly, I was wrong and I apologise for that. I thought that I had it licked but suddenly, it has worked its way back up to the surface. When I caught myself doing it, I also realised that as I said at the start of this post, I’ve been lying to myself about it all along.

There really is something about out personal independence that is so deeply ingrained that any threat to it at all, is answered with an instant defence. I have discovered over and over that the same thing is required, I have to actually say out loud, that I am not able to do something. Not out loud to myself, but to Adam. It wasn’t enough that he was in the room when Laurie ask me if I wanted help and I said yes, I hadn’t said it to him and somehow, that has become what is important. When he came home, half way through my writing this, I told him without exception, if I am making myself a meal that is hot, he is to get in between me and the food and take over. Yes, I will be having to teach him how to cook most things, but he is to not let me physically put anything in, or take anything out, of either the oven or the microwave. I had to do just the same with my meds, my mail and everything else that I have handed over into his care, and it has worked. I now don’t bat an eyelid when he does any of the things I no longer do. I’m not even tempted any longer to open a letter with my name on it, it just goes in the pile for him to sort out when he gets home.

For me, that is the thing I now see I have to do, I have to make it know verbally, as sorry, writing it here, isn’t enough. Once said, it has become a contract, something that has to be stuck to on both sides and from there on, I start to accept it and to live with and to it. I know that it might not work for all, but as there is one thing I don’t like, telling lies, it is the perfect method. It doesn’t matter what care we are talking about, you have to be ready, to be able to say those words, and ready to live by the consequences. That’s what care is, it’s a contract between you and the person supplying it. Yes, if your not happy with how they do it, you can break the contract and find another way to solve the problem, as you are always in control. Verbalising it, takes it out of your head and into reality, and that’s the first step to accepting whatever the change is. Acceptance isn’t just one step, it’s many, many steps and each one takes adjustment. Step one is made, no more cooking for me when there is someone else who can do it for me. Now, I just have to accept it fully, I know from having the carers here to shower me, it will take me a few weeks to be comfortable, but nothing starts, without taking that first step.


Please read my blog from 2 years ago today – 06/09/2014 – Joining the party

I didn’t realise it until a while after I wrote it, that I was opening a new chapter in my MS. I mentions that I was having gentle spasms, I can feel muscles getting tight but without reaching those solid painful climaxes I am all to families with. The first one I noticed what my stomach, at first I thought it was some kind of reaction to my eating or drinking something, which is why I went……

It just keeps coming

I am now on the “vulnerable person list”. Until yesterday morning, I didn’t have a clue that it even existed, but I’m glad to be on it. My social worker, Laurie (correctly spelled this time), called to tell me that she had put my name on it and to explain just what it was, which I was glad she did as my mind was racing. Apparently, the list is held by both the police and fire department so that should this block of flats needs to be evacuated, they know that I can’t get out of here unassisted. I have to admit that it was something that used to worry me, but I stopped long ago, and had just sort of accepted should something happen, it would be goodbye world. So, if you are like me housebound in a flat, life doesn’t end in flames, there is another way, get on the list.

That was just her first bit of news. Next, she told had news on how much Cordia, the care company we are using just now, are actually charging us for the care we have at the moment. We have been trying to find out since the very beginning and to be honest, worrying as well. There was nothing to worry to about as each week cost just £16.59, not the £40 per shower that we thought it might be. Our first bill will be sent out soon, as we didn’t start paying anything until the last three weeks. Before that, it was free as I was being assessed, apparently, but I’m not complaining about free. She didn’t end there either, she gave me the web address for something I knew existed, but wasn’t sure on the details, a key safe. If I am going to have one of the emergency pens I spoke about in my last post, I will require one so that they can access the building to help me. It is basically a box that is attached to the outside of the house, inside which we can put a set of keys. Just like any other safe, there is a code that is required so they can open it and it is also recommended by the police, and accepted by insurance companies. Again, should the fire or police need access, the company will give them the code too, so they don’t have to try break down the door. For any interested in one, the web address is www.keysafe.co.uk, they aren’t cheap, but they are worth it. As I said the other day, this lady is good and I am so glad that we made that phone call. It may have taken two months for the Social Work department to allocate someone to us, but the wait is being made up for by the speed she is now moving at.

Yesterday, we spent the afternoon filling in the forms that she left us with. They are like so many forms that I have filled in since I have been ill. Loads of questions that were answered fully in the first question. Why ask for details of how your illness affects you, then ask what help you need? Surly, “I’m housebound, wheelchair bound, unable to shower or cook meals, clean the house, deal with phone calls or mail. I need ambulance assistance to leave the house, and support when out or dealing with strangers.” sort of sums up most things, but we wrote it, or something similar, over and over just to keep them happy. Forms are a pain in the backside, but they seem to be what makes the world go around. She is also posting me out another form, this one though isn’t for me to fill in, it for the district nurse. Westmark, the division of the Glasgow NHS who supply electric wheelchairs, now need this form completed before they even agree to assess me. Laurie, Adam and I, plus the district nurses are in total agreement that I need one, that doesn’t mean that Westmark will agree, I have been through this before. The last time, I was turned down because we live in a second floor flat. They said, that I didn’t need one as I wouldn’t be able to get it out of the building. But it never hurts to try again, especially, as it is now 12 years since their last assessment and I will only be using it inside the house.

Laurie’s help hasn’t ended here either. I asked her if she knew how I could get a new pressure mattress, mine is now about 11 years old and no matter how we turn it, there is a dip. She said that she thought that it was actually the district nurses who deal with that, who I already have loads of contact with. I still not sure why I have never thought of asking them, but I hadn’t. When the nurse was here on Wednesday, I asked her and she said yes, it is them that issue them, and that she would see if she could sort out a new one for me. This lady is changing my life at a speed that I can’t believe, she is due back here on Monday, and I can’t wait to see what she will come up with by then.
As for how I am, well other than all the normal problems, my right arm has decided that causing me pain. It started a few weeks ago whenever I used my wheelchair, but slowly it has turned into none stop discomfort and pain whenever it chooses. I am used to it being painful at the end of the day when I’m tired and my body is worn out, but it has decided that all day is far more fun. Whenever Adam is here, he has been pushing me around the house. Hence, my renewed interest in an electric wheelchair. It is really nice of Adam to push me everywhere, but it really isn’t an answer to anything, even at the end of the day. This sudden change has not let up, and even when I have taken a booster pill, it still hurts, especially in my elbow and the muscles just above it. The higher morphine dose does take away the aching, but the sharp pain around my elbow and directly above it isn’t touched by it. I’ve not mentioned it until now as to be honest, considering all the other things my body is and has done to me, it’s nothing. I have started to realise that accepting or ignoring pain, has become part of my life, and I suspect that is something many of us do. We become so used to it, that telling anyone seems kind of petty. We are ill, so what if something new is causing us pain, that’s just the way life is. Isn’t it? Trust me, I do it all the time, and it is an incredibly hard thing to stop doing. I have lost count how many times the District Nurses have told me to take my meds for breakthrough pain as that is what they are for. It just worries me, it can’t be helpful to my body to keep piling in more and more morphine. Yet, they say it’s fine. I’m just not so sure.


Please read my blog from 2 years ago today – 02/09/2014 – Everyday bombshells

I know it will never happen in my life, but I honestly would give almost anything to have a “matter transporter” or a “food replicator” to actually be invented and in my home! I used to really hate shopping and I was delighted when on-line grocery shopping arrived, it was wonderful, the freedom of not having to actual go to the shop was an absolute joy and I have to say an……

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…..

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…..