Tag Archives: MS

A new beginning

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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

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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

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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…..

Holding on?

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It doesn’t happen often, but there are days when I find myself asking questions, probably the same questions I know others ask of me, but when they come from inside, they mean more. Don’t take that badly, I’m not putting anyone out there down, but we all know, that those silent questions are always the most powerful ones.

There isn’t a certain time of day, or a feeling, place or set of circumstances that triggers them, they just appear when I least expect them and without any warning. Bang, there it is, one of those damned questions. Todays appeared when I was taking my lunch out of the fridge, Vegetarian Mousaka, I wish I had eaten the packaging as it looked far better than the contains did, and probably tasted better too. I was searching for the use by date, then that question  appeared.
“What is it that keeps me going?”.
The first answer was easy.
“Definitely not the food”
Then I started to really think about it, to answer what had appeared from somewhere back there in the muddle I call my brain.

I’ve been here in this flat now for 9 years, a length of time that if you are honest, I bet you can’t even imagine spending in your home. Never going out, not even to get the air. Your world is the space you call home and there is nothing else outside of it, that you can get to. 9 years, it’s a long time. Yet looking back, I find it almost impossible to believe that it could possibly be that long since I last opened my front door, and walked out into the street. Of course, I have been out, I’ve written about that many times, those trips to the hospital, but even then, I don’t make it on my feet, I’m strapped in a chair and guarded by ambulance attendants. Those trips feel far more like being transferred from one prison to another, just to be brought right back again. But my home isn’t a prison, it’s never felt that way, my prison is my body, not the place where it lives. I guess that’s the first answer, I love my home, I love what I see daily, how it makes me feel and the feeling of safety and security that it gives me. I doubt there are many prisoners who would describe their jail that way.

I guess, I don’t really even see my body as a jail either, how can I, it’s the same one that I have lived within since the day I was born. In that regard, I’m as free as you and everyone else out there. Within my world, there is one other constant, my husband. Just like my body, he has been here throughout this phase of my life. There are two clues wrapped up in the last sentence. My husband, who to anyone who reads my blog will know that without him, I would be isolated and totally alone. Yes, there are others now, my nurses and carers, but they are new to this madness. Adam, is my one constant, the one love that lifts me through all the bad spells and makes me laugh and smile on even my worst days. No, I wouldn’t want to survive without him, but that’s a totally different question.

All our lives are broken into phases, not just childhood, teens and adulthood, as they have many, many phases mixed up within them. Some of them cross over each other, and some are totally isolated by the power they have over us. They are made up of relationships, jobs, hobbies, likes, and dislikes. Take my health, they say it started back when I was 21, but they didn’t diagnose it until I was 40, just two years after marrying Adam. During this phase I have been married, had children, got divorced, had three totally separate careers and married again, following three failed relationships. Phases, that intertwined, yet some remained separate in many ways. As we move through those phases, we grow, become more mature and have a deeper understanding of life. All of it makes us the people we are, so for me to give you, or even myself, one defined answer as to how I survive, would be impossible, but I do have many clues.

I survive because I haven’t changed, it’s my life that has changed and it did it so slowly, I grew used to where I was and the fact that I couldn’t be anywhere else. From diagnosis on, I went into a nine-year long nest building phase. I spent all my spare money and time, making our home as beautiful and as comfortable as I could. My working phase of my life overlapped the first three years of being housebound. I had time to adapt, time to adjust and I didn’t even know I was doing it. Two phases ended, but I still had the constant of Adam, the anchor that held me steady while I built the phase I’m in now. Content, housebound, writing and happy. I got here, without even knowing it. I survive because I am here and I now can’t think of a single place that I would rather be. I know that might sound odd to you, but to me, there is a logic there, as if I didn’t feel this way, I would go mad, I’d fall into depression and I would probably end it all. I survive because I have all the things that it takes to make a human happy, right here where I am. To the modern mind I know that’s hard to grasp, but to our ancestors, it would have been easy. Think back to a time when people were born in the village where several generations of their family were also born and spent their entire lives. Not once leaving for any reason, because they couldn’t see anything out there worth leaving for. They didn’t leave because they were happy just where they were, just as I’m happy just where I am.

I have become so content in the space that I live, that I can’t even tell you when I last even looked out of the window. There is nothing out there that I long to see or want to be part of any longer, why would I, as I have everything I need right here. Unlike my ancestors, I have the benefits of the modern world, which actually make it easier to live an isolated life. Entertainment is at my fingertips, the world is there too and when my health is up to it, I can join it and chat to whoever is there. I don’t need physical people here in front of me, to have company when I need it, I just open my PC and there you all are. What keeps me going is all of this, plus a lot of magic from the medical world. There is one other thing that I haven’t mentioned, and that’s a zest for life. No, it doesn’t die just because we are doing so. As my body fails me, it tells me there is still much to do and how can you give up, when you haven’t finished doing all those things still to come. I keep going, because I want to see what tomorrow will bring, good or bad, I haven’t seen it yet and I want to, and as long as I or you have that need, we will all keep going, where ever we are.

 

Please read my blog from 2 years ago today – 14/08/2014 – Too much

I hate the day before anything, be it Christmas, visits or interview, the day before is the day you wish just wasn’t there. Last night Adam was once again concerned about the whole thing, he thinks it is great that I have been asked to the interview as it shows that all I have written here is having an impact but he worries about the length of time, an hour sitting talking is a long time for me, especially……

So wrong but so right

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I’ve spent today being wonderfully lazy and enjoying every single second of it. Why? Because for the first time in the last few weeks, I am relaxed. Last night, for the first time in just as long, I also slept the entire night without waking even once to go to the loo, or from pain. I don’t think I realised just how stressed I had become and how far the relief I described the other day had gone. Despite the fact that I had a bad day yesterday, it didn’t even get to me, I made my way through one thing after another, without the slightest tension and with a smile on my face.

I had woken yesterday morning with the all too familiar pain of my diaphragm being in spasm. It has been bugging me for previous a few days, just like my bladder, it doesn’t appreciate it when my intestines are over full and causing undue pressure on it. My breathing has been a little on the rough side but like everything else, I just get on with it, taking the occasional reading of my oxygen levels, just to be on the safe side. At it’s worst, it has dipped into the low 80’s and its best I managed to peak at 95. I’ve learned to deal with it by keeping my breathing shallow by steady, as long as I don’t panic, I’m OK. I learned that one years ago, as I used to naturally panicked every time I couldn’t breathe, just as anyone would, and it always made things worse.

The pain I woke with in my left side refused to go away and by the time the district nurse arrived, lying on it so she could administer the enema, was pretty unbearable. Even when I sleep now, I remain flat on my back as my body has learned the hard way that rolling is best avoided. For those who don’t know, when you have an enema, you need to lie on your side for as long as possible, to allow the liquid to do its work. Normally, I am able to stay there for at least ten minutes, sometimes, I have to twist myself so that I am still on my left hip, but my shoulders are flat on the bed. My body didn’t want to play yesterday, I hadn’t been there for no more than a couple of minutes when my intercostal muscles started going into spasm. I did all I could to stay there but the nurse could see that I was struggling and after a couple more minutes, she pulled me up to a sitting position, as clearly, I needed air. The disappointment that I felt was huge. I was so sure that it meant that the whole thing was going to turn out a total waste of time.

When the nurse left me, I was sat on the toilet, doing what I could to hold onto the liquid, but listening to it dripping into the pan. The one good thing about sitting there is that I can put my arms up onto the grab rails on either side of me, with them being slightly higher than my shoulders, it has the effect of forcing my ribcage into a more open state, one that it can’t really fight. The enema had failed, nothing other than the liquid left me. All that pain, all that extra stress had been for nothing.

When the carer arrived at 4pm to help me have my shower, I had been to the loo twice more, but still, it was just fluid, nothing more. I did warn her that I had been losing fluid uncontrollably, and I apologised if it should happen while I was in the shower. As I stood, so she could wash my back, I felt something sliding in my back passage. There was no way that I was going to embarrass myself, so I locked my buttocks as tightly as I could and said a silent prayer. As soon as I was out of the shower because I was so worried by it, I placed my pad between my legs, before we left the bathroom. My muscles aren’t the best most of the time, but as I was pulling on my trousers, I felt what I had held onto so tightly, slipping again, this time I was sure that I had lost something, but it wasn’t much.

At first, I thought that I might just be a better actress than I thought, as the carer didn’t appear to pick up on my plight as she continued to dry my feet and apply some cream. Then the smell reached me and I knew that it had reached her too. She gently said, “Pam, do you want to head back to the bathroom?” She was wonderful, she didn’t bat an eye and just took me back into the bathroom and let me go to the loo by myself, before helping me by holding open one of the disposal bags for my pad and the wet wipes. She was so nice about the whole thing and just carried on chatting as though nothing had happened right through to our good byes. The way she handled it, left me feeling still somewhat embarrassed, but not mortified by it all. When she left, I found myself once more in need of heading to the loo, this time, my muscles held until I reached it. I don’t need to describe it in any other words than to say it was rather explosive. Five hours after the enema, and suddenly, it worked. Even though I had had an accident, I am so glad that the majority waited, as I don’t think I would have lived down that embarrassment. My body may have been working against me, as it always does, but for once, it saved me from the worst possibility.

By the time Adam came home, I was perfectly at ease, as though nothing had happened all day, other than me sitting here as always. For once, it wasn’t an act, I was at ease. This is how I was about four months ago before the flare that set me on the headlong course into carers, nurses and so on. It isn’t just that I have people around me who care, it’s more than that, I have at last accepted them as part of my life, no longer an intrusion that I have to bear, but people who are glad to help me and who’s help I’m glad to have. They have now proved to me that I am still in control of my life and they are here to do whatever they can to make my life easier, not harder, which is how it first felt. So OK it has taken me over two months to accept them, but just like when I accepted my health, now that I have, I expect that life is going to be easier from here on in as well.

 

Please read my blog from 2 years ago today – 12/08/2014 – An impossible life

I found another bruise last night, I had been in pain on my left side for a few hours and when I went to the loo before getting my meds I checked it and yes there was a new bruise. I am still holding to the 8pm slot for my meds and as the BBC normally show a news bulletin at 8 I am trying to lock my trip to the kitchen at that point. I have noticed over the last few days that taking my meds…..