Maybe tomorrow

A letter arrived the other day, that as always Adam opened for me, it’s my turn to apply for PIP (Personal Independence Payment). I have been in receipt or DLA (Disabled Living Allowance) now for years, without it, I would have found life impossible, but it’s all change in the system and from everything I have heard, it’s not all good. I knew this day would come, they started rolling it out about 3 years ago now, I, though, have been just sitting here quietly just dreading the day that the letter would land. I am so glad that I chose ages ago to let Adam open and read all my mail, as I seem to get myself so confused and frequently distressed by even the simplest piece of news. Adam told me when it arrived and over the next couple of days, laid out the basics of what it contained, but when I got up this morning to find it sitting on my desk, with a note from Adam, explaining the other information I would need, I still got myself into a spin.

I find it so hard to accept that I was once a person who ran so many aspects of an international business, and now, a simple letter puts me into a panic. How has my brain diminished so far? I know from my writing and what I do on Twitter, that I can still appear as an almost normal intelligent woman, but I know, I’m not. Ask me to do anything, even the smallest thing that is outside of my normal everyday life, and I am beyond lost. The instance I am even faced by the idea, that I have to do something unusual, the panic begins. I have had so many experiences over the last years, that have taught me that my brain now has only one role, that of the trickster. It will misread, mishear and confuse me at any opportunity that it can find. From the simplest of things like getting the times wrong, the ones that are right there in front of me on the screen, for the evening’s TV viewing, to not being able to see that something is advice, not a fact. I quite simply, can’t trust myself about anything, and always check with Adam, that I have managed to get it right, before, I take any action. It’s easier that way, as if I don’t, I just land up wound up and in tears, over my stupidity. I wouldn’t trust me to do anything, that I don’t have the opportunity to check it all not just once but ten times, and even then, it doesn’t surprise me, that I get it wrong. Worse still, I all to often, don’t see my error until it’s far too late to fix it.

I can admit it now, but the last four years that I was working, I wasn’t. I knew things were falling apart, so I set to, and I automated almost everything that I had to do. I worked from home, so I spent the first three months writing computer program after program, that did every aspect of my daily work. By the end of my first year, I had reduced my actual physical daily work, to half an hour. Yes, I had ad-hoc work to do, but I had been doing the job for 10 years by that point, there was little that I hadn’t done before, so I at least had the basics required sitting at my finger tips, it was just a case of updating it. I didn’t feel guilty at all, that company had worked me into the ground for years. It was purely due to my teaching myself to programme, that meant I could even produce what they wanted before I was housebound. They wouldn’t spend the money on software, so I had to build it. I was also on 24/7 call out, to fix, patch and keep running, a phone system that was officially obsolete and I kept it running for 5 years, 2 years past the point of dead, without a penny more on my wages, it wasn’t unusual for me to spend my entire evening, or the bulk of the weekend, working on, no extra money and often, not even a thank you. They had used me for years, so no, I didn’t feel guilty doing what they asked, just not in the way they expected it to be done.

When I was made redundant, I knew inside that no one was going to employ me. I knew because, I, wouldn’t have employed me, but I tried. 18 months on, I accepted the truth. My brain, was no more up to it, than my body was able to getting me out of this house. Four years on beyond that, and I am the proud owner of a useless lump of flesh, that isn’t worth the space it takes filling up my skull.

At first, it was just the different, the unknown, the things that I wasn’t comfortable with, that upset me. Now, even the predictable throws me into the depths of despair. PIP is totally unknown. The person I will be speaking to is totally unknown. The questions they will ask me, well I might have a clue, but I know already, that I will at some point, land up in a stuttering mess. Talking to people on the phone, is daunting. What if I get someone who’s accent I can’t understand? Will they have the patience to let me think and to talk? Will they be upset, if I keep asking them to say things over and over, because, I don’t understand? If I get the questions muddled up, can I fix it later? I hate the phone even more than I hate meeting strangers face to face. What are they thinking? Are they laughing at me? Shaking their head and rolling their eye’s? Are they taking the mickey out of me? Why do I have to do these things? Who sits and thinks up the best way of upsetting those who don’t have the mental capability to deal with such a situation? Why can’t they just send me a form? Forms are good, you have time with a form, you can practice what you want to say, over and over, choose the best and write that one down. Forms are good, I like forms.

I can’t do this today. Not today, maybe tomorrow, by tomorrow I will have had time to think. I will have had time to talk to Adam, to go over it with him. I wish I had understood better what he was saying when he told me this letter was here. He makes light of everything, I guess he just hopes that I will be fine, this time, I won’t need him, this time, I’ll just do it. Why would he think that? No, I can’t do this today. I am too agitated by life to step into something new. Maybe tomorrow, maybe then I will up to picking up that phone and typing in those digits, maybe tomorrow, I will be able to actually talk.


Please read my blog from 2 years ago today – Staying happy

Sorry, sorry for going over so many things in the last few days that have been so serious and somewhat a downer, it’s a fact thought that chronic illness has so many things attached to it that make it easy……





Caught in a quandary

I decided that I had nothing to lose, I had what I needed here in the house and today, was as good a day, as any. Adam, of course, wasn’t so sure, he questioned, and double checked my knowledge of my drugs, then agreed it was a good idea. I thought that as I had enough drugs in the house, that it might be an idea, to run a test and for just 24 hours, to increase my slow release morphine. Last night and this morning, I have taken one extra 10 mg tablet. As I explained to Adam, I take 10 mg fast release boosters all the time, so a slow release tablet was going to affect me even less and, was perfectly safe. It’s kind of hard to know what, if anything that it might have done, as I had a bad nights sleep last night. Without a doubt, my pain levels are slightly lower, but I wouldn’t stand up and declare it’s a miracle, the pain is still too clearly there for my liking. The prolific numbness and pins and needles appear slightly less, so yes there is an improvement, what doesn’t fit was last night’s sleep.

Morphine is renowned for causing nightmares and vivid dreams. Between 9 pm and midnight last night, I had an odd vivid dream, I know that could be caused by anything, but when I was popping booster after booster a while ago, I had vivid dreams. When I forced myself, to cut them down, regardless of the pain levels, the dreams went away. Once more, I find myself unsure and without clear direction. I don’t have a big enough supply of spare tablets to keep testing for a few days, so I am left with that life long quandary, what to do for the best. Why does life have to be like this? Why can’t just for once, the choice be simple, straight forward and without problems? I have been living for months now, with my pain and sensations way above what any sane person would find acceptable, but I can’t find the answer to them. I am already on the two most common drugs prescribed for dealing with wild sensations, such as the ones I have. Gabapentin and Amitriptyline. Apparently, Amitriptyline is not effective above the dose I am already on, but it might be worth asking for the Gabapentin to be increased, as I’m not quite on the highest dosage.

It was in fact, one of the things that I discussed when I was at the pain clinic, but, wasn’t pursued at the time. I was in one of my stroppy confused states, and Adam wasn’t with me to assist. The Doctor managed to wind me up within minutes of my arrival, and as I got stressed, I became more and more confused, argumentative and desperate to escape. It started over my not having the memory to be able to tell him, when I last saw my Neurologist, then went rapidly downhill from there. Clearly, he had no understanding as to what MS does to the brain or the effect it has, on our ability to deal with situations we’re not comfortable in. Within two years of my diagnosis, they gathered the information to confirm that I have extensive brain damage. There was even then, clear signs that I had frontal lobe damage and it was causing emotional instability, especially when combined with anything to do with my memory, it is a bit like living with attention deficit disorder. Hence my inability to now deal with change or people I don’t know, the reason that Adam is now always my link to the outside world. In some ways, I wish that meeting had been filmed. It was a perfect example of my brain, spinning out of control and leaving me, far, far behind it. All that aside, an increase in my Gabapentin, might just be the answer I’m looking for and clearly worth discussing with my GP.

On New Years day, just as I did on Christmas Day, I spent the whole day drinking bucks fizz. It took me from when I got up, right through to the evening to drink an entire bottle of Cava, as Adam doesn’t touch alcohol at all these days. I know, before anyone says anything, that alcohol isn’t the answer to pain or anything else. Yet the combination of a booster pill, both morning and afternoon, with the steady, slowly drunk diluted wine, worked wonders for me. It was a bit like stepping back in time, as the closest I can put it, is to say that I felt as I did about six years ago. On New Years Day, after days of planning, I even managed to do some cooking. So OK, it doesn’t take a genius to cook scrambled egg, and I did drop one whole unopened egg on the floor, but I did it. I also cooked the steak, new potatoes, mushrooms, cauliflower, broccoli and white sauce, later in the day. All of which remained where it was meant to be. I haven’t even attempted to do such a thing for a really long time, and to make it, even more, surprising, I did it all from my wheelchair. Yes, I was left tired, but I enjoyed it. My self-medication got me through two days of activity, that would normally leave me in incredible pain, exhausted and unable to function, I was only half way there. I don’t know if there is some kind of answer hidden in all that, something that might help me in the future, but it did make a difference, one that anyone would have been able to see. There is no way that I could do it again today, as today, I am still paying for it.

Last night, I was back to my normal self, I went to the kitchen, to do nothing more than open a few salad pots. Once I had juggled them out of the fridge and picked them back up off the floor, I then  placed them on my lap, so I could wheel them to the counter. As my lap had a clear slope and was covered in velvet, why I thought they would stay there, I have no idea. Of course, they didn’t, I had to pick them up for a second time. Once safely positioned where no more accidents could take place, on a nice level surface, I started to open them all. First two, went fine, the third, landed up on the floor, this time without its container, it was still in my hand, the tomatoes, mozzarella and olive oil were all over the place, including over me. Nothing annoys me quite so much as wasted food, especially, when I had splashed out on what was supposed to be the last treat of the holiday season. I had to call Adam to rescue me this time, there was no way I could clean it all up, as I couldn’t even move my chair, without squashing mozzarella balls into the floor. My growing exhaustion was beginning to show, no matter how determined I was to keep going, my body was screaming stop, I had to leave Adam to complete what was supposed to be dinner before I ruined it all.

That is life with chronic illness, one day, you can appear almost normal, the next, you’re can appear totally useless. I know appearances have almost nothing to do with anything, but when you can pull something off, in front of those who matter to you, well you feel good.The things that suddenly become enjoyable and noteworthy when you are ill, are often the simplest of things. I know that most 11-year-olds could have done what I did on New Years Day, yet I am still left feeling proud, for doing what once I could have done without thought. Life takes on a whole new perspective, we become proud of doing almost nothing. Excited, about what most see as a chore and elated, despite getting those tiny things wrong, well it was only an egg. But then yesterday, a simple carton totally defeated me, not once, but over and over again. This world we live in is truly measured by things that make little, or no sense at all.


Please read my blog from 2 years ago today – 04/01/2014 – Getting to me and you

It appears I am having one of my do anything else I can find to do rather than what I should be doing. I woke early this morning, just before 6 am in pain and bursting for the loo, the second was easily…..



Facing the facts

I realised after I had completed yesterday post that I hadn’t mentioned what the Doctor had to say, eventually, about my mole. I phoned on Wednesday afternoon and luckily didn’t get the somewhat moody receptionist who I have mentioned in the past. It was to her email account that I had sent the photo’s. I did actually call back on Monday afternoon to check she had received it, as I had heard nothing. The receptionist who answered the phone had to check but then confirmed that it had arrived. By luck on Wednesday when I called back, my Dr was free to talk to me. He was apologetic, as he had asked that an email was sent to me, to let me know that he thought there was nothing to worry about. Because of the fact that it had changed, he wanted the hospital Dermatologist to check it out and had requested an appointment for me. All of which he said had happened on Monday morning, so when I phoned on Monday afternoon, she could have passed that message on to me, or taken the hint that I was seeking an answer of some sort and sent out the email as she had been told to. I had half expected the doctors response and that I would once more be on my way to the hospital to see yet another consultant. So, it’s just a matter of waiting for an appointment to eventually arrive.

When Adam was home for lunch yesterday, he mentioned that he had requested to have next Tuesday off. I couldn’t for the life of me think why he wanted such an odd day off work. After all, taking the odd Monday or Friday, allows a long weekend, but a single Tuesday is just odd. As far as I could remember there wasn’t a reason why he would want to be at home that day, but with my memory, well there might just have been. He said that it was so he was here for the appointment with the MS nurse. He thought that I might like some support when he came to see me, which was really nice, but he was coming to see me next Monday, not Tuesday, well that was what I thought. It is, in fact, another good reason why Adam normally opens all my mail or at the least reads it. I had got the wrong date in my head, it’s the 22nd, not the 21st. He also thought that it might be a good idea for him to meet one of them so that there is a note on their records that he is now quite clearly my carer. Hopefully, that will make things easier going forwards as they will at least know who he is if he needs to contact them on my behalf. I know he is right, just as it’s right that he now attends all my hospital appointments with me, but somehow someone coming to the house felt different. It took me a few minutes to get it all straight in my head and I worked out why I felt the response that I did. The flat is my domain, I am so used to the idea that this is my world and that I can cope within it, that I hadn’t even thought about the fact that this was an outsider, someone who is as likely to confuse me as many medical people do.

Every time that the MS nurses arrive, they start their visit with a questionnaire that covers all the basic things. Am I still able to dress myself? Can I prepare my own meals? How am I coping with my medication? Can I still wash myself? The list goes on and on, but for the first time in years, my answers are going to be so different. I hadn’t put that much thought into the time scale over which the most recent changes in my health had happened. Thinking about it has made me realise just how stark those changes are and how quickly they have all really happened. Our last meeting was just a year ago and it is like chalk and cheese, I have at last reached the point that not including his love and emotional caring, as I said the other day, without Adam, I wouldn’t any longer be able to cope at all. I don’t think that I have ever actually written or said that before, but it’s totally true, in one year I have gone from independent to reliant and it’s a fact that can’t be ignored. I guess that I have been playing games with myself, tricking myself by skirting around the actual facts and it is all too easy to do. Saying to myself that I have lost my independence and saying that I can’t cope are two totally different things, and their psychological impact doesn’t compare at all either. That is the equal beauty of our language and a huge danger zone for those of us dealing with medical issues of any sort.

Fact, there is always a nice soft cuddly word that sounds similar to those nasty spiky ones that none of us wants to use. It is too easy to sit here and make it sound as though there is nothing really that wrong with us when the truth is the opposite. There is also a huge difference between deluding ourselves and misleading our medics, the second could actually be deadly. As long as we are hiding the truth from ourselves, how on earth are we going to get the treatment and care that we need and probably deserve. Two days ago I sat here analysing my loss of independence. I wrote a whole post about it as though what I was talking about was being unable to change a light bulb, I just didn’t want to face the truth. It has all come to ahead simply because of my wheelchair, but that is now clearly just another symptom, it wasn’t the answer I was hoping for. Somewhere in the back of my head, I had this picture of sitting down over those wheels and the world would suddenly become shiny and new again. It wasn’t, and I have to admit that even an electric chair isn’t going to have that effect either. It will make life so much easier, but it isn’t going to give me back either my independence or my health, or make it possible for me to cope with life by myself. No matter what aids or gadgets we acquire, I am never going to be able to cope with normal everyday life again, fact.

It has never been my wish that Adam should leave me, but my measure has been for so much of my life, thanks to my first husband, “Can I really manage on my own?” Being able to answer “Yes” to that question was so important to me, that it has remained with me right through the last 26 years. Until the last 6 months, I was still able to answer it with a “Yes”, well there were a couple of tiny issues, like emptying the bins, but I was sure I would find a way around them. But for the bulk of everyday life, it was “Yes”, now it’s a “No”. I have been fooling myself in the last few months, no, “lying” is actually the correct spiky word and the true one. I was lying to myself, as the truth was just too painful for me, but I don’t have a choice any longer. I have become that person who has to be cared for, as without it, very quickly I would die. How long would it be before I took the wrong drugs at the wrong time? How long before I developed an infection because I hadn’t been taking care of myself, by washing and showering without someone to make sure that I did? How many important appointments would I miss? How would I manage having to speak on the phone on my bad days? How could I cope with dealing with people, without floods of tears or confusion? How could I clean the house? Do the washing? Sort out the shopping I can’t even lift? How would I just deal with everyday life? The answer to all of those and many more is always now in the negative and my need to no longer be on legs that don’t carry me, has just made every single one of them harder. I can’t cope on my own, full stop.

So I have said it! I have admitted it! Does that mean I accept it? Not quite yet, but I am getting there. Well, I hadn’t admitted any of it until in the last few minutes, it will take longer than that. Pouring my mind out onto the screen may be my way of writing, but it has a downside. I can’t control my brain and it often exposes things here first, then gives me the task of dealing with it. Yep, I hate my brain!

Please read my blog from 2 years ago today – 18/09/2013 – Professional patient

I took my first boosting 10mg morphine tablet, the pain in my ribs was really bad and yet again finding peace to just sit and watch TV just wasn’t there, so I took one. I couldn’t believe not just how well they worked but also the fact they worked really, really quickly! I don’t believe that I have…..

Who copes

Sometimes I sit and wonder just what is the worst part of what is happening to me, or that has already happened, I try really hard to find an answer, but I never find one. I can find and name a list umptin times the length of my arm, that other might say must be the worst thing that has ever happened, or the most dramatic, or even the most painful or unbearable, but they are all other peoples lists, not mine. Everyone’s lives are all of those things at time and although I have had many tell me otherwise I just don’t see my life as that different or that odd. How can I, when I am the one living it? I understand how others see me, but I can’t see myself truly in their eyes, as they are judging me in comparison to their lives, lives I haven’t lived. I know one thing about myself that does seem to be different from others, I have no comprehension of hate, or a desire to blame anyone for anything and I don’t understand why?

I think I was born a content person, someone who just accepts what happens and adds it into the knowledge I have of the world. My mother even says I was the most content child she ever knew, I didn’t need entertaining or anyone with me, I would just entertain myself, something I also saw in my daughter. As a teenager, I would describe myself as a seeker, my parents called it disobedient and many other things, but I, well I was just out there wanting to know why and who? Where ever I found myself, the right side of the tracks or the wrong, I was still content, not scared or worried or anything else, just there absorbing as knowledge everything around me. A fair statement really of the rest of my life, where my parents got it wrong wasn’t that I had gone off the tracks, I was only visiting finding out and returning every time with that bit more of an understanding of life. Where ever I have lived, from mansion to bedsit and on, I have always been content, even now when housebound I am content, accepting of my situation and making it daily the best day that I can. What I can’t work out is do I have something missing in me, or something extra, that makes me just happy to be, happy as I am right now?

I constantly come across people who are clearly finding life with their chronic illness extremely hard to live with, they can’t find a way forward as they can’t let go of the life they had before and have no interest in work on building a new one, as they refuse to accept what has happened. Some have actually become really angry with me for just saying that it is possible to be housebound and happy, others totally understand and have achieved it themselves, what makes the difference I think is that ability to be content in life. We have all met people who seem to never be happy with their lot in life, they want the bigger house, bigger car, more fancy holidays, some are angry at life for not giving them just what they want, just because they are them. I have never expected anything from life, it is what it is and I have made the best out of what I have, that includes being housebound.

For me to sit here and simply say you have to learn to be content is like asking ice not to melt, I actually do really believe though that there are people who will always take illness in their stride, they are the ones who are prepared for it. Something I have noticed across the board is that the more varied and the more extensive someone’s life experience is, the easier they seem to find making the step required to making their own life happy with illness or without it. What sort of person you are clearly makes a huge difference, but I honestly think that our medical profession could and should, start to prepare people from the day they have our diagnosis. I am lucky, I did it for myself, but no one once sat with me, even when I asked them to and painted a picture of what my future might be. Through out those first years all I was ever told was that no one could tell me what would or wouldn’t happen, I understand that they don’t know totally, that they probably didn’t know I would be housebound so soon, but I don’t care what they say, they knew it would happen eventually. Having time to prepare, not just your home and lifestyle, but more importantly your mind, would make a world of difference, especially for those who aren’t able to make that mental step alone.

I can’t teach anyone to be content, I was lucky, I was born that way, but I still didn’t just accept it without any impact at all when it happened, I found my way through. My blog is filled with so many things to help, but nothing I could write can make up for that missing step of the years of preparation that I think we all have a right to, rather than doctors who just smiles and tell us nothing. It’s time that when someone is diagnosed with a progressive condition that it is made clear by the people who know, just what might happen in the future and those who need it, get the help to make those steps to something we are all entitled to a happy life.