Back to the beginning

I woke up tired, with no reason on earth other than what I do daily online, as to why I couldn’t go back to sleep. It was genuinely, the very first time where I almost did, what I have been tempted to do so often. I honestly, don’t remember ever feeling quite so drawn to disobey the clock and say “To hell with it, I need to sleep.” There has been through all my life, this drive to work, to do things as they should be. It doesn’t matter if it is paid work or just the daily work of life, I always have to do what is right. I know that it started from childhood, from my parents demanding that life ran to two things, the clock and work. Work covered everything from, of course, going to school, homework, working in my father’s business and household chores. It was something I was grateful for, as it gave me a structure to hold onto, throughout some of the darkest years of my life. When I fell into a depression that twice nearly took my life, structure or as I call it now, routine, kept me going. Housework had to be done, the children cared for, the garden kept perfectly, clothes to be made, bread to be baked and the list went on, there was work, and always, more work. When I found myself housebound and working from home, I developed a routine that in many ways, hasn’t changed since. Clearly, part, at least, was governed by the work I had to do for the office, the reports that had to be on time, the bonuses that had to be calculated and so on. More than that, though, I developed the structure of living totally from home. I may no longer be paid, and my hours have diminished greatly, but routine has been, and is still, at the heart of my life. There are hours by which things have to be done, the only one that put’s any sort of pressure on me these days, is writing this. It has to be done before noon, else wise, I know I’m letting others down, and that doesn’t sit well with me, in any way.

Not long ago, I know that I mentioned in one of my posts, that I am now so tired, that I knew I needed more sleep, but I had no idea where to find those hours I needed from. Well, I am beginning to piece things together, that will hopefully allow me to take more time in bed in the morning. My routine has worked so well for me, for so many years, that letting go of any part of it is always hard. I have, though, done so regularly. I have had to over and over again snip away pieces here and there. Reducing this, or that, bringing it down to a size, that I can cope with as my health has slipped, further and further down. For months now, I have been having days when the whole things, just feels too much. The pressure that I have been putting myself under, is once more too much, but no matter how many times I have looked at it, I could find nothing that would allow me more spare time. I have nothing left that I am comfortable cutting away. Then last month, I discovered something, that I hadn’t noticed happening at the time. Every time I have reduced my “work”, I have cut away items from my list of tweets. Over the three years, I have been on Twitter, I have reduced my load from sending out, at least, one tweet every ten minutes, 24/7, down to 4 per hour. No matter how much I cut and tweaked, I never seemed to have any more time. What I hadn’t realised was that the time I produced, was being eaten up by my blog. When I started blogging, I was satisfied to have written as little as 3000 charters, I am now not happy until, I have found at least 7000, usually nearer to 8000. I have often found myself sitting here almost banging my head against the computer screen, as I simply couldn’t find anything else to really write about. Inspiration would appear and my then 5000 charters would explode to 9000 plus. It is no wonder, that I never freed up any time. So this is my first change. There are no longer any rules about how long a post can or can’t be. From here on in, a post is the length, I am content for it to reach. Some might be just a couple of paragraphs, another, much, much longer. From here on in, my daily health will govern what I do, rather than some mad rule about characters.

Outside of what I do online, my biggest problem for years, when it comes to getting enough sleep, is Adam. He is so bad at getting up and has since we married relied on me, to see he was up for work. I know for a fact, that if I just woke to see him out of the house, then went back to bed, it simply wouldn’t work for me. Without a doubt, that is the logical point in the day to extend my sleep, as it’s the point where I don’t want to wake. The sleep I take in the afternoon, is often not true sleep, more a doze, and in fact, if I were to sleep an extra hour in the morning, I probably wouldn’t even need to try again later on. I am so used to dragging myself through the mornings, fight tiredness, which slows down everything that I do. On the odd day where I have been awake, everything flows with ease and I complete my tasks with time to spare. Just being able to sleep one hour longer, could change things for me totally. Last night, I broached the subject with him and we have decided, that we are going to give it a go. He will set his alarm on his phone, which with my earplugs in, I don’t hear. There are a lot of things that have changed in our lives, that I wasn’t allowing for when I was worrying about him, not waking for work, the biggest being just simply, maturity. I am still going to set my alarm, but for an hour later, to start with and see how it goes. Any longer than that, I put myself outside of what my pain medication covers, trust me, waking every day in pain, isn’t a good way to set yourself up for anything.

I can’t live without routine. Although I had already removed the time restrictions for all tasks, I hadn’t looked a the most logical change of all, the time spent writing. I honestly don’t think anything will be lost, as on my inspired days, the words flow freely and fast, really fast. If there are any rules about writing, that is probably the one above all others, that should govern it, internal inspiration. We all need routine, but it should be us running it, not it running us.


Please read my blog from 2 years ago today – 19/12/2013 – Just another day

I woke this morning almost unable to move, every part of me was not only stiff, it was also in searing pain, especially my back just above my waist. I kept trying to find the strength to lift just one side off the mattress…..





Seven steps

I always read all the comments over my different posts from the day before and I started writing a response to my post in this blog left yesterday. To date I have always said that I know what works for me and is often the way it was as I wrote that I realised that I do know where the process of improving my life started and when I wrote it, it all pulled into place, the light-bulb went on above my head and I saw the whole thing in simple to follow steps that made sense. I have written bits and pieces of it all over the place in my blog over the months and although I knew they were written it still didn’t seem possible to put them into logical steps. Well here they are….

Everything starts with structure, the structure of your day form the very start of that day the time you get up. When you are housebound or just unemployed it is all to easy to switch off the alarm clock and never turn it one again. This is a terrible big mistake, you have to choose a time at which you get up every day, no lie ins because it is Sunday everyday has to start at the same time to begin with.


Brush the dust off your alarm clock, choose the time you will get up and stick to it. For me that is 7:30, no that wasn’t the time I got up for work I was up 3hrs earlier than that when I was working in the office, this just seemed reasonable for the start of a day,


You also need to set a reasonable bed time, one that will let you get enough sleep to be able to get up. For me that is between 10:30 pm and 11:00 pm I like to watch the evening new but it has more to do with that being a long enough day without the danger of me falling asleep on the settee.


If your condition requires you to rest or sleep for a period of the day well scheduled that, I know I have to sleep in the afternoon, through trial and error I also know that I need at least an hour or more. I worked out that I didn’t need more than 2 hours I just took it somethings. So I bought a timer which I set each afternoon when I go to bed for 2hrs, if I wake sooner fine I get up but I always, like with the alarm clock get up when it beeps at me. Spend the next week getting used to the new routine of sleep and awake times. That week should have settled you to the sleep routine and you are ready to move on.


You now know how much time you have to fill in each day, but there will be daily things like showering and eating, you need an idea of how long that takes as if you plan too much in your day, you will be disappointed, so be realistic. Step 4 is a ‘To Do’ list. You first list will be a little odd as it is your test list, put everything on that list you now do on a normal day, I don’t know what you normally do but if you do physio, put it on the list, housework on the list and so on with rough times, even put on that list the time you spend doing nothing but watching TV. List complete, the next step is to set that alarm knowing that you have your list, for the morning.


This first day tick off everything on your list as you do it, adding the true time it took so that in the evening you can see how what you thought compare to what the truth is. If you managed everything then there is your first achievement, I know it doesn’t sound like much to do what you already do but it is, because it shows you are realistic about your life as it is, if you are trying to cram in to much then change your to do list, I am quite sure all of you will get those timings wrong on a lot of things. Now is the time to look at all the things you do now that you have to and what you are doing because you are bored or don’t know how else to fill your time. I used to spend more than half my day playing computer games, as I had nothing else I thought I could do. I expect that is something that will be reflected in some form in most lives and it is that time that has to change. That is step 5, what do you want to change what is it you don’t like, make a list of those things. My list of what I wanted to change was huge and daunting to say the least.


This is in someway that hardest step because it involves us all being honest with ourselves. What is it you don’t like and what is it you would like to change in yourself and your life. That is where your first ‘Desires’ come from, this wasn’t that hard for me as I wanted to stop being lazy and just playing games. I knew I was lazy, I knew I could do more and I knew I wanted to write. You might have a hidden desire to do a craft or learn French, but be realistic, I wasn’t going to be able to go back to an old hobby I had of needle point as I didn’t have the dexterity. What ever that Desire is or even if you can’t come up with one, schedule into your ‘ToDo’ list a 30 minute window a ‘find out session’. Spend those 30 minutes finding out online what you need to be able achieve your desire or goal. If you really don’t have a desire, then I suggest you start from something you used to do and enjoy. Sit down at your PC with a pad of paper and start your research, enter it into Google and let it, take you on a discovery session. You will be amazed how many things are achievable for free. One I used to do were online competitions, free with an extra reward of the odd prize. Although I at one level don’t like voluntary work, there are a lot of charities and organisations who need people who are good at admin style work that you could do from home and for many that is a great way of being part of something, even if it is only and a few hours a week. Do not accept that you can’t reach your goal without spending huge amounts of money, because unless you are wanting to do a degree or become a diamond polisher I am sure you will find it if you look hard enough, you might actually even find you come across something you had never thought of doing, that takes you in a new and interesting direction. Each day repeat that 30 min window extending if you want to an hour. Do this for a week and I really wouldn’t accept anyone who said they didn’t find inspiration in that week to write down a ‘Desire’ they really want to achieve. That is also a major achievement.


This is the final step after this you should be able to change your situation enough to change the way you feel about yourself, your condition and your future. Take your ToDo list rewrite it, put in instead of the things you don’t like about it, short sessions starting at 30 mins of working on your ‘Desire’, everyday that you have ticked off all your items on your list you are achieving. It won’t take long until you throw away the ‘ToDo’ list because you will have settled into the routine and your day will have structure, you will also know your desires and your achievements. These are the core of what keeps me mentally active, involved, busy and happy. What have you got to loose by trying. I lost only what was getting me down, I also learned a lot about my illness and what it will allow me to do and not do. Most of all I found happiness in where I am.

Achieving structure

It has been a strange week on one level it has been incredibly normal and quiet on the other it has been really hard and stressed, which is not normally for me a good place to be but I think apart from being a little tired I have emerged rather unscathed by it all. Heading through life with no direction has become a feature over the last few years, I never was a great one for detailed plans but I always had a general idea of where I was heading in the far, medium and near future. On waking I would plan my day a head and work my way through the list, the final goal of being simply able to say all done. When you have a working life or children these are easy plans to make and follow as there is a set reason why you have to write a report or get the sports kit ready for the next morning, life for most of us has a natural structure which takes little thought or consideration, but all that disappears when you are chronically ill, housebound and unemployed.

I consider myself to have been very luck to have stepped slowly to this final position where I am, I gradually worked more and more from my home and less and less in the office, the gentle slope over several yrs to the stay at home for ever began 5yrs ago suited me well and slowly showed my company that they were loosing nothing by my not being sat at desk in their offices, it in fact freed up a large space where all my files and my meeting area was, so in a way it suited them too. My biggest hurdle was when I was made redundant in September last year and it was at that point I had to make a clear decision of what I was going to do, to give my life purpose and structure which like it or not we all actually need. All of us can slope around doing nothing for a while but you can’t do it for ever without it eventually doing you more harm than good. I firmly believe if 10yrs ago when I received my diagnosis, I had done what I have seen some others do, just sitting down waiting for death, that I would have found it or I would now be sitting propped in an invalided chair drooling in a corner somewhere, I made the decision, not so much to fight but to continue living, they are two very different things and second was the one that seemed more my style.

If you are at this point where work realistically is slipping out of your reach, I recommend 100% do not allow yourself to sit down in front of a TV during the day. TV even at it’s best, which for me is any informative Documentary especially the history ones, will rapidly reduce you to being the image of progressive illness that haunts all of us in the small hours, when sleep won’t take over. Do not let it happen. I still 10 mths on send out applications for work, I know that getting a job that I can do from here is a slim possibility but it is still a possibility that I don’t let go of. I actively set up loads of job searches and religiously read through and apply to the mountains of emails that arrive in my in box each morning. I knew though by December last year that the possibility of my starting work in the near future was slim and although fun I couldn’t just play games on my PC for ever, I needed more. Years ago I had loads of hobbies, but all of them where in the craft field and that wasn’t possible because of my dexterity, but this may be an option, even a possible money earner for you. With that option closed I decided to start writing, something I have never done before, well yes I wrote as school and I was good enough for the School magazine, so I gave it a go.

At the basic level blogging can be done for nothing, important when there is no income, I pay a small sum for this account as it allows more options, I am hoping that the ads on the pages will supply enough to pay the costs, but they bring in very little so far. (Do me a favor click on one when you finish reading, it will supply a few pennies for each ad click.) I found quickly that I first – loved writing, second – others wanted to read it, third – I could fit it in a daily scheduled point, I believe that the third point is the most important for sanity to continue.

The second part, Twitter, many I know have found me by that route, Twitter opened up a new audience and a new interest. Even for those that don’t’ blog, when you are housebound twitter is an amazing, free tool that lets you be in contact not just with our friends and family but to meet new people, some with your medical condition or interests. It would be at my top of recommendations to anyone who is housebound, we all need human contact, carers and family can’t be around 24hrs a day but Twitter never stops.

I may have no income other than what the state pays me but I have a full day everyday. I do as much or as little and I feel I am achieving and that is the big secret of dealing with a Chronic illness, and I suspect old age as well, you have to keep achieving, keep you brain active and keep you world interesting. When the word bored enters you head, then you need to change things push yourself in a different direction, in 5yrs of being at home I have never been bored even now that I am unemployed, my time is still filled with enjoyable activity, well apart from the job hunt that has got a bit tedious I admit, but I have to look and I don’t know anyone who doesn’t have one daily task that they don’t like. We can all achieve things, even if you are unable to do what I have, or you are bed-bound there are still achievements to aim for, these days you can study and obtain qualifications lying down or sitting, makes no difference, thanks to the internet we the invisible humans of the world can become highly visible and continue to be part of it as well. Search on line there are millions of free things that will inspire you and fulfill the possibility to achieve.

The game of MS

Most women I know think that they are better at multitasking than men, well I have seen several documentaries that prove that in general to be wrong. I don’t believe them, sorry but I have all my life been able to do loads of things at the same time. I remember my first husband could get his head round it and used to challenge me from time to time, I would be sitting knitting, watching TV and browsing a magazine and he would suddenly demand to know what was just said last, the storyline of the program, what I was reading and to see my knitting for errors, I always obliged with the required proof. Now it sounds absurd that I did any of that without thinking.

Slowly skill that you take for granted start to disappear, the gradual step by step theft of you life I really sneaky. Progressive Relapsing MS is very much what it says it is, flares or relapses are no fun, they hit you like a truck and can leave no long-lasting changes or even dramatic ones at the good end or they steel and don’t return the missing function at the bad end. The majority of people with MS are Relapse Remitting and after a flare they will in time be restored to how they were before for the flare, or close to it, depending on the individual. I have had loads of flares and don’t let anyone tell it is like having the flue, a helpful analogy made by a nurse on one of my many hospital visits. It is the Progressive element that is to me the hard bit to work with.

I used to love knitting and I was fast and good at it, I could knit a mans Aran or Fair Isle in two weeks of evenings, it was relaxing, kept my hands busy not eating and productive in clothing the family. I noticed around the age of 30 that I was slowing down, speed suddenly cased mistakes, dropped threads or split one, it wasn’t my memory but my hands were no longer able to run totally on autopilot so the magazines were no longer read. The number of hour I could knit for decreased as well as my hands became painful and the weight of the garment became exhausting to hold. My two week project became a month or more, until it all became to much and the thought of spending week after week knitting the same pattern and item, destroyed my hobby.

As with any progressive illness it is not only your health but everything you do, that is slowly bit by bit taking away. For some I know this is really hard and frustrating to deal with, it was for me as well. Another of those things that no one spells out for you, no one says make the most of any hobby or pass time now, as you may not be able tomorrow, oh and I do mean tomorrow. Life for anyone able bodied or not slows with age, but it felt like I had suddenly found my body to be that of someone twice my age, it hurts. These are the invisible pains, not like the spasms or fatigue, these are the ones that cause pain in your soul and if you let them, they will eat away at it. No positive attitude will stop it, it takes work, conscious work, and what is left of my diminishing energy. To make my life bearable I have to keep my mind busy and that’s actually easier than it sounds. I have tasks to do each day, like writing, I set a time by when things need to be done by and they are realistic. I allow my self five hours from waking to completing both my blogs and sending out all the twitter feeds. Only a few years ago I would have allowed may be two hours, the extra time is for my wondering off to other web pages, getting lost reading other blogs and tweets. I never let myself just sit in front of the TV when I am alone, I don’t allow myself to let my mind numbly drift it has to have a purpose. The afternoons vary a little in structure but if Adam is at work I make sure I play games on my PC go on picture searches, anything that simulates and occupies me whilst awake, not allowing myself to dwell on what I cant do, but to work on what I can and what I could.

Progression will continue and so will I, as long as I can out wit it, adjust to it and keep adjusting to it’s game, Albert Einstein said “You have to learn the rules of the game. And then you have to play better than anyone else.” That is my intention.

Traveling with the flow

I don’t know how others write but I don’t always pick the subject I allow it to pick itself. I sit here and I type, delete and type again the first sentence. Once I am happy with that, I let my mind flow in the direction it chooses and the subjects that appear. Someone the other day told me that me writing was well structured, which made me laugh. In general the structure is probably the last thing I think about. These are the post which also seem to attract the most comment and the most attention. It is a natural thing for me to just go with the flow, I have always done it but not always with good results.

As a teenager I was led with ease into doing things that I would never thought of without a suggestion from my friends. I was the one in the group who always did what the others were too scared to do themselves, just in case they were caught. I stole the sweets and crisps from the corner shop, the alcohol from my parent drink cupboard. It was me that climbed on to roofs and into neighbors gardens to fetch the ball. It was me who bought the first LSD for the group, the first drink in a bar when not quite 13, and that list goes on and on. I remember my parent asking that never ending question of “why?”, to which I never had an answer they would accept. They clearly had no understanding of the world that I was growing up in or how it had changed over the 30 odd years gap since their childhood. 13 or 14 year old teenaged girls in the 70’s didn’t sit at home reading books, but neither did we do what they feared. Although I always had to be in before dark, there wasn’t anything in their minds, which couldn’t be found in the light. They never found a needle mark on my arm because I never touched that level of drugs. I never got pregnant because I had a brain and I was on the pill plus used condoms as well. I didn’t turn up dead, as I never went anywhere by myself and I didn’t walk blindly into anything.

As a parent I now fully understand their concerns but they were wrong, just as my best friends mother who would handed us joints when picking us up from school, was wrong. I will equally guarantee that my children will also think I was wrong. Being a parent I think, is the only time in life where you can’t just go with the flow, you can’t just let things happen, there is a structure you have to accept, a role you have to fulfill, the requirements state that you have to being wrong.