On the up

I am doing well today at what I am not sure as I keep forgetting but I feel up and that is good. I remember having a clear plan this morning of what my day was going to hold but I lost it somewhere along the way. I managed the shower and hair wash and I am up to time with all the normal things but I know there is something missing, something that was clear when I got up but just 3 hours on, I’m lost. I often have days like this, so not knowing where I am and where I am meant to be, isn’t new by any stretch of my imagination but I can say clearly that it is a good day for one reason and one reason alone. I don’t care that I haven’t a clue about anything! I know I have mentioned before that I frequently thing that my forgetting is a strange twisted gift, as well, if you can’t remember, you can’t tell yourself off for not doing something.

Despite feeling good about today I know that last night I had the same thing going on, as when Adam came home I know there was something I wanted to talk to him about, but I couldn’t remember and like this morning I didn’t care, it was just this strange little voice in the back of my mind, edging me on all the time saying “you have to talk to him about…..”. I still don’t have the slightest idea what it was about, and I am still not worried in the slightest by it. If only I could select the things I forget, life could be very different in deed.

I have what might sound a little odd but I have sort of fantasied view of my future life, I know that everything that is wrong with me now is only going to get worse, but in my fantasy I will have a future with a mix of yesterday topic and today’s. I see a life where I sleep a lot, but when awake forgetting all about wasting my life in bed and totally not worried about getting absolutely nothing done, combined with this nice happy feeling. It feels strange looking forward to a life of totally not caring and sleep, but out of all the possibilities it sounds really good. I of course also have a worst case scenario as well of being locked inside a body raked with pain and no way of telling anyone, if there was a choice system it would be easy.

Recently I have been in this position of feeling good from somewhere deep inside more frequently, and it is a welcome break from just pain, it’s not as thought the pain has gone but it just somehow doesn’t matter as much. Like most things thought I question it’s source, nothing happens for no reason and there has to be one. The only one that makes sense is that my endorphin levels has been raised, for that to happen my body has to be reacting towards something, but what? I can’t help questioning everything these days, with so many problems going on physically I constantly questions myself, what is that pain, what origin of my body is there, why have I suddenly gone numb and so it goes on. Getting an answer to any of them would be nice, to all of them amazing! I know the NHS moves really slowly, but it is getting to me a little as it is now about 8 months from my first asking for help, to still not having an answer or a solution. Unfortunately to date I haven’t managed to forget about any of that, but that’s life, things rarely go as you want them to.

An alien invasion

I woke this morning instantly aware of the strangest thing, my index finger on my right hand was dead, no wrong word, it was numb like it was asleep apart from a small point at the very tip which felt as though there was a needle stuck in it or I had burnt it. The movement was normal and so was the rest of my hand, just this one strange finger which took nearly an hour to return, other than the tip. Although it has decreased in it pain, it still has this point which is sore, press on it and the pain feels like it is right on the tip of the bone. It is strange things like this that can actually make me laugh at my own body constantly, it seems to take pleasure in finding new and unusual things to do.

Living with something like MS can often feel as though there is some kind of alien has taken up residence inside you, being alien they have to explore all the nerve paths and muscles to see what they can do to amuse themselves at that moment. You never know what is going to happen in the next minute far less be able to plan for tomorrow or next month. I have been living that long with my alien that I find it hard to think back to what it is like being healthy and to just have a body that does what it was designed to. I often wonder when I am writing if these are things to do with MS or if the happen to healthy people as well. I have a guide line now, I will use my finger as an example, I have never had anything like that in any part of my body before, in the case of a finger I measure it just against all digits, so the odds are that this is my resident alien, not the normal actions of a healthy hand. That I know isn’t 100%, but it is closer than flipping a coin. If it is something that has me totally baffled, I still often ask Adam if he has had anything like it, he is my as near to a normal point I have, if he hasn’t then I know it is MS. It didn’t surprise me that things are a bit wacky today though as my body is still fighting every action I take, silly things like if I cross my legs I am getting really sharp pains shooting down the front of my leg and sparking small spasms in my calf muscle, I am still a shattered mess and it will not let me forget it.

I suppose to those of you reading this who don’t have a similar illness it is a bit hard to imagine that your body can simply do something that you have no control of, strange movement as nerves spark and muscles spasm. That from no where and for no reason, pain will suddenly start and stay until it is ready to go. That without injury you have lost sensations in in your fingers other than the mad pins and needles, that pulse more than tingle, although they often do that as well. That you can reach out to lift your cup or glass and you simply can’t do it, as there is no strength in your arm to achieve such a simple motion. That on standing you can only achieve a bizarre wobble rather than a smooth stride and all of these things just happen, no choice, no control because at that second that alien has it.

Last night was another evening of sitting, lying, shifting about, forwards and back again, legs on and off the table and anything I could think of to stop the pain in my legs even for a few seconds. Interrupted with having to move my left arm around while massaging the muscles as they were either in spasm or dead to all feeling. No it wasn’t fun and again I had to trust on my Gin bottle to control it enough to sleep. I am waiting for the day that standard blood test show up that I have damaged my liver with all the Gin I now drink, but to be honest I don’t care at that time as I know it works and I have to do something. Sometimes I feel like shouting and screaming that it is my body and if I want to do something I will, but screaming would only upset the neighbors, just like throwing the glass across the room with my right hand, as my left can’t do it. Frustration is one of those other symptoms no one tells you about, the ridicules anguish that appears when everything else has been taken over and away, running in a visions circle, as the more frustrated you get the less your body will obey you. Unless a there is a sudden unexpected change, today, well it is going to be somewhat like yesterday, but I will be here tomorrow, still finding time to laugh at my alien.

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.

STEP 1

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,

STEP 2

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.

STEP 3

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.

STEP 4

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.

STEP 5

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.

STEP 6

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.

STEP 7

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.

Phones, Super Glue and feelings

It has been a kind of strange week, there has been a feeling that something is going to happen and I have no idea what it could possibly be. It is not as though nothing has happened this week it has and out of the ordinary things as well. Monday started with my house phone deciding to commit suicide, we had a set of three phones so that I had one in the living room, bedroom and kitchen, just in case something happened and I couldn’t get to the living room and as running to answer one is no longer possible. The bedroom phone died completely a few weeks ago and I hadn’t managed to remember to find a replacement, so when the living room one started playing up then died on Monday morning, I jumped onto Ebay and bought a new set. I really should have done it sooner but with our finance’s on hold I didn’t really want to spend the money, as it turned out I found a set for under £40 including delivery and they are brilliant. They arrived on Wednesday and lived up to the description, I had chosen a set with nice large buttons, the ones on the last set drove me nuts, just as mobile phones do. If you don’t have good dexterity, you need a button that allows your aim to be off slightly, well quite a lot really, touch buttons make life harder not easier, they need to have a good click action, ensuring you push the right one and not it’s neighbor as well. As an extra good point they all work hands free as holding a phone to my ear causes pain and spasms in my arms, problem solved. I get exasperated with designers who seem to go for looks only, not functionality. Phone fixed 🙂

Tuesday morning I was about to go from my shower and remembered that the clean nightdress I had in my hand needed fixing as the little hoop which holds the strap on was broken. To anyone out there with MS, please throw out any Super Glue you have. This isn’t the first time but it is the worst, I now have glue all over the kitchen floor tiles and the clean nightdress. Clearly I didn’t have my brain engaged but I couldn’t get the dispenser to open as it was glued tightly shut, so I opened the second screwed on section, the one you should NEVER EVER remove, that was the big mistake. I had been on Ebay many many times in the past couple of months looking for some new nightdresses, the ones I have are getting tatty and beyond a condition I would want anyone to see, but I could find nothing that fitted my requirements. All I wanted was a plain black full length nightdress, simple, no! I don’t want it to be see through or split up to my hip, I want it to cover me and be comfortable. I have only worn nightdresses and dressing gowns since I could no longer leave the house, they are easy to put on and take off without assistance. I am still waiting for them to arrive but what I thought should only cost about £30 for 4 landed my up having to spend just over £100 as I also bought another dressing gown. More cost, one nightdress ruined and two floor tiles damaged, but still that feeling something is going to happen didn’t clear.

When the phones arrived on Wednesday I sorted them out as far as I could before Adam came home. I exhausted my self doing so but as I was the one who installed the old set I knew where all the wires went and knew it would take me seconds to do in comparison to Adams time taking things apart that didn’t need to be touched. But I had to move piles of stuff from under my desk and then return it, there is a plan to clear the whole thing out one day but it is just a plan for now. The evening was spent felling like a zombie but I still felt something was going to happen.

Yesterday nothing happened all day and I was so please it didn’t, the zombie state remained all day and all evening. The day just happened rather than had any order or substance.

I’m still waiting, it’s Friday and the zombie state are still in residence vising with the something is going to happen brigade. How come in a week that so many different things that normally wouldn’t happen, happened, I am still feeling like this? Who knows….