Time to face it

I spent some of yesterday making decisions, not major ones really but ones that have actually made me feel that bit better in myself. I set to on the list of bookmarks that have been haunting me for months, I decided that if I haven’t found the time and energy to read them all when I was actually healthier, the chance of my ever managing to read them now or in the future was actually zero, so they have all gone! It is really amazing how simply highlighting a stream of links in a folder and clicking delete, can actually feel like getting rid of excess weight. I then went on to other folders of stuff that I have no reason to have other than vague memories that there was something in them I found interesting at the time, but I have no memory of now, so I got rid of them too. I uninstalled loads of games and other programs that have no reason to be there as they are to me obsolete, which actually included some of the things I was working on at the point I was made redundant. Just clearing out all those useless things has made me really feel as though I have given myself room to breath and get on with that is actually of importance to me, not what I think I should be doing.

I guess we all do collect up things that are not our own choice, but that of others and simply because someone has said “you should read this” or “I think you will like this”, we somehow feel beholden to them to do as they ask, even if you don’t really want to. I know I have always felt that way right through my life as if someone has taken the time to think of you, I feel I should at least follow their suggestion. When your life changes as mine has, somehow the fact you are not working actually makes that feeling even stronger, what else are you doing after all. At times my heart has actually sunk when someone comes up with what they see as a perfectly good suggestion, but I know will mean a lot of work, when in fact I have actually reached a point were I want to do less and less. I started realising all that weeks ago but when your entire life has worked that way and you have never actually let any one down, as long as it was in your power, to find yourself actually wishing to be left to do just what you want to rather than what everyone tells you to, well it’s hard. For months I have been wading through emails that I so don’t want to be bothered with, in accounts that there was a simple answer to, to close the account. I had 11, most connected to finding a job, no point keeping them open, so they to have gone and I have a manageable 4 that I actually need. Yesterday I started to streamline, to accept what I already knew in the back of my mind and now need to accept through all of it. I don’t have the energy or the life left in me to keep, juggling balls that I would prefer to have dropped long ago.

It is often the hardest things you ever have to do in life, accepting that you aren’t able to do what you used to do. I at first doubted very much that it is any easier for these facts to settle on you just because you have grown older, but somehow I have the feeling it is different, as that is something that happens to us all, it is a known quantity that we go through with those of our friends and family who share our age. To find yourself at that point in life 20 plus yrs before you ever expected to and alone, because your body has become an alien, well that’s hard. From when I started writing I have slowly been going downwards on the physical line that had taken me to being housebound but still with an active mind and able to do some small jobs around the house, to well being stuck here behind a computer. In the last few months it has felt as though daily my energy levels, both physical and mental have changed. It has been really hard to admit it to myself and although I know I have hinted, played around it in words and given clues and partial statements to these facts, but to actually say I know longer have the mental energy to keep up with such a simple life, well that is like admitting you no longer have a brain.

Almost every word I have written about being tired has been a hint, I know that now, but I was still hinting to myself. I’m not capable of keeping up with the outside world and when I say outside, I think I actually mean outside of me. There are even times when although I am trying to have a conversation with Adam I have suddenly found myself cut off from it, unable to continue, not just due to memory, but due to mental exhaustion. My brain just doesn’t want to work, it is capable of nothing but coasting. It doesn’t just happen when talking it happens here as well, those lost in space moments when I am starring over the top of the screen, no idea what I was writing and sometimes with no idea how I can even finish my post, there is a desire to just type a line of goodbye and stop, not forever but for that day, as I know I am rambling around the same thing over and over again. May be we should set up a coded line for just those times, so everyone knows I am OK it’s just there is no energy left to complete it with any sort of style.

I also yesterday made sure that I have 3 hours of sleep in the afternoon, I’m actually not to sure if it really worked or not. In one way yes, I can say that I again woke this morning with a much brighter and more awake feelings, so the combined hours did seem to improve things, but yesterday evening was once again as it always is, either on the 2 or 3 hr slot. I again felt to tired to do anything and struggled to get to 8:30 before bed. It’s hard to work out just what this means, I can’t imagine sleeping 15hrs straight, that just sounds nuts and actually impossible. Oh and this paragraph, is actually really about sleep and nothing else.

5 thoughts on “Time to face it

  1. If you were an MD-er, like me, I would question your blood/oxygen levels. Often for people ith advanced MD it is the muscle strength associated with lungs and breathing that tire and so you don’t breath enough, there are several who use a non-invasive-vent system, often at night to improve their levels and give the an energy boost for the day. There are also breathing exercises.

    But like I say, that is MD, I am not surewith MS. I hate being tired, I am an intermittent sleeper [Mum & Sister too] so it is a family trait, but I also have the trouble of my MD. A friend was shocked when I said I never wake refreshed, and always as tired or more so than before I went to bed.


  2. I have COPD as well as MS, I was at the hospital last month and I was told that my lungs only work at around 60% of normal, half of that is due to my MS, it is reducing the muscular strength and is behind all the pain in my diaphragm and much of my ribcage is due to my MS, the rest of the damage is due to my cigarettes. They have me on medication now including an inhaler, I have to go back in October to see how I am getting on. I did tell them when I was there that I sleep stupid amounts of time, but they didn’t give me the impressions that it was anything other than my MS doing that. I don’t know how the system works but I am guessing it is similar to when I was dx with MS, try something come back try something else. It is always a wait and see system here.


  3. Streamlining is just the thing and an idea for all of us, there is nothing like a good spring/summer clean or declutter, it removes the pressure we all feel to be doing other things rather than simply looking after ourselves. I regularly give away books; delete bookmarks, recorded films and programmes if they sit untouched for a few months and if I keep finding myself thinking ‘I must get around to reading/watching that soon’ more than 3 times and don’t do it. I’ve become quite ruthless but it is refreshing. You’ve had an unbelievably stressful few months both physically and emotionally I have no idea how you keep going as much as you do. There is absolutely nothing wrong with taking time out each day to allow yourself to recover, take a ‘holiday’ write only what you want or just for pleasure. Nobody here would begrudge you in the slightest you are always there for us; sleeping longer for a few days or all day, to allow yourself time to recover is not giving into anything, what you’ve been through would exhaust anybody. You say yourself you feel some benefits there is no harm in trying maybe your body is trying to tell you that?, you absolutely deserve some time out after all you’ve experienced and the code word/coded line is an excellent idea if we see it when we log on we know you are ok and what the story is. Go for it! take care of yourself, wishing you a restful sleep, (there is a school of thought that reckons the body works best when you sleep 4hrs at a time (I rarely can sleep for longer than 4hrs so have accepted daytime sleeping albeit begrudgingly)) Sending positive vibes your way x


  4. it is amazing how many people we try to please we seem to get swallowed up by offers and acceptance to do things we dont really want or care to do but we still think I will just put that in my to do pile yet more and more stuff gets popped in these I also found it incredibly relieving to clear these drop in folders from my In box and just write them off. Not just that but as you said when you are wondering around the world wide web you see so many links, so many things that somewhere in the distant back of your mind it spikes an interest and you save it to your favourites for return at a later date sometimes admitting that that date will never really arrive and cutting those links free will release you from the swamping stress that drowning in these files and links can cause I am glad you have had a good clear out 🙂


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