I seem to be in one of those moods where I seem to be searching for things that just waste time and achieve nothing. I’m not lacking concentration, well no more than usual, but I am finding everything and anything that distracts me in any way what so ever. I have lost count of the pointless searches I have done, the number of photos I have flicked through or the time I have spent reading about items of no use what so ever. I know we all have spells like this and I know all to well that I have had them my whole adult life, especially hard to deal with when I was supposed to be working, but somehow it just seems more important to waste time than use it. I guess it does us all good to kick back and just coast occasionally, I know some people will think that is all someone who is chronically ill ever does, but that is so wrong that I can’t find at this second a world strong enough to express it. Even taking away everything I do online, I am still putting in a full day, just differently from how the rest of the world might express a days activity.

When I fist started writing, I found the photo that sits on the first page of this blog as at the time I thought it was the perfect image to sum it up quickly, it still is to a great extent, but I know that it just brushes the surface of understanding a life like mine. I do as the picture shows spend a lot of time sleeping everyday, ever 24hrs finds me sleeping at the very least 12 of those hours, but it is what I do when I am awake that truly breaks me away from the life I have lived in the past. It is the everyday things the small details of life that changes everything, something as simple as the fact that last night I took a laxative, this means already this morning I have had to walk to the bathroom and back 3 times. No big deal there is there, well yes there is. The result is I have used up a large chunk of the precious energy that I have to last the whole day, both of my legs, especially my thigh muscles are screaming at me as they simply can’t take that amount of exercise in such a short spell of time. It might sound strange, but it has also put a huge strain on both my arms, I no longer have the strength in my legs alone to push myself into a standing position, to stand-up these days, I have to push on the desktop with my arms as well. Add in the sitting down and standing up again whilst in the bathroom and something simple for almost all humans becomes a journey as exhausting and fatiguing to precise muscle groups, as it would if you had been out running for about an hour.

So here I am 11:15, I have been awake for not quite 4 hours and already I am winding down, my energy clock is touching half way and screaming at me to stop, to do nothing to rest a while, I would if I could but I know I will be on my feet again in the not to distant future. That aside well there are all those other little things to be done, like typing, lifting the remote control to change the TV channel, smoking and sipping my coke all use my arms, all add up on the scale of energy and pain. Again things that mean nothing when you are fit and healthy, but everything, even breathing has a wearing down effect on the muscles involved, the lower the energy bank the more the effect. To an observer, I have done nothing today, I ate my breakfast and I have been to the toilet, nothing at all. To me, I have just climbed a mountain and taken a 5-mile hike. As I said my day is as draining as anyone else’s, probably more so, I just don’t have the same possible energy there to use and each of those actions adds in pain, which eats away at it even faster.

There are strange things that I even never thought would have any effect on me, it may sound silly but on days like today, well even my holding my head up, seems to pull at me, to drain the energy. Even to me it sounds nuts that doing totally nothing like sitting watching TV will wear me down and make me need, not want to sleep. Often those 2 hours in the evening when Adam and I sit together talking and watching TV are the 2 hours that take the most out of me. It appears that even using your brain is a drain on life energy, slowly I wind down until I can’t take even holding my eyes open any longer, I just have to close down and sleep. I may not go back and forward to work, or clean my house, or even cook a meal, but my days now drain me in ways far beyond all of those things. I may have been a mother, with two children just 15 months apart, but I couldn’t manage to put up with even one child’s noise and constant activity around me for an hour now, far less a whole day. I can think of nothing, other than sleep, that doesn’t take it toll on me.

When Jake came to see my last week, I was pleased to see him as it had been a few months, he was here for about an hour and all we did was sit and chat, but by the time I saw him out the door, well I have to say I was glad he was going home. One hour, that was all it took and I was drain not just of things to talk about, but of the energy to keep sitting there, trying to smile and be pleasant. When he left I went and lay down for half an hour, I could have slept for much longer but I wanted to get on with everything here, but when the time came for my nap, I slid into a sleep that didn’t want to end when the alarm went off. I find myself these days in very much two minds about the fact that friends vanish when you are ill, I am in two minds as it did hurt as they went one by one, but now, well I don’t honestly think I could deal with them coming to see me. One person every three months is probably just about the level that I can deal with now, maybe they vanish for our own good, without us understanding at that point. There has always been one exception to date and that is when my daughter comes to visit, I only see her every few months as she lives in London now, but somehow her being here seems to give me spare energy at the time, I may sleep more for several days after, but at the time, I am just that bit more alive.

There is one overriding truth about illness, you can’t just look at a person and tell whether they are ill or healthy. For the majority of conditions, those that are most serious and long term, don’t show on the outside. Spend just an hour with me and you will start to understand what it does, spend a whole day with me and you will see an apparently healthy person, turn into a wreck, with no energy, little ability to string a sentence together, racked with pain and unable to stay awake, long before that day is complete.

Please read my blog from 2 years ago today – 22/05/12 – Known Limitations 

I am once again waiting. It seems to be something that I do a lot, wait, just wait for the doorbell to ring. I am expecting a visit from the Continence Nurse today, it is now nearly three months since I called the Rehab team in to get some help with the problems I have been having with my bowels. They tried to help me at first with medication and despite trying different combinations and dosages things are still as bad as they were before I asked for help. I have had problems with my bladder for years and I have been self-catheterising on and off for 9 yrs. Whenever I have a flare it gets worse and I need the catheters, it can take a few weeks to settle…..