Dip

I crashed again last night. That about says how I feel this morning, short and to the point. I felt it closing in as the evening went on and by 10 o’clock I was almost crawling to my bed. Sunday night TV is to me at it’s best at this time of year, I can more than happily watch the BBC from the evening news right on, which is exactly what I did. I had felt as the day went on that I was chasing my own tail, frequently that is a sign of things slipping. Everything went well until around 1pm and then slowly I lost it, I was behind by the time I went to bed for my nap and I woke up feeling tireder then I was when I went there, always a bad sign. No matter how fast I tried to move answering and sorting out the tweets I received I just seemed to have more and more of them piling in behind them, my system was falling to bits. I pushed myself as I wanted to shut my PC down before Strictly started, I was about 5 minutes out but I really had had to push hard and that removed the final energy I had.

Although I was really enjoying the TV I just couldn’t get comfortable on the Settee, I kept changing the cushions around and my position on them but all I felt was pain in my legs. By sitting hunched over my knees and leaning hard down I could release the pain in my legs but the problem then was the pressure sensation to crosses over my upper abdomen from my gallbladder on the right straight over to my left side. One of life’s no win situations. As always I was tiring myself out more and more just trying to stay in a constant, by the end of Andrew Marr I was wiped out and bed was my only thought, my slow progress getting there was the final clue.

Waking this morning the pain in my legs had calmed until I stood up and the shock waves ran from my feet right through me, just getting to the living room to boot up my PC while I fetched my coffee wasn’t much faster than I had been at bed time, I could see clearly what my day ahead would hold. It is now 4 hours since I got up and well I was right, pain levels are high again, after yesterday morning I was so hopeful that things were on an up, now I am not so sure, having said that my mood is still quite good considering everything else, so it is not all bad. I think having a couple of lighter days has made a difference and I am still very much on the up side, just a little disappointed with my legs. MS is nuts that way, you push yourself to do something like some typing and you pay with sore legs, why?

I am finding the pressure in my abdomen is really getting uncomfortable now, it was the case that I used to have discomfort in short spells and I could release it at times by changing my posture. Yesterday something new added itself in, I was also getting pressure in an area of about 6 inches below my gallbladder as well. I am calling it a pressure as I am not too sure what else to call, to myself it feels like the area is dead, as though it is slightly wooden or numb. There isn’t a feeling of pain most of the time, just occasionally, if there is going to be any pain it is usually in my left side, and there is nothing to feel at all when I press anywhere in my abdomen. Some area are painful when pressed but not to any great extent. The sensation is extremely annoying and uncomfortable but I can say no more about it than that. I may not seem of any importance at all but try living with it day after day after day and the spreading of it is making me worry a little more about the reasons. I have just two and half weeks to my next appointment not too long to wait but it is dragging now.

Reading all that back it all sounds rather down but I am honestly not, the lift in my mood that appeared yesterday is still there, it is just that my body is putting up a challenge, after all it lost yesterday in the daily battle, at the minute I think it will lose again today.

Independent thinking

Some of you may have noticed I don’t fill my posts with links to other blogs of even to medical sites, I do this on purpose and it has a simple reason behind it, I no longer read other blogs that are about MS. That may surprise some of you but I have done it on purpose, it was a conscious decision as it is all to easy to allow others individual impressions affect your own. I wanted and have tried hard to maintain this blog as my journey, (I hate that word but it is so hard to avoid) and the discoveries and problems I encounter. When I was first diagnosed I read everything and anything that I could find and on occasion found a person who I connected with and who was writing what I felt, but with all of them there were things I couldn’t agree with, just as there will be in here for many of you who follow my daily ramblings. I equally found medical sites cold and to simplified to provide a voice for my MS, everyone’s MS is different and that is a medical fact, therefore so is the voice that accompanies it, I am luck, I can give mine a voice and a place to be heard, not everyone can. When someone suggest that I read something I politely change the subject and move on but as I am human what they have said, will enter my mind and I will think about it.

I don’t know how many of you what ‘Hollyoaks’, but they are using a story line just now that is making my just a little angry. To set the picture the story is following a teenager who has been duped into having a cannabis farm in the attic of his families home. One of his friends fathers has MS badly, although I don’t think we have seen him for over a year now, he went into hospital never to return, but his son is using his father health as a cover story to protect his friends from the others in their group. The story line angers me for several reasons but the main one is due to the issue of cannabis being constantly linked to MS. Although all medical tests have returned no real evidence to support the belief that cannabis helps with the MS symptoms, I am sure it probably does, but what always annoys me is the now common assumption that because I have MS I smoke cannabis. I don’t. I tried it as a teenager, as most do, but I have never touched it since and I never want to, as it is illegal. It might work but I don’t want to find out, I wouldn’t ask my husband to get a criminal record because of me, I will take anything that my Doctors give me but that is all.

I have nothing but praise for Hollyoaks writers, who wrote an excellent story line on the impact of a parents MS on a teenage carer, but just as the blogs I read, the fathers MS wasn’t the voice of mine. TV has tried, many times and I have watched many of them but I have to try hard not to get angry a lot of the time, as they all seem to be doom and gloom stories. I am glad that it is now a story line included in many different programs and awareness is raised, but I am angered constantly by the image TV insists on portraying of a person incapable of any independence, smoking cannabis and falling over every two seconds. Hallo TV world, there are loads of us out here, not just me who are aware of our futures but still living to the fullest extent and still happy to do so, oh and don’t smoke cannabis.

I have a plan, a cunning plan…

I’m tired today, not anything to do with my MS or lack of sleep, it’s the kind of tired that seems to come from somewhere deep inside, almost from your sole. The kind of feeling that makes you want to go back to bed curl up and sleep in the hope that when you wake the world will be a different place. It is a tiredness that comes from my emotional heart as if I have pulled one bucket to many from the well and it needs time to refill. This week has had no more stress or activity than usual, nothing that has stretched me or challenged me. I feel as though I may have been running on half empty for a while and I haven’t given myself the space required to regenerate.

I sat here this morning for nearly an hour feeling blank and drained not knowing what I should be doing or doing anything at all. I noted that feeling a while ago in a previous blog and it has taken me until know to start to work out why. There is only one thing, bare with me here as this idea is forming as I write, it is so slight that it seems nuts that it can be the root, yet it seems to make sense. Until a few weeks ago, I had had a system as simple one and one I have slowly bit by bit pushed to one side. With the wonderful dark evenings I had been taking the space each day to just sit and do nothing. Each day had a simple flow to it set out by my health and the sun and I have now changed it, not on purpose but it has changed.

A few weeks ago I spent my mornings here at my PC, writing, reading emails and answering job ads. I blogged sent some tweets read others blogs and played some silly game or other. After Adam called at around 1 o’clock I switched of the PC and TV closed the curtains and went to bed for a two to three hours, my alarm set for 5 0’clock, just in case. When I got up it was always either dark or minutes from it so opening the curtains had no point, I would light a few candles, put the TV on and prepare dinner, sit down in front of the TV and waited for Adam to come home. Our evenings were spent together and had a gentle flow, of eating dinner together, heading through the remaining hours of the day until either the need to sleep took over or I simply had taken all of that day, my body could deal with.

Compare that to now. I spend my mornings here at my PC, writing, reading emails and answering job ads. I blog, send tweets and sort out photos for the next days blog, read others blogs and tweet some more. After Adam phones I go to bed for no more than two hrs, my alarm set to make sure I sleep no more than that. I get up put on the TV, my PC and sort out dinner. I tweet, reply to emails, read others blogs, play silly games, pausing just long enough to eat dinner, sometimes here at my PC, when it eventually starts to go dark I close the curtains, light the candles and sit down. There are only a couple of hours left now before bed, tired out and desperate for sleep. There is clearly the root of the problem, I am pushing in far more activity into each day, why, simple it’s light I don’t feel that as long as there is light in the sky that I should be sitting doing nothing.

I know that sitting at the PC to many of you will seem like doing nothing but it isn’t, the whole time I am sat here I am active doing things, trying to watch TV, write, play, speak and all at the same time. I am pushing in an extra quarter to a third activity and cutting my relaxation by the same. Clearly I am going to have to put this right, but it is going to be hard as this is something I have always done and was one of the reasons unlike everyone else I never liked summer. Daylight to me means activity, as long as there is light I have to work, clean be active, winter is the time to do nothing and summer the time to do everything. If the long evenings are destroying me already and I don’t take this in hand now, what am I going to be like by July. I can see already that this is easier than said as it is very much a deeply ingrained behavior, if I don’t though, I am heading at high speed straight for one almighty crash.

I remember last summer frequently having to go to bed as early as 7:30, I had seen my ability to stay awake later throughout the winter months as a small improvement. I am guessing now that it wasn’t an improvement at all it was simply I changed my way of doing things and stopped pushing myself to the limit. It isn’t going to be easy but for this coming week I am going to be strict with myself and act like it is winter and see how things go. I suppose it is the only way I can find out if I am right or not. I can’t trick my MS but maybe I can out smart it 🙂