Monday, 5 August 2013

All by myself...

Apologies but I am feeling the need to vent. Call it boredom, call it cabin fever, call it frustration or all three plus more but I am actually feeling a bit lonely. No offense to my family. Lonliness is strange, it doesn't always mean being on your own- heck you can be in a room full of people that you know and still feel completely alone. Because your head/ brain is addled with thoughts that you are different, that no one will understand or can relate to what you're going through. Sometimes that's just distorted thoughts but it's sad all the same.

Since being lain up in bed (post to come soon) I have been coping not too badly. Better than I thought I would anyhow but then again I haven't had much choice. But actually I am starting to miss the outside world. My friend is putting up lots of statuses and photos from the holiday that I should be on and it's driving me a little mad. Oh I know full well that I wouldn't have coped and there is no way that I could have gone and I'm very comfortable with the decision not to go. But that still doesn't stop those feelings of missing out. Maybe it just doesn't help that things have been at there worst this week and I haven't been able to get out what so ever. There has been very little distraction from being ill. No 5 minutes out that you can somehow pretend you're not ill for a little while. My curtains have hardly been open either so I literally have very little clue what has been happening in the outside world.

There is only so much solace that you can get from facebook, television and reading, apologies Scarlett. Trust me I have been reading a lot! Reading Gone with the Wind as well as being a book that I have been wanting to read has been a way to try and slow down. Sometimes it's nice to be somewhere else. At the end of the day we are all social animals and while family have been over I still long to be out. But I know full well that that is a little beyond me at the minute. My priority is to get to my hospital appointment on Wednesday because that is all important. So I am trying to save some spoons, or put in an order for some to be made. But again it's all about this illness. Ahh is there no escape! Oh how I wish I was in Greece right now. Something about that place just makes me flourish and so happy. Sometimes you can't shut me up. Every time we leave there is usually a crowd to wave us off. Mind you thinking about it that could be to make sure we leave haha. But I guess that's holidays for you. I do miss my Greek friends though.

The other day I found a diary from a year ago, one diary was in the form of the diaries I mentioned in the post 'Thing's I learnt at clinic diaries' but more of a list than a chart and I also found another that was more of a feelings diary. My list diary has subsequently took on a new life as my medications log- to help with the poor memor and to hand to the rheumatologist on Wednesday. Anyhow I was reading through them and was actually quite shocked at home much that I was actually doing. I was even getting out of the house on subsequent days, something I can't remember doing for a good while. Usually if I get out then the next day or days after are 'recovery days.' But there I was a year ago getting out a fair bit. Wow it feels like another age. It was a friend of mine'ss 40th birthday and I was in charge of organizing it, given my organizing skills and because I felt I needed something to do to keep my mind occupied and of course because I felt she deserved a really great party.  Of course you can do so much online nowadays but I was out and about getting things and making things too. Of course I could never go alone and I most certainly fell asleep many a time on these trips but looking at where I am now and seeing it down on paper what things were like a year ago really gave me quite a shock. It was mostly written in blue ink aswell, signifying that I felt okay. This was probably down to me having some skills in managing my ME from going to the clinic and knowin more about wwhat my body could handle, which I'll talk about in future posts. I did wonder though whether this could have led me to feeling the way I am now but that is no way of thinking. Because in no way back then was I not suffering. There were plenty of 20 hour sleeps. Like I said from the blue ink it seems thngs were quite controlled though so that is good and as I have said many a time all we can do is live in the moment. You can't think 'oh I best not do this now, because a year or more from now I will regret it.' That's just not living and our lives our limited enough. That party took it out of me though, you bet. Even with bein sat down for most of it.

I have been going on twitter a lot recently and have been talking to other ME sufferers, which has been nice. It's strange because you feel like you know them as they have very similar experiences to your own and like you are searching for some validation that they are not the only ones out there going through this. There is a great community of people on there. It's easy to take them in to your heart because unfortunately you have a good understanding of one another. Of course it goes against everything your parents ever told you about talking to strangers but it's nice to find a support network. Especially when you're bed or house bound, the internet can be a bit of a saving grace. Unless you are on ebay or amazon marketplace at 4am oops! There are people out there that understand and it's always good to talk. I am actually feeling a bit better after venting. Apologies for moaning. Oh dear I have I just whacked my self trying to get a fly and now my whole arm thinks it's been assulted. Finding it hard to type now. Oh dear, what madness!

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