I have a new computer and I'm back!!

I'm not sure if since I got ill time has moved really slowly or if it's sped past. I've been thinking about it for a few days now, and I really don't know. I think it's kind of akin to being pregnant. It feels like it's dragging on forever whilst it's happening, then, when it's all over and you have that little baby you wonder where the hell the time went?

Since I was diagnosed it's been both. There are times (mainly when I was bed bound) when every single day felt like a year. Being in pain, it seemed unending and time ticked past so slowly it was unreal. When I've had other illnesses and infections on top of the norm time somehow managed to move even slower. When I was pregnant, it felt like the longest 10 months of my life.

But other points since I got ill when it has felt like time is on speed! I feel like parts of my life have just shot past, bits that maybe I was supposed to live to the fullest have just carried on whilst I was out of it. This has occurred mainly when I sit and look back, realising how long I've been ill for and wondering where on earth the time went. Also, when I was at my worst and bed bound, weeks appeared to vanish in a flash, I would be asleep or partially sedated so often that I wasn't even vaguely aware of how much time had past. Occasionally I would feel it was hours, maybe even just minutes, when in fact it was days or even weeks!

Sorry about the long gap, my computer broke and only had my phone as a connection to the internet and typing on it for longer than a text message really wares me out. So, now I have a new (and shiny, and light) computer AND a new ipad (beams with pride) I am once again all "technologied" up. I've been saving for an ipad since the first one came out as I thought it would be easier than a laptop in bed, and lighter. I chose to go with the new one because it has voice dictation, I also have been sorting out dictating software for my phone and eventually my lap top, so I can write not matter whether or not my joints are disagreeing. Yay! Anyway...

This disease has a funny way of messing with time, or at least perception of it. Chris says that time moves quickly when I'm iller, for him that is. I would assume it's because between working, caring for Niamh and looking after me he simply does not have a moment to stop and think about it. I'm sure other family members and indeed friends feel like time has moved more slowly since I've been ill. I often have the "it feels like you've been ill forever" and "aren't you better yet" conversations, simple response "it does" and "no".

 I often wonder what Niamh will think when she's older? At the moment she doesn't know any different, having a mum who is ill is normal to her. Will she ever know any different? And if she does get the opportunity to experience having a healthy mum, would it be fair on her if I relapsed again and it all went down hill? There are so many questions to which I don't think i'll ever have the answers, especially not the right ones!

Here are mine and Niamh's 366 photos for today:

And Niamh, in the park, with a ball and a stick.

I feel I must mention the sad news this week of the death of Emily Collingridge. She was a very severely affected M.E sufferer and died at the age of 30 from the illness. She was a very caring, very loving individual who helped many dispute her situation. She wrote and published a book on living with severe M.E which was a lifeline to both me and my family at times during my illness. I would like to dedicate this blog to her. A longer, more detailed dedication can be found here.

RIP Emily Collingridge 1981-2012 fly high hummingbird, sleep well with the angels, no more pain.

What would you do?

Someone linked me to a video the other day and this is it.

It made me cry when I watched it. It's American, so lets not get into this whole name debate about whether it should be referred to as M.E or CFS, it's the same disease at the end of the day and the meaning of the video is exactly the same.

Basically, an American charity called "Solve CFS" asked a number of sufferers what they would do if tomorrow they woke up completely cured. I sat for a long time after watching the video and decided I couldn't narrow a list down very far. There is simply so much. So here are a few things.

If I woke up tomorrow and I was completely healed, I would:

• Run around with Niamh in the park. 
• Throw away my wheelchair, crutches, walking stick and other equipment.
• Clean my house and move things around so that it is exactly how I want it. 
• Organise everything, because I would be able to remember what I'm doing! 
• Go out late with my friends and dance the night away. 
• Eat and drink what I like. 
• Plan activities to do all day, everyday, with Niamh. 
• Go back to midwifery. 
• Bake cakes everyday. 
• Go for a walk in the rain.
• Swim in the sea. 
• Play in the snow. 
• Fill in my own forms.
• Talk to people on the phone. 
• Sort out my own affairs!
• Plan my future.
• Live for everyday. 

I don't see it ever happening but it's worth hoping for, I suppose! One of my friends did ask me once, if there as suddenly a cure for M.E would I take it? My answer was, of course I would. He then made the very valid point that it would change my entire world in an instant. It did make me wonder how I would cope. Of course it would be for the better, but literally every aspect of my life would change and I suppose that would take some getting used to.

There is just so much that I want to do with my life, but I am so restricted by this disease. I spend so much time looking at the positives of my life, and they are so important to me and all I need. But, some days I do spend time thinking about how my life should have gone, well how it might have gone if I didn't have this illness. The aspects of life that I miss out on, that I want and can't have. Things that I felt I should have been able to accomplish, things that I miss. But when you look at it, if I didn't have M.E then I may not have had Chris and Niamh and no amount of suffering can make me want to change them!

So, I want to ask those of you who also have this disease, or other illnesses and/or disabilities that prevent you from living your life in the way in which you would like, what would you do if you woke up tomorrow and were completely cured? And those of you who don't, who still have the potential to live your life in the way you would like, to do what you want, what would you do today, if you knew that tomorrow you would wake up with M.E?

Here are mine and Niamh's 366 pics for today. Sling snuggles.

And Niamh, climbing again, and giving me a heart attack!

This is a picture of me, made with words, I think it looks like M.E feels, if that makes sense!

Night folks!

Niamh's ill again.

Sorry I haven't been able to write in a while but Niamh, the poor pickle, is ill again. Since the 13th of Feb she has had a sickness and diahorrea bug, an ears, nose and throat viral thing (which she gave to me) and most recently (and ongoing at the moment) an ear infection (in both ears) and a chest infection. Poor little one. She's been having high temperatures that have seen her practically naked most of the time and being dunked into cool baths at random intervals throughout the day. Which she does not enjoy. It seems like as soon as she gets over one thing she picks up something else.

Of course it's hard on me and Chris as well. Chris because he still has to do the nights with her, even though she has been incredibly unsettled and up most of the night and then he has had to go to work. Each day this goes on he is getting more and more tired. Although having said that she had a bit of a better night last night, and Chris being normal, seems to have picked up a bit, I suppose his body doesn't take weeks to recover from a few bad days. I have been awake most of the time she has overnight, because the flat is so small you can't not hear her if she is awake. Also having her be ill and spiking temperatures here, there and everywhere has meant that I have had to be a lot more active during the day than my body can truly take. I have also been worried and on edge all the time. This, as most people reading this will understand, is a bad idea for a M.E sufferer as worry and stress make all the symptoms worse. So basically, as Niamh improves I am worsening. I just have to get to Sunday when Chris is off and I can rest all day. He's asking work about unpaid holiday to give me a bit more time to rest and recover so I can avoid all risk of a relapse.

I've been having real issues with my neck, it's beginning to have massive trouble holding up my huge, heavy head (it's all the brains)! Also I have been throwing things at a remarkable rate, this usually happens occasionally but at the moment is a much more common occurrence. Mainly drinks in fact, and after wasting an obscene about of diet coke I seem to have worked out it is the tipping motion of trying to drink, so at the moment I am having to drink everything threw a straw, including tea and wine. I am pure class! Anything hot must also have a lid, lucky for me Wilko's do this rather funky keep calm and carry on mug (pre-straw):

It's quite a lifesaver in fact, and I really like keep calm and carry on stuff, so I don't think I feel as annoyed about having to have lids and straws when I get to have a funky cup! O and, seriously, wine through a straw, classy, and I think I still managed to spill it!

Dad has been round loads, taking Niamh for short walks when she perks up a bit in the afternoon, which has given me a chance to have a bit of a rest. Mum has helped out and even my sister has come and brought me stuff round (which is a massive thing for her at the moment as she has just got the keys for her new house and has been trying to clean and sort it ready for furniture in her 4 rest days). It's a nice house, I think she will be very happy there, I am very excited for her and very, VERY jealous!

Anyway, I will attempt to get back to posting regularly as soon as Niamh has improved and when I have enough energy (freakishly like today).

Here are mine and Niamh's 366 pictures for today:

And Niamh, having snuggles with Auntie Angela :)

Night folks!