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!

What's worse? Mental or physical?

Throughout my time with M.E I have almost had every symptom in the book at different points. I was sitting back today and trying to work out which type is worse, the physical or the mental and, if I had a choice which one I would have.

I obviously hate all of them. Being in pain and feeling like crap sucks royally. I think that myself, as with everyone else, I have symptoms that I am better at dealing with than others. I hate being in pain, but to some extent at least I can deal with it or get angry with it, if not I have pain meds to help. The light and sound sensitivity, I can wear eye masks, sunglasses or ear plugs, which makes it all more manageable. The nausea I have tablets for and the exceptionally poor temperature control can be remedied with blankets or fans. The muscle weakness and inability to walk far, I have equipment to help, a walking stick, crutches and a wheelchair. My inability to do too much for myself sometimes, I have things to help me there too, for example a bath lift and perch etc.

In almost all aspects of this disease there is help available, be it equipment or medication, except, that is the mental side. I love reading, I really enjoy it and almost always have a book on the go. I like writing too (obviously) and it really helps the depression that I suffer from associated with this disease, it helps me to rant and rave and get it all down on paper. I like to be organised, I like to have a firm idea in my mind of what needs to be done each day and in what order. And, I like to talk, I talk, A LOT, in fact pretty much constently. The confusion, inability and brain fog that come with this illness, are my WORSE symptoms. Not because they are physically worse than any other but because I, personally feel like I have been robbed of something so important. When I'm having a bad mental time I can't focus, I can't concentrate. I can't read (at all) because by the time I have finished one sentence I have already forgotten it, or the words aren't making any sense or refusing to stay still and running all about the page! I can't write because, even if did, no one would be able to understand it (including me), the only think I can liken that to is trying to write when you are completely wasted, see how much sense that makes the next day! I can't remember what someone has just said to me and have to write everything down, I then often loose this piece of paper or note pad I wrote it down on. Any sense of organisation goes straight out of the window. People can't explain things to me, or have a conversation that makes any sense, I can't seem to remember words that I have known for years, or what I am trying to say comes out backwards or some other demented way round. I spend a lot of my time when I am like this pointing to random objects/people screaming "thingy" until someone tell me what said object is.

I'm not saying that I like being in pain, or not being able to walk far, or not being able to do everything a normal person can do, but I can cope with it better than went I am having cognitive problems. I'm sure it might not be a problem for someone that does not enjoy reading/writing/talking quite as much as I do (and I talk... A LOT!).

I would be interested to see what other sufferers think is worse? Leave me a message on here or on facebook/twitter and let me know how you feel? What symptoms do you find the hardest to deal with?

That's it for now folks, here are mine and Niamh's 366 photo's from today:

And Niamh, who wasn't climbing again.... honest mum!

Night Folks!

Does it ever make you feel old?

As dad has been round for the past few days looking after both me and Niamh after Chris had to go back to work we have spent a lot of time watching Niamh since she felt a bit better and has been back to her normal self. The other day she was getting up off the floor and did it the same way as me, dad pointedly said, "that's how I get up". Great, I thought, me too. He then went on about how it was because he was "getting old" which of course made me think, "joy, I'm getting old about 40ish years before my time" (when you factor in the age difference and how long I've had M.E and fibro).

Since I've been ill with these I've often thought of myself as old before my time. When I was 21 and began using a walking stick, then crutches, then a wheelchair and even hired motor scooters on multiple occasions, it was kind of like being 21 going on 90 something. When I started loosing my memory, forgetting words and who people were I felt like I had dementia. When my light sensitivity started I felt like an elderly person at the old peoples home I used to work at, shut up in a stuffy room day in and day out. When my hearing started going a bit weird and my mind began taking far too long to work out what people said that I missed the next parts of the conversation (kind of like when you are in school learning French and someone says something, you have to translate it in your head before you understand it) and I was having to constantly say "pardon" I felt even older.

I'm 27 and in my head I don't feel old, in fact in my own head I feel like I haven't aged since I was a teenager, all be it I am more responsible but I still think of myself as otherwise the same way. It is only my body that makes me think I am old before my time. The joint and muscle pain, the inability to walk far, the way I have to move, the way I cannot get up or down off anything without help or a series of well rehearsed moves (or occasionally a sling shot) doesn't help. The aids I have around the house, a bath lift, a kettle tipper, a bed guard, my sofa raised and a perch (to name but a few) in my head as a child/teenager, these were things that old people had. O and medication, that's another thing. Dad was saying how he felt went he was told he would need to be on medication for the rest of his life due to high blood pressure, something that never occurred to me. I can't really remember what it is like not to be as have had asthma since age 6 so have always had to do something everyday, but I am now on handfuls of tablets and injections. I have needles, syringes, a sharps bin and a collection of tablets so big they have to be stored in a filing cabinet (seriously). Once again, in my child brain, this amount of medication was something re-severed for old age (it never occurred to me as a child, that sick and disabled people need this amount too).  Does this illness make anyone else feel as old as it makes me?

Anyway, on a lighter note, here are mine and Niamh's 366 photos for today, me:

And Niamh, after putting a silly bow on her head (I of course had to adjust it a little bit)

Night folks!

Getting better.

Sorry about the lack of blog posts but it's been a hard week. Niamh is still ill but slowly getting better, she is finally eating again although it is more or less just rice and dry toast for now at least. It's been hard seeing her like this and having to rely a lot on my family to help me out when Chris has been at work. She is so good normally and so happy to entertain herself recently she has been so upset so often. She has been crying and basically screaming and I have been unable to calm her quite often. I suppose this is the first time that she has been ill and realised that she is unwell and wants me to make it stop. But I cannot and that hurts me. If she wanted cuddles all the time that would be fine, I could do that, but nothing was calming her. Nothing at all.

This made me worry and obviously stressed me out and as most people who will read this know, stress or anxiety with M.E is a bad plan! It has made me exhausted clearly, and increased my pain levels meaning I have to be more drugged up than I'd like all the time. Dad has had to be round all day everyday that Chris has been at work. Chris has had to take two days off and come home early once, which although helpful does add to my worry. I know that they cannot fire him due to absences incurred through looking after me, as with the disabilities I am classed as a dependant and it therefore goes down as domestic leave. But I do think that it can be held against him in store, that it might hinder his chances of a promotion and maybe cause him to have a verbal or written warning, which in itself would decrease his chances of an in-store promotion. Meaning that as long as I am ill we will never get out of this rut that we are in financially.

Maybe I think too much, maybe I just need to sit back and focus on the the now and get through day by day. I have Niamh, and Chris, my own little family and I am really truly thankful. But I do worry about our future and how we will get by. But I suppose, in the current climate, everyone must. I am lucky to live where I do, in the time that I do. What I have is more than enough, it makes me so happy but I can't help but dream of more. Who doesn't right?

Here are mine and Niamh's 366 photo's from today!

And Niamh, looking (and clearly feeling) a lot better, when dad took us out for a coffee in Starbucks (well I had a coffee, Niamh had a bread stick!)

Night folks!

Still suffering.

Still have this ears, nose and throat thing that Niamh gave me. Chris has already shaken it off, lucky man! I hate having something else on top of the normal. I think I have gotten used to feel crappy (normal crappy, not like this) and can do day-to-day bits with the help of some equipment and resting when Niamh naps. Having something else on top of it basically makes me useless.

Chris had to go back to work today after having to have 2 days off work to look after me and Niamh. He started at 7 this morning and it wasn't too bad. Niamh had a major case of the grumps but actually ate her breakfast for the first time in days and went down for her nap easily. I just collapsed on the sofa. I have my dad coming round as soon as he's done helping my mum with something for the rest of the day to help me, until Chris gets in. I just feel useless and horrid. It doesn't help that Niamh, who usually enjoys playing so independently, doesn't know what she wants. One minute she's happy playing, then she wants me to cuddle her, then she doesn't. I just can't keep up.

Chris thinks that I do too much. I try very hard to be the best mum possible, even with my conditions, and I still continue to try my hardest even when I have something else on top of my norm. He's probably right, but other "normal" mums have to just get on with it when they are unwell, why can't I? I KNOW I shouldn't for fear of another relapse but I FEEL like I should. I really do. It makes me think that I am letting both Niamh and Chris down if I don't. If I can't play with her in the usual ways, if the flat isn't as tidy as I would like. I feel like I have failed.

I suppose this comes from my work ethic, which is really built into my character. I am an all or nothing type of person. If I can do anything however big or small I put my all into it and do my absolute best. Because I can't work at the moment I take the whole house-wife thing quite seriously. Yes I can only really cook using the slow cooker (seriously brilliant energy saving device) but I like to make sure the house is as clean and tidy as possible and that I get a good amount of play time with Niamh everyday.

In order to help me do all this myself and Niamh have a very rigid routine, which my friends don't always understand. Yes, children need a routine, but most of the time that can be flexible. But M.E patients, M.E patients need a rigid routine, that is the same (where possible) day in and day out. This is ours. Chris gets up with Niamh at 5, then wakes me at 7.30 before he goes to work (unless he starts earlier or later). I get up and do Niamh's breakfast then she goes down for a nap about 8 and I have a rest/sleep on the sofa until she wakes up (usually between 9.15-9.30).  Niamh has some playtime and I rest on the sofa and go and lay on the floor and play with her. We have Cbeebies on and I talk to her about what is happening in each of the programs.  If I am up to it, this is the time we will try and get out for a while. She has a bottle at 12, lunch at 12.30 and goes down for her afternoon nap at 1. I go back to bed until she wakes up which is usually between 2.30-3. After 3 tends to be when my family visit, they came and play with Niamh and do the odd thing for me, like help me to clean or hoover for me. My sister often does my food shopping for me, and my parents bring me things that I need when I can't go and get them. Niamh normally has a bottle at 4.30, dinner at 5, bath at 5.30 then quiet time and bed between 6-7. I often go to bed not long after her, it doesn't mean that I have much time to myself, or to relax but caring for Niamh is the most important thing to me!

If I can't even do the little things that I allow myself within the rigid routine I feel awful. I was once SO independent. I didn't like people doing things for me, and I am still that person. I STILL don't like it when people do things that I think I should be doing, it makes me a very bad patient! I am forever being told off by everyone for doing too much and for not asking for help when I clearly need it. But I don't like asking for help and I don't like the guilty feeling I get when people are doing things for me, I don't like putting people out! I have actually had full blown arguments with Chris because I was trying to do too much for him, to help him out. I understand why but that is the complete opposite argument to most couples! O well I don't like to be normal, can you tell?!

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

Niamh, despite pooping for Britain and throwing up still wants to explore her bedroom!

And me, ill, went back to bed as soon as Chris got in, having problem holding my head up for more than 5 minutes.

Night folks!