I miss the days when....

Last night, on twitter the hashtag #Imissthedayswhen was trending and I sat there for a while thinking about what I missed and what I could write. Turns out I miss a lot since before I got ill. So, here goes, I miss the days when:

• I didn't have to think about pacing.
• I didn't have to consider where a wheelchair would fit in my house.
• I didn't need a bath lift
• I didn't need loads of different equipment to do even the most basic of things.
• I didn't have to have two naps per day,
• I didn't have to take upwards of 20 tablets every evening, not counting the others throughout the day.
• I didn't need so much help.
• When I knew what it was like to feel healthy, well.
• When I didn't have to wear sunglasses in the house, or in the rain.
• When I didn't have to have ear plugs in when I went out.
• When I could wash my own hair.
• When I could look nice, wear the clothes I wanted to wear rather than those I could wear.
• When I could do my own hair and my make up the way that I wanted to.
• When I had my own identity, when I didn't have to blend in because all I can wear is tracksuits.
• When I wasn't completely exhausted all the time.
• When I could go out with my friends without weeks of planning beforehand and weeks of resting afterwards.
• When I didn't have to give myself injections.
• When I could think straight and remember things, find the right words.

There are probably thousands more but I really don't want to bore you all to death. I'm sure other M.E/CFS people understand the amount of things this disease takes away from you. The amount of things that you do end up missing. I try not to dwell on things, if I thought about all the things I missed for too long I would just get depressed. I've been iller in my life, with this disease, so, here are somethings I DON'T miss from then:

• Being stuck in bed.
• Being carried to the toilet.
• Being fed.
• Not being able to read.
• Not being able to watch TV or go on the computer.
• Living in a completely blacked out room.
• Having to wear and eye mask almost all the time.
• Having to wear ear plugs almost all the time even though they make my ears hurt.
• Being dosed up on strong pain meds continuously.
• Not being able to remember my name, or those of my friends and family.
• Not being able to string a sentence together or talk to people very often.

So the main point here being, that for many of us at least, although we miss things from our lives before we got ill, most of us (but unfortunately not all, some people are still there) have had periods where our illness is worse than it is currently. Yes, since I've got ill I've been better, but I have also been worse. So when I'm having a down day I have to remember that although I miss a lot from my life before M.E, I have been a lot worse and when I remember the things I don't miss from that period of my life then I am so grateful for where I am. Here are some things I think about when I'm down, that remind me how lucky I truly am:

• NIAMH - I have always wanted children, for as long as I can remember. But when I got ill I thought it was a dream I would never be able to realise. Then I got pregnant, when I was told my mediciation would prevent me from being able to. I actually got called selfish a few times when I was pregnant. A feeling that I had deep down, that I couldn't be a good mum because I was disabled. But instead of dwelling on it I decided I would prove my critics wrong and be the best mum I could be, Niamh would have a good life, regardless of my illness. It was hard work, and after spending a lot of time at the hospital my beautiful baby girl was here and I haven't looked back since. She is the only thing I need to think of now when I'm having a down day. She makes my world so much brighter and gives me a reason to behave myself health wise and carry on no matter what. I want to be the best mum I can be, regardless of anything else.

• Chirs - He stuck by me, through everything. Even when I became bed bound 6 months into our relationship. Even when he had to feed me and carry me to the toilet. Even when I yelled at him, cried at him and begged him to leave me. He married me. He gave me my beautiful little girl and, although he gets of my nerves occasionally (who has a boyfriend/husband who doesn't) I love him more everyday. He continues to care for me and make me smile. 

• Mum and dad - my parents have been amazingly supportive all my life. When I got ill this support strengthened, when I had Niamh it strengthened further. They come and see me everyday. They help with the housework, they help look after Niamh. They help me finically, physically, emotionally and in every other way possible. I love and respect them so much.

• Angela and Karl - my sister and her boyfriend are a wonderful support to me, Chris and Niamh. Myself and my sister get on really well, unless we are living together, we simply can't live together without fighting like cat and dog. We may fight sometimes but its often because the other is the only one we feel comfortable expressing our feelings too. We know we love each other really. She really does go out of her way to help us, to look after Niamh, cook for me and much much more. Niamh loves being with her and they are so fun to watch playing together. Her boyfriend, Karl has always made me laugh and kept me smiling even when I have been in hospital. He keeps Chris entertained too, hee hee!

• My best friend Leah and her family - They have so much going on, what with four children, one of whom has lots of illnesses and disabilities of her own. Leah also has an illness that can leave her very disabled at times, and has a lot of similar symptoms to M.E. Yet she still manages to be there for me whenever I need her, I know I can just text or call her and she'll help me as much as she can. I have known her for 23 years and she is more like my sister than a best friend. Her husband and children always manage to make me smile.

• Chris's family - supportive and always there when I need them.

• Friends - I am lucky enough to have friends that haven't abandoned me since I got ill, I don't get to see them as much as I want to but they are still there.

I think if you have a long term or chronic illness then it is important to think in a positive manner. Lets be frank about this, if most of us sat down and thought about the bad aspects of our lives and illnesses it would simply result in a lot of depressed people. Although I firmly believe that the majority of people with M.E also have a form of depression (lets be honest, who wouldn't be a bit depressed if they suddenly had all normal aspects of their lives stolen from them) and that this depression will improve or worsen as the disease does. This isn't standard depression, and is in no way the under laying reason for the illness, more a symptom of it. One that learning to think in a more positive manner can help to control, and for me at least is really nice knowing that I can make myself feel just a tiny bit better by thinking of happy positive things! It did take me a long time to look for the positives instead of focusing on the negatives. I still have "o woe is me" days, but they are fewer and I let myself get fed up, cry a bit, maybe have a glass of wine and a tub of ice cream then I sleep and hope to wake up with a different attitude.

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

And Niamh, the pineapple she was eating made her pull a funny face! I LOVE IT!

That's it for today people, it's a long enough entry as is!