Take A Walk In My Shoes

To anyone who doesn't understand my pain, I will describe 24 hours in my life. 

7/8am
I wake up to my husband giving me a kiss goodbye, this in itself is a great thing and makes my day a little brighter. I haven't had a good sleep at all and most probably have a banging headache. So I go back to sleep for an hour or so. 

9/10am
So I decide to get up, I have probably been for 3/4 wee's since i first woke up, the joys of having a shit bladder. So I will get up and hobble down the stairs, holding on to the railing for dear life. Ever since I fell down the stairs I hate going down stairs, especially when my meds make me feel dizzy. I let my puppy out and I take my medication and make a cup of coffee, as I need something to pick me up. I will go and check on my two rabbits, but I will have to be careful when bending down to get their food bowls, as one wrong move can put me back to square one. I will have a piece of toast or a bit of cereal, my appitite isnt great in the morning, I will also make sure that I have a big glass of squash, as I am thirsty most of the time, and my lips are so dry. 

11/12am
So I will sit down and watch TV or YouTube. In all honesty I feel like crap. If I am having a good day I will take Leia for a walk, this will only be for about 20 minutes and I will have to really pace myself. I will get home, and litterally feel like I am going to collapse, this is probably because my fitness has dropped, but it's also thanks to my medication. I will have to sit down and have another drink. It will take me some time to feel like I am able to do anything again, so again I will watch something on TV. This might not seem like a bad thing, but when that's all you can really do everyday, it gets very tiresome. 

12/1pm
So around lunch time, and when I feel like I can move again, I will go to the kitchen. I will try and make something healthy, but when you feel rubbish, it can be really easy to get into comfort eating, even doing something like preparing a cooked chicken salad is very difficult, and I have to be careful, as I know I have to make dinner later in the day. So I will go and eat that, and around this time is when I will call my mum or nana. I find that talking to them will really help boost my day. I will play with Leia for a little while and then I will watch my favourite  YouTube Videos, or attempt to film another video.

2/3pm
Around this time I am exsausted and sometimes I try and fight it, so that I would have a better nights sleep, but i don't find this helps with my night sleep at all. It's still rubbish. Sometimes I will go and lay down on my bed (as i find this is the ONLY place where i can get vaguley comfortable) and listen to music or an audiobook and I will most probably drift off for a hour or two, but even when I wake up after I don't feel any better.  I will get up and try and do a little tidying, it's not much, but it's all I can do. 

4/5pm
Around this time I will make dinner, ready for when my husband gets home. It's usually something quick and easy, because slightly bending to cook the food can put me in so much pain. This is around the time my husband comes home from work. He will make sure I am okay and chill out. We will have dinner around 6pm and then we will sit and talk for a while, I will try so hard not to moan about how crap I feel, but more often than not it comes out. He will help me with a bit of the housework and then go back to chilling.

8/9pm
Around this time I will feel like I need a bath, I find that these help a little to ease my pain, but I can't stay in the bath for very long, I will get hot and that makes me feel super dizzy. Here comes the embarrasing part. I will have to call my husband to help me get out of the bath. I find it so difficult to get out of the bath, espcially when I feel like I am going to faint. Then he will make sure I am okay to get dressed, and if I need help,  he will do so. Then he will make sure I get donwstairs okay, and then I will make a tea for me and my husband. I will be shaking a little, but I get the job done. Then I will sit down and have my tea, by this point i am so tired and will need to go to sleep. So I will give him a kiss and head up to bed. 

10/11pm
So i will be in bed around this time, I will have to put the fan on, as I get very hot at night, and then I will put on an audio book, at the moment I am loving the Harry Potter ones, read by Steven Fry. I find his voice very relaxing and soothing. We don't have a TV in the bedroom,  but if we did I would watch Supernatural, as when I was living at home I would find that the male voices were soothing and would help me sleep. It takes me a while to go to sleep as i have to get my body used to the aches and pains as my muscles relax, sometimes i will listen to a guided meditation if I feel like pain is too much. After about 40 minutes I will drift off into a light sleep. 

2/3am
Around this time every night I will wake up in agony, and I will toss and turn for a while (after going for yet another wee) but most of the time I will feel like I need to get up and walk around for a little while, also I don't want to wake my husband. I will sit downstairs with a squash and a redbush tea, and i will do some deep breathing, and watch an episode or two of TV (loving Once Upon A Time and Pretty Little Liars) by this time my eyes are drooping and I feel like i could head back up to bed. My headache will probably be creeping back around this time. So I will quietly crawl into bed, put my audio book on and try and sleep. Again this takes me around 30/40 minutes. 

This is my day. You may not think that it's that bad, but thats one day. I have been dealing with this every day for 2 years. I have never had a day when I am pain free. Also bare in mind, I cant drive anymore, due to new laws about driving while on medication. So if I need to go out I will have to wait until my husband gets home. I have to make home call doctors appoinments, or when my huabnd can take me. Also, being on medication like morphine and my muscle relaxants make me groggy, and I am not with it at all most of the time. Its horrible. But I just want to address comments that I have been told since having this illness:
"You don't look ill, im sure your fine!"
"You are too young to be feeling like this"
I just want to say, yes you can't see my pain, but that doesn't mean that it's not real. If I am smiling and seeming happy, it will either be who I am with or I am putting on a front. And the comment I get about being too young is stupid. I didn't ask to be like this at 21. What i wouldn't give to be a normal young adult, living my life to the full. But that's just not the way my life has panned out so far. 

I really understand that others are suffering more than me, but this is the worst and most prolonged pain I have ever been in. So I'm sorry if i seem very down. Like I said before, It's hard to stay positive. 

Thanks for Reading