It’s hard to tell people how you feel and what you do in a day, as quite often you will hear “every day is different”. That couldn’t be more true. Every day is a different day, new challenges, new pain, the same pain, same routine, a bit like being on a roller coaster and not being able to get off, but going round in circles. I’ll try and tell you a typical day!
Have you ever tried taking on your day on about 3-4 hours sleep, and I don’t mean now and again, I mean every day? Waking up feeling exhausted, because you took tablets the night before to help the pain and help you sleep? All you want to do is sleep for the rest of the day, but knowing you can’t because you’ve to work. But as soon as you’ve opened your eyes the pain starts and that’s before you’ve even moved from the bed. Now try moving to get out of bed, try standing and then try walking, that’s when you can judge what kind of day your going to have. If I can walk, the day might be ok. If I can’t, well today is the day I struggle.
Showering/Dressing. Now usually this doesn’t take much effort or thought does it? In, out, dressed, job done. Only how do you wash, then dry yourself when you can’t really bend? The bottom of me stays wet till I can get sat down to dry my legs and toes. Socks. Bain of my life, what a daily battle I have with bloody socks!! After all that hassle, the day hasn’t even started and I’m already shattered!
Life now pretty much revolves around tablet taking times, breakfast then tablets, lunch then tablets and so on for the rest of the day till you’ve taken atleast 16 tablets by the time you go to bed again. Appetite. Some days im hungry, but most days, I’ve no interest in food, it’s literally a case of eating to take pain relief. Drinking. I drink quite a lot of water, I guess I’m dehydrated, which then means the toilet stops. Toilet. Drinking more means more toilet stops. Imagine going to the toilet, then not being able to get up from the toilet because all of a sudden your back has popped, but it’s a week day and there’s nobody around to help you, so you just have to stay where you are and breath through the pain till it disappears.
Bed. We all would love to be there when we are working, back in bed, cosy under the duvet, but for me, lying down is the only thing that I can do to take the pressure of my back from standing, sitting or walking. Do you know how it feels to be on your bed during the day, even if it is on top of the covers? I feel useless, literally a waste of space. I lie there and think about all the things I should be doing, but just don’t have the energy. I’d much rather be sitting on my sofa, than shut away in the bedroom, but it’s the only thing I can do to take the pressure off, which then eases the pain, a little.
Exercise. I’ve so many exercises from Physio to do, it’s like a work out! Some I have invented or adapted from others, but they all seem to help (and all have been Physio approved!!) Knee rolls, knee bends, ankle, leg stretches, pelvic muscles, pelvic tilts, bending, step ups. Do too much of an exercise and that will set me back weeks. It’s hard work trying to find a balance between too little and too much.
Walking. I have to go for a short walk as often as I can. Not a problem you say, anyone can do that. Sure. But add in the pain your in that day, the hip bursitis kicking in with every step you take, the exhaustion because you haven’t slept, the weather (is it raining, or are the pavements icy for example) and the route (where am I going and how far is it, as I have to come back the same distance) and knowing that as soon as your back from your walk your straight back to bed because the pain you were in before has just intensified.
Housework. Be that washing, cleaning, tidying up, anything around the house that any person normally does, it’s twice as hard for me. I can’t just bend down to pick something up off the floor, I have to plan it. By planning it I mean, where is the nearest worktop, or wall or shelf so that I can support myself and get myself back up standing straight. Am I able to bend at that precise moment, has by back twinged, am I going to fall over, how do I get myself back up. Even doing the dishes, I can’t fill the sink of water as I can’t bend forward, just that little bit, to wash the dishes, I have to be standing straight with the tap running. I can’t get anything from the lower cupboards either (I think that must be where all the chocolate is!!).
Sleep. We all know that Sunday night/Monday morning going to work feeling that washes over you, the instant dread feeling. But I have that every night. Every night I dread going to bed because I know im not going to sleep very long, that I’m going to probably to be in pain tomorrow, but I just don’t know how bad, and that I still have to function the following day no matter how I’m feeling.
And so the routine, the same process, the same challenges, all happen the following day, the day after that, the week after that. Nothing changes but the ability to smile through the bad days, to put a front on when you see people. To act like everything is ok, to act like your feeling great that day. The only thing different is the day, the date, the month.
Every day is different after all……