There isn’t a lot to update on this week, it has been nice and quiet with only routine appointments. Therefore, in conjunction with www.telmnow.com I have written, this post, which as the title suggests is an insight into a typical day for me.
So there’s an easy place to start, morning. Today is a lovely day for me, my husband is working from home and is therefore doing the school runs. That means I have a little bit of a lie in and don’t get up till 8:30am, which is nice because I didn’t get to sleep until about 2am (this is actually early for me). I woke a couple of times during the night with angina pain*. The first task of the day is actually getting up, showered and dressed. The medication I am on makes me feel like I wake up every morning with a hangover – without the fun of actually drinking the wine. So my first hurdle is getting into the shower, which is over the bath, I sort of sit and swivel to be able to get my legs over and the lean against the bathroom cabinet to get out again. I always shower in the morning because this physically is the best time of day for me.
The next task is getting dressed, something most people don’t even think about. I start by putting on ankle supports, as my ankle joints are unstable and have been giving way a lot recently. Of course to put on ankle supports, socks, jeans etc I need to sit down. At the moment we don’t have a chair in the room so I need to either lean awkwardly against the chest of drawers or sit on the floor. I have just had fabric swatches arrive and have chosen the one I like so very soon I will have a chair. As a bit of an aside, anything that I have around to help me, I go out of my way to make sure it doesn’t have that ‘hospital’ styling that so many aids have. Right, so I was talking about getting dressed, my shoulder and elbow on the left side don’t move very well so I always have to be aware of that when I am dressing, e.g. for a shirt the left side arm has to go in first otherwise I don’t have the range of movement to get it in the arm. Once I am dressed the elbow brace goes over the top – I find it adds that certain je ne sais quoi to my outfits. Drying my hair - when I was trialling a lot of different medication for my heart condition my hair started to fall out, so I had it all cut very short, it is growing out but it is not quite jaw length yet. Drying my hair has to be done in stages because I can’t hold my arms in the air for that long. By this time it is about 10:30.
I go downstairs, stairs in either direction are painful so down doesn’t necessarily make it easier. I have a blood test book for 12 so I am fasting. Though this isn’t a problem as my morning tablets usually make me feel nauseous. Blood tests are always interesting, my veins play up a lot because of the problems EDS causes with my vascular system. This time wasn’t too bad it only took two attempts. I have had it take 8-10 attempts before but that is usually when I am very poorly and on my way into hospital.
I purposefully booked that blood test late in the day because I had another appointment in the local town, so to save me making the 30minute car journey a couple of times in the week it’s just once. So from that appointment I went straight over to the other side of town to my next appointment which was at the university. I am considered a disabled student so I needed to go into the university to see if there is any way they can help me. Now I didn’t think there was much they could do as my studying is all my own research work, rather than a taught course where I would have to go in for lectures. However they have recommended some software that might be useful, so it was worthwhile going in. It really focuses your mind when you have to sit down for a couple of hours and tell someone every way in which your illness affects you. I felt quite deflated afterwards. Of course the tiredness and pain from sitting for a couple of hours do not help.
I also need to pick up a prescription from the main hospital, as it’s a controlled drug I have to go to the main hospital pharmacy. I phone my doctors PA to see if my prescription is ready and it isn’t going to be done until tomorrow so I start to make my way home. Half way home I get a call to say actually my consultant had popped back in the office and done my prescription, so I turn around and go and pick it up. My consultant’s office is over the other side of the hospital to the car park so, for me, it is a long walk. I swear the office gets further away the closer I get, I know that I get slower and slower – I am being lapped by little grannies with walking frames. I finally get my prescription and hand it in to the pharmacy. Once my prescription is ready and the pharmacist calls my number, I get to the counter and he says ‘hello Rebecca, how are the fentanyl lollies working out for you? Fortunately I haven’t had to try them yet. It comes to something when the major hospital pharmacists know you by name.
I finally start to make my way home by now I am exhausted, in a lot of pain with my joints and also having some bad chest pain. I get home around 5 and finally have something to eat, I guess my ham and cucumber sandwich is actually breakfast. I put my feet up and relax for a little while, faffing about on the internet looking at dressing room chairs and a little blog writing. Before I know it its 9pm and I am putting the oven on to warm up for dinner. Yes I know it is really late at night to be eating dinner but twice a week my husband teaches martial arts and so doesn’t have time to eat between work and the first lesson, so he and I eat afterwards. Anyway, the oven in our house is in a strange position, it is basically at floor level. Getting down to put the food in is ok, gravity plays its part. Standing back up again though is really difficult, so my husband has to help me and then I get reminded that I should also be wearing my knee brace. We sit down for dinner at probably about 10, eating makes me feel nauseous so I pick at it a little bit and then leave it. You never know I might lose a bit of weight, always have to look on the bright side.
We head up to bed, by this time of night it is easier to list the parts of me that don’t hurt. Getting up to bed, now there is a challenge. There is of course the normal stuff that everyone does, let the dog out, lock the house up, making a cup of tea etc etc. The big challenge is the stairs, you see in our house we have gremlins that make the stairs steeper and steeper as the day goes on - by bed time the stairs resemble the climb to Mount Doom. However the reward at the top is a bit nicer, bed as opposed to a fiery pit. I digress, my husband always insists on carrying my tea upstairs for me, I like to think it is actually because he is a gentleman and not for safety reasons. Getting up the stairs is a slow process that requires a lot of leaning against walls and bannisters – it’s not very graceful. Talking of not very graceful, getting undressed and ready for bed holds the same issues as getting dressed but now every joint is stiff and painful. The elbow brace has to go back on once I am changed as I have to sleep with it on. This whole process has resulted in, what I like to call ‘controlled sitting’ it’s not a full on collapse as I am conscious, it is just an occasion where I find myself sitting somewhere I wasn’t necessarily intending too.
So it’s now midnight and we are tucked up in bed. Now the next challenge, sleep. I am exhausted, getting to sleep shouldn’t be any problems at all, right? If only it worked like that, the pain tonight that is keeping me awake is in my legs, ankles and toe joints. By 1am I give up and check Facebook, play Yahtzee and candy crush. It’s my entertainment in the wee small hours of the morning. The light from my phone isn’t enough to wake my husband and so I am surrounded by snoring, husband on one side and dog on the other side. She is a miniature sausage dog, wow for a small dog can she snore loudly. Even with our new bed which is fully adjustable, getting comfortable is difficult, I always used to sleep on my right hand side but then my shoulder started to sublux repeatedly during the night. So I started to sleep on my left hand side, bet you can’t guess what happened. Yep the shoulder started to come out and was really painful, hence why I had that shoulder operated on. However due to the elbow pain on the left side I still can’t sleep on that side, I have also started to get the same elbow pain on my right side. Only another couple of months and hopefully we can operate. My surgeon is trying out a new operation which he thinks would be good for me so we are waiting to see how it went on guinea pig number one and then I am guinea pig number 2.
So of course now you have the age old problem, its 3am and you have finally got comfortable, the pain medication has kicked in and you are starting to drift off to sleep, when of course you need a wee. So you get up go to the bathroom and start from square one all over again. Once I got to sleep I was woken a few times during the night with angina pain, stomach pain, back pain and a vascular spasm in my brain right behind my left eye. Then the alarm goes off and I do it all again, the appointments are different but the struggles are the same. The cycle of pain and lack of sleep is dreadful for concentration levels.
As promised the chart of a typical day and the angina pain that I get. The pain score is the standard 1-10 scale that is used. The time is self-explanatory and the colour of the bar represents the duration of the angina pain.
* I sometimes under sell my angina pain so below is a graph that charts a typical 24 hour period.