For a while now, I have had a major problem getting out of bed in the morning; the hardest part being actually lifting my head and sitting up from lying flat. The muscles in my neck and upper body just haven’t felt strong enough to do so and there have even been a few occasions when I have found myself stuck in bed recently; not fun. This is something that I had particular trouble with as a teenager, when my diagnosis was Dermatomyositis, a form of muscular dystrophy. Monitoring of this disease involved assessing my ability to get up from various positions – lying and sitting, on the floor and from different heights – and I was often photographed and videoed carrying out these transitions. So I had been concerned there was some crossover occurring.
In hospital, it was great because the beds are remote controlled so you can raise the backrest, gradually sitting you up. But since being home, I have dreaded getting up each morning, as I seem to wake up in agony each day and struggle to sit up, even with help. The effort just seems to put a strain on my muscles, as well as my inflamed joints, and it’s hard to find a way of assisting me that doesn’t cause pain, so it has been a case of grin and bear it. At least it’s only once a day – no chance of me risking a nap lying down during the day! .
When I had my Intermediate Care assessment at home, this was one of the first issues I mentioned and they offered to provide me with a ‘Pillow Lifter’ that would fit to my bed. This sounded great and I was really excited for it to be delivered and set up as I had a feeling it would make a huge difference to my everyday life. Well, yesterday my nurse arranged for someone to come and fit it and show me how to use it safely and I just spent my first night / morning with it – all I can say is Fantastic!
The pillow lifter itself fits onto your side of the mattress (if you have a double bed), with a frame and includes an inflatable beneath your pillows, which is attached to a pump and the mains. Your pillows sit on top and are held in place by a flap of material; there is also a padded area that projects slightly below your pillows (resting under your back), which I was worried would be uncomfortable to lie on but this isn’t the case. It does feel different to lying on a regular bed but this will just take some time to get used to. I still managed to have the best night’s sleep I’ve had in a long time, so that says a lot; in fact, I’ve even wondered if the padded area holds you in a ‘better’ position for sleep. I can only lie on my back right now, so don’t know what it would be like to sleep on my side, but I don’t see there being any problem for those who do.
When morning came and I wanted to sit up, it was just a case of pressing the ‘up’ button on the little remote; I found it best to do this slowly, so that it raised me in stages as it can inflate quite a lot and I didn’t want to end up sandwiched in half! I did seem to have slipped a bit down the bed, meaning I had to shuffle to be seated properly, but I think that is just one of those things that will take practice. It does make a motorised noise when it inflates, but this only takes a short time. It would probably disturb a partner, if using it while they were still sleeping, but it’s a small price to pay I think. Luckily for me (and my boyfriend), I’ve been getting up with him so that he can set me up for the day before he leaves for work. He is the worst sleeper, any little nuances can keep him awake, but he slept fine next to me and the pillow lifter – when lowered, it isn’t much different to a stack of pillows.
I am extremely happy with my new sleeping buddy and can already tell that it is going to take the pressure off some of my joints/muscles and maybe even reduce some pain in the process. My upper body already seems to have benefited from not having that strain of sitting up myself this morning, although I might be jumping to conclusions there, it is still early days. I wish I had looked into getting something like this long ago, but it is better late than never. If any of you are having similar struggles though, do see if there is something available that might help as even making little things that bit easier can have a huge impact on our well-being. My equipment has been provided by the NHS but there are also things that you can buy, if you are in the position to do so. It would be money well spent.