It has been over a week since I was discharged from hospital and, finally, the care that should have been in place to support my rehabilitation at home is starting to happen. The GP made a home visit on Tuesday afternoon; I seemed to have taken a couple of steps back in my recovery and couldn’t manage to get downstairs, never mind to the doctor’s surgery. The main issue he came to help me with was pain. It had been much better on leaving the hospital than on entering, but it was still severe enough to prevent me from doing much and I was taking quite a bit of Oramorph to top up the baseline Morphine throughout the day.
The GP was quite surprised at how much I had deteriorated since I last saw him and, knowing my reluctance to take strong pain medication, reassured me that this was the right step to take at this time and that, once the Still’s Disease was under control, he would help me to reduce back down gradually. He told me that I needed to take the Oramorph for all significant pain and not just when I got to the point of desperation, (which is what I had been doing), otherwise, he would never be able to find the right dosage. The next step was to record the times I was taking this Oramorph over 24-48 hours – 10ml an hour as needed – so that he could work out how much to increase the tablet form that I take twice a day, in order to control my pain at a steadier rate. The way he explained everything made perfect sense to me and by taking the time to do so, he set my mind at ease.
On Wednesday afternoon I was visited by both a Social Worker and an Occupational Therapist, to discuss the care and support I need within the home, throughout my rehabilitation. It would take me too long to go into every single detail so I’ll try and stick to the main points. Firstly, on going through my daily routine we picked up on the things I am struggling with the most:
Physically getting out of bed in the morning, especially sitting up from lying flat or even propped up on pillows. I need my boyfriend to lift me up each morning before he leaves for work and cannot nap during the day as I would get stuck.
Showering/Bathing – as I can’t get into either safely at the moment and am relying on sponge baths twice a day instead, once my pain settles.
Dressing – I can do this eventually but it would be nice to be dressed at the same time each morning. My boyfriend helps with certain items of clothing before he leaves for work but I have too much pain to do the rest until later on, sometimes in the afternoon.
Getting downstairs – I depend on crutches and assistance to get me downstairs and am in too much pain to attempt this before my boyfriend leaves in the morning. By the time my pain settles, there is nobody to assist me and it is not safe to do so on my own, meaning I am stuck upstairs most of the day.
As a solution for the first problem, I am being provided with an electric ‘Pillow Lifter’ that discreetly fits on top of the mattress, under my pillows, and raises/reclines at the touch of a button. This is going to be hugely beneficial for me, as sitting up in bed has been a longterm issue and I feel it has actually been putting a lot of stress on my upper joints/muscles. So, I’m quite excited about this; the prescription has been submitted and it should be delivered next week!
Looking at our lovely big shower they both agreed that it wasn’t safe for me to use at the moment, even with the adaptations they could make to it, such as a block step to help me over the large step into the shower and a fitted corner seat. After lots of umming and ahhhing, they suggested that maybe bathing would be safer. I haven’t been able to get into the bath for a while now, having been unable to bend my knees, lift my legs over from the hips, or to support myself with my arms, it has seemed pretty impossible. They have suggested a bath lift and, although I haven’t seen what they’re ordering for me, the way they explained it is that I will need someone to help swing my legs over and around, but once that’s done, the lift will lower and raise me in and out of the water. Again, this sounds brilliant and I am really excited to think I might be able to enjoy long soaks in the bath once more – not only so I stay smelling lovely and fresh, but to relax and soothe those tensed up muscles. I do have one slight concern though and that is the fact that I will be given a run through on how to use it… by Mark the physio. I’m thinking that if this really is a trial run, then I will have to root my swimsuit out and have my boyfriend close at hand! 😛
Between us we agreed that, although the dressing situation is not ideal right now, it is likely to improve when I get better management over my pain, both through the increase in pain medication that is due and also as my mobility (hopefully) increases with the Physiotherapy. This is the key thing that everyone keeps mentioning and yet the last thing to be put in place. My GP has chased his own referral up again and added that I am now a ‘crisis case’ and need Home Physio pronto, otherwise I’m going to deteriorate further. Meanwhile, I am doing my best to keep as mobile as I can but need the profressional input to do so properly. But in terms of dressing, there are aids that can help with things like putting on socks etc, but these are not funded and we are managing with our little routine for now anyway. I manage to change into clean clothes each day and that’s all that matters.
As for getting downstairs during the day that is still a big no-no. Ours is a very old, wooden staircase and they said they felt unsteady themselves and did not want me attempting it on my own with the crutches. The Stannah man is coming to see if it is possible to fit a stairlift, but they very much doubt that this will be the case; instead, there’s a chance they could fit a second bannister rail so I can alternate my weightbearing arm, but I still need assistance on the stairs. The Social Worker has suggested that he arrange someone to call in each afternoon, as part of my care package, to assist me downstairs and set me up there for the rest of the day. It is just impossible to do so in the morning right now, because of the level of joint pain and restriction I’m experiencing, but, again, this should change over time – fingers crossed. At least we are fortunate enough to have a ‘Snug’ upstairs, with a sofa and TV etc, and this is where I am spending most of my time.
A few other things that they mentioned were applying for a Disabled Parking ‘Blue Badge’ for my boyfriend’s car; people have been telling me to get one for ages but I always felt there were people that needed the spaces far more than me. They have referred me to wheelchair services, as I’m pretty much stuck in the house right now; I had a trip out in my friend’s Mum’s wheelchair last week and it was brilliant, so I know it will give me a lot more freedom and it should only be temporary. The Social Worker also mentioned that it might be possible for my carer to take me out for a few hours a week, as he is concerned about how much time I spend at home alone. This has partly been my own decision as an introvert though, but I am realising that it isn’t entirely healthy and am open to the idea of some short trips to get fresh air, which I’m very much dependant on others for at the moment. Even introverts get cabin fever!
I think that covers all the main points; they watched me carry out certain tasks too, like getting out of bed and off the sofa, assessed my level of mobility with the zimmer, did lots of measuring of heights and told me I need a more supportive chair to sit in – our new comfy, corner sofa is too low and squashy 😦 – but I will have to fund this myself, so that’s on our shopping list for this weekend. The two aids will be delivered and explained as soon as possible next week and the Intermediate Care Package will start next week too, so it’s all go.
I never knew that this care was available before now; I know I was supposed to be discharged with such things in place, but it took my aunt to chase it all up and make it happen really. But complaints aside, I’m really hoping that this is going to be a turning point for me, both physically and in terms of the support I need, which is going to help emotionally too.