Feeling a bit scared tonight because I’m a lot more fatigued and in a lot more pain than I’d expect to be in accordance with my activity.
I don’t think I’m coming down with anything and I have been pacing myself very carefully for the last couple of months.
I’ve just got into bed (8:05pm) and I’m tapping this out on my phone. I’ve got a very early start tomorrow because I’m due to attend a free course run by a local organisation for people who have disabilities. Both lunch and transport are provided and I’m due to be collected by taxi at 10am.
I’m worried that this excessive pain and fatigue is a sign that I’m entering a flare-up – a prolonged period of increased symptoms. A bad flare reduces my capacity to near zero and makes it very difficult to look after myself without support. Such incapacity and not being able to properly look after myself takes a serious toll on my mental health. I have one friend who could drop in with supplies in an emergency but she travels a lot and is often not in town. Otherwise it’s just up to me.
It may not get so bad again this time. I am well aware of that and I’m certainly not trying to focus on the gloomy side. That is definitely not my way. I guess I’m just aware of how much I’m at risk while I’m still without support. Things are hard as it is day to day but in a flare up they become impossible. I suppose that no matter how positive, how Tigger I am, that reality remains and whether consciously or unconsciously it’s hard not to worry when symptoms worsen. My mood feels wobbly, better than over the weekend, but as though it’s not on solid ground. It feels vulnerable and so do I in turn.
I knew I faced a huge challenge to carry on without any support at all while waiting for the wheels of the social care system to turn. It’s been almost three months now since I was finally assessed and found to be in urgent need of support at home. I’m hoping so much that support will finally be in place by the end of this month. I hope that I will be able to take my foot off the pedal just a little and feel like just a little of the burden has been lifted from my shoulders.
I’ve had a productive day today starting with some physio exercises, then, after showering and something to eat, doing necessary admin, some domestic stuff including two very necessary loads of laundry to provide me with both clean underwear and towels. I posted some cards and letters, picked up a few errands and I met a friend in a nearby cafe for an hour which provided me with some very welcome company and conversation. She has schizo-affective disorder. As I understand it, that means that she sits somewhere on the spectrum between schizophrenia and bipolar disorder. She feels herself to be bipolar with a bit extra thrown in. She has many challenges of her own. We arranged to go to see a local band play late next month. It’s a free gig, just an hour in length, so bite-sized which fits my spoonie requirements, and is during the daytime, which is also a must for me. I’m silently praying (or something, given that I’m an atheist) that I will keep well enough to go.
It’s high time that I stopped writing and focused instead on trying to relax. I need to be asleep by 10:30pm at the latest. I still need to assess whether I’m going to need painkillers in order to be able to sleep. I will manage without them if at all possible. I also need to clean my teeth and moisturize – the last couple of bits of my before bed routine.