The last couple of days have been so different to the last couple of months. On Friday I saw my GP and my medication changed yet again in an attempt to get on top of the headaches. The last few weeks have seen a shift from no energy of the 'I've just had 'flu' for a month' type to the 'I haven't slept for a month' variety, in other words no longer weak and wobbly, just exhausted and tiring further very easily.
The not having slept bit isn't actually that far off, due to prolific hot flushes/night sweats I've had great difficulty getting to sleep, and then once asleep being woken every hour or so until morning. And broken sleep does not a happy Anna make. It's no wonder really that I keep crashing out for an hour or so during the day to try to catch up.
Whilst the underlying issue seems to be gynaecological my main concern for the short term was to get on top of the headaches, then at least I could function properly when I was awake. The feeling of thinking through a fog and feeling as though I was constantly on the verge of a migraine was getting me down. Hence the change of medication, which is simply double the dose of something I already take for my arthritis.
Saturday felt a bit better, I got quite a few emails done and wrote most of a report. Sunday I managed to proof read some Friend Newsletter articles and really make inroads into the backlog of 'must get around to' emails that had been building up in an ever increasing guilt pile, and today I managed to read a substantial chunk of the YM Documents in Advance on top of getting other things done! What a difference, the first time I've been able to sit down and read anything for longer than about 5 mins in two months - I feel as though I've finally started to get my life back.
My head is still sore but more bearable, I can't cope with movement very well still as 10 mins pottering around the garden after hanging out the washing proved, but I can think straight and my eyes don't feel like they are boring into the back of my head when I read anything. My stomach still aches when the painkillers wear off, and is tender at all times. I still look like I'm about 4-5mths pregnant and can't even do up my trousers any more even if I wanted to put up with the discomfort of them being tight, yet my weight has hardly changed. And yes, I do still tire very easily, I got a bit carried away with feeling so much better today that by 3pm I was worn out and back to lying on my bed listening to an audio book. But there is progress, even if I have to sit still to make the most of it.
Due to a communication breakdown I'm back to square one with a referral to a specialist so it's back to the GP again this week. Maybe the blood tests I had done on Friday will show something useful, but with my track record so far this year I'm not holding my breath! There is a bit of a feeling of two steps forward, one step back about it all, but if I can read and write/type for decent lengths of time again then I can cope with the delays. I'm back on known ground and my usual coping strategies can kick in again. I might even feel up to getting the sewing machine back out now I'm not so muddle headed and there's less chance of me sewing through my fingers (yes, I've done that before when overtired, and I really don't want to do it again).
There is light at the end of the tunnel, and hopefully it isn't the oncoming train...
Monday, March 17, 2014
dealing with bureacracy
Having spent last year avoiding the necessity for State benefits through some very careful budgeting, this year wasn't looking so promising. To start with I didn't have the same sized financial cushion I started last year with having spent about half of my redundancy money getting through the year with little regular employment. Then of course I got sick, which when you rely on casual work to top up your regular pitifully small income ($15 a week less than I pay in board and lodging, in case anyone thinks I'm exaggerating) kind of stuffs things up. At least the regular work I do have is in my own home, can be done in my pyjamas, and when need be I can head straight back to bed afterwards.
So my GP decided I needed to be getting some financial help, filled out the medical forms and sent me off with 'you will be making an appointment today, won't you?' So I dutifully rang the helpline, got them to send me the form and made an appointment, knowing full well I'd hear all about it if I didn't. Sometimes being a family friend of your GP can be a mixed blessing!
Well filling in the form was exhausting in itself, and was promptly followed by a two hour sleep. Luckily I have internet access at home, online banking and emailed payslips so could track down all the relevant information without too much difficulty, even double checking against my IRD (tax) online account. It is no wonder people often need help with or stuff up applications. As I filled it in I remembered meeting Elspeth in a cafe in Huddersfield to fill in my form for signing-on over the university summer break, back in the days when you still could - was it a B some-number-or-other form? She and Ben had run an interest group at Yorkshire Friends Holiday School that year on how to fill in benefit forms, such was the height of unemployment at the time (late '80s). My biggest struggle this time however was managing to think straight and do the addition required whilst dosed up on painkillers.
Coping with the actual appointment at WINZ was a much bigger challenge than I expected. I knew I was struggling to think straight, but still somehow I expected to be able to manage. Well I did, sort of, in that I got the benefit approved, backdated and in my bank account by the next morning. But what I was told and quite how things stand didn't really match up and I was too muzzy headed to pick up on this, even though I knew I had read all the stuff (albeit with a stonking headache and dosed up on painkillers...) which told me quite clearly that what they were saying wasn't really the case.
It was a friend on facebook who pointed out the discrepancy and offered to ask around folks she knew if there was an advocate in the area who could help. At which point I realised that I could, well should, have asked if someone from the Kaitaia Peoples' Centre could come and be an advocate for me. However had I been thinking straight enough to do that I would probably have been thinking straight enough to know that I'd read something different on their forms to what they had told me! It reminded me of carrying Rescue Remedy everywhere and seldom thinking to use it myself when I need it, only dispensing it to others I can see are in need, as when I need it myself I'm usually in no fit state to recognise it!
This whole experience, from hospitalisation, to discharge, to dealing with life afterwards has made me realise that there must be many who don't get the help they need because they don't know it is there or how to get it, or for whom it simply falls into the too hard basket to deal with. Our benefits system is geared towards minimising the number of claimants rather than helping people get everything they are entitled to. Yet again the concept of a universal basic income stands out to me as a means of ensuring people don't fall through the net. I'm lucky in that I know I'll still have somewhere to live regardless of what happens, if my board money is late well as long as it is paid eventually that is okay. Many others are not so fortunate and the stress of keeping a roof over ones head and food in the pantry when you are least able to manage it surely hinders recovery. It isn't like you get discharged from hospital with an information pack explaining what you might be entitled to, how to get it and what to do about any follow-up treatment or referrals that may be required, somehow you are expected to figure this out for yourself at a time when you're probably least capable of doing so.
I'm not yet sure what to do with all this going round in my head. I've only just reached the point where thinking coherently for any length of time has been possible. But it is something I don't want to forget about, maybe one day I'll be able to help someone else through the maze and give them the help I obviously needed, even if I couldn't see that at first.
So my GP decided I needed to be getting some financial help, filled out the medical forms and sent me off with 'you will be making an appointment today, won't you?' So I dutifully rang the helpline, got them to send me the form and made an appointment, knowing full well I'd hear all about it if I didn't. Sometimes being a family friend of your GP can be a mixed blessing!
Well filling in the form was exhausting in itself, and was promptly followed by a two hour sleep. Luckily I have internet access at home, online banking and emailed payslips so could track down all the relevant information without too much difficulty, even double checking against my IRD (tax) online account. It is no wonder people often need help with or stuff up applications. As I filled it in I remembered meeting Elspeth in a cafe in Huddersfield to fill in my form for signing-on over the university summer break, back in the days when you still could - was it a B some-number-or-other form? She and Ben had run an interest group at Yorkshire Friends Holiday School that year on how to fill in benefit forms, such was the height of unemployment at the time (late '80s). My biggest struggle this time however was managing to think straight and do the addition required whilst dosed up on painkillers.
Coping with the actual appointment at WINZ was a much bigger challenge than I expected. I knew I was struggling to think straight, but still somehow I expected to be able to manage. Well I did, sort of, in that I got the benefit approved, backdated and in my bank account by the next morning. But what I was told and quite how things stand didn't really match up and I was too muzzy headed to pick up on this, even though I knew I had read all the stuff (albeit with a stonking headache and dosed up on painkillers...) which told me quite clearly that what they were saying wasn't really the case.
It was a friend on facebook who pointed out the discrepancy and offered to ask around folks she knew if there was an advocate in the area who could help. At which point I realised that I could, well should, have asked if someone from the Kaitaia Peoples' Centre could come and be an advocate for me. However had I been thinking straight enough to do that I would probably have been thinking straight enough to know that I'd read something different on their forms to what they had told me! It reminded me of carrying Rescue Remedy everywhere and seldom thinking to use it myself when I need it, only dispensing it to others I can see are in need, as when I need it myself I'm usually in no fit state to recognise it!
This whole experience, from hospitalisation, to discharge, to dealing with life afterwards has made me realise that there must be many who don't get the help they need because they don't know it is there or how to get it, or for whom it simply falls into the too hard basket to deal with. Our benefits system is geared towards minimising the number of claimants rather than helping people get everything they are entitled to. Yet again the concept of a universal basic income stands out to me as a means of ensuring people don't fall through the net. I'm lucky in that I know I'll still have somewhere to live regardless of what happens, if my board money is late well as long as it is paid eventually that is okay. Many others are not so fortunate and the stress of keeping a roof over ones head and food in the pantry when you are least able to manage it surely hinders recovery. It isn't like you get discharged from hospital with an information pack explaining what you might be entitled to, how to get it and what to do about any follow-up treatment or referrals that may be required, somehow you are expected to figure this out for yourself at a time when you're probably least capable of doing so.
I'm not yet sure what to do with all this going round in my head. I've only just reached the point where thinking coherently for any length of time has been possible. But it is something I don't want to forget about, maybe one day I'll be able to help someone else through the maze and give them the help I obviously needed, even if I couldn't see that at first.
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