Tomorrow it's another trip to the GP to probably waste my time on the fruitless quest to get a diagnosis for a condition that I don't even really understand. There seem to be so many 'neuro diverse' (and I'm probably misusing that term) conditions that diagnosis is impossible; I suspect most such people probably have bits of all different conditions - different being the issue. These, like me, I feel, are people that just feel permanently and detrimentally out of sorts. It's difficult to explain, like trying to imagine what it's like to be a cat for instance, but it's been there throughout my entire life. Unfortunately the one time I try to get this recognised I'm forced to deal with a system that is prejudiced against recognising anything that might be seen to inhibit one's productivity; one's ability to fit into the mainstream mass production line.
I don't really think I have the energy to get into it with her tomorrow. She'll most likely keep me waiting; this GP has a habit of keeping people waiting for at least 90 minutes if not longer. I'm sure that can't be permissible, but, despite complaining, they never do anything about it. "She likes to take her time with her patients", that's commendable in principle, but it's not her time, is it.
I haven't heard a damned thing from the Work Psychologist since before Christmas, if I recall correctly (I probably don't, to be fair, but it feels that long). I've emailed her twice to no avail. Where could she be? Perhaps she's been moved on, shunted to a different department, or a different office elsewhere in the country. The emails didn't provoke an automated response of any kind so I assume it's still active. She could be dead, or abducted by aliens for all I know. More likely is that the department has been shrunk to the point of (even more) uselessness. Regardless I'm on my own now. There's no real interest in providing any support, and in this new era of dispassionate conservatism, I don't imagine mental health services are going to be bolstered any.
I have other issues as well, equally ignored; a metabolic problem that is labelled as 'functional hypoglycemia', but I don't think it is. It could be a simple allergy, but there's no real interest in finding out. I would have thought, having participated in a number of blood tests to find out over the years, they would have found out. I have been repeatedly, alarmingly so in fact, told I'm NOT diabetic. Maybe I am, maybe they are wrong, though that would be a staggering level of incompetence. All I know is that I have a short fuse when it comes to hunger and that, when I get hungry, it needs to be sated or I feel very dodgy. The frequency with which this happens during the day can vary quite considerably. The upshot is that, in the workplace, I would struggle. If I were my own boss or working for home in some capacity (no help with that of course) it would be easier. These subtle realities are lost on all concerned.
Hello Again,
ReplyDeleteIt's awful being in 'limbo land'; it's not that you want a label, but a diagnosis can result in more support (well, you'd think so).
I'm 19 years in and counting. In the beginning my legs were going from under me. I told the neurologists about this on many occasions. I realised over time that this was 'jerking' and that it was affecting my jaw and other parts of my body. I again raised this with neurologists, but they just shrugged. Over time, I've fallen really badly, on a road crossing, a car park, on the concrete path outside and downstairs a couple of years back; luckily I apparently have strong bones so I 'bounce', but the soft tissue damage takes much longer to heal than a break. Anyway, the last appointment that I had with my G.P. I again raised the issue of the jerking, 'oh, there's something you can take to help with that'!
So for 19 years I've had my life put in jeopardy because so called 'specialists' didn't seem to know about Myoclonic Jerking, which is apparently a common symptom in neurological diseases! I give up I really do!
As for the difficulties that you have faced, the fact is that it does impact on your ability to function in a working situation. I realise that there are many disabled people who are in work; I was one of them. Some people may have lost the use of their legs; there was such a woman in a company that I worked for, but I only use a wheelchair if I go out. People may say 'well you're obviously not as disabled as that woman over there, so you could in fact work.' The thing is though, that woman didn't suffer debilitating fatigue. I've worked whilst in a lot of pain; you do get used to it over time, but working with extreme fatigue is impossible.
So that one health problem scuppers my ability to work, just a simple thing as fatigue. This is what is not considered, understood or allowed for, like your problem, that makes it just as difficult for you to work in a normal workplace situation.
And obviously, they're so willing to help you that you've been waiting months to see this 'work psychologist'. Well, we know that many aren't there to really help, other than 'help' you to stop receiving benefits.
Hope that you managed to get your appointment soon, and it actually does help.
Hello.
ReplyDeleteYour situation sounds worse than mine. I'm not in danger of physical damage from accidents so that's a much more serious issue. Which is why I always counsel against comparisons. Everyone's problems are serious (within reason) to their own experience and consequently playing people off against each other achieves nothing. Anyone who needs help, whoever they may be, should be able to access it, without judgement or too much struggle.
Fortunately for me I think the GP is staarting to come around. I've given up on the Work Psychologist and I've explained how useless she is to the GP. I still have no idea what the Work Psychology department are intended for, but I'm sure it's something sinister. I imagine it's essentially a nudge unit affair: to convince people they are better off ignoring their problems and getting to work. These peopl are part of the system, and thus part of the problem.
Unfortunately there is a real reluctance, from all quarters, to addressing these issues. Any attempt to get a diagnosis or some acknowledgement of the issues one faces seems to attract criticism and accusations of indolence.
That has to change; thanks for the reply. Good luck.