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+--- Thread: 32, undiagnosed, in the UK (/thread-1694.html)
32, undiagnosed, in the UK - cupmug - 11-11-2015
Hi there,
I think if I told people I suspect I have an SPD, they would think I was just trying to get attention.
I only started researching this in the past year, and today I've gone back to it again, reading up online. It does help me to make sense of some things! I often feel overwhelmed by noise, by visuals, and by people talking to me, especially if they're giving me instructions or telling me something I need to act on, or remember. This means I can feel really cornered and overwhelmed, and it crosses over into emotional stuff and other areas of life, because it makes me want to curl up in a ball and avoid everything.
I also have recurring depression, and a reasonably mild, but chronic, physical illness to deal with. I'm low in energy, I love going to bed, and even though I love dancing, hiking and running, I would really have to push myself to do anything physical.
On the plus side, I have often quite an intense, positive reaction to beautiful colours and sounds, and dancing. Sometimes, it can all feel quite lovely and trippy. :) I'm an artist by profession, and this is part of it.
I also work to support other people with disabilities and mental illness.
At the moment, I'm having a hard time. I feel scared and overwhelmed, often, these days.
But I'm interested by this whole SPD thing, and I really want to find out more, and devise ways to help myself with the sensory aspects of my everyday life.
I've been reading through symptoms lists, and making my own lists of what I find comforting or energising, and what I find uncomfortable. I'm hoping to research more, and try out some ideas for my own 'sensory diet'. I don't have the money to pay for occupational therapy, but hopefully I can start to help myself.
RE: 32, undiagnosed, in the UK - fluffingaround - 12-09-2015
Hello,
Dunno if this is helpful, but I know where you are to, not feeling like you know where to look for help/not enough money to look for help outside the system. Having stumbled upon help within the system, it is the biggest relief in the world ever, when I never had had any inkling that there was such help within the NHS, even though I have been to the doc several times over the years asking if there was any further help I could find. It wasn't til I landed up in a bit of a crisis that I was able to find the help, and I wish I had known about how it worked and pushed harder years ago. Might have saved wasting a large part of my prime years, mores the pity. So I just thought I'd say, it might be worth talking to your GP about it, even if you do not attack it directly, but maybe go about your tiredness, underline how debilitating it is, and ask your Dr if there is a possibility to be referred to an OT. They'll probably want to go through the whole 'you are probably depressed, take the pills' palaver, but if you go through the process and don't give up, there are ways through to other things eventually.
I have spent many years wishing that I have money to afford this or that in my search for answers to how I can make life better for myself, and doing what I can with the knowledge I can pick up myself in absence of the money to consult professionals. But finally, in a roundabout way I landed up with an OT in the NHS and she is the most help I could ever have hoped for, as well as the fact that, being NHS, it is greatly reassuring to feel that they are genuinely trying to help cos there is no financial interaction, I have come across too many people who try to persuade you that you have this or that and that they can help you with this or that so you keep coming back and paying them.
I landed up where I'm to with an OT and sensory integration therapy on the NHS in a massively roundabout way, so I thought I'd tell you a bit about how I got there, 'cos I kind of got here 'by mistake' knowing how arcane the system can be to get into I dunno whether you can get there directly, but it is worth keeping going back to the system til you find your way to what you want, when you find the right people.
I always have a struggle with mental and physical tiredness. It seems maybe now that this tiredness I have always struggled with is due to the SPD but also it does get a lot worse when I get bouts of depression, which also saps my will to fight through it, which is unhelpful, given that it takes a lot of willpower to keep fighting the tiredness as it is. But I have never got on with anti-deps, they have if anything made things worse, at the least they have done bugger all anyway. I also have a struggle organising myself and concentrating, for which I was diagnosed ADD as a teenager, so insomuch as these probs get worse when I feel the 'depression' coming on I went as a last resort to ask for some ADD medication. I have since discovered that these are also symptoms of depression. I also in the past have just been given the anti-depressants, taken them, thought 'this doesn't seem to change much,' carried on taking them for good measure and eventually tailed them off. GP never particularly followed it up, and all I thought was that that was that really, didn't work much, had to cope on my own. Had I gone back to the doc and said I was still struggling, and KEPT going back, I think I might have been referred on from the GP earlier. Annoyingly, you have to keep trying and trying and trying til you get anything out the system. (British...: one doesn't like to make a fuss, like you said in your post as not wanting to come across as an attention seeker. An aspect of our national psyke that I am generally very proud of, but does need getting past from time to time, as with NHS unfortunately) As it was, to be prescribed ADD medication, they have to refer you to a psychiatrist anyway, who ticked the boxes and sent me to a prescribing nurse, who took following me up very seriously and has been very helpful. So thats how I got into the system, eventually. When I became massively depressed again, and they put me on anti-depressants and again they maybe helped a bit but in the grand scheme of things I still felt royally buggered.
It was after I had been back on anti-depressants and was a bit better but still feeling rotten, and I thought, 'well I suppose if I am not sorted by anti-depressants then I suppose I must just be feeling sorry for myself a bit and I need to come to the point where I just need to pull myself together" - except that I am so so so fed up of constantly feeling like I have to pick myself up moment to moment constantly - I rather sort of said to the social worker who was my 'care co-ordinator,' (who had tried to get me this and that therapy but nothing had really been suitable) and the prescribing nurse, "thanks guys I know you have done your best to find ways to help me, I've just got to carry on somehow," when they said to me, 'we don't want to stop looking for ways to help you til you are really well.' Because one consistent feature of my problems was always tiredness, that's why my social worker got me an appointment with an occupational therapist, (who I later discovered is currently doing an MA in sensory integration at the moment so I guess particularly switched on to those sort of things, which was lucky) and she straight away noticed loads of random little things that I wouldn't even have noticed I do.
Few more thoughts, in case it is helpful!
"I think if I told people I suspect I have an SPD, they would think I was just trying to get attention"
...I wouldn't worry about that if you are talking to a mental health professional and you are only trying to find solutions to things that are a problem for you. I have always had a great concern not to be self-pitying anyway, I know how difficult it is to actually say something feels wrong without feeling like a bit of a twat, which is one of the reasons that the tiredness thing, being a more tangible feeling thing, is Otherwise one can also get into the annoying catch-22 of trying to explain that you are finding things a problem, and people saying your problem is that you are negative, need more confidence in yourself etc... no, its not cos I see it as a problem, its cos it IS an effing problem, aarrrggghhh - not making problems on purpose, trying desperately to avoid the effing things, if I could positive think the whole thing away, I'd've done it years ago, trust me I have tried!
"I often feel overwhelmed ...by people talking to me, especially if they're giving me instructions or telling me something I need to act on, or remember"
.... I get that a lot, I don't feel overwhelmed as such but I zone out a lot and have to fill in gaps where I have zoned out and don't want an ear-ful for having not listened, or to seem annoying or incompetent for having to to ask people to repeat what they have just said.
"On the plus side, I have often quite an intense, positive reaction to beautiful colours and sounds, and dancing. Sometimes, it can all feel quite lovely and trippy.... "
....just be aware of what you say to whom, similar sort of explanations to a prescribing nurse was a contributing factor that flagged up to her the idea that I had bipolar 2. Possibly I do, possibly I don't, it is a moot point for various reasons, and possibly it is not the end of the world to be diagnosed as such, (but the meds involved didn't help much in the grand scheme of things), just to warn you of the stuff that what one says can open up channels one might not have anticipated and it can be a bit of a can of worms!
Good luck