We all need to be heard for a little while.

dragonette

Phone call done, Drs app made. Need to call for JSA, and call the council, and the anti poverty charity. Ive absolutely frozen. Hoping a hot shower helps my brain relax too

codemonkey

Ugh, I feel terrible today. Really dizzy and sick and so, so cold. Am considering leaving early and asking to work from home tomorrow.

Stoodles

ESA is a pig. And that's an insult to pigs. I'd rather invite a Gloucester Old Spot for the afternoon than an ESA assessor.

Stoodles

Code - you had such a bad night didn't you ? Do you think you could be getting a bug?

Pyxis

(((((((((Code))))))))))

It's all right to hug - I'm wearing a surgical mask, just in case!

Waves_and_Smiles

Evening all!

I am fighting cluster headaches today, much sniffing of my nasal spray. They are a lot milder than they used to be with medication, though. The annoying thing is it only works for 2 hours and then they come back, which they would do really considering they come in a cluster.

Stoodles, the MPD dissociation is all caught up with the psychosis, both conditions are co-morbid. I have had a lot of specialised therapy for DID so I don't dissociate to my others as much as I used to, plus I am co-concious with them so ones that don't know how to do things tend not to take over anymore. This doesn't mean that part of my memory problems aren't MPD related though, as I still dissociate a lot in terms of derealisation and depersonalisation.The depression psychosis also causes memory lapses so really it is several conditions interacting which we stick under the label psychosis because it's easier. Because my conditions overlap it's pretty impossible to isolate which one is causing which reaction hence my psychiatrist explained the chemical process that occurs, which specific condition is causing it to happen is anyone guess really. Funnily enough when he writes reports for me these days he uses the label "Chronic complex mental health conditions" because neither of us are sure which ones may have improved, become worse or if there are now others such as Bipolar. We have stopped counting, my brain is broken. That'll do.

I loved the cow story and am glad you were all relatively unharmed, including the cow!

Hugs, dragonette. I am so sorry you are having to go through all of this. Hang in there and please do appeal. Don't discount the first mandatory consideration either. When I first applied for DLA my GP told me first they will refuse and then they will reconsider and accept, and that they do it with everyone with mental illness. Somewhat cynically, she told me that she has found they do this in hopes that those that don't feel that bad will give up and only genuine cases will pursue it. She was spot on, initially they said no, then I asked for reconsideration and someone called me and asked a lot of far more direct questions that weren't even on the form which allowed me to go into more detail. Then within a week they granted mid-rate care and low mobility indefinitely.

Hang in their tea, keep your freedom in sight. You will get there.

Go home and cuddle up under a blanket, code. It sounds like you have a virus.

Stoodles

I suppose with multiple diagnoses, pin pointing the source of one symptom is not worthwhile unless there is a very specific treatment. It has to be more about managing things in a practical day to day way, and that is where your approach is positive and inspirational. I imagine living it is a lot more complicated than you make it sound..

Waves_and_Smiles

Aw, thank you Stoodles. It is pretty much as you say and rather than saying "How I feel today is because of <insert condition>" I just tend to figure something chemical has gone wrong and deal with the symptoms as they stand. I have been extremely lucky though, in that I have had 16 years of various therapies and some wonderful psychiatrists and therapists, sadly that doesn't seem to be available to people these days with all the cuts but it is very much what helped me understand what was happening and how I can deal with it.

It isn't the major relapses that cause me problems, as you say it is the day to day things like not being able to make cheese on toast alone that are the frustrating bits. The disparity is so annoying, I could write a complicated post on here clearly explaining the neuro-chemical reactions in a mental health condition and then be unable to make a cup of coffee a minute later, the inconsistencies are the hardest part. Although I think I cope relatively well now it wasn't always that way. For 10 years I was mad as a box of frogs and not coping at all with a lot self-harm, several suicide attempts and frequent hospital stays. Then I decided one day I either give up and remove myself properly or I start really working to deal with this and find out what the likely triggers are and take each day as it comes rather than live in a blind panic that I was raving lunatic who couldn't live an ordinary life.

Now I am pretty much used to it. I still get frustrated and feel like a waste of space at times but I do think I have something to offer even if it's only explaining to others what it's like to live with complex mental health conditions and being living proof that one can live with it. My life isn't lived like other people's and probably won't ever be but I am still here and I still laugh and get excited and have happy times. If one other person who has similar issues can draw hope from than that then as corny as it sounds it is a reason for me to keep going. I like being useful to people.

dragonette

Thank you WaS, I'm hopeful but unsure. I'm planning for the appeal being needed. Sadly I have no diagnosis at all atm, not for what I am sure it's ME/CFS as well as the MH issues.

I'll need to push for that to be diagnosed I think. The push might be a good thing

Waves_and_Smiles

As much as I hate labels in this circumstance they could help you, dragonette. Do you have a sympathetic GP? The chances are you have already been labelled with something on your medical notes, you just need to find out what that is. Write down all of your symptoms in preparation for the appeal, you want to cover how it affects as many aspects of your life as you can.

I don't receive benefit on the basis of my diagnosis as such, it is more on what I cannot do. My memory problems are a big reason as is the fact that I need to be supervised when I go out. The catatonic episodes are another reason because at those times I am a risk to myself and to others if I lash out. The decision is based on what I can't do that constitutes an 'ordinary life', in my DLA claim even the fact that I can't be trusted to run a bath for myself gave me points (that once resulted in an A&E visit when I seemed to have forgotten that you need cold water, too), as did the fact that I can't cook a meal alone without serving lightly grilled oven glove. Break down how your mental health affects the little things that everyone else takes for granted, that is what they are looking for.

At my last assessment my psychiatrist advised I send them a 3 day diary explaining my day in minute detail. The reason I did this is because I am so used to living this way that it doesn't seem out of the ordinary to me anymore. It's little things like WaSp having to check on me after 5 minutes in the bathroom in case I have hurt myself or have become catatonic and the fact that in say, hospital toilets he has to come in or wait outside and I cannot lock the door just in case something happens. Embarrassingly, I take a change of clothes with me when I go out because on far too many occasions I forget to take my jeans down before having a wee! This ticked boxes on the incontinence question although I am not incontinent as such. Or the fact I have a wedge under the front door and bells on the handle because I sleepwalk a lot and try to run outside if I have a nightmare and the struggle of me trying to open a wedged door with tinkling bells wakes WaSp up to take me back to bed. To WaSp and I it's normal life but to an assessor it highlights that I need care and am not able to work, but they are things I would never have thought to include because they are just routine to me. A diary can help you to see where there are problems and adaptations that you otherwise might miss so consider doing that as well if you feel up to it.