OCD Action

Truddles
Member

I'm having a really bad day today and I'm really stressed, my blood sugar keeps dropping and so I passed out whilst taking the washing from the washing machine to the drier, hit my nose as I fell and have bled all over the tops and trousers and so I have had to put it back in the machine. I've still got to do another load when that finishes - I can't not do that load as it's wet towels etc and they'll start to smell if I leave them. Plus I need some of the other items in that load. Heaven alone knows what time I'll get to bed tonight.

My ankle is killing me and my legs are so swollen that I can barely get my trousers on and now my wrist is swollen, painful and difficult to move.

I'm doing my best but it seems it's just not good enough. I never seem to catch up with the washing and I never get a chance to truly relax and do what I want to do. I just want it all to stop as physically I can't cope with the demands that the OCD is making and yet without help I don't seem to be able to stop.

Dealing with the OCD would be so much easier if I didn't keep passing out because of the epilepsy and the hypos, if I didn't keep having absence seizures, if I wasn't in so much pain and if I could see properly. I'm doing really well outside of the flat but it's indoors that I'm really struggling. I've made some improvement but have got stuck and on days like today when the epilepsy and blood sugar are playing up my OCD deteriorates as I become so unsure of myself.

I can't get CBT, I get about four sessions before they give up even though I was responding to it, citing the epilepsy and hypos as the excuse for not continuing as they complicate the issue. I can't get medication because of the epilepsy. So I can't get the OCD treated because of the physical conditions and they won't treat the multiple physical conditions (some of which are serious) because of the OCD. They're still continuing to pass me from one Consultant to the next without anyone doing anything, in the meantime my health is rapidly deteriorating.

I'm frightened, I'm rapidly getting to the point where I won't be able to do certain things because of the physical conditions, (I'm already having to use a crutch, it should be two but I can only use one as my shoulder is still healing from falling down the stairs during a seizure) and then how will I manage?

I have a Care Coordinator who won't listen and on the rare occasion that he does listen when I ask him something he always claims that it's not within his remit. Consequently the Team are going to discharge me, which puts me in a very difficult position.

I still after more than two years have no cooking facilities because the housing association won't repair the kitchen floor or do any of the other repairs and now I can't access bathing facilities because if I do manage to get into the bath to use the shower I then can't get out again because of my ankle etc.

Sorry for the rant but I'm really depressed and days like this don't help.

Sun Jul 31 2011 15:45:29 #
blueboy
Member

Hi Truddles... sorry to hear of all your problems...i dont have exactly your issues ...but i do know how it feels to have multiple things going on at once...for instance my washing machine broke...some weeks ago... so i cant afford to get it fixed yet and need to hand wash..do you have friends? i dont ..here, so that makes my ocd worse... when i have a friend i feel lighter...sounds like you need more help than you get... infact sounds like you are getting virtualy no help!perhap[s you need bring in advocacy... from here or a thing called icas... i have used in the past...dont know why the housing is not repairing your floor...is it so bad that you cant cook in there?
just wanted to say... thinking of you..and hope that even one thing starts becoming more posotive... because you can build on that..PAUL

Sun Jul 31 2011 15:55:36 #
Truddles
Member

Thank you Paul.
The floor is collapsing and has been for sometime, it broke the cooker and it's not safe to have another until they repair the floor.

Why haven't they done the many repairs? Because like a lot of ignorant people they still equate epilepsy with having a low IQ and so think that they can get away with not doing anything. I find it frustrating to be judged this way as I am certainly not unintelligent, far from it. But because of the type of epilepsy that I have when it's uncontrolled I can get very tearful and find it difficult to stand up for myself as I miss out parts of the conversation and so especially on the phone things don't always make sense to me. Now they have the added excuse for not doing the repairs - that is the OCD.

I am trying to be positive but it's not easy given my deteriorating physical health and my living conditions. But one thing I do know I'll not stop fighting for my rights with either the housing association or the CMHT. I've been treated deplorably by both and no doubt they do the same to others.

Sun Jul 31 2011 16:23:53 #
Pretzel
Member

It sounds like you are having a really bad time

It's awful that they won't do the repairs on your flat and I don't know what to say to help you but I just wanted to post and say hang in there and I'm sure it will get better.

You sound like a fighter so today must just be a bad day and I really hope you feel better soon.

Sun Jul 31 2011 16:30:17 #
Allison
Member

Sorry to hear you're having a bad day.I have read many of your comments to other peoples problems and you always come across as being very intelligent and strong. Instead of ringing the Housing Assosication couldn't you send them a letter as then you wouldnot forget things and as I say your posts show that you are highly intelligent. You need to tell them that they are not providing you with basic living standards and you will contact the citizens advice bureau or your local MP as it is deteremental to your health.
It is difficult anyway when we struggle to cope with the day to day things but when we have to fight for our human rights it does make us wonder where on earth we are going to get the strength from to fight it all.
Pretzel says you sound like a fighter and I think that also. Hopefully tomorrow will be kinder to you. Take care.

Sun Jul 31 2011 20:05:11 #
Truddles
Member

Thank you Pretzel and Allison,

I've tried all usual - phone calls, letters etc but over the years have just been ignored. I could tolerate it just, that was until my OCD deteriorated to the point that I had a breakdown. I have asked all the usual people to help and they too just ignored me, my Care Coordinator was supposed to contact them but his idea of contact was to make half a dozen phone calls leaving messages on their voicemail and when no one got back to him he informed me that he'd done all that he could and that I was on my own. Luckily the psychologist that I'm now seeing has stepped in having witnessed first hand the way that the team treat me and she offered to help instead. I drafted a letter and she has helped me to tweak it in order to force home the point that my living conditions are detrimental to my health and well being, I also copied it to my MP and local councillor. Hopefully it should elicit a response other than to say that they've received it.

I wouldn't mind but the OT that I had last year contacted them and received a reply saying that I'd refused the workmen access. She knew full well that I hadn't that they just hadn't bothered to turn up for any of the appointments that had been arranged and instead of getting back to either them or me she just filed the letter and without telling me about it discharged me.

I am in unsuitable accommodation for my physical needs but can't contemplate moving whilst my OCD is so bad and the OT won't do anything to help with appropriate adaptions or aids to make coping a little easier.

If I don't feed the cat etc I can be prosecuted and yet no one is held accountable for the state that I'm in. It would seem that it's acceptable to leave me without cooking facilities, with no access to bathing facilities and outstanding repairs that have confined me to one room as the others can't be used.

Me thinks they're taking the ****

Sun Jul 31 2011 21:17:24 #
blueboy
Member

do you just buy take-aways?

Sun Jul 31 2011 21:52:38 #
Truddles
Member

Who do you think I am - Rockefeller?

Seriously I haven't had a take away for more than 2½ years. I have to survive on ready meals and anything else that I can think of that doesn't require cooking Works wonders for the diabetes - I think not

Sun Jul 31 2011 23:15:19 #
Allison
Member

I really feel for you as up until two year ago I lived in an area and house which I was forced to live in after going through a very nasty divorce.~There was terrible damp, I couldnot open any of the windows as they were rotten and then to top it off a squirrel got into the loft as we lived opposite some woods. I was hysterical and had to get my brother in law to temporarily fix the hole in the roof. It took the council nearly two month to fix it properly so I was terrified they would get in again.I contacted my local councillor and then my local MP which seemed to do the trick. Since then I've moved to a brand new Housing Association House who are excellent at doing repairs. My problem however is letting anyone in the house as I worry they are contaminated. My teenage son and daughter were brilliant in helping with the move as that was a very stressful time and my ocd was bad.
I know it feels like no one is listening and I used to feel I'd be known as the crazy squirrel woman but the only way to get things done is by keep complaining.I used to work in Housing twenty odd years ago and I know the person who makes the most fuss usually gets listened to in the end.
Keep fighting and keep smiling

Mon Aug 1 2011 0:02:31 #
Unregistered

Hi Truddles

Hope you are feeling a bit better soon, sounds like a really hard situation you are in bless you. Just try to keep yourself as positive as you can, easy to say I know! Do you have friends/family around to keep your spirits up a bit? Must all be really hard.

Mon Aug 1 2011 8:59:19 #
BT
Member

Truddles, I’m really sorry you are having such a dreadful time.

A friend of mine is also diabetic and she exists on raw food only and seems very healthy. I’m not for one moment suggesting your lack of cooking facilities etc is acceptable, because it’s not, it’s disgraceful, but I wondered if a different diet from ready meals might help.

Mon Aug 1 2011 12:08:34 #
Allison
Member

Hope you are feeling a little better today.

Mon Aug 1 2011 22:14:27 #
Truddles
Member

Thanks everyone,

I had a WFD (washing free day ) today and went to see my elderly aunt. It was so hot that we went to the beach where there was a nice cool sea breeze consequently I feel little calmer today. Forgot to take my bucket and spade though, mind you wouldn't of been much use as it was a shingle beach

It's far too hot here, should have brought the sea breeze home with me

Mon Aug 1 2011 22:38:12 #
aishah
Member

Hi Trudy,

Sorry things are still bad for you, I just can't believe that nothing has been done to help you after all this time.

I will call you soon, glad you had a nice day with your Aunt.

Take care till then

Bridget
xx

Tue Aug 2 2011 0:44:12 #
David
Member

HiTruddles

I've being reading this thread and was struck by your comment regarding CBT that you 'get about four sessions' and its is stopped because of the epilesy and the hypos. I think the problem is that medicine is delivered in parcels with the patient going to see an expert in a discrete area of expertise and there is very little interaction between the specialists. The GP gets sets of reports about each condition and tends to treat one condition at a time. I think this is because there is a lack of research into people suffering from a range of illnesses. I am also a diabetic and know from the support group which I attend that many of us suffer from a variety of illnesses. In my borough the local NHS runs a course called 'expert patient programme' which I found to be useful in terms of education, how to be more assertive and support.Is there one in your borough? But I was surprised about the CBT being stopped - I thought the whole point of it was to gain greater mastery of your mind with greater knowledge of irrational thought patterns. There is mindfulness CBT which apparently uses some non religious meditative devices. I wonder if this would help? Have you had a convincing explanation for the stopping of the CBT?

Tue Aug 2 2011 18:28:19 #
Wombat140
Member

Glad to hear you got a day off! Maybe you could go away with someone for a few days, get away from the washing and eat real food? Then you'd be in better shape to go and throw things at the consultants

Good luck with the Housing Association. If they don't listen to your letter, they'll listen to your MP!

Best wishes
Wombat

Sat Aug 6 2011 20:55:19 #