Don't feel I'm winning

[Sue J]

I'm totally exhausted, urine infection quite aggressive, I just can't fight any infection any more. Saw GP told him I can't go on like this, this is killing me. If I was up to looking after myself I should have got him in, but don't like being ill or calling Dr in, but I should have as it's just allowed the infection to advance. I don't want a lot of help but just a little would be nice. SS wont help as I'm under MH , but latter don't do anything, so I've asked GP to get them to discharge me so that he can refer me to SS. Can't deal with anything for any length of time and am just going downhill - I feel like a very old lady, but I'm not. This isn't psychological - but very real physical symptoms. Normally respond and feel much better after 2 doses of antibiotic, have had 5 now and improvement is very slow. Don't want to do much at all really, isolation just gets worse. The stress of not being able to deal with your own affairs and inability to negotiate benefit system is a nightmare. Sorry, I just feel like a misery again - not good at being ill.

 

[Grannie G]

I hope this is a 'blip' Sue, because you have been doing so well.

It doesn't look as though you are getting the medical support you need though. You might be on a downer because of the infection but it really does seem you need better support.

Do you think it would help to write your own diary to show your doctors. They might take more notice of the written word.

 

[Sue J]

Thanks Sylvia. I agree with all you say but they don't realize how bad this is. I have been unable to keep a diary consistently since this all began as my sense of time is all over the shop. Regular severe migraine literally flattens me, when I 'come too' I try and work out what day it is and pick up some pieces of things I can't do when I'm 'out of it'. I wish I had no awareness of this. My GP is very good but I'm quite 'normal' when I see him and I guess it's hard for him to really get the picture. I cannot describe how devastating all this is. The mental hallucinations and disturbances are not there anymore thankfully but I just wish I had some structure back to my life even without working. Whilst I had those disturbances though I was unable to communicate the physical things because the former were too terrifying, but when you're in it you believe others can see exactly what the problem is. I just think I need a proper assessment of my needs without pressure of seeing a psychiatrist. Thanks for reading and replying. I hope things with Dhiren are not too bad.

 

[Grannie G]

Sue Dhiren is fine thank you.

I don`t want to patronise but haven`t you someone who can get you to the doctor when things are bad. I know exactly how doctors can be mislead by not seeing people at their worst. Could you arrange for someone to read the signs and try to get you help there and then.

 

[Sue J]

Sylvia, you're not patronizing. Someone has taken me in the past and they've seen me when I'm pretty bad mental health services and GP. My GP I think has looked to MH team but I'm afraid to say services here are terrible and my GP knows it too so he's stuck. When they want to classify you as mentally ill but don't give you ongoing support it doesn't encourage you to keep going back to them. A friend came and took me to a benefits medical which really helped. Most of them live further afield. I've been a bit isolated through other caring responsibilities for several years prior to this all starting. My close friends locally do help and support me when they can alongside their own family responsibilites which aren't all easy either. They also I think it find it hard to take in what how this has changed me because my previous capbilities seem to have disappeared. Probably not explaining well but it's how it seems to me. Thank you for responding. See this week what the GP manages to get in motion.

 

[sistermillicent]

I just want to send you get well wishes Sue, I agree with what Sylvia writes and think that if you are feeling really down then you would naturally think it is too much to ask someone to do as she suggests and take you to the GP.

It isn't too much to ask of someone and I imagine they might be very glad to do this for you,

Sending love and all the positive get well vibes I can muster

Pippa x

 

[Grannie G]

It is very hard to ask for help for yourself , especially when you are feeling bad. I was once at my lowest during caring at home and could have let everything pass by. A good friend realized this and stepped in.
Sue you really do need to get some quality help.
Why not print this Thread off and take it to your doctor.

 

[Sue J]

Thank you Pippa and Sylvia. I know I need some good quality care, but any would help really, then I might regain some strength.

Today feel the antibiotics are helping but I am just so weak. Day in day out not having strength to dress is just not good.

I'll see if I can get a freind to come to GP when blood results are due.

Thanks again ofr your support.

 

[Izzy]

Sue, I'm so sorry that things are so bad for you. Can you not get a SW assessment? My husband had one even though he was being seen a CPN. We haven't seen a CPN for years but the SW turned up trumps - I know we're lucky in this respect. I do so hope you get some help. Take care. x

 

[Sue J]

Thank you Izzy, I have tried believe me and I'm hoping that's what GP can arrange, I need someone with a bit of insight and commonsense, but as I feel I've lost the latter it makes it difficult having the former! A glimmer of help would give me a glimmer of hope that things can improve.

 

[Izzy]

Will be thinking of you. x

 

[Sue J]

Thank you

 

[keane]

Hi Sue

Really sorry to hear about your difficulties. I don't understand why social services are not involved with you. They should be despite the fact you are under the Mental Health Team.

Please let us know how you got on with your GP. Does the Az Society know if their are any advocacy services in your area?

Best Wishes

Keane x

 

[Sue J]

Hi Keane

Thanks for post. I don't understand it either - local AZ said they can't do anything without a diagnosis.

Thankfully I feel a bit better having had anitbiotics, but very weak. I will post what happens with GP. He's very patient and kind but how do you communicate 'dementia' - for me it's like being in distress most of the time and made worse because people don't realize because they can't see it - and they somehow wont take your word for it because some of what comes out sounds 'rambling'

Thanks to all on here, you do understand all in your different ways because of your own experiences and it does help to be able to post. I fluctuate between being in denial and trying to accept the realities.

Thanks again
Sue
x

 

[Sue J]

Different GP came out yesterday - never met him before, he was patient and kind and listened but all he could say was he would write to SS and 'try' but initimated it was very difficult to get SS help - I know I've been trying for months. He also said he would chase letter other GP sent to cpn. Not good today, managed a couple of drinks but not up to a lot. Been on TP most of the day but it's like consciousness keeps coming and going - after really 2 day bad migraine. If they gave me a bit of help a couple of hours a week it would help me a bit to cope, brain malfunction is not good Hopefully this will pass and will pick up usually do but it's a bit less each time.

 

[sistermillicent]

Dear Sue, a migraine will certainly knock the stuffing out of you, I imagine you must be feeling very weak.

I really hope that between the TP community we can come up with something that will get you the help you need and deserve. I can only suggest that you see your GP every single time you feel at all unwell, don't "be good" and manage without, keep yourself in his sight so that he does not forget about you.

Keep posting on this thread Sue, I am very interested to know how you get on.

Pippa x

 

[Sue J]

Thanks Pippa, I've never called them out before and they really have no idea how the migraines affect me. Over 50 per cent of my time I'm either in pain (extreme) with it or am coping with the after effects - it's been a worsening cycle for many years and is now flattening me.

Tahnks for yur concern and encouragemnt