Que sera sera

[niall451]

Hi everyone,

stayed away for a week as i got fed up of moaning had an injection last week, very little improvement,the tramadol do work pretty well for the resting pain, still working but have asked my employer if i can drop to 30 hours a week as its too much for me fingers crossed but doubtful, got my gp tomorrow with my wife to help me reiterate my lack of sleep and pain issues, not one mention of an occupational therapist other physiotherapist i feel like image talking to myself when i explain my issues with trying to work,its generally met with a muted nod,important so bloody sick of this crap still no mix not heard anything i feel like image in a blackhole of healthcare in leicestershire i think i need real help but small embarrassed to ask and i just muddle along hoping someone will notice and take pity on me and yes i do feel sorry for myself as the ignoramuses who think they know what im going through,don't! And breathe

[sylvi]

Niall, are you depressed,it sounds like it from your blog.Depression is also part of our disease sadly. When you go to the drs with your wife,biik a double appointment and tell them as well as all your pains you are very depressed and so very down. Don't be put off by more drugs,if it helps thats all that matters. They might issue you with amytryptaline and these you take at night. They will help you sleep as well as acting as a anti-depressant.

We all have spells when we do nothing but moan,but don't let it stop you moaning as sometimes someone might be able to advise you on something you hadn't thought about and it will be like a light switch going on. sylvi.x

[bub124]

Niall, Sylvi is so right. Being depressed is all part and parcel of this. When you're in lots of pain and no-one seems to be listening you're bound to get down about it and I'm sure you feel like you're beating your head against a brick wall.

I've been on anti-depressants for many years and keep taking them always - even when I feel well - as I've got enough to cope with and I need all my energy to get through each day. Sadly, our lives are ruled by meds. That's just a fact of life. When it's under control you can think about which ones you'd rather not take then but, for now, just take whatever they give you.

I don't know if it will help but with painkillers, like my anti-ds I take them religiously whether I'm in significant pain or not as I like to keep it under control and if I wait until I'm in real pain, they aren't as effective. Not the right thing for lots of people I know but it works for me and I make sure that I only take the recommended dose.

And as Sylvi also says, don't stop moaning. We're always hear to listen and someone might give you some advice that you hadn't though of before and may help you.

Take care xxx

[allanah]

Hiya Niall

Well no wonder you are sick to the back teeth. I feels like you are banging your head against a brick wall! I think maybe if you go back to the Doc and actually ask and sort of demand for physio, ot referrals, as it doesnt seem as though they recognized this is what you want.

You have a chronic long term illness and you need help and support and in general the doc not to be an ignoramus and to start taking you a bit more seriously i think. If you feel down I'm not surprised as this illness does make you get fed up and down at times. Why dont you phone the Rheumy helpline or the Nras helpline and talk to them as they really really helped me in the first part of my illness as they DID understand and DID know about the disease and dont mind if you are moaning (as none of us do either, i spent a lot of time moaning on here and probably will keep doing that!)

Dont stay away from the site as its so good to get advice from others who know what you are going through to a certain degree.

Have you got a union for your work cos my union were fantastic help to me when I wanted to reduce hours and the when I was laid off due to ill health as they were on my side and had all the proper advice, instead of going "cap in hand" to my boss they read them my rights as a person with disabilty and tiredness and pain and they listened more to them than to me!

Talking of the pain I'm glad the tramadol helps but as bub says u have to remember to take it regularly and if it isnt helping enough go back and get stronger stuff!

So keep talking to us all wont you cos we are thinking of you and chat to NRAS they are great!

hugs Axx

[Hidden]

Hi there,

I think saying that you need real help is quite brave of you, it's not something you've said loud & clear before here, as far as I know. Last time I saw the Rheumy there was one main thing I wanted him to focus on & my husband came with me to make sure we got what we wanted. We planned it too, the night before i.e. decided exactly what to say. And it worked. I hope your GP sits up and takes notice this time.

You don't seem like a moaner at all, it is obvious that you have got a lot on your plate & all you want is to find a way through. You've got absolutely nothing to be embarrassed about although, to be honest, it sounds as if your employer has.

I can understand you feeling as if someone should have noticed because they should have done! But it doesn't seem to happen like that anymore. You have to ask for help. And keep asking if necessary. Hopefully NRAS will have some suggestions for where you go from here.

Good luck with work & GP,

Christina

[niall451]

Thanks for all the wishes and kind words guys and gals, it really moves me , I feel so fragile both mentally and physically, fingers crossed I just feel so bewildered and confused and feel like I am some sort of expregiment whose only info is gleaned by eavesdropping! WELL NOT TODAY!

[Hidden in reply to niall451]

You've got a lot of people behind you. Keep posting & keep exploring every avenue until things improve for you,

Best wishes,

Christina