Not sure where to post - but need advice on if I can get help

[Weegle]

I've spent most of today blubbing in tears and can't seem to stop. Sparked off by the fact that 18 months after getting Ankylosing Spondylitis (bit like Rheumatoid Arthritis, severe back pain/pelvic pain and fatigue), the drugs I am now taking lower my immunity so I got a cold over two weeks ago which has turned in to sinusitis, and I woke up this morning in more pain in my pelvis and I feel like it's the straw that's broken the camel's back and I just simply can't cope anymore.

I have a son who is about to turn 1 and he's been my motivation for "mind over matter" up till now. But today I haven't been able to lift him the pain has been so bad. So we have literally had to camp out in the lounge and just get by. And I think if this is how much pain I can be in whilst taking the strongest drugs they can offer me, what does my (and my son's) future look like?

Social Services won't help because I can't register disabled (as I physically CAN care for myself it's just agony to do so, and they don't seem to take in to account my role as a mother). We aren't in a Homestart area as this sounds ideal. I feel like I'm getting depressed on top of everything because I feel like I can't even cope with my own child.

And I just don't know where to turn next. The GP advises me to get an au pair but we looked at the finances and we can't afford it. The consultant keeps telling me to be patient and that it could take 2 years to get my drugs sorted - I can't wait 2 more years, I can't cope with any more pain
My husband is fantastic but he obviously has to go to work. I just don't know what to do and I don't understand how I can be in so much pain all the time and so tired all the time and not able to access some sort of help. And I wonder if it's just because I don't know where to look?

Does anyone have any suggestions as to what I can try next? At least if I'm looking in to things I feel like I'm positively trying to help myself.

Sorry this is so long!

oh that sounds awful, you poor thing. i think twiglett's dh has this illness, hopefully she'll see this & have some good advice.

i was given pain killers for joint pain (hips/knees/fingers/shoulders) they made me feel really depressed so i stoped taking them, i know it can be painfull the specialist told me he doesnt think iv got rheumatoid arthiritus an just gave me stonger painkillers. my dad has arthiritus he told me not to take anything and know what makes you bad im still finding it dificult but am learning

Thanks hoxtonchick and elsieanjoanne.

I'm not sure I could come off the drugs. They are what keep me sane! Without them I get so bad I can't even walk so don't see that as an option really. I am concerned that one of them has a side effect of depression but I truly feel it is the circumstances I'm in that are making me so down, not the chemicals although I guess they could contribute. I feel powerless and like I've got a life sentence of pain when all I want to be doing is focusing on my baby and enabling him to have a happy childhood.

Also there doesn't seem to be anything in particular which makes it worse like with osteo-arthritis I know people say food, weather etc. This isn't like that. Sometimes it's ok and under vague control (although always painful), sometimes it's terrible (like today). There is no rhyme or reason as to what makes today a bad day and a few week's ago "good".

see another gp and have you got a specialist nurse as they are often a bit more helpful than consultants, how about talking to your health visitor as she may have some other ideas if there are any things akin to homestart etc,
have you got any friends nearby who are home in the day as just having someone to have a cup of tea and do the odd nappy might help out a bit. I would help if you are near me(west yorks)
hope you feel better soon

Thanks catrionasmum, that's very kind but it would be a long commute I'm in Kent!

I don't have a specialist nurse - how do I find out about this? I have thought about changing GP but can't change practice (only one in the town) and don't want bad feeling.

My HV has been lovely but fairly ineffectual. She referred me to SS but they won't help. She has referred me to a local charity but they have a 6 month waiting list before they can even assess me!

My friend's have been wonderful. A month ago when I couldn't walk for 3 days they set up a rota and cared for my son but I hate feeling dependent on them. And this has gone on so long now I feel like it's all a one way street with me and don't want my friends to feel like that.

I feel so exasperated because I really feel like I've exhausted every avenue. I'm not a very pushy person and wonder if that's where I'm going wrong - that I'm not making enough of a song and dance, but that's just not me. I'd rather shut my front door and do my crying behind it, if that makes sense. But I therefore seem to have given everyone the opinion that I'm coping when I'm not.

oh and I'm just filling in the Disability Living Allowance form. Does anyone know if I'm likely to get this? Won't hurt to fill it in. And if I did get it I could use the money to get some help e.g. and au pair.

Sod bad feeling with the GP Weegle, you need to make more of a fuss to get some help. All the while they think you're coping you won't get any. You need to do a bit of research on the web, find out what's near you and then go back to the GP armed with some info and demand some help. I'm in Kent, want me to come with you and bang on the door?

Just a little advice for you.When filling in the DLA form put what you are like on your worst days.e.g.if some days you can't get up the stairs on your own put that down.and when putting how long it takes to get ready for bed,include walking up stairs having a wash getting changed ect,not just the climbing into bed part.Good luck.

sorry to hear about this Weegle...
with regard o diasbility living allowance, you should qualify for this but you may need some help in filling out the form, as it appears to be designed to make it as difficult as possible to actually qualify.. My mum applied for this recently and was helped to fill in the form by a charity called DIG (disablement Income Group ?) in Edinburgh. They stressed that when filling out the form put down the information based on your worst possible day. They were a great help and mum got the money that she needed to get extra help. I don't know where you are in the country or whether DIG are a national organistation but I would imagine that there are other people out there who would be able to help with the forms.
I'll try to find you a link for DIG...they should certainly be able to put you in touch with organisations in your area that can help.

Good Luck

Weegle, You should be eligible for DLA, but you have to fill the form in to YOUR advantage.

Read thru' the form first, don't write in anything.

Then imagine the worst day/week you have had, when you haven't been able to do things for yourself (like the time you couldn't walk).

As you go thru' the form answer every question with a view to that worst time. If it says 'do you need help to go to the toilet?' and you needed help when you were at your worst, then the answer is YES. If it asks how many times you need help, answer the num,ber of times you needed it on that worst day.

If it says 'do you need help to get medication in the night?' and your dh had to get your painkillers on that worst night, then the answer is 'YES'.

Please don't be proud, don't try to be brave and say you can manage if there are some days when you can't.

You will be asked to get someone who knows you to fill in there views (it can be your dh or a friend). Tell them to imagine your worst day and put that on the form.

If you do get awarded DLA, go back to social services. You may become eligible for a Direct Payment award, which I get. this is a payment from social services so you can employ someone (or several) to help you.

Good luck, ask if you need any more info.

Link for DIG Scotland

wow thanks everyone lots of advice! I'm very grateful and feel a bit more positive. Have just sent DH back to the printer to re-print the DLA form so I can fill it in as if it's my worst time. I was just putting that in the extra info.

I feel a bit fraudulent though - what happens if someone sees me on a good day taking my DS swimming? I get worried about these things!

weegle...no-one will know that you're claiming it if you don;t tell them, and my mum can walk around ASDA on a good day, but it doesn't mean she doesn't need her wheelchair the rest of the time. don't worry about it!

Another bit of advice...keep a copy of the form incase they phone you up...I believe they can do that prior to OKing the application!

Weegle - good info on claiming DLA here

They are tough forms to fill in as someone else mentioned further down. Think of your worst day and use that as an example. Answer all the questions even if it means repeating yourself. Don't say 'see Q2' because they just won't look back, repeat the information.

Sorry you're having such a tough time.

great link MaryHinge.

your consultant will know about a specialist nurse as its his/her team that they come under , the arthritis reaearch council might be able to help too.
don't forget GPs are just people and you can't get on and have a good relationship with everyone and if they are offended who cares!
don't feel guilty about your friends helping just think about what you would do if one of them was ill- i bet you offer to do anything to help- thats what friends are for.
disability rights groups are also helpful if you have to appeal- the citizens advice bureau can often point you in the right direction but your gp should be able to suggest a starting point.good luck hope you are having a better day

Weegle, there is nothing fraudulent about it. Sometimes you are worse and need more help than other times, me too, and in my case if I wear myself out then I get worse, so need more and more help.

They can't pay you DLA only for the times you are at your worst, it just can't work that way. So you hacve to claim it the way I described.

If it helps at all, I was taught how to fill in the form by a "benefits rights advisor" who was sent to me by social services. So that is official information.

Great, thank you so much everyone. I'm really grateful for the support and advice.

That link MaryH looks very helpful. I got too exhasuted trying to get my head round the form last night so I'll print off that info and go through it with DH tonight and try again.

It's such a mindfield as to where to look for help - it seems just when you haven't got any energy you have to fight to see what's even out there.

If you can get a local advisor to help you fill it in I would recommend it. They help people all the time and know just how to word things correctly to the greatest effect.

It's just shit that the government has made it so difficult to actually get the money that you are entitled to, but I suppose that's to try and prevent fraudulent claims.

Good Luck and I hope you get some repsite from your symptoms soon. Shame on your GP as well for being less than supportive. My mum's GP basically asked her what he needed to fill in on the form to help her get the award.