please more

hello everyone,

im feeling very low still. my lupus wont ease up on me no matter what I try. im constantly worried about money and have asked CAB and my local council for advice and applying for some help with paying our rent and council tax but we were turned down as my husbands wage is ment to be plenty to live on! we are very carefull of where the money goes and bills and rent are always paid but my husband and I are eating less and less as thiers no money for food. the children get fed of course. what happens if the cars breaks,the washing machine? weve had no heating the last 3 winters as cant afford electricity. I don't have family to ask and my friends deserted me when I became poorly. I can only work part time as lupus has totally changed my life from being a work-a-holic to a pathetic 5 hours a week.

every day is full of pain; my joints grind and hurt, migraines and neasea, blurred vision, brain fog, tripping over nothing, lead legs, rotting teeth (cant afford to go), feeling breathless,fatigued and thin hair just a few things I can think of writing this.(theres more symtoms but got brain fog)

I have asked and asked my GP and my rhuemmy for help but I get told they have worse patients than me and offer me anti-depressants. yes I am depressed but living with this wolf tires me and wears me down especially when its hard to explain to my own family, they get tired of hearing that ive no energy,i cant walk that far, I need to rest......if THEY don't understand WHO will?

I went to work today and the sweat was pouring from my head like a tap,running down my body, I felt gros,this summer has been the worst ever and I don't want this hiddious symptom to continue,ive enough of everything else to cope with. im at the end of my tether,i long to have a day when im "normal" and can be me not this broken shadow, I do try to be positive and put on a brave face. my husband has been diagnosed with oesto-arthritus (soz cant spell) of his lower back due to heavy manual work all his adult life so im doing my best to help him,my son is starting his final years at senior school so he is unaware of things as he shouldn't be burdened at his age.

I did ask for DLA years ago but was seen by a doctor at the nearest DWP centre and was told no as I can dress and feed myself and I can stand for longer than 3 minutes and not to waste their time.we havnt had a holiday for 14 years as money has always been tight as my husband and I are low earners. I did look into college when I was pre-lupus but couldn't afford the fees, I do try to help myself to become a better wage earner.

sorry to moan but I cant take another day like today....lupus is a sh%t to live with x

10 Replies

So Sorry you're feeling like this Caninecrazy but I know exactly how you feel. Not only did I lose my job which I loved (I didn't give it up, I was declared unfit by my employers, before I had my diagnosis) but also lost my Mum my and my brother as well as having this awful illness(I also have an autistic son). I was given antidepressants but what I need is some help and support to deal with the issues my illness has brought, like lack of mobility and loss of self esteem. the sweats are horrendous and make me even more self conscious (I now have to use a stick) than I already am. Ive gone from someone who was a carer for her Mum and I also worked full time and looked after my own family, to being unable to walk at all some days. Every day I think that that is the day I'm going to get better and be able to go back work but every day, I seem to get worse. I'm so glad I found this forum because I find it a great help but I wish there were more support for people like us to access the benefits we should be getting and also there should be more support from our etc in helping us to manage our condition. If a person has an understanding consultant, they are very lucky as I, Like yourself, do not. I wish I could help more but I just wanted you to know that I totally sympathise with your situation. You're not on your own in this xxxxxxxxxxxxxxxxxxxxxxx


I am sorry you are feeling this way, and that your GP and your rummy are not being very helpful to you, I have found of late that I have to be very firm with mine and have recently started counselling, don't know if it is working but its early days now. I also started taking anti depressants after refusing them for so long, but my social life has gone down to nothing and I was so tired of feeling low and depressed that I was willing to try any thing.

Send me your email address and I will send you the info about the PIP (I am happy to forward this to any one that wants it). I'm scared I am going to be turned down but it is worth a try. I have also applied to my borough for a disabled parking permit for which I have an appointment for an assessment next week and a freedom travel pass (which will hopefully save me money on petrol). it may be worth looking into these also.


Hi, sorry to sound silly; but what is PIP please?

Thank you.



"Personal Independence Payment (PIP) helps with some of the extra costs caused by long-term ill-health or a disability if you’re aged 16 to 64.

You could get between £21 to £134.40 a week to help with the extra costs caused by your condition. How much you get is not based on your condition, but how your condition affects you.

You’ll need an assessment to work out the level of help you get. Your award will be regularly reassessed to make sure you’re getting the right support."

I was told that its wort applying as it is not means tested.

I sent off my form last week and when i called to find out how long it will take to process they said it takes 10 weeks!!!

Oh well cross your fingers for me guys


the system is all wrong.there are people out there who are in receipt of highest rate of dla fro both care and mobility who can stand fro an hour talking to other people .get in and out of cars unaided carry shopping etc etc and I was turned down fro mobility dla



thankyou for your kind words lilyanne and anbuma. I really don't understand how the system works. my hubby and I have always worked, he full time and me part time and full depending on how old are children were at the time. he worked days and I worked evenings, like passing ships as they say. so we have paid our taxes etc and now when we are needing some help they say no. I was told a car ( we have a 10 year old little fiesta) is a luxury as is life insurance ( my twin died suddenly in 2004 and she didn't have life ins so we all paid towards hers funeral bless her,and its something that I think is important), heating is a luxury and surely I COULD work more hours as I look so well!? what do they know about lupus?! chasing my own tail asking for help,im running out of energy to keep fighting x


I have a guide to filling out the pip form if any one is interested I would be happy to forward it to you, It really helped me.


I would like your help in filling in pip many thanks


No problem you can email me at Have you made your initial phone application? if not please do it ASAP as it took them two months! for them to send me the forms


To CanineCrazy and all the other contributors to this thread, my heart goes out to you, I can of course relate and empathise with each of you.

It is very hard fighting a devious, unpredictable and sometimes unrelenting disease like Lupus, and we are all up against it, because in the main there is nothing to see, if we had two broken arms we would get more compassion.

Depression is a known symptom of Lupus. I too lost my job, pensioned off when too sick to continue in 1998, I was finally diagnosed in 2009, leaving behind me a trail of medics who dismissed me as depressed at best or it was all in my mind at worst, with some shocking and quite cruel statements thrown in.

Getting a diagnosis was a relief in many ways, but living with Lupus and all the other little lovely extras we get, well, Lupus the gift that keeps on giving I like to say.

My advice particularly regards Benefits, is get professional help, CAB, DIAL, or ask for the guides from Lupus UK, the forms for ESA and PIP do mean that you have to be repetitive, get leaflets from Lupus UK as information to send in, if you have Rheumatologists, make them aware just how things are for you, statements such as we have worse affected patients, is not your worry, make that clear, you are an individual, and as such should be counselled as individual.

My Rheumatologist always sends an update, her words, listing all meds, any changes, and how she feels I was at that particular time, lists any additional side effects. You have to send in as much evidence as you possibly can.

Use CAB if any of you are in financial distress, or any of the free Debt Advice Agencies, make sure they are free, these free agencies can be life savers, as they give practical advice, help with letters to creditors. For amenities, speak with the companies involved, they can and do try to help, but you have to jump through hoops, and I know when we are fatigued and tired it is the last thing one wants.

And for depression, it can be extremely difficult admitting to this, but I am here to tell you, speak up, it took a total collapse on my part just over 18 months ago, to finally reach out for help, best thing I ever did, have been receiving counselling, still am.

We are our own advocates on so many levels, but we are also still humans, who daily suffer a myriad of symptoms, yes fighting for things to help us, it shouldn't be, I choose to fight not only Lupus, but for any help available, because I feel it is justified.

Good luck to you all.

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