I like to think that I am an intelligent woman (although often proven wrong) and I also like to think that I have got a handle on my RA. However, I am often puzzled by my own behaviour and wondered whether anyone else has the same experiences.
I had to give up my job a couple of years ago and have since been living on Incapacity Benefit and DLA. I get the lower care and the higher mobility although I am asking for care element to be reassessed.
The day before yesterday I had a really good day. I managed to walk maybe half a mile with only one sit down and I even managed to take my daughter's dog with me.
Despite the fact that this is a pitiful distance for most 'able' people and that I spent most of the following day with chronic fatigue and my back hurts like billy-o again this morning - I still feel guilty!!
Somehow I feel that I don't deserve these benefit payments if I can walk that far and even get a bit paranoid about being done for fraud!!!!!
I know full well that I would not be able to sustain employment, a week maybe, perhaps longer but then I'd collapse but I find myself trying to justify why I don't work. Is it possible that I'm preventing myself from getting the best out of my life for fear that others may see me enjoying myself and deem me not to be disabled enough? I'm suddenly becoming aware of a 'disabled' mind set - 'can't do' rather than 'can do' attitude. I used to be so proud of my achievements in overcoming the difficulties. How do I get out of this self-fulfilling prophecy?
And me! My husband is fed up of telling me that I can't work an it's ok. Then I think Need to man up and stop being weak and get on with it. But deep down I know I can't work and I know I do deserve some financial help, I have worked hard all my life and have paid my taxes. We are silly though aren't we don't get down your not alone. Take care x
Hi Judy, I'm still at that stage of 'should I apply for DLA' as I had to hand in my notice at work 6 weeks ago and was told I had to give 3 months notice I told them I would be going off sick as I could no longer cope with the stress and fatigue and pain after being diagnosed 18mths ago. they said I would only be getting £85 a week SSP which really shocked me as I was working 30hours a week but in essence 24/7 as a houseparent living in; I too can walk about a mile aslong as I have my hubby's arm for when my ankles or knees crumple, then I sleep on the settee for a couple of hours dosed up to the hilt. Don't feel you shouldn't have it as I wish it was simple to get but I hear it isn't and I feel daunted at the fact of trying.
Yes you should claim for dla..Your entitled to it. Unlike some of them in london with 10 kids who get a £100000 house and who have never paid taxes in our country. If theycan get that you are surely entitled to some help with your disease. xxxx
Caggy, Apply for DLA and don't be afraid to appeal if they turn you down.(which seems the default) The mobility criteria is whether you can walk unaided without pain or danger. If you need your husband to cling onto then clearly the answer must be no.
The advice is always to describe your worst day and it is probably a good idea for someone who knows you well to help you with that because they will possibly notice more than you.
I had to update mine recently after staying with my sister for a few weeks. She was able to help enormously because she was could compare my ability to hers. I had become so used to leaning on things, using my forearms to save my wrists etc. that I had not thought to mention it. It really is worth applying for.
Thanks for your reply, I spent 3 hours thinking and filling in this stupid form saving as I went got to question 19 I think before I really couldn't concentrate anymore. Just returned after a few sleeps to find it completely disappeared, I don't know what black hole its gone too, and my husband is getting angry that it takes all this effort and has to get me some meds as my throat has closed and my ears and jaw painful, back to sucking my food again, might call GP in morning as she either says its a virus or RA just keep taking the tabs!but doesn't want to see me, new system where GP rings before appt is actioned, She has written to Cons and asked for my appointment come forward. Hey Ho there's always another day.
I fully understand what you mean. I have been off work now for 4 months and feel really guilty when I enjoy myself. I had a lovely day out yesterday with my cousin but got home and was absolutely shattered. I spent the evening lying on the sofa and had a headache and felt nauseous. Hardly slept lastnight and feel awful this morning. Has made me realise it would be impossible to work like this. IHR has been mentioned but then I start thinking amm I ill enough to get it... what if I don't. I realise though that I need to enjoy life while I can...who knows what the future will bring.
Don't feel guilty for having a good day,there are others who claim everything and all they have is a sore elbow or are druggies,so you who has paid into the system should be entitled to help.
I find that the best time for me is the mornings and by the afternoons i flat out exhausted. The problem with ra is people don't see past our face and see us when we have to go to bed because we are so tired and ache,boy do we ache.
You enjoy your good days and when you have your bad days you can remember how you felt on your good days.
sylvi.xxx
How right you are! I should make the best of the good days and go out and enjoy them with my head held high. I can then look back and say 'I did that' rather than hiding away in case people judge me badly for being able to walk on that day.
Well said sylvi just been on the computer for about 2 hours filling in my dla form dam questions are so stupid
Creaky i feel the same, and i thought i was the only one. I have put in for a disability badge and feel so guilty about it as though that i am not really entitled to it. I can't walk properly and for any length. But i do feel as though i have to explain all the time particularly to myself - it really doesn't make any sense. So glad that there are more than a few of us who are as nutty as i.
hi all i agree with sylvi you are entitled to it there are hundreds who get it and not entitled to it,i myself have just got soaked going to a back to work interview and when he man saw all my appointment rheumy,x,rays etc he said maybe i need to be re assesed as to why i,am in that group i am having a bad day anyway but now i am soaked and in more pain so glad my hubby here to make me a hot cuppa xxx
Never feel guilty about having a good day. Grasp it by both hands and enjoy it. With this unpredictable stupid disease, none of us know what is waiting around the corner.
It's them armchair doctors who judge us on a good day and think that we are making it all up or exaggerating our illness that should feel guilty.
I understand what you mean completely! I also have these moments of feeling guilty, and doubting myself. I was on sick leave for 9 weeks, and he last one I was a lot better, gaining strength and having more good days than bad days. Then I returned to work, and unfortunately there no one caring about how I was, only how fast I could go through the overdue work piled on my desk. I lasted only 4 days and I had a relapse. Then I have spent another month off sick, medication increased and I'm not feeling better at all. I can only manage up to 20 minutes of civility at a time, and I don't feel I'll be able to cope with my old job at all. I must reassess my whole career and plan for the future, I'm very scared. In part perhaps is because I have not managed to reconcile in my head what is happening to myself (body and mind), and my new limitations with my old work ethic. Disabled? Me? No way! It is a lot o take on board, But I guess this attitude will have to change if I want to aspire to any quality of life in the future. The most important thing in the world, right now, is you and your health (strength, energy, mood, motivation, sense of humor, etc). Having good days and trying to make the most of them does not mean that you are less ill, or that good day will now start to be the norm. Wouldn't it be wonderful, if it started to be the norm. Hopefully, it will, and then you'll be able to reasses your situation. A good day does not a remission make..........!
All the best.
I guess these doubts are normal. We have to learn to dismiss them. I know, easier said than done
Maybe we measure ourselves too much by standards which were set before RA. I thought I had reconciled myself to my loss of career but obviously still feel it.
Hey guys! I feel so much better about it all now. xxxxx
Teresa. I feel exactly the same as you right now. I've worked hard to get my position in my job and because of recent health problems I can't see how I can go back. When I'm at home if I'm tired I sleep. If I ache I rest. If I'm having a miserable day and don't want to do anything I won't and so on. My job was busy, demanding, physically and mentally exhausting and my work colleagues didn't have a clue about the diease. I don't know where to start with giving my notice or wait to be dismissed. I don't know if I could claim any benefits because I'm too sick to work. I get DLA.
The weather is making me ache and feel useless too.
Hi, Angie. Nice to chat to you. I've been following your posts with admiration. I get what you are saying about managing the illness a lot better if you stay at home. It still sucks, obviously. I'd probably still prefer to be able to continue with my crazy life, my crazy commute, my stressful job and loads of overtime, then collapsing half dead when back at home (often by 10 pm!), and hardly managing to be coherent with my husband at dinner time. But I have been wondering lately if that toxic lifestyle (not a lot of spare time of any kind to look after myself in terms of sensible nutrition or exercise, or quality of time with my family and friends), might have had a lot to do with the onset of the illness anyway. I am struggling now as it is, but as you say, if I'm tired I rest, if I'm aching I stop doing things, and if I am feeling sorry for myself I can have a good cry by myself. I can fantasise about things improving a lot, and I hope they will. But right now there's no way I could cope with my job. I am a Psychologist/Psychotherapist, and listening to other people's problems for 8 hours solid every day (in one hour slots), would be totally beyond my capability. And not only because my attention span has shrunk to about 10 minutes at a time. I guess my capacity for genuine empathy is currently on hold. Or I am just too tired to focus.
At least I don't have children. I don't know how you young mums can do it. R-E-S-P-E-C-T!
That's why your tale of those horrible car salesmen not being interested made my blood boil. If only they knew!
Ah thanks Teresa for admiring me - I'm just plain old me really and I don't let obstacle get in my way being a glass half full person. This disease though knows no boundaries and will catch you by surprise. I'm sitting here with my entire being hurting from head to toes. I've had my morning pills and taken an extra tramadol, I'm nestled under a blanket as I'm cold and I can think about is when shall I have a nap today? My attention span is about the same as yours. Why is that? Is it the disease or medications we take? I'm exhausted from getting in and out of cars yesterday and that's pretty much all I did. If I wasn't in so much pain and my head was clearer I would've told the salesman who most offended me yesterday what I actually thought of him. Instead I just walked out. People can be so judgemental - I may look healthy on the outside but inside I'm not. I think I need to go to bed now as I'm getting a severe headache trying to fight it. Take care and catch up soon. Angie xx
I also feel some guilt often - because I have many more good days than bad at present (since starting the MTX) and I've hassled my rheumy to be seen more often than once a year and have made a fuss about my treatment and tomorrow I am fairly sure I'll be walking into the hospital for my telemedecine appointment looking the picture of health with nothing visible to show him at all.
And yet only late end of last week I was having to walk with a stick all the way up to the weekend and couldn't have driven or walked into the hospital without a severe hobble - possibly even a wheelchair. But for me this is not the case for the majority of my time now and so I feel bad when I am demanding of the medical profession/ NHS and I know that others are much worse off than me.
The guilt goes with the chronic and variable nature of this beast doesn't it? Today I walked the dog without even a limp or a splint and my neighbors commented "what's going on Tilda - where's your walking stick we saw you with on Saturday - you look like a different person?!" and I had to explain how RA can have you disabled one day and up and dancing/ walking the next. They looked as incredulous as I felt! TTx
• in reply to
Spot on Tilda.
Oh! It's lovely to talk to people who UNDERSTAND. x
So many feeds that I can relate to. I was diagnosed in Feb and find some days I can walk my dog (in pain, but without stumbling) whilst other days I struggle to get out of bed. On a bad day I say - Go for it, apply for DLA. Then I have a good day and rip up the form.
After a week at work (college lecturer) I find myself exhausted with shoulders frozen, unable 2 hold my partners hand as it hurts too much let alone chop veg or cook tea, yet I still question whether I am worthy of receiving DLA... Afterall, will it last for 6 mnths when one days is different to the next (we r told to stay positive, we r told medication will return us to normal) - what a dilema !!
Just wish we werent made to feel like scroungers for asking for help to make our disease more bareable.
Tina
I feel the same & I'm not on benefits. It's some kind of Catch 22 situation & it's crazy but I don't think it's us, it's society. Sick people should have the decency to stay sick! 24/7! No Good Days! Whereas in actual fact most illnesses are probably more complicated than that & I'm only just beginning to realise it myself.
I guess it's a mental battle we all have to fight! Good luck!
Why do we do this to ourselves? I've had a blue badge for 19 years and I still hate using it. I get some really nasty looks. One day, I was with a friend and her baby. We parked in a disabled bay and I stood by while she got the buggy out and then her baby. A lady with, I assume, her elderly mother in the car drove past twice then stopped, wound down her window and hurled abuse at me!! I was so upset.
I claim higher rate mobility DLA and get a car which I don't know what I would do without. I'm also on incapacity even though I would dearly love to go back to work. I get so lonely when everyone else is out and about and I'm stuck here. I've just had to fill in one of these new questionnaires and I'm so worried. I know I can't work. I sometimes think that I could but then I think of the logistics - Getting up, getting ready and then getting to work for a specific time, having to stay there all day without a rest and then having to get home again. I'd last a day if that!
Do you watch those fraud programmes and then get paranoid that the car parked oposite your house is a benefits fraud investigator? Stupid isn't it. My hubby won't let me watch them anymore.
The other day, I got a priceless comment "you're soooo lucky to get a car and not have to go to work" I'll swap my life for theirs any day - just say the word... Bev x
Bev. I have actually done the same thing with a car across the road - checking to see if the occupant has spy holes in his newspaper and a false moustache. Hahaha. It's so funny when you write it down on a forum like that. Just how silly are we?..............chuckle, chuckle.
Aaah but if we didn't laugh we'd cry. Some of the farcicle situations I've found myself in over the years because of this illness... I could write a book! Just a couple of months ago, my hubby went into the kitchen to make a cup of tea and when he came back 5 minutes later I was sprawled on the floor having tripped over the dorstep (a great and regular trick of mine). His truly priceless query was "what on earth are you doing down there?". My reply? "oh I was tired so I thought I'd have a lie down!". I'd actually cracked a rib and hurt my hip and spent the next 6 weeks practically unable to walk but at the time, all we could do was laugh!
Gets you like that sometimes doesn't it. My right leg gave out on me in a shop the other day. I instinctively reached for something to steady myself and realised just in time that it was a free standing shelf unit stacked with pans so opted to sink to the floor with the grace of a sack of potatoes.
The shop attendant passed as I was lying prone on the floor and asked if I was ok. "Yes I'm fine" I said smiling brightly while he walked off looking bemused. There was no way I was going to let him witness my undignified bottoms up approach to getting up again. Luckily there were things to grab onto and a sister to help.
I've not got to the point where I have considered applying for benefits for myself yet! But my hubby has - or should I say I have on his behalf. Though he has epilepsy not RA I must add. He also has good days - many of them. Then he has appalling days. Long story cut short his epilepsy means that any moment he can switch off from being a fully aware person to being like he has severe alzheimers. So I am his carer - that's why I gave up my job. He eventually was dismissed by his employers and got his pension.
If you could be entitled to benefits then apply. I know it can be a nightmare (been there, still there, got the t-shirt etc) - but you can get help from your local CAB and some councils have Welfare Rights Advisors who can help as well. If they refuse the claim then appeal. We are currently appealling the ESA decision - he has been migrated from IB to ESA. No doubt no sooner than we will be finished with this appeal he will be migrated from DLA to PIP and then we start again.
My hubby feels much the same about the good days - and has trouble accepting that he is disabled - and to all intents and purposes his disability is not obvious and poorly understood by the public in general.
So I say don't feel guilty - claim what you have a right to - enjoy the good days and make the most of them while you can.
Though that said - I'm not sure I want to make any claim for myself - perhaps I'll just stick with the carers allowance.
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don't get down your not alone. Take care x
Feeling guilty not groovy 
Feeling at my lowest since diagnosis 
Feeling so low at the moment
For information... Did you know DLA high rate mobility also qualifys you for a Blue badge and Disabled persons bus pass
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