Life will never be the same !!

Hi all im sorry but im in need of a moan and no one else seems to understand how i feel!!! i was diagnosed with lupus in dec 2011 after 3 years of going backward and forwards to the DR with tiredness, pain in my feet and knees also my elbows and shoulders! I was sent to podiatry who told me i had osteoarthritis in my feet i was given insoles for my shoes and sent away!! after returning to the DR as this had not helped at all I was sent to physiotherapy and was told that i have arthritis in my knees ... I was advised to go back to the Dr for pain medication..on my retune to the DR still complaining about the tiredness and pain it was decided a blood test would be done ...I returned to the Dr ( it was a locam DR for this visit ) 1 week later to be told that my cholesterol was high and there was another result that was high but nothing to worry about I was given paracetamol and told to not think of them as the lessor cousin ??? at this point I wanted to cry and scream !!!! after 2 weeks of taking paracetamol I once again returned to the DR I explained what I had been given and what I had been told the Dr looked up the test results looked at me and said I think you have lupus!! I was then sent to specialist who after 2 more blood test confined I have lupus sle ...so that was in dec 2011 since then ive had a reaction to the lupus meds a chest infection that needed 2 weeks of antibiotics and 2 weeks of steroids to clear up .... and 2 UTI s ...I have just received my DLA form back in forming that i do not qualify ..despite the fact that i can not go out on my own as my feet and knees are so painful and i need someone to hold on to as i keep toppling backwards ect ect ect ...i feel so guilty as i cant take my 9 year old out to places cos my feet just seem to stop working !!!!!!! as i said i needed a moan !!!!!!

[margareth8537]

Dear themum

Feeling free to have a moan is what forums like these are for.

We all have lupus - or are involved with someone who has it - but we are also all different. Some days we can cope and other days we feel that it is all just too much. If you have children, there is the pressure to keep going and the guilt when you just can't manage.

At least you now have some idea of what the trouble is - diagnosis can take even longer than you have had to wait, and meanwhile treatment is negligible.

Now you do know what it is find out all you can about it. And tell your family and friends how you feel. So often people say, "But I had no idea that yiu felt like that", because we do try to soldier on.

I was lucky enough to have a very good team at work so that when I turned up with stick and dark glasses, they would leave me alone to get on with something in the office. Eventually I got breast cancer and the treatments weren't very succesful so I had to leave work, but I was able to retire, so never had benefits problems. From others it seems that that can be a battle - can you use Citizens' Advice?

Unfortunately we do come down with things as our immune system is shot, but persevere with your doctor/consultant to get some medication that works for you. One of the main problems is planning for things, but try spontaneity. When you feel fit, do something with the kids. It doesn't have to be much, but you all need some togetherness.

Best of luck

Margaret

[Jaxqueline]

Feel free to moan, it does me good anyway to communicate with people that understand. What I find frustrating is when people say "oh but you look so well". Maybe on the outside. Anyway, being diagnosed is the first step,it took me two years of frustration to get there but many other people have been mis-diagnosed for a lot longer. If you are on Facebook try looking at "Lupus is Real" where a lot of people share their thoughts and advice and it is always good to hear someone who understands. I have three children and hate the fact that I can't always do as much as I should with them when I have a Lupus flare. Today is a good day so I am cramming as much into it as I can. Anyway, keep in touch and number one rule is look after yourself and then you are better equipped to look after others.

[janiceray]

Moan away we are all in the same boat one way or another and its good to get it off your chest,

DLA try appealing its worth a try

Good luck

Jan

[Dorrie]

Certainly appeal, my DR suggested DLA and a blue badge to me and I was horrified but eventually recognised and accepted how much it would help. I get the mobility component of DLA and have a blue badge now.The fatigue is frustrating and people do not always understand because you may look so well; but don't be pressurised to push yourself too hard. After seeing a variety of consultants who could not solve my ongoing chest infections, joint problems, stomach problems etc, someone suggested a iridologist. I have to say this was the best advice. He is also a homeapathist and although can be pricey, best thing I ever did. I have not had steroids for a year, and when I had 3 chest infections one after the other and the antibiotics gave me mouth thrush, back I went to him. I take Bromalin as well and my consultant advised Glucasamine and Chronotadin. I recognise it must be more difficult and frustrating when you have children, but my policy is try to be positive, I always tell myself and my friends i'm fine. My best friend says she will have it put on my gravestone. I once read a book called "mind over pain" which helped. Good luck, and persevere with the DLA, get a professional to help you fill it in either from the voluntary sector or the Benefits Office have people who may help. I am lucky that part of my job used to involve supporting other people;

so understood how to fill in the forms; you must fill it in with the scenario on your worst day. Bless you it is not easy and hope you will have some remission to enjoy the summer.

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Hi all thank you for your comments its good to no that im not alone xxx

[MandaM]

I try and push my Lupus to the background and forget about it, otherwise i think it could overwhelm me and take me down. Yes I make look well, I may soldier on and try and be 'normal' but inside they are times when it becomes hard and a good cry or moan is needed! Stress is my number one enemy and i'm an easily stressed person unfortunatly at times, especially where my warring family is concerned. What's worse is that when family are being nasty and I ask them to stop because it will cause me to go down, i get the oh you're pulling that one again! Grrrrrrrrr. So there's my moan to add to yours. I need to learn not to care so much about others that don't deserve it and get on with my Christmas wedding plans and hope that i'm well and in one peice for that lol!

I'm trying to rise above it all and above Lupus and not let it get me. Lupus is scary to all of us i'd imagine especially after being newly diagnosed. Margaret is right when you're on a good day, make the most of it and hopefully you'll be so tired at the end of the day you'll get a good nights sleep, often an ellusive thing. You could always try a sit down baking session on a bad day or some art and craft maybe a snuggle on the sofa with a dvd and nibbles? A time for real closeness and bonding!

Regarding benefits, that's not something i've tried to claim as it seems to me that they think we make up Lupus or something. Obviously not a real illness at all, unlike the illness that is known as layabout-itis, now have that and you seem to get benefits handed out like sweeties!

[Hidden in reply to MandaM]

Hi, you did make me laugh layabout-itis how funny but how very true!!!!

and your right about lupus not being real when people ask about it and i try to explain they look at me as if im mad!!! and normally say o ive never herd of that!!! i have 6 children aged from 26 to 9 years they are all very good and help me, bless my 9 year old because i cant walk very far and always need someone to hold on to when she comes out of school she takes my hand, she has even offered to give me a piggy back .!!! i think that's a lot of the reason i feel so guilty because they are so understanding if that makes sense?? but at the same time i try not to let them see how im feeling as i don't want to burden them ..I hope all you plans for you Christmas wedding go well .and that you are well enough to have a fantastic day xx take care

[Sue2803]

I have just received my Blue Badge and applied for DLA back in December, still waiting to hear. Talking to lots of others with SLE though, it is common to be turned down, you must appeal, appears to be quite successful then, just make sure when you fill out forms etc you put how you feel on your worst days.

Good luck

x

[Hidden]

Hi,,This is an aweful disease and we all need to vent,moan groan from time to time.I too was only diagnosed last August and i have felt i have had to do loads myself as doctors were not that helpful.I too suffer terrible with my feet,,mixed connective tissue disease,,a part to do with Lupus i am told,,no more i educated myself as doctors certainly did not,Hey we are stronger in numbers,,we have another group that is from Facebook called Lupus is real!!Here our members are safe to moan groan,laugh ,cry all they need too,,always someone to listen and offer support.All welcome.I do hope you get some relief soon and perhaps talk to your docs about better pain relief.x

[Looby]

Hi there! There IS light at the end of the tunnel of frustration....it took me AGES to obtain a definite diagnosis (AND a sympathetic Consultant...). I am into my third year of knowing something of SLE and learning more all the time.

Definitely worth appealing for the DLA and if your GP does not back you on this, see another one (each GP has their own attitude about SLE). Just as Dorrie says - fill it in as if you are in the "flare-up" state - and mention your parental role - that extra amount of income can really help. I use some of mine to pay for household and gardening help when needed.

Sometimes the medication given for osteo arthritis does not help with SLE - in fact can make it worse. I'm now on a combination of Plaquinel and Naproxen, with Tramadol when pain is acute. I used to have to have fluid taken out of my knees every six months or so, but since I've been on these meds, this hasn't been necessary. It is a matter of finding what works for you... and somehow explain to your GP how difficult you are finding it to cope with the "bad" days.

Younger children can be amazingly perceptive - so they need to know you are not always on tip-top form and persuade them to help...... Hope you find this useful.....

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Hi all thank you for your reply s xxx its so good to be able to chat with others who understand xxx take care xx