The counselling helped me put some things into perspective and has enabled me to turn a corner. But I am kind of a little but angry that I wasn't offered anything when I was first diagnosed or had it discussed with me until I had a full on mental breakdown.
So really interested to hear how others have got on???
SLE/ fatigue/ debilitating & depression..... Thanks
I was diagnosed with lupus in 2004 found the same as yourself absolutely no support at all the disease was not explained well at all my wife and I joined the local support group witch was all women apart from one other man we were not made very welcome at all however became good friends with other man who was a great help and support to me
I may be wrong but I think even lupus UK is more about raising cash than providing support to people who are very I'll can't work and try and live on very little g
I have to dispute your statement that LUPUS UK is, “more about raising cash than providing support to people”. LUPUS UK contributes a lot of funding to medical research, to specialist lupus nurses (currently in England and Scotland), to raising awareness and understanding of lupus both in public and in the medical profession and we have a small welfare fund available. In addition to this, we also help with support peer led regional groups throughout the UK, we have a network of trained contacts who volunteer to listen to people on the phone and we provide online services (including the community on HealthUnlocked) to help bring people with lupus together to provide advice and support to one another. We would like to be able to offer more support for people with lupus throughout the UK, but we are a very small charity with limited resources.
Any funds that LUPUS UK raises are used to support people with lupus. We have to pro-actively raise funds and encourage others to fundraise for the charity because we receive no government funding or lottery grants and without funds the charity would not be able to contribute to research, lupus nurses and provide free information to patients, carers and medical professionals. In response to omega – LUPUS UK does not gain financially from our fundraisers, our annual report can be viewed on the Charity Commission website if you would like to see exactly how our money is spent.
I’m sorry to hear that you didn’t have a very good experience from your local group. It tends to be the nature of our groups that they are mostly women because 90% of people with lupus are female. Was there anything in particular that made you feel unwelcome other than that so we can pass along the feedback to make improvements in the future? I am pleased to hear that you made a friend with the other man at the group and he was a good support for you.
Hi Paul Howard firstly that was a good rant let me start again after diagnoses of old there was no support at all from health services and very little from GPS I was only patient with lupus
I heard about lupus UK through looking lupus up online feeling very I'll and having at that point having lost all my self confidence went along to my first support group meeting only around 4 to 5 people came to those meetings now 10 years later there are no meetings there are around 30 lupus patients in the whole health board area if I offended you or anyone else with my post then I apologise but in fact we are a very small minority in nos patient terms g
When you are sent raffle tickets to sell and asked to do other fund raising events, it does grate a little when you struggle to look after yourself and survive.
I question so much money going into medical research, too, because I can take no drugs, and invasive treatment always kicks back at me.
All my symptoms started after surgery and dangerous drugs that I only found out the danger several years after, obviously they weren't right for me.
Lupus and immune system problems are difficult to treat with drugs because of the fact that the immune system doesn't work in the normal human way, so why isn't more research put into alternative and complementary approaches for patients like us?
I have used these methods for 14 years now and manage my health that way - it is a difficult life, but not as bad, I'm sure, as it could be if I had gone down the conventional route.
Even blood tests cause my arms to swell, bruise badly and become very painful.
In addition, it would appear that the NHS/conventional service is making very little progress in finding a 'cure for Lupus' with all the money raised from Lupus fund-raising, from what I can see.
We have a good local support group and committee who work hard and are very caring - but without them, I am sure patients around here would be very isolated.
It seems to me the health service only wants to know you if it can prescribe loads of drugs to try, and for me, I know that just makes the problems worse.
There needs to be alternatives to drugs for patients with immune system problems because most patients suffer the side-effects due to the abnormal immune system, even if they help one particular group of symptoms.
Hi Cann. We appreciate that there are people that are not able to sell the raffle tickets and we don't expect everybody to. We send them out because we do raise a lot of money thanks to the people that do sell them. You can request to no longer receive the raffle tickets by emailing headoffice@lupusuk.org.uk with your name and address.
Well Said x
"lupus UK is more about raising cash than providing support to people who are very I'll can't work and try and live on very little g.."
How sad is that. And perhaps, how even wrong. Registered Charity making money out of Lupus for the financial gain of themselves (unless the Charity aim is solely medical research)! Could the charity commissions investigate on this? Lupus is such a hideous disease and if that is the case then something is WRONG.
Hello omega. I have responded to your comments above in my reply to farmerfester.
Hi Paul
Will take a look when my brain fog clears a bit..thanks...
NHS GP receptionist was so unhelpful and my brain needs some recovery first.
I only just joined lupus uk. So can't comment.
My issue was more with NHS.. & the fact I didn't even know there were support groups etc.
maybe ( just maybe) with some help I would have got help with the depression, the feelings of guilt that I'm not really sick - cos you can't see anything right ( how many times do you hear that?) & therefore I should just get on with things but you can't or you push yourselves beyond exhaustion.
I just feel very let down as my current time in my life might be a little bit easier to cope with...
Dear Samh, So sorry to hear that it took so long to get support and as is often the case things often have to deteriorate before support is provided.
Personally my consultant informed me at diagnosis of Lupus UK and suggested I become involved in order to get support. It wasn't until I had to take early retirement that I realised the need for counselling as I felt I'd lost my identity as a person and as a professional, fortunately my GP was able to offer six sessions of in-house CBT with the aim of coming to terms with both the diagnosis and the impact it's had on my life. If I'm totally honest I still struggle today and some times are worse than others, on the whole I try to accept that SLE has changed my life beyond recognition, but at times (often when I'm in a bad flare) I have difficulty controlling my emotions and become terribly weepy over the whole situation.
I think I'm saying that on the whole it is tough to come to terms with, many people on here are so so strong and positive they are totally inspiring. And something that generally picks me up is realising that things could be a lot worse.
I wish you well and you've raised an interesting topic of discussion.
As for the other responses, I'm sorry that farmerfester didn't receive the welcome one would hope for at his local group but have to disagree with the comments made about lupus UK and am inclined to agree with the comments made my Paul with regards to Lupus UK and fundraising. In my opinion Paul is often responding to people on an individual basis on this site, he welcomes new comers to the site and provides support via e-mail/telephone etc. Also if you read the posts regularly (as I do) you will often see Paul (or colleagues) popping up to offer advice and provide assistance, support and advice on many subjects.
We are lucky to have this site and to have lupus UK and lets not forget that as in incurable disease research is vital if we are ever to achieve more than just 'managing' the symptoms of our illness.
Thanks for this. I've just recently "retired". I'm only 40. I'm so fortunate I have insurance so money wasn't a problem. ( thank god!). But accepting I can't play with my kids, go out with friends etc has been very tough.
My marriage unfortunately broke down In part to my illness so I do feel very often on my own to manage my illness. I don't say alone or lonely cos that is very different emotion in my mind.
I brought up I felt depressed and that the high dose of prednisilone I was on at the time wasn't helping matters to be told by rheum that's for your gp and that anti depressants take too long to work. Hmmmmm
I just feel that the level of wrap around care is lacking and not sure if this is common and if anything could be done. And how???
Hi Samh
I am so sorry you are having such a tough time. Being 40 isn't an easy milestone to deal with specially as you've had to give up work and lost your relationship due to Lupus. It's no wonder you feel as you do and I'm sure given time and being kind to yourself you will feel better. I don't think the NHS is very good at giving help for us patients who can feel very overwhelmed at diagnosis time or having problems coping with 'being ill'I went thru a very bad time and have helped myself with learning meditation with headspace.com, very helpful it is. When you feel better you might be able to do some voluntary work, it would stop you feeling 'written off' even if only for once a week , you don't know who you might meet. I hope you feel better soon. HugsX
I was diagnosed in November and I joined Lupus UK immediately, along with this site. I haven't been offered any counselling by GP or Consultant even though the depression I was experiencing when diagnosed was like nothing I had ever experienced before. Do you think the health professionals under estimate these symptoms of Lupus? It's both the depression Lupus brings and then dealing with your diagnosis and what it means.
I think it's that there is no care team. Ie I see rheum for lupus etc. I see hematology for my platelets ( or lack of) which is lupus driven. I see my gp first for everything else who then says go see your rheum who can't see me for 9 months..... And it's a never ending circle.
I am a lot better now to say these are my limits or acknowledging if I have a night out with the girls I need 2 days to recover ( 1 for the hangover the 2nd for the sleep lol).
It would be great if there was a list that said. This is happening got to rheum. Or go to gp. But that's just how my brain works. It's all so confusing sometimes.
HI, I had low platelets diagnosed first, I managed to get discharged because the drugs didn't make it any better and I didn't bleed to death! I just wear a medic alert bracelet that says I'm a 'bleeding disorder' !
Check whether your Rheum dept have a phone line. We do and I would phone them up if you think its them and see GP if you are unsure. My GP acknowledges that she is fairly new to this so we try and work it out together. She knows from my low platelets that I'm not a 'panic'er. I'm also lucky to have a friend who has Lupus who helps me.
I think they avoid lists because they think we will imagine we get everything on the list!
Hi Alice. If you don't mind me asking what's your platelet count? Mine averages about 25 -35 and that's on top on the drugs I take. & I've been wondering if they are actually doing anything apart from make me feel depressed, fat & bloated.
The only ones I feel working are the plaquenil & the amatriptalyne (?) So I was going to ask rheum if I can come off the steroids / mycophenelate
The other symptoms I've learned about in the last few weeks since I joined is the brain fog ( thank god I'm not going crazy by forgetting the name of things & even my best friends name) the cold hands/ feet, the migraines.
I just thought it was the joints & platelets.
So glad chatting to others & that I'm not alone. I spoke to my ex & told him about this site & all the things that annoyed him he now knows I had no control over
A bit long winded but just feeling relief of sharing.
I have a friend at work who has ms & when he was having a flare up because it was visible he got a lot of sympathy. All I could do was say I was having a flare up. And people just didn't get it. Even when I was hospitalised twice in 2 years for immuglobulin transfusions when my platelets dropped to 8 & 12
Thanks sam
Bless you.
My NORMAL was anything from 10 to 15 platelets per unit, less than 10 was not uncommon and sometimes I got as high as 20 ! They tried me on steroids and it didn't work, spent a while with Consultant wanting my spleen, me refusing and after a while I spoke to my GP and said since I'm not taking any drugs and I haven't bled to death was it unreasonable to ask to be discharged, she agreed with me, so went to ask the consultant to discharge me! I have a pass at the GP and if I think I'm in trouble - massive bruise bad sudden headache - I can phone up and have a blood test that day (full blood count, just to check platelets)
My kids 'check' rides out for me. At the water parks in Disney they would try everything first and then tell me if I was allowed to do it, or whether it was tooo bumpy for a bruisey mummy!
Since Lupus I started taking hydroxcholriqune (?) its gone up to 30 ( I haven't seen 30 for years), but came down a little when I started on mycophenelate (don't like that drug, going to fall out with Dr about that one)
Strangely my husband was great about the low platelets, but is rubbish about the Lupus. But for me, you can't see the Lupus, but Oh Boy can you see the bruises. You can't see brain fog can you. I think he just thought I was turning into a lazy forgetful cow and its not got much better since the diagnosis.
Hey ho.
I'm going to discuss this on Monday as I don't think drugs are doing anything. Thanks. As you said if nothing's changing you know yourself if you feel bad.
My best brainfog is asking prople if they want a cup of tea get to the kettle & forget what the answer is. Having to ask another 2 times. My kids are now getting annoyed with me asking repeatedly what they want to eat :). Thanks for sharing
I once sent my kids to the post box in the village. It's not far and couldnt of taken more than 10 minutes. Anyway I wondered where they where and totally bamboozled them when they returned. i was quite annoyed telling them not to leave the house without letting me know in the future. It's been a few years now so they use the brain fog to their own benefit now. I will be keeping a log of the monthly pocket money from this month, lol xxx
You have to laugh see the funny side if possible. Although its hard today. X
I have said before that, until i joined this site,nov 2013, I had never conversed with another lupus sufferer. I was diagnosed in 2005, so a long time in the wilderness !!! Because I had spent 8 years ill without diagnosis, I was pleased to be finally recognised as having something wrong with me. This is not right. I should have been devastated at the news, but it is a term used by a lot of sufferers. I don't remember who pointed me towards the Lupus News and Views magazine, but that was my lifeline for many years. I am glad to find this site now as I would say that the magazine is all fundraising. All the pages are full of quests for money, and while I don't need to be educated on the importance of this, I do miss the info pages. Members letters, and Prof Hughes column are rare now. I tend to only look at first half of magazine now.
I hope the counselling has helped you, it wasn't offered to me. I think that diagnosis is only half the battle. We still have to prove ourselves with rhuemys. If you say you have been suffering, but your bloods say, 'that week, of your appt' your fine, you have to trot off with a return appt 4-6 months later and hope for the best !!!! Relationships do suffer in the process. What drives me mad is, you put yourself through hell to put a meal on the table, or do some housework, and your family think you must be well. You end up in bed the next day and they say, but you were good yesterday !!!!! We all have to find our own way and if you can get help, you are very lucky.
Hi I would like to say firstly that I do think that it is only natural that chronic illnesses/serious conditions cause us to feel depressed. I think it is the coming to terms with the lifestyle changes that such conditions bring. Samh ....for me it was a slow process that I had to go through myself from denial to full acceptance. There were times when perhaps it would have been beneficial to have some counselling but at the time I was too fatigued anyway and probably not up to it. As time has gone by I have begun to understood the condition more, the flare ups, the meds and who to call when support needed etc.
For me personally I have found Lupus UK support absolutely vital. I found Lupus UK on line myself and when I rang and spoke to someone at head office I felt listened to and supported (pre diagnosis). Just talking to others on this forum has been a big help. My previous GP was anti looking at information on the computor and this is one thing I have found 'old school' thinking. To me that implies that I haven't got the wherewithal to read, digest and understand what is pertinent to me and disregard what isn't. Thankfully I went ahead anyway and Lupus UK has assisted me when I have needed information and Paul has responded asp. I would like to add that since then I have informed my now GP about the work of Lupus UK. I personally want future research so that we can get the biolgics meds in the future and can all be entitled to meds like rituximab and not have to work our way through toxic drugs that are not fully effective before we can try the better drugs.....and all down to costs!
I'm guessing that the NHS would fall apart if we were all to access counselling so for me there are alternatives. For example, we could pay to have counselling....it does not have to be someone who understands lupus exactly just someone who understands the implications of chronic diseases and the losses that we go through when diagnosed. I also think it is worth exploring what is available locally that can offer support. For example....one local charity in our area also offers counselling via the GP. I also know that Lupus UK do have telephone contacts too and again this is something I did prior to diagnosis as I needed to talk to someone who understood. I do think it is a lonely road before diagnosis though and in the future it would be beneficial if counselling were to become available. I also took information from Lupus UK to my local GP surgery and provided a book for them for health professionals on lupus too. For me I would have been totally lost without the support of Lupus UK and this is why I both my daughter and husband have already completed a 10 mile and a half marathon run to raise money for them.
I think this forum in itself is excellent and if I have a question I can just raise it on here and that is therapeutic in itself as we are all at different stages in our journey.
In an ideal world it would be great to have counselling/at the very least told more information in the beginning....but then maybe again that might have been too much to take in at once. I do think if we were told that it is incurable but it can now be better managed than ever before and we have a normal lifespan then that would be reassuring instantly. Despite having ANA antibodies at a high level, mouth ulcers, photosensitive, malar rash, joint/muscle pain/swelling/ casts in urine ....I still have UCTD with rheumatologist saying in her opinion it is lupus and inflammatory arthritis. Again it is the uncertainty which knocks us as I clearly fit ACR criteria for lupus so we do not necessarily fit neatly into one nice box. I think this is why it is also hard to provide counselling as these immune conditions evolve over time as I am now learning.
It's a good question Samh and it has got me thinking....so thank you.
It is a struggle and ul have ups and downs. Iv had sle for 20 yrs recently i found forever living products that treats sle from the inside and out. Sle efects mentaly physicaly and emotionaly and these priducts have helped me in all areas of sle
hi samh I was the same. but my gp were really good and offered me counselling and referred me to a pain management course. these have all helped me. but I do feel that lupus can make you really depressed. I have memory loss now to add to everything. its hard but there is suppoer out there
the local groups have not materialised. phoned two yeas ago. they never phoned me back very vague. but the head office is very good and helped me quite a lot. also this site has saved my sanity.
This has been a most interesting discussion. I think many of us have had the same experience as Samh, being offered a diagnosis (after many years, in some cases), but little information and no support. That is precisely why I find this site a godsend. The NHS is so overstretched in every direction that they don't have time to treat patients as human beings a lot of the time. I also have autoimmune hepatitis, and there is absolutely nothing that I can find which gives me any information or any support, other than my consultant whom I see for 10 minutes a few times a year. My daughter has transverse myelitis, and it is the same for her: the only real information she gets is from her medic friends.
So to sum up, I think we are really lucky to have Lupus UK and this forum especially, there are an awful lot of people with very unpleasant chronic disorders who really have nowhere to turn.
Hi Samh
I was sorry to hear of your experience. But I also understand.
I have been going for various appointment for a couple of years now without a definite diagnosis. From what I can understand many of these connective tissue diseases take some time to evolve. This leaves some of us in limbo for some time. They are not totally understood either and quite a specialised subject. Due to this, unfortunately, it often means less money is given to the research and development of the services and the number of doctors and staff who have in depth knowledge is limited.
My initial encounter with these diseases was as a staff nurse on a specialist ward but my time there was limited to under a year and it was over 20 year ago. A lot has changed since then, for the better, thank heavens.
I am now a Practice Nurse and my knowledge was still very poor until the day after not feeling well with extreme constant fatigue, finger and knee joint pain. A colleague sent some bloods off for me. Unknown to me she had sent a whole screen for ANA etc. they came back positive ANA with borderlin DNA. Since then I have been confused. Since then I have improved , then flared, been prescribed Hydroxychloriquine and now Methotrexate.
I have been referred to 3 consultants. The first a rheumatologist who said I was I'll but could do nothing. The next a consultant for Cfs who referred me to a different rheumatologist who is great. She has been very understanding and started treatment. Last month I told her how things here and now I'm on Methotrexate. This was a bit of a surprise as I was under the impression I was borderline.
Last week I saw the Nurse Specialist and I got a confirmation YES I have a connective tissue disease but at this point it is still evolving but the bloods where still going up and it looks like I could have SLE and/or myositis. My symptoms are not in my head. I felt happy to know at that point but then I had to fight the tears, the recognition of my dread. This was a disease and wasn't going away. I had my 11 year old with me so discretely wiped away the tears. It was good to speak with someone who listened and I wasn't going to frighten or upset with my questions and worries, like family.
It is hard to come to terms with but it was a start to speak with a professional at last.
Unfortunately it looks like the NHS doesn't have the resources to identify or fulfil this need. We just muddle on and on occasions feel very biter, especially when I'm at work and I shouldn't have gone in because I'm exhausted, stiff and in pain but no one seems to notice.
Hi Samh so sorry to hear of your breakdown. I was diagnosed 5 yrs ago and am still strugglingto come to terms with this different person I have become. I have had some counselling thro occupational health. I am slowly but surely accepting that there are limitations on the things I can accomplish each day. One day at a time is all I can say and although there are limitationsthere is also so much you can stilldo
Hi Sam,
I have had SLE most of my life, I was diagnosed on the late 1970's when still a child.
No counselling was offered to me at the time and I had no idea what was happening.
I had contact with Lupus UK which gave me some idea that there were other people out there with the same condition, which did help. It can be very isolating to not know anyone else with it. At the time obviously we did not have internet. I got quite depressed during my teens but due to my circumstances I was not able to access any support until I was in my 20's and had a very bad health meltdown and had to leave my job and then my GP insisted I go for counselling.
It was very helpful as I was sort of forced to look at how my critical attitudes to myself were not helping.
Since then I have also had some sessions with a health psychologist and I also see an occupational therapist when I need to talk things over.
Hi, Sorry to hear about your struggles. But Ironically, I was offered counselling before i was diagnosed. My family was worried I was depressed because of my fatigue and other symptoms. I was basically told I was crazy because they couldn't understand what was wrong with me.
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