Feeling very low.

[KatieA]

I have dxs of SLE, Sjogrens, Occular hypertension, Raynauds, peripheral neuropathy, Anemia, B12 deficiency (165), low ferritin (8 (post hysterectomy)), Osteopenia (on a backdrop of Vit. D deficiency), Insulin Resistence etc, etc,

I see "bland" consultants periodically who don't communicate with other and treat me as if my "individual" complaints are minor: "mild lupus", "mild anemia", "shove your Raynauds hands in yr armpits", "look up exercises for your wasting hands on the internet", "wear trainers" for those feet that no longer get me further than the end of the road without having to hobble bag in agony., No one sees the Big Picture, No one sees me! My life is disappearing from me day by day, and no one sees it but me..........

Consequently, I come away depressed and distraught from every consultation.... I used to be a businesswoman who supported herself for 27 years from the age of 15 (after my mother's death); now I'm made to feel like a neurotic timewaster, with no reason not to be "working"......as if I had a choice.I don't sleep, and am in constant pain, for which I MUST always be stoic or invite the wroth of those who have yet to desert me .....work colleagues no longer enquire, family stop visiting, so do friends, and I hide behind drawn blinds from any inquisitive neighbour.

I stopped my meds (apart from pain & sleep, which without I would truly go mad), in December after a particularly bad attack of shinglles (Again), and following two poinless consultations for B12 & Ferritin "invistigations" (just regurgitated my words onto paper and sent me back to GP). I really feel like I need to keep away from the medical "profession" b4 they destroy me mentally too.

All it would take is a bit of empathy, a bit of understanding, a bit of HUMANITY. Is that too much to ask? It would seem so.......

[Purpletop]

Of course it isn't but have you noticed how nowadays most people want a resolution quickly before they move on to the next thing? I don't know why everyone is in such a rush but that's another issue, the point I want to make is that the medical profession want to help you in the first instance but they do expect quick results. Lupus is a long term, unpredictable illness, so it is a frustrating one for those who want to treat you quickly by giving you a prescription and send you on your way.

It is a testament to YOUR humanity that you're expecting it from others. I find that most people are so focused on their own troubles, they barely have time for someone else's. I do think that people listening to us, care - but as they feel they can't really help, they would rather not face us.

Ultimately there is no one but ourselves that has to deal with our illness. If we had the choice, would we want this burden? I doubt we would and if so, why should we expect it from others?

Please try and don't upset yourself with what others think or how others should behave, focus on yourself and what you want to achieve and try and conserve energy, because no one else can fight your corner and having the energy to do it is half the battle.

[jacqueline121]

Hi Katie, my heart goes out to you and i feel your lonliness. It is a hard struggle not having support and this illness can make you feel lower than low especially when you feel your going through it alone. I have had many bad doctors that made me feel i was just neurotic or something and that i should just pjck myself up and get on with it. I lost many friends, my sisters stopped talking to me when i stopped working and went on the sick, even my mum would get stroppy with me if i didn't do what she wanted me to do..as if i was still fit and healthy. It took a long time before i got a decent doctor who seemed to understand and asked me all the right questions. He also diagnosed Fibromyalgia which was the missing piece of my complicated puzzle. If you need a friend message me. I'm on my own and don't work so i have the time to listen. I think you should try and get another doctor if possible. I'm not sure where you live but if your anywhere near Sheffield i have a great doctor there and a lovely lupus nurse. Love and hugs xx

[Dumpypug]

Hi Katie.

I really feel for you and everything you have said is exactly how I felt last year. It is shocking how friends and family leave you when you need them most, I found it esspecially hard as I always help and support people whenever they need it so to get nothing in return when I needed help was a huge kick in the teeth.

I think anyone suffering with an invisable illness somehow has immense strength that pulls them through because at the end of the day we are the ones that has to live with it and keep fighting when no one else even notices.

I think you really need to take control of this and quickly. You need to find a specialist in your area, where abouts do you live?

Is there a support group in your area? I know this can seem daunting and when I first went to meet the girls in my support group I felt physically sick, but they have become my friends, they are my biggest supporters and have pulled me through some very tough times. I've closed my circle of friends as well, I have lots of people that I know and like, but very few I would actually call a friend, I expect very little from them and it stops me being hurt and disappointed when they show no empathy or support.

Facebook and sites like this are also great for connecting with people who are going through exactly the same, and people are all too willing to listen, even if you just want to rant and rave.

I hope you feel a bit better soon

xx

[kewsapril]

Hi Katie,

Like everyone my thoughts are with you.

Sending you hugs xxxx

Kay

[mstr]

Hi Katie,

I truly feel for you and can only echo with the brilliant responses above. When the consultant states that lupus is only 'mild' though I would calmly correct them. For example, you could say that whilst lupus has not gone to your organs sofar there are still daily struggles with fatigue/stiffness/aches/pains/forgetfulness/flare ups and infections. You can say that this may be 'mild' in medical terminology but it certainly not classed as such by yourself. Then when consultants have heard this kind of response enough they will then begin to understand exactly what it is like to live with lupus and possibly even empathise. You still have a voice - the medical profession can learn all they can from books and treatable illnesses but there is still nothing better than learning directly from the patients. I hope things get easier for you xx

[Shanti]

Hi Katie know how you feel about the lack of compassion etc, some people should experiance this for a while and then see how it feels. Hope you feel better soon, love an hugs, Kath

[uzi41]

Im very sad to hear that you are made yo feel this way, there is no way to make others realise that i may look normal but am being tormented inside.... I myself havent ever expreianced psin like what i hav now.... But at the same time find it difficult to ask for help, family and frejnds only underrstand what they see which is someone who just gets on with things. I found great people on this site who understood everthing i was goin through and hav given me the support and strenght to get on with day to day life. I hope u too will find this, stay strong, try and stay focused one day at a time, u can do it... Wish u well.. Uzi.. X

[KatieA]

Thanks all for taking the time to respond. I'm not one for social websites, or even "forums"..... wrong age, but its comforting to know that someone understands. Tks. K

[Sher78]

Because lupus affects every1 differently, coupled with the fact all the extra little secondary conditions it brings along sometimes, plus the fact that it seems 2 mimic everything else, it's not an illness that is 'Text Book'. I was diagnosed 19 years ago & thought I knew exactly how my lupus affected me. Yeah right, 2 years ago I started experiencing things I'd never encountered b4 & yep, u guessed it, all caused by the lovely lupus & her secondary conditions. It's a condition that we (those of us who have it AND the GP's, Rheumys etc) will forever b learning about I fear.

My Rheumy thinks I am a sandwich short of a picnic half the time as I come out with all these weird & wonderful new problems every time I c him which I know r caused by the effects of lupus etc (luckily I am still in touch with my original retired rheumy who was a specialist in lupus) eventhough he himself will argue the toss with me. At the end of the day, u know u're body. As uzi says, stay strong, stay focused & stay bloody determined.

[Lupo30]

KatieA

I know exactly how you feel. I also try not to see the doctors unless I can help it. My consultant is pleasant but you don't get to see him all the time. Once I went to the rheumatology clinic and was asked by one of the doctors, 'So what do you do after work, go to the gym?'. I don't work, due to the fact I feel so crap, and as for going to the gym, the chance would be wonderful, but I think that will be another life now! So yes, I have seen the bland doctors and damn right stupid ones as well who don't even read your notes. I think sometimes when you have so many chronic illnesses it is easier for doctors to blame the disease that they don't specialise in to get you out of the door. As Sher78 states, you should stay strong etc. You know your own body. If it wasn't for a lot of us persisting with the bland bunch we would be in worse states now. Keep strong.