More of an update of sorts ;(

[LottieLou96]

Hello lupies!

I've been #laying low, for the last wee while, with my current predicament. And well I seem to be making things even worse - even though I'm as sweet as pie. 🍰

Good points - first time in the last week I've managed to go to work, had another new student who I helped show the ropes - I really want her to excel.

- I had my EEG done and after them frying my brain with the flashing lights (seizure activity sky high), and sleeping off the post ictal issues my brain is calm. That part of my brain is in rest mode, recouping, so I'm free of seizures for a couple of days I hope.

- spoke to rheumi and neuro for the umpteenth time, and discussed in detail the seriousness of side effects of both HCQ, aspirin, Lamotrigine. MAJOR BACKFIRE!

Bad points

- Neuro won't see me or speak to me, and labelled me non compliant and anxious. Now I have to attempt to go to the GP. - still trying to get a GP appt, 2.5-3 months after my first attempt, can't get past e consult or receptionists. I asked for an appt and receptionists said 'no' and hung up on me.

- rheumi are vacant, think it's neuro's job, that I'm seizing on THEIR meds. So still want me to stick to HCQ irregardless.

- my eyesight and hearing are increasingly bad. -my memory and weakness worsening. - hence the attempts at getting help. I've had eye infections that required hospital admission for some weeks as a kid. My Chilblain lupus is still flared, at least I'm not lethally hypothermic, I hit 35C today.

- my mental well-being and QoL is really getting pulled to the max.

PROACTIVE points

- I've had soooo much coffee today that I feel as high as a kite. Helps you deal with injustice and pain.

- I've sent an email to the health board, and made an official complaint about my GP practice, and this will either be resolved in 5 days or will go to the ombudsman. For them being unwilling to assist acute on chronic and help me access any help or service at all. No help, no meds, no nothing.

- I will need to, in the morning, if I get a chance, talk seriously to one of my seniors at work. I have been grieving over the idea of having to loose my job because it's all just getting too bad and I'm getting too damaged. I will have a serious talk in regards to the possibility of a back door entry, and just treat me or at least give me the correct medication in ED, so that I can get on by till someone takes some notice. We are often quiet in the morns (PROTIP) it's good to be sick between 7-10 am in the morn. (If you had to pick a time that is). They will likely say no again, and then I'm back to out of options.

I'm huddled and freezing in my double duvet, electric blanket entombra. But at least I had banter at work whilst being proactive in ED. Even ED won't take me 😔 as a patient and after all these issues, they won't want me full time after the yr ends. - I got the frustration outta my system with going into overshare mode and now I'm just trying to get on by to tomorrow.

P.s. found out that work, didn't even make the OHS referral, 1.5 months later. I'm like okay then, I'll keep on getting by with no support at all in place and no compromise....

But honestly hearing about everything that's going on to all of you at the moment, I am so privileged to know so many strong and courageous individuals, even if it is over this forum. You're a real credit, and bring real value into this world, and you are important and deserve the very best that life has to offer.

Bless you all,

Lottie

[StriatedCaracara]

Lottie look after yourself. You do a grand job at work - but they, as you say, may not up to looking after you. It's not your fault - always remember that.

So much more to say so also messaged you.

[StriatedCaracara in reply to StriatedCaracara]

Re; "Good points - first time in the last week I've managed to go to work, had another new student who I helped show the ropes - I really want her to excel."

When I found jobs were going stale, in the years / months running down to me handing in my notice, I used to look after the youngsters (sometimes asked / some times not - because sometimes folk just got left) - it is fun sharing the skills and expertise we have.

The advantage to me was I could park the rubbish going on - people are more important than the other stuff at work..

I guess it is a hidden sort of battle. I think we are winning if we slot in the good, in amongst all the not so great stuff that goes on.

Great stuff 🤗 xx

[LottieLou96 in reply to StriatedCaracara]

I think that's true SC, when we can do good sometimes despite how we are feeling. When we can find joy even among the sorrow. - a friend of mine who so bravely fought in the current war in Ukraine has been killed in Mariupol today and the consolation I find is knowing that he is now with the Lord. It reminds us that if he can so bravely fight literally for what is right despite being scared and the risk. Then so can we, fight for help, justice and strive to do good despite the pain and the issues of the day. X

[Fredhouseboat]

I’m just so overwhelming angry about what I perceive to be injustice so often served up to lupus patients without rational justification. This is in response to your post , but also all the posts this morning ,.

[LottieLou96 in reply to Fredhouseboat]

Thankyou FHB for responding to my post. I don't know why we are served such a salty reception when many other conditions of a much more minor and less systemic nature are given true credence and appreciation.

Sadly bc the GP practice is private, or as they call it independent, the NHS board can do nothing. It is up to them to deal with the complaint and fix things. So I will remain in a limbo, with effectively no neuro, no rheumi and no GP. Nay sure why this is happening all over again. Sadly every previous times where I've ended up in hospital for weeks or months has meant nothing, and it's still just anxiety. I'll continue to try and do what I can, and try to do my best to cope alone as usual but it's getting more difficult to retain any normality at this stage with it all getting too bad to manage anything I need to.

You know that feeling like you've been hit by a car, that's how lupus fatigue is, even breathing seems like a chore, doesn't matter how long I sleep can't shake it. And well I'm weak everywhere, but it's the right side that's much weaker, and my mind's just not working. Pain is unrelenting and the coldness not helping. Eyes dry and painful, ears aching and infected. Raynaud's and chillblains are thriving despite the warmth of the day. - but I have determination to make it through to Monday, and again try to get help. I just need someone to truly listen.

[Fredhouseboat in reply to LottieLou96]

I’d like to be able to add something positive to your very unhappy experience with your local Health Authority, but all I can do is share what my recent experience with my local NHS trust then subsequently the medical ombudsman. My lupus history includes five rheumatologists to get to my diagnosis. This included two eminent professors in the field of lupus, one in particular who has written many books on the subject and does widespread research, I won’t disclose names, but suffice to say that these two professors were the worst and what I mean by that is that they were the most dismissive, humiliating me and frankly causing harm. Though I was very weary by then of the process I decided to take a complaint against one of the professors and the health trust where she worked. It was an 18 month process and needless to say it was just full of inaccuracies and denial . Following advice I took my complaint to the medical ombudsman. They did not find in my favour and as my advocate and a senior advisor at the Citizens advice bureau agreed with me that I had been treat very unfairly by the medical ombudsman. I also raised a complaint about this particular professor in rheumatology to the general medical Council, their criteria for making a complaint was very tight, and I didn’t really hold out any hope of success. Interestingly they upheld my concerns . It now falls to making a legal challenge, but the sheer fatigue and prospect of failure again is currently off putting. That is not to say that when I feel stronger I will continue, as I feel I’m doing this not just to get the acknowledgement of wrongdoing And harm that a delayed diagnosis caused for me, but to highlight the fact that this happens to many other people.

Lottie I just wish for strength for you, and as you say someone to listen to you and then act appropriately. 😌

[LottieLou96 in reply to Fredhouseboat]

Good on you FHB for already working so hard to get heard, I'm sorry that it's so difficult to get treated, diagnosed, helped and that you needed to go down this route.

It will be an option down the road to pursue these things but like you, I need strength to pursue these things to completion. My story in some way mirrors yours 11yrs, and somehow I feel no closer despite two diagnoses of lupus and a lot of begging to be treated appropriately. I have days like today when I'm in absolute agony, unable to sleep, but I'm still going to try again to get someone to help or listen.

But thank God for the strength to still try.

Stay safe

Lottie

[CecilyParsley]

Oh goodness Lottie what a total litany of bad practice and a total lack of care. I am just so sorry to read this. As for work, can you not make a self referral of OHS? I truly hope things improve for you. I think it is not just the GP service you should make complaints about. Keep fighting lovely and good luck xxx

[LottieLou96 in reply to CecilyParsley]

I self referred to OHS previously, and they made all these recommendations but still don't have power over my department and supervisors. My department won't accept the recommendations made and wanted their formal referral to get written confirmation and assurance on what is best and what to put into place.

I don't like to complain about anyone, sadly my complaint has been thrown out of my health board as they like all GP practices in Aberdeenshire are private and therefore they claim to not have any jurisdiction and I would have to take the fight to the practice themselves who won't even entertain me on the phone or by email. So back to square one.

Rheumi and Neuro I didn't think were all bad, I know they tried a bit, but they need to cooperate with each other and come to some mutually agreed plans and but the effort in, rather than label me as non compliant and not allow me to contact their services either.

I'm pretty lost and tired of it all, but I am tiring to carry on, but I don't know how much longer I be like this. But I have to try to have hope, even though earlier this week I truthfully had lost all hope, which is very unlike me.

Thankyou for your strength, it helps me to be stronger too. I still find joy, and where there is joy and love, hope abounds. X

[CecilyParsley]

That is shocking. Surely even private surgeries are answerable to the GMC? They cannot just operate as they choose, they have a code of conduct. I feel for you honestly as I have been so close to giving up so many times. It is a constant battle to get taken seriously isn’t it? Then to get continuity of care, then consistency of care, then someone who really does care and want to help. As for work are you in a Union? It is abysmal that they refuse to implement the recommendations of the OH adviser. It just makes me angry for you. Big Cwtches lovely it has to get better xxx

[LottieLou96 in reply to CecilyParsley]

You'd think they would be! It really is a constant battle, I guess it hit me a bit harder as I thought after 10yrs I'm finally getting help, but now 11yrs down the line I feel at square one again. They were quite control freakish, bc literally I asked for an extra hour or two later on morning shifts. When recommendation wise I should be able to avoid all morning shifts, get more breaks, switch shifts for appts. I wish I'd never said anything really. Bc everyone knows now and nothing's changed. But I will try to continue to fight for help. It does get harder some days, I go weeks in agony, unable to sleep, think, do what I need to. It's wearing at times. But thank God I have the strength to continue on. X thanks for the hugs and helps