PUSHING LOVED 1s AWAY

[Naz2005]

Hi im always so moody cant be bothered with anyone no energy to even have a conversation i love them all dearly but i just want to be left alone most of times even though i rely on them alot i hope its just a phase that im goin through hate the person i have become 😭😭😭

[suzannah16]

Naz I am really worried about you, some of your posts have been very similar to how I have been feeling so I can understand at least some of what you are going through. I finally plucked up the courage to see my GP to talk about depression. He has given me some tablets but it is too soon to tell if they are helping and also arranged for me to speak to a health therapist. Maybe this is something you could consider, I know this can be a hard decision to make but with the long term health problems we all have I feel we are justified in feeling low. please speak to your GP even if it's just to talk.

[Naz2005 in reply to suzannah16]

Hi i already suffer with depression been on medication & seen regular counselling but theres good days but mostly bad days xxx

[overnighthearingloss]

I'm not saying it will necessarily be of any help but there is an online series you might like to watch which might give you some alternative suggestions that you may be able to incorporate into your overall health plan.

autoimmunesecrets.com

If anything in it is useful, it will be a step forward

[Naz2005 in reply to overnighthearingloss]

Thank you x

[Lupiknits]

I don’t know if this helps but have you had your VitD tested? A lot of us have very low levels and that can cause depression.

A hug anyway x

[suzannah16 in reply to Lupiknits]

I didn't know that about vit D, thanks

[Naz2005 in reply to Lupiknits]

Thank you yes im on vit D tablets didnt know that xxx

[DJK99]

Hey Naz -I watched the selection of the videos Overnight Hearing Loss (ONHL) mentioned for Lupus earlier in the year when they came out and it was quite interesting. Was recommended by my at the time acupuncturist. It was pretty anti orthodox medication - and i have always been all my life and was brought up that way (which was hard as its clear now Ive always had Lupus affecting skin badly when v little and also my bones etc then thankfully v mild heart issues) but my dad was into naturopathy at the time in the 60s so put me on very restricted diet (ie v healthy, no sugar, dairy etc) and a ton of high quality vits every day to blast my system plus put in a plumbed in water purifier from the USA and got a top of the range juicer and fed me all manor of concoctions , plus drinking tons of water all day, which really helped the skin (no GP visits for any health stuff at all as Dad was against) - have carried on like this generally all my life and I truly believe this has really kept this nasty disease down.... plus sleeping tons as much as I can... but I started a v v stressful job 5 yrs ago and it tipped my bod into moderate Lupus I think... plus was perimenopausal... my heart got worse about 10 yrs ago too again due to stress. Stress - the worst thing for us! So now Im on methotrexate (couldn;t tolerate Hydroxychloroquine) and Nifedipine for the Raynauds Ive had since late teens or earlier. cant remember (55.5 now and brain is a little mushy!). So - Im now pro medication as theyve helped. Sorry Im blathering and will get to the point of your post in a moment but wanted to give you background.. and comment on ONHLs post - Basically the videos on autoimmunesecrets state that a lot of peeps feel Lupus is a result of trauma in childhood. Now that would definitely fit with me. But I think my ma had it too.... mind you, she lived through Central London in the blitz(!) and her mother didnt show her love and was shipped allover the place and all sorts. If long term trauma in childhood plus high stress lives and rubbish diet/dehydration affects the bod to become so dis-eased/inflammed that idea totally makes sense for me... its just what to do about it eh? Obviously up the healthy diet and water intake, vits etc....great for our mental and physical health as Im sure you know. And so to answer you, Naz, I totally understand how you feel about keeping yourself to yourself... Ive done this for a good few years now... I didnt know what the hell was going on pre diagnosis.. I just havent been able to go out much like before as so exhausted after giving it all to the new very intense work.... and neither had I the energy to see people for long if they visit and have even had to end a budding personal relationship. Just been sitting in my kitchen looking out the window at the garden listening to music - or not even taking my ear plugs out from the night before as just needed the absolute peace. I have cut my hours at work and work from home 3 out of 4 days as just couldnt stand the noise and pace at work... but still Im unwell and just need to be alone - and sleeping as much as poss. I was down about what it has done to my life/ friendships / previous lifestyle/ work etc, but now I have come to terms with it a lot more....I had 6 sessions of therapy through work - she was lovely but no miracle cure about making it all go away - it was about acceptance and also cutting down on stress! I understand it is what it is but its not the end of the world obvs.. but it is a change...and now I only have mates visit that I know understand - and have lost my oldest friend along the way. Pretty devastating. I go out when I can and organise my relaxation times around those special times. You dont say how old you are.... Have you been wanting to be alone for long? Is it a sudden thing? Or crept up on you? Do you feel you need help? Or do you feel its just due to needing time to yourself (as youre exhausted and irritable - both Lupus symptoms obvs) - which I have always needed/loved actually - and that you enjoy that time to yourself so you can store up time to be with those you want to be with when feeling more able? I think it would be good to think through your reasons for how you are feeling... and then maybe let your loved ones know what you need them to understand. I have seen a few videos of Lupees explaining how this can be hard for family to understand - but they just have to. The Lupus UK website also has a great advice leaflet on their site lupusuk.org.uk/family-and-f... - but more importantly maybe the one about depression lupusuk.org.uk/lupus-and-de... . If you are happy being alone but sad because of your friends/family not seeing you, thats one thing - but if you are really very down then you need to have an urgent chat with your GP and Rhuematologists to let them know how youre feeling - they need to ramp up the support youre getting eh....and maybe see if the options on the Lupus UK pamphlet might help to talk to if youve not already gone there? Please continue to reach out on here as were all here to help each other - I dont know what Id do without this site! Big hug to you and please let us know how you are doing, D x

[overnighthearingloss in reply to DJK99]

I am not anti drugs and I am grateful that I am in the care of some of the best in the field but what really irks me is the constant research, research, research and still the official line is that there is no cure. But whenever I suggest that there might be other promising avenues that might be worth persueing I am often shouted down by admin.

....it's ok we understand you have lupus, you are allowed to feel crappy. You are allowed to pursue umpteenth drug trials and donate to our funds, but there is no cure, that's final, and do not dare to suggest there may be some other avenues that can be explored.....

I don't believe that is an acceptable approach. And because there is no cure anywhere on the horizon in conventional practice, it makes some sense, at least to me, to explore other avenues.

I do not understand how we can have the ability to send people to the moon but with millions spent on research across the medical field we cannot move forward towards relieving the suffering from these conditions.

I don't know, maybe it upsets sponsors of forums such as this or something when a patient steps out of line. There we have it. My rant for today, when i am feeling pretty crappy.

And as I have said on so many occasions before. This isn't a hate campaign against doctors or nurses, who have been there for me on many occasions in the past and I'm sure they will be there again, but we should be open to exploring other avenues if current ones have no trump cards.

Admins if they are truly on the side of patients should understand this.

[DJK99 in reply to overnighthearingloss]

Hey there ONHL - i totally agree - in my experience (as youll have seen at length above I am so into treating the body like a car - ie put in the right fuel or it just wont work right... but I guess that can only do so much.. plus as much exercise as works for you. I think part of the videos were about looking after ourselves in that way as much as poss.. but if its about the result of trauma inflaming the body then I guess as much therapy and self help one can stomach is also essential. Lupus and the raft of vile autoimmune conditions are , after all, dis-ease... so we gotta try and love our bods in every way as much as possible - an thats not just throwing medication at it I feel... gawd knows what state I would be in if Id not had the extremely healthy diet/lifestyle forced on me by my dad as a tot, and taken that forward in life. We owe it to ourselves, and it gives us back some control. I remember asking my Rheumy if hed heard that eating alfalfa sprouts were the worst thing for Lupus flares and he hadnt. I was quite shocked... Id read it somewhere (on a natural health website obviously) and at that time had been eating a ton of them every work day for about 6 months - so a whole container full every week - and guess what, I had nasty lesions allover my hands.. didnt know what they were but thought eating them woudl help as great for the immune system! Now I hadnt been diagnosed with Lupus at that point - just UCTD, so I stopped eating the alfalfa and bingo - the lesions started to go away... and then didnt come back until I had an operation and obviously had a reaction to the general anaesthatic etc... same happened recently with my bunions op..well, the stress of work and worry leading up to actually. Orthodox medicine doesnt generally see eye to eye with non-orthodox... so its up to us to bring it up but..... I wanted to ask ONHL, what do you mean by admins shouting down? Who are they? Your Rheumatologists or GP...?

[Paul_Howard Partner LUPUS UK in reply to overnighthearingloss]

Hi overnighthearingloss ,

This is a peer-support forum for people affected by lupus and other associated conditions. There are no 'sponsors' to 'upset' and I think it is unfair to suggest that the administration team here at LUPUS UK would not be 'on the side of patients'. LUPUS UK is a charity for all people affected by lupus and its direction is decided by our Board of Trustees and Members who are all people living with lupus or who have a loved one affected by the disease.

We have a responsibility to ensure that people using this community are not provided with unsafe 'advice' and therefore always encourage them to discuss any treatments/therapies/diets etc. with their medical team. We would never actively discourage someone from learning more about alternative/complementary therapies and it would be very rare for us to discourage someone from pursuing one of these treatments - but we do always recommend that it is discussed with the person's medical team so that they can have personalised, expert medical advice.

[overnighthearingloss in reply to Paul_Howard]

Ok.

Sorry not to respond sooner but the flare or cold or whatever I am in has floored me and I have been spending much of my time in bed asleep. I really did believe that you had sponsors breathing down your neck and discouraging talk of anything other than current approaches.

I've been recovering enough to get up then next day back in bed so this one probably is trying to stick around.

But here's what I have found. On days when I take spirulina which is a blue green micro algae product, the next day is the one with improvements. So what exactly is it.? It's a concentrated food source that was once discussed as being an ideal food source for astronauts. Yep. True. These days depending where you read it's either the most toxic substance on earth or a wonder food. I guess I must have the wonder food variety but I hate the taste. Preferring to make a shake with a spoonful of spirulina, a very ripe banana and topping up with nut milk. The sweet banana detracts from it's very distinctive taste.

But why does this seem to work every time for me. It is a concentrated source of vitamins and minerals and various amino acids. Just what an ailing body might need and what always seems to hit the spot for me. Its not a diet drink. As I say and as anyone who has the will to check can find, NASA had discussed it's use for space travel. I have been using It as a boost to my regular food, although my appetite has reduced at the moment.

I fully understand you don't want people going off Willy nilly on fad diets. I would strongly suggest that that was stupid as well. The basis of nutrition has to be good proper food as fresh and unpackaged as possible. I don't suggest anything less as far as i am aware.

But on the subject of food. Rightly or wrongly. Wrongly in my opinion, conventional doctors don't give anywhere near enough solid good medical advice. The big food campaigns are often proven to be misleading or bad advice that has probably been heavily influenced by one food lobby or another. I do not eat vegetable oils or margarines these days although we were all told they were the healthy choice. Why because they contain a high proportion of omega 6s which are known to be inflammatory in the body, What sort of fats do you believe industry uses in most of the manufactured products that are available? Read and you will see.

That to me makes perfect sense why eating a cleaner vegetable based diet is likely to provide more benefits. I didn't say vegetarian or vegan but our bodies need the nutrients supplied by veggies and may react badly to ingredients contained in other manufactured food choices. We need to get the nutrients contained in veggies from somewhere and if not from veggies the body is building up a deficit.

It has been documented by early doctors that nutrient deficits lead to all sorts of problems but with today sticking plaster approach of medicating away pain without understanding the root cause and dealing with that, often problems can be masked for a long time.

I hope that you do get the chance to follow up on some of the things I suggest.

But not from blindly following, instead by reading and understanding why I propose certain things. I often do not suggest an absolute link. That's for the same reason. Its important for others to do their own reading as through building their own knowledgebase they will be better placed to fight back against this condition and others.

Or to continue with sticking plasters that are masking symptoms but no doing nothing to cure their conditions.

I am not suggesting removing medications. But instead trying to nutifry bodies in the best way possible to build as many healthy cells as possible in damaged bodies. Your cells regenerate daily and building healthy cells is likely more advantageous than building weaker cells.

[Naz2005]

Hi thank you for giving me advise im

41years old always been stressed & depressed very negative person self conscious was in a abusive relationship lost my Dad nearly 4years ago got remarried last year to someone alot younger then me & i think i just rushed things he thinks the world of me but i feel as though we are worlds apart our thinking everything he don’t understand because Lupus & quite a few of my illness are not visible feel like a failure life style restricted compared to before i miss the old me dont bother with people or myself just lazy around in my pj think im blabbering on sorry xxx

[DJK99 in reply to Naz2005]

I understand Naz.. a lot of empathy for your situation (believe me). Well, I found getting a cat really helped... hes so demanding and loving at the same time I just had to get up and feed him for the peace! Life can be so very hard, I know. Iam 55 now and its taken me all these years to reconcile so much. One day at a time.. Id definitely get some more therapy with someone you can resonate with - are you in therapy now? Getting someone who really hears you and leads you to feel like its so worth going back, who can hold all that info you give them, who can hold you... is essential. Youll know when you find them. Do you feel you have that? Or are you still seeking? Please get back to your GP.. Do you drink about 2 litres of water a day? Dehydration can make you feel so unwell, and lethargic/in pain/fuzzy headed/irritable. And eat lots of fresh fruit and veg and good protein? Whatever your beliefs on this that can make you feel so much better... And a good multi vit/mineral - Solgar do a great one but theyre pricey - Holland and Barrett does a couple I swear by - Magnesium/calcium/Zinc combo - I have three a day... and their Busy Bee with Vit C. I stopped taking them for years as I was taking a pricey concoction by Welleco - but Ive gone back on the Magnesium as I was having truly dreadful cramps and this has got rid of them again... and also chilled me out a lot again. Please give it a go.. they have lots of offers on - you know, buy one and get another for a penny - or three for two. I also started taking Bach Flower Remedy Sweet chesnut... as I was feeling very despairing. It helped. You are worth it... you are a survivor.... well done. You cant help what happened in the past, but there are a lot of us out there... and I for one have been through the PJ stage - and (whilst Im currently in it right now as just finally had my bunions done after 30 years of pain and cant get my usual trousers on!) I can say you can get out of them Naz. Get some more help - better help - and keep reaching out... I read a ton of books too... they helped.. You are worth it. Every single day. Hope its OK to say all that. Big hug and let us know how you get on eh? Good. D xx

[Naz2005 in reply to DJK99]

Thank you willing to try anything xxx

[Dousey85]

Naz these feelings your explaining is exactly how I have been for the last 3 months, through amputations and dragged out diagnosis’s, my girlfriend and family have been by my side 100% and I’ve lost count how many times I have broken my girlfriends heart and told her to leave, I’ve called myself horrid names like freak, and flid and all sorts, telling her I don’t want to live this life so why should she.

And thank god she just tells me to shut up and stood by me more, I went to my gp and told them all this and how low my mood is and that I considered ending it all, he just told me to come back in two weeks and sent me home with a prescription of 400ml of liquid morphine. Luckily my girlfriend sat me down and let me empty all my feelings on to her, as hard as it is naz don’t push them away they will be a million times more of a support then any medical professional take it from me, if it wasn’t for my girlfriend and family I possibly wouldn’t be here to help you see what I’ve seen, and if you can’t talk to them then I’m here if you ever need to rant xx

[Naz2005 in reply to Dousey85]

Thank you so much xxx

[Dousey85 in reply to Naz2005]

Your welcome, I just hope it helps xxx

[Hidden]

Naz, I hate to say it but I'm exactly the same. The fatigue means I'm totally unmotivated and just want to sleep or read rather than be with my 2 teenage children. I tend to be active for 1 or 2 days and then sleep for 3 - and no I can't save my spoons for the next day. I have an organic mood disorder supposedly due to Lupus Anticoagulant so I take mood stabilizers and antidepressants. These meds add to the tiredness as well as the massive 8 stone weight gain in 11 years. Just be really open with the family and when you have the energy remind them that they're loved and give them quality time. Thinking of you xxx

[Naz2005 in reply to Hidden]

Thank you i have 2 teenage children at home who spend most of times when they home in they rooms but when they with me & sibling rivalry goin on im exhausted to even tell them

off xxx

[Hidden in reply to Naz2005]

Lol, they sound like my two, and you sound exactly like me. I went 8 days without having a shower last week, I sleep in my comfy clothes rather than PJ's so I look dressed. I'm not a smelly person and don't look like I've worn the same clothes for 4 days, lol. Don't worry about the little things, find ways to work around them, and put things into perspective. Kids squabbling is natural, it's how they learn to defend themselves in life. I let my two go at it when I don't have the energy but when I have some the only time I get involved is when it's gone too far or become really annoying.

My ex is 13 years younger and Turkish - utterly ignorant about Lupus and just thinks I'm lazy. It took 5 years for me to come to terms with the new Lupus me - I grieved badly. I haven't worked in almost 11 years, I used to be a teacher and loved my job.

Anyway Naz, encourage those around you to read about Lupus. Find a copy on the internet of 'But you don't look sick' or 'The Spoon Theory' and ask them to read it.

Always here to help Naz. Xx

[Hidden in reply to Hidden]

Oh I use a lot of wet wipes to keep things fresh and dry shampoo - sounds awful but sometimes the thought of a shower is just too much.

[Naz2005 in reply to Hidden]

Hi yes so true my hubby from pakistan they thinking mentality is total different women not allowed to be ill you get on with it drives me insane 😫😫😫

[Hidden in reply to Naz2005]

That's it. Out of hospital means back to work. I shouted at him a few times - I'm so tired, let me sleep! I can't think, tell me what I have to do!

i refused to be a martyr. In the end I knew I had to try to get rid of all the stress in my life, and I'm sorry to say he was the biggest one, so we separated. That was what was right for me, my children were only 2 and 6, I needed all my energy for them and I was happy to watch children's TV, leave toys out, and eat kids meals at 5pm, lol. My lifestyle was ruled by them and I didn't have to try to please both him and them. Children don't care too much about being tidy or dust either.

You have to find your own way Naz, and have a plan for the really depressed days. I call in the emergency psychiatric nurses if it's that bad, and my mum. Now the children are older I tell them that I'm feeling depressed and irritable so they should just leave me alone, but also behave themselves as I turn into an angry bear woken from hibernation if they don't. 😂

[Naz2005 in reply to Hidden]

😂😂😂

[Healthyheart1]

My daughter is exactly the same. Bless you both.