What's the point?

[Whippet_lady]

What's the point? This is no life. No sun. Maybe no computer or phone screens. Even light bulbs? Restricted holidays. Soon to be no hair. No spicy, acidic, overly sweet, sharp, rough, hard food. Can only start half the medication they want to give me because of coronavirus, which isn't doing very much. And if we ever get to the stage where I can take it the side effects sound as bad, if not worse, than the damn symptoms. Living in constant fear of what I might catch, when and where from. Having to explain or make excuses all the time because people don't understand, simply aren't interested or think you're exaggerating and feeling sorry for yourself. What sort of life is that? It isn't. There is no point.

[eekt]

Whippet_lady, I suspect there is at least one four-legged friend in your life who disagrees strongly with that, rub a fuzzy chin to find out?

There are dodgy docs who know little about lupus around, and mine is one...my last 'consultation' consisted of him shouting at me for 20 minutes because I had requested steroids to prevent further hearing last, as recommended by ENT...as this is the last in a long line of humiliations by him, it's a GMC complaint...I know, they don't do much...…..BUT during my 'consultation' he claimed the BSR guidance said all autoimmune treatment is to be deferred during Covid, which is a reading error (his grasp of English is very poor) and VERY wrong

HCQ is the baseline med as it's immune-modulating (that's why it's fine to take during Covid) and many people find it very helpful

Some people are improved by sunlight (I'm one! ) and the author of the BSR guideline told me if I'm not triggered by uV, then don't avoid it (that of course can change though, some folk become photosensitive later)...I eat the whole range of foods and have learnt those to avoid....even small amounts of the deadly nightshade family are fine in small quantities, except aubergine, eek!...my hair fell out and has grown back thicker and more lustrous

And try this explanation for folk who dismiss lupus: it's like Covid lifelong (though bear in mind there are folks like me chunter along mild and stable needing few meds!)

Anyway, contact the medical director of your hospital and ask for a second opinion...if there's only one rheumatologist, it'll be a different hospital and a decent doctor!

Stay safe, add a photo of your furries upside down on the sofa to make us all chuckle, keep posting and join the wolf pack working to keep bad medics at bay xxx

[overnighthearingloss in reply to eekt]

If you need backup for a complaint you could reference an article by Professor Linda Luxon and Benjamin Schreiber on sensorineural hearing loss. I haven't refound the exact article but this link may help send you in the right direction. It was in the Lancet or pubmed I think.

hearingreview.com/hearing-l...

Doctors are supposed to constantly review their knowledge base.

[eekt in reply to overnighthearingloss]

Many thanks for this, very useful, and I found a couple of research papers too.

My rheumy's knowledge base is a 20-year-old lupus book LOL! He was shouting at me 'it (SLE-related hearing loss) isn't in the book' and implied I was fabricating it! He's a joints, rashes and pleurisy man.. xxx

[Krazykat26]

Hi Whippet_lady 🤗💐

Firstly I'd like to welcome u to this wonderful community..u r not alone..there r loads of us n u must congratulate yourself for getting in touch n reaching out to us all!! 🤝

All of us have some kind of autoimmune disease n u will probably come to realise that although we have a lot in common we r all unique in the way that lupus affects us.

I was diagnosed in 2017 with SCLE which affects my skin..my life has changed dramatically as I'm photosensitive to UV n flourescent lighting..but I'm happy to say that after having started on a new drug at Xmas my symptoms have reduced so that I can function better on a day to day basis!! When I was first diagnosed I hadn't even heard of lupus..I had a fact sheet about it n I must say that I felt exactly the same as u do now..what's the point? How am I supposed to carry on living like this? I wasn't on the internet at the time either so I joined lupus UK n found out from there what it was!!

As soon as I got internet I joined this site n I have to say that I haven't looked back since!! We all live with lupus 💩24/7 n through chatting to people here I have found ways to make life more bearable n even made some lovely new cyber friends 🤗💜

If you're in any way similar to me then u have probably been experiencing symptoms for quite a long time..it was 8yrs for me..so a diagnosis came as both a relief that I wasn't going mad..n then grief as I realised that life was gonna change drastically..it's chronic illness..n there's no cure (at the moment) 🤞

U have a family n that in itself is tough with two teenagers..but u do have people around u who will want to help as much as they can.

Can I suggest that u Google spoon theory at some point..it's a lady called Christina (can never remember her surname) n she explains what it's like living with lupus in an easily understandable way..if u have a look at it u can then decide if u want to show your family..that's what I did with mine n now they have a deeper understanding of how it is living with lupus!!

U mentioned that you're on steroids..they can be pretty heavy in themselves one of the side effects being low mood n feelings of anger..with trying to get your head around a diagnosis too..you've got a lot on your plate!! 😔

So now u will learn how to become a lupus warrior coz that's what we r!! Welcome to the tribe!! 🤗🥊

This is a very supportive group of folks so anything u want to ask..ask it n you'll get weapons..ideas..ways to cope..a maybe a giggle along the way!! Just take time to let this all sink in n u will find a way through it..n we'll guide u through it..cyber hand holding is what we do best!! 🤝

Kat 🌈😽😽xx

[stiff19]

There’s two good replies there, which say it all , I hope you find the comfort in them 🙏

You say it’s a mess and yes life gets messy but we just clear the mess and keep it down, maybe not all at once but bit by bit, mess can seem overwhelming but tackled becomes clearer and more hands can make lighter work , you’ve come to the right place for a helping hand, which can help clear the dust aiding you to deep clean the crooks and crevices in time.

Since being here my mess is tidier 🙂 we can all work through the mess together, welcome whippet lady, fellow dog lover.

Best wishes 💐🌸🐶

[Hidden]

I second all that Eekt has said - plus wanting to add that there is more to existing well than the pleasures you have mentioned. I’ve had times when all the pleasures I took for granted have been taken away one by one by this disease.

However it’s incredible what we get used to over time - and for all that we lose, sometimes we also gain through other unexpected sources.

For example I’ve just been speaking on the phone to the practice pharmacist about what could be causing a truly disgusting taste and whether I should be taking more of my PPI or could it be sinusitis or dental perhaps? We decided that I should get my dentist to prescribe antibiotics from a distance as it’s likely to be a simmering dental abscess rather than my reflux.

I can’t floss because my fingertips have severe contact pain now. So I can’t tell if I have a gum infection or not but for me this stuff tends to simmer.

However I’ve found ways around these limitations over the past few years and dictate using the microphone instead of typing.

I can’t spend too long on computers as my eyes are too dry - so I listen to more radio and music. I can’t go out in the sun much at all but I’ve got a small exercise bike in my window which I pedal away to just now listening and singing along to a playlist of favourites.

Inflammatory fatigue and bowel issues, Raynaud’s and orthostatic tremor have ruled my life for so long that I’m used to not having much, if any, social life. It no longer bothers me because, as you say, few people understand the limitations we face. And I’d prefer not to have to explain or remind them. Dwelling on all I can’t do doesn’t help my state of mental wellbeing - focussing on finding ways around these limitations does!

The occasional phone call is fine. And when everyone I’m related to through marriage or directly - complains about the new Covid related restrictions they are facing, I can genuinely relate to them and at same time leave some strategic silences or just be quiet and listen until they realise that they are moaning about my life - minus the pain and all other health tribulations!

Anyway I found speaking to this practice pharmacist, a stranger, oddly reassuring. She was able to give me my latest blood monitoring results from the immunesuppressant I’m on.

Also the fact that she’s working from home and we had a brief chat about other non health things made me feel that others around the world are becoming more familiar with the limitations placed on me by my autoimmune diseases.

Sometimes, these days, that’s all it takes. And if I can be started on an immunesuppressant at a time of Covid then there’s no reason why your doctors should be telling you that you can’t? Phone, email, badger so that you get what treatment and help you need. It’s there - you just need to ask for help. Sometimes quite forcefully!

Best of luck

S7😊🌻

[Freckle1000]

You've landed at a horrible time to be diagnosed with lupus.

I've was diagnosed with the illness at 14 years of age - now 52.

The initial stage is the worst with higher doses of medications and side effects along with the uncertainty of whats going to happen.

Please dont loose faith that in time you'll have the illness under control and be able to lead a fairly normal and very happy life. A lot of SLE lupus patients spend much of their life in remission and feel healthy enough to lead a normal life.

Also - in time, once the illness settles - there are ways of taking maintenance doses of immuno - suppression - eg. taking some of the drugs like prednisolone at 4.00am - if you get up at 8.00am ( or later ) - or divide the dose up at these two at these times. It helps to sleep through some of the side effects. (I had one rheumatologist advise me to take pred before going to bed - along with sedatives etc. possibly not the best advice as pred replaces part of you're adrenal waking system)

I take most of my other classes of meds - going to bed.

With me its actually figuring out what meds are uppers and downers - and balancing the two in a timed way.

There are many tricks. The main and only thing is to keep taking them.

Eventually once you're illness settles you'll be able to reduce and probably eliminate a lot of the medications.

Also over time it will become way easier not to give a 'flying fig' about how people view you're illness.

You NEVER have to explain yourself to others regarding this illness.

Don't waste you're energy. If you explain to someone once - and they just don't understand it - or just dont want to bother undersatanding or empathiseing - its not worth cluttering you're mind with their ignorance.

Think of better things.

Dont loose hope. Things will get better. Just hold on and make it through this horrific patch.

You'll come out the other end way stronger than you're peers.

[cathie]

Sorry you're feeling like that. I hope you can find some sunshine

[Missie12]

Hey we are all here for you Lady xxx

[Teanna]

Hi, yes I know how u feel but there are worse off people than ourselves. I see no-one, yes I have a carer which breaks up the day, but at least she gets out. As for the Lupus, my Pharmacist is absolutely great, as I was worrying about the medication, but as he said, don’t worry I’ve got enough for you (mine are in a blister pack), also I missed 11 appointments because of the virus, but the hospital cancelled them. I do have a consultation with my GP every week, but it’s got to the stage where I’m really down, but life goes on. I’ve started quite a few hobbies and I started them when I became wheelchair bound. If u have a laptop you could do a course online. We are all in the same position, so please keep safe, my thoughts are with us all and the key workers etc.

xx

[Krazykat26 in reply to Teanna]

Hi Teanna 🤗

So glad to hear that you've got enough hand action going on that u are getting into hobbies n crafting!! Keep on keeping on lady!! 🙌👏🌈😽😽Xx

[Teanna in reply to Krazykat26]

Thank you , I’ve noticed that prices online have soared up, that’s greed.!!!!! So I’m thinking of making things for Christmas and birthdays and see how it goes. I’m looking for a team that could make other things, without getting together, but it’s getting some advice.

Take care, keep safe 🥂

[Jumper99 in reply to Teanna]

Can you sew? Have you a machine? If you said yes then you could make scrubs for nurses and doctors. A friend is doing that. They apparently provide the material and deliver it. Then you’d be actively helping the fight against the virus.

[Teanna in reply to Jumper99]

I can sew and I have a sewing machine, but I’m more of a cushion/pillow and art pieces. I wish I could machine garments I would defo help out. Thank you, keep safe.

Teanna

[Cathyan]

Hi Whippet_lady. So sorry to hear how you’re feeling. I don’t blame you. It stinks to be diagnosed at any time, and worse when all the risks are magnified by CV. If you’re just starting treatment I promise things will get better. There will be something out there that will work, if not perfectly, at least to make life better. Not everyone has a problem with sun/screens like I do. I know one sufferer who tolerates sun and became amazingly fit and cycled miles to work everyday and controlled her illness better as a result. I’m wondering how long it’s taken you to get a diagnosis. A lot of people spend so long trying to get one that they’re actually relieved when they finally get one. I know I was - the implications only sank in slowly over the years - but by then I was learning bit by bit how to manage it and changing my hobbies and lifestyle. It stinks more now - with CV - so I keep reminding myself overall I am less fatigued and symptomatic than I was 5 years ago because my meds are finally right for me. I get that you’ll have problems sorting meds during CV because consultants have been advised not to start new things. Keeping fingers crossed this issue will be resolved soon. Take care and hang on in there.

[Princerogers777]

Hang in there,i feel that way often but ya gotta just try n stay positive, say to yurself today is gonna be good, im going to have nourishing foods, do a little yoga or meditation on youtube, get a little sun out back doin sum gardening or plant a seed from something u have at home. Listen to yur favorite music ( prince or old 40s music like frank sinatra is mine) , dont blv all u read, dont watch news its scary 4 me, feeling hopeless is no fun but fight it , theres hope hun, god has a plan im not religious but i know things happen 4 a reason & he has somethin to do with it. Soft hugs n prayers to u xxxxx

[Princerogers777]

I also am taking meds that have death as side effect scares the hell outta me but if i dont take them i feel im doomed either way ugh i feel u, yea dont eat this, no sun , change yur diet, jus take it day by day , try yur best, keep movin, ppl dont understand true always have to adjust ure lifd to the disease, jus b cautious dont stop living , take care of yurself,

[Wendy39]

Hello Whippet_lady

I think we can all relate to your post and those feelings on diagnosis. It's not an easy time.

My diagnosis was a relief, as someone said above, you begin to think you are going mad, so I was glad that there was a name for my symptoms and that something could be done.

I was 39 when diagnosed. My three children were 9, 8 and 5 then.

The last 6 years have been a roller coaster ride. So many emotions. It is like grief to begin with. Although I was relieved that something could be done to make me feel better, I soon realised that this was chronic, life long and no cure. So I think you grieve for your old self. And this grief never really leaves you - it can strike at any time. BUT you do adapt, you get used to the new you and you get on with it. Taking each day as it comes. I'm not saying it's easy. Far from it. But you do find a way to cope.

I think my husband and children drove me on. Gave me a reason to get up. I wanted to get my lupus under control enough that I wasn't in bed all of the time and neglecting them. There has been guilt when I have been ill and had to go to bed. There have been days when I've had to stay in bed all day, for days at a time. There have been flares. But I am here! And my family has survived too.

Our children are now 16, 14 and 12. They've kind of grown up with me having lupus and they get it.

By the way, I am very photo-sensitive. But I have found various coping mechanisms. SPF 50+ clothing. Better sun creams for my face. Hats. Parasols. We even go abroad now, we've all adapted to taking things slower on holiday for my sake.

So, I guess I am saying. You've only just been diagnosed. It's totally overwhelming. But you will get through this. Day by day. Don't be hard on yourself. Don't push yourself. Take your time. Make time to rest.

You're off to a great start by finding this group. These people have been my rock on many occasions and they have educated me in my disease and how to handle the doctors too.

Take a look at the LUPUS UK website. There's so much information there. There are also DVD available talking about diagnosis and how to explain it to your family etc.

Website

lupusuk.org.uk/

Publications - information on every aspect of lupus and how it effects your body, including photosenstivity.

lupusuk.org.uk/publications/

DVD for those newly diagnosed.

lupusuk.org.uk/newly-diagno...

I am more than happy to answer questions here or message me if you'd prefer.

We do all understand. We've all been through it. You will come out the other side of this dark and emotional time.

Wendy

[WinterSwimmer]

You will find the point - just hang in there until you do. When I was diagnosed 13 years ago (15 years after the date I got ill) - I felt the same as you. What’s the point? I was angry, resentful and thought - why me?

Then, I was a university lecturer, with a meaningful job and a bad pool habit.. Things got bad and then I was nothing. But now... I swim in cold clear green water nearly every day. I have lovely friends and feel I am a nicer, more sympathetic person than I was before lupus. I listen better. I hear more. I pay attention.

Just hang on, Whippet lady. Just hang on. This is an awful time to get diagnosed and an awful time to begin your lupus journey. But you can do it. Deep breaths. It may be a year or two or three or four - but there is light. I promise (giving you the advice I would have spurned at the time). Things will get better - just not instantly. x

[svfarmer]

Really sorry your feeling so down at the moment I think it’s very common right at the beginning of a lupus diagnosis to come to terms with exactly what your dealing with - for me I had to give up my job as all the joint pain I had plus the extreme fatigue I was in a real mess, I was put on steroids and Methotrexate and took quite a while to get all my symptoms under control - I found it very difficult to come to terms with I just didn’t have the energy to rush around like I used to but with time you do adjust- I still don’t work because of the fatigue but we bought a dog and she has turned my life round and bought me so much pleasure. Sending you big 🤗 hugs- you will get through this xx

[overnighthearingloss]

Turn off the TV news as it's all doom based. Make more considered viewing choices. Including subjects that interest you or make you laugh.

[maggielee]

Hi Whippet,

If you hadn't written how you are feeling right now, I could not have shared the many kind thoughts & encouragement by so many to you, it really helped me too. Thank you..

Sometimes it really hard to admit hard days..and I've been pretty blue lately too. Allergic to sun, been indoors for months, & not feeling well, really hungry (another story)...

I had a chat with my sister, who could relate to my sad morning & she made me laugh...it really helped to talk...

I then did something for me. I put on my hat, cotton gloves, my sun jacket with hood, long cotton scarf around my neck, sunglasses, so I was covered from head to toe & went for a long walk. I realised I been too cooped up inside & missing air & sun & exercise (gentle).. I brought some music too.

My treat was when I rested on a grassy hedgebank on the side of the road, suddenly a loud blowing sound came from behind me & it was a big beautiful chocolate brown/black horse. 🐎. He walked from were he was just a speck in the distance to right behind me..I gave him some long grass & off he went...(the nettle stinging reminds me of him)....

Welcome to our worldwide collection of folks who do understand & wish you well. ml 😄

[Kevin53]

Hi Dear Lady. There is lots of support here. Please join us and find the path. You will be surprised. Sincerely Kevin Chair Lupus UK

[Olderkitten]

You sound frazzled and rightly so, lots of pressure to deal with everything if your alone what with trying to get food and meds and what not. Isn't there anything on TV to watch or books to read? I know it's repetitive but right now there's really nothing you can do until this covid19 is done. If your not getting the medication your supposed to have then contact your doctor, I'm sure he or she will want to know. I know this isn't what you wanted to hear but for now that's all they is. Things will get better. Hang in there ok.

[Paul_Howard Partner LUPUS UK]

Hi Whippet_lady ,

I'm pleased to see that you've received loads of comments and support from other members of this community already. Please continue to post and make the most of the lovely people here.

Have you been experiencing severe light sensitivity with your lupus? Many people have to protect themselves from the sun, but some do unfortunately also react to artificial lighting, especially those that emit UV or are more from the blue spectrum. There are some things you can do to help protect yourself, such as getting certain LED bulbs and special filters for blue-light emitting screens. These tips and others can be found in an article on our website - lupusuk.org.uk/coping-with-...

It is an unfortunate time to have been diagnosed. Is it hydroxychloroquine that you have started? How long ago did you start it?

Things can get better! I hope that other members of this community can help reassure you of this.

Perhaps it would be worth speaking with your GP and seeing whether they can arrange a referral to a counselling service? We have an article with some information and advice for coping with depression and anxiety at lupusuk.org.uk/coping-with-...

[eekt]

This one's called Love is in the Eyes:

pinterest.co.uk/pin/3518444...

xxx