A link to somebody who truly understands us - LUPUS UK

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A link to somebody who truly understands us

Spotty-ewe
Spotty-ewe

The link below is of Miranda Hart talking about chronic illness. It came to me via Cuttysark and Misty, who are still suffering after their Pfizer vaccines, and we all agreed it should be posted for all Lupies to see. It is so heartwarming to hear somebody who truly understands how we feel. It makes me feel like the wee hamster being supported and treated by her understanding pals who will go to any lengths to show their love and understanding..

Love and hugs to you all. 💕🤗😘xx

youtu.be/kIA61vD1nks

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This is so moving💜

Spotty-ewe
Spotty-ewe in reply to daisydayz

🥰🥰👍🏻👍🏻🤗😘x

Thank you for posting xxx

👍🏻👍🏻👍🏻🤗🤗😘🌷x

Fantastic Spotty, this is such a heart, and soul video. I am showing this one to all my friends, family, and DOCTORS. Now, those hamsters are just so darn Cute!!! Could you send off a copy to me, as so I can share this one with my other friends, and family. Those 3 amigos" are adorable. Like minny trapeze artists!!!:) Making that my new computer wall paper , as so when I turn this thing on, I see that. Smiles for miles dear Spotty. Thank you very much for this great post! Sorry to read of your friends, suffering from the Pfizer vaccines. I pray all will be well for them, and all of us.. Many many prayers, blessings, and Love to you and all. Thestormy sunshine:) Xxxxxx

Spotty-ewe
Spotty-ewe in reply to thestorm

Thank you so much for your kind remarks and prayers as always Stormy. I’ll send you the picture of the 3 amigos straight away. It is so cute isn’t it and meaningful. Love and hugs to you, hubby and the gorgeous Storm. 🤗😘💕

This should be a compulsory watch for every hcp and the Dwp.Love the pic ......how do they not dislocated their joints lol 🤔🤣 xx

Totally agree SML it should be compulsory. 👍🏻👍🏻 The wee hamsters must be double jointed. 🤷🏼‍♀️ They are so cute. 🥰

What a gorgeous picture- really brightens the wet morning I’ve awoken to - I will have a look at this link right now , thanks for posting and sending big hugs 🤗 to you x

Spotty-ewe
Spotty-ewe in reply to svfarmer

Thank you SV. Yes, I found the picture so uplifting and meaningful in how loving and supportive they are to each other - just like us on this forum! I’m sure you’ll enjoy the link. Love and hugs right back to you SV. 🤗😘xx

Thank you for posting a must watch by everyone. Lots of hugs🤗🤗🤗 x

Spotty-ewe
Spotty-ewe in reply to JCZW

👍🏻👍🏻🤗🤗😘😘xx

Best wishes to cuttysark and misty 🙏Love the pic 😍 Miranda says it all , as does spanielmadlady, hcp need this understanding , the human element will make their jobs easier and our lives supported a tad.

😘🤗

Spotty-ewe
Spotty-ewe in reply to stiff19

Completely agree with you Stiff. They could learn from the hamsters who stretch themselves literally to help and comfort one of their own. 🤗😘xx

stiff19
stiff19 in reply to Spotty-ewe

Yes they could learn a lot from listening to the reality of living with all too 🙏It’s all about the science 🤣

Hope you’re feeling better 🙏

😘🤗

Spotty-ewe
Spotty-ewe in reply to stiff19

Much better thanks Stiff, but hubby tried to make a phone appt for me this morning with either of the 2 GPs that I see and was old 1 is on holiday until next week but has no phone appts left available when he returns, and the other has no phone appts available until next Monday! Hubby told the receptionist that this was ridiculous, and I won’t repeat what he said when the call ended! 😂😂 Hope you are trundling along okay too lovely Stiff.🙏🏻 Love and hugs, 😘🤗xx

stiff19
stiff19 in reply to Spotty-ewe

Oh spotty it’s a nightmare isn’t it. I emailed neuro secretary too and got a reply saying I’m away until 28th. Hubby is right it’s all ridiculous that you’re told yes everything working as normal and it’s far from it. I can imagine I say the same as your hubby 🤬 it’s soul destroying and health 😩 I wish I had the answers 🤷‍♀️ Take care and stay safe 😘🤗x

Spotty-ewe
Spotty-ewe in reply to stiff19

Oh no, not your Neuro’s secretary too! 😡 Why are they all on holiday? Our GPs seem to be on holiday regularly! 🙄 I don’t understand it. 🤷🏼‍♀️ Anyway, I’m glad you contacted them. We have to keep on at them to get anywhere, but they are making that harder for us to do. 🤨 Just as well we have our crafts Stiff to take our minds off them! 😉 🤗😘x

stiff19
stiff19 in reply to Spotty-ewe

I don’t understand it, we’ve not had huge numbers here with covid but certainly feel it’s used as an excuse for a lot. Even sainsburys failing to add my nectar points was blamed on covid, it’s an automatic process 🤣🤣🤣🤣🤷‍♀️It’s Definately hard and just annoying when told to contact them as normal when unwell 🤷‍♀️ I hope you can get something sorted.I think we will lose the nhs, it’s gradually being phased away.

Yes good job, how’s the knitting going?😘🤗xx

Spotty-ewe
Spotty-ewe in reply to stiff19

Yes, Covid seems to be an excuse for all sorts nowadays . Hubby was furious on the phone again this afternoon trying to get through to some automated voice continually saying “ sorry I didn’t get that. Can you say it again?” Each time hubby’s voice went up until he shouted at it and eventually he got a human to speak to! I really HATE phoning and experiences like that remind me why! 😂I’ve finished knitting a second landscape/sunset scene but as I used different thicknesses of wool it goes in and out a bit at the sides so might need to be mounted onto a stretcher. 🤷🏼‍♀️ I’ve just started a third landscape although I might make this one into a cushion cover or something like that. How about you Stiff? What are you working on? 🤗😘🌷x

Miranda Hart = Hero 🥰

PS cuttysark and @misty I'm so sorry to hear you're both suffering! I really hope you feel better soon!!!

👍🏻👍🏻😇🤗😘xx

This video is great! Honest and sincere without sentimentality or over emotionalism and spot on when it comes to describing the life changing effects of chronic illness and the judgements others have of us or worse perhaps the judgements we have of ourselves. And yes, everyone is a hero of their own life.

Spotty-ewe
Spotty-ewe in reply to Neriah

So true Neriah. We are all warriors 🗡🛡🤺even if we don’t realise it. 🤗😘xx

stiff19
stiff19 in reply to Spotty-ewe

She obviously has experience of chronic illness to have such understanding, I wonder what her problem is 🤷‍♀️ I call my daughter Miranda as she’s a big tall girl 🤣🤣

Spotty-ewe
Spotty-ewe in reply to stiff19

Spanielmadlady discovered she has endometriosis, agoraphobia and anxiety. Poor soul. Miranda is a lovely name so I’m sure your daughter won’t mind. Much better than Matilda! 😂

A friend sent me this clip and this could only be written by someone that truly knows. I hope Miranda is ok, I wonder what she is living with🤔 🤗hugs to everyone that needs it. X

Spotty-ewe
Spotty-ewe in reply to Muff20

👍🏻👍🏻🤗🤗x

Endometriosis, agoraphobia and anxiety x

How did you find that out SML? That is horrible for the poor soul and yes, she’ll have been in her own lockdown long before the pandemic started. The poor soul. No wonder she fully understands. 😘x

Spanielmadlady, I didn't know. That's alot to cope with 🤔 we all live our own battles.

There was an article. It has prevented her from doing some things.i think she gave up call the midwife because of it but dont quote me. X

Ah that's lovely thanks for sharing. I hope she's getting whatever support she needs.

I hope she gets the help she needs too. 🙏🏻 She’ll probably share with us one day what her problem is as she hinted she would. Keep safe.🤗xx

Thank you for the link. At last someone who really understands the restrictions of chronic illnesses! If only people understood this. It is true to compare the restrictions of having a chronic illness to being in lockdown... I have felt this for years.

Spotty-ewe
Spotty-ewe in reply to JGBH

Yes, I must admit going into lockdown didn’t make too big a difference to my life. We always feel in lockdown don’t we, never able to commit to being somewhere on a certain date at a certain time because we don’t know how we’ll feel then. People who don’t understand think we are being difficult or being a drama queen which is totally unhelpful. But never mind, there are some folk like Miranda out there who do completely understand and are trying to make others aware of what we go through. 👍🏻👍🏻👍🏻 That warms the cockles of my heart. 🥰 Take care JGBH. 🤗😘

JGBH
JGBH in reply to Spotty-ewe

Spotty-ewe, Thank you for your warm message. It’s so difficult living with chronic diseases... so difficult keeping positive when one feels one’s life has been put on hold... until the end of one’s life. There is also, in my case anyway, that one feels so useless... not being able to carry on with simple things like gardening, which I used to enjoy so much... not being able to go walking anymore, to exercise anymore. It would be so helpful if people who are blessed with good or reasonably good health would really understand the difficulties we face everyday. However, I am aware that one can only truly understand any situation when they experience the same problems.

Keep as well as you can. Keep safe. 💐

Spotty-ewe
Spotty-ewe in reply to JGBH

I’m so sorry to hear you have lost the ability to do so many things you loved. Luckily I haven’t quite reached that stage yet, but I do feel for you JGBH. But you are invaluable on this forum - your support, understanding and sharing of your experiences will always be appreciated by the rest of us. 👍🏻 Keep safe and warm JGBH. 🤗😘🌷x

JGBH
JGBH in reply to Spotty-ewe

Spotty-eweAgain many thanks for your kind reply and of course your understanding. Yes it’s so difficult losing one’s independence... I was so active, never stopped but for the past few years the illnesses have taken their toll.

I know I am not the only one and some people suffer even more. I am 74, 75 in May... and I live alone, my family live in London and the south east so far away, so that’s very hard. No visits allowed of course... I feel lucky we can Skype and video chat.

Your forum like many others is extremely supportive and helpful. Thanks for that.

Take good care. 🥀🌺🌼

Spotty-ewe
Spotty-ewe in reply to JGBH

That is hard being on your own as well as losing your independence, but thank goodness for Skype, Face time and video chats. It really helps to keep in touch with loved ones. I am 66 in July so only 9 years behind you. Keep in touch on the forum. We are all here to help and support each other. Look after yourself JGBH and keep safe and keep smiling. 🌹🌷🌹🤗😘x

JGBH
JGBH in reply to Spotty-ewe

You’re so kind. We all deserve to be “looked after “ when feeling low and frustrated by what life throws at us. You’re still a spring chicken!

Old age isn’t terribly exciting but we don’t have an option but to keep on going.

Indeed Skype etc are wonderful to keep in touch with loved ones . 😀

Spotty-ewe
Spotty-ewe in reply to JGBH

Haha. Spring chicken? More like an old boiler! 😂 It is true old age isn’t great, but the alternative is even worse! 🤣🤣 So we’ll need to just plod on and make the most of it. This forum offers freindship, advice, support and a lot of fun. So I hope to see you here again very soon. 🙏🏻 Take care.🤗😘🌷🌹🌷xx

stiff19
stiff19 in reply to Spotty-ewe

The older ones are made better and last for longer 🤣🤣👍

Spotty-ewe
Spotty-ewe in reply to stiff19

👍🏻👍🏻😂😂😂 I hope you are right!🙏🏻💕🤗😘x

JGBH
JGBH in reply to Spotty-ewe

Indeed we need to have a good sense of humour... and appreciate the little things. Agree the alternative to old age is not at all great... so we’ll hang up here a while longer. Take good care too. x🐥🌷

Spotty-ewe
Spotty-ewe in reply to JGBH

Let’s hang together 😂😂 🤗😘💕x

JGBH
JGBH in reply to JGBH

Good idea! ğŸŒž

wow, wow, this had me in tears, sobbing in fact, somebody who is nearer to understanding what we go through 24/7 but it also brought home to me , just what I go through, possibly with out realising sometimes as I have done it for over 28 years now!! Please do listen, bless you Miranda xx

Spotty-ewe
Spotty-ewe in reply to Poshcards

Yes, it is just a way of life to us who’ve had a chronic condition for many years like yourself. It is so heart-warming to know some like Miranda who understand see us to be the warriors we are. Stay strong and safe Poshcards. 🤗😘x

Thanks so much spotty for posting this so beautifully on our behalf. I'm so glad it's had such a good response( your cutie pic is so adorable) and given us all such a boost!. Appreciate too the good wishes from you from members too. Keep well and safe as possible. Xx💕😊💕

P.s cutie pics will come back when I'm better from the vaccine. Xx

Spotty-ewe
Spotty-ewe in reply to misty14

It was a pleasure and an honour to post the link to Miranda on your and Cutty’s behalf. So good to see you on the forum again Misty and hoping you’ll be back with your cutie pics before too long. 🙏🏻 Rest up, take good care of yourself and we’ll all be looking forward to your posts once again just as soon as you feel up to it. So pleased you enjoyed the wee hamsters, and just like them remember your Lupie pals are all here to cheer you and help in any way we can. Love and hugs. 🤗😘x

misty14
misty14 in reply to Spotty-ewe

😍✌️❣️🌈🌟🌼🌺🌻Xx. Thanks so much spotty for such a lovely, touching message. Keep well and safe. Xx

Spotty-ewe
Spotty-ewe in reply to misty14

🥰🙏🏻💖👍🏻👍🏻🌷🌹🌷🤗😘x

I found it Helen, thanks for your email to look for this post, I love Miranda Hart, it’s so reassuring to have someone like her highlight our plight, I know she ‘gets it’ because she’s suffered too, it makes us feel a little less alone, I almost cried listening to her, everything she says is spot on.Thank you Spotty-ewe for the post and the gorgeously super cute picture 😍🥰 🐭

I hope you start to feel better from the vaccine soon Helen, sending you warm healing big hugs 🤗 🌸xxx

Hi Diane, so pleased you found spotty' post. I cried too TBH at listening to Miranda's video. Isn't it true you have to experience something first hand to truly understand. I'm so pleased too the video has had such a good response on here. I do hope your having a better week. Have just spoken to my GP who is happy for me to do 15mg steroids for a week as Rheumy's previously sanctioned this. So pleased. Hopefully soon now I will be much better. Awful day today going for bloods. I'll be in touch next week when better. Thanks so much lovely for your good wishes.

Have a safe and well weekend. Big hugsXx🌺💕🌺🍀💕🌺🍀💕🌺

And you my lovely , you take care and catch up when you’re feeling a bit better , I do hope the increased steroids help you, I’m pleased you can do that for a week. Big hugs 🤗 💕🌸

Thanks so much diane lovely. Take care too. Big hugs. Xx🤗🌼🤗⚘🌼

Thank you for posting this utube clip .

🦋❤️

👍🏻👍🏻💖🤗😘🌷x

Miranda is talking generally about anybody with a chronic illness and only hints that she has one herself. Spanielmadlady researched and discovered she suffers with endometriosis, agoraphobia, and anxiety, so although she doesn’t have Lupus she does truly understand how we feel. Hope this helps.

How narrow minded you are.for your information she suffers from chronic illness herself .i find it offensive that you think she has an ulterior motive...does that mean all of us who speak of chronic illness have one as well ? illness knows no barriers but if it bothers you so much why not find and upload a video yourself .........😡

Well said SML. 👏🏻 If Miranda is articulate enough to express what so many of us are feeling with Lupus, or any other chronic illness, what relevance is it what race or class she belongs to?

Maybe that's the real problem spotty....jealousy of been so articulate.

I think you might be right! 🤗😘x

Do it then if if bothers you so much instead of moaning about it ..so if I had written those words and got miranda and the singer seal ( google him if you dont know who he is) to read them in a video what would be the difference? And what difference does it make that she doesnt have lupus ? She mentions it in the video along with other illnesses. It doesnt matter who speaks about chronic illness if they have experience of it.

P.s I m middle aged white British and Iive in a stone terrace house up north.i have lupus and lupus nephritis oh and sjorgens. Oh silly me nearly forgot I also have hashimoto's and PA 🤦‍♀️ .does that qualify me to speak about chronic illness ?

Hmmm most probably not..... no doubt I'm too old,too lower class,to far up north and not a celeb .

I guess if I didn't have lupus I wouldn't qualify either even though PA,hashimoto's and sjorgens are all auto immune chronic illnesses.

You could never be anything other than wonderful. Not old, certainly not lower class and most definitely a celebrity xxx

Spot on Cecily! Xxx

Nope .... I mean narrow minded people As I said to bexbee if it bothers you so much do it yourself. It doesnt matter whether you are black,white or green with pink spots chronic illness affects us the same and it doesn't matter who speaks out about it.

There is nothing stopping them from uploading their videos or posting their own experiences either

Hi SML, I hope you aren’t having a go at me regarding the spots! 😂😂 Just back from my Rheumy appt and he was very good. I had a huge list of things to discuss (11 on the list) which he ended up taking off me for his files. He’s referring me to Ophthalmology, Neurology and Physiotherapy and helping with some other issues. So pleased with that. Just have GP appt now (after 2pm). Hope you are enjoying your day. 🤗😘xx

Oh I am so pleased for you Spotty. A productive Rheumy appointment is like rocking horse 💩💩 I would do a happy dance for you but I have cellulitis and would probably fall over. At long last someone has validated your pain and done the referrals you need. Celebrate with something delicious 🍰🍫🧁🍧. I don’t know what I missed here but glad to see SML has supported you. The video shows someone who has a deep, experiential understanding of life with chronic illness. Regardless of what type of chronic illness the impact and life limitations are the same. Xxx

Aww thank you Cecily. It was indeed a productive appt and so was my GP appt. Chocolate and biscuits have been used to celebrate over a lovely refreshing cuppa. That revived me a bit because I have to confess I felt rather exhausted after the 2 appts. Just like busses eh? Either none at all or 2 come together!

Oh yes, both SML and later Stiff were as shocked and incensed by a couple of people’s critical and prejudiced remarks they kindly said as much. It is SO good to know we have special friends on here! 🤗😘x

Exactly, it is such a special place. When we face so much prejudice, disrespect and misunderstanding from society as a whole, it is shocking to get it from this safe space. We can disagree on things but never to cause offence or distress. I am truly sorry that you had to go through that lovely. Unwarranted. Huge Cwtches xxx

We know about melanie sloan thank you ...those on the forum at the time were invited to contribute and take part

All life matters, the video was highlighting chronic illness suffering, No discriminations or discounts and no she didn’t say she had lupus but an understanding of chronic illness of which lupus is one of many but inclusive. Chronic illness does not discriminate neither does this forum , so if any person, including a white middle class celebrity has the empathy to help comfort sufferers with her understanding to their sufferings, they are surely welcome. There needs be more understanding and you do not have to be a sufferer to understand, indeed do all docs need to have lupus to understand it. I find your reply very discriminatory if you feel class and colour are relevant and highly offensive. No one is ignored here, the same as nothing is directed at any specific ‘group’ other than sufferers .If you feel the BAME group need highlighting then maybe take that upon yourself. Can you point out the part in the Miranda video where she was excluding anyone please as I can’t find it?

Spotty-ewe
Spotty-ewe in reply to stiff19

Totally agree Stiff, and very well put. I have said something very similar to Bexbee. I hope you are keeping as well as you can be and still enjoying your crafts? Love and hugs. 🤗😘x

stiff19
stiff19 in reply to Spotty-ewe

Yes ok thanks hope you are too 😘🤗xx

Well said Stiff 🙌 xxx

Such a lovely video, thank you for sharing Spotty-ewe!

Thank you so much for your positive attitude IMT. So glad you enjoyed the video. 🤗😘x

Sorry for the delay in getting back to you properly. I have been preparing for and attending a lengthy Rheumatology appointment this morning for my SLE and other issues. Please correct me if I’m wrong, but you come across as somebody with a big chip on your shoulder which makes you confrontational and defensive. You are also prejudiced against white and middle classed people. That is not what this forum is about. We are all here to support and care for each other, offer advice and share experiences, and have a giggle along the way. But most of all we are here to offer love and understanding to each other regardless of skin colour, class, age, gender or anything else. If this doesn’t suit you I’d think carefully about whether this forum is for you. If you know of BUME Lupus sufferers who the rest of us might benefit from listening to, why not post them instead of criticising what I’ve posted which was put up to bring comfort to those of us who often feel nobody, outside of this forum, understands us.

👏🏻👏🏻

Hidden
Hidden in reply to CecilyParsley

🤷🏽‍♀️!❤️

Hidden
Hidden in reply to Spotty-ewe

🤷🏽‍♀️.

Spotty-ewe
Spotty-ewe in reply to Hidden

Sorry Fay, you have come onto this post after an upsetting incident and a few messages have been removed as a result so I’m not surprised you are confused. Welcome to the forum and I hope you enjoyed the video of Miranda Hart who understands what chronic illness is all about. Hope to see you on forum again and please feel free to comment if and when you like. Take care. Xx

Why not post one of the BAME celebrities speaking about Lupus and how it makes them feel? We could all benefit as Lupus knows no bounds as far as race, class, age, religion, politics or anything else goes. It has affected everybody from all walks of life.

That’s exactly why I posted one! Somebody without Lupus who truly understands what we are going through.

Black united sounds the best to me. Sorry for the genuine mistake but your reaction is exactly what I mean. Confrontational. My Rheumy is Nigerian, and a nicer more caring man I couldn’t meet. I don’t think for a minute he would approve of your attitude.

Thanks for that I am a lupus sufferer and do know these things. Its not about whether someone is patronising it's about someone's right to talk about chronic illness which some people think that because she is white middle class celeb she has no right to do

We are here for everyone. Let’s work together to improve the outcomes for all with Lupus and autoimmune conditions. Let’s be positive, supportive and compassionate 🙂. Best wishes Kevin

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