For all of you who are struggling ❤️❤️❤️ - LUPUS UK


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For all of you who are struggling ❤️❤️❤️

CecilyParsley profile image

This is very apt I thought. I send you love and huge Cwtches xxx❤️

69 Replies

This is lovely, prompted a little cry! Wise words indeed. Hugs and cwtches back. How are you doing, Cecily?

I am so glad you like it. The daughter of my beautiful friend Jo who passed in January from Covid posted this. They had a celebration of her life on what would have been her 57 th Birthday. Her daughter has just got engaged and found that she is expecting twins. Her Mum was a twin so she feels it is a beautiful sign. Jo would have made the very best Nanny, she lived for her four children. I am getting there thank you, just quite depressed at the moment. How are you doing? Xxx

Hello Cecily. So sorry to hear about your friend. What a sad time, but how lovely that her daughter is expecting twins too, as if her mum is watching over her. I'm sorry you’ve been feeling down and hope you feel better soon- life with health problems can feel relentless at times, can't it? I managed to invent a new word by accident yesterday for how I was feeling- gropey, a combination of grotty and ropey! I'm ok, thanks, just restarted Mycophenolate after 18 months off it, and briefly trying methotrexate. Hopefully it will kick in after a few weeks. Also started Mepacrine, which is new to me. I've been warned it might turn me yellow! How are you doing with the dreaded Colchine? Is it any better taking it every other day? Xx

Hi Choccy, oh bless you that is a lot of change. I hope your new regime helps you. Gropey that’s hilarious 😂. I am going to try the Colciccine this weekend because my IBS has been dreadful this past week. Had I started them I would be convinced they were to blame so hopefully I can give it a real try. At least I have enough meds to make the 3 in 1 mouthwash for the next year or so xxx

Lovely Cecily thank you and just what I needed to encourage me to keep fighting the good fight! I also enjoy Still I Rise:

“Does my sassiness upset you?

Why are you beset with gloom?

’Cause I walk like I've got oil wells

Pumping in my living room.

Just like moons and like suns,

With the certainty of tides,

Just like hopes springing high,

Still I'll rise.”

And from time to time I also think of a quote by Brené brown - “if you aren’t in the arena also getting your ass kicked, I’m not interested in your feedback” 🤭

Big hugs xx

What fabulous quotes. The first one reminds me of the theme tune Darker from Black Earth Rising. Magnificent. I have not heard the second one . Thank you so much for sharing xxx

Such true words ♥️ ♥️♥️

How are you doing lovely? Xxx

I’m doing ok Cecily - got appointment to see the anaesthetist next Tuesday and hope that the opp can be done the week after - is your knee a lot better now ? Xx

That is good, I hope the pre op assessment goes well for you next week. My damned knee is giving way all the time. I have found myself headfirst on the settee and the bed so I am having to use my stick indoors at the moment and not allowed to pick up anything heavy in case I crumple like an empty crisp bag lol. I am a bit down so have a day planned out with the lovely and long suffering Rosemary on Friday. I have even bought new eyeliner ready whoop whoop. You take care xxx

Oh no sorry to hear that , thank goodness you landed on something soft, it’s no wonder your feeling down with everything you’ve been dealing with and what better than having a day out with a friend , I’m sure you will look beautiful with your new eyeliner, hope you have a lovely day out- you so deserve it 💕

Made me stop in my tracks, and have a good, cry. Thank you for the journey, and so many here have to remember these words, to share with those who do not know us as well.💖 Many prayers, and blessings, Thestormy sunshine Xxxxxx

Oh Stormy I never meant to make anyone cry. I am so sorry. How are you beautiful soul? And how is the utterly gorgeous Storm? Xxx

Your post gave me the cry on the shoulders I needed. It was a good one. Those words touched my soul dear one. Thank you. Stormy is a lean mean shedding machine, LOL.... I am still under care, and awaiting much medical intervention. I hope to post soon. How are you doing. I am not here to much ,as health prompts my many days that blur together. I miss everyone. Your post caught my one good eye.... Love Thestormy sunshine.....

Good tears are acceptable then. Big hugs to Storm and gentle Cwtches to you and your one beautiful eye. You have so much joy in you despite how you suffer. It is infectious. I am ok, just a bit low. Look after yourself and I hope that you receive the care and treatment you need. Much love Stormy Sunshine 🥰🌈🌞🌻🌹🌼🌷🌸💐🌺🪴🌳🌴☘️🎍🌲🐾🐾❤️

Touched my heart at a perfect time. Thank you for sharing this!

CecilyParsley profile image
CecilyParsley in reply to TwoH

My pleasure. I hope that you are ok? Xx

TwoH profile image
TwoH in reply to CecilyParsley

Yes thank you! It’s just a combination of all things where you try to keep going but you are just tired. Certainly not giving up by any means but it can be overwhelming at times and this was a good reminder of all we carry.

CecilyParsley profile image
CecilyParsley in reply to TwoH

I understand the burden of our ill health becomes overwhelming at times. Thank goodness we have this forum to support one another. Take care of yourself xx

I needed that today, thank you!

You are very welcome. I hope that you are ok? Xxx

Yes, not to bad thanks. I'm recovering from my second Pfizer jab. I had proper rigors two nights ago. Also I had my bestie and her daughter come and visit from Wales for two nights. They are so easy to entertain. It was wonderful to see them but boy am I tired!

I got to have catches with my Goddaughter though so it was wonderful.

Nutella and banana pancakes went down well! X

Oh how lovely. Welsh people give the very best Cwtches ( but I am biased). Who would not love Nutella and banana pancakes too yummy xxx

Thank you for this Cecily great timing 💜

I’ve had a good declutter of some contacts for some of these reasons. I no longer feel I have a weight on my shoulders. So it was meant to be! Sometimes you just outgrow people and what you thought were friendships.

Sending hugs 🤗

Yes I empathise, I am someone who tries to keep friendships at all costs but when I got sick I was dropped from a great height by most. I was no longer fun, or had the money to splurge or the energy to go out and drink. It hurt like hell so I built up my Social media presence with thousands. It has taken me a while to realise that not everyone is who they appear to be. I am reducing slowly too. Xxx

Titters profile image
Titters in reply to BeeHoneyB

That’s very interesting and comforting To me. Over the last 5 years I’ve allowed

Many friendships to drift away. Being

Chronically ill, not reliable to make commitments unless I literally do nothing for 10 days before the event ( but you

Know how life intervenes); I’ve discovered

The things that that my soul is fed by.

It is easier now. I decide who I want to be

In my life. Literally are they worth my time?

Sadly few are. Instead of my illness making me self involved, as it surely did in the beginning; my heart has expanded to include even the worst of the worst. Great Kindness has settled over me like a cozy

Sweater. All those so called friends did

Not keep me warm. Great post!😌😃😎

Very well articulated xxx

Thank you cecily for sharing this. Its just so perfect and helpful. Keep safe. Sending you lots of cwitches too. Xx❤🤗❤🤗❤

I am glad you like it Misty. How is your foot pain now loveky? Xxx

Your timing cecily could not have been better with those beautiful words. Id been out and struggled with my foot and felt very low about it. First time out in 10 days!. Its still so swollen and im doing everything ive been told to do. Hoping for podiatry appt soon.

How is your knee and i hope your feet are less swollen now its cooler?. Keep safe lovely. Xx🤗❤🤗

Oh Misty I am so sorry that you are struggling with your poor foot. It is the constancy of it all that gets you down isn’t it? I think we are quite resilient but when it goes on and on it grinds you down. My feet are so so much better now that I have the diuretics. I am off out with my lovely carer/ friend Rosemary on Friday so hopefully we will not have to take the wheelchair. I desperately need physio though because my knee is suddenly giving way, it’s a damned goos job I have two of them lol. I would ring podiatry to see if they can fit you in early lovely. Good luck xxx

Hello lovely cecily, thank you for your lovely message.Your SPOT ON that its the length of time that grinds us all down!. I think we're all very STRONG with what we're having to deal with day in day out.

So pleased your foot is better and your going out on fri with your carer friend. I hope you have a lovely time because you've been stuck at home so long!.

You need to chase physio as your knee definitely needs looking at. Its dangerous its like that you could fall.

Im seeing if i hear from podiatry this week as i should do and will chase them next week if i don't. They make appt's a month at a time. I went out to an appt today and could wear my trainers for first time since op so swelling improving. Its given me hope.

Appt was awful with an inexperienced nurse for a smear test. Its the one test i always dread as do have problems with it and shes given me a lot of pain trying to do it. Shes made another appt for a month with a more experienced colleague thankfully. I don't wonder we ladies can be traumatised over it!.!. 😪

Have a lovely time on fri and catch up again over weekend. Keep safe. Xx

Oh Misty I feel your pain re the smear. Because I am obese the surgeons left my cervix whilst doing a total hysterectomy. Honestly I woke up and was livid. I had polycystic ovaries, fibroids and endometriosis and I had had three lots of pre cancerous cells removed previously from my cervix. It means that with no HRT my cervix has retracted and I developed vaginal atrophy. They have to use the extra long speculum and the pain is awful. Every time I go the nurse just cannot seem to get it and I end up bleeding and in pain, not to mention that having two badly arthritic knees in that position. I have now had three reminders and I cannot bare the thought of it. We used to have a senior lady GP who could sort it in two minutes flat. I really hope the second attempt is less painful and swifter for you lovely xxx

Oh cecily, thats just awful. Im not surprised you were livid after going thru major surgery and retaining your cervix which was causing so many problems and they've added more to you. You've been treated so badly one way and another.

Im sure this is what is happening to me and it is so painful and makes you feel awful. Hopefully next time will be better with a more experienced nurse!. My surgery is good at handling these things!. Its an awful time to be doing anything medical at the mo.

I do hope you had a lovely time with your friend. So good to have a change of scene and a chat. Hope shes good at laughing!. 😀

Thank you for your very understanding message cecily lovely. Catch up again soon. Keep safe. X😀❤😀

Hi Cecily This was so lovely to read. This lupus community has given me so much support when I have asked for it, what has been a very difficult year for me with my lupus. Thankyou for posting and keep well🌻

Hi Josiah, I am so pleased you like it. This forum is amazing isn’t it? So many lovely, supportive, knowledgeable people and we also get to share victories and art work, pet photos and wildlife, gardens and baking. I really hope that you are feeling a little bit more comfortable and in less pain now? You take care xx

HiThankyou and yes, having a bit of an easier time😊

That is very good to hear 🙂 xx

Great words CP and a timely post! 2 friends from Wales have come to visit and it was so nice to have a Cwtche - after 18 months of not seeing them!

Oh how fabulous xxx

Thank you for that Cecily, that is just what I needed today as last few days my mood has been up and down and it's been hard trying to come to grips with it, but those beautiful words have helped, thank you once again and a big Cwtch to you too. ❤❤

I am so sorry that you have been feeling down. I have too. Sometimes it is difficult to cope with life when your body is beating you up too. I really hope things improve for you xxx

I really hope things get better for too, it's hard sometimes but with people like yourself on this lovely site you do realise your not alone, take care xxx

Thank you so much xxx

Morning CecilyParsley how lovely. It made me cry. I'm feeling so low today. This forum seem to be the only people who understand. A great big thank you to you all 💖

CecilyParsley profile image
CecilyParsley in reply to JCZW

Hi there, I am sorry I made you cry but sometimes we need a release. I know I do when I feel so fed up and uncared for. I really hope that you feel better soon. This forum is a lifesaver for me when I feel so much despair, it lets you know you are never alone xx

JCZW profile image
JCZW in reply to CecilyParsley

Bless you I feel that I've got a second family. Xxx

CecilyParsley profile image
CecilyParsley in reply to JCZW

Me too and I really cherish that xxx

Such special and meaningful words. 🥰 Just what I needed Cecily, and I’ll read it again before my phone appt next Wednesday. 👍🏻👍🏻 Thank you for sharing as I’m sure everyone here can relate to the wisdom of these words. 💖😘🤗xx

I am glad they will be of use lovely xxx

👍🏻👍🏻👍🏻 🤗😘xx

Cecily, Thank you for sharing such beautiful words. It led me to Kirsten's Facebook page to discover more enlightening and supportive messages. You have definitely helped me start my day in a better place. I really don't have the words to let you know what a difference your post means to me.

Healing hugs.

Oh bless you. I am so pleased that it helped you. I know that it helped me try and lift my head up. I do hope that you are ok lovely? Xxx

Hi Cecily Parsley I love the sentiment that the words convey because it's true for so many people especially on this site. Thanks for sharing this.

I do have a question, what does cw..I can't remember the rest of it 🤔 lol 😆 anyway thank you. I hope your doing well and enjoying life. Take care 🙂

Cwtches...that's my question lol what does that mean?

Hi OK a Cwtch is a Welsh hug given with gusto and sincerity. I am struggling currently which is why I thought I would share this when I saw it. I hope that you are keeping as well as you can lovely? Xxx

I like that cwtch for you. I'm sorry your not doing well, I hope that changes for the better and I'll say a prayer 🙏for you. I'm as well as I can be, I have appointment with rheumatologist tomorrow and I know it's a waste of time because there's never anything new or different. I've been going to her for a long time and never a real diagnosis it's always undifferentiated connective tissue disease, I know I have raynauds, arthritis and can't think of what else but she keeps saying scluraderma crest but never puts it as diagnosis, I'm going to ask her why and how come it never changes so I'll see how that goes. A couple of days before appointment I get a form to fill out and it's always the same re: rate pain from 1 to 10 for severity on different parts of the body and how difficult things are to do, I think it's a waste of time, also labs done so she can see if anything changes. I have access to them and it shows possible cardiac problems and I read her notes and all it said was hydrate...nothing else, I'm so irritated 😤 I know everyone here feels the same frustration and at times hopeless/helpless. I'm sorry I didn't mean to droan on you have enough to take care of. Take care my friend ❤and thanks for listening.

Not at all Firstly I am amazed that you get to fill in a form to rate your pain and get bloods prior to the appointment. That would be such a positive thing if utilised properly. Currently I cannot even get a face to face appointment. My last long term Rheumy, who I saw for five years never actually examined me and rarely took bloods. He would see me every six months and depending on his mood would say yes you have Lupus definitely and I think you have had Bechets since your twenties or other times you probably have Lupus, you may have Bechets and you also have Fibro 🙄. He irritated the hell out of me but dear me since he left I have had three others that were awful. The fourth one I haven’t seen yet. My first telephone consultation was so positive and hopeful I cried yet the last one was five minutes flat and left me absolutely gutted. I honestly do not think they comprehend how distraught their indifference can make us. I wish you all the very best for tomorrow. I really hope, despite your misgivings that it is more productive than usual xxx

I'm sitting in the waiting room at rheumatologist and I hope I don't forget to ask the questions I would like answered lol. She's busy today so it'll be a long wait. I'll let you know how it goes. Take care

Hi how did it go? I have been thinking of you and hoping that it is a good appointment xxx

I asked her why no definitive diagnosis yet and she said because I've been stable as far as either scluraderma or Lupus and hopefully it will stay that way or get better, I doubt I'll get better but who knows. She wants me to eat all fresh food nothing processed or pre packaged and exercise 🤔😩... lol I know I need to do that, I'm so out of shape and have a hard time walking any distance but I'll give a go. She said 3 of her other patients 1 of whom was going to be put on transplant list started exercising and eating healthy, lost 30 pounds and no longer needs transplant for kidney and the other 2 are doing the same thing and feeling so much better. Well that's the gist of it, I need to make a plan and get started..I hope, as with anything keeping up with it will be the hard part. Take care sweet lady and I hope your feeling better soon.

What!!!! So that’s it then obviously everyone knows your kidney failure if you are overweight so go on a diet and they will recover?? I am incredulous. I have absolutely no doubt that improving diet and moving more is good advice for anyone but to claim it reduces kidney transplants is just unbelievable. Don’t kill yourself with the exercise I have been there done that and sustained injuries that really set me back. Xxx

It is crazy and strange because there are lots of people who are thin and have kidney failure and on transplant list so I'm not sure she was being completely honest with me. Kidney function can improve with change in diet but that's about it as far as I know. I know it's true for diabetes type 2. It seems everything comes down to either weight or age and I'm both fat and old 😜 no winners here.

Oh honestly it made me so cross to read what she said. It is clearly absolute 💩. Can you see a different Rheumatologist? Xxx

I have gone to another rheumatologist a while ago and I wasn't impressed with her so I went back to current one. I hate dr shopping but sometimes we have to, I'll stay with her and see the other doctors for everything else since it's all related. I have a life long problem with anemia and I think that's why I'm so tired all the time, it seems insurance won't pay for iron infusion until your iron store is at 50 or below and I will most likely be there the next time which is in a couple of weeks when I get labs done and then hopefully iron infusion. Sometimes I feel lost in myself if that makes any sense.

Yes I understand. It must be so awful to have to get your insurers to pay out all the time and agree to things. Here in the UK we are so damned fortunate that we pay our contributions to a free at the point of need service, I just really wish our Rheumatologists were better. You take care xxx

You are definitely lucky with health care. Thank you for letting me get it out of my system. Take care sweet lady xxx

You look after yourself xxx


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