Please don’t forget ……

[svfarmer]

hi folks haven’t posted in such a long time but came across this and thought I would share - big love to everyone ❤️

[GloomyEeyore]

That is such a good reminder. Think we all need it sometimes. Hope that you are doing ok. Weather here is so strange which has been making my joints ache something bad. Really hot but bursts of torrential rain and very windy 🤷🏻‍♀️ Hopefully will settle down. Probably around 14th August when our schools go back! Xx ☀️💦💨

[svfarmer in reply to GloomyEeyore]

I’m all good thanks - where is it you live? We have had so much rain so difficult to get the furry girlies out for a wee as they hate the rain 😂❤️

[GloomyEeyore in reply to svfarmer]

I’m up in E Scotland. It was glorious sun this morning and now the clouds have opened. Getting lots of rainbows though as the sun still shines even during the cloudbursts! 🌧️ ☀️ 🌈

[Djlr in reply to GloomyEeyore]

WEATHER is a MAJOR FACTOR in many LUPUS PATIENTS and makes me feel like I AM A “Yo-Yo “ being PULLED up & DOWN 🥴🫠💜

everydayhealth.com/lupus/st...

creakyjoints.org/about-arth...

lupuscorner.com/the-weather...

[hopegalore20]

Yes, kindness cost nothing. All you need is a good heart ❤️ x

[CecilyParsley]

It is the hardest thing to overcome when you are so used to being Independent . I seem to perpetually say “ sorry” for things I cannot help. Xxx

[happytulip in reply to CecilyParsley]

Since my Dad died I've found that I have become unapologetically not sorry (if that makes sense), for my symptoms, my feelings and my needs and my truth . For once I'm speaking up when I need to, like when people tell me that covid is no longer a risk to anyone, or that I'm not "really" allergic to the sun, or "you really can just push through."

I tell them exactly what I think, politely but sometimes bluntly. I have found it to be rather liberating x

[svfarmer in reply to happytulip]

good for you - I’m so sorry to hear about your dad xxx

[CecilyParsley in reply to happytulip]

Wonderful that you can speak up and not be sorry. Why should we have to validate our reality. Personally I do . I recently spent 2 hours with a social worker who was incredibly dismissive of all my symptoms except the falls. Both myself and my husband explained repeatedly the difficulties I have. Cut to Friday when the care plan I had asked for arrived and it said “ she takes medication for the bruises of frequent falls”?. I was raging. Why did I waste two hours listing my meds, explaining the fatigue, oral, nasal, genital sores, osteoarthritis, fatigue, migraines, repeated infections, rashes, joint swelling, gut problems when she clearly did not think it was important.She made me sound like an elderly person “ she likes her hobbies of pottery, reading and cooking”. More about that than my actual ill health grrr.

Meanwhile I continue to apologise to my husband for dropping things, for having to help me up, for having to cook and clean when I just cannot do it and to my carer for having to take my wheelchair when we go out, for lifting my leg out of the car, for carrying my handbag etc I am trying not to but I am definitely a work in progress.

I am so very sorry for your loss lovely but I am pleased that it has been a catalyst for you to assert yourself. You go girl 👏🏻👏🏻❤️ Xxx

[Oshgosh in reply to CecilyParsley]

have fallen a couple of times recently- I put it down to GPtrying to get my BP too low. Reading your post reminded me why I have up to now have avoided the falls team. Slippers expensive ones in the bin , awaiting delivery from vionivs . I hope you are coping , it’s difficult when people paid a salary to do a job are unable : unwilling to listen : comprehend to what they are told . I know what you mean about apologising. Xxx

[CecilyParsley in reply to Oshgosh]

I am sorry about your falls. Apart from the injuries it shakes you up and reinforces vulnerability. When I tore my hamstring and the muscles around my knee I was told to rest for three months or it would not heal, no physio. I followed the advice and then after three months when I started walking again my leg kept buckling. I had 23 falls in an 18 month period. I don’t think there was a part of my body I had not hurt, knocked my front crown out too. When I self referred to physio their assessment was that my legs were too weak for me to stand to exercise so I had to start lying on the bed and build up. Experts sometimes don’t know what I’d best for us. I thankfully have a wonderful OT who got me my own fall cushion so I have avoided the falls team too. I hope the vionics help you lovely xxx

[Djlr in reply to CecilyParsley]

knee - buckling (Friend w/MS and this happens to her a lot) me very SELDOM.

[Djlr in reply to CecilyParsley]

WE have to really EXPLAIN (TEACH) them about the FATIGUE, & other SYSTEMS ……

They don’t understand- I get, “Oh, I get FATIGUED TOO” 😩😵‍💫😳.

We need to PRINT OUT “LUPUS INFORMATION” because NO ONE in HEALTHCARE except “RHEUMATOLOGIST” understands the EXTREME “FATIGUE”:

…….“CANT MOVE,

……CANT LEAVE BED DAYS,

……CANT GO OUT TO DINNER,

……CANT DO ‘LAUNDRY’,

……..CANT ‘COOK’,

………“SIT on FLOOR” when (I am) COOKING because Too much ENERGY needed to STAND”

…….. 20 MINUTES of straightening the HOUSE = TOTAL EXHAUSTION

All theses ……ON OUR “BAD DAYS” 💜

It Affects going to WORK, FAMILY “MAJOR EVENTS- WEDDINGS, etc”, CARING for LOVED ONES, Taking CHILDREN to SCHOOL, their Events, Sports, “CANT STAY for OUTDOOR EVENTS - ☀️ SUN CAUSES flares - & LUPUS SYSTEMS WORSE🥴☹️

“EDUCATE any PROVIDER 1st “ with “PRINTED MATERIAL” on how LUPUS AFFECT “EVERYDAY LIFE” & if LUPUS left out-of-control will CREATE WORSE LUPUS ACTIVITY in LUNGS, HEART, KIDNEY, BRAIN, ETC …. Give info to anyone like SOCIAL WORKER, untrained NURSES, regular GP’s w/out KNOWLEDGE, OTHER Specialists, etc

Articles to HELP:

lupus.org/resources/how-lup...

hopkinslupus.org/lupus-info...

lupus.org/resources/how-lup...

lupus.org/understanding-lup...

lupus.newlifeoutlook.com/li...

lupus.org/resources/lupus-f...

lupus.org/resources/coping-...

FIND “articles” that SAY what you need it to SAY about YOUR LUPUS SYMPTOMS……….WE are ALL a Bit DIFFERENT in how LUPUS “ATTACKS” our BODIES …

Don’t go BLINDLY into ANOTHER Dr appt or Mtg w/SOCIAL WORKER w/out being PREPARED to TEACH “THEM” -

They were “NOT TAUGHT in SCHOOL” about LUPUS - 1 -3 Hours ‘at Most’ on ALL Autoimmune Diseases, if that 🧐

ASK them what they know about how LUPUS CAN & “DOES” affect Patients 🤔🤔🤔

Lupus makes MY OWN BODY “ATTACK” all my ORGANS - causing EXTREME FATIGUE, UNBALANCED due to affects in BRAIN, EXTREME DIGESTIVE ‘ISSUES ’ from MOUTH to COLON, EXTREME “MOUTH SORES”= LUPUS not under CONTROL

I AM “SICK” 💜🤒🫤😥😥😥💜

[happytulip in reply to CecilyParsley]

That sounds thoroughly horrible, no wonder you feel so awful and fed up. I suppose I was referring more to family members and friends in my reply to you. Convincing professionals is harder.

As you know I am totally allergic to UV (daylight), so my social worker has referred me to a few community navigators to try to prevente from being isolated. Their suggestion.......drum roll please........is for me to go walking with the ramblers. Walks start at 11am and last for 1-2.5 hrs. Anyone see a problem with that?☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️

The next paragraph goes on to discuss carers. They have sent me a brochure of care homes. You need to be at least 65 to go into most of them. I don't need a care home, just a little help, and I am 41.

WHAT are they paid to do? Like you my assessment was drivel. It said I am on no medication. I am on a minimum of 18!!

Makes me not want to ask for help.

Keep going. I found replacing the phrase "I'm so sorry," with "thanks for your help," helped me wean myself off the apologies.

Sending hugs x

[CecilyParsley in reply to happytulip]

I am so very sorry. The biggest frustration for me was that I was a Social Worker and Manager of Alternative to Secure Unit, Children’s Homed and Child Protection Teams for 27 years. Had one of my team given me such a generic, report lacking in insight and grammatically poor they would have been handed it back to do again. I was horrified at the ill educated and ageist assumptions and lack of content.It is the worst I have seen and that it totally negates my struggle is just unforgivable. My initial response was I will edit and return to her but then I thought honestly what is the point? They provide me with two hours of care per week to take me to pottery. I was getting nine hours but then I had my pension, lost my ESA but then faced with a bill of £90 a week which I cannot afford so I had to drop to two hours which I pay £36 a week for. The OT has been the only one who has done anything for me really. It is a very poor service.

Re the thank you I say that too then add sorry afterwards. There is no hope for me lol xxx

[Djlr in reply to happytulip]

What was your COMMENT to the MID-AFTERNOON “WALK” ??

I would have just “LAUGHED” & told her WHERE to buy the “LUPUS ENCYCLOPEDIA” by Dr Donald Thomas

amazon.com/Lupus-Encycloped...

The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families (A Johns Hopkins Press Health Book) & “SOCIAL WORKERS” too !!!

(- SW not TRAINED on LUPUS ) 🥴

[Djlr in reply to CecilyParsley]

It does sound like your Lupus is definitely very ACTIVE and seeing the RHEUMATOLOGIST could help to see what NEW MEDICATION, ie BIOLOGICS (like Benlysta, etc might help you.)

GASTROINTESTINAL ISSUES- SEE a GASTROENTEROLOGIST & MAKE “sure” they understand LUPUS & how it affects Patients- They can better SPOT TREAT the various SYMPTOMS we get & better “treatment” for their area of expertise.

Same as with any RASHES - see DERMATOLOGIST to get proper care - possibly STEROID CREAMS & (STAY OUT OF SUN ☀️ 😊💜 if SUN is a Factor, )

my.clevelandclinic.org/heal...

THRUSH - Common in Lupus

Get a NEW RHEUMATOLOGIST- best advice, they run out of IDEAS to help us & FRESH EYES can make a difference💜

Once Lupus goes out of Whack, it hard to Pull Back 😐💜🙏🙏🙏

[CecilyParsley in reply to Djlr]

Well my Rheumatologist says the zlupus is currently inactive or I might not have it at all. He feels my symptoms are Bechets but he is not ruling out Lupus. This has been ongoing since I first got very sick. In 2009 diagnosed with Lupus and APS by Rheumatologist, confirmed by Haematologist. In 2010 new Rheumy says not Lupus but Bechets. Second opinion at St Thomas’s Lulus Unit says SLE, Raynauds, APS, Underactive Thyroid,Severe Vit D deficiency. Next Rheumy says UCTD. Next one says Lupus, Fibro and Bechets. Referred to Gastroenterologist who said choking and rash and spasticity in tendons could be CREST, hiatus hernia, acid reflux,Pernicious Anaemia diagnosed concern over bleeding sores down the oesophagus felt to be thrush. Biopsies negative fir thrush or infection? Rheumy dismissed the CREST diagnosis and shrugged about the oesophageal sores. Next Rheumy said Lupus was active so doubled Hydroxy. Developed macular oedema and when I saw him as an emergency he said that there was nothing wrong with me but Fibro and “hysteria”. Next Rheumy said absolutely not Fibro but mild UCTD. Next one MCTD. So I have been there done that really. I always feel an absolute fraud telling anyone professional or friend/ acquaintance about my condition because if the medics are confused about what it is I do not feel validated sadly.

[Djlr in reply to happytulip]

I love the one where they say, …

“I just ‘push through’ when I am SICK; I want to get the MOST out of LIFE”- ….. implying that ‘I should push through too’ 😳💜😟💜🫠

[happytulip in reply to Djlr]

Yes,but generally their "sickness" is mild to moderate and fairly short lived and doesn't involve the feeling that their entire body is on fire whilst also being run over by a a steam roller.

I told my aunt to walk a day in my shoes before making any comments.

[Djlr in reply to happytulip]

“Well, my Brother with COVID & Pneumonia got a good TASTE of LIVING W/LUPUS like Illness”; but HE still says He was getting up & PUSHING THROUGH, even though a “set of STAIRS” was killing him”

I think because it’s CONSTANT with us, and it can get WORSE & ATTACK more systems, if we don’t REST, that puts us in a continual “FLU-LIKE CYCLE” - they will never understand. 🥴💜🥴

[happytulip in reply to Djlr]

And they are inferring that you don't want to make the most out of life!

[Djlr in reply to happytulip]

THAT’s Perfect 😂🤣😂🤣

[BonnyB]

Love it! Hope you are doing OK. Oh how I miss walking my dog. Nice to see your post x

[svfarmer in reply to BonnyB]

😢🐶🤗🙏💕

[Tiggywoos]

that’s such a fantastic post hun bought tear to my eye . Tiggy is in and out in and out so I bet your girls aren’t enjoying these April showers ☔️ either 🤦‍♀️😂xxxx 🤗 😘

[svfarmer in reply to Tiggywoos]

the furry girls hate the rain 😂🤗😘

[Tiggywoos in reply to svfarmer]

Tiggy does too but then goes and sits on wet grass 😂🤷‍♀️🤷‍♀️🤷‍♀️

[Gardenpots]

That is beautiful we all need reminding of this occasionally. Thank you for sharing it. I’m afraid I’m my own worst enemy and continue doing stuff trying to ignore the the

[Gardenpots in reply to Gardenpots]

discomfort until I have to give in 😔. This morning woke to a beautiful rainbow sunshine and showers continue but am reminded how beautiful my little world is here. 😎

[svfarmer in reply to Gardenpots]

🤗🌈😘

[svfarmer in reply to Gardenpots]

🤗🤗❤️

[Spotty-ewe]

That is such a great reminder SV and something we should perhaps dish out to so called freinds who haven’t a clue what we go through, nor really want to know. Fortunately I have very few of them but we all know at least one. That is why this forum is such a great place to hang out where our friends here truly do care, do understand and do help, support, advise and simply listen whenever we need it. 🥰

Thanks for sharing SV. So pleased to hear you are doing well. 👍🏻 Take care.🤗xx

[svfarmer in reply to Spotty-ewe]

🤗🙏❤️

[MusicalFurbaby]

Thanks svfarmer…have been extra cranky lately due to higher pain and fatigue levels…can’t seem to get enough sleep even though I’m sleeping 9 hours nightly…thanks for the reminder that there’s nothing wrong with having all the feels!

[svfarmer in reply to MusicalFurbaby]

🤗🤗😘

[Butt3rf1y]

Nice 👍❣️😁

[jopo280886]

♥️♥️♥️