All those who have been in a flare recently, how ... - LUPUS UK

LUPUS UK

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All those who have been in a flare recently, how are you doing?

happytulip profile image

I know that there have been a number of us flaring recently and I’m just wondering how you all are? I can’t remember everyone because of stupid brain fog. I know Misty was one of them.

I know it sounds stupid but I had been having such a good run of things that I forgot what a real lupus flare can do to you. I feel like I’ve been hit by a truck and can’t get up!! Sense of humour still intact but rattling with pain meds and doing everything I can to not eat a box of pred. So far the pericarditis is manageable. It’s no better but no worse. I’m in bed most of the day and at least I’m saving on bills as the heating is off and I have no appetite.

A dear friend popped in to help me yesterday with changing my sheets and a blitz of my kitchen. She was amazing. She brought me a head of broccoli too, but only because she knew what I would tell her to do with it 😂

Love to all

HT

29 Replies

a sense of humour is a must have with these horrible illnesses even if others don't understand it. hope you feel better soon

I made it downstairs tonight. First day since 11th Feb. Just got to get back up the stairs at some point 😬😂

Love it (broccoli). 🤣Hope you feel better soon best wishes 🙏

happytulip profile image
happytulip in reply to stiff19

Thanks Stiff. It’s a battle isn’t it. How are you getting on?

stiff19 profile image
stiff19 in reply to happytulip

Ok thanks , 🤞🙏always frightened to say that as things change so quick, but been sending emails and pics to dermy and neuro and both secretary’s have acknowledged and said they were forwarding to docs so hopefully I will hear back. Now just ent to do. You’re an inspiration keeping your sense of humour up , it helps though 👍

I often lose appetite when things are bad , do you lose your taste too?

Hope your better days are nearby 🙏 take care and Thankyou for asking 🤗xx

Thank you ht for your very thoughtful post. Well done for making it downstairs after so long. Does spirits good to have a different view so i hope you make it ok back to bed. You'll feel as if you've climbed Everest. Im relieved your pericarditis pain hasnt worsened and so far your holding off from extra steroids. Thats a big achievement in itself.

Ive not been so lucky and had to ask my gp because pain so bad. He was willing to prescribe 15mg for a week as id had this before and it worked well. He said if it didnt work to tell him but today pain is less sharp on day one of extra so im relieved and hopeful it will work well.

Ive got another forum friend with a flare of pericarditis like us ht and she improved with steroids being raised too.

What has also really floored me since the vaccine is the added fatigue which i know could be pericarditis flare or the vaccine!. This forum friend has been similarly affected like quite a few of us on here with the fatigue which can be a problem for you too?.

Hopefully with lots more rest we will all be much better next week. Have you heard anything about your lidocaine infusion yet?.

Fab of your friend coming to blitz your house. Dont we appreciate those offers of help?. What a lovely angel.

Keep safe and have as happy and well weekend as possible ht. TAKE CARE. Xx🌷❣🌷❣🌷❣🌷🌼🤗🌼🌷❣🌷🤗🌼

happytulip profile image
happytulip in reply to misty14

I am SO desperate to not increase the pred. I’ve upped my cholcicine which has helped but my fatigue is atrocious.My joints are at their worst too. I can hardly stand, walk etc but the worst thing is that I can’t open the medication bottles. Flipping nightmare!

Have you increased your cholcicine. What dose are you on? If I do go up on my pred it will take years to come down 😬😬

misty14 profile image
misty14 in reply to happytulip

Hi ht, sorry your in such a bad way. Id already increased colchicine to 3× a day so pred had to increase. Once the week of 15mg is up i just go back to 5.5mg so no awful gradual witbdrawal which we both find so hard. My rheumy said this was ok. Medicine bottles are a nightmare for us. Whereever you get your repeat prescriptions from you can ask for easier caps etc . I have mine from Boots and tjey're so helpful. Id never manage.

🤞your a wee bit better today ht. Thinking of you. Xx🌷❣🌷

Ohhhhh poor you HT 🥰

Sooooo sorry hun. Sending gentle gentle hugs and love ❤️ and prayers sweetie.

EJ 😊♥️🥰🙏🕊🌿🌸🦋

happytulip profile image
happytulip in reply to honeybug

Thank you. Can you send me a chef so I can have my meals cooked for me as I don’t have an appetite. If I think about food I want to be sick but if someone put food in front of me I would eat it up and be so grateful. Although i’m Back to using plastic spoons etc ☺️

honeybug profile image
honeybug in reply to happytulip

You’re most welcome sweetie.

If I could I would send you a chef hun. 🤗♥️🥰

I remember having to use plastic flatware cause I couldn’t lift/hold the weight of the metal ones.

Just said a special prayer for you sweetie.

Sending you a special little e garden of happy little tulips 🌷.

🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷🌿🌷

EJ ♥️😍🙏

happytulip profile image
happytulip in reply to honeybug

Bless you x

honeybug profile image
honeybug in reply to happytulip

💋 you too hun. 🤗😊

misty14 profile image
misty14 in reply to happytulip

Have you thought about wiltshire farmhouse foods ht that deliver meals to your door?. Its hard being ill and eating but you need to for recovery etc. Theres also parsley box that do meals that you can store in a cupboard and heat up in microwave which is even easier. Just to get you thru these rough times. Have a google of them. Ive heard good reports of both. Xx

happytulip profile image
happytulip in reply to misty14

Thanks Misty but I wouldn't go for those foods. So many preservatives and not much nutritional value.

Fortunately my freezer is rammed with an abundance of home cooked food. Curries, tagines, pastas, stews veggie dishes. It's like Tupperware lottery. I just take something out in the morning and see what it is in the evening. I usually just have to cook some rice or couscous and mix up a quick salad.

Cooking is like therapy to me so I've always got something in the freezer but it would be nice to have a chef at times.

Thanks for the thought though.x

misty14 profile image
misty14 in reply to happytulip

Its hard isnt it ht when our illnesses so affect our lives, interests and hobbies. Im glad you like cooking and prepare so many tasty sounding dishes with healthy salad etc. It would be lovely to have someone to share it with as you say or someone cooking for you!. Nice to have a break from it too. We're missing our meals out!.

I loathe cooking and had it spoilt for me at school by awful teachers!. Good thing we're all different. Do you watch the cookery programs?. Did you see celebrity best home cook?. That was lovely, done in such good spirit that im quite missing it!.

Do hope you feel a little better today. Keep safe and im 🤞 for you. Xx🌷❣

Sending you all hugs!!!! I'm so sorry so many are flaring right now. I'm in awe of the humor and strength so many are showing in this thread. ❤️

Hi happytulip sorry to hear that the best place you find at the moment is bed i was up early today my dog Toby refused to let me have any more sleep and went for my feet as I went to put them on the floor" play mode" As it is his birthday today I came downstairs fed him etc. and payed ball. Lately I have found my symptoms confusing i am extremely tired stiff very painful rt arm and shoulder my rheum says Ihave to have physio before I can have my steroid injection (how long is the waiting list?) Istill have my stomach trouble from many many months ago and still waiting for my MRI scan the pain still feels like gallsones but I have no gallbladder It was really difficult to get a referal to gastro. My steroids were reduced from 10mg to 7mg last month. My hair is vert dry and breaks off I get a lot off hair in my hairbrush more than usual my bowel is very sluggish and I am taking it from day to day my gp left before christmas and I have not been allocated another one so I just talk to anyone and no one if you know what I mean I can't wait for surgeries to open and have a proper face to face consultation I feel lethargic and lazy but I've got no get up and go. Things are starting to improve in the outside world and were heading towards summer and lighter nights. I don;t know whats causing my problems ha anyone any ideas?

Oh what a lovely friend. Broccoli though 🥦🤢 evil stuff. Why are you not getting a carer? Contact your local adult social services department and request an assessment. I only did it because my husband was struggling to work long hours and support me with my health and constant hospital appointments . They set me up with Direct Payments Scheme which means I interviewed and appointed a carer of my choice and they pay for her nine hours a week. It has made the world of difference to me. You really need someone to care for you, make you food, clean, change your bed, get your medication etc. If you lived near me I would cook your meals for you in a heartbeat. I send you so much love and huge gentle Cwtches. Xxx❤️🤗🤗

It's only when I'm not good that I need help and I LOVE to cook and create. I'd be a right grumpy bum if I didn't get to cook anymore. My freezer is well prepared for times like this.I have someone come in once a week to help me and that's enough, in non covid times. I was to maintain my independence.

I did get assessed for care but I found the standard of care was appalling and they told me all the things that they couldn't help me with "because of health and safety" yet there was one carer who was male and much older than myself who seemed hell bent on making innuendo and trying to get me in the shower. That's the only thing he would do!

The stupid man picked the wrong girl and he got reported pronto. Not having that nonsense.

I don't need help all the time. Just when things are bad. At the moment I would rather have a friend come in as I know that they have been pretty much shielding whereas other carers are going into covid positive patients.

I've a very close group of friends. We're all in our late 30s. She did say to me that I had helped her out a multitude of times in our younger years by getting the perfect bag of chips on the way home and when we house shared she always came home to a hot water bottle in her bed. It's all swings and roundabouts.

Mates help each other out and I am so lucky to have them.

So sorry if I upset you. That was not my intention. We all need to do what is best for us xxx

Oh my dear, you haven't upset me at all. I've re-read my response and I can see that it could be read as gruff or hoity, not sure how to describe it, maybe just "off." So it's entirely my fault and I apologise.

I know that you were thinking that perhaps I could benefit from social care and you are absolutely correct to point that out as many might not be aware what they may be entitled to.

I was genuinely keen at one point to get some care but when so looked into it I found that it just wasn't for me.

I am only 39 and was 32 when I got really sick. I needed help and my family definitely needed help as I lived alone and they were far away and had to travel alot to help me.

The main issue I had was how they treated me. I should explain here that I had 15 years working in the NHS. The carers came into my home and for some reason mistook me for an infant. They talked over me and not to me. They discussed their nights out and all that happened whilst helping me wash and then when it came to providing me with what I needed like meds and food they got it wrong everytime.

One of my biggest issues about lupus is that it has taken so much independence away from me and to then have someone come into my home which ai had worked so hard to own and talk to me like an infant was to much. Even the social worker agreed. I found it dissempowering, not empowering. It made me feel more disabled than ever. And the male carer who was inappropriate got involved in a big investigation.

I think I was just really unlucky but it did highlight to social services in our area that there is no specialist care for people who need intermittent help and are of a younger age. We skip through the net. No one would think twice about providing care to an 83 year old but a 38 year old...eyebrows raise! Especially with an invisible illness that peaks and troughs

We are all different and I am sure some people have had fantastic experiences compared to mine. But when I told my friends how it had made me feel they all stepped up bless them and have taken it upon themselves to help out when the inevitable crisis hits. We ride the storm together. We've done it with other things like marriage z divorce, death, cancer so now we add lupus into the mix. The journey of friendship is truly an amazing and beautiful one.

Please forgive me if I came acroßs as brash. Typical me, so sorry! It's no excuse but I've had enough drugs to knock Dumbo and his herd out plus no sleep at all and still waiting for the GP to ring. But I'm happy to wait as she is brilliant.

Takr care and sorry once again xx

Oh please do not apologise, I am just relieved that I have not upset you. I was mortified to think I had done so now it is all good. I agree wholeheartedly that care can be intrusive and disabling if you get the wrong carers. I am not fortunate to have either family or friends who could help me and your description of being in bed with severe fatigue and no appetite struck a chord with me as I spent months like that when the only time I ate real food was when my husband came home for weekends. I was too proud to ask for help until his mental health became affected so I asked for him rather than myself. The thought of care was daunting but under Direct Payments I interviewed and became the employer. I get to decide how many hours I use, what I want done, sometimes a lunch out, sometimes wash my hair sometimes just sit and chat. Before Covid it gave my husband a much needed break and when I am well enough a day out for me.I hope your GP rings soon and that you get some ease and much needed sleep lovely. Feel better xxx

Hi It has been really hard :(I ended up with a flare in A&E

they only gave me tramadol that made my bowel worst (constipation)

waited months for to see a consultant

then my flare was better

and now my finger joints are inflamated

and my GP is saying they are only treating emergencies

I feel bad to keep on asking for help

they hurt at night but I am putting up with the pain with Ibuprofen

I wish this COV-19 pandemic would end :(

happytulip profile image
happytulip in reply to Trish3131

My hands are terrible at the moment. Can you try running volterol gel into them at night like hand cream? Use the 12 HR stuff. It works wonders.

I know it's hard to ask for help right now - but you have every right to do it. You're illness isn't less important than anybody else's. You need to keep yourself healthy. Doctors have just as much responsibility to you as anybody else.

xox

Take care all and as someone said keep the sense of humour.

Freezer lottery all been there 🤣 sometimes I even manage to get two portions of the same thing out for us but many a time I’m eating one thing and Hubby is eating a totally different cuisine 🤦🏽‍♀️ I literally don’t know what I would do without my freezer

Gentle hugs to all x

Hi happytulip sending you lots of love ❤️ yes you do forget how bad a flaire is until you get one don’t you? Bless your friend for popping in and blitzing your kitchen for you - I’ve had really bad fatigue this week, had my vaccine yesterday and wow I feel super exhausted today - hope your flaire ends soon xxx

Well, a month after the Pfizer jab, I think, hope and pray that I'm beginning to get better; more energy , less stiffness and pain and biggest relief the depression has lifted.

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