Woke with a headache and fuzziness in my head this morning. I am also tired. So having a stay in my PJs in bed day. I've taken paracetamol, ibuprofen & sumatriptan. It seems to have nearly cleared it. The kids are entertaining themselves. I've got up to take my tablets and get 2 cuppas. Hate days like this. I feel guilty for my children. Sod's law the sun is shining today when we've had wet, cold, windy weather the last 2 weeks, i.e. all of the "summer" holidays so far. But I'm also annoyed with myself. I've taken 5mg pred the last 2 weeks and my treatment plan is for 2 more at 2.5mg. I've managed 3 nights camping and have been out and about with my children. But when I'm feeling OK I always over do it. It's still really hard to pace myself!!! When they are at school I do OK because I nap or take a rest Monday to Friday and then survive the weekends. I haven't been napping. But it's hard when they're home all day. It doesn't really matter. They are entertaining themselves. The housework can wait. But the guilt! Plus the only thing I had to do today was collect my meds from my surgery and my mum went to get them for me - I just opened them and they'd fobbed me off with a generic Hydroxychloroquine and not put Zentiva in. So mum's gone back. Grrr. More guilt. On the up side, I'm doing well really. The Hydroxychloroquine, MMF and mepacrine do seem a good combo for me so far. Less fatigue, headaches, wrist pain, aches and pains, no diarrhoea - bowels back to normal it seems. My lupus rash at the nape of my neck is so much better! Hardly visible below hair line and getting better above. I've had that for 8-9 years. It also doesn't itch anymore. Result. I have even worn my hair up, whereas before I was too embarrassed to. So just an off day. I hope my poor mum doesn't face a battle to swap my meds! It even says Zentiva brand only on my prescription!
Having a stay in my PJs and resting in bed day -... - LUPUS UK
Having a stay in my PJs and resting in bed day - but doing well on the whole. Mepacrine seems to suit me.
Hello, Wendy39. Sorry you're not having a good day. Hope things improve for the weekend. I always open my 'parcel' in the pharmacy to make sure they've given me Zentiva! It's a real pest, isn't it? Funnily enough my rash on the nape of my neck is improving too. A hairdresser told me that when I thought I was finished rinsing my hair to continue rinsing for as long again so all shampoo/conditioner residue was completely gone. Seems to be working. As for the weather - well it's still cold, wet and windy here in Scotland! Think summer was a day in May this year.
Oh Wendy!
I totally get the pacing yourself, I am crap at that and think I've probably done something to get myself in this mess! Overdoing it just makes me cross so I just do it anyway thinking I'll be alright! Guilt is that nasty little bugger who whispers in your ear that you should be doing this and doing that. Don't listen to him! He's the devil in disguise. So what if the house gets dusty - nobody ever died of dust 😁 If friends come over to see you and passes comment what the house looks like then they're not friends. Please be kinder to yourself! You're doing better than you think chick! We all have 'off' days we just have to learn how to deal with them. Cheesy movies and my snuggle blanket will always be available 😘😘😘
Lots of hugs,
C xxx
Hope tomorrow is a better day Wendy x
Hi wendy , ive just read your post and i was wondering about the Mepacrine , is it similar to the plaquenil. It horrible when you are feeling miserable and tired and you have young kids on their holidays . I hope you start to feel better soon and your energy levels pick up xx
Thank you! Yes mepacrine is same family as Hydroxychloroquine. It's an anti inflammatory and not a DMARD. From memory it's used for SLE, DLE and SCLE. Good for skin issues and fatigue, aches and pains. I only take min dose - 3 x 50mg a week. Dr K in London mentioned getting the right balance for me, adding mepacrine, possibly reducing the MMF and in future possibly adding methotrexate as well. He said it spreads the risks too. A much more bespoke treatment plan than what I was offered locally. Previous Rheumy offered nothing. Dermy says if MMF wasn't working it was that or Azathioprine. End of story. So time will tell. But I can see an improvement! Just would always love more energy! Hard to accept that energy levels will never be the same again. You take care. X
Hey Wendy,
I bet you are doing OK really. Ask your kids and I bet you'll find out that you are the best mum in the world - and isn't that all that really counts?!
Even on the days when you are not racing about building tree houses or taking them jet ski-ing or buying them ponies, you are showing them how to cope with hard times, and how to be loving and thoughtful and those are the most important things that any parent can do x
Thank you for your kind words. My children are very understanding and they offer to get things for me etc. So they are caring and thoughtful. They have a good understanding of lupus for their ages. You are right, it's all life lessons. Plus because I don't work any more and get all holidays with them, they do have me here all the time. Hopefully that stability counts for a lot too. Really have to appreciate the simple things more. I am hard on myself and I wonder if you ever really accept having a chronic illness? Thanks for your words, they did make me smile. X
Yes, I am struggling with the idea that I might not get back to being that person who goes mountain walking every weekend. I saw someone climbing Snowdon on the telly last week and I know it so well that I could almost feel the rock under my feet and smell the sheep-bitten grass. The thought that I may never walk that way again is almost unbearable. But there we are, we don't really have a choice but to get on with what we have do we?
You are exactly right that to be present is probably the single most important thing you can do for your children - not just physically, of course, but emotionally - paying attention and showing them how their worries and triumphs and hurts and joys really do matter - because they matter. You are doing a good thing too by showing how to cope with adversity and that even when things hurt and get broken, there is always a way of mending them. x
Hi Wendy. You have my total sympathy! I know all about pushing myself too hard with 3 children's needs to put before my own. I love the warm days - I'm far more likely to take a rest on the patio but this showery, cold weather is killing me! I've been so sore and exhausted lately with a rotten chest that I was positively excited at the prospect of being shut indoors on Wednesday with the promise of heavy rain all day and I confess to feeling much better for it yesterday.
My children love having all of me without doing housework, laundry etc. Watching films, playing board games, reading stories, colouring or just snuggling up together and on their own iPads. I tend to get cabin fever after fairly short periods of this 'yummy mummy' approach - I need fresh air and activity but I also need to moderate the amount . . .
I hope today's 'duvet day' recharges you sufficiently to embrace the next few days. Have a good weekend, Clare xxx
Thank you! Yes the holidays are a challenge! The weather hasn't been great. It's cost me more. Although not the best for me, I long for dry weather so we can meet friends on the beach for a few hours. Cheap. Just an ice cream each and they play happily together in a group. And I get to sit with friends and chat or doze. So lovely to find other mum's with lupus on here. I feel so far removed from those yummy mummy's. x
Hi Wendy
Do hope your duvet day has helped you. It can't be easy keeping it going for school holidays , they're so long when weather poor. Extra tough!. You very sensibly said I need to rest before making things worse which I bet your family admire you for. Glad your treatment is helping you and hope you have a better weekend. Weather might be improving this week. X
P.s. Forgot to ask Wendy, hope mum got you your zentiva brand ok. So annoying when that happens. X
They couldn't give it to her, didn't have it in stock. My mum has looked after a few people in their old age and knows the score with branded and generics and side effects. The lady did the usual "but why can't she have them?" Mum stuck her ground and explained and said that's why her prescription says ZENTIVA brand only. They'll be in on Monday. I have completely run out. It's such a nuisance. It's been like that for 4 years or so, why can't they just get it right! Mum said when I hand my repeat in to highlight it with a marker, so they can't miss it. Going to do that next time. They might see it as unnecessary or rude, but they won't be able to say that they didn't spot it. X
Oh Wendy, why is everything such a battle these days!. Sorry about your prescription, do hope you get them on Monday. That's a good idea of your mum's to highlight zentiva brand on the form!. We have to do people's jobs for them in the end. Good luck for Monday. Hope your feeling better. X
Thanks Misty14. Having another day in bed. Cancelled hen do that was planned afternoon / early evening. It was a big bus tour thing with heavy drinking no doubt, so bring tea total probably would've been uncomfortable for me anyway. Husband has taken the kids out for the day. So I am home alone, in bed and going to sleep and rest. Have a good day. X
Hello. I've no idea, didn't know about that. I'll ask when I see them. I have asked to stick to the same brand of MMF as well but it fell on deaf ears. They don't seem interested in the side effects for us, just repeat like robots but it's the same active ingredients, same medication, fillers don't make a difference. I wish they had more empathy for these issues. Just adds to our battles. How are you? X
I didn't think about sulphites. We are supposed to avoid those anyway aren't we? What lupus drugs are they in? GPs and pharmacists don't seem to appreciate that us lupies are so sensitive and often have histories of allergies and intolerances too - so you'd think they'd get it. And the pharmaceutical companies who make the Lupus meds too! But hey ho. Maybe one day in the future. Xx
Hear hear x
Hope today is a better day for you Wendy xx
Thank you. Have rested again today. Cancelled the hen do I was going on. Stayed in bed again. My husband took our 3 children out for the day. They had a lovely time., they needed that, after being in all day yesterday. I am lucky, my husband is very understanding and supportive. Hopefully be up tomorrow. It's just the way lupus is. Good and bad days. With no crystal ball to know when the bad days are coming. I hope you've had a good day. It was sunny here!
Aw I'm sorry you haven't had a great day, That's the worse having to cancel plans I was the same a few weeks ago and I spent the night feeling sorry for my self and feeling I was missing out.
You will atleast be pleased come tomorrow with a full night of rest.
Here's to a better day tomorrow x
Sorry I didn't catch up with this post until today Wendy but others have said it all. The fatigue is SO debilitating I know. I've been on back foot all weekend - sleep was the only thing I did really well!! Been thinking hard about this because, in retrospect and as a long term self employed artist - when my kids were young I cat napped a lot. The oldest was hyper and the youngest had night terrors so we were both often sleep deprived and hubby was a care worker so none of it was the greatest mix.
I tend to attribute rheumatic fatigue to a raised inflammation levels and poor quality nighttime sleep due to mix of dryness and pain or other unplanned disruption .
I've never really grasped the concept of pacing - or maybe I've grasped it very well over a life time and just do it without even realising?! For me pacing is a matter of sleeping or resting when I need to and seizing the day for the rest of the time. Bad news is when others come in on my own inner pacing schedule and interfere by exerting pressure on me to do more and ride through it "come on you just need some fresh air and exercise and distraction eh?!". When I go for this option it's usually hopeless because I'll pay the price over the following days or weeks.
So glad your med combo is working and your husband and children are so thoughtful independent - all to your credit. Hope you get your Zentiva today. X
I did get my Zentiva, thank you.
I am lucky that as the children were 5, 8 & 9 when I was diagnosed that they have really got used to it over the past few years. I have often had to nap and leave them to their own devices. They probably spend too much time in front of the TV or their screens when I'm like it, but then we'll walk at weekends and hubby took them out on their bikes all day Saturday. So it's swings and roundabouts.
We all do what we have to do to get by don't we.
How are you at the moment? Back to normal here really, so not much time to read or catch up on posts. X
I'm not sure that you can be described as lucky but I guess it's all relative?!
I'm okay thanks although I do seem to be getting that UTI type pain back today - pain right up in my left flank just under ribs round the side and back. Bit fretful as I'm back up on 3g MMF again.
Also fretting about my eldest son going off to India soon and my emergency ENT apt of Friday morning. I can fret for Scotland though! Xx
Gosh, lots going on! No wonder you feel a bit overwhelmed.
Yes, I see what you mean - lucky?!?! Well I guess, I was lucky enough to have them before I got Lupus and they don't get angry or resentful about my illness or my need to rest, they seem to understand it and accept it.
When I get back from my hols now, I'll be very worried about my new Rheumy appt on 22!
I've had "abdominal pain" of various types. Never got to the bottom of it. Meds. UTI. IBS. So difficult to tell. But mine has never been serious enough to investigate.
Take care
Wendy x
Well, having read many posts on HU over the years I think we are both very lucky with our families. 22nd is my big day too - rheumy in morn and oral consultant in the afternoon🤞🏽🤞🏽🤞🏽X
I am very lucky with my amazing family. I'll be in touch before 22nd to see how you are. x
Wishing you well, Wendy.
We all know pacing so necessary, we all forget that, when feeling good... I bet each, and everyone here, has overdone it sometimes.
I've recently taken to having an after lunch nap. Best thing for me. However, how this regime will work on a full day out, I don't know. Not that I have many full days out planned lately, I know my limits lol.
Your family are your rock, and you, theirs. That's the main thing. Duvet days, are just a necessary part of management.
Take care. X
Hello!
Wise words indeed. We all find a way of coping, a way of dealing with it all.
I nap in the afternoons during term time. Depending on how tired I am, between 1-3pm. I then go straight to collect them from school. It's so difficult to do that with them off. We're all out of the routine. But I haven't had to set an alarm much. I find I naturally wake around 8.30/9am. Much more civilised than term time 6.30am.
We're now packing for our holidays, so hopefully I'll be fighting fit for that now.
I hope you've had a good day.
Wendy x
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