Nobody is more bored than I by my ill-health...

[_bunty_]

Hello everyone - I absolutely hate moaning because I know how lucky I am compared to a lot of other people suffering massively every day. I just wanted to share and ask if this has happened to other Lupus sufferers out there. I know you're all lovely and understanding so bear with me!

Normally (e.g. last year and the years before) I'm incredibly strong, walk at least 10k a day, do chores on our farm etc. I visit my friends in London every month and race around in London and beyond. Usually I have one or two big lupus flares lasting for a week or two and gradually I start to feel better after days in bed, sometimes doubling my Hydroxychloroquine for a bit (I've got a good rheumy and GP) and if it gets bad, I'll take steroids for a week which always helps.

But this year is obviously different. Until April I felt fine, but since then I've been plagued with small flares. I spend a couple of days in bed when I'm so fatigued and my hips and my fingers ache and everything is sore, and then, feeling slightly better, I'm keep to get up again and I know to pace myself. Then I'll feel OK for a couple of days and then I'll feel so exhausted again I'll have to return to bed. I feel incredibly guilty because I had to move back home with my parents from living independently after my first stroke when I was 30 (2015), and my second one was in 2018, ravaging my language - I used to be an editor. My mum is happy to look after me but I hate being thus bedridden, sometimes for weeks on end.

I know that this year has been a struggle for everyone; so uncertain and so unpredictable. I wonder if anyone else is finding it difficult shaking persistent lupus flares and getting back to "normal" (whatever normal is, these days!)

Any advice from anyone would be so welcome! Today I had to email my rheumy and my GP asking for advice but I feel so guilty writing to him (which I've done several times this year since April) because I know I lot of people with lupus are constantly ill and I should feel lucky! Thanks in advance.

Betsy xx

[svfarmer]

Hi I’m so sorry your suffering at the moment - and your not moaning at all so don’t beat yourself up- Ive got Lupus which I’ve had for 4 years - the thing with it is you never know how your going to feel from one day to the next - it’s a very unpredictable disease which effect people so differently- for example I’ve just had my son and girlfriend to stay, they came at the weekend- well it has totally wiped me out as I did too much whilst feeling tired - when will I learn ? I haven’t seen my son since Christmas and kind of play the lupus down when he comes as he really worries about me - I’m just annoyed 😠 that I can’t be a “normal” mum , I’ve spent 3 days straight now just sitting on the sofa doing nothing as am so exhausted.

I hope your fatigue gets better very soon and best wishes x

[_bunty_ in reply to svfarmer]

When you're excited to see someone you want to appear your old self! I hope you had fun with your son - I know when I'm overdoing things but sometimes you can't help it! Be kind to yourself and give yourself nice treats! I hope you'll feel better soon x

[svfarmer in reply to _bunty_]

Thankyou so much x

[Babydriver012]

I know how you feel I had a Stroke when I was 28 due to lupus and live with my parents they help me a great deal. I do work part time but come home knackered. Going out anywhere after work is mostly out of the question because I’m so tired and achey.

[_bunty_ in reply to Babydriver012]

Very sorry to hear that love. Surely you're not working at the moment? It's so scary at the moment - do you work with colleagues? Must be very stressful x

[Babydriver012 in reply to _bunty_]

Yes I am working now I was shielding for three months. I work in a small office so not many people thankfully.

[Hamptons]

This was my life last year. I was like you generally fit and busy then it felt like one constant flare. It got so bad I reduced my work hours and thought it was the end of working life. Then it stopped and life has pretty much returned to a good level again. It is just getting through and doing what you can. But, doing some things you enjoy so you still feel like you. Your team and parents understand your difficulties and will not mind caring for you or ensuring you have support. She’d the guilt as it is not helpful when you are already tired.

Good luck.

[_bunty_ in reply to Hamptons]

Thank you so much for your compassion and advice - very welcome. Encouraged by your own experiences: it made me feel like I can rally again hopefully some time soon! X

[Muff20]

You are having a tough time, don't be hard on yourself 😁 This is a very unfair illness. Unfortunately I have been ill for nearly 7 years and it took 5 years for Drs to even listen. Now I have a good rhuematology consultant but still no clear answers. I had to give up work 5 years ago because I kept collapsing. I have struggled with my breathing for 4.5 years. Struggle to walk if there is a tiny slope or up stairs. Still no answers. If I do anything, housework etc I am totally exhausted and sleep for hours. My muscles are so weak. I am starting to believe no one will give me answers. My Mum had the same problems and she got no answers. I am now treated for thyroid, celiac, b12 deficency and on hydroxcholriquine. Can they try to see if there is anything else going on? Often there is more than one autoimmune conditions together. I find alot of support in groups like this. For years I thought I was the only one. I try to just take one day at a time. Be kind to yourself. Happy to chat anytime.🤗

[_bunty_ in reply to Muff20]

Thank you so much for your response and I’m so sorry I’ve been through such a wringer! (Ringer?) I’ve been mainly in bed and didn’t check the latest replies... thanks for your compassion and kindness.

My own Rhuemy is obsessed with me having rashes or hair loss because my last blood test (in July, when I was feeling ok that week) turned up no lupus active in my blood so I guess I feel like the girl who called wolf too much! He called today and urged me to walk a little bit every day to build strength. But I wonder if the lupus isn’t active why am I still so weak? My bloods were from July... You’re right: lupus is a difficult disease to cope with and usually doesn’t come with instructions! Specialists are obsessed with specific symptoms and when you don’t have some they dismiss the other symptoms. I’ve never had any problems with chest pains, even when I had the worst lupus flare I’ve ever had. Also he wants proof of hair loss and I’ve literally never had any hair loss! But my main symptoms are sore joints and extreme fatigue! Consultants expect every lupus sufferer to have the same symptoms which I find bizarre!

Take care of yourself. Thank you again for your kindness x