I can remember the initial time I couldn't get out of bed and how long I was off sick. I know I'm on meds and I know it's 'still evolving'.
I still get fatigue and brain fog but I don't seem to have the same degree of pain most people on here have. And I know that's because I've had steroid injections, hydroxy, methotrexate and I'm on anti depressives. Doctors don't give these out for nothing and they must be working. I know I can't maintain a normal amount of energy in a day and have to pace myself.
So why do I feel guilty and why do I feel it's in my head and I'm just lazy?
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Whathappned
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Please, please do not feel guilty, the drugs are obviously working and you must be well balanced on the doses you are on. Remember back, it wasn't always like that was it, remember till the drugs took effect how uncomfortable things were? The diagnosis can sometimes take years to reach and during that time irreparable damage can be done to muscles and joints and so need a combination of drugs to try to help control the pain. Also different people have different tolerance of pain levels.
So NO, it is not all in your mind, it is not all your own doing and you do not need to pull yourself together, you, like your pain are well balanced.
So, give yourself a pat on the back and carry on regardless!
Morning Whathappened, Yes......all the time. Like you on steroid injection, liflunomide (Avara), and hydroxy and battling the fatigue is still the hardest as you never know what each day brings. So Yes....I regularly think this is all in my head and if I just pushed a tad more I could be back at work. Then I know I would struggle as I couldn't rest when I needed to and things would feel worse and probably more flare ups arise.
I think it is in part because it is an invisible disease so even to ourselves we start believing if we look ok then maybe this is just exaggerated. Then I have to remember what rheumy would like to see you regularly, GP's surgery ring me up to review how things are going, on heavy meds, feel fatigued and stiffness in muscles, achy and that I just can't really push myself. Now if I compare that to 2,5 years ago I was living life to the max, earning very good wages, loving the job/challenge, and enjoying my family and friends. Now I keep a diary and have to pace all the time (It's become a way) and I really dislike doing it but getting more used to it. Sometimes it feels like the world is going by faster for everyone else and I'm an observer of it all. Sometimes ....like this morning I feel sluggish and need that extra time in bed and know this is going to be a slower day. Whereas before I always had so much in my mind I wanted to do that day and usually did. Now I have one or two things each day and if I achieve them that's great. It's a different kind of life I think.
I can totally relate to what you are saying.....as I feel this condition almost plays mind games with us......it changes sometimes hourly for me. I can be ok mid morning then early evening feel aches in my stomach, elbows, have a temp and think I'm going to flare. The good thing is now that I know how to reduce the risk of this by taking it easy. So like you say we really are ill/have a chronic condition. We are tricked into thinking we are ok if we have a few good days in a row. I know just one night without meds and I would be struggling......the aches in joints come back fairly quickly.
Hi , for me I particularly said I did not want steroid tablets if I could get away with it. My rheumy has supported me with this decision. I guess it's a personal choice (with your rheumy). For me I have read on here about people trying to come off oral steroids and have difficulty an about mood changes and for me I didn't want the weight gain that some on oral meds have. So I have had three lots of steroid injections over the past 3 years and I only use this when necessary. I think the steroid injection is meant to last up to 6 weeks. For me there was a need as my lower back and hip was inflammed and painful throughout. The painkillers were not helping as it was a bad flare up. I tend to use them as a needs only and in addition to my other hydroxy and liflunomide. There was a good article in the Lupus News that covered the issue of steroid use .....so if you could ask Paul on here he might be able to send you this electronically. I do know there may be times in the future when oral steroids are necessary but for now I'm trying to avoid. Others may feel different or have a different treatment programme.....but I think you have to follow what is right for you. Hope this helps.
It doesn't take the drugs to induce that feeling, this illness has the ability to do that to all of us on a regular basis. I think that I suffer from a short-term memory loss, I get the same feeling that there is nothing really wrong with me at some point almost daily. I forget that this morning how it was impossible to get out of bed, I forget that everyone else in the household was up ready and on their way out to work/school before I could even bring myself to try. I often wonder if it's the impossible struggle that causes my pause, or even that I am trying to save them the embarrassment of hearing my struggle.
Then there are the days when I struggle much less and set about my day, they are inevitably filled with an optimism that I have shaken off whatever this was and everything will slide back to 'normal' at least for a while. An optimism based in fantasy rather than reality I am afraid, as inevitably at some point in the day it jumps out and gets me, just as if to remind me just how far I still (after 28yrs) have to go to get myself diagnosed and to get on the drugs that will offer me at least a little respite.
This illness will present itself with enough external detractors/doubters along the way, don't kid yourself and join the party...............I know that I have (in the past) but I won't from here in.
I often worry I have the beginning of dementia. The problem is if they asked me one of the tests called 6cit - I would pass easily. Part of my job is to ask these questions. Initially I couldn't remember aspects of it. Now I know it off by heart even in dementia I would probably recite it to others lol
Ask me what I'm at the shop for on the other hand and ill have no idea, lol
Thanks for your reply. I needed to hear from others.
Oh bugger, that's a bit close to home. I was asked by my partner to collect her from the hairdressers the other day and would I pop into the supermarket for a bag of mixed veg. Unfortunately for me the placed was packed so as I walked through the door I panicked (I feel claustrophobic in supermarkets at the best of times), I swallowed my fear and walked in, completely forgetting what I was there for I stood for what seemed to my panicking brain like several moments trying desperately to remember why I was there. It eventually came to me but I forgot what kind of veg I was looking for and so had no choice but to call my partner up. That resolved I forgot what a bag of mixed veg looked like so after having to step outside to calm myself and enable me to make a clear decision I opted for going back in and gathering every possible veg I could find and getting out of there. After getting back into the car and playing myself with a mixture of chastise and congratulations that I had at least sorted the matter with a reasonable compromise, I took a wrong turn in the rest of my mission and got lost.
Just had a few tears, but that's good, except just put a bit make up on to hide my red face in my effort to get ready for trip to rheumatology.
My complexion is terrible these days with a red chin, cheeks and forehead. Then the brown ( pregnancy mask rash) down the right side of my neck makes me look half lizard- like something out of Star Trek lol. Saying that rheumy keeps asking me if I have a rash - so I take it this isn't what she is looking for?
I am pleased to know that others feel the same. It does trick you in to false hopes. I was in the garden weeding yesterday and felt if I could just get a bit more done. My 14 year old came and gave me a help and I looked at what I had achieved and then compared it to what I have done in the past. I did a lot of sitting and looking rather than getting on and doing the job, like I used to but is till managed it. Therefore was I just unfit and needing to do more?
I'm supposed to go back to work on Friday, for a short day. I just hope that I can concentrate because I don't seem able to convince myself I'm not lazy so convincing work is going to be a challenge.
Thank you again, I needed those replies. Now to get ready and see the Nurse
Good luck with your appointment. If it is with the rheumy nurse Karen at the Freeman....she is fab. I had an emergency appointment with her just before I got the steroids.....she is so experienced and understanding. PS: Would be nice to meet up with you if we are ever up there together?
Hi, I'm back. Yes it was with Karen and she was really busy poor thing had her appointments and extras on top. She says to keep going to them until they get CK and inflammation down. I must admit I like to go to them even tho its a fair way from home. I can contact her if things aren't good before methotrexate kicks in.
No....I goggled uk lupus specialists and got two nearby.....one in Darlington and one in Newcastle. Either would have been fine but Newcastle has been very good sofar. It takes me 1.15 each way.....but it is good care and treatment plan. May have to review it in the long term....but for now it's fine. Glad things went well today for you.
I trained at the Friarage. Used to be a Canny little hospital. Not sure what its like now. You definitely chose well. I think dr Griffiths knows her stuff (I noticed her name as the author for a chapter in a book on Lupus) and Karen seems really approachable and knowledgeable.
yes, all the time. Mostly when blood tests are within range and the symptoms can be blamed on medication. At that point I'm definitely thinking - what am I DOING to my body, there's nothing wrong with me and I'm poisoning myself unnecessarily.
But then I remember that I've tried to reduce hydroxy few weeks back and the chest pain that I haven't experienced for a year came back and then a flare kicked off. That made me think - uhhh, maybe I'm not doing THAT well without meds.
On steroids now to stop the flare.
I'm avidly following scientific research into biomarkers for lupus - there aren't any at the moment, so we don't actually know whether we have lupus or not (after all, what IS lupus). I'm wishing they'll find something that will show without doubt that lupus is present. And secondly, I'm wishing that when they find it they'll say I don't have it :). What's life without hope, hey?
And even when you accept this is life, no one who doesn't have similar problems can understand especially the randomness of it. I think that's why I'm dreading going to work on Friday. I will look well. I will smile etc. no one generally sees me struggling up the stairs and then you get are you alright? I just say yeh
Just come on here.....we all understand and get it. I do find though that you may find one or two that really understand. Today my 71 year old mum walked around our small market town with me.....and we plan what we need to get from individual shops so we don;t have to double back and stop for a coffee. My mum gets it completely.....and my family too.. so big shout out for them. I think if people really know you.....they really see the change. At work....get bookmarks from Lupus UK....keep it by your desk/handbag etc and give out to people when they ask.
I got the welcome pack the other day and the poster went up in my room, the bookmarks are out and the car sticker is on the car. Mind I need more since I work in a Gp centre I plan on putting info out there
They try to be but work pressure takes over. From October until end of March it gets a bit crazy and everyone was exhausted this year - not just me!
I haven't kind of said to everyone and then over the past 2 - 3 years and the diagnosis has changed so that I gave up. I have a couple of closer colleagues that see me and know the too much signs now. I think most of them think its depression. And I'm not alone in having that.
I just feel they don't quite get it and I don't want to be forever pointing it out if you get what I mean. On the whole I do a reasonable job and get through the day. I do like my job, even in the horrendous busiest days, but I am wondering if this is it can I continue at 30 hrs. It will start ok. They will be aware but soon the work load takes over and it slowly gets forgotten and more and more things get added to your day.
I know I'm dreading tomorrow and I know I cant moan because I have very tolerant bosses and they have always tried to accommodate where the business would allow. I even know they have given me a short day tomorrow, I just don't know if I will manage. The only way to know is to go and then I have the weekend to recover lolx
Aw......well I hope that it goes ok tomorrow too. It is good that they are tolerant. To be honest sometimes it can be depression too.....as I get it just before a flare up, and just recognise it for what it is and it will lift. Good luck anyway x
Hi thank you for this post made feel better just reading there are others that understand ,been off work since jan . Thought I was feeling better this morning had organised someone to come round and change my bed for me from a local charity as I can't manage to change it myself , anyway thought I was being ridiculess ,so I managed to strip it , change the pillow cases and then the breathlessness started and now the headache and sickness has kicked in , so I am back on the sofa with the dog , picked up the iPad and here you all are I don't post very often I just read , never feel I have much to contribute but I identified so much ,I live alone and have social services assessing me tomorrow to see if they can help me , so I can have a better quality of life and have a home help , I didn't know they did things like that till last week . Any way thank you all again
Good luck with social services. A home help would be brill for all those jobs, like stripping and making the bed, that you start because you think, 'not too bad today', only to find its just that bit too much. My mum, does it too. She's 84 and always been fit for her age. She has been ill recently but is slowly getting better. She also has two groin wounds that have healed well but this combination means she isn't as able as she would like. So I got there the other day and she had started stripping the bed for the home help arriving!!! She decided to leave the rest for the home help. Stern words where spoken lolx
I find this, too. Sometimes I feel fit and think I must have imagined it all and other times, I feel so bad I just have to sleep for hours and even afterwards don't feel that brilliant.
Have had a good spell, but today woke up with bad jaw pain and cracking right jaw/locking intermittently - it was very frightening to speak or eat, but as the day wore on and I ate and drank it seemed to improve.
I also found my left leg would give way and scared me that I was going to fall over. What brought this on? - who knows, but it is wet today - that's how it is - a spell of being OK and then something pops up, can be something I've had before or something new.
I don't take drugs, but do my best to manage it with diet, herbs and homoeopathy, but when I feel good, I think I have imagined it all until I get hit again!
My electro-sensitivity is bad again today - I notice my heart beats going irregular, especially now on the computer.
Also feel very tired and have to push myself - or perhaps I should just give in and go to bed.
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