This is my first blog post. I've still not seen a Rheumy due to my GP letting me down (my chest specialist diagnosed me after tests, and requested for my GP to refer me to a Rheumy, except my GP can't 'find' my test results! But that's another story...)
I'm finding myself turning more and more inwards, and becoming more and more anti-social and hiding in solitude since I was told.
It's been a really hard year of struggling through illness - when I had the pneumonia/pneumonitis for half a year, it was easier to explain to people why I couldn't do things, or wanted to be at home - in fact I didn't have to explain - my constant horrific coughing and clutching my chest in agony was enough to make everyone realise I was really sick.... now the chest problem has cleared everyone expected me to be better, like any other person would be.
But I'm not better. I'm exhausted all the time. Lying in bed is enough to murder my hip sockets and they can be swollen and agonising all day. My EDS (joint hyper-mobility) is playing up so much that turning the bath taps is enough to dislocate the joints in my wrists and my ankles keep collapsing on the school run....and of course the sun has kicked in so my face is a mess!
I've found myself avoiding people more and more - I have one friend who repeatedly asks every day at school 'so are you better yet?' and doesn't seem to want to know me until I am. Another friend was so incredibly self centred that I can't go near her because I'm so angry - she was so self absorbed she kept dropping her kids off without warning (I have three of my own, one with autism!) not caring if I could get off the sofa or not, so she could go out.... three more friends are mildly annoyed with me for missing a big night out... and the mums at school are avoiding me since I posted on Facebook, because they seem to think Lupus is contagious and can't be dissuaded.
I am self employed as an artisan crafter and photographer, and when my smallest goes to school in September I'm afraid I will just be completely sealed off from human contact until the evening times! I'm not sure what I can even do about it... it seems to be a cycle of feeling unwell - hiding - feeling better and wondering why everyone has disappeared/doesn't understand - feeling unwell - hiding...
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Blueberry
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Hi Blueberry, I think alot of people are ignorant when it comes to lupus, I must admit that before i was diagnosed I had only heard of very briefly, I have since read and keep reading as much as I can to try and understand it. I can understand about turning yourself inwards, but remind yourself you are as good as anyone else, but you will know who your true friends are, as they will be with you all the way. try and stay positvie, I know its easier said than done, and I'm sure we all go through the same feelings, buts since finding this site, at least I know I am not alone and that there are people out there who do understand, so keep your chin up and just take one day at a time
Hi Blueberry,
it is really hard you do fine who your true friends are, im a raving extravert an so too long alone doesnt help, but then sometimes too poorly to do anything. i have avoided partied after a bad spell because i know people will say How are you and i hate feeling like a stuck record. i have now learnt to ask for support from certain friends web sites like this. and at parties i say change the question.
my friends have learnt this is code for not good but this is not the place to talk about it. really good friends have leart to ask if i have anything to look forward to nice happening. this can be as simple as coffee with a friend. sometimes i cant answer it positively.
Hi Blueberry,,,Hey like you say when people can see we are ill,,like you with pnuemonia or if we had a pot on a broken are etc..they are "OH dear and hope you are well soon!Lupus is a disease still even so many people have never even heard of and even when we try to explain alot of people and i know my friends have all tried to be interested ,,seem caring but because they often don't really want to understand they decide i must be imagining the imaginary pain.My Lupus also affects alot of my skin so i often get,,oh at least if its just a skin infection,,thats not too bad for you,,or if i am having a bad flare then they simply keep away,,god know's its infectious you know!!!
You will find in time those people that really care about you and matter in your life will be there for you,,the others are un important and you should waste none of your valuable energy when you have some and effort on these people. y ou will finds lots of good support here,,this is a wonderful site.
Thanks guys! Dragon - people *really* are ignorant about it aren't they even the people who say 'Oh my friend/sister in law/ cousin has lupus!' say ridiculous things like she's fine she's just a bit tired! o.O ...There's one woman who thinks it's a mental health problem and asks me if I'm having a good day or a bad day, have I been taking my medicine??? (In that tone of voice reserved for people with mental disabilities) o.O!!!
Tatty yeah, I find it helps so much having something to look forward to. I find my worst times are when I can't answer that question, or if I can with a resounding 'NO!'. And right now I CAN say YES for the first time in nearly a year thanks for reminding me.
Thanks Jinny. You're right I am getting really bored with people expecting me to just be better....or taking the micky out of me for being such a 'wuss'. Jeez. Worse are the people who come up to me to moan about their ridiculously small complaints while I'm standing there thinking 'please stop talking so I can lean against a wall over there'! But then I feel mean for feeling annoyed at them hehehe.
Hi Blueberry - wow! I really hope you feel the empathy on this Blog Site.....
No. 1 positive move would appear to be: change your GP! I guess this would be tricky if you are registered with a single-handed Practice, but most surgeries these days have more than one, and there's no rule that says you have to go and see the same one. You can even request to see a different Consultant if you are not happoy with the one you are referred to. Having been a Health Centre Med Sec for lots of years (before I had to take early retirement because of recurrent illness - I didn't know this was because of the SLE then) - it is sometimes a good plan to ring up and ask to speak to them, instead of waiting until Armagedon for the GP to follow up..... (!)She (or he) will chase up the Rheum appointment for you. Explain how low all this is making you - hopefully she/he will be sympathetic.
No.2 - to echo what other Lupies have said. This illness sure sorts out who your REAL friends are! Other people also have their personal challenges, so sometimes it may seem as though they don't care - when it may be they have concerns of their own, that use up their energy and time. Do you have an autism support group near to you? It may be you can make a valuable input to that......My neice's son has Asbergers, and she has made some really good, supportive friends within the group.
On the "zombie" days - I feel really USELESS as a human being, but I know there are lots of worse conditions. It's a bit like trudging through thick mud, but knowing there is lovely warm water to bathe in, if I just wait...... Hope this helps!
There is supposedly an autism group, but I think they must have disbanded because their contact details don't work. Maybe I should set up a new one?! The autism is a battle for us all on its own due to the stupid education system. It's a bit like being Hercules at the moment lol.
I do tend to get different GPs quite often as you sort of call for an appointment and get any GP thrown at you unless you specify - I must have seen all of them. I think I'm with the most well meaning one at the moment (doh!!!!) I've just got to keep bugging them all until they do something (again, some more!)
Hi Blueberry - this is my first post on here also! I just wanted to say that you're only writing down what the rest of us have all felt at some point - take heart; you're not a recluse, you're just in the adjusting phase of this illness.
As others have said, you'll find out who truly cares for you at times likes this, and as unfortunate as it may be; sometimes some people will just never "get" it
I actually blogged about this a few months back - feel free to have a read.
Hey you are unique and I remember when I first got Ill, it hit me so hard, I thought I was going to die, I couldn't lift a mug to drink my mum and sister took care of me for months, I couldn't get out if bed, I was in pain, I gained weight I just wanted to be left alone but you know what 2 years on I am in control, I pushed my go who pushed the hospital and finally I was diagnosed, I remember crying out of sheer frustration because you can't see lupus bit how to explain what was going on was so difficult. Listen, you have to help yourself, you have to fight it, the doctors will help but you have to push them. Please don't retreat from life, you can live with this I promise you. Be strong xx
Looby has said it all i agree that days can feel like a very deep mud bath!! I have just had a week of a dreading feeling of loneliness and madness!!
I have been diagnosed now for 3 years and i must admit that i now know that i will feel like this for awhile and then a light bulb is switched on and i feel normal. Well as normal as can be?
I suppose i am lucky with friends as one suffers the same problem and the others are medically trained but i find family do not understand as i look so well most of the time even though i could be feeling like cr..
I do hope things change and you start feeling alot better. I can put up with the aches and pains but its this brain fog that i dont like!!
Hi Blueberry I have been diagnosed with SLE for 30 years and I have found it best to go to one specific GP this way you don't have to keep reminding them how ill you are. I know how difficult it is when your Dr looks at you with credulity when you explain how your feeling, you just have to keep at them till you get it sorted. I'm like Jello the aches and pains I am dealing with it's the brain fog that is so frustrating.
Hey, thanks everyone, I'm really touched! I'm sorry I went a bit missing there for a moment. My neuro stuff's having a party and I'm a bit gone with the wind!
Lizzy - that blog just really struck a chord. Yes. *Nods in entire agreement!*
Thank you so much Pammy! I will email you this evening when I get back from school run! xxx
Jello - yeah, a lot of what you said struck a chord too - my neuro symptoms are the ones that make it hard - how do you concentrate when the room's spinning?! How do you explain to the nursery manager who lets you in that you might look drunk, feel drunk, sound drunk and have a flushed face like an alcoholic but actually you're ill! These last few days my hands have been shaking as well. So I look like I have the DTs!!!!! And the seriously stupid things I say when I'm befuddled FFS!!! Lol. Have to laugh or I'd cry *hugs to you*
Thanks Emmamarie *hugs back* I think I've found the most helpful Dr, she's the best of a bad bunch...but we live in a shoddy area so... I kind of have to live with it! 30 years. Wow.
So sorry you are feeling this way. Lupus is a difficult disease to deal with for us, and complex. I have dealt with it for 40 years. The sad truth is some people get it and some people dont, and some never will. I have finally come up with an explanation that seems to get some people to understand, I say it is like having the flu's aches and pains, jet lag and feeling like you haven't slept in three days all togehter at the same time, and you feel like this ALL OF THE TIME. Since I have had to deal with this for so long there have been many people who have cycled in and out of my circle of friends, sometimes simply because that is part of life, but sometimes because they don't get lupus. Another thing that seems to stump them is that some days I feel well enough to do something and then they wonder, well how come you went out the other day but today you can't? And you look fine to me? So I say well, you only see me when I am having a good day. One time I showed someone at work how my finger just swelled up seemingly all of a sudden and she was shocked. But then she kind of got it.
Another thing to remember, and this applies to everyone, not just people with lupus. You don't have to explain yourself all of the time. If someone asks you out, and you say no I can't go, you do not have to explain yourself. Really, you don't, just say I can't go, or just too busy. If they get nosy, change the subject or ask them a question about themselves. We all get tired of telling people we are tired so stop!
Blueberry, forgot to mention, that in the 40 years since I was diagnosed at 13, I have gone into remission from a very serious first bought with lupus (almost died) to times when I could do a lot. For example I studied Chinese and lived in China for 3 years in the 1980's (long before China had all of the mod cons they have now). My doctors thought I was nuts to go there with all of the icky things I could have contracted (I did get bronchitis a few times and also intestinal worm, super gross, lol) But my parents adn family are so supportive. It is good to push the limits occasionally, but of course I was feeling well then, and I think I was lucky that I didn't have a super big flare while there.
And I have been lucky in the past few years to have discovered a very good Doctor who specializes in lupus, but he treats ME as a person with lupus, not as a disease, if you get my meaning.
Hi Blueberry, I was diagnosed 2 years ago and i've been on such a journey over those 2 years, and part of that was withdrawing from life for a while so I could come to terms with lupus. I think it's a process.
Initially I had to 'let go' of any friends and commitments that were too demanding for me (saying 'no' to people was something new for me) and those that couldn't take a hint I had to make it a bit clearer -that I just couldn't be there for them anymore however much I wanted to be. It soon made it clear which relationships were healthy and who were the 'takers' in my life!
2 years on I have some really great friends who are understanding about how I feel and willing to listen to an occasional moan on a bad day, and those that don't understand or don't have anything nice to 'give' me seem to have moved away! And that feels good.
My life feels so much more manageable now i've been through the process of deciding what is important enough to me to keep putting energy into even when I'm ill (I can still do my artwork -and a set up a local community food growing project). I've also learned how to keep my expectations realistic, and not to say 'yes' to things people ask me to do (I learned the hard way that I can't rely on being well enough to do the things I committed to in advance!).
It's exhausting to have to keep having to explain to people that you are ill and therefore can't commit to doing a certain thing, so I am learning to create a range of plausable excuses (like "Oh sorry I'm already booked into a course that day" or "Oh what a shame I can't make that evening event, I'd love to come but I've made plans already")! I agree with what has been written about not feeling you have to explain yourself all the time.
Isn't this site brilliant!! I also find facebook useful as it means I can chat to loads of people however rubbish I feel that day! It's really great getting to know you all here too -it's so supportive and helpful. So please don't feel isolated Blueberry, we are here!
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even the people who say 'Oh my friend/sister in law/ cousin has lupus!' say ridiculous things like she's fine she's just a bit tired! o.O ...There's one woman who thinks it's a mental health problem and asks me if I'm having a good day or a bad day, have I been taking my medicine??? (In that tone of voice reserved for people with mental disabilities) o.O!!! 
thanks for reminding me. 
I am getting really bored with people expecting me to just be better....or taking the micky out of me for being such a 'wuss'. Jeez. Worse are the people who come up to me to moan about their ridiculously small complaints while I'm standing there thinking 'please stop talking so I can lean against a wall over there'! But then I feel mean for feeling annoyed at them hehehe.
Absolute mess - oh and no one cares and I am invisible
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