lupus, pain in the you know what !!: I can honestly... - LUPUS UK


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lupus, pain in the you know what !!

scoobydoo1 profile image

I can honestly say from reading the posts and talking with people who have lupus and my own experience, that this condition is a pain in the a**. on one hand there is similarities with all of us, on the other hand there is so many differences and individual " quirks". how can being so ill be so hard from start to finish, not just the illness, firstly you have to get the medics to understand your ill, get the tests, get diagnosed then get treated and hope it helps and you don't get a new doctor who does not agree what was said by the first doctor. then theres the emotional stuff, some of us get depressed, some anxious to the point you don't go out, or in my case have your mobile with you when you go to the bathroom because your scared to death you will collapse on the bathroom floor and be there for hours. learning to accept that the life you once had has gone, this is a new you and new life. then you have all of the family stuff, you worry about them, not being able to look after them as you used too, provide for them and make sure they are all ok.

then you have work, not sure whether im lucky still being able to work, no I am lucky as many of you guys cant work, and yes it is bloody hard.

then you have all of the other stuff in your life friends, trying to explain that what you once did you cant do any more, damn trying to explain what the illness is in the first place, having the possibility that they cant accept the new you or the illness.

and just to give you that last kick in the guts its sunny and beautiful outside and many of us cant go out because the lupus will flare.

as you can probably tell im not feeling my best at the moment, but I am Lucky, I am here, with a good support network and have good medics looking after me, and options for treatment.

it could be a whole lot better, but for sure it could be a lot worse :P hope all the lupies are ok. mark.

11 Replies

Yes, you've summed it up very well in a very funny way - I like the going to the bathroom with the mobile in case of collapse...

Still, as you said, it could be worse.

At least it isn't raining.

scoobydoo1 profile image
scoobydoo1 in reply to Purpletop

sounds silly but that is gospel honest truth, that's how this flare started, me getting ready for work, then pain in my left leg then chest then me kissing the floor thinking oh crap that's it then just feeling like crap ever since, still do the mobile thing, goes everywhere with me, my brother takes the mick he compares me to the doomsday preppers, wont leave home without my phone, my diazepam and my emergency card in my wallet :P

Sorry you so rough at the moment, made me think what I take out with me.. tablets for pain, nausea and vertigo, migraine, anti histamine, plus cream, anti acid, eye drops... so scared that I will be without something I need...don't need all at once!!! but am I crazy?

Went to work yesterday with cough and chest pain, very foolish ended up a complete wreck and in tears then felt even more annoyed with myself i hate being incompetent ! Home today and its getting better, at least I can read your post and smile:)

Scoobydoo, you summed it up well, we face so many changes and challenges as a result, it's actually a wonder more of us don't go loop the loop, lol. It is really difficult to adjust to the necessary changes as a result of this illness and to help those around us understand that we have/are changing as a result, and not by choice, i'm sure some of my friends think i'm 'just' depressed as they can't 'see' the illness. Whilst they accept at times I have to cancel or change plans I'm not sure they feel i'm genuine.

But hey ho, life is good, things could be worse, and I always try to remember there are many worse off than me.

Take care, hope you pick up soon,

Oh dear you are on a downer right now, oh well here goes to try to pick you up a bit. I too get fed up when people go on about how "lovely and sunny it is" no not if you are a lupie but I have some nice gloves, a scarf that fits in with my style, summer leathers if I am on the bike or plenty of well styled jeans and clashing denim jackets if I am walking and plenty of factor fifty cream for any exposed skin. I have found some fantastic bits in charity shops and on ebay so have personalised my look - if I have to wrap up then find something to look good in. Yes it gets hot but some very considerate lisencing people changed the law so I can go and cool of with a refreshing pint of black current and soda for just over a pound in most places or a coffee in winter, the shopping needs doing anyway so might as well get it done.

You are so lucky being able to work I had to give up and cried for weeks as it was my vocation and I had planned to do it forever., I am soon going to be starting to do some voluntary work for three hours a week as that is all I can manage right now but might be able to do more one day.

As for doctors I certainly know where you are coming from with your frustrations and found a way round this. Talk to them and say this is my body please listen to me and talk to me NOT at me I am not stupid!! When you go to see them have a list of ALL the things you want to say and as questions and if they try to hurry you say excuse me I have not finished yet - it is your right to be seen and sorted out - you are working paying taxes so are paying for that service so get your money's worth!

Have you got grab rails around indoors and any other mobility aids that might make life easier for you? If not it might be worth asking to be refered to an occupational therapist, you don't have to go through everything you just tell them what difficulties you have and they visit you and suggest ways of making life safer and easier, I no longer have a bathroom I have a wetroom with fold up seat on the wall and nonslip flooring in there and a plug hole in the corner of the room. It has made life so much easier and I no longer have home-helps come in to put me in the bath like I used to and I have various grab rails too.

True friends will understand that your brain freezes and your mouth goes into overdrive anyone else is just a bystander, just have a laugh at silly things you do and come out with believe me it helps you get over doing these things.

Good luck and I hope you feel better about things soon

Madmagz x

Well said Mark!!

Brilliantly put and so well understood by all who have lupus I can imagine. I hope things improve for you soon and thankyou for putting this post up and summing it all up so succinctly xx

Yes, thanks Mark - those words hit some lupie buttons - and made me think of someone who also has a habit of taking the mobile 'everywhere' ..including the bathroom.

A word of warning: don't drop it in the loo she did!! ;)

Brilliant post, one honest and spot on post. Xx

Agreed, it is definitely a pain in the behind and we face many challenges and difficulties. I do hope that for you things improve soon x

Brilliant post mark, sums up the tumult of feelings that have raced through my own head.

Like Suranne I carry a medicinal sack in my handbag heavy enough to be weight of a small child - I know this as it sets my car seatbelt alarm off if I put it in the wrong place on my passenger seat lol!!!

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