I do get so very disheartened when I read the posts, all so 'its the end of the world', 'the end of my life', I cant do this' and 'I cant do that'.
I do not belittle anyone with what they are going through at all, it IS a long struggle, It CAN be hard work, and
You CAN do this, You WILL do this. you DO have the strength to get through it.
YOU are the only one that knows YOU and YOUR body.
BELIEVE in what you CAN, DO, HAVE, LOVE, LIVE.
Its YOUR LIFE GET OUT THERE and LIVE IT! (with sun protection).
I Believe in ME and that I CAN and I WILL, and I DO, weather doesn't stop me.
Yes I have the pain, the worries and the trials BUT I GET UP and GET ON. I KNOW my body and I listen to it daily. I WILL CONTINUE TO DO as I am much as able for as long as I AM able, hopefully being ABLE to do whatever it is for longer.
Try not to despair, smile and find something POSITIVE every day.
I believe in ME nothing else.
Written by
kazp
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I get what you say BUT - at the end of the day, despite of positivity and smiling and gritting teeth and everything, the disease is still here, it is still dangerous and regardless of how much we wish it not to be so, it still affects our lives.
So yes, let's enjoy what we have got because life is short and everything but let's be realistic about it too.
Lupus - well that's where its all 'pie in the sky' why, Its still NOT understood, there are NO proven causes, lots of theories and scare stories, however the internet has a myriad of conflicting information about Lupus, mostly and extremely annoyingly from those that don't have it ! How do they know ? I DO know as I've lived with Lupus for 31 years.
Did you know that you can self diagnose Lupus online ? Is that madness ? Lupus is serious if not properly treated, has far too many attachments and complications, we are all individual and we are treated as such. Alas depending on the postcode will depend on what your NHS will do for you.
The individual suffers if they choose to, there are so many alternatives that don't give in to the suffering of those with any ailment no matter how severe or mild it is.
I am passionate about the real facts of lupus and we all NEED some positive thoughts in our lives. I 'm alive, I have food, water, a roof over my head, so many people do even have this. Lets think of them while we 'suffer'.
Let's agree to disagree - just because others suffer in a different way to us doesn't make our suffering less real. This suffering isn't of our choosing but how we deal with it is. I guess what you're trying to say is that we should choose to deal with it in a positive way and I fully support that. It's just not always possible.
I'm 2 years into this - maybe after another 29 years into it I will also feel that I can beat it and trust me, I'm looking forward to that. For now, however, my body reminds me on a daily basis that this disease controls it and regardless of how much smile I plaster on my face and how many pats on the back I give myself, I'm still barely being able to function.
And although my heart goes out to so many others who suffer in a worse or different way, I still have to deal with what happens to me - because that is my immediate reality that I have to deal with.
But as I said, we each have a view about it, the views don't need to coincide to make this world work. As long as we accept that each of us has the right to express that view, however different that is from ours.
Totally agree its so refreshing to be able to agree to disagree. You will over vast time I hope trust you again.
I do put on a very brave exterior, for me I feel i have to, that's me and you are you.
As you say 31 years is my life, I was finally diagnosed after 3 years of numerous testing when I was 9. I suppose I don't know any different from Lupus, so I have grown with it.
Oh joy, a positive post..... The glass is half full!!! I have nearly come off this site as it can be more depressing to read some posts, Than it is to have Lupus......cheer up people.... :-)))))))
I am really angry by what you have said. People share their feelings with others who are in similar positions and receive support from them, that what this site is all about. To label these as "so depressing" is disgraceful. Maybe you are on the wrong site, or maybe you should start one of your own.
Sometimes this is the only place people can come and be honest about how they feel: many of us do what we can to keep up a brave face to the outside world. Don't make people feel guilty for coming here to tell the truth about how they feel. Yes, it's depressing sometimes, but quite often if you read down a trail you'll find the original poster taking comfort from others and coming out feeling brighter than when they went in. This is a grim disease and I'm thrilled you've found a way to deal with it, but it takes time. So from my heart I say to everyone on this forum: if you need a place to let off steam, or to list your woes, or just to have a rant or a wail, I at least am here for you.
That's my point but from the other side as many people just want to moan and have a rant, we are all entitled to our opinions no matter how different they are mine just happens to be positive to show you can.
I do take offence that you state I am making people feel guilty though for being honest that's all I am doing !
Wowsers to this post.....and an interesting point to make:)! Before CTD I was always a glass half full person and I really try to continue with that.......but here's the BUT coming......... For me there's the 'face' that I put on for others to see that shows I am positive and doing the best I can. Then the flip side of this is the side that panics when like this week I have 2 invites out and a friend coming tomorrow. The point I'm making is it is a daily task to make sure I stay positive as my first thought is ....will I be ok for a friend visiting tomorrow....will it take it out of me so that I can;t go out to a picnic in the park tomorrow night? Will I be able to sit with all the family when out for a meal for my youngest daughter's engagement this week without stiffening up, feeling in pain and quietly suffering? Will I be able to attend my husband's work 'do' as I couldn't last time because also in a flare then. I also try to be positive when my hubby comes back from work so that I don't say the daily difficulties or that I have had to put heat pads on. So I have to find different things to talk about but YES my first thought despite being positive is to bury what is going on inside. So yes....I love life, I love seeing beautiful flowers, playing music, watching a film,love being with family and just being.....BUT I have to work on positivity when it comes to any kind of planning as that fear factor creeps up every time. I have to work on finding positive things in a day that has been difficult. Even from a glass half full person.....it really have to work on this inner voice that knows the real hardships. An interesting post and I love it that we can all say how we feel openly and honestly. xx
Thank you for being so positive, its wow well refreshing to get a likewise post.
The brave face is a must isn't it, I don't like to be seen as incapacitated in any way shape or form on the outside, hurts like h*ll on the inside some times though. Glass half full indeed.
You describe panic and anxiety within the daily 'torment' of who you are, I am the same, I wont though let it get the better of me most days. I can and I darn well WILL. Some days though I just have to give in ! hate hate it so much.
Having grown with a CTD from 9 years of age its part of who I am, what I am, its up to me.
PS don't forget the the ice packs, rub in heat ans freeze creams and sprays ! Chin up x
May I ask what rub in heat you use. Does this help in the likes of hip inflammation and inflamed sacroiliac joint too? What sprays do you use too. I only use sweet heat bags that I put in the microwave sofar ...oh and a good old fashioned hot water bottle that lasts through the night. Any other tips much appreciated x
Supermarkets own as they don't smell as bad as Deep Heat and Freeze. They are not as good though. Cheaper and in a smaller tube, but that's easier to squeeze out as I can't use sprays due to poor grip.
I also use a wheat heat pad and a lavender wheat pad, which helps me relax.
Hot water bottles yes indeed old fashioned still works well and I take them when I am away from home, as there will always be a kettle !
Do you have a heated mat or an Electric blanket, set in 1 its good for making my joints more moveable.
You can also get smaller pads from Amazon, there are also magnetic ones !!
Hi Yes, thanks it does. As daft as it sounds I didn't think of deep heat before but will try now. Also Yes I do have an electric blanket and couldn't manage without it as some mornings when its painful to get up I put it on and lie on y hip....things we do!! x
I agree with purpletop and carcrashgal, on this one. Sorry but this site is to celebrate and commiserate. Because no one understands our daily struggle, it's here that we let off steam sometimes. We are all individuals, with our own complaints and have our own way of dealing with this. I have posted/replied to other members giving details that my own family do not know, about my health, thoughts, and feelings. You have virtually lived your life with this disease, so really, know no different. My brother has lived his life with the most awful problems, and takes it on the chin. To the outside world, I do too. It's here on lupus uk, that I seek solace from the daily grind. If I wanted 'clappy happy', I would stick to Facebook. Wether you choose to take this personally, that's up to you. But I am just saying my opinion, and whilst I often show more humour than tradegy on my posts, incidentally, there is space for all emotions. I do however admire your positive approach to life.
As you so rightly comment 'Sorry but this site is to celebrate and commiserate.' and 'there is space for all emotions. I do however admire your positive approach to life.'
I choose and want to be positive and like you i have typed things that only I know, As only I lives with Lupus.
I like to help and have helped many on here with alternative ideas and am so very happy that I can.
This site helps us all no matter how we are feeling due to the fact that we KNOW what we are going through, happy of sad.
I have just caught this thread late but it's struck a chord , especially tonight as I've just done my first run in months. I gave up because it hurt too much the next day. But then I got to thinking, hell, everyone at my age hurts after a run. I'm 55 and have just ran 4 miles. I am pretty damned chuffed. I KNOW I am lucky. I love life ! But I have always had a positive attitude and a glass half full philosophy. It has got me through divorces, breast cancer and now this. Keep smiling and you know what ? If life throws you lemons, make a bloody big gin and tonic. Love to all x
See this is what we need half full glasses, you've been through so much and yet you still keep going through the pain, struggles woth more and more determination and courage.
Hooray ladies , some fab responses.... PMA, positive mental attitude!!! Yes I know we ache , are sore, tired , and so fed up moaning about aches and pains .. ( p.s my hubby's a saint ) , we do have a lot to contend with having Lupus... Good days and bad.... And yes this is here to share and help.... But Kazp your my kinda gal.... Half full and ready for a top up...... :-))))))
Positivity all the way even though I have just got up (its 1030 am!) Needed a to relax with the 4 cats, and also i couldn't move as I had been wedged in by them, alas now i ache all over, onwards and upwards !!
Hi again kazp. Mrs glass half full here. I'm going to run again today as a way of taking back control by doing something I like to do and defying my body! It still aches from Thursday's efforts but that's because I went straight into 4 miles when I hadn't ran for 6 months or more. Typical me. Like you, I don't like my body dictating what I can and can't do and I will not give in to this condition without a full scale fight. I will keep you posted.
Hi again. I went at a slow pace but i managed. I must say, I am aching and burning all over but the mental buzz is outweighing the physical hurt for now. I feel like the old me. Just come back from writing group but that's a hobby I really can manage as no physical strain involved but another way of holding on to me.
writing is one thing I really struggle with, very spidery handwriting, even typing makes my whole arm, hand, fingers and wrists sore. I do it though hence why I'm still able to do it. I've worked out I can do just need lots of rests and sitting down when walking about.
Isn't it great to feel like the 'old' you. Like you its the buzz that far outweighs the pain, anyway that's what oramorph is for !
You hit the nail on the head there; it's about knowing your limits and resting. Boy am I paying for those runs but I want to carry on, just at a much slower pace. I know what you mean with writing, my wrists and forearms hurt, but, like you, I rest frequently and eventually the job gets done. Writing group is great. We have turns reading out our work, then the rest of the group critiques it. No obligation to bring anything along. I've met some interesting people whose work varies, so I get to listen to all different genres of texts, including some pretty poignant poetry from a couple of members who've quite clearly been through a lot of pain. It helps get things in perspective. Yes, my body hurts but I have personal and social freedom and the love of a good man. Life rocks!
Hi Kazp welcome to my world of positivity! It gets me through from one day to the next and I try very hard to help others but I thing often they think I am either mad or just don't understand them, I am so glad there is a fellow lupie who understands where I come from and makes the most of every waking day. I have just come bake from a motorcycle rally down near the Kent coast where I had plenty of Factor fifty in my pocket so that I could join in with every body else.
That makes two of us I have been away at a motorbike rally, I have been a biker for years, I have been aviding the sun and have been having a personal sauna walking around wrapped up in my scarf, gloves, jacket and thick fabrics that block UV rays. Then you get people who like to state the obvious and say, "Aren't you hot like that?" and I feel like replying with something like "Oh is it warm today?" but normally suffice with a comment about keeping my pores clear! It was so good to read you post and find a fellow positive lupie.
All the best and keep well especially in the threatened heatwave we may get,
I tend to wear lots of long sleeves , a scarf like you, looking for a cotton one now, and I stay in the shade when I walk, its strange everyone else wants the sun and there I am tree hopping !!!!
White has one major flaw though - we have 4 cats and dirty paws don't mix well !
Oh I know what you mean the clubs that I ride with and a few other friends are all very good and totally understanding of my health, and they have great patience with me if we are going on long rides we normally discuss routes and when we will need to make a "personal needs stop" whether that be so I can get off and bend and get back on or certain others need a cigarette or we all need bodily functions at services it is all about communications. The biker community is a wonderful one to be involved in I have been part of it for years they are so supportive, when I am in hospital I end up in a room of my own normally just as well as the normal two visitors to a bed rule would not be stuck to, there is usually a crowd of black leather and all the bike parking bays are full! The staff in one of the hospitals I am a regular in are used to me as I work there - just as well really.
What with the way that bikes and trikes are adapted for people with often chronic disabilities things can be much easier and there is and association called National association of Bikers with Disabilities NABD they make things much easier. It should be on everybody's list of things to do in their lives.
A slow process BUT one that you can over come, with lots of time, patience and understanding,I find the hardest to cope with is others that don't know, make annoying comments, arghhhhhhhhhhh.
Hi white also has another flaw if you are photosensitive........ it does not block UV rays very well the darker the colour the better the blocking power. Oh and it won't show the paw prints, I know that feeling too I have an adorable short haired tortoise shell that I rescued. We are starting to sound like peas in a pod! lol
Absolutely, I am glad that works for you - it is not enough for me I have ended up hospitalised because I am so bad a few times before I realised I needed to wear gloves all the time and get rid of the UV emitting bulbs indoors I did not wear them and the skin came off my hands I looked like a burns victim and could do nothing what was worse was it spread over my body which is now scarred so maybe that is why I have to be more careful. I certainly make you right about the storm! We have just had an amazing night of them the lightning was beautiful and the thunder was deafening, I am hoping for some sleep tonight it is a little fresher this morning.
I have noticed scars on my arms, shoulders and a permanent redness V shape on my chest now, my scars are from, ironically, being in hospital for 5 days last year with something that I 'technically' cant have as I have lupus !!!!, I sensitive to the lights INSIDE!! as well as out !
Its so so much fun (really) going shopping making sure I'm covered up with a cap for my eyes, gloves and sleeves, in summer, as as you've mentioned the comments, we have to laugh (well what should I do otherwise?).
My fabulous Hubby and I always laugh about what I can and cant wear (prepared for every occasion), which is easy as we are caravanners), do I have my pharmacy with me, and did you know it doesn't matter if you're wearing a high vis top with a hi vis stick people will still walk into you !! ??
At first glance it could be mistaken for sun-exposure through a V-neck garment , (dermatomyositis is photo-sensitive like lupus), but the V is actually defined by nerves in the skin which crossover on the chest.
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It was so good to read you post and find a fellow positive lupie.
Smile
The darker side of lupus #11
Dealing with family/friends/general life whilst investigations are pending - Please help!
