So I have to be really honest here..... here I am so blooming disabled from this disease, cant walk even a few paces, cant take meds to help (long story see previous posts) so up until this latest flare I have been a very good actress, where i glam up get hubby to park outside of restuarant walk in and pretend nothings wrong - My way of pretending I am normal as I feel it gets me some kind of normality - I eat, get out, dress up (only lunchtime die by 5pm!!!!) then come home and rest
We are fortunate to own a home in spain (not a good idea as totally sun intollarant) but now have the car done with dermaguard and rock up in my gucci glasses and sun hat!!!!
But since the latest flare I cant walk at all, as pain so bad in knees and I am so dizzy I fall and I have hughes (untreated until I see consultant) so cant breath after walking . few steps - But I cope and just get on with it.
But heres the thing - I cant act anymore, cant walk into the restaurant, cant get to the loo, cant go to my husbands flying club and just sit and pretend as I have to use a motor scooter.........How do I get past this as I just want to be able to walk those few steps to pretend to others I am normal.
I just dont want all the questions - perhaps I should put a plastercast on my leg
No joke - I am really strong but cried all day today as someone clicked their fingers 5 weeks ago and the last of my tiny bit of mobility dissapeared
I know I may seem shallow and Im not saying 'Poor me' but just need some help as to how to lose the ego !!!
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riannabri
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I'm sorry your struggling, it's a real mental shift to get your head around, and no two people approach it the same way. You will have to find a way that works best for you. If you'd rather make something up as a reason to be in the scooter, then by all means do so. However, perhaps it might help if you didn't see it as something you are 'confined' to - but something that will allow you to do more than you did before.
There's a real prevalent attitude, even in the medical profession, to see mobility aids as a form of 'giving up', of not 'being normal'. But I have friends who have never not been in wheelchairs, to them, it IS normal. Their wheels are their legs, end of. Implying they're not 'normal people' is othering, but they hear it a lot...because of the above idea.
So I was a bit ahead of a curve as I have seen the micro aggressions they put up with on a daily basis from people who think they are 'normal' for walking, and the people with chairs aren't 'normal'. It was a reframing of language for me, and therefore I didn't see my powerchair as a huge failing of being 'normal' on my part.
I started using a powerchair last year, and while it took a bit at first to get used to Xavier (yeah, I totally named it), I absolutely love it. I can go out with my fiancé on walks in the woods (I couldn't hobble 50 meters before without needing to turn round and go back). We go to restaurants and coffee shops and he can hold my hand (which he can't do if I'm using crutches). I personalised my ride, and I love using it. It's not something I am 'bound' or 'confined to'. It's my legs. It's my WINGS.
Do people act a bit jerkish? Unfortunately, yes - the Dutchman hasn't had this kind of experience of hanging out with someone with illness or mobility aids before and it drives him bats. 'It's like you're invisible, in this 150kilo chair!' he snarls. 'How can people not SEE you?!' I've had to explain to him, yes, of course they see me, but they're trained to see me as 'other', as 'Not Normal', so they think looking away and pretending I'm not there is better. There have been a few comments, but I'm a cheeky mare and when I jump up out of the chair saying 'OMG, I'm CURED!' (because, shock, you can use a wheelchair and NOT be paralysed) the looks I get are absolutely PRICELESS.
But I'm evil like that. And sometimes people even think the joke is funny, and I make a few friends out of it. The jerks are out there but thankfully aren't the majority.
The thing is, and forgive my directness, this isn't about using a mobility scooter, is it? It's about the illness itself. It's about having, up to this point, been able to pretend that nothing's wrong. That may work for a while, but it doesn't work forever. Sooner or later, your body is going to stop you, and force you to have to take a good, long, uncomfortable look at what's going on. Yes, I know people have told you there's not much to be done...but there's always something that can be done.
Always.
However you wish you proceed forward, I wish you strength, and I wish you grace - not with other people, but for yourself. For giving yourself a little compassion, and to eventually realise that you're still you, no matter how you rock up to have that night out on the town.
Yeah, I'm struggling with the same situation right now.
After being stuck at home for the past 8 months, my feelings of general unwellness have eased enough to think about going out at last. But I'm a very different person to the one who last ventured forth. Now, I'd be beaten in a 50 yard dash by an arthritic tortoise on valium.
Anyway, I have decided to go out to a gig on Monday night, complete with some wacky walking aids and an inflatable seat (its a "standing only" venue). I'll wear a funny hat. "Out and proud" will be my motto. My approach to the venue is going to be that it is their job to provide a good experience for everyone, including those of us who have wobbly legs or whatever. I will report back!
It isn't shallow and it isn't surprising. This is a real bereavement - you have lost "you" and you are also losing your independence - you think. But using a scooter may become the difference between really struggling whatever you do and being able to use the scooter up to the last bit and THEN walk. Silvergilt's post is brilliant.
I don't have problems now - but a few years ago I was so p^**"d off at not being able to go anywhere and do anything I had decided if I hadn't got somewhere by xmas I was going to get a scooter. Soon after xmas I threw the crutches away (well, into the cellar). I'd done all the homework though! Last summer I was walking through our village and a Canadian couple were sitting outside the pizzeria with the scooter I'd fancied - and we got chatting. I knew if I got one it was going to have to do hills - we live in the mountains. He assured me it would - and he was a BIG guy! He gave me the card for the company, it lives in my sunglasses case for future reference.
OH has lung problems, he already struggles when he has a cold, eventually he will need a scooter. I envisage maybe have a matching pair so we can go out for long "walks" together It is a folding one - it will fit in a small car boot.
We happily accept glasses when we don't see too well. Perhaps less happily we accept hearing aids. So why should "walking aids" be any different? I know a few people in the same boat as you - and all of them eventually got scooters and it has opened up so much for them - they can do things, relatively independently, and can go out somewhere they would have walked in the past and a car cannot go.
Or you and OH could try a jousting match with walking sticks on matching scooters. I can neither confirm nor deny doing this with an elderly chap at a national park till his wife busted us.... *whistles*
Neither of us need walking sticks - both fit enough in that sense, but his lungs don't play the game and my muscles wilt as soon as hills come into the picture. We can both walk miles on the flat! But we live in an alpine valley and along the river gets a bit boring after a while...
Yeah I understand! The Dutchman said we should pick our music for our first dance (he threatened to choose ABBA, I threatened to divorce him within an hour of the I Do...), and I got a bit wibbly as I thought to myself 'Oh...our dance. I won't be able to have our dance'. His best friend in the Alps wants to spring for us to stay in a ski lodge for the honeymoon but he didn't know I use a chair....oops!
Accessibility can be a pain in some places, but I hope you can manage to arrange something that works for your area and see some new terrain.
Good luck with adapting.....everything changes. You may even enjoy your new scooter, it's your life with or without the scooter. With regard to losing the ego...I think it's already diminished as soon as you recognise it
Bright blessings
TTxx
I have so much sympathy for your feelings. I spend a lot of my time in a position of denial, giving everyone the impression that I'm fine, up for everything rather than limited by autoimmunity. It helps that I'm not presently that limited physically - so can get away with it.
But last year I had such severe balance issues and couldn't face using a stick. Then someone lovely from this community suggested that I customise canes to suit my artist persona. This unleashed a whole creative project of buying old sticks from charity shops and customising them using buttons, sand paper, enamel paint and chammy leather. I now have ten different canes which I refer to as my mood sticks. They are so whacky that I've had people say they almost envy me for being able to sport such eccentric or stylish items.
There is much scope for customising sticks, crutches and even a mobility scooter or car. This is a way that I've found helps me keep my head up high. If people asK why I'm using a cane I just say "I have a rare form of autoimmunity" and they generally don't enquire further - but lots of people I know seem to have heard of Lupus at least.
In my opinion difference should be celebrated where possible and disability is really just another type of difference. There are always ways to turn bad lemons into passable lemonade once the grieving period is done - but you have to let yourself grieve for as long as it takes. It sounds as if you are doing just that. Xx
I too am considering buying a mobility scooter. My mobility is so limited that I have been stuck in for months. I didn't mind too much in the winter months but with Spring and Summer approaching, I want to be out and about, naturally. I go swimming so I do get my exercise but have to drive everywhere. I miss not being able to walk in the fresh air, see nature, flowers etc. I have been quite honest about it to friends, family and the Dr's that I feel isolated at home alone. The Consultant has supported me in buying a mobility scooter to get me out and about. I am quite excited about the thought of getting my freedom back. It is all about improving my quality of life. I see the scooter as just a mobility aid. I am not embarrassed to have to use one. I don't care what others will think. Some friends and family members did say "don't get one until it is your absolute last resort, or you will lose your mobility." I totally understand why they would say this to me because they care. I replied, if I hadn't lost it already, I would not even be considering it! The point is, I have lost it, so I need some help with getting out and about. This is the way to do it. I don't have to worry about justifying it to anyone anymore, so I am just going to do it I think.
Good luck to you too. We have to be strong. It is a big decision and life changing event, but hopefully for the better!
I wonder why they can't see it actually improves your mobility if otherwise you can only go where a car will go? I hear it so often. If you are stuck in the house - you haven't GOT any real mobility.
Though I HAVE come to the conclusion that when offspring or peers say something that uncomprehending, it is often because the offspring can never cope with the concept of poorly parents and peers realise they are also ageing...
So I got the Solax Genie its remote control and folds down in to small suitcase size. Just got Dermaguard fitted to the car so I can go out in that now (can no longer drive but at least Im Out) so Im going to listen to all you guys have said, we are off to our home in Spain next Saturday for a few weeks so with my big hat on, lippy on, being just the girl I was I will proudly rock up to my favorite restuarant in style - Just have to work out how to get to the loo as the Spanish don't do well catering for the disabled.
THANK YOU everyone and when I have a wobble with my ego I will remember all of your support and kind comments xxxx
Riannbri, bless you, your post is so honest, not to mention brave. I am in the same position as yourself, slowly but surely Lupus has chipped away at my body, and I am really struggling with my mobility. I would say to you, the words shallow and ego do not apply to you, anyone who can write as eloquently as you have, does not have an ego, what you are doing is mourning the loss of the person you were IMO, and let's not forget, flares end, remission periods can be had, so for now, why not look at this as a grieving period, make the adjustments to do what you need, to work for you, and only you (with hubby input too of course).
I have Hughes too, and you may find when you are under treatment, your mobility may improve, certainly my brain fog lifted.
I totally understand your weariness at having to explain what is wrong with you, it is for me, down to perception, after all, in the main our disease is unseen isn't. What I do now, is if I am faced with question, I just dish out leaflets to the questioner, works for me.
I have today had to have a cardiac monitor inserted, as there is a thought Lupus is causing abnormal heart patterns, even the attending nurses were totally unaware how Lupus and Hughes can affect us.
Some days it is very hard to put a positive spin on our conditions, but I like to think I belong to a very unique club, you only have to read some of the posts here, we are some of the most stoic people around.
We all have to find our own way to cope with our feelings, and I hope some of our messages can give you some tips, but know this, you are doing ok, you may not think you are, but by putting one foot in front of the other.
oh LupusKaren thank you for writing this, I am smiling through the tears as once again you are all so supportive - for the first time I know now I am not alone - Its so strange and not once have I come across anyone in the post feeling sorry for themselves, we are so honest, brave and funny !!!! in a way perhaps this is the thing that makes us 'us', this suffering enables us to see what truly matters, who truly matters........
Again if I could meet you all I would hug you all to bits as this support means the world xxxxx
Your so very welcome Rianna, how are you feeling this morning? Are you ready to put just one foot in front of other (or wheel, sorry couldn't resist, but you did say us Lupies were funny :)) Sending one massive virtual hug your way which I hope envelopes you for the whole of the weekend. Stay strong, because you are stronger than you realise.
My heart breaks for you! Losing my mobility and going from athlete and dancer to someone who can't even do her own dishes and who hobbles down the block has made me breaking down crying on more times than I can count. Not being able to move and, like you said, having to pretend in public like nothing's wrong just plain sucks!
Big hug and know that we're here for you. And, LOVE rocking the shades and the hats. I've decided that buying lots of fun hats is a least one upside to all of this
Well, I am back from Spain and had a WONDERFUL TIME, still sick as a dog and Of course I did not go in the sun but to open the blinds and see the sun every day was heart lifting. My symptoms did not change but the lifestyle is so good for me I changed when I go there. I spend the morning chilling then getting ready for Long Lunches and chose restaurants with umbrellas/total black out blinds. I rocked up on my new white Genie Solax scooter that everyone loved and talked about as it is like a transformer as it folds down on its own.
I had a trendy little Block out umberella, wore big hats and spent time every day having Menu Del Dia and a Big glass of Wine
So thanks everyone for your support as I am so comfortable using the scooter now I cause chaos and everyone loved this crazy women from essex, bombing around Puerto Mazarron on her trendy scooter.
Oh and to top it all off we found the house of our dreams after a 2 year search so we can spend even more having the lifestyle that we want - I have to say that i realise now that the sunny days and relaxed lifestyle defo improves my well being
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It is a folding one - it will fit in a small car boot. 
How do we cope?
How to cope when appointments are so delayed. 
I feel such a mess right now
Still experiencing a bad flare
Reaction to the sun... again! 
