I want my independence!

I want my independence!

No, I'm not breaking out into a song by Lulu. I am sitting on the sofa with my little dog by my side. She's so faithful and loving and I was suddenly overwhelmed with sadness that I haven't been able to take her out for a walk, just her and me, for a year now. Out along the headlands and along the beach. Or even just round the block.

I long to just mosey up and down the high street by myself, stopping where I want, maybe trying on some clothes, or shoes! How I miss shoe shopping! My feet are so swollen and painful I can't buy anything here to fit me.

I can barely walk a hundred yards now without being in incredible pain and stiffness in my hips and lower back. I have a stick but it's really not helping at the moment.

Sorry, I'm having a real 'woe is me' moment brought on by my doggie's little trusting face.

As you were people, I'll be fine in a moment, I think I just have something in my eye

JoJo xx

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  • I have no idea why the picture has come out sideways! Sorry everyone! Xx

  • You little dog looks lovely Lilac. Have you thought about getting yourself a scooter to allow you to get out. I know you are going to say oh no i don't want one of them,but my dear let your pride stand to one side for a minute. I have two one for the car and one for roaming about town on my own. Now i won't say i like them as i don't,but i wouldn't be without them. I can go on holiday and go almost where i like with my hubby,which without it i couldn't do. I see you say your on your own,well id you have a scooter you can take her for walks and still go shoe shopping. I do and it has allowed me to get out,as before scooters i would be housebound,there are still days when i can't go out,but thats not because of not being able to it is because the pain is too much and i am too tired. So my friend please consider getting one as it will change your life.xxxx

  • I'm new here but I just wanted to say hello and tell you I know exactly how you are feeling. It's very lonely having RA sometimes isn't it? Your dog looks very kind - I'm sure he or she knows why you can't walk them xx

  • Thanks I can see that you are all kind and friendly to each other here.

  • I don't think so. I will keep reading the threads though. Thanks.

  • Hiya, so glad u found us! And hope you get as many answers as I did here and lots of company and laughs with people that understand you xx

  • Empty welcome.Post when you feel able to and you will get lots of replies.We are a friendly bunch of people who all have ra and other diseases related to ra so you will bve in good company, so don't be afraid to post. So welcome and i look forward to hearing from you soon.xxxx

  • Hello empty and welcome hope today finds you okish x

  • Scouser?

  • Hello Empty and welcome to the site! We're a friendly bunch here and for me, I take great comfort from chatting with others who understand. You're right it can be very lonely with this rotten disease. I've lost a lot of friends through it sadly. My dog is a great comfort to me, she's as daft as a brush, always making me laugh and she knows when I'm upset too. I love her to bits :-)

  • What is her name? I love dogs. X

  • Purdy :-)

  • A good name. X

  • Hi Empty, I feel for you, that is such a sad name. Love your profile pic.... Is it your own work? X

  • Thanks Amanda88. I got the pic of a hare online. I feel empty so that's what I called myself. X

  • It's beautiful :). I can't remember the last time I saw a Hare in the wild? I might google it to see if they are getting more rare?! Maybe I'm looking in the wrong places though.....That is so sad that you feel empty I think a lot of us can identify with that. Best wishes x

  • They are rare!!! Especially in Western regions x

  • There are a lot of hares still where I live.

  • That's good to hear! As long as there isn't a lot of "Flares" where you live :)

  • Now you have found us your no longer empty. xxxx

  • Thanks, my youngest son chose it. My Dad (who was a farmer) used to say the word 'purdy' instead of the word 'pretty'. So it seemed an appropriate name for such a pretty (purdy) little dog :-). Xx

  • Hello JoJo, I do know how you feel 'cos I feel exactly the same!! I feel I am in mourning for my lost life. There is so much I want to do, so many places I want to go, but no matter how hard I try I can now only do what my RA allows me to, which at the moment is not much!! Like you I also suffer terrible pain in hips, spine and feet and have tried so hard to walk using my stick, but have been forced into my wheelchair more and more these days, either that or I would not be able to go anywhere. Do you know, I actually find myself apologising for not being able to walk, how sad is that? Why should I need to apologise, I don't know. My husband is suggesting we look for a powered chair. I cannot push myself so it makes more sense but it seems a drastic step to take.

    Your little dog has the most gentle expression, she must be very comforting for you, I am sure she adores you whether you take her for walks or not!! We lost our little westie six years ago and we still miss him so much. We have thought about getting another puppy but not sure if we would cope with house training etc. life is certainly happier with a pet. Our two daughters both have westies and we look after them from time to time, they certainly cheer us up.

    Maybe you should consider a wheelchair or scooter, would certainly help get you to the shops. Take care, lynda x

  • Ah bless you thanks Lynda :-)

    I am still, I think, largely in denial about my illness (especially as I don't yet have an official diagnosis) but this week I have been trying to be practical and have been looking at wheelchairs and scooters.

    Whilst I think a scooter would be more practical, they are way out of my price league, but like you I would struggle to wheel myself in a wheelchair and I really don't want to burden my son with pushing me around! (Plus I'm no lightweight!!) But one thing is for sure I can't manage with a stick anymore :-(

    JoJo xx

  • You can get good ones online for a few hundred pounds. Look in the papers as there is usually some being sold in there as they have a job getting rid of them after someone has died. I paid £400 for my big scooter as the person who sold it said she couldn't sell it. Get your local papers and look in your local shops on the for sale board and you should be able to get one for very little cash,nothing like buying a new one which is so expensive to buy.xxxx

  • Thanks Sylvi, I have been keeping a sort of 'weather eye' out for second hand scooters just lately but they are few and far between in the small ads over here. Also the ones I have seen seem to be very small, for featherweight grannies, and I am a hefty heffalump! (Especially since my last lot of Pred!) I'm seeing my GP in Monday and one of the things I'm going to ask her is if she can help me get a Blue Badge for the car and if she knows of any schemes or clubs where people sell second hand disability equipment such as mobility scooters.

    I think also what has been putting me off is that I feel it's another level of acceptance that I'm really ill and not going to make a miraculous recovery overnight. Tricky one that. I know it. I can even say it. But that little voice in my head keeps saying "Uh huh, not you JoJo, you haven't really got this disease, you'll be fine soon enough" Do you know what I mean or am I just cracking up listening to voices in my head? Ha ha! :-) xx

  • No your not cracking up and yes it is a problem coming to terms with this disease,i don't know that anyone ever comes to terms with it to be honest even me keeps wondering.Look in all the shops locally and your charity shops as sometimes they get them as well. Free papers,freecycle on the internet might have something.Put the word out as well to all the people you know you might be surprised what comes up. When you go into town find out where your shopmobility place as they hire scooters out while your in town. I will use anything if it means i can go out and buy handbags!!! xxx

  • Ooh yes handbags always fit don't they, no matter what size you are! There is a Shopmobility place in our main town on the island so I shall contact them and arrange to hire a scooter to see how I get on with it! Thanks Sylvi xx

  • Forgot to say (brain fog again!) that I adore Westie's and was planning on getting one when Purdy came into our lives. She was a year old when we got her, so already house trained, but she was living with other dogs and very unhappy, they always ate all the food and kept mounting her and she was one very timid, frightened little girl when we first brought her home. For months she would wee as soon as we came home, with her ears back and her tail between her legs, she was so nervous. With lots of love from us and being the only dog in the house, she soon filled out, but even now after 4 years, she likes to take biscuits from her bowl and take them away to another room to eat them. I think deep down she still thinks other dogs will come and take her food.

    She's a Jack Russell crossed with a Border Collie (no, I've no idea how that happened!) and she is a gorgeous mix of both, she shuffles along on her belly like a Border Collie but she shakes her soft toys 'to death' like a Jack Russell. She also appears to have springs in her legs as she can bounce really high!

    Maybe you could get a rescued Westie that would already be house trained? I know I couldn't cope with a puppy no matter how gorgeous they are! :-)

    JoJo xx

  • Hi Jojo, Very good advice from Sylvi about getting a scooter to get mobile again and I absolutely agree with her, we still need to get out and about, it's survival !!! I bought a sterling sapphire scooter 12 months ago off e bay, the only problem is it thinks it's a formula 1 racing car, frightens me to death, it's so powerful. It has two channels to put your feet in so does not require much knee bending, great for my gammy knees. But taking it around the shopping centre is a bit dangerous as it's so fast, I can foresee myself demolishing one of the aisles soon!, I have had some laughs and near misses I can tell you, just hope the CCTV cameras have not been watching!, Do you know I have driven a car for thirty years, but definately need L plates on my scooter.

    As I said earlier I have been borrowing power chairs from shopmobility and love them, I can get around unaided, (most important when husband has a shopping strop and is moaning). I had hoist fitted to car for scooter so can use that for powerchair as well, as they are very heavy. I will continue to try and find one on ebay or similar but maybe time has now come to treat myself to a new one as lack of mobility is dreadful now and is clearly never going to improve. I have had a manual wheelchair for long time now and it has certainly given us a few laughs over the years, my husband is a very dangerous chair pusher, goes like a maniac, never stopping to let me look at anything. He is also very deaf and the only way I can get him to stop is by putting my hand up. You can imagine the scene, him going round the shopping centre like the road runner, me bawling at him to stop, putting my hand up etc., we should be on the telly !!!

    Try and get sorted with a scooter or powerchair, don't put it off for as long as I did, and if you can, try shopmobility as it gives you the chance to try before you buy. As Sylvi says earlier it is hard coming to terms with loss of mobility but it is necessary in order to have some kind of a life. Take care, lynda x

  • Oh Lynda thanks that mental image gave me a good giggle! Yes both you and Sylvi are right and I need to take control and get myself mobile again instead of wishing, wishing, wishing to be how I was before. Feeling more positive today girls (and fellas!) Last night was just one of those moments that overwhelmed me xx

  • Lynda see my reply about scooters.xxxx

  • Hi Sylvi, thanks for you ideas, read my reply to Jojo. I am having a watch on ebay for powerchair, there's quite a few scooter but very few chairs unless I want to travel further to fetch one, which I may have to consider. Hope you had a lovely wedding week and recovering from all the hard work, lynda x

  • I got a really good second hand scooter some time ago, cost £200 but very good for getting round our village, but I have recently taken to borrowing a powerchair from the shopmobility at our local shopping centre and for me it is more comfortable than a scooter and a lot easier to get round the shops. They are very expensive to buy new, so again trying to find a good second hand one, but proving to be difficult to find one.

    Brought a tear to my eye reading about your little Purdy, she is lucky to have found you, you are very caring for her. My westie was called Basil, he was more human than some humans!! We have Canine Defence rehoming centre not far away and called in a couple of weeks ago and lo and behold, they had 2 westies, a boy and a girl but both had been taken, otherwise we would have tried for one of them.

    Hope you and Purdy have a good weekend, lynda x

  • Ah you too Lynda and thanks for the info about the power chair, I'll see if I can hire one from our shop mobility place over here.

    Maybe you could put your name down to be called if any Westies come in? I had my name down for a Westie but Purdy came along and her need was greater, plus we fell in love with her immediately :-)

    Thanks again, take care

    JoJo xx

  • Thanks Scouser, much appreciated. I just sort of got overwhelmed with emotion last night. Just felt my Purdy was looking at me with her big amber eyes and saying "Why don't you take me out anymore Mum? We used to have such fun" when in reality she was probably thinking "If I look pitiful enough Mum might give me a biscuit!" ;-) xx

  • Hi guys, read all comments here and I'm the same as all of you, every post is how I feel....I have grieved for my ' lost life' I've been In Denial, prob still am,feel I'm a failure, body has failed me......I've had pain since age 24,I'm now 53, although had times where I managed and coped having my beautiful children, but the last 12 years have been a complete nightmare..... I decided one day, whilst struggling to walk in our beautiful park with my young boys about six years ago, after Hip resurfacing that I'm having a rubbish time, and every step was dreadful......saw a rather young lady in her scooter with her dog running beside her, I thought how fab is that the dog being trained to run along side her rather large scooter.....it got me thinking, spoke to my hubby and he said let's go take a look...........I decided I needed one for the car, so got a lightweight Rascal, even had Alloy wheels LOL, perfect, although rather scared to give it a go........now I am lucky because we live in the countryside, but not far from the beach with a fantastic promenade, I have to admit I felt silly and embarrassed being so young and using what we usually see the Elderly using them, BUT, OMG, it felt amazzzzzzing....honest, it did, I even got waves from some of the regular elderly that use them LOL. I didn't realise it was a ' Scooter club' of sorts LOL, anyway, it gave me FREEDOM, wind going thru my hard once more, and without Pain....Lilac, you must have a think about getting a scooter! you can get your independence back, I promise you.......mine has been a lifesaver.........I don't use it much, but do when we go for a drive or shopping in town along the Prom......I've also discovered that there are many younger people using these scooters! and far better than a wheelchair............you can get cheaper ones! but I started off new and bought a top of the range type! and cost me 8oo, sounds a lot But, I knew this was to last me many many years......however you can get really good ones for around 300 at the proper shops that sell them..........take a friend with you to try or family, you will have your lil dog Purdy running along side you in no time..............also, you will want to go out, why? because it's also great FUN!.........I love going down slopes and brings back part of my childhood when I use to be on my chopper bike when 11 years old.........I come home feeling light hearted, because it's enjoyable to use.........my best friend needs one, but won't, as she feels that is the last straw and a failure I getting one....how wrong my best friend is.........Tc lots love Jill xx

  • You do make it sound like fun rather than a struggle Jill! I will have to bite the bullet and get one I think xx

  • Oh honey I feel your sadness. I used to have a dog, a beautiful black Labrador called Oliver. I miss him so much but there is no way I can have another...my living arrangements would not allow it anyway. I've read about you using a scooter that seems a wonderful idea if it is viable for you. My best friend had one for years she loved it...she used to bomb up the street. I am no where near as bad as you...I feel ashamed for moaning...my heart really goes out to you and I can see you are a kind person with the love for your dog. Think about the scooter and I hope it changes your life like it does others. I wish you well. Maryx

  • Thank you Mary, I have to admit the real difficulty with walking has only come on in the last few weeks, although I've had a walking stick since Christmas. I think my 'wake-up' call happened at the hospital a couple of weeks ago when I couldn't make it from the car park to Radiology.

    A 5-10 minute walk at most usually, but it took me the best part of half an hour and I felt like a clockwork toy winding down, slower and slower. A kind admin lady saw me struggling and got a porter with a wheelchair for me. I was relieved and grateful but so, so embarrassed at the same time :-( xx

  • Oh bless you..I'm not there yet, I do have days like that but not on a regular basis I did have a time a few weeks back when I couldn't stand, there was nothing in my legs the knees went into a locking position..I fell on the floor but there was no pain at the time...that came afterwards, that was quite scary...this is where this site helps because I've learned that a lot of you are far worse than I so it makes me sit up and take stock. Do think about that scooter it will allow you to go to the lovely places you love so much....don't go out late at night though, I wouldn't advocate anyone to do that!!!!!! Take care to you and your lovely dog..picture was lovely. Maryx

  • Thank you Mary, you take care too and thank you for your encouragement :-). Xx

  • Hello Jo Jo

    Sorry to hear that you are having such a difficult time. Getting out an about is definately good for the spirit. If I were you I would seriously consider hiring one first to see how I got on. As sylvi said it would give you back your independence. You little dog is such a cutie, also you lifeline to the outside world.

    Sending some hugs your way.

    Love Carole

  • Thanks Carole, I think it is the way to go whether I lIke it or not. Will make life easier in the long run. (Run? Oh if only! Lol) xx

  • Hiya Jo Jo, I know so how u feel, it was the worst thing for me going from climbing hills to lying in bed in pain the next week. I coped by talking here so I didn't feel so isolated and when I go out I hire wheelchairs or mobility scooters as then I can get out and keep up with every one xx

  • Well I always think of you as Superwoman Allanah :-) so if you're telling me you sometimes need a wheelchair or a mobility scooter then that makes a feel a bit better in a bizarre sort of way! Honestly this illness is such a b*tch isn't it? Thanks Allanah, much appreciated xx

  • Lol no same as all of us, just do it with help !!!!

  • You poor darlin.....I know exactly how you are feeling. When I first started with this awful disease I couldn't figure out what was happening to my body. I was so confused, I was loosing all of what made me me! I had no energy. When I did go out I just wanted home again I was so exhausted. The pain seemed to just take over my whole body in the space of a few months. I couldn't comb my hair and had to sit on a stool in the shower. I soon stopped going out at all and lost contact with my friends. I could see the look of shock on their faces when I did see them. I had lost two stone of weight and looked twenty years older.

    I loved my social life. I was always up for a party or a get to gether. I enjoyed a drink and to dance and all the craic with my friends. That all came tumbling down on top of me within months. My partner said he couldn't take the change of life style and he left. I felt like my life was coming to its end.......I'm not afraid to say I was suisidal on more than one occasion. I too missed just wandering around the town, going from shop to shop. All the things I took for granted......I would crack up at not being able to keep my wee bungalow as clean as I once could.....dirty skirting boards, I would go into a depression just looking at them! Now if I get them cleaned then I had a good day......if I can't, well maybe tommorow.....

    Iike many of you I have my dogs......there were and still are on the odd day times when I can't take them for a walk. My dogs have always been rescued dogs and so there is a connection with them and me......we both know what's it's like when the world and life isn't always very good to us. They love getting to the park to run around but they seem to know when 'mum' isn't up to to today....

    But, time has passed, about two years now and with the help of my wonderful rheumatoilogy team I am back on my feet and moving around almost normally! I did it for myself......I have good neighbours but it was mostly myself, it had to be because myself is all I had at the end of the day. Don't get me wrong......there are nights that I go to bed crying and wake up crying in the morning but I no longer want to die......I want to get back as much of life as I can. A lot of that is because of my two abandond 'babies'.......who would look after them? Who would love them the way I do? If I wasn't there they would mourn for me too, they would want me with them. So, there are days I get out of the bed just because of them and then I'm glad I did get up.

    Thankfully those days are getting to be less and less. I'm looking forward to Halloween, it's a great holiday here in Ireland. I've been asked to a friends house for Christmas dinner and I love Christmas too. I put up a few decorations in the room I stay in the most. No one will see them but me and the babies but that's alright, they are for us to enjoy.

    So life isn't always terrific but it's not as bad as it once was and for that I will be eternally gretefull to my doc's and nurses.

    The really awful times do pass and for the rest of the time we just have to get on and do our best. I have learned to go at whatever pace my body has decided for that day. I try to keep people/places that stress me out of my life. I'm good to myself but I keep it simple.....me and the dogs, a walk in the park almost everyday! I treat myself with something nice to wear or to eat, Dime bars......I've learned to be good to myself and to take it easy......one step at a time, everyday is a new day......I take my pain relief and do what the doc's and nurses advise me and I didn't want to die anymore. Life isn't perfect but it's not too bad either, for me.

    I do really hope this awful time passes for you soon.......don't they say that nothing last forever? Please let us know how you are getting on. XXX

  • Jean,where abouts in ireland do you live? I have a sister who lives in northern Ireland thats why i asked.xxxx

  • Thank you so much Jeanabelle. Yes I've had days when I think what is the point of all this if I'm not going to get better? But on the whole I don't feel like that, just ticked off really. I know I have to face up to the changes in my life. I don't have a partner as such, but my long term boyfriend has become more and more distant and I'm lucky if I see him for lunch once every 6 weeks or so now. But in a way I'm glad I was never reliant on him because I think he would've hightailed it out of here sooner if I had 'needed' his help. My youngest son lives with me, but I hate relying on him, he's 19 and should be out and about with his mates not stuck at home helping his mother out.

    Anyway despite the rain, I am feeling more positive today thank you xxx

  • Hi Jo, how are you ? I can totally understand how you feel, my dogs are so special to me they are truly part of the family, my bigger dog would put the Hoover over and make me a cuppa if she could I'm sure! :). Sounds like you have a great bond with Purdy though and she will understand why you can't walk her in her own way. I think you've been given some great advice about Scooters though, when my hubby had an Op on his ankle we hired one so he could still take them out, our smaller dog would hop on it when it was raining or he got tired :). If you could maybe get one it would give you some of your independence back? Best wishes x

  • Hi Amanda I'm feeling much more positive today thanks. Not sure what came over me last night when I wrote my post but I was feeling incredibly sad and low. Yes I've had some very good and very helpful advice today and I'm going to speak with my GP on Monday about it all and then see if I can hire something from the local Shopmobility place to try out and see what suits me best xxx

  • I love dogs and your dog is so cute! I'm sorry I don't know your story but If you are undiagnosed then I assume your not on meds?You may well get your independence back. Lots iof good meds out there seems your early stages (ish) aswell. Things may change around for you and you could lose the stick for a while I'm just saying.If you wanna buy a scooter go for it though X

  • Hi Kittykat! No I'm not on any meds yet apart from anti inflammatories and pain killers. My RA factor is consistently negative and I think that is what is holding the rheumy back from the diagnosis. Although I do have a strong family link with RA as my Dad and at least 3 of his siblings have had it. Rheumy was mumbling about Fibro, lupus and MS last time I saw him but wouldn't be drawn on anything when I questioned him about it. I guess if I get a scooter and I do get better on meds then I can always sell it? Think I will see if I can hire one for now anyway just to see if it helps (it can't make it worse lol)

    Xxx

  • Hi Jojo

    I know exactly how you feel!

    I have a cupboard full of shoes I can no longer fit into & I know I must get rid of them as it upsets me to see them.

    When I was much younger & in no pain, I used to look at older people with their ugly,comfy shoes & think I will never wear things like that - now I know why they do - I am now one of them & I am on a constant look out to find shoes that I can fit into & that dont bring pain after wearing them for 5 minutes.

    I am trying to hold on to my job, but my back, hips & feet kill me every day & I try not to mention it to my workmates -they are all 20 or 30 years younger than me & they tell me their aches & pains & have no idea about my RH. I have tried to explain in the past, but they are young & not really interested & their eyed glaze over :(

    My gallows humour is my only saving grace. I am glad your little doggie gives you love & comfort, what a little sweetheart. You are not alone & this website is indeed a life saver if you need to vent & have a heart to heart. be kind to yourself & do things you can that make you feel good & bring joy to your day, not always easy, but you deserve it. xx

  • Perri i to have a weird sense of humour and at times thats the only thing that has kept me going too.xxxx

  • Oh Sylvi yes, a warped sense of humour is a must I think! I'd go nuts otherwise! My first husband was in the Royal Navy and the armed forces sense of humour is very dark, but I also think very necessary. Life is too short to be serious and sensible all the time. I was very down last night, but you have all lifted me today, thank you xxx

  • My hubby is ex-army i should say a retired veteran he did 24yrs.the forces sense of humour is like no other is it. I like saying one thing and know full well that there is another meaning to what i say and watch the fasll out from it it is so much fun.xxxx

  • Hi Perri! Gosh yes I have some lethal black patent 6" stilettos which will never see the light of day again, well certainly not on my feet anyway, but I cannot bear to part with them. I was the same as you when I was younger, looking at older people's clumpy shoes and thinking 'No way, I will ALWAYS wear gorgeous shoes' Ha! Little did I know....

    My workmates are a similar age to me (I'm 49) but they glaze over too when I try to explain to them what is going on with me. In fact I have been off work with this for a year now and some of those same workmates will walk past me in the street as if they haven't seen me, despite having worked alongside me for over 10 years. I was so shocked and saddened at that.

    I do find this site to be a great comfort and sounding board, it's true. It is soo good to talk to others who understand your frustrations and pains. It really does help. Certainly I have been very encouraged today by all the lovely comments help and advice from everyone, it's definitely helped to put me in a better frame of mind today xxx

  • I am glad it has lifted your spirits somewhat by reading other replies.

    It is very sad when people walk past who were supposedly your friends & workmates - could this be guilt on their part because they have not bothered to see if you are ok? Who knows? - Let us hope that they do not find themselves in your situation in the future. People who are not going through the pain themselves do not understand. I can remember when I used to love shopping & could spend hours trying on clothes & carrying home heavy bags. now I need to check out where there are places to sit down! Today I went to a shoe shop with my husband as he needed work boots & I found myself looking for shoes with no buckles - velcro is my new friend & there are actually some really nice styles - I favour a slightly wedged heel & lots of cushioning support for my princess & the pea condition. I also have to remove labels & from many of my clothes -

    Recently I was also diagnosed with an underactive thyroid - It is also linked to autoimmune conditions, so it did not surprise me in the least & I have started taking medication for that.

    I was diagnosed a few years ago myself with RA & still not on medication, only anti-inflammatory tablets & pain killers. My doctor advised me not to as I am severely allergic to many forms of medication - I do however feel marginally better for taking the Thyroid medication - that I do have to take for the rest of my life.

  • Hi Jojo,

    You've caught and expressed just how I feel on my 'mourning for my old life' days. The joy of being able to walk free and easily is such a loss isn't it? It's such a simple thing - but I too long for the freedom of the beach and moors with a dog companion again.

    I think that the stage you are at right now is possibly the most difficult to manage. It sounds awful but you aren't bad enough to warrant 'full on' intervention in managing your condition with all the equipment provided (not that you'd want to be in that position). On the other hand, you aren't well enough to enjoy life in the way that you used to.

    Taking the next step to getting the aids that you need is, in my experience, difficult both financially and emotionally but as Sylvi pointed out there can be ways around it to make it possible and it really does open up more opportunities.

    I bought an 8mph scooter from ebay for £150 recently but it is also worth trying preloved.co.uk or gumtree.com. Do a bit of research about what you want to use it for also as even £150 can be a huge investment if you are on a low income so you want to get it right. Shopmobility gives you the chance to try out how easy it is to manouver around the shops and sometimes have 2nd hand scooters for sale There are also often local government community OT's who can show you the different types and options available and possibly point you in the right direction for grants.

    Here in the South West there is a scheme called 'countryside mobility' which gives you the chance to hire 'off road' scooters in locations you wouldn't always be able to access (woods, parks and coastal paths) and Purdey could learn to become a carriage dog. A couple of ladies around here walk their dogs with their scooters. One woman has 3 border collies which is way to ambitious for me!!!!!

    I'm still waiting for a slope to be built to enable me to get full use from my ebay bargain scooter (can't wait) but have also put my name down to be a potential fosterer for older dogs who have lost their owners and need someone to love them and keep them out of kennels until they find their forever home. It must be such a shock to the poor loves. Their needs are less physically demanding so would suit those of us who can't really walk far (because they can't either) and they already know the basics of house training etc. It really is a win, win situation for a good cause because, like others here, I know I couldn't manage a puppy but still long for the companionship of a dog oldies.org. are desperate for more fosterers.

    Keep strong. There will always be dark days but when a solution comes along boy oh boy how much more we appreciate those little things that we used to take for granted. xx

  • There is a scooter for £350 on preloved site in hook hampshire if anyone is interested as i have just had a look.xxxx

  • Hi Creaky! Yes I have seen a few good bargains on eBay today, my deal breaker is because I live on an offshore island the cost of getting something here usually outweighs the bargain in the first place (which is highly annoying)

    I love the sound of those offroad scooters! What fun to be able to take Purdy into the woods, she'd love that I'm sure! Also how wonderful that you are going to foster older doggies! I think that is a wonderful thing to do. It must be so bewildering for them when their owner dies or can no longer cope with them, what a wonderful scheme, I hope you get a lot of joy from it :-)

    You know back in the good old days (last year!) I would hare through Marksies everyday, as that is the shortcut into town for most office workers over here, rushing along, tutting to myself at people walking slower or "getting under my feet". I used to think I've only got an hour to do my shopping why don't you slow coaches do yours in the morning or afternoon when I'm at work? I even used to joke that the elderly and mums with Pushchairs should be banned from town between 12 and 2pm! I was only joking but boy has karma delivered me a swift kick up the jacksie! (I do try to avoid town at those times though, simply because it is so busy with office workers like I used to be rushing around at top speed!) As my Dad would have said to me if he was still here bless him "That'll learn yer!"

    I hope you get your ramp put in soon so you can enjoy your scooter and please keep us posted about your foster doggies! :-) xx

  • Hi Jo-Jo, I'm late to your post and everyone else has already given you great support and advice already - but I just wanted to say that like everyone else I understand your predicament and empathise with you. It is a mind-shift to adapt to loss of mobility, but a very helpful rheumy nurse once said to me [when I was struggling with myself about getting a disabled parking permit] "think of it as an enabled parking permit" it will enable you to have your freedom and independence when you need it:-} And if you're having a good day you can leave it in the glove compartment.

    As for your little dog, she's loved and cared for and has a good home - dogs are the only animals that can read human emotions so she understands how you are on any given day. My 2 Springers are bouncy, active dogs but they know when I'm flaring and just lie quietly next to me on the days when I'm not so good.

    Take good care of yourself:-}

    Cece x

  • Hi Cece and thank you. Enabled parking permit, what a good way of thinking! I like that very much. Everyone today has been so kind and helpful it really has cheered me up.

    Yes you're absolutely right, Purdey knows exactly when I'm sad and down, she nuzzles me and settles down next to me. I'd be lost without her xx

  • Hi, I totally understand-I have the same problem-not being able to take the dogs for a walk and not being able to go shopping-it's depressing to say the least,unless you suffer with this no one seems to realize what we go through.Do they think we want to be like this??? Also I am 52 with 2 sweet grandchildren whom I can't take anywhere as I cannot walk a job I cannot do anymore-it really sucks to say the least-just wanted you to know I really feel for You-I keep hoping for better days ahead for all of us-what really hurts is I have a sister in L.A California which I have not been able to visit,just can't do that long trip-maybe someday soon there will be a break through with some miracle drug and we can all get our lives back.Sorry, Enough boo -hoowing from Canada!Take Care!

  • Hello!. It is so hard when other people don't understand isn't it? When I found this site last year, I was so relieved to find other people with my symptoms and fears and worries and not only that but people who had already gone through it and could sympathize and offer help and advice. Some days I don't feel up to commenting but I still love to read everyone's news and the support everyone gives each other.

    Hope Canada is not too cold yet! xx

  • Hello Lilac,

    I've just spent the last half hour or so reading this thread and it's made me go through so many emotions, sadness for you and your lovely dog, tickled pink by some of the humour, but most of all it has made me feel that I'm not alone with this awful disease. That is the best thing about this site and making some lovely friends along the way.

    I really hope you find a scooter/chair very soon and then you can ride along with your lovely dog on a lead and the wind blowing through your hair :-) :-)

    I have learned to love my scooter these days and I call it my spare pair of legs that are less shapely Ha ha ha :-) My husband is wheelchair bound (electric) and you should see us when we go shopping in Milton Keynes, we laugh a lot together, but I still miss my independence and going from one shop to another (on foot) trying on lots of clothes and shoes and I expect I always will. love June x

  • Hello June

    Yes my goodness I certainly started something here with this post didn't I ? I've had so much support and advice and yes, you're so right, it really does help to know you're not alone.

    I'm glad it's helped you too because it has definitely helped me :-)

    Xx

  • Well hi from me to only just manage to wrestle the computer off my stepson!!! He's waiting for the new ones to come out wonder how long that will take. So hope you start to get help soon. So Love the look of your doggy so sweet and really pleased we have cheered you up. Coz this dratted RA is not nice love Christine xxxx

  • Thanks Christine :-) xx

  • hi lilac from the good old isle of man

    i can see why you are feeling a bit down in yourself not being able to get round that island I LOVE THE BLOODY PLACE TWICE A YEAR ME.

    But you never know with this thing its ups and downs and even the doctors you see dont fully comprehend the things that you are going through to compensate for any disability but next week you could feel a lot better

    me i could not walk 20 feet properly but at the moment im cooking a bit more on gas but not without being pig headed and pushing it.

    so just hang in their and see how it goes you will find lots of people on here to review your problems regarding the rumi and ways round it sometimes.

    which reminds me i must put a blog up to tell people how ive gone on with the people ive seen YOU WILL FIND GOOD DOCTORS AND BAD DOCTORS THROUGH YOUR TIME WITH THIS THING dont get to dispondant cause all i could do for a year is sit and watch in the back garden. (WHICH REALY REALY MADE ME DOWN)

    now i take the prospective if i wake up in the morning im putting me pants on and up and at that day but by night i will be a little achey

    hope ya get some relife and walking the dog soon i will be on that island tt week and gp week even if im on a streatcher .

  • Hello Minka! Aha so you're one of those mad bikers that invade my peace twice a year are you? Ha ha great fun! :-) Did you come over this year?

    You wouldn't like it today though, lots of standing water and a landslide on the Mountain near The Bungalow, they've even had to cancel the bike race today because of it. Pedal bikes that is, not the vroom, vroom kind ;-)

    I used to ride pillion a few years ago but I couldn't manage it now, unless they resurface the TT course with pillows!

    I do miss my weekend morning walks with the dog along the headlands, then Peel prom and maybe a hot dog or burger at the little kiosk on the breakwater by the castle. You know the one! Walking round the outside of the castle can be a slippery adventure though even when you're sure footed. Knowing my luck I'd slip into the harbour and get swallowed by a passing basking shark!

    Thanks for your cheery post, you did make me laugh though, I've seen lots of people leave TT on a stretcher but never arrive on one! Hope you're fighting fit come next June :-)

  • hi lilac yepo ive been going since wait for it 1966 so im one of them die hard ones and yepo know where ya mean for cup a tea at the cafe near the castle thats where i go and watch the sun go down after the other side for some food

    my wife does a lot of walking and when she comes over with me for the tt this next year im planning to see if i can get someone to do a walk with her round from the top of the hill at peal along the pathway where all them seagulls lay ther eggs anwhere they want beutifull cost line that so if ya know ayone that likes walking or in a rambelesrs club think she would be up for that min june on a race day off let me know

    remember the old saying my gran used to say JUST BECAUSE THEIR IS SNOW ON THE ROOF LAD DOSNT MEAN FIRE HAS GONE OUT and she was crippled up with rumatoid from age 60 .

    but like i said lilac ya nevere know this time next year your will be walking or a millionair del boy

  • I can really relate to this. We've just resorted to Sunday afternoon drives which makes me feel old too until I lose myself in the landscape. Just to share what I'm doing, while I wait for enbril I'm seeing a physio and doing very little exercises a bit like pilates. I'm having to pay for this - once a month. She showed me the right way to walk with a stick etc. I'm starting from a very low base and I know that with RA progress can be uneven. But I've got to do it. Hope you can too.

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