Hi Fibro ppl
I am have a lot of problems with my feet and legs,they swell and I get very sharp pains in my feet knees and hips, Iv been thinking of going away for a few days and also thinking about hiring a wheelchair as I'm having problems walking for any distance. But I don't want to give in to this either what would you do ppl? How many of you use a wheelchair ?
Thanks for reading
GC
Grannie crochet
Hi granniescrochet
I am so sorry to read that, and I genuinely hope that it does not give you too much pain and discomfort. Julie's (my wife) feet and legs swell up really bad with her Edema, and she has to use a wheelchair. I know that she is not happy about having to but it does give her some semblance of independence and the ability to get out now and then. I know it is a very difficult and delicate issue and there are no true right or wrong, or easy answers but I sincerely hope that you find the answers that you are looking for.
I want to wish you all the best of luck with whatever you decide to do? I also hope that you have an understanding person who will push the wheelchair as my wife complains that people do not understand that they have walked past things before she can say ''I want to look at that!''.
All my hopes and dreams for you
Ken x
Theres a sign you can put on the back of your wheelchair saying "i appreciate offers of help but still respect my answer".
That is one of the reasons i love my battery one.
If left to my hubby I would spend all my time on markets sitting looking at tools and fishing tackle instead of `interesting things
Unfortunately i live alone and am struggling with a bigger car so i doubt i could manage a WAV 
hi Grannie crochet, I first posted this 2 years ago and still find it true for me. I also often book one for when I'm away.
My Scooter
I've started using my own scooter while out. I've decided that it's a positive step as -
I can be out for a bit longer;
I can get further;
the pain is less;
more quality time with friends as I'm not struggling to breathe/move/keep up;
I get to be out where life is going on;
I meet nice people who smile or pass a moment [eg "cold today"] or ask if I can reach;
I'm acknowledged as a person - not invisible, I exist!
I get to be independent.
I know there are negatives but they're the same as everyday when I'm on my crutch [es] so they aren't botherable [ I just made that word up! ]
try the scooters out in supermarkets first. I hope this might help someone.
regards,
hamble 
Thanks sound like a good way of looking at your condition.
But when do you admit that you have the need for a scooter or wheelchair, I'm a bit stubborn.
Me too. I recently invested in a walking stick - I still have my L plates on that as I'm totally unco-ordinated when I try to walk with it but thankfully I don't need it all the time...yet. The day I got the stick, I had a good cry because I felt like I was giving in.
I know when i am tired, I keep tripping myself up with my stick.
That's why I don't get one I am sure I'd fall over it and break something.
I have to take the risk or id have problems from the car to the door after doing the shopping.
I do all shopping online, and it is delivered while my carer is here. If they can't deliver when she is here, I ask them on arrival to put anything needing refrigeration or freezer in there.
They always do this, although usually not in an orderly way. But it is possible to organize a little at a time, or wait until she comes again to organize it. I would not manage without this, and I find that in most cases it works well.
If they are out of something, i can tell them whether to substitute and what to substitute with. if I don't like their substitute, or if anything is short dated and I cannot use in time, i can send it back for refund. I can buy filtered milk which tastes close to the usual, and has at least a 2-week date range.
I have been managing like this quite well for the last 4 years.
competition for customers has meant that delivery charges and minimum amount of order has gone way down, you can buy a reduced price delivery package if you will be using the service from the same grocery regularly or semi-regularly. I alternate between two of the major supermarkets, one with pre-paid, and the other less frequently for which I pay the regular price.
You get a one hour slot pre-booked by yourself for the time you want. If you order a few days in advance, you will be assured of any time of your choice. Some websites are nicer and easier to use without hassle of lots of adverts and random products thrown into your field of search. You can maintain lists or regular shopping items as a standard order to which you add each week... there are very flexible ways to use the websites and keep your info there for future use.
It has the other advantage that you can order anytime of day or night, and even do it in small stages, should you need rest, or need to think about something or check what you have in the fridge. For me it is easier to check prices and similar items from a website than in a store, picking up things and reading labels, which would be very tiring.
I often reserve my delivery slot, then make a basic order of the minimum amount and check out. The following day or days I go back and add things I have decided I want to have or have forgotten. This can be done easily, so that by the day of delivery, it is all ready to go. They usually have a cutoff of 11 pm or so the night before, at which time no more changes to it can be made.
If I ever manage to be well enough to go out in a wheelchair with my carer, i'd like it to be for something more fun than shopping.
I am so glad that on line shopping works for you. I like Aldi for the lower prices and their washing powder shampoo ect doesnt make me come out in a rash.
But they dont deliver and i also like to choose my own meat products. when meat is on special offer i can look for a joint that can be cut into smaller joints and often have some left over for stews and casseroles. The cost usually works out at £3 -3.50 for a joint big enough to feed 3.
As i cut every bit of fat of i think that if i did not choose it most of it would end up in the bin.
Same goes for fresh veg.
Fussy bu***r aint i? 
sue x
Trade offs we all have to decide on. Don't need to defend either choice.
You are so lucky to still be able to cook! How I wish I could, but orthostatic intolerance is such that I couldn't even sit in a wheelchair long enough to go to the store.
I mostly depend on frozen meals delivered, as I can no longer cook. If I could, I sure would! The frozen meals have additives and too much starch, too few veggies. but they get delivered weekly and I can choose from a large variety.
It's there no matter how horrible I feel. I would love to be able to shop at a cheaper store for some things. I used to save loads by buying things on special and making big batches and freezing myself.
I'm very fussy too. I used to shop at Aldi, and now I have to choose between the two stores that carry most of the items I buy regularly...I stock up when they have specials, so I don't run out and have to pay top prices. For products that they don't carry, I buy from websites and try to get two or three at a time.
it's all easier for me, as I can do it 24 hrs a day and wait till I feel up to looking at it.
I would definetley starve if i had to eat ready meals. the smell makes me heave.
agreed, but no choice. My carer is now fighting with social services for them to pay for 1 or 2 hrs a month to come in and cook fresh vegetable casseroles for me, as the ready meals from Wiltshire Farm Foods or even from Meals on Wheels only provide one of the five a day.
I hate having to defend this to Social Services. I raised my kids on good healthy food, whole grains, and fresh fruit and veg. One of them is now a chef and both can cook well and the other is a vegan. However, they live thousands of miles away.
Being used to high quality and then falling to this level is quite depressing.
As I told my carer yesterday, I'd be willing to eat gruel at this point every day without regard to its taste, if I knew it contained the nutrients my body needs. (sigh)
I sympathise with you my friend I have always loved cooking and used to make fresh bread every day and cook complicated meals. Now the bread is only for an occasionaly treat and meals are much simpler making use of more tinned food, when at one time peas baked beans ect just the basics was all we ever bought now we have a cupboard full.
hugs
i use a wheelchair because i have elhers danlos (dislocating joints) as well as my secondary fibro.
i find my wheelchair invaluable and started going out more including to the swimming pool when i got mine. i find it paces my fatigue and pain. Make sure you get some rotator cuff exercises though as our bodies arent designed for pushing wheelchairs sat in them.
Active user wheelchairs are the best ones, i found the fold in the middle type ones hurt my hips, really badly. i saved up for 6 months by not going out and ive been using mine for about 5 years now.
Hi
you say when do you decide to use a chair.? The answer lies with you. Do you find you are limited in how far you can go before the pain makes you stop - sit - go home. Well a chair/scooter would enable you to go father and achieve more. There is no longer a stigma if you need help ask - plodding on in pain is no fun!
x ginsing
Administrator
Totes agree gins!! I have been using crutches for about 18months now as I feel a little more supported, I have a red and bright blue pair now as I refuse to blend in with the pavement (hospital grey) I bought a wheelchair 3 months ago and don't regret it at all!!! I have pretty bad days where my legs and hips are not doing as they're told...my sister comes for me every Saturday to do our shopping so for me its a means of staying out a bit longer and not suffering! I'm having some of those mini number plates made up to put on the sides...Ninja Nanna "WILL NOT" go unnoticed!... 
.....much love....ninja....xxxx
I am looking for reflective glow in the dark something or other, i wont know what until i see them.
With these i would feel a lot safer at night on camping and caravan sites where there tends to be a shortage of pavements. Suggestions would be great.
Google....Amazon reflective tape! Comes up with loads of different ones to choose from!....♥♥
Thanks, Will do.
I have a power wheel chair and i love the independance it brings. If i had not had my w, chair it would have stopped both me and my family from going out and enjoying
the first holiday that we have had together for years.
The only problem is that the w,chair is heavy and combersum to keep lifting in and out of the car. Hubby has started looking for a van that can be fitted with ramps.
Before you spend money on any thing please follow hambles advice and try out a supermarket scooter, that was how i found out that using a scooter was agony on my back and arms.
At the moment i am stickless, having left in a shop. hubby is fetching it later. Using a stick doesnt bother me, in fact i stuck butterflys all over it.
My motto is that if it helps you to live a fuller life with less pain go for it.
Though secretly i also felt tearful at having to buy a chair, i felt that this was the turning point on accepting that things were not going back to how they were.
That lasted until the first time i used it and could play with my dog for the first time in about 18mnths.
Good luck on what you decide. Oh and it was thanks to my son in law who borrowed his nans wheel chair for me to use on a day out that decided things.
Dont think of it as being a permanent way of getting around, think of it as currently a way of getting to do what you want at this moment in time. As one who took 18 months to get my headaround having a mobility chair and wheelchair, you cant be anymore stubborn than me surely!
Believe me the sense of freedom far out weighs the embarrassment and feeling you are giving in to fibro.anyway its not giving in, its working with.
Have a go let yourself have some fun!
All the best
Kittyx
I have very stubborn about using a chair or scooter. I had to finally admit to myself that I need something to help me get around. So I am now looking for something. I was born with broken hips which damaged my spine. Pain is something that has always been there. Now looking at 50 days away. I had to talk to doctor about getting a chair. That was very hard to do. Thank all of you for your comments. It helped me more than you realize. I now look forward to being able to do things I thought was lost to me. Maybe it's not such a bad thing. I was one of the original test subjects about fibromyalgia before it had a name. I can be at ease now. Chairs are not the end but a new beginning!!!
I also have problems with my feet and can only walk for about 30 minutes (slowly) before my feet burn intensely underneath and are extremely painful. Also my right leg swells and only goes down after a night's sleep. As soon as I get up in the morning it starts to swell up again after about 20-30 minutes. My GP has not related this to my fibromyalgia but i have been told in the past that it is plantar fasciitis.
Mobility scooters grrrrrrrrrrrrr !
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