MOBILITY ISSUE/OVERCOMING TRAVELLING FEAR

[sjc]

Hello folks. Hope u r all having a great time so far. Does anybody struggle with walking? If so, how? Do u need help with getting to places, i.e., a personal assistance, car or scooter? Is your mobility bad some days or all the time? Would u class fibromyalgia a physical/mobility problem? How do u overcome the mobility/travelling problems that fm causes? Sorry to ask so many questions folks. I'm struggling at moment as I have severe fibro, mild agoraphobia. I hate getting on crowded buses or being around unfimiliar places, I have no car and I'm in to much pain to walk most days. I spend most days in the house. I can't even get to my medical appointments sometimes. I've got the worst as i've got older and i'm only in my 20's. I need some advice . Take care folks. Have a good new year.

[cherryblossom]

Hi sjc. I'm not sure I'm much help but I can understand how you feel a bit. When I was younger I was attacked by a madman and a metal bar - wrong place wrong time! But I couldn't leave the house for nearly a year, not even for school. I used to have serious panic attacks if I even went near a car or stepped out the door. Eventually I met my OH who helped me get out and about - he went everywhere with me, he was great. But now I'm much older - we live in a remote village a mile off the main road and at least 3 miles form any other village and shop and 8 miles from nearest town. We're not on a bus route so need to drive. I've been dx since july 2010, but I can't drive far, if at all sometimes, there's nowhere to walk to except the letterbox and the duck pond and I find it very hard to walk to far from home as it's so painful. Our children are grown up now but 2 still live at home. I do get lonely, I hate crowded places as I worry about getting pushed about and the pain it causes. There's no point me having a scooter unless it goes in the car and I have someone to help me and drive me. I don't think any of this is much help to you really is it I hate being somewhere unfamiliar too as I panic I won't remember where I'm going and I worry I'll get lost and when I'm under stress like that I lose my memory too then I panic even more and so on!! So pretty useless really! Anyway, I pop on here quite often and it's really nice to be able to talk to others with the same sort of problems, I hope you find some help too, sorry I'm not much good but I'm sure someone will pop by soon with something helpful! Anyway, take care Cherry

[denys]

Hi sjc yes I have mobility issues and it causes me an awful lot of problems. I'm looking to get a mobility scooter next year and have just got some elbow crutches. The Occupational Therapist has referred me to the wheelchair assessment unit and that should be by February so if I was you I would ask the GP for a referral to the occupational therapists and take things from there.

My mobility issues are all the time though they vary in intensity

[Adele]

hi sjc,

go to the debyshire county council web site and look under "transport for disabled people" and also under "community transport". there is help available here for transport to medical appointments. fibro is definitely classed as a disability.

good luck, adele xx

[efrem]

hi my name is efrem,40yr old and have had fm for nearly 7yrs now.i was about 34 when eventually got dx fibromyalgia.work at time was a labourer,used to do work on smallholding we then lived on and also used to do karate 3-4 times a week aswell.as time went on the karate got less and less and then no more(it was aggravating things),work on smallholding also got less. 1yr later i had to give work up as advised by the specialist i was seeing at time.fm was mainly effecting my legs(joints and muscle/ligaments).as time progressed i had to resort to using crutches to help walk(using them as a weight bearing aid-alievate pressure on joints).we did purchase a mobility scooter to enable me to go around local agricultural shows but it decided to stop working.unfortunately we purchased it 2nd hand and the cost to fix it was silly money.i did find it hard to use the scooter then but only as pride kept trying to over rule things.years on i still think what people think when they see me using crutches as you have no plaster cast on leg.unfortunately fm has increased to my arms and hands now making things abit more challenging,simple thing like typing this is a task,but then you still got to try and live a little.i am sorry if reading this is not looking good but this is only my experience and as i have been reading on this site eveybody is effected differently by fm.take care,look after youself.

[cherryblossom]

Hi. Just a post to efrem, sorry. I noticed in your post you worked on a smallholding and wondered how you felt about not being able to work on it any more if that's not a silly question. I had always worked on farms and now I only seem to do the paperwork, I miss the manual side of things so much it feels like I've lost my best friend! How do you cope? Sorry everyone els, but I do wonder how everyone copes with not doing what they've lived and breathed all their lives? Thankyou All the best Cherry

[whiterabbit2009]

Hi
I started off with an accident at work (26 yrs of age) since then i havegone from a walmking stick to crutches ,scooter and now a powerchair to get around.
i can still walk with aid of crutches around the house but i get tired and well knackard and as i used to fall over (last time carving knife in the hand ) was the final straw and hence powerchair , my home has been adapted with wide doors ramp to front and rear and wet roomand stairlift, there are times that i feel that iam the only one and its sometimes hard to talk to some one who does not understand what pain i have to go through just to live .
My wife is my main career with my daughters who help when not in work and uni , I watch youtube on fibro and also read articles like this one .
I know what you mean when you travel with all sorts of fears that hit you like a bomb shell of "what if's etc " but i find that planning going out makes sure that there should be no surprises (went to london for the first time last september and only problem was the range on my chair ,but easy way was to take charger and when eating in a cafe ask if you can plug in the charger most well be ok ) .

I have motability and my last vehicle was a people carrier wheich had a hoist that lifted my scooter and then wheelchair but now have a WAV and iam waiting for motability to allow me to drive from wheelchair rather than faff about transfering to drivers chair , i know that trains wont allow electric scooters on trains but wheelchairs as they are smaller .

Andrew
ex district advisor in special needs in scouting.

[efrem]

hello cherry,sorry to replie by private message but was unable to find a post which replied to you.we(me and my wife)used to live on a smallholding for 10yrs until landlord wanted to retire.we had pedigree poll dorset horn sheep of which we showed.now we live in a lovely cottage which has a few acres with it.i do not work and was advised to keep up with keeping some sheep as an interest to stop depression.as the years went by things did get harder to do.showing the dorsets has stopped due to the work involved,so itook the decision to sell the bulk of them and start with a flock of grey face dartmoors which are a lot easier to show.my wife(carol) has started her own flock of coloured ryelands of which she shows.most people we meet at the shows come over to help us as they know i struggle.it is hard having to ask people to come and help as i used to be able to do it myself.sometimes i do some of the more difficult tasks but then regret it as the fb tells you off big time.carol does now have to do more of the feeding especialy in the morning.as for getting around i use a quad to check the few sheep which are outside and then hobble around house and garden like some eldely person(sorry to anybody who is elderly).most times i think is it worth all the hassle and pain but when they look at you i say it is.lambing is approaching and not looking forward to it but when you see the little lambs you forget about the bad times.yes i do wish i could do all farming tasks but as time goes by the tasks i can do get less.wish you all the best,ef

[princess]

I was told 10 years ago that i had about 6 months and i would be in a wheelchair.
I was given a stick but i cant work it - what foot with it lol
Anyway i just keep having little walks but what i did was sell my house in the town and moved down to the country, the house is a cottage, its very small so easy to keep.
And my car can sit at the front and back door so no walking.
I only try to walk with the aid of my daughter or hubby as i need an arm to hold.
I am very determined in character and i think thats what keeps me going, so you know you can prove them wrong.
Ill give up if i need too and so far i dont need too.
princess


Sciatica in both legs as my spine is like a snake!!!! - Well i have to be different eh lol

[Angel777]

Hi SJC
Mobility problems yes , in the house a lot yes , buses no , crowded places no , I understand .
These are my ways of coping with all these things , don't know if they will help in any way.
I have divided the house into different areas so i have different places to go , this makes the brain still think it is changing scenes and keeps stimulation going , also I try to bring the outside in, shopping online is still shopping , plants on the windowsill is still gardening , bird feeders in the garden or on the window if you haven't got a garden means you can still watch the birds. You can grow seeds anywhere .pen friends and efriends my social circle.
So I have a tv watching area , an area to read (library) , craft area where I have collected lots of different things to dip into as and when I feel like it , bits of material for collage etc.
Space i have found is very important , I mean spreading things out and the visual of space so keeping things easily tidy , file everything in its place so the least energy is used .
I have a walking stick but even with this on some days I struggle so I walk less by which I mean even just up the road and back is a walk . A walk around the garden is a walk, one step at a time and snails pace does not matter , it is a walk.
I think its thinking enabling and not disabling.
Also ask ask , if you have a doctors appt , ring the doctors explain your mobility and see what they can offer to help, they will have all the contacts to help I am sure. Community cars or maybe local taxis have a special scheme, we have to ask or we don't know what is there to help .
These are some of the things I do and the way I have taught myself to think by researching reading etc .Forget what society expects ie travelling on a bus , just do what is comfortable and right for you , Find another way , there always is one I am finding now .
Angel

[budda]

Good for you Angel thats a great way to do things.

[Ange]

SJC....with your post being done in December, I wonder if you have got a bit like me....re the not going out bit.....

Summer months I potter about in my van, my van has taken over from my legs and walking and I'd be lost without it. But this winter I have been awful....and a lot different to what I'm normally like in the winter.

Winters I just plain don't like for all the usual reasons of the cold affecting me, daren't slip on ice etc.

But this year I have almost turned agraphobic....literally I have become a hermit....getting my shopping delivered and not going further than my back yard. I have been out 4 times since October, and two days of that were Xmas.

I've been so depressed that I could not see the reason for me still being here, could not see any reason for me carrying on, had no reason to get up in a morning, couldn't sleep at night for events of years past being dragged from the depths of my mind to be anylised etc etc.

Then I talked to a cousellor and she said it sounded as though I had SAD.

Well, I hate to say that I didn't believe in Fybro till I got it, and have never believed in SAD....but I can see that it would fit perfectly with how I have been. And now the last couple of days there has been a bit of sun and not dark as soon at night and I feel like I am coming out of a dark tunnel.....smiling at things on TV, planning things etc.

It might be worth you popping to see your GP and telling them how you feel.....
Ang x

[sjc]

hello folks. Thanxs 4 some of your comments and support. Yes, ange. I agree with the winter days making fibro worser. I think that the cold, dark weather doesn't help the pain but I can't stand the horrible weather anyway, especially when i do not have a car to depend on. Luckily, my GP has referred me to occupational therapy in the home as I told him I cannot get to hospital appointments...i am also being referred to exposure therapy/pyscology treatment which will hope my anxiety. Take care.

[Jennypeg]

Hi
Sjc, fellow fibro sufferers Im 25 years old had fibro for 9 years now I can relate to all of you, I suffer with my legs I have a walking stick I take everywhere with me now and a wheelchair because walking gets to much, and I tire easily I wish I could just go for a leisurly walk on my own I can't because I cant push my chair, and I dont think I'd know how to sort myself out if I get to tired, I have a tendancy of my legs giving way also - dr says also got early onset osteo in the knees which don't help, Im doing my physio at home for my legs to hopefully get some strengh in them but something tells me this is going to go on for years... I hate feeling this way, I hate not been able to walk noramally, or riding a bike like most people in this gorgeouse weather, also I hate tailoring my days for the fibro. I know you all feel the same. It just helps to know 'Your not the only one'
*Hugs to you all* [/i]

[sjc]

Hi again....love all of your comment, really sympathize with your all.....I think fibro is a really difficult disorder to deal with, as it can cause not just physical problems but anxiety issues as well.

For example, I know some people with fibromyalgia struggle with even walking down the street to even sitting in a chair - everyday and everything seems to be a hard task, yet people who don't about fibromyalgia will and can't understand how much we suffer.....

I struggle some days but other days I am not to bad - normal healthy people can go and just do things, where fibro sufferers have to constantly think about what they do.

Take care folks.