first time in a wheel chair!!!

[uk2]

Hi everyone,

My best friend took me shopping today and we hired a wheelchair form the county mall, iv never done this before you drive right up into the shops get the wheelchair and go in the back entrance no ticket for parking or anything!!

I know this must seem very boring to some of you but i was so excited as iv not been out in weeks to a bad flare and not been shopping in five months since i got ill as i just cant do it and if i do try it its on crutches which just does not take me far, my friend spoilt me rotten and brought things for the kids too!! (as we are tight for money at the moment).

It was so odd as i used to do that take people in the community round shopping and out and about for walks and it was so odd to be the one being pushed!!  And to see things from a different view was odd too.

We were only out three hours as even sitting tired me and lifting my arms to look at clothes though she did keep passing me things.

I swore at the begining of this i would get into a wheelchair even though i have a very old heavy one given to me but i did and i am pleased i did as it ment i could get out i just wanted to share that with everybody.

Samantha x

[crystaly]

**** to people who are like that with you I dont bother trying toi explain much anymore its a ewaste of time with some people ! My sister in laws always moaning about something so know the feeling what she usually says is but you cope so well it doesnt bother you does it and I just smile and dont reply !! What we say and what we think isnt always what we feel is it. I find one day at a time works for me ! take care sam xx chris uk

[uk2]

Will do hun,

know what you mean about patrinonising made it up to the school run came over on my crutches not been up there really in two weeks had to do the school report thing a mother asked how i was i tried to explain but she said never mind we all have our down days!!!

I listen to there genral moaning about life and i think id do anything to have your life back again!!

I thank god for whatever he gives me that day and i thank him i made it up there for my kids!!

God Bless

[crystaly]

I hope the neuro has some news for you sam xx Glad you found the ot department as well > You havent added to my frustration at all your in the same position so understand what its like . Other people tend to be patrionising sometimes because they dont live our lives so its difficult for them to understand ! Dont you dare apologise  wasnt my intention and I certainly didnt mean you or anyone else on the forum . Diagnosed or not many of us have similar problems xx take care sam let me know how you get on with adaptations team there generally really helpful xx chris

[uk2]

Yes still under neuro got to go up to st georges in London for LP,EMG,NCS on the 24th of oct and a repeat MRI on the 25th of nov at my local hospital.

I was looking at my council and found the OT and assement team so might call them, for walking aids and a wheelchair its the GP who needs to do me a referal so ill ask her when she is back from her holiday.

Thanks and yes i know how frustrating it feels too when you have no dx, iv asked for a blue badge form too. I get that everytime i go up the school or when someone phones up you have to keep explaining.

And im sorry i asked just to add to your frustration. xxx

[crystaly]

God I can't answer the first one really My dx if you can call it one is as follows neurological disorder of unknown eittology . Ive had symptoms for 3 + years prior to that really healthy 47 yr old really active. You do not need adx to claim dla by the way its how your symptoms affect your daily life not what your dx is ! I really do understand I get so sick of people saying ooh have you got ms because thats the usuall question I get and me saying no! Ive got ablue badge but cant drive anymore anyway because of foot spasms , action myoclonus The trouble i find in the uk is your left high and dry if you dont fit into a specific clinical box . My neuros last letter said I had significant problesm but she doesnt know whats causing them or have any treatment options which will make it any better ! Really helps doesnt it ! I think you can self refer for adaptations give them aring Also might be worth giving social services aring and ask for a needs assessment . I forget whos who and what symptoms as well because the forums so busy . Are you still under a neuro ? xxchris

[uk2]

Thanks for the info hun.  Can i ask what DX you have?  And how long you have been ill?

I get lost with everybodies stories on here and you being another UK person i just wanted to know how long from DX to getting all these things this took? I cant seem to get noway as i have no dx im trying to fight my debt (more letters today)  get a blue badge and some more help in the house and walking aids but without a dx its a battle!!  When my doctor is about ill go to her and get a referal for a OT i think to come and help sort some things.

Samantha xxx

[crystaly]

Hi sam sorry your not feeling good at the moment its hard sometimes i know . Redcross do have wheelchairs usually avoluntary donation of some sorts I think. Regarding ot services and yes i am in the uk by the way ! Your local council deals with home adaptations . Ring them up and ask to speak to the home adaptations team . An oc will then come out and assess yur needs in your home. Ive got grab rails bathroom, grabrails at door inside and out raised toilet seat, swivel bather for shower and a wheelchair ramp ! Th ereason I suggested a self propelling one is because it gives you the option to propel if you can alittle and also be pushed when you can't . For example Ive got a torn rotater cuff and carpal tunnel or so they think at the moment but hate being pushed about all the time makes me feel like abag of spuds lol I know what you mean about muscles as well I cant stand for more than three minutes without falling over Real pain soometimes. Hope you manage to get transport for the children sorted out cant be easy for any of you with small children xx chris

[uk2]

Thank you. iv been onto to british redcross as i think you can get one from there, my GP is away for two weeks at the moment but i think i will get her to write me a referal as the one my friend gave me is so old, and i could do with a OT to see what else they could do for me at home. Im not feeling great again and i find it so hard to cope with the children at home i really pray they can get them on free school transport soon as the driving is awfull sometimes im worn out already this week and iv only been doing the school runs for a week since my flare. The self propelling would be good but it would kill my arms!! just going out the other day for that trip i could not move my arms afterwards and that was only because i was reaching for clothes and holding bags on my lap!! im not sure whats up with my muscles but daily activites just like standing seem to make my muscle the same or next day feel like iv pulled them all. your uk based are you not? x

[crystaly]

Hi you can get an nhs wheelchair off wheelchair services either self propelling or attendant ones ! You need areferral from your consultant or your gp . They send ot to wheelchair services and they then call you up so you can go and get measured for one . Bear in mind you can get aself propelling one which allows you some independance xxx chris

[uk2]

Hi Hun,

I was having a nap but the phone went!! so i had to get it as was waiting on a call i had just gotten to sleep as well can barley keep my eyes open and i have to collect kids again soon, i will be so pleased if they get them on school transport please pray for that i dont know how im going to get my worn out body up there but i will and use my crutches to go the small way to the school office!!
At least its a light snack i have to do for them as they on school dinners now.

I just dont get how going out shopping in a wheelchair has made me so bad but i have to be thankfull its just muscle pain and fatiuge and not that awfull nerve pain so i should not moan!!

I too feel close to you maybe it is because are sx are so simular or that you have such a warm heart for everybody, and i too feel god pulled us here to this site to bring us through things, i have been able to share my faith, my low points and tell people things that my friends just would not understand!!  I told one friend of my exciting day out in my wheelchair and she was horrified!! Funny we live in such a different world from them now!!   I was so active and had so many plans, but thats ok cause i will make new plans and i will not miss out on life never mind how painfull times are, i am happy i have you and others on here to talk to and always so touched by the replys i get.

The depression still lives in the background and as my day out memory fades im hoping it will not come upon me again nor that pain. Iv stayed off the anti-depressant (im a stubborn cow) and im slowley coming off the diazapam though at 6mg it really helps and i dont feel my mood is too bad but the doctor says its additive and it can make depression worse so ill be off that soon and on sleeping tablets at night.

Its my test day soon at the hospital 24th of october and then my depression will come back as i have a intence fear of the LP but im not going to think about it iv arranged for the kids to be away for those days and im hoping it will be a breeze and praying lots.

Its great you did the mowing and weeding sometimes you do have to do whats best mentally and suffer phyically as i think the mental buzz of just being able to got out and do something different really lifts you and helps cope with the after pain anyway!!

Lots of love and hugs hun xxx

[doni54]

Yea, I know sometimes we pay for it when we exert ourselves.  I cut that grass Monday and then decided to start work in one of my overgrown flower beds.  Well, needless to say I got too warm.

Yesterday I was exhausted and had wonky legs all day, some pain but not too bad. I could tell that hubby and Cory (son) were watching me closely yesterday.  Cory kept asking if I was okay and I just told him I felt like !?** in my body, but my mine was overjoyed that I had gotten outside and done something that I love.

Worked in another flower bed a little yesterday, Cory helped, wouldn't let me do it by myself. Couldn't do much, and just sat around the remainder of the day.

I am sure others on here can identify with us, sometimes you just have to do something to feel that you are still a viable person.  Even knowing we will pay for our decisions later, it still helps us feel better mentally.  

Whatever it is that you and I are suffering with, I believe the dark depression we have both dealt with is probably one of the worse symtoms.  When we get so depressed it is hard to pull ourselves back up.  I don't know about you, but if it weren't for my friends on this board there were times I don't know if I could have pulled myself back up.  I think we were all sent here to this board by God so that we would have the support we all need so desperately.  

I feel so close to you, I guess because we both suffer with so much pain and don't have a dx.  Just know that I am always here for you and I am so glad you have beaten that old depression.

Love & ((((hugs))))

[uk2]

Your so right girl!!

My legs are not too bad but my arms and tummy muscle really hurt its odd and when after three hours of sitting in the chair i was so stiff i could hardly get out but it was the best time iv had in ages.

Iv been searching on ebay for a comfy sit to go in the worn out wheelchair my friend gave me, though heavy and my friend could not push me in it my husband sure could, you get these like cushions with backs and arms and that way he could take me out too!!  but most places rent one anyway and those scooters, i checked with the NHS site and they provide scooters and self operated wheelchairs but you have to be DX or very disabled.

But im happy just to rent one from mall now and it means ill be able to join in the christmas shopping too!!

Iv applied online for a blue badge (disabled parking) but i dont think ill get one without a DX but its worth a try.

Its like saying goodbye to your old life sometimes and just have to take a deep breath and do it or you miss out!!

Im off for a nap my shoulders are killing me just writing this lol  

Take care Hun x

[Heather3418]

I know you aren't real happy about using the wheechair, but try to think of this another way.  Because you sat in a wheelchair while shopping, you were conserving that precious energy and not over tiring yourself.  Hey, your arms were fatigued from all that reaching, but not having to walk for 3 hours, gave you a chance to get out and do something you love.

Wheelchairs may SUCK, but thank God for them...it gave you FREEDOM.  I am so happy to hear that you were able to get out and not worry about everything else that is going on, for a little while.  FREEDOM girlfriend...FREEDOM...that's what a wheelchair represents.  Feel good about it...I would!

Best Wishes, Heather

[uk2]

mokibear

Iv too let pride get in my way for 5 months since iv been ill and not really gone far unless somebody has driven me and i could sit down at the other end. Iv not done the food shopping for ages as i do it online (dont miss that though but recently my husband has been doing it again to save on delivery charge) and would not get in a wheel chair!! but it was the best thing i did!! i got out it lifted my mood and i spent time with my best friend again, who cares who saw me, we even went in anne summers!! ( not that i wanted anything but she did).

LLWB

My auntie has one of those scooters and they had them for hire at the mall but you cant get in the shops with them it was hard enough with the wheelchair are shops over here are just not geared up for the disabled i remeber going shopping in the U.S.A and the shops were full of space between ailes and easy to get around some of our big supermarkets i could get the scooter round but anyway i cant afford one so it doesnt matter but there great for large open areas like theme parks and they fold nicely inside your boot some of them but sadly the NHS do not provide these i have not even got a wheelchair form the NHS but have a really old one a friend gave me but its so heavy and really passed its sell by date lol!  But im going to look into getting one myself a proper wheelchair from the NHS i think you can rent them or there give you one and im going to try for a blue badge (disabled parking) even though i dont have a DX. I wish i had one of those wheelchairs you controled yourself but there very expensive.

zilla

A very good day!!  suffering today though am so stiff i can barly move and got that rib pain again but it all muscle pain and not nerve so i can cope with that and it was worth it!! wore my new PJ's in bed last night (how sad i get excited over PJ's lol) It was my pride that trapped me i just would not use a wheelchair and even on good days(which there have been few) i only went on the school runs and church on sunday on occasion as i could drive there and walk slowly in and sit straight away!!

Roxie

Thanks hun, and it was such a blessing for my friend to buy me and my girls so many things i guess over the years we have helped each other out and thats the way it goes in friendship!!

doni

I feel so happy to of swallowed my pride and got out there even though i cant even move today and fell asleep at half six last night and the school run was a job this morn (husband abit annoyed i pushed myself but happy i was happy) I think just excepting (even though i dont know what this is) that at the moment my life is like this and may stay like this that i need when i can to make it better for myself and im going to get onto trying to get other things to help me around the house too!
Love and hugs x

Jazzy

I wish here in the uk they did that!! but the NHS will only supplie wheelchairs and walking aids the rest you have to buy!! and ill never afford one of those!! Yes the sccoters are perfect for theme parks and next time i go im renting a scooter or wheelchair, this past summer we went to lego land (that was agood week) i managed to limp my way round but was laid up for a week afterwards with pain and the kids missed out on so much too cause i could not walk round and spent most of it just sitting and watching them on rides and never saw the rest of the theme park.She is one in a millon!! she is fine today i thought her arms might hurt pushing me!! but its me who is suffering lol x

Frann

Yes i thank god for all the people and blessing he puts in my life and i thank him for the life i have now dispite the pain and for lifting me out of the dark depression i had slipped into!! and for the nerve pain that has eased, today its just muscle pain i feel like iv done a full work out every muscle hurts so much!!  strange as i was sitting!! must of been all that reaching for cvlothes lol  
There is something about shopping that lifts you or maybe it was just being out and about with my friend im not sure !!

God bless

Thank you all for your replys love you all xxxx

[frann]

I am so glad you were able to get out ...my goodness... 5months without shopping... wow... you must be so happy.... we are ALL so happy for you... thank God for kind, caring and loving friends... you are loved!!!

God bless,
Frann

[Jazzyfizzle]

Hi Samantha,  Its not boring at all! Its great to be able to get out and go, isn't it! I have made up my mind to ask for one the next visit, or at least one of those 'skooters' to see if the insurance will pay for any of it, or if I can find a used one.
My kids want terribly to go to this huge amusement park we have in our area (its called Cedar Point). And I enjoyed it so much as a kid and taking my oldest son, that I now want to take my other sons next summer. Walking it is out of the question, so I am hoping this would enable me to go, and also to get out more for extended length things that I am not attending due to not being able to walk it or stay on my feet.
Thumbs up for you!! Your friend sounds like a good one!!

Hugs!
Jazzy

[doni54]

Hooray!!!! You sound terrific, and I am so glad!  I have worried so about you these past few weeks, but now you sound like a different person.

I am glad you got to get out and enjoy yourself, you deserved it after the past few weeks you have endured.

Keep up the good work and take care of yourself.  I wish we had the little smily faces to put on here, I would use a dozen of them!!!!!

Love & ((((hugs))))

doni

[Roxie0818]

YAH!!!  Glad to hear you were able to get out and get things for the kiddos!!  I understand that is a blessing!!

GREAT TO HEAR

Roxanne

[Momzilla]

You're free!  Good for you!  I'm glad to hear you got out and about.  I had no idea you had been trapped for so long.

Happy day!

Zilla*

[LLWB]

Will the NHS provide one of the mobility scooters for you? The look like a chair, are battery charged, and can be operated with one finger. They have very short turning radius. I know in US that SS will provide them if qualified, at no cost to the pt. That way don,t have to have anyone to push, and don't have to use your arms. Google mobility scooters. A lot of the companys will help with all of the paper work. This would allow you to get out and around yourself. Friends are our greatest asset, but sometimes it's nice to be independant when we can. Good luck, and congratulations! Keep up the good work.

[mokibear]

Kudos to you!! I'm so glad you were able to get out. I know myself there are days where walking seems almost impossible so I don't go as pride stands in my way. I don't think it's boring at all!! I'm so glad your excited. You needed your spirits lifted and this obviously was the ticket. You deserved to be spoiled rotten! Enjoy!

Moki