guilt and accomodations *long*

[KPeveler]

Has anyone ever felt guilty about asking for accomodations? I have a chronic joint/pain problem (probly EDS) and CFS. I can work, but really nothing else. I dont really go out or have friends, i have to spend all my time resting. you would think i would want something to help me. even getting a w/c prescribed (they're expensive! also i dont have much strength, so i need a lightweight one fitted to me). i know that a w/c can help me (crutches/cane usually end up hurting me more), but yet i wont ask for one. i feel guilty about wanting one.

yes my legs function, if not really well or normally. my joints tend to give out, then i fall down. obviously i cannot walk around disney, but nor can i walk around the mall. i feel bad, and i worry about what other people will think (my mother doesnt think anything is wrong, btw)... but i want to be able to live a normal life. i am 22 and almost a hermit.

has anyone else felt guilty about wanting some kind of aid in their daily life? i think a w/c would help me get around better, but i feel like a dr will think i am just looking for attention or a "cool toy" if i ask for one...

 

[nobodies36]

Short answer is no. I have had M.E. for over 10 years now (in the States they tend to call it CFIDS, but my belief if that it is slightly different). Anyway, like you I do not go out and friends gave up on me years ago. However, due to any circadian sleep cycle (it is 4.35am where I am) I cannot work, yet if it wan't for that part of my illness I probably could as I managed to get an MA after my name. I understand how you feel.

When I was diagnosed, I was told that I would be in a wheelchair within a couple of years and I refused to accept that. I do not have a wheelchair. I accept the disabled parking badge, but my illness will not stop me driving (even if I don't go very far). That is how I feel about my illness, but if you think you need a w/c then get one. In Scotland, our malls and supermarkets have wheelchairs and ECVs to borrow, but I do still try to resist and just lean on a trolley (cart) for as long as I can. A wheelchair would help me quite a bit, but with it I would lose my fight with this illness; the fight with my body that doesn't act like my body.

To anyone looking, my legs function. What they don't see is the way that you learn to smile through the pain just to stay that little bit more independent. They don't see when my legs give out and I fall down the stairs or the amount of rest it takes to recover from a small walk. I am in constant pain, but I won't let it stop me trying. I do get a w/c for long days in Disney (hence our 4 week holidays), but I also just do what I can and then leave. No-one else can feel what you feel so I can't even say if a w/c is right for you- only you can answer that bit. Never put yourself in pain/danger because what other people think. I do it to keep my sanity, and not for a single person other than myself. I listen to people on the board talking about fakers, and to look at most would think I was, but they cannot feel the pain, the fog, the exhaustion...the list goes on. In fact, most people still think of 'yuppie flu' and think that M.E. is about being really tired. It is like saying someone with alzheimer's is just really forgetful. My preference for an alternate (and accurate) name for M.E./CFS is 'Living Death Syndrome'.

I understand about the normal life statement. You will have to make changes in your life to get this (I'm still working on it) to get that and if a w/c gives you that then DO NOT let any other person have any influence on trying to achieve a 'normal life'. It is your life! They are the same people that couldn't take the time to understand your illness and remain your friend so they have absolutely no right to try to influence your decision. Your mother does have some say, as she loves you, wants the best for you, and is your only true friend in the world.

I am almost 25, have been ill for nearly 11 years and am closer to a hermit than you can imagine. I will not feel guilty for trying to make my life better. If a w/c is right for you, ignore everyone else. (And this will go down like a lead balloon here, but I don't care). I really should be in a w/c, but I fight. I have to give in at Disney or I couldn't go. But in saying that, so what if people think I want a w/c as a 'cool toy'? It is rather a novelty for me because when Disney is over, I have to leave my 'toy' and keep fighting for the rest of the year (and my life).

What I am trying to say is: If it makes your life better, get it. But, try only to let it be a physical 'crutch' and not a mental crutch. Use it when you need it and be grateful for the pain you feel in your legs sometimes (because you can still at least feel them). Don't let anyone keep you out of w.c if you need it, but don't let other people's opinions keep you in it either (like if you feel people will look at you funny because today you need it and tomorrow you don't or you need it to get around the mall but want to walk to the bathroom yourself while your mother gets the lunch). You know your body and it's limitations. A Dr. who thinks that should go back to medical school- provide him with some information and education about your disabilities as you know more than him.

I hope that makes sense and doesn't seem like I am telling you what to do. If anything I hope you know that I can relate to a lot of things you have said, and that I truly feel for your situation. Reach for that 'normal life' and grab it with both hands!

Lisa
xXx

 

[KPeveler]

forgive me for disagreeing with you somewhat. i am not saying this to insult you, nor are you wrong. disability is a very personal thing. but let me say a couple things that confused me about what you said.

i also suffer from CFIDS, though not as severely as you it seems. I do not let me disease "own" me, but I learn to live with it. to me, it would be more "giving in" to the disease to be stuck at home or even in bed all the time, rather than using an assistive device that was made available to live my life as normally as possible. yes people would think things about me, but i would simply content myself knowing i am smarter than they are (at least about my own disease).

to me, fighting is using the resources available to live life, not refusing assistance to remain "my own person." please do not take offense. as i said, i am simply curious about other peoples' viewpoints. but i would think it would be similar to refusing chemo because that would be "giving in" to cancer. to me, refusing treatment is not standing up to it, but simply denying it. i would rather use assistance and be able to have friends and a job and (god-willing) a family some day.

i am interested in other people's viewpoints. please no one take offense to what i said. as i said, disability (or different abilities, or special needs, or etc) is a very personal thing, so it depends on how you personally deal with your disease or disability.

 

[nobodies36]

You don't need to apologise for your opinions. Yes, it is personal, which is why I never said what the right thing for you to do was other than do what you wanted.

My diagnosis is not CFIDS but M.E. and theoretically may not even be the same condition, just similar symptoms. Therefore, severity doesn't come into it as both conditions are syndromes and therefore cannot be compared by severity alone, perhaps serverity of symtoms, but people can cope with differents amount of pain/various other problems.

I never said that you let the disease "own" you, nor did I say that by getting a w/c you would be "giving in". I think you are missing the point I tried to make. An assistive device is a physical crutch, but can easily develop into a mental crutch (and I said that because of the reserch I have done into the differing symptoms of both M.E. and CFIDS and I speak specifically about the mental health issues that come as subsidiary illnesses). I told you a little of how I fight, but my symptoms are different from you so why would you assume that you should fight the same? I actually said "f it makes your life better, get it". The point was I do what makes me (at least try) to achieve a normal life and you must (for yourself) do what you need to do for that. No offense, but did you even read what I wrote?

That is the most rediculous thing I have ever heard- me refusing a w/c is not comparable to someone refusing chemo. I also never said 'refusing assistance [wouldn't allow you] to remain "[your] own person." '. Refusing treatment is not you giving in (and no-where did I say that), what I said was "se it when you need it". There are people out there in wheelchairs that would love to have the strength to walk their daughter down the aisle and such like, the point that you were in a better situation than most. Right now you can still use your legs (even if a little), but constant wheelchair use will lead to more muscle wastage and after years you may never have the strength to stand up (I didn't say that in my last post as I couldn't figure out how to put it more eloquently than an offence).

Yes but what you don't know is that I have tried every medication under the sun to FIGHT to fix my reversed and chaotic diurnal sleep rhythms. For me, having a job would be part of my 'normal life'. You assume that I don't want a job, friends and a family. That is why I fight; everyday I fight. I said get the w/c, but do not let the w/c stop you from fighting for what you want, and for me, that is the symptom that I find hardest to cope with. I do not assume that yours is the same.

You asked a question, I gave an answer. I said no, you shouldn't feel guilty about asking for help. But nearly 11 years of research and I just wanted you to be aware of how a physical 'crutch' has easily developed into a mental crutch for so many people with M.E. and CFIDS, and has lead to even more muscle wastage and poorer health. I want you to have your 'normal life', I really do, and I say these things in love. An alcoholic doesn't know he will become an alcoholic when he takes his first drink, and likewise by getting a wheelchair now it isn't a mental crutch, but could be in 10 years time when you forget what it was like when you didn't have one, and you had to make yourself walk (through the pain and the falling and for short times) and now (10 years on) you can't remember: that pain that told you that you had taken enough steps and needed to rest; the goalposts shift and you can now only take half the steps you used to because the pain comes quicker and you don't remember that the pain you feel now, is the pain you would push through just to keep the ability to walk sometimes. And now that the w/c has helped you get out and meet someone, you haven't the strength to walk down the aisle.

You shouln't have to choose- you can have both. Just always keep that at the back of your mind. Or don't and spend the rest of your life in a chair. I was just trying to give you some advice so that you knew you could have both. Another tip I will give is read my first post again and maybe you will see that I am not saying what you have read into it, that is the only thing that offended me- you didn't take the time to read it properly and understand it before posting again. It is your perogative, and I agree with almost (see chemo thing) all of what you say, the sad thing is I said it all in the first post already and have to say it again. I understand the defensiveness though (I guess I shouldn't have studied Psychology..lol). But I do hope that you can see that now. Wish you the best in whatever you decide, and however it all goes).

Lisa
xXx


None of this is meant to offend anyone (especially w/c users).

 

[KPeveler]

"A wheelchair would help me quite a bit, but with it I would lose my fight with
this illness"

This is what I was referring to in some of my post. To me it sounded like it would help you, but that would be "giving in." now do you see where my confusion came from????

and the "did you ever read what I wrote" part was a little snippy. i did read it. twice.

and, just as a point of interest, you are the first person i have talked to that considers ME and CFS/CFIDS different diseases. most people consider them the same thing, which is why i was suggesting perhaps we could relate a little.

 

[nobodies36]

A w/c would. But in doing that I would gain a little and lose a lot. So to me, as a trade off, it wouldn't be ideal. My fight is for things like a job. I would have less pain in a w/c, but being in a w/c would limit me further than I am now with the circadian sleep cycle. Trying to get to work on time with my cycle is virtually impossible. Trying to get there on time getting in and out and no one to push me because of my arm muscle wastage would mean I would need a job to make my wages and cover my mum's wages (so that she could push me about to get there). Make sense? It is just that- my fight. Yours will be different. The point is that we fight and don't lie down to the illness (and fight in ways we need to for ourselves). And for me, I fought to keep on my feet so that I could walk (even if I couldn't wear heels like everyone else) to hold my head up high, pick up my degree, and show everyone who said I would never do it just how wrong they were.

It was a little snippy, but it was the comment about chemo that got to me. I know someone in church who has cancer all over her body and has refused chemo and now cannot be treated. God will heal her and she did what she felt was/is right. She feels by refusing treatment she was fighting the devil so that God would heal her. I felt as though you judged without thinking about someone in that situation, and I just happened to know someone in that situation. It is a sore point and I did (as I said) mean no-one any offence.

We can relate because we share similar symptoms to similar degrees for most of the illness, but we will also differ. My studies started back before the WHO classed M.E./ CFIDS/CFS as neurological (when I noticed my neurological symptoms and no-one believed that it was neurological). I looked at data of who had what symptoms and how bad, etc. I did find that there were a few discrepencies, for example, if it is neurological, why do some people get better after months, some years and some never? And why do some people show neurological signs and some actually don't (going from the diagnistic criteria from different countries)? Why some have many different symptoms, others seem to follow a pattern, and some are basic diagnostic criteria? There were so many differences but there seemed to be two distinct groups (although difficulty was that some symptoms don't present themselves until years into the illness(s)). Those with more and/or severe neurological (and cardiological as well as some others) seemed to be less likely to recover or took longer. Co-morbidity was also an issue.

From what I have learned, there does seem to be a pattern that leads to the conclusion that it is two (or possibly more) disabilities. They are changing the name to end in '-encephalopathy' to be more accurate. (Hence I prefer the term M.E. as it is accurate to the fact that it is neurological and also I believe it to be different). It is truly fascinating, and I hold onto the hope that if it is found that more than one condition has been lumped together, then there is more chance of more research (and possibly a cure in the long term). It is why I believe that my fight is different from yours and we differ in what we need to make our lives better.

 

[OneLittleSpark]

Hello, I just wanted to provide another view point on the matter. I've got multiple joint problems (still waiting on a diagnosis) affecting ankle and wrists, which means I can't use crutches. I struggled through for a while, pushing to get to and from lectures, but was hardly able to concentrate when there, and had to sit for many hours to recover. I also gave up going out with friends and to societies, and when I did leave the house was so slow that I was a nuisance to everyone with me.
Anyway, I talked to my doctor and she rang up the Red Cross for me, so I could rent a chair from them. It changed my life! I was able to go dancing, go to the pub, meet friends, even go for a 'walk' just for the sake of it (something I wouldn't have dreamt of before). I've now got my own chair which I use as much as I need. I still walk around the house (with a stick when necessary), and on a good day can walk a bit out and about leaning on the chair. I've just come back from a big folk festival in Edinburgh. I had a great time, danced into the night (on wheels), and even explored the city a bit. This, for me, is a HUGE thing.

That's just my experience, and I know it won't be the same for everyone and that my condition is different for yours. I just wanted you to know that, for me at least, a wheelchair has been liberating, rather than debilitating. I only wish I'd got one sooner, rather than spending all that time depressed and hurting when I didn't have to.

Anyhoo, do what you need to, and don't feel bad about asking for help; you're not looking for an advantage, just an even footing. Good luck!

 

[KPeveler]

i did not mean for this to become a debate of who-hurts-more-than-whom. i realized last night why i want a wheelchair. a wheelchair makes me "normal." which i know sounds weird, but its true. i could live without fear. no more fear of hurt myself just cause i wanted to go to the mall. no more being stuck in my house. i feel bad for wanting a wheelchair, so i never asked for one. but maybe now i should...

 

[OneLittleSpark]

It doesn't sound weird at all, I understand. If you feel it would improve your quality of life, which you seem to, then don't feel guilty about it. There's nothing wrong with asking for help. Talk to your doctor, and if they're not helpful, talk to another doctor. Get the help you need to live the life you want!

 

[KPeveler]

it just occurred to me as i was sitting here if i had a wheelchair i could go to the boosktore and mall tonight like i want. instead i will go home and rest. that is just a little depressing. i wont use it all the time, but for times like tonight it sure would come in handy.

 

[OneLittleSpark]

You sound like you may have already convinced yourself. If it will help you as much as it seems it will, and you feel it's the way you want to go, you go for it. I wish you all the luck in the world!

 

[Dis1978]

I had to fight to get my young son a wheelchair. He had severe M.E./ cfs but the doctor was so against him having a chair. So I was stuck in my house with a child who couldn't even walk to the car and a toddler too. You can imagine the fun I had trying to get out to do the slightest thing. The doctor felt that giving him a chair would "label" him! They wouldn't even let me have crutches for him - I had to go out and buy them for him against the doctor's advise.
Anyway, I got him the crutches so that he didn't have to go around the house on his knees and I got told off by the doctor too. Then I got him a wheelchair from a local charity. Our lives were transformed. We went to disney and had a wonderful time. Everyone was so good to us.
So my advice would be go for the wheelchair and enjoy all the freedom it brings.
Also as a note of hope for the future - my son is now better after doing a treatment called Lightning Process. I mean completely better and back at school. I find it hard to believe but we are now 10 months after LP and thank goodness he is fully recovered. I admit that I do worry every time he even has a sore throat or an ache or pain but he has learnt how to deal with the illness now and each time he gets a virus or illness he knows what to do

 

[Linda Bell]

Has anyone ever felt guilty about asking for accomodations? i am 22 and almost a hermit.

has anyone else felt guilty about wanting some kind of aid in their daily life? i think a w/c would help me get around better, but i feel like a dr will think i am just looking for attention or a "cool toy" if i ask for one...

You should feel no guilt for wanting to live a rich full life at 22. Good grief just stop that right now, you hear me?

Go for it if it brings you friendship and painfree travels. More power to you.

A wheelchair is merely support equipment. It can empower, enable and liberate. It did for my daughter. She has muscular dystrophy and we went through the leg braces, crutches, canes and walker with seat attached until the pain and the falls made it imposible for her to go anywhere.

We then went for the "cool toy". We got a candy apple red scooter that has a horn, headlight and a seat that lifts her to a standing position. Life has not been the same since.

Join some of the online chat or newsgroups dedicated to those with wheels. They are great for emotional support. They can also help when it comes to how to word the insurance requests. (It is all in how it is worded, honest.)

A brief word about us moms. Our kids are "perfect". Use positives only when talking to her. Spread the happiness where you find it. In the end we just want our kids to be happy.

Enjoy life!

Linda Bell





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[thop529]

I know where you are coming from. I lived like that for over 10 years. I have Limb-Girdle Muscular Dystrophy.

I sat in a chair, would not use any equipment. Didn't go to the mall, out to a movie, out to dinner.

Then one fatefull day in 2004 I was coming in my home and fell. Spiral fractured my femur. Was non weight baring for 4 months. That did my walking in 100%. I had to get an electric wheelchair. It changed my life! You can't keep me down now. I go everywhere, do everything.

Me, my wife, my son and Big Blue(my wheelchairs name) hop a plane in a minute and fly to WDW. Yeah, there have been mishaps, but if I knew then what I know now. I would have done it much sooner.

That wheelchair is a part of you, but it doesn't define who you are. Enjoy your life. Get you a chair, stop feeling guilty and enjoy your life!!!!!!!!!

 

[Belle1997]

I know how you feel. A chronic illness takes so much out of you. I spend my day just making it through the day. Conserving all my engery to make sure I can continue to work. By the weekend I am so exhausted I spend it recouperating so I can face another week. My social life is nil have no energy. I use a cane but should use a walker to conserve more engery and a scooter. But my pride gets in the way. I do not like my cane but feel it is needed. Maybe if I used my adaptive equipment more often I would not have so much fatigue. I am being treated for MS though I have not met the full criteria. I am in the 5% that do not show lesions. But each day is a struggle. So I do understand.

 

[KPeveler]

I got a diagnosis! So maybe we can work on fixing things so I can get around again!

 

[OneLittleSpark]

YAY!!!!

I'm so happy for you ! I'm still waiting on a diagnosis, so I know how relieved you must feel to finally have a name for what your body's going through. I wish you all the best in finding a treatment (and hopefully a cure), and thank you for sharing your good news with us ! Ask for whatever help you need, take any assistance you require, hold your head up high when you walk / wheel about and do whatever you gotta do to live the life you want !

 

[disneySD]

hmmm, you didnt say what you got a diagnosis of, i only skimmed the post i must have missed it. you did mention probably EDS though. I have EDS, two types as on parent gave me VEDS and the other gave me CEDS. If you do happen to have EDS a manul will completely ruin you wrists in a few weeks. Make sure to get a scooter or a powerchair, or you'll blow out your wrists. I'm in my early 20's and blew out both wrists in less than two weeks of using a 12lb tilite. Not worth it, get power!

good luck

 

[KPeveler]

i have never had problems with my wrists thankfully, and my EDS is not very severe. in fact i have never dislocated anything! i just pull everything which causes pain...

 

[kandeebunny]

Another 20-something with EDS here. I refuse to get a wheelchair of any kind, I do dislocate everything regularly. I had to take my classes online to finish college. I have friends, but only go out when I have the energy. Because of my stubborness with the wheelchair issue my legs are going completely. I was told I would be in one by the time I was 30...guaranteed, so I do what I can while I can, if I'm going to lose the mobility anyways I may as well do what I can and enjoy it while I have it. That said I may be causing it to progress more quickly, but I am having fun.

(My kneecaps are going to one side and one of my leg bones is going to the other...not very pretty.)

My EDS is paired with JRA, CFS and a couple other things that make it difficult. Be careful of your meds, and be very aware of what you take and how you feel after. The meds they gave me caused more problems than they are worth. I am now on NO pain meds at all. Also if you have any questions feel free to PM me, I did a LOT of my own research after diagnosis.

Curiosity though, how do you react to local anastesia?