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SpringOwl

Member
Joined
Mar 3, 2010
Messages
20
Reason
Learn about ALS
Country
US
State
MI
I have no diagnosis yet. I can no longer use my left leg. I just drag it along. Now I am barely able to use my left hand and arm. My legs and feet are painful all the time but my arm is not. My arm and hand are just weak from the spasticity they have little pain.

I have lots of spasticity in both my legs and they hurt badly all day. I am taking low doses of Baclofen but it makes me so tired - I try to take it after I get home from work.

I have been faking it at work for so long am I am ready to crack. I have gone over the family budget so may times it is futile. My family needs the money. I did look on-line at disability and it said if i am working now and making more than $1,000.00 per month, I do not qualify for SS benifits. I do make more than $1000.00 per month right now.

Besides the pain, the fatigue at work is getting to be too much. I am tired all day but at night I only sleep for about four hours. Sometimes when I am desperate, I take an Ambien. I have no energy and I am really scared.

Yesterday I went to the restroom here at work twice and laid on the floor just to rest.

I am rambling here but my thoughts these days are not to organized.

My doctor is sending me to see a University of Michigan doctor but he said they (U of M) will contact me and it could take a long time to see the specialist. All the "good" diagnosis' have been ruled out. (lyme, vitamin, pinched nerve, ms). My emg was normal which in my mind helps a bit. My body still does not work well. I am not in a wheelchair but some days I wish I had one. I can only walk very short distances.

I have a desk job as a medical biller. I data input claims all day and having a hard time typing. It is just a small mom & pop company and so far I have been able to do the bare minimum but I am really having a hard time. Because this is a small company, there is no disability by law. My hand cramps up when I type and because of the hyperreflexia I have, it is hard to sit still in my chair. My legs are jumpy. I am just taking one day at a time but I am truly miserable every minute.

Just some stories of your personal experience or advice would be helpful.

I am here today at work but I am so anxious all the time. I am anxious about my condition of course but also about my job and how long I can keep this up. I have two children (ages 9 & 10) who need me too. I would like to give the little energy I have to them.
 

Tokahfang

Senior member
Joined
Jan 31, 2010
Messages
773
Diagnosis
07/2009
Country
US
State
VA
Your situation sounds very tough. You talked about wanting a wheelchair, what is stopping you? For me, life was similarly in the pits until I bought my first hospital style wheelchair for under $200. Just owning one doesn't force you to use it when you don't want to. I didn't use mine at home at first, but it gave me back trips to the library, church, and work that didn't turn into a miasma of pain. From your description, you would do best with a powerchair, but if you don't have the best insurance coverage there are manual wheelchairs that have both handrims on your good side or are close to the ground so you can push along with your legs. If you are uninsured, I have an extra I would be happy to mod for you and send your way.

Beyond the wheelchair, though, as the disability grows, there really is a point where work can be counterproductive. When you have the best assistive tech available to you and work still destroys your ability to care for yourself and function in your family, then it is probably time to explore your options. Without more details, I am unsure exactly what they are, but I want to encourage you that it isn't shameful or anything like that. Explore SSI, welfare, state vocational programs, you name it. Even better, if you have someone you can trust, delegate it! I know from experience being in so much pain you can't sleep, you can't function makes it ridiculously hard to navigate the safety net system, having a helper is important.

I have shared a lot of your experiences, but I wasn't supporting a family at the time. That must make it so much harder, my heart goes out to you. For me, the lack of sleep, constant pain, desperation at how to survive, and lack of a diagnosis that could get me help or accomodation drove me to the edge of suicide. I literally packed the pills, looking for a time. It took the relentless love of my family and God to draw me back from that edge. Things have improved since then. I got my first wheelchair and it multiplied the possibilities of life. It cut out a lot of my pain, brought it down to a dull roar. It convinced my doctors of the seriousness of my condition. I had to learn to live a whole new way, but it was worth it. I danced the first dance at my wedding in it, learned to hop curbs, and raised an infant niece in it. Then I worked a desk job until I could no longer type. Now I am relearning life in a powerchair, and while it isn't easy, it is worthwhile. There is life ahead, even when it is so dark we cannot see it. Please, take hope from that.
 

Tokahfang

Senior member
Joined
Jan 31, 2010
Messages
773
Diagnosis
07/2009
Country
US
State
VA
YouTube- First Dance

That was my first dance, two years after I got my first wheelchair. The difference being aggressive about assistive devices made in my life still astounds me.
 

SpringOwl

Member
Joined
Mar 3, 2010
Messages
20
Reason
Learn about ALS
Country
US
State
MI
Thank you for replying. If you look at me when I am sitting down, I look ok - just tired.

I don't think anyone knows how much pain i am in or how uncomfortable I am.

I really think I do need someone to "take over". I think I have waited too long to ask for help and now I am screaming for it.

I am so scared. I can't turn my mind off. I try to get distracted or pray but I keep coming back to the same dreadful thoughts of work and money and being a burden to my family......

Thank you for your support and offer for a wheelchair. I don't even have a handicap sticker for my car. My doctor thinks I should walk more. HA. I don't have a diagnosis yet am not sure how to get a wheelchair. Do I need a prescription from a doctor?

I am trying to take things one day at a time and act normal but the pain keeps pulling me back.
 

Tokahfang

Senior member
Joined
Jan 31, 2010
Messages
773
Diagnosis
07/2009
Country
US
State
VA
Buying a wheelchair doesn't require a perscription unless you go through insurance, which for low end wheelchairs often makes them more expensive, ironically. Belleve it or not, I never had a parking pass. Until my powerchair, I left those spots for the ambulatory disabled like yourself. If you google a website called spinlife, they sell equipment at rock bottom prices. (They do deliver slow, but I have had otherwise great service from them.) I will also PM you my phone number, and we can talk about what modification my old chair needs to be good for you. It is a quickie GP, currently set up very sporty, but if you are a similar size to me it is very adjustable, I can engineer it back to newbie friendly. (I am 5‘ 3", was 180 pounds when it was fit to me. I can't make it much smaller, but I can make it bigger.) If we are radically different sizes, I will try and help you find something better.

I also found that my pain was regularly discounted. Even doctors didn't take it seriously, but it was ruling my life. It made me feel like I was crazy, exaggerating, or making it up. It wasn't until I had twisted my hip joints from too much use and spasticity that they did care, and by then I had bought my second wheelchair! Sometimes you have to take your own sense more seriously than theirs.
 

Tokahfang

Senior member
Joined
Jan 31, 2010
Messages
773
Diagnosis
07/2009
Country
US
State
VA
I put my phone number in your visitor messages in case you want to call. You aren't alone, many of us have had similar troubles. The rest of my reply needs moderation.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
hi springowl

i am so sorry your having such a bad time with all this.
i dont know much about your benefit system or help available.

my experience is after i first became ill i was so bad i took a several weeks of work(sick and holiday leave)
i went back to my fulltime hours but only lasted a week before i was bedridden with severe fatigue and spasms,ended up on sick leave for several weeks again.
went back parttime to try to ease into things but after 2wks ended with fatigue,footdrop and minimal use in my left side of body.
had some more weeks off went back but after 2wks could not move my legs at all.
went on permanant sick leave then was made redundant.

word of advice.........dont push yourself,you will crash and burn badly.
its a struggle living on benefits,you have to economise.
my son has been out of work for 18mths and its very hard to get a job here so i am keeping him on my benefits.........its tough.

maybe a power wheelchair would help you to remain working for some time,that is if its workable with transport and getting around work.
but honestly you can not keep going as you are doing.
i wish i could help you more:smile:
 

macdonas

Active member
Joined
Dec 1, 2009
Messages
51
Reason
DX UMND/PLS
Diagnosis
09/2008
Country
CA
State
BC
If you are using a sleep aide, regularly to make sure you get a good nights sleep, you could ask for Modafinil. It is a stimulant that helps me stay awake and alert at work with out overstimulating me like Dexadrine (adult ritalin). Make sure you take it with food or it can make you feel naueas. Good luck.
s.
 
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