I’m not the type to complain much about my disability. I rarely feel sorry for myself for being in a wheelchair. It’s pretty much natural to me. I’ve accepted that and there is nothing that is going to change it until a cure for Spinal Muscular Atrophy is found. I have the motto, why worry.
I know many people get depressed about being in a wheelchair, but I’m not one of them. I mean, sure it sucks, but its like my late father, David Lawniczak used to say. There is no use in crying over spilt milk. I guess I can see how being in a wheelchair can be depressive to some people and frustrating when you want to move, but can’t do it without help. Still this is one of the few things I’ve actually accepted about my life. So, it’s one of the few things I don’t complain about.
What I do complain about is pain. I hate pain. I am pretty sure most people with SMA experience pain a lot different than the average person. I can just bump into something and have it feel like I’m being stabbed. I admit it. I’m a baby about it. Well, pain is why I’m writing this blog. If there is just ONE thing that I could mention that sucks about being in a wheelchair it is experiencing pain.
I’m on a regular regime of pain medication. Tylenol 4 with codeine is my friend. It takes away the pain in my back and my legs most of the time, but rarely touches pain in my hip. If I could trade being in a wheelchair forever for not having pain ever, I’d stay in the wheelchair. It’s not so bad if there is no pain, but when it hurts I just want to cry.
Do you know that the only time I cry is when I’m in pain? It’s true. I’m not the emotional type, but slam my foot into a wall and I’ll cry like a baby. I’m so sick of pain I’m considering utilizing the new law for medicinal marijuana in my state.
Marijuana isn’t physically addictive. I don’t have an addictive personality so I’m not likely to become chemically addicted and I’m managing to take highly addictive, chemically manufactured pain pills (with no dependency). My thought is that weed is natural and Tylenol is not. Natural pain relief seems better than manufactured or none at all.
So, I guess what became a rant about being in pain (my legs have been hurting lately and man the pain sucks!) is turning into a blog question for all you blog readers out there.
Do you think I should try and get medicinal marijuana so I can better function with less pain? Do you think that medical marijuana should be legalized everywhere? What’s your opinion on the whole debate?
I look forward to your responses.
[tags]wheelchair, blogger, medical marijuana, mary jane, drugs, pain relief, tylenol 4, codeine, Spinal Muscular Atrophy[/tags]
I’m really sorry that you’re in pain. I’m a real baby when it comes to pain, and I’m sure that I don’t feel the kind of pain you’re suffering. Occasionally, I’ve had my back spasm and go out, and have had to get shots from a doctor to calm it down enough for things to get better, but that’s just it: it gets better.
Pain really stinks, and I’m very sorry about yours.
Feel better soon, and hey, if you get into medicinal marijuana, please don’t also get into medicinal Bob Marley or medicinal tie dye. : )
I’m a baby, too, but I think I’m already into the medicinal Bob Marley (and don’t tell, but in the 80s, I loved tie dye)!
I hear ya, Dominick. Sitting in a wheelchair all day, every day, is amazingly hard on one’s body. Even though cerebral palsy does not hurt according to the experts, I tend to disagree, more on some days than others.
My thinking is, if you take marijuana without getting arrested, go ahead and try it. Its crazy that marijuana is illegal when tobacco, which causes many health issues, is legal. Doesn’t make sense!
My best friend from college had CP and had a LOT of hip and joint pain, so doctor’s don’t know what they’re talking about!
I have to admit up until 3 yrs ago, I never was in wheelchair. I’m not paralyzed but I suffered a severe head injurie in my truck crash. I guess working on the oil(rigs). I would have never have ever expected this to happen me. I admiit it though being in a wheelchair is not everyones cup of tea. But being in a wheelchair I have found two types of people,: Optimistic and Pesimistic. But smoking a dube makes me feel calm and relaxed feeling . I even asked my doctor about smoking a dube and he said neither yae/nae on it. So alls I know is it makes me good. Seeing how he said I shouldn”t drink booze because of my brain injury. So I say now if I shouldn’t drink, because the doctor says it could kill me. Why not hoot seeing as I have already done that and it didn’t hurt me ( I knew it wouldn’t)
All the more power to people in wheelchairs. Since my accident I have had the odd hoot and it has felt good
I have never wrote into this about such a topic .Thanks
I personally don’t like weed, but I’m strongly in favor of it if it helps sick people. Have mercy on yourself and get some.
Hi Dominick,
Funny about pain. Immediately after my injury when I was nine, lack of pain was one of the key factors to diagnose me as miraculously healed. That is because the pain does not start when the injury starts, but up to years later, after certain body parts have been damaged by not being able to use one’s body normally. I can still ride a bike, but spend most of the rest of my time lying on my belly because it hurts to do anything else.
As long as I didn’t complain, they just assume I had nothing to complain about. Now that I have started complaining, they assume it is psychological in nature because I did not complain or receive help for so many years between the injury and now.
I do not take any pain killers, because I use the pain to tell me when my body is in a condition to do something and when it is not. In addition, medications are administered systemically. Since my hormones, blood pressure and weight are all within normal limits, I do not want to endanger them by exposing myself to the side-effects of medication.
I certainly wish you the best in dealing with the pain.
Janelle
Dominick, you should totally, completely, 100% try using medical THC.
I never had (physical) pain until I was about 22, even though I’ve been in a chair forever and had my back surgery when I was 8. But about 7 years ago, I literally woke up one morning with my leg feeling on fire. The nerves were so inflamed that it literally blistered the skin on my foot. It took the doctors about 3 months to rule out every possible “normal” reason for sciatica, etc… eventually they decided that over the years my nerves have just been so irritated by my posture that the slightest muscle spasm will set them off. I eventually got on a regimen that works for me (including neurontin, methadone, oxy, the occasional soma, etc).
But while I was being made radioactive from all the xrays and MRI’s they ran during those 3 months, the pain had me nearly suicidal within a week. I couldn’t sleep, I couldn’t eat, I thought I was losing my mind. A dear and trusted friend who grows her own marijuana started baking me pumpkin bread with pot-infused butter, and it literally kept me alive until the doctors got me on some good meds. But then I was in San Francisco not long ago and tried some goodies from a friend’s supply — she has CP and has it prescribed — and it was a whole other level. The dispensaries are able to titrate the dosage perfectly, and there’s such a huge spectrum of varieties to choose from. One lollipop stopped my pain for 6 hours, without making me sleepy or thick.
If it were legal and dependable in my state, I have no doubt that I could get off most off the addictive narcotics I’m on now and control my pain through a few cookies or lollipops a day. You should *definitely* check it out.
And in the meantime… you’re not alone.
Hi!
I came across your blog while researching how to help my brother.
My brother, Ryan, has MS. He is 30 years old now and was diagnosed 10 years ago. He has been in a wheelchair for the past 6 years.
I would say about 3 years ago he started experiencing pain from sitting in his wheelchair. Last year i remember it getting worse and worse. As of now he is basically bed ridden due to the fact that it is too painful for him to sit. He doesn’t even get relief anymore when NOT sitting – it just constantly hurts.
Ryan a couple of years ago didnt let a wheelchair or MS get him down. He was the happiest, most optimistic guy making the best of everyday. Honestly he was an inspiration. Now I see his spirits getting down and him not being able to live life.
We have tried everything I know of. He has a roho cushion, he has a tilt wheelchair, he goes swimming, he does yoga, we’ve changed his diet etc. He smokes pot, he has medicinal marijuana etc. Nothing seems to help. He says taking a percocet will help more but he doesn’t want to take those very often.
Is there anything you can suggest/recommend to help ease the pain? Does this happen to you? And what do you do?