Been thinking how this is the umpteenth Saturday that I have been out of work and I have to say not working on a Saturday night is weird. I had worked nearly every Saturday since 1996, with the exception of when I had to take the day off for family functions or vacations. It sucks to be disabled and I still cannot believe how fast things went from sucky to downright horrible in four months. In four months, I went from working two jobs, to working none. After fourteen years of working at a major medical center in the heart of academia, I was done, finished due to chronic pain cause by a disc fragment the size of an almond pressing on my nerve roots. This didn’t happen overnight. It took ten years to progress to a condition called Complex Regional Pain Syndrome (CRPS), all due to the fact that after my foot drop, I never regained strength in my foot/ankle enough to walk like a “normal” person or at least the way I walked before this fragment wrecked my life forever. I still remember going to a physiatrist that my psychiatrist highly recommended, only to be told that there was nothing to be done. That I was to live my life as is for the rest of my life. That my foot slapping and weakness was never going to get better. I just wish that he took the time to give me some alternatives other than this. If I perhaps was put into an AFO (Ankle/Foot Orthotic) sooner rather than later, maybe the outcome would have been different.
I have been trying to work on a comparison paper for the past few weeks and have hit a road block. I don’t know where I want this paper to go and am stumped as to who to ask for help with it. It was my idea but the depression of last month kind of through me for a loop and I am now trying to get back to my writing. The hard part is that I think this paper sucks, or rather that my writing sucks, and I just can’t move forward on it. I lost whatever it is that I was thinking when I first wrote the paper and I just can’t get back into the groove. It is very frustrating. And having to deal with my ankle flaring up every night for the past three weeks has not been helping me. All I wanted to do today was work on this paper but after I read what I wrote I just felt defeated. I don’t know if there is any salvation in what I wrote. I do know that my own criticism of the paper is what is getting in the way. I think it is stupid and doesn’t have any merit, but then I think all my “good” papers are that way. Today I got a good review on my psychological pain paper that I wrote in college. I am still trying to work out how I can go back to school. I want to be able to finish my degree. I am just working very slowly to actually getting up the nerve and doing it. I just hope that I still have time for my credits to still be worth something. It has been four years since I left college due to a psychotic break. Talk about being psycho. Books, email, and the radio were “talking” to me. I was utterly convinced that every song on the radio had a hidden message for me, that all my emails were somehow going being linked to the biggest asshole in the hospital I worked at and he was going to get me fired. While I was reading books or papers, the words were “dancing” and speaking to me in different languages that only I could decipher. Not to mention the voices I was hearing and the paranoia I was feeling from the asshole. Then when the normal meds were still not working, I had to go into the hospital again to get things sorted out because I developed another delusion that a coworker was going to kill me. I was sincerely convinced that she was. But once my meds were on board and I had to take them, it made thinking difficult for me. I no longer could distinguish my thoughts from the voices and when things were silent, I just couldn’t function. I have been hearing voices since I was five years old. I learned to adapt to keep them a secret but when you take meds that are meant to control them, everything stops and you just cannot think. I had a hard time reading and writing. I found that I would read the same paragraph over and over and not comprehend what it was. Words lost their meaning. It was a very difficult time for me and so I decided that school was causing me a huge stress and had to be cut out. I just had to focus on my jobs and getting back to good. Unfortunately, this still hasn’t happened. But I am hoping that with me not working, I can finish my degree. I just am fearful that I will become psychotic again from the stress of deadlines and exams.
Tag: neurology
A Letter to Normals from a Person With Chronic Pain
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about school, my family, my friends, and most of the time; I’d still like to hear you talk about yours, too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, it applies to everything. That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to “get my mind off of it”, may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder”. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can’t be put off or forgotten just because I’m somewhere, or I’m right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone. If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general. In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the “normalcy” of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.
Post CES (Cauda Equina Syndrome)
These are a few suggestion for those suffering from Cauda Equina Syndrome, post op and are recovering from cauda equina syndrome.
- Scotch tape on feet can help with nerve pain. For some reason it can block the signals and the vibration type of feelings.
- Don’t expect doctors, nurses, or any other health care professional or specialist to know about CES. They just have a vague clue or the textbook version and will not be really helpful in dealing with your suffering. Find someone who is!!
- Muscles spasms can be helped with magnesium supplements containing magnesium hydroxypatite, citrate, and oxide. Vitamin Shoppe (www.witaminshoppe.com) sells this version as magnesium complex for women but men can take it as well. Be careful though as too much mag can cause diarrhea.
- Quinine (hyland leg cramps, also found at vitamin shoppe) is useful as well as the other drugs your doc might provide. Drinking Tonic Water also can help.
- For bowels, senna is good. Taking too much can cause cramping as I found out much to my chargrin. This is available in multiple forms, from pills to tea.
- Miralax is also good as it loosens up stuff. Only downside I found when taking it daily is that is can cause watery stools. Some people have found this helpful, others not.
- Although the docs might prescribe fiber, it might back fire as it can cause gas with friends. Use with caution. If you are the health conscious type, veggies and bulk foods will work.
- Carrot juice as also been helpful for some people with constipation
- If you have numb feet, be careful/mindful of walking outside during hot weather as it is very easy to get burns on hot surfaces such as decks and patios. Checking the areas for blisters, scratches, or cuts is also a good habit to get into after walking on the sand on beaches to make sure you didn’t injure yourself. Consequences can be severe infection to ulcers that don’t heal.
- For foot or any ulcers that don’t heal, try Manuka honey. It is popular in the UK (United Kingdom) as the treatment for ulcers or wounds that do not heal to traditional treatment.
- Foot/leg/ankle nerve pain is common. It is characterized by burning, stabbing, shocks, jabbing, jolting pain that wakes you or prevents you from a sound sleep. Medication for this is trial and error as not everyone reacts the same. Common drugs used to treat this are:
i. Gabapentin (neurontin), lyrica (pregablin), lamictal (lamotrigrine)
ii. Tegretol (carbamazapine), zonagran (zonisamide), Trileptal (oxcarbazapine)
iii. Trycyclic antidepressants such as amitryptaline, nortriptaline
iv. Cymbalta (duloxetine)
- Bladder problems. Self catherization is common. Having a “bathroom bag” is important for outings and to store trips. These include a change of clothes, underwear, diapers, or other essentials to toilet care, including baby wipes (non alcohol preferred). Use of purell or other antiseptic lotions in the bags can help decrease UTI’s (urinary tract infections)
- Bowel problems can be reduced based on diet and a routine. Some people have found it helpful to set a day a side to use as a “bathroom day”, others use the remedies above to make sure they go, though if continent, diapers are available and can be purchased discreetly through the internet, if you are shy like me in purchasing them through Walgreens or CVS. Use of wipes are helpful as not everyone can feel they have gotten everything and helps prevent skid marks.
- The embarrassment of an accident cannot be underestimated. It is a loss of dignity that hurts like hell. Write to the group about it helps. Don’t keep it inside. You are not alone with this!!!
- Use of any omega 3, flax seed oil, evening primrose oil (for women, helps with menstruation) and other anti oxidants can help decrease inflammation. Found in various health food stores. Does take a while to build up so please be patient!
- Alpha liniolec acid (ALA, though not to be confused with the omega 3) can help. Some people take 600-1200 mgs. This can cause your urine to smell like asparagus but increasing water intake helps. These are found in various health food stores. Like for use of the above, does take a while to work. Please be patient!
- Yes it is possible to have kids after CES with the right care and that the baby and mother is ok physically. Always consult with a doctor about this, though we provide opinions we are not health care professionals.
- Check vitamin D level. Even if ok, should supplement. Vitamin D deficiency has been associated with chronic pain as well as other chronic immune disorders/diseases. Since I have been replenished, I have not had a bout of bronchitis/pneumonia. It takes a while, especially if you are low (<20) to build up your levels, even with prescription strength D. Supplements should be 1000 IUs or higher and taken every day until level is between 40-70 then taken every other day to avoid toxicity (>100 but this happens if taking a LOT of d (>10,000 IU/per day over a period of time). Just my opinion!!!! Most doctors do not know the full benefit of being D deficient versus non-deficient . Research this if you like but it helps to be a normal level than not in the long run!!!
- Get support through www.caudaequina.org. It helps knowing you are not alone.
Ankle Chronicles, Part 2
Been 72 hours since the pain in my left ankle started and the swelling has been intense. I have not been able to get the swelling down even a notch despite elevating it and putting ice on it. I have tried to rest but I get so antsy that I have to go downstairs to munch on something or to go to the bathroom. I hate going downstairs more than having to climb up. Going down I have to go one step at a time and because my proprioception (sense of sensing) is off I have to look at where my feet are before taking the next step or risk a fall down the stairs. I’ve been lucky so far as I have been able to catch my balance to avoid a fall but that is because I am holding the banister for dear life while I go down the 15 or so steps, one at a time like a little kid.
I remember I used to make fun of my childhood friend who went down the stairs one at a time, but that was back when we were kids. Now I’m an adult and don’t trust myself to go one foot over the other because my nerves are messed up due to Cauda Equina syndrome. It is a painful nerve condition that is caused most likely by prolapsed or herniated discs that affect the cauda equina (horse’s tail) bundle of nerves. These nerves are what controls all nerve and motor function below the waist. Because I was “lucky” enough to have this happen to me twice in 5 yrs, I am now left with permanent nerve damage in my left ankle/foot/leg, specifically, my peroneous muscles and tendons. These muscle and tendons are what causes my ankle/foot to go out to the left while walking. Because this is not normal walking, the muscle and tendons are constantly being inflamed by me pulling on them. They are not supposed to used while walking but I am forcing them to. Plus because I still have weakness in my ankle that does not help. This weakness when added to fatigue makes me walk worse.
Again the weakness was caused by CES, Cauda Equina Syndrome x 2. You never realize how much you take for walking for granted until it is taken away from you. I used to be able to walk miles without difficulty. Now I am lucky to go three blocks without pain. My life sucks. I hate not being able to walk for exercise or for traveling. Now instead of walking to the train station that is a mile away, I am forced to take a bus. I am grateful that I can get a seat most days and that I don’t have to stand on the bus because that just puts added pressure on my tendons.
Not too many people really care that I walk with an AFO (ankle foot orthotic) brace. Only small children will stare. Most adults won’t even notice. I went to my Aunt’s 90th birthday party a few months ago and though I was wearing my AFO, no one really said anything until I walked toward or away from them. But they are my family and love me anyway.
Because I had worked as a lab assistant, my job could not accommodate my restricted walking so now I am out of work. I am on disability. I feel like a sleeze bag because I can’t work anymore. It kills me to not have anything to do day in and day out. Most days I stay inside because I just don’t have the energy to go out, even if it’s just for a cup of coffee at Starbucks. Lately my time at home has been increased to the point that I might go out just to get a soda. Having to rely on the bus and bus schedules makes you regret having to go out. Sometimes the bus is on time and all is right with the world. Most of the time it is late. And it sucks having to stand and wait for it. Even though I can have a seat on the bus, there is no bench to sit on at most bus stops. And standing is truly what causes my leg pain to flair up. I take medication but only if I’m home. I stopped taking it when going out because it caused me to have dizzy spells and to feel out of it at times. Better to feel out of it at home than while out on the street.
And now it’s the day after I load myself up on meds to control the pain. I usually feel ok after I have a day of meds but sometimes all it talks is to go up and down a flight of stairs to aggravate my damn ankle/nerve injury. The “simple” act of going up and down stairs can be torture for me. People take it for granted until that sprained ankle or hurt knee is involved. Then they realize it is not as simple as one might think it to be.
So that is my chronicle for today. Thank you for reading.
midnightdemons7 
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