Many disabled users?

Discussion in 'Community Discussion' started by elf69, Feb 16, 2017.

  1. elf69 macrumors 68020

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #1
    I am disabled and suffer from a progressive condition.

    I suffer from CMT (Charcot-Marie-Tooth disease)

    CMT is a genetic condition that damages peripheral nerves. These nerves are responsible for passing on commands from the brain to the muscles (motor nerves) and for passing information to the brain about sensations, such as pain, heat, cold, touch, importantly for balance – where your joints are in space (sensory nerves). When these are damaged, people are said to have a neuropathy.

    Because of this nerve damage, people with CMT may find that some of their muscles become slowly weaker over the years, particularly in their feet and hands. Some find that feeling becomes duller, or numb, in the same areas.

    In the UK, around 25,000 people are thought to have CMT, making it the most common inherited neurological condition.

    I have lost the use of everything below the knees and wear leg supports to walk.
    I have lost use of my thumbs and my hands are getting worse.
    I also have a small heart too.

    But I'm doing ok, at 15 was told by 20 be in wheel chair.
    Im 33 next week and still walking.

    My balance is getting worse though.

    I am also hyper sensitive to cold and cannot sense heat properly.

    I did write an article about my condition for a support group but quite long so will not post here.
    Do not want bore you all.

    Do other members have problems they have to deal with?
     
  2. Plutonius macrumors 604

    Plutonius

    Joined:
    Feb 22, 2003
    Location:
    New Hampshire
    #2
    I'm sorry to hear about your condition and it sounds like you are doing the best you could with it. You have a real disability unlike many people claiming to be disabled nowadays (many on SSI disability).

    Everyone has both physical and mental problems that they occasionally have to deal with. They all affect quality of life but most aren't disabilities.
     
  3. elf69 thread starter macrumors 68020

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #3
    I do not claim much disability.
    They give me £80 a month only due to my hot and cold sensation issues.
    As you can imagine it makes cooking hazardous.

    I learn to adapt to keep going.
    My own Dr told me to stop adapting and I can claim all sorts.

    Thing is A) I dont want give up. and B) there are plenty worse than me.
    If I claim it and not need it I am only taking from someone who does need it.

    I still work a 9 to 5!
     
  4. Septembersrain, Feb 16, 2017
    Last edited: Feb 16, 2017

    Septembersrain Contributor

    Septembersrain

    Joined:
    Dec 14, 2013
    Location:
    Texas
    #4
    I have POTs. Postural Orthostatic Tachycardia syndrome. It causes me to have a high heart rate, pass out, experience angina, and a couple other unpleasant side effects like exercise intolerance.

    I've also got fibromyalgia as well. My body temperature doesn't regulate properly at all. I'm either hot or cold, I don't think I've been "comfortable" in years honestly. I'm always in pain, no matter what. Very few things relieve it. Thankfully one thing does, it's my medication for...

    Anxiety. Alprazolam helps with the pain and anxiety. However I try not to take it often as I build tolerance easily to it.

    I'm insulin resistant, though thankfully the beta blocker Bystolic for my POTs helps keep my blood pressure in check.

    Bursitis in my shoulders and easily dislocated knees are a pain, literally. However I just try to deal the best I can with it.

    I'm glad to hear you're still walking! You've really defied the doctors predictions. I'd be really proud of myself. You're awesome. Just saying. =)

    Edit: I'm out of work temporarily but I intend to go back. I'm not on disability. They've put aside putting in a pacemaker so I think I'm getting closer to at least working part time to start!
     
  5. elf69 thread starter macrumors 68020

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #5
    Wow you got alot to deal with there too.

    I had a friend with M.E. and fibromyalgia.
    sadly few years ago she passed from septicemia at only 24 years old.

    I need get back on pushbike to keep my remaining leg muscles going but few years back was hit by a van while on my bike and not ridden since.
    It caused further damages to my hands which makes using the brakes uncomfortable.
     
  6. D.T. macrumors G3

    D.T.

    Joined:
    Sep 15, 2011
    Location:
    Vilano Beach, FL
    #6
    Just quoting this to say you are awesome. Keep the positive outlook!
     
  7. elf69 thread starter macrumors 68020

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #7
    Thanks D.T.

    to me though it is normal.

    outsiders says they don't think they cope how I have.

    I just learnt to cope, I don't have mindset to roll over and give up.
     
  8. Septembersrain Contributor

    Septembersrain

    Joined:
    Dec 14, 2013
    Location:
    Texas
    #8
    Septicemia is a nightmare. I had preeclampsia/Toxemia during my pregnancy. My son passed three months later. I'm sorry your friend passed so very young.

    Goodness. You've had a rough time of it huh? I've been in a few car accidents where I was the passenger, they think the concussion and 2 inch piece of glass that was in my head might of been the cause of fibro. Injuries really make any previous conditions worse.

    I have an elliptical I use when I'm feeling well enough. I still do household chores to keep myself standing and the passing out is not as frequent. I bet like me you think about the future a lot right?
     
  9. AlliFlowers Contributor

    AlliFlowers

    Joined:
    Jan 1, 2011
    Location:
    L.A. (Lower Alabama)
    #9
    @elf69 We have similar conditions and outlook. I have chemo-induced peripheral neuropathy. My oncologist recommended disability for me, but I just gave him a funny look. Although I cannot walk without a crutch, I do work full time. I wear open toed shoes all the time because any compression makes me swell, and increases the burning sensation. Meanwhile, it doesn't matter what the temperature is, because my toes can't sense the heat or cold. (Or ant bites!) It's not as severe in my hands (thank goodness!), but there are times that my fingers will go completely numb with no warning.

    It's all made me far less patient with people with minor problems who treat them like the world is coming to an end. Put on a smile and pull up your big girl panties - you're alive.
     
  10. elf69 thread starter macrumors 68020

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #10
    I agree very much about those who have minor issues and claim its end of world.

    I know someone who is faking back problems and claiming all sorts.

    blood boils over it!
     
  11. elf69 thread starter macrumors 68020

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #11

    Yes I do @Septembersrain
    Me and my fiancee wish to marry one day.

    My condition generally does not effect lifespan.
    But makes thing harder over time as it is progressive :(

    My strain is X related.
    If we have children my sons will escape it but all my daughters will be carriers.
    My mum is a carrier.
     
  12. AlliFlowers Contributor

    AlliFlowers

    Joined:
    Jan 1, 2011
    Location:
    L.A. (Lower Alabama)
    #12
    What kills me is people who take handicapped parking spots! I understand that you don't always see a handicap, but too many people take advantage.
     
  13. Septembersrain Contributor

    Septembersrain

    Joined:
    Dec 14, 2013
    Location:
    Texas
    #13
    I had a son. He passed at 3 months. I had toxemia during pregnancy. We both had to stay in the hospital a while. They wanted to do a C-section but he was too far down. Episiotomy, failed epidural, and far too long in labor. It really stays with me.

    I feel if I ever want children again, I'll adopt! I definitely will never give birth again. Besides, I'm sure there are many children out there who need homes. Plus I can skip diaper duty. Massive plus! Haha.

    I can't imagine how it would feel to try for children but fear that your child will potentially suffer a painful life like you have. I just wish you the best on whatever it is you decide.
     
  14. elf69 thread starter macrumors 68020

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #14
    me and my fiancee would like kids but after 5 years not happened so probably will not.

    We both actually like to care for other peoples children and actually like disabled kids, down syndrome etc.

    We have talked long about it.
     
  15. elf69 thread starter macrumors 68020

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #15
    Old thread but I started it so think safe dig it up.

    I'm still working, still walking.
    Hands are much weaker though :(

    Unable use a pen for more than couple minutes literally.
    But can use some touch screen stylus ok for a bit and my Wacom tablet stylus is ok, which is odd.

    neither hand can make a fist now. I can only half close my hands.
    can close more on right than left hand.

    right hand baby finger has all but lost all movement.
    My finger have become very very thin due to the muscle loss.

    This is also making my hands cold all the time.
    The cold then makes movement difficult and the circle goes on...

    But I'm still going and that's main think.

    I have recently been put on a new benefit too, I am entitled to this indefinitely as I am unable to prepare a cooked meal by my self.
    I have a few adaptations around the house to help me.
    I have special cutlery to eat with as cannot hold normal knife/fork any more.
    I hate eating out or at friends as either don't have my special items or I feel embarrassed (if pre planned meal) using my special items while out.

    I have a special gimbal for the kettle too, as once filled with water I struggle to lift and tip it.
    so this gimbal prevent accidents etc.
     
  16. eyoungren, Feb 16, 2018
    Last edited: Feb 21, 2018

    eyoungren macrumors Core

    eyoungren

    Joined:
    Aug 31, 2011
    Location:
    ten-zero-eleven-zero-zero by zero-two
    #16
    I'm not in the same league as the people in this thread, but I will mention my condition.

    Lifelong sufferer of Psoriasis, which if you are unaware about is a skin condition that affects longetivity of skin cells.

    Most skin cells are created and then die off within 28-30 days. Psoriasis, as an auto-immune disorder, hastens that rate so that skin cells die off within 14 days or so. The accumulation of the dead skin cells cause red, angry looking patchs with raised, silver scales that look like white scabs.

    It's very itchy and when dry can be a nuisance. Because my immune system is always compromised it means there are other issues I have such as allergies and an easy susceptibility to infection. Bronchitis and sinusitis are often problems I deal with.

    In any case, I'm fortunate because there is a pustular version of Psoriasis that I do not have. Dealing with the constant flaking and the white carpeting of just about everything in the house because it all sloughs off is way more than enough.

    At any given time I'm anywhere from 10 to 80 or 90% covered with it. You begin to realize where you have skin in odd places because you find Psoriasis there. I particularly detest it inside my ears and on my face.

    I've had this since i was 5. That was actually a good thing though. People think it's catching and go out of their way to avoid you. Some people look at you like you've sprouted a second head or something and don't want anything to do with you. Depression is a common ailment because society is rejecting you based on your appearance.

    But because I was 5 when I got it and my desire to continue to do what I normally did I developed a 'screw-you' attitude to those offended by me. It's not my problem that you have a problem with the way this looks. I'm not choosing to look this way, but I refuse to wear long-sleeve shirts when it's hot and I'm not going swimming in a burkha. Deal with it.

    That attitude got me through all of school until people either became aware enough about the disease or grew up. Things would have been different for me though had I developed this much later in life.

    I also learned how to deal with intense itch. You can't walk around scratching yourself raw and bleeding every day in public, so you learn to deal with it by focusing on other things. It's so much a habit now that unless the itch is severe my body just tunes it out.

    The worst though is when it's dry enough that it cracks. Because then pain becomes part of it.

    Finally, there's also the neat Psoriatic Arthritis part that hits your joints. So not only are you itching and flaking you're also aching.

    In any case, considering what else is out there and what I am NOT suffering from this is a very small thing to bear for me.

    Oh yeah. Meds work. Particularly, Enbrel and other biologics. The problem is they are expensive. So dealing with it without meds is usually the normal condition for me.
     
  17. elf69 thread starter macrumors 68020

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #17
    i've known a few people with this flaking skin condition.
    Not something I wish on anyone.
     
  18. elf69 thread starter macrumors 68020

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #18
    Firstly sorry for length of this post.
    This is the article I wrote back in 2010 about my condition and how I coped.
    It has worsened a bit since I wrote this, but most importantly..... I'm still NOT in that predicted wheel chair!



    CMT The biggest disease no one has heard of

    My name is John Hosking and this article is to promote awareness of CMT and show how I have coped with it through my life.

    What is CMT?

    CMT is the abbreviation of Charcot-Marie-Tooth. CMT affects approximately 1 in 2,700 people which make it as common as MS, yet few people have heard of CMT.
    CMT is a hereditary condition which can affect males and females.
    CMT is a degenerative condition that attacks the motor and sensory nerves in the body. It effects how the signals travel to and from the brain. The signals in a CMT sufferer are not as strong as a healthy motor or sensory nerve. This signal loss in motor nerves leads to muscle wasting and many CMT sufferers become very thin due to this, much like me. As this progress's it makes even everyday tasks more difficult, as I shall describe in the article. In the sensory nerves the signal is slow reaching the brain or may not reach the brain at all, this makes handling hot or sharp items dangerous, as the hands may not send the signal to the brain that the item is hot or sharp.

    My life with CMT

    Firstly I'm a fighter and tend to struggle on not asking for help and cover up my problems, which is probably something I should not be doing when I'm trying to cope with CMT.
    The strain of CMT to which I have seems to affect the motor nerves but not the sensory nerves at the time of writing this article, although this may change in the future.
    I was born with CMT in the mid 80s when very little was known of CMT. My granddad had a dormant CMT jean, but he suffered polio and this triggered the jean. My mum carries the CMT jean but shows only very small signs of it herself. I was labelled as a quiet or lazy baby as I was not very active and didn't move around much. I was late learning to crawl and my speech has always been a little slurred.
    When I started primary school I had already developed the high foot arch and was lifting my feet very high to walk due to the foot drop. I was at a small school in a village and most of the other children knew me so this was not a problem. In my last year of primary school I had a nerve test on the recommendation of my GP; this showed that I had CMT. Very shortly after this test I was fitted with AFOs, these are leg braces that prevent movement in the ankle. These braces have helped me a lot but they do prevent me doing some things too. I am not able to run or jump in them, which at the moment is not a problem but back in school it did present a few problems. When I started secondary school things changed. Physical Education was the lesson I really disliked and was when I was taunted most about my AFOs. I did take part in P.E. for roughly 6-9 months but I was not able to continue and got a letter from my GP stating I was not fit to take part. I did get picked on quite a bit at secondary school due to my CMT and my physical appearance. I did make some good friends despite this and some still last to this day. I learnt to adapt over the years as it slowing got worse to the stage of the last year in secondary school I was given an electronic word processor to help me as I found holding pens for any length of time difficult and my writing became very messy. Towards the end of secondary school I was given a prediction of how my CMT may progress, this prediction said that I would be in a wheelchair at the age of 20. I'm a fairly positive person and through all the taunting and bulling at school it never really upset me, and I just ignored it. This prediction was not something I wanted to hear at the age of 15. I decided that I was not going to let it happen and really started to use my bicycle a lot more. I would ride it everywhere I went, including to college after I finished at secondary school. The college to which I enrolled was some 14 miles away and I would ride that most mornings unless the weather was bad then I'd use the bus, and the same distance back in the evenings. Riding my bike did slow down the progress in my legs although as of yet there is no known cure for CMT.
    During later years at secondary school and my time at college I began to notice that my hands where getting weaker and that I had developed very strange ways to open and close my grasp on objects. By the time I had started college I had lost all motor control of my thumbs and as I type this article I am also without control of my little fingers on both hands.
    During the time I have been wearing my AFOs I have been unaware of the degeneration of my feet. The AFOs prevent movement of my feet, they are held at a 90 degree angle while the supports are in place. This has caused severe muscle wasting as they are not used at all. I have no control over my feet at all other than very small movement in a few toes with the AFOs removed. Without these AFOs I am pretty much house bound, which makes them vital for me to stay active. I am also suffering from clawed toes, which is quite common for CMT patients. My baby toes have twisted around slightly and have curled under the toe next to them slightly, fortunately this does not cause me discomfort at present.
    The nerve damage in my lower leg and feet are now bad enough that even with my supports on if I was to stand unaided for any period of time I would fall over. The reason behind this is that the nerves are not sending the signal to the brain that my feet are level, so the brain has to guess where my feet are, and it gets it wrong sometimes and I have to catch myself from falling over.
    I am also experiencing lower back pains which at times can be bad enough to cause me to pass out; thankfully this is rare at the moment. During the day I have noticed that my lower back is quite tense but the pain is normally when I relax at night in bed. During the day I sometimes get a painful shock in a joint if I move and catch it wrong but I can deal with these incidents. These painful joints during the day have started to worsen in that joints after the painful joint can temporarily become paralyzed. For instance if my elbow has this short, sharp pain then sometimes I am unable to move my hand.
    I rely on my bike to get to and from work at the moment as I do not have my car working at this time. I do not qualify for transport help as I have adapted too much on my own to get help and as such I persevere with the bike. My legs are now deteriorating faster than the exercise of my legs can keep up with and this is going to mean I will not be able to ride my bike eventually. Without the bike and without the car means I will find things difficult. Although I am able to walk I do suffer tight chest or pains in chest after a fairly short length. My CMT seems to come in waves rather than a constant deterioration. I may have a good period of 6 to 18 months of little noticeable difference from day to day, and then all of a sudden I may have a 6 to 9 month period when things seem to go down hill quickly. Oddly at the end of every bad patch there seems to be a small improvement just before the calm 6 to 9 months of little change. During the bad stages things can be difficult; I am usually tired a lot of the time during the day but not so tired in the evenings. The back pain I talked about before also does not help me get a good night sleep either. CMT can affect other things in the body as well and this varies depending on the individual. With me, I find it hard to regulate the temperature of my body; not helped by poor blood circulation. Even in the height of the warmest summer my hands have been know to feel like blocks of ice!
    The severity of CMT in my hands is very noticeable, if I am asked to pick objects up.
    In order to open my grasp I tilt my hand down and to close this grasp I am forced to lift my hand up again. My grip is quite poor and if objects are of a certain size I am unable to release my grasp enough to fully let go, in some situations I have to use my other hand to remove the object from my first hand. This will only get worse with time; it is already causing problems on the bicycle as my braking force is not as strong as it used to be. This muscle wasting in the hand can lead to a clawed hand or curled fingers. This is when the muscles have completely wasted away completely and only the tendons remain, as the tendon is no longer in use due to the muscle wasting they dry out and shrink. This causes the fingers to slowly curl over until they are fully curled over and no longer able to be moved. This then causes severe problems with simple tasks, like getting dressed. I mentioned before that my thumbs had lost all motor control as well as its muscles but as of yet they have not begun to curl over. My little finger on my right hand has not yet lost all its motor control but it has begun to curl over, it can be straightened with my other hand but always returns to a slightly curved position afterwards.
    My mum has recently noticed in my hands which I had not that my little fingers and the finger next to them have developed a small tremor to them sometimes.
    Due to the severity of my CMT I have problems making my own hot meals; I rely on my parents for these. A simple meal like bowl of soup is difficult as I am not able to use a tin opener to open the tin. My hand grip is poor and I find lifting heavy object like pans or kettles very difficult. As my hands worsen I am only going to find things more and more difficult.
    I am experiencing an increased deterioration in my legs, riding my bicycle is slowly getting harder as I loose the muscle mass in my legs. I am beginning to experience craps or pains in my upper legs while riding my bike home from work which is all up hill.
    Also after riding home I have sometimes experienced a tight chest or slight pains in the chest. It is not uncommon for some CMTpatients to have difficulty breathing under strain of exercise as the diaphragm muscles become weaker.
    Every muscle in the body can be affected by CMT, including one of the largest in the body, the heart. I personally have problems with my heart due to CMT. My heart is smaller than a person of my age without CMT; my heart is roughly 2/3 of the size of a healthy heart in a person of my age. This can and does cause a few issues, the tight chest and chest pains is likely to be due to putting the heart under increased strain.
    I am quite conscious about my CMT and how it is slowly limiting what I am able to do. This has made me slightly less willing to go out on my own and even with friends I'm always thinking about where we are going and who is likely to be there.
    I think I am ready as I'm going to be for what my CMT has in store for me in the future.
     
  19. D.T. macrumors G3

    D.T.

    Joined:
    Sep 15, 2011
    Location:
    Vilano Beach, FL
    #19
    Amazing read, your positivity is incredible (I had a family member go the opposite way, not much you can do when they give up ...)

    Thanks for sharing.
     
  20. elf69 thread starter macrumors 68020

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #20
    I have thought of giving up.

    I was born with this and it can get you down at times.

    But at end of day what will that achieve?
    It be the reason no body come see me.
    So then you get down more and never ending spiral.

    To me I dont seem and stronger willed than the next guy/girl.

    But when people know the the back ground as above they change their views quickly.

    I dont share with just anyone but everyone here is supportive and helpful so feel ok.
    I even left my real name in, lol
     
  21. A.Goldberg macrumors 68020

    A.Goldberg

    Joined:
    Jan 31, 2015
    Location:
    Boston
    #21
    Wow, what a read. I always find it fascinating to read some of the backgrounds of people here, such as yours. I would have otherwise never known about this disability you have to manage. But I am thoroughly impressed at how well you are managing it and your positive outlook. You seem like an incredibly strong person to continue your life as normally as possible and not give up.

    Everyone in life has their struggles, some physical, some mental, some financial, some social, etc. But I think what really defines us as individuals is how we manage or overcome these challenges.

    I’ve had my fair share of health issues, most notabetly leukemia, as a child, herniating a couple discs in my back, and a few bouts of autoimmune pancreatitis- some of these having some lasting side effects... but nothing compared to what others face on a daily basis.

    I’m reminded of the late Stephen Hawking, who of course had ALS and yet lived a productive life until his 70’s (which is amazing considering his disease). He had multiple wives, multiple children, and still continued living his life as best he could despite only being able to move a single muscle in his face. Truly a remarkable man, as is any who overcomes their disabilities.
     
  22. elf69 thread starter macrumors 68020

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #22
    I agree.

    it's not the hardships that make/define the person but how the person overcomes them that makes the person.

    yeah my post is bit long sorry for long read everyone.
    But I'm glad to teach and show others how I coped.

    Thankfully I have a less invasive strain of CMT, it could be worse.
    There are some pre teens who are almost "cabbage" state.

    This must be real hard for anyone to deal with like that.
     
  23. AutisticGuy macrumors member

    Joined:
    Feb 1, 2018
    #23
    I'm sorry you have this condition, elf69! That's a lot to go through. It almost sounds like ALS, except with a slower progression (thank God). Are you provided with physical therapy/occupational therapy in an attempt to keep muscle strength and to keep those motor neurons firing? I'm going to school for physical therapy, so I guess it's what I think about with a condition such as yours.

    My screen name makes it obvious, but I have high functioning autism. This means that, in order to make it through each day, I need to try to pass as non-autistic (we refer to non-autistics as neurotypicals).

    What happens with my condition is my brain receives too much sensory information. As a result, the parts of the brain that are supposed to interpret that sensory information become "flooded" and as a result are unable to function, or function very poorly. So I don't have access to the part of the brain known as Theory of Mind, for instance, which allows for the ability to learn social functions in a more effortless manner. So I might not be able to figure out if it's appropriate to send a Christmas card to a friend of mine who's a female, for instance. Would that be considered inappropriate? Would she get the wrong message? As a result, I'd opt to not send anything because I wouldn't want to take the risk. This could lead to an embarrassing situation where I receive a Christmas card from this person, but I didn't send one to her, as an example.

    Since I make an effort to fake being non-autistic so I can function professionally, I have not "come out" about my autism to friends, family, and professional peers/students. So, in order to pass as non-autistic, I've developed a "script" which is an internal database of lines that I use based on what a person says to me. Example:

    I somebody says, "Good Morning, how are you?"

    I can reply back with the following:

    "I'm doing well." Correct grammar but too formal, will make me seemed stuck up.
    "I'm doing good." Not bad, but I have good annunciation which can make me sound formal, let's lighten in up.
    "I'm doin good." Better. Just emphasize my Jersey accent and I become relatable.
    Other options, "I'm doing okay. I'd complain, but nobody'd listen." Usually reserved for people who appear to be blue collar.
    "I'm doing great, the weather is fantastic!"

    You get the idea. Anyway, the real me who would speak with a flat affect and use formal language and would look to the lower left side towards the ground when talking to somebody; that guy doesn't get to show himself.

    The are other challenges:
    -I have trouble recognizing faces if I haven't seen them in a few days
    -I have trouble with names
    -I have issues with stimming such as biting my right index finger to the extent that it has a permanent scar on the posterior surface, and a callous on the anterior surface. I can also hit myself in the head when I'm extremely upset, but doesn't happen often.
    -Because I'm depending on the analytical side of my brain to pass socially, each social encounter brings about a lot of anxiety. I used to ski race, and when I was at the starter's gate, I'd be so nervous and I'd have butterflies in my stomach. I get that same feeling when I go to school or work. My adrenaline is constantly pumping.
    -When I get home, I'm mentally thrashed.

    I guess the big issue to me is that I'm good at physical therapy. I have good clinical skills and reasoning. I can reason through more challenging diagnosis to come up with a way to improve patient function. I'm even known for being able to motivate patients who are difficult to deal with, and don't want to participate in therapy. So, I'm a functioning member of society and an adult.

    Yet, I can't figure out if I should send a Christmas card or not. And even if I could ask somebody, it would be this almost adolescent conversation in which this person would have to explain the correct protocol in a simple way I could understand. And when I come home and after I exercise, I immediately get into loose fitting pajamas because wearing regular clothes causes sensory overload to my brain (which makes me feel claustrophobic), and go under a set of heavy blankets in my bed. I need my dog under the covers with me so I can pet him which soothes my high anxiety.

    In a nutshell, for me, the challenge of autism is the child-like state it leaves me in under certain circumstances. All of the times I'm with a group of people in a social situation and have to pretend I understand the conversation. All of the times I take a joke literally. The fact that I'm an adult, but climb under a huge pile of blankets and need to pet my dog like a 9-year-old. The fact that I have to hide who I am, and act constantly.

    Anyway, sorry for the "rant". I'm pretty stressed right now because I'm placed in a clinical office for outpatient and I'm working a lot of hours and dealing with a lot of patients and P.T. staff.
     
  24. elf69 thread starter macrumors 68020

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #24
    WOW that's a hard day!

    No therapy for me, I used to ride a bicycle every where but after an incident with a van (needless to say the van won, but the van was at fault) I no longer cycle.

    I have great admiration for those with mental issues.
    Nothing can be harder or scarier than battling with yourself 24/7.
     
  25. Gutwrench Contributor

    Gutwrench

    Joined:
    Jan 2, 2011
    #25
    Yes, but comparatively minor. I wholeheartedly agree with the sentiment that we dont have control over the hand we’re dealt in life, but we control how we play that hand.
     

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