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Sad And Confused


roxie
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Do you feel like pots has taken away or changed your personality?

I've been sick and disabled by it since I was 12 and find myself thinking about what I really would be like without it. Sometimes it's simple things like looking through and clothes or hairstyles wondering what it'd be like if I has the energy to do my hair or wear makeup. But it's always a trade off, if I want to go somewhere I have to same my energy.

Then when I'm around people I probably seem aloof or withdrawn. I dont laugh as much as I naturally would because there's so much to process it leaves me not feeling well. My head swirls, heart pounds, and im nauseas. It's like theres all this going on around me but some sort of screen between me and it because I'm just trying to survive.

It's been making me really sad. I've been this way since I was 12 and am 27. I haven't had much of a life. My parents thought they were helping by making things "easier" on me like keeping it quiet and dimly lit and calm. Which does help keep me steady but I have no interaction and when I get around it. Like the holidays with my brothers and his wife the lights, noise, and commotion are so much to handle that I never really talk.

I keep wondering if theres a way to adjust to it so i can get more involved on things and not feel so left out but I don't know if it's something that can be overcome or if it has to be pushed through?

I've been feeling really lonely and trapped lately. It's just me and my parents. I want my own life and to be a twentysomething with friends and interests and maybe even sometime find a man. But I don't know how to go about that. Just existing is hard. Do I have no choice but to push through? is it possible to find rest so i don't feel like I'm always about to collapse?

maybe try church small groups or different things. I moved a year ago and so I really don't have anyone, makes the whole thing worse. Is scary to just show up someplace and get involved. Let alone being shy and add pots/eds on top of it.

I feel really trapped like I'm in the movie Tangled and I dream of finding a way out. I don't know if I make sense, I know I want/need a change but am lost on how to go about it. I feel like pots has made me a different person than i could have been.

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Pots cant take away your personality or your will. It can make you really frustrated and sometimes sad.

Its really important that you dont feel lonely though. Hard enough to have a chronic illness without the support you need.

Im sure im older than you, but when i was single, the best way to meet people was always through groups related to interests you have:

singles groups at church, taking classes, hobbies, or even something like a fibromyalgia group. It doesnt have to be pots. It can be any chronic illness. Theyre strugging the same way. Not to mention all the all line social things going on, the dating things, whatever. Just be upfront about your situation and try to find some connections. Ask for help too. Call the director of a singles church group and ask if they can help you plug in by giving you a mentor.

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Yes, I think it's very important to know you are not alone! We probably all feel that sometimes, I know I have! And I know how frustrating it is to WANT to do so many things but never k kw if you'll be up to it at the time, and like you said, having to choose sometimes between the activity itself and the ability to get ready for it( hair, makeup etc..) I think we all have to find our "normal" as frequently changing as that is :) and learn to accept and love ourselves as we are. The more I worry about how I will feel when I get somewhere the more debilitating our condition is. It is so hard, and not having people around you who understand does make it scary, but go slow, find what you want to live for( as you are now), you were made to be exactly who you are so don't sell yourself short. We are not given more than we can handle and even though it really ***** sometimes, you are stronger than you think :) Give yourself permission to have bad days, and try to find the things you want and enjoy that fit you. There will be others that have the same interests and will be compassionate and understanding and support you. Dont give up! You can have anything you want from life, we just have to be more patient in the getting sometimes :)

And I have to say, you may not always feel like laughing, but I bet you have a great personality! I have to agree with badhbt, that unicorn thing is hilarious! I actually quoted it to my husband the first time I saw it months ago :) Now sorry this was long winded, this is the first time I've ever written anything on here. But when I read your comments you were on my heart all night and I wanted to make sure you knew a lot of peoe understand and care and there is HOPE!!

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I keep wondering if theres a way to adjust to it so i can get more involved on things and not feel so left out but I don't know if it's something that can be overcome or if it has to be pushed through?

Not entirely sure this will be helpful:

Scotopic sensitivity syndrome is based on the theory that some individuals have hypersensitive photoreceptors, visual pathways, and/or brain systems that react inappropriately to some wavelengths of light. Vision occurs when photons are detected by the retina, initiating a biochemical process affecting the visual pathways and deep structures of the brain. A growing number of researchers are taking an interest in the view that inappropriate biochemical processing has the potential to cause physiological and/or visual perceptual problems. Many of these problems are grouped together under the label "scotopic sensitivity syndrome".

In simple terms, the theory is that some signals from the eye are not getting to the brain intact and/or on time. Although the eye might be functioning correctly, the brain receives what is like a double exposed picture where the location of items is confused. The brain tries to filter out the bad information and so the conscious mind receives a reconstructed image. That image may be of the items moving (the brain constantly changing its best guess of what is there), blurred outcomes (inability to form a view of what is there), gaps in wrong spots, and a variety of other minor errors. There may also be exhaustion (from the mental effort to unscramble) and sore eyes (from the eyes constantly seeking extra data to aid the process). The problem is worst where different colours do not all give a similar outcome. In nature you get a lot of consistent data but on a man made item (paper, for example) there might be only a limited colour set: the condition does not generate practical problems where there is lots of redundant data for the brain to use.

The pragmatic response by Irlen was not to try to fix the problem but to avoid it. By filtering out the light most likely to generate problem signals to the brain, she was able to improve the likelihood that the brain will correctly distinguish between good and bad information. It also seems likely that in some individuals, over time the brain learns which colours are the problem items and improves its ability to reconstruct an accurate image.

All 3 of my children find that coloured lens glasses help reduce some of their POTS issues they make a big difference to one of my boys, whom is very sensitive to his environment, I am not saying they work for everyone but it might be worth a try!

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Yes absolutely my personality has changed. I've had POTS for a long time too. In some ways I don't even know what my personality would have been like without POTS because I don't think there was ever a time I was completely normal. aahhhh!!

There was a period where I grieved for what I did not have and for what I had to give up.... I had to let go of a lot of things I used to do. I think it's great that your family understands you. So many are battling significant others, friends and family on a daily basis because they think we are lazy or making up our illness etc.

The biggest ways POTS has changed me is that I used to be adventurous, hated routine, loved exercising, working and laying out in the sun. Now I pretty much am the exact opposite. Sometimes I have the issue with noises and lights, but I really don't have that symptom on a daily basis. I really don't know if that's something you can push through or not. But I do tend to push through every single day. My HR will be 170 and I just keep going for as long as I can until the shortness of breath gets too bad. I don't like to compare or tell others to push through though because I don't know what it is like in your body. Only you know what you can push through!! :)

I think it is important to find some peace with yourself. You may want to find people in your area to talk to who understand chronic illness. I haven't found online friends or forums to be particularly helpful to me... No offense to anyone here! It's just not the same as having someone to talk to in person. I don't really connect well with people online as many think my typing sounds "mean". Lots of emotions are inserted into my text that simply is not there. /shrug :(

I'm sorry you are having a bad time!!! Lately I've been reading about healing testimonies and it's really exciting to me. I don't know what you believe in, but that's where all of my energy has been going for the past 5 months. I was already healed of adrenal insufficiency, so I keep continuing on for POTS to leave. Reading and seeing people being healed of incurable illnesses by God is amazing, encouraging and makes me hopeful. Take care. *hugs*

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I have found that my whole life has been changed by the dysautonomia. In fact, it seems to change some every day. I once had many plans, hopes, and dreams that have all been tossed by the wayside now. I used to enjoy many social groups and activities. I always enjoyed music and performing vocally and instrumentally. All of that is either completely gone or has greatly been modified due to the limitations of progressive dysautonomia. I have to say, however, that I have grown spiritually from this experience. I have learned to sort out what is truly important in life and what is just material and superficial. Life is much "richer" and "fuller" now that I have shed all the superficial trappings of this earthly world. I am blessed with the "peace that passes all understanding". So, please don't dwell so much on what you used to have or what you think you are missing - you have a wealth of treasure deep inside and it is just waiting for you to tap into it and receive the blessings that are held just for you and you alone!

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I don't have POTS myself, but I can see where you are coming from. My son's condition got worse and he was not able to go back to school this year. He was very active and outgoing. I quit my job to stay home and care for him. My son has bad days and good days. What works for him is to keep him on a routine. Like go to bed at the same time and try to get up at the same time every morming. He watches his diet because he is trying to lose weight. When he is really feeling good, we try to get out of the house. Maybe just for a walk or a trip to walmart. He exercises everyday 20-30 minutes. Being homebound is not much fun at all. Try to take advantage of the times when you feel like doing something. POTS can be so unpredictable but try to enjoy your life as much as possible. Finding things to do that takes your mind off your illness really helps. I'm so glad you have suportive parents but I can understand your need for independance.

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Anna;

Thats really interesting as i have heard of children with dyslexia found an improvement with the same type pf coloured glasses. There are also green tinted glasses i have seen on the internet that are suppose filter certain spectrums of light out to help migraine. Because there seems to be this pattern with oversensitivity with EDS/POTS/Epilepsy/ADHD ect ect it makes you wonder that these transmitters in the brain, like your article get so mixed up confused. Wouldnt it be wonderful if it was just a case of wearing coloured contacts to help with all these similar types of conditions in the future

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Anna, that's really interesting. I'm going to have to read more about it. What color lenses?

I spent two years as a teenager doing vision therapy because my eyes didn't align, track, or cross properly. I still do the exercises today. If I don't my eyes bother me all day and my headaches are worse

Thanks guys, it feels very hard to remember I'm not alone. At time it's very hard to see the positives and fullness of what's available if I rest in the Lord. I've been down latily. I've had a cold and that threw my pots everywhere. I feel like the little progress I had made and am now fighting to get it back.

Ha. The delusional unicorn. I didn't come up with that. I saw a sign that said "my friend said I was delusional" I added dr, it seemed fitting. I giggle over a lot of things but I'm not clever in quiet in real life so people don't see a lot of personality, it's hard because my brother is very boisterous and people think he's very fun. I've always felt in his shadow. Holidays tend to bring the feeling of living in his shadow out. Add to the fact that he just got married and some of the weirdest moments have made me emotional because I feel so passed over in everything like when will I ever get a chance?  I'm like Tula in my big fat Greek wedding who sits on the couch at night watching tv with her parents....and hating it. 

I am hoping that after the holidays (and possibly flu season) I can find a church group or something with ppl my age. Even my parents have had a hard time finding a church they feel comfortable at since we moved. 

I do like to write, that's one of my interest I try to keep up with. I've written a book and actually recently entered a contest. My feedback wasn't too bad. However writing is a tough career path. Like is said I keep with if even if it's only 100 words a day. 

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badhbt,

The coloured lenses that my children wear are specialist opthalmic grade lenses, we went to a specialist optician that uses a special device to find the colour and contrast that helps the best. If you have a look on the internet you should be able to find a authorised Irlen Syndrome specialist.

diamondcut

It seems to be more plausible now as some new research has been done using brain scans:

The aim of this study is to evaluate the data from a participant in a reading study who had a diagnosis of Meares–Irlen syndrome/visual stress (MISViS). MISViS is characterised by visual distortions and somatic issues, which are remediated using coloured filters. The authors present a case study providing descriptive neurobiological comparisons of MISViS versus a control group. The study involved eleven English language speakers who participated in behavioural and neuroimaging versions of a language experiment with varied proportions of regular and exception words. Behavioural measures included accuracy and response times. Neuroimaging was conducted using a 1.5T Siemens Sonata MRI. The MISViS participant’s data were removed from the overall experiment and analysed as a case study. Impulse response functions (IRFs) and percentage of active voxels were extracted from four regions of interest: BAs 17, 18, 19, and the postcentral gyrus (PG) and two control regions (BA6 and left BA45). The results indicated that significant differences existed between the control group and the MISViS participant for IRF intensity in two regions (BA6 and PG) and percentage of active voxels in four regions (BA17, BA19, PG, and BA6). No significant differences occurred in left BA45 for either variable of interest. No significant differences were found for behavioural measures. In conclusion, our findings offer one of the first neurobiological descriptions of differences in IRF intensity and percentage of active voxels in visual and somatosensory cortex during a language experiment for a participant with MISViS in the absence of migraine compared to controls.

http://rd.springer.com/article/10.1007/s10548-011-0212-z

So it does look like something is going on, plus there seems to be quite some excitement about the use of coloured lenses and reduction in migraine frequency.

i hate bananas,

It does seem like our eyes can be a problem due to the EDS as well, my children have issues with lax eye muscles as well.

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Bananas,

I'm. Sorry you are feeling this way. I developed these issues as an adult and it was difficult to adjust. I would imagine it's even more difficult when you miss a lot of the social interaction of your teenage and 20's yrs which is when you do a lot of finding yourself as a person and a lot of confidence building.

I have 2 things that might help you:

1) I have hyperacusis and light sensitivity nut I desensitized myself slowly (mostly to the noise issue) by exposing myself slowly to increasing amounts of sound and light. It isn't a perfect science and I still have problems with both, usually associated with migraine but it's worth a shot as it will allow for more social activity without stirring up your symptoms. I know there are therapists that can help with this if you need it but not sure which type. Maybe other members that know which kind of therapist does this could pipe in.

2) Have you tried other types of creative therapy besides writing. Finding a counselor that could walk you through some expression therapy might help you find yourself a little bit and also help you find some ways to fill your time. Even if you can't get to a counselor, you might try your hand at drawing or painting. It's amazingly therapeutic and can almost become a form of meditation as well as self expression.

Hope you find your way.

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I'm sorry Bananas.

I've definitely felt that my personality has changed since becoming sick. I'm not the person I used to be. I also feel trapped. I feel that recently I've gotten worse and I'm lucky to wash my hair once a week, this sounds disgusting but it's true. I'm scared to get in the shower and therefore I get a couple quick baths/showers but wash hair maybe once a week (I always wear it up anyways and mine is on the dry side, so, it doesn't look terrible) but its the principal of the situation. I feel numb to a lot things in life now. I feel very appreciative for all the little things and all the little things other people take for granted. And someone else mentioned in a post the other day about other people, for example on facebook, who complain about the sniffles, etc. It makes me shake my head and I get somewhat angry, if they only knew! If only someone else could be me for a day. I guess long story short, I can relate having experienced similar things. I can barely go grocery shopping anymore (someone drives me) but being in the store, i'm not sure if its the lights and noise and stimulation like others have mentioned but i get so symptomatic.

I think you can tell how much you can 'push through'. you know your body and limits. I push through (Work/job) and housework because I have to, i have two small kids and i have no choice ( or so it feels). I think finding a small church group or just another small activity or group is a wonderful idea. If you crochet/knit, sew, or do something like that, I bet their are little groups in your area that meet up, talk, and do their craft. Maybe a book club or something.

I hope you start feeling better and that things start to improve for you in all areas. If you ever want to just talk or vent you can PM me.

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Thanks everyone.

Katybug, I draw a little but am not good at it and I also know how to knit but my arms have been hurting too much the past few months to knit.

Thanks for talking about needed interaction in your 20s. My mom is introverted like I am and the older she gets the less she wants friends so she's always like "I don't need friends" and it makes me feel guilty for wanting friends. I keep trying to tell myself when she was younger she wanted to be around people her age, she had to have wanted that.

Thanks miss traci, washing hair is hard for me too. You aren't alone in that! Pushing through is a double edged sword. Pushing through you do things but loose all enjoyment. Not doing anything you miss out and long for things, I don't know where balance comes in and works seamlessly its always a rollecoaster *sigh*

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Bananas,

I just saw you have EDS listed in your profile info. Have you checked out the EDS forum "Inspire "? They have some support groups going in many areas of the country and that might be a place to find even more support plus get some action out of the house. I know the one here in MD helps arrange designated drivers for those of us that can't drive. I haven't been to a meeting as I just joined that forum about a month ago.

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Hi, I can relate to how ur feeling. I have been dealing with auto dysf since I was a toddler and now at 31 with full blown pots and who knows what else. I def agree, it feels like it ***** the air and joy out of life, and laughing something that exhausts me as well and that really stinks....=( however, recently I have been trying to look at my emotions and feelings like grieving. I am allowing myself to grieve my ideal life, my ideal personality and so on. I hope and am choosing to believe that what I will become when this is either beaten or more likely managed a little better, will be someone that is humble enough to trust that what I want out of this life was not my purpose or calling. Maybe I am being groomed for something bigger, even if its to help someone else who needs a empathetic shoulder to cry on. I hope that I can get to that place of understanding and peace with it and for npw I am looking at this as lesson in patience and restructuring of my ego. Maybe all things have to be silenced to hear what is most important. Until then though....no way around it....it stinks...lol I let myself stomp my feet and cry it out somedays..I believe through tears comes healing and strength...so I will continue to grieve until I find mine and I hope u find urs too.

The caterpillar gazed in amazement of the butterflys glorious wings =)

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  • 7 months later...

Its near impossible for your personality not to change with this illness...How can you be expected to blend in, and socialize with others when your body is going through BP, HR, and other metabolic fluctuations wile your trying to be social. Ive had to carry on conversations wile I was getting hit with vertigo, gray outs, or adrenaline spikes...It's not easy, let alone going on a date, or a trip...For every disease their is life changes that have to be altered to accommodate the illness...Iv been single for a long time now because of this illness, but I still walk 3 or 4 miles a day, and try to stay active, but I know socializing isn't always in the cards, so I just adapt, move forward, and be very glad I dont have anything worse to deal with...At this point a cyber sweetie is looking like the right way to go...lol...Keep the faith, with a gradual push in exercise, good diet, good hydration, and stress reduction things do get better with all this. God Bless

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